Author: Ian

I received an email overnight from the Polish Medical Marijuana website, confirming that they are happy with my script for the interview video that I am going to be filming today.  The Truth Society haven’t replied yet, but I’m going to go ahead and film it anyway.

I have to wait for the washing machine to finish it’s load first (so I don’t have a soundtrack incorporating the sound of a fast spin cycle), so I take the dog out for a walk, and then listen to PopMaster before making a start.

I set up the camera, tripod and radio microphone, load the script into  my teleprompter app on my iPad and then I’m good to go.  I have a dozen interview questions to answer, and I film them with varying success!  Some answers I manage to film in a single take, others I fluff my lines so many times, it’s ridiculous!  Anyway, eventually I am happy with my answers, and I set about transferring the video to my MacBook, so that I can edit it.

My nephew arrives just as I am completing the process of transferring the video to my computer – he lives and works in Nottingham, but is on holiday this week, so naturally wanted to visit his favourite uncle 🙂  He entices me over to The Vernon Arms for a beverage, not that much arm twisting was needed.  I’m very aware of my left leg tremor, and the fact that there’s no further adjustment available within my current (Group “B”) settings – perhaps a little self-medication of the cannabis variety will be in order this afternoon…  Dyskinesia has abated somewhat, I’m relieved to say, and dystonia remains fairly well controlled.  Balance is still a bit rubbish, mind you.

My nephew departs, and I resume work on the interview video, but I’m seriously behind with it now.  I had wanted to finish the edit and publish it to my YouTube channel this evening, but it just ain’t gonna happen now!  My wife returns from work, and we have dinner fairly sharpish – we have to go out to Spixworth to drop off a birthday present to my wife’s sister-in-law, and we also have to pick up a Nintendo Wii that my wife has purchased from an advert in Gumtree – she read on a Parkinson’s website that the Wii was very beneficial for improving balance!  Anything is worth a try!

My wife and I were woken by an early phone call from one of her sons.  The upshot was that there was a medical emergency, and my wife left the house to go to Hevingham to accompany her son and his girlfriend to the Norfolk & Norwich Hospital.  I email the NHNN to cancel my appointment this afternoon, and reschedule it for next Monday.

I decide to start work on the interview video that I have been asked to do by the Polish Medical Marijuana website and an Instagram account called Truth_Society.  I write a script for the video, which I then send for approval prior to actually filming the interview.  Hopefully they will have responded by tomorrow morning, so that I can get on with it.

My tremor is quite strong on both sides today, but I can’t go any higher with the left hand voltage, and I don’t want to go any higher with the right hand voltage because dyskinesia is getting stronger in my right arm – I’m not (yet) in danger of throwing my drink everywhere when I go to pick it up, but it takes a degree of concentration  to prevent my arm from twitching.  My balance is bad today, and coupled with the dyskinesia I must look a bit of a sight when I try to stand up and thrash my arm around as I try to maintain my balance – lucky there’s nobody around to see.   Because my balance isn’t too clever, my walking isn’t too clever either.  Luckily my dystonia remains well controlled, so I’m not battling that at the same time.  I’m still feeling reasonably happy and motivated, although my energy is on the low side – probably because we have had a busy weekend.  I self-medicate with cannabis this afternoon and, although my tremor isn’t eradicated, it does make it more bearable.

My wife returns home with shopping and a few bottles of Hobgoblin, so it’s time for dinner and a beer, and then an early night.

Awake at 5.30 but managed to get off to sleep again, and didn’t get up until gone 9am.

I have a lot of tremor on both sides this morning, and increase the right hand voltage on my Neuro stimulator to 2.3v.  That pretty much sorts out my right arm, but my left leg tremor is as bit of a nuisance.  I’m already at the maximum voltage allowed on the left side (within Group “B”settings), so I’ll just have to grin and bear it.  Hopefully its something that we can address when we go to the NHNN for a tune up tomorrow.

We leave Brighton at 11. 30 to visit my wife’s grandma near Newbury.  She turned 100 years old earlier this year, and has just gone into a care home.  She recognises my wife, which I’m very relieved about, but it’s sad to see how much she has deteriorated in just a few months.  She seems happy and settled, though, and that’s the main thing.

Next on our whistle stop tour is Stevenage, where my daughter has just started a year’s placement as part of her biochemistry degree.  We arrive in time for a cup of tea and to sample one of her freshly baked fairy cakes, so that was good timing!

Then we are on the road again, on the final leg of our journey – homeward bound.  Tremor is coming back on the right hand side (probably because I’ve had a long day), but I don’t want to play with my device settings any more today.  Dystonia is still around, but has been well suppressed these last few days, which is a relief.  Dyskinesia, ditto.  My mood and motivation are still great.  Balance isn’t wonderful, but it’s been worse.  My walking is a little wooden, and I seem to be getting out of breath very easily – I’ll have to mention it to them tomorrow, although I have previously mentioned my wheeziness since my operation, and this was dismissed as not related to my DBS.  If it isn’t, then it would seem to be a bit of a coincidence – I’m not a great believer in coincidence.

I slept well again, but woke early around 5am and couldn’t get back to sleep.  I lay there awake until about 8 am and then got up and got dressed.  Dyskinesia is still present, but seems to be getting a little better each day.  Dystonia remains under control apart from when I get over tired.

Breakfast is a cracking cup of tea and a bacon sandwich – perfect!

We are going to Littlehampton today for a baby naming ceremony, so we leave at 11am in order to give us plenty of time to get there – the ceremony is scheduled for 12.30.  Its absolutely chucking it down with rain, and the traffic into Worthing is dreadful.  We arrive with just 5 minutes to spare.

We have an enjoyable afternoon, and I get to see a few people that I haven’t seen for over 20 years, as well as some friends that I haven’t seen for just a couple of years!   It’s good to catch up.

When we get back to Brighton, my pal and I disappear off to the pub for a couple of pints while our other halves are busy in the kitchen preparing our evening meal.  My tremor is coming through on the right hand side, so I increase the voltage on the right side of my device to 2.4v (from 2.2v) – I’ll keep an eye out for any increase in dyskinesia, and I will have to remember to turn it back down at bedtime.

I left my device on Group “B” settings last night, and managed to get off to sleep without any trouble.  I slept right through until 5am, when I woke with dyskinesia in my neck and right arm (again), but have to say it wasn’t as bad as it was yesterday morning.  Still, it prevented me from getting back to sleep for another couple of hours, and at 7am I decided to get up, get dressed and get myself downstairs.

I deal with a couple of email enquiries about my video, and then take the dog for her morning constitutional.  We are going away for the weekend this afternoon, visiting friends in Brighton, attending another friend’s Baby Naming Ceremony in Worthing, calling in to see my wife’s grandma near Reading, and then dropping in on my daughter in Stevenage for a cup  of tea on our way back home.  It’s gonna be a busy one!

Tremor seems remarkably under control this morning, and my balance (and walking) are much improved.  Mood, motivation and energy are all good.  Dystonia is okay, so it’s just a little dyskinesia that I have to deal with – no big deal!

I dash in to North Walsham to buy wine, beer and flowers for our hosts, and champagne and flowers for the parents of the baby whose Baby Naming Ceremony we are attending

I decide to wash the car (it hasn’t been done since before I went into hospital in April), so hunt out the bucket, car shampoo, sponge and leather and set about the task enthusiastically!  It takes me a couple of hours (about twice what it should), but I’m pleased with the results, and I haven’t spotted any bits that I’ve missed (yet).  Checked oil and water (perfect) and we’re ready for the off.

My wife has a job that she has to get finished before we leave today so, while I’m waiting for her to return, I vacuum downstairs, load the dishwasher and put it on, and give the kitchen a good clean and a tidy – I know how she hates coming back to an untidy house.  Then it’s time for the dog’s afternoon walk (she never fails to remind me), pack my stuff in the case that we’re taking, and I’m all good to go!

I had terrible restless legs and back pain again when I went to bed last night, even though I had (once again) set the voltages on both sides of my neurostimulator down to 1.5v.  I made the decision to go to Group “B” settings to see if that would help.  I left the voltages at the settings I had previously used when I last had Group “B” settings activated (1.75v on the left, 2.2v on the right).  After a few minutes I no longer had the irresistible urge to move my legs, and I could feel the muscles in my back relaxing.  I dropped off to sleep pretty quickly after that, and slept through until 6am.  I woke with dyskinesia in my neck and my right arm – most uncomfortable!  After almost an hour of trying to get back to sleep, I gave up and got up.

I check my emails (nothing of any interest), Instagram and Twitter (plenty of notifications about my videos) and Facebook, where I find a long message from the owner of the Facebook page that posted my Parkinson’s Disease Tremor Control video and got the majority of the 30+ million views that it has now had.  I’m very touched by the content of the message and the sincerity of it, and I requested (and got) permission to share it on my blog.

I still haven’t heard from the news agency that is (supposedly) handling the licensing of my video, so I send them a snotty email and wait for a response although, from their record to date, I could be waiting for quite some time.

My dyskinesia has eased off slightly, and I am going to resist fiddling with my settings for the time being.  My balance is really crap today, and I very nearly come a cropper on multiple occasions.  Dystonia remains well under control.  Speech remains indistinct and strained.  Mood, motivation, energy – all good.  My back pain is still kicking around, but it’s not as bad as it was yesterday.

I spend the afternoon adding Polish subtitles to my latest video for the Polish medical cannabis website, and they send me a set of interview questions to film myself answering, so that’ll keep me busy for a day or so next week.

It’s getting on for bedtime, and still no reply from the news agency – no real surprise there!

Another difficult start to the night.  I turned my neurostimulator down to 1.5v on both left and right sides before getting into bed, but still felt quite uncomfortable what with back pain and restless legs.  I was just thinking I was going to have to go downstairs and self-medicate with a little cannabis, and then I must have fallen asleep!  I woke at 7am, and lay there awake until almost 8am.

My wife makes me a nice cup of tea and a Nutriblast, before dashing out on an appointment on the way to work.  I have a good full body tremor this morning, and crank those voltages up again, as high as I dare (2.1v on the left, 2.15v on the right).  A couple of hours later and there’s still a whole lot of shaking going on, so I’m thinking about going back to the Group “B” settings this afternoon.  My back feels fairly rigid too, and lower back pain is definitely an issue.  When I take the dog for a walk, I don’t feel quite so wooden when I’m walking, so I guess my balance must be a little better today.  Dystonia doesn’t even cross my mind – that’s remarkable!  Dyskinesia – more embarrassing than uncomfortable, but an unwelcome guest nonetheless.  Mood, motivation, energy – all pretty damn good!

I was contacted yesterday by a Polish medical marijuana website, asking if I’d be prepared to put Polish sub-titles on my Parkinson’s Disease Tremor Control video – naturally, I said yes.  So this afternoon I took the translation of my English sub-titles and entered them on my YouTube channel so that Polish people can understand what the video is all about.  It was actually good fun, and I could (mostly) relate the Polish words to the English ones.  I emailed them when I was done, to get them to approve my changes, and they were so pleased – made me feel quite good!

My latest video has had almost 50,000 views by this evening – pretty amazing, considering it’s just me, talking to camera about the previous video!

I updated my Facebook status to show the number of views I had received on the Parkinson’s Disease Tremor Control (over 30 million), and received so many supportive messages from ex-colleagues and friends, new and old, that I felt quite emotional.  I still haven’t changed my device settings, so I’ll probably wait until tomorrow now…

I had a bad night, in spite of reducing my device voltages.  I tossed and turned until 1am, and then went back downstairs to self-medicate with a little cannabis.  While downstairs, I checked my email and found a couple of emails from the news agency, requesting additional details about a company that had approached me, wanting to use my video.  I replied with the relevant information, and then went back upstairs to bed.   This time I slept.

This morning I am going to work on another video for my YouTube channel.  It’s a follow up video to my Parkinson’s Disease Tremor Control video, answering some of the common questions and comments that have been raised.  My wife and I had made a list of points to cover last night, so I settle down to create a script for the video immediately after walking the dog, and Popmaster.  By 12pm I have finished, and email it over to my wife so that she can check and approve!

My tremor is running wild today, and my left leg is very affected.  I decide to increase stimulation on my device, so now I have 2.1v on the left side, and 2.15v on the right.  I feel the tingle of electricity, and it calms things a little, but it’s still not great.  Also, I think my Group “A” settings are responsible for the terrible back pain that I’ve been experiencing over the last couple of days, and it makes me almost cry out in pain when I move in a certain way.  I’m going to go through my blog at the weekend and make some notes – I have a re-programming appointment at the NHNN on Monday afternoon, and I want to make sure I can give them some accurate data about my experiences with their previous efforts!  As far as the rest of my symptoms go, my mood, energy and motivation are pretty good on these settings, and dystonia is much improved.  The negatives are balance (but I’m still not actually falling), speech (a little weak, slurred and indistinct, but I’m still making myself understood) and dyskinesia (certainly worse than on Group “B” settings, but nowhere near as bad as it has previously been).  This is all fine, if tremor is controlled, because I feel that the negatives are a price worth paying.  If, however, tremor doesn’t improve this afternoon, I may well revert to Group “B” to see if I can get more relief there.

My script has been approved, so I get on with the filming, editing and sub-titling.  By the time my wife returns from work, I have just put the finishing touches to it, and get her to review it before I upload it to YouTube.  She’s very impressed (and easily impressed) and even liked my Rhett Butler impersonation (“Frankly, my dear, I don’t give a damn!”).

By the time I have uploaded it and made it available for public viewing, it’s time for bed.  I check it 30 minutes later, before turning out the light, and it’s already had more than 100 views!

Reducing the voltages on my device last night (from 1.95v to 1.5v on the left, and from 2.15v to 1.7v on the right) was a success – I slept through until 7am, only waking once (at 4am) to use the smallest room.  When I did wake, it was without the awful arching of my back and the accompanying back pain.

As soon as I’m out of bed I put my device settings back to their daytime values (1.95v/2.15v), get dressed and go downstairs.  A shade over 12 million views for my YouTube video this morning.  I’d really like to see what the news agency are making of my content today, so I ping them a quick email requesting an update, and then check my email, Facebook messages, YouTube messages, Instagram and Twitter.  Bloody hell!  I’m knackered already!  I have requests for interviews from a Polish Medical Cannabis website, Parkinson’s Life and Truth Society.  I agree to all of the requests and ask for them to email me a list of questions, and then I will prepare a single video answering them all.  I have a couple of other things I would like to achieve today, so set about doing those before dealing with anything relating to the video.

Walk the dog – done.  Popmaster – done!  Put an item on eBay – photographs taken, prices researched, but description not written.  Package up and send out my kefir orders – done.

Back pain and stiffness has returned (to a degree) since increasing my voltages this morning, but tremor is still pretty much under wraps.  Balance is still a bit pants, and so is my speech.  Mood and energy are good, and today my motivation is a little better, too.  Dyskinesia is still fairly strong, but I’m managing.  Dystonia is okay.  I’ll leave the settings alone again today… perhaps adjust them tomorrow.

I have a number of direct email messages from people who have watched my video and have questions about it.  Answering them is really time consuming, eating into my day, but how can I ignore them?  I put the video (and this blog) out there to help people – I can’t ignore their cries for help now.

I also message my contact at the news agency – when I tell him I’ve had 12 million views, even he replied “Wow!”.   I’d been led to believe 5 million views would be about right for my video, which I had assumed was typical salesman over-egging it.  Now, approaching the end of the day, we are steaming towards 19 million views.  I was hoping to have filmed a short update message to answer some of the more common questions and comments today, but still haven’t even made a start on scripting it – tomorrow is another day…

Wow!  If I thought yesterday was a busy day in respect of social media and my YouTube video, then today is going to blow my mind!  I slept really well, no thrashing around and waking up multiple times during the night, but I did wake up with severe lower back pain just before 6am and couldn’t get back to sleep again.  I had better lower my voltage before going to sleep tonight – hopefully that will deal with the back pain.  I give up trying to sleep just after 7.30am and get out of bed (without disturbing my wife), get dressed and go downstairs to give the dog her breakfast.

There’s a Facebook message from my youngest stepson telling me that my video has been posted on another Facebook page, and has had almost 1 million views!  I thought that my video had pretty much peaked as far as YouTube and Facebook were concerned, and was really waiting to see if the news agency that I was contracted to, would be able to sell it to the news channels.  Not so!  My phone has been pinging all day with YouTube and Twitter notifications about views and comments on my video, and by the time evening rolls around, it has had in excess of 6 million views across just 2 Facebook pages plus my YouTube channel. Officially viral!  I’m even sad enough to calculate that during the course of today it has been viewed 100 times per second – mind boggling…

I have been responding to comments and questions most of the day, and also referring the websites that are displaying my video to the licensing department of the news agency.  It seems like the world and his dog just copy and display content on the internet without any thought of ownership or copyright.  I really don’t understand how it all works, which is why I signed the contract with the news agency – they can deal with all of that.  Even so, I suspect that I am going to be having a fairly busy week!

Symptom check!  Dystonia – okay.  Dyskinesia – verging on the unmanageable at times;  I think I’ll have to turn down my stimulation tomorrow if it doesn’t abate.  Balance is definitely worse than yesterday, and I’m continually catching myself;  my walking isn’t too good either.  Speech is worse also – I find I’m struggling to get my words out, and then I sound a little slurred or indistinct.  Tremor – still present, especially when stressed, but so much better than yesterday.  Mood – really pretty damn good!  Energy – ditto!  Motivation – much the same;  not too bad, but quite variable.

I Facetime my daughter this evening, and she is most impressed that she has seen me on the Unilad website today.  I had been a little concerned about how my son and daughter would react to my social media fame, but I needn’t have worried.  My son has been texting me all afternoon advising me on what to put in my next video, and how I should promote it.  My daughter tells me that it is really cool to have a parent whose video has gone viral.  My kids are pretty cool, also…

I slept well last night (with my DBS turned down again), and woke with a good old shake going on in both legs (but mainly the left one).  I turn my neurostimulator back up to calm them down a little, and stay in bed for a little longer.  My wife is checking the YouTube views on my video before she’s even out of bed – almost 300,000 views!  Amazing!

Downstairs, cup of tea, Nutriblast, checking my emails, reading the comments on my YouTube video.  The comments are nice (mainly), and many questions are being asked about me, and about my video.  I decide to take the dog out for a walk, and answer some of the comments when I get back.

I’m typing responses to some comments/questions with the laptop bouncing around because of the tremor still present in my left leg – not easy!  I have reached the limit of adjustment (on the left side) with my current settings (Group “B”) and take the decision to revert to Group “A” settings to see how they compare.  I’m now receiving 1.95v on my left, and 2.15v on my right.  I feel immediately more tremor free, notably in my left leg, and so am going to stick with these settings today and see how things go.  I notice that my walking is a little less good – I feel somewhat wooden!  I don’t seem to be any the worse for balance, speech, energy, mood or motivation.  Dystonia appears to be under control, and dyskinesia seems to be about the same as yesterday.

The laptop has ceased its movement on my legs for the time being, and I spend much of the day replying to questions and deleting some of the more foul-mouthed or irrelevant comments.  I know, from some of the comments, that my video has been of great help to a number of people who are in the same boat as me, and that feels good.

409,000 views, and it’s not even bedtime!

“What’s going on with your phone this morning?” asked my wife, “it’s been buzzing away every few seconds for the last couple of hours”.  I check my phone, and see loads and loads of Twitter and YouTube notifications.  “Something’s happened with my YouTube video” I said.  21,000 views, that’s what had happened.  Last night there had only been 645.  By the time we had dressed and gone downstairs it was 23,000 views.  This is on top of the views I had received via Facebook!

I turn my neurostimulator back up to quell my tremor, which it does a fair job of doing.  Dystonia is okay this morning, as is dyskinesia.  Balance is fair.  Mood, motivation and energy are all good.

It’s to be my third day in a row in Norwich, this time to choose some cases for our holiday, for my wife to get her hair cut and for my wife to visit a friend of hers that she hasn’t seen for some time.   We visit my wife’s friend, and then the hairdresser’s.  While I’m waiting for my wife to be transformed, I check my email and discover three emails from different news agencies, all wanting to negotiate for rights to my video!  51,000 views and climbing.   My wife emerges (transformed), we choose and purchase some cabin baggage cases, and we head back home.

We arrive home, take the dog  out, and then I have the unenviable task of reading through the contracts sent to me by the online news agencies.  All the time my YouTube views are climbing and the agencies are getting more and more anxious about wanting to get me signed up before the weekend.  182,000 views!  I finally close a deal with one of the agencies, and now it’s a case of sitting back and watching my video go viral (which means millions of views, rather than thousands).  My wife Googles me, and we find that dozens of websites have featured my video and written stories about me, including the Metro online, Daily Record, and Belfast Telegraph!  We simply cannot believe the interest that has been generated.  I’m exhausted from it all, and we spend the evening slumped on the sofa in front of the telly (Netflix) with a beer or two and a packet of Bombay Mix!

We have to be up a little earlier than usual this morning because my son has reserved an iPhone 7 Plus at the Apple Store in Norwich, and has an appointment to pick his new phone up at 10.15.  I’m quite worried by how excited he is about this.  I blame myself for making him an Apple tart – I was the one that moved away from a trusty Nokia mobile phone and purchased an iPhone 3G all those years ago, and I was the one who, after years of being a user of Microsoft Windows, purchased an iMac and MacBook, and then raved about how good they were…  I draw the line at paying the sort of money he’s just parted with for a phone, though.

I turn my device settings back up to 1.75v and 2.2v left and right, respectively.   Tremor is a little better, but my left leg is still a bit of a problem.  Balance is suffering a little this morning, and I’m definitely not walking as well when I take the dog for her morning walk.  Dyskinesia is slightly worse than yesterday, but not bad enough to make me turn down my voltages.  Mood is good, motivation is good, energy is good.  Dystonia is a pain in the foot.

We go to Norwich (again), pick up my son’s phone, and head back home.

My son and his girlfriend are going back home to Dorset this afternoon, so they pack their stuff and load the car while I sit in the lounge deliberating whether or not to self-medicate with a little cannabis.  I decide to wait until they have departed – sometimes it can make me a little quiet and withdrawn.

They leave, I self medicate, I feel a whole lot more relaxed.  Dystonia has been my most troublesome symptom today, and the only thing that has eased it is cannabis.  I need an early night.

I slept well, and wake at 7.30.  My left leg is particularly tremor ridden this morning, although my right leg is attempting to keep up with it.  Dystonia doesn’t seem too bad so far – definitely manageable.

My son wants to go to the Apple store in Norwich today, so I busy myself with one or two tasks that I need to do before going out, and await their descent from the spare bedroom.  I make some tea, package up some kefir grains to post out this afternoon, check on my video (143,000 views this morning) and check my email.  I have an email from the DBS nurses at the NHNN offering me a programming appointment on the 3rd October, so I gratefully accept.  I set my device back to my daytime values (1.75v left, 2.2v right) and relish the feeling of increased tremor control.  My left leg is still shaking, but it’s definitely an improvement.  Balance is okay.  Mood, motivation and energy are good.  Dyskinesia hasn’t kicked in, so that’s a bonus.

My son puts in an appearance, and opts for tea and toast for breakfast (it’s that or nothing, so he chose wisely).   His girlfriend appears a little later, after my son has taken her a cup of tea in bed.  We leave for Norwich just before 12pm, and do the tour of Chapelfield, taking in the Apple store (where my son got his iPhone updated) and numerous clothing stores (where my son’s girlfriend got her fix), and ending up in some sort of american diner for a plate each of pricey french fries.  Tremor has increased significantly in my right leg, and with it has come dystonia, so I increase the voltage on the right hand side of my neurostimulator to 2.4v, which appears to calm the situation down for the time being.  I feel dyskinesia kick in in response, but nothing too unmanageable.

We return home, as does my wife, eat dinner (ready meals from Lidl) and then pop over to the Vernon Arms for a drink or two with my favourite nephew, who has dropped in to see my son.  Everything (tremor wise) appears to be under control, so no more device adjustments are required – at least until bedtime, when I reduce the voltages again.

I slept better last night. Whether it was because I self medicated (mildly) or because I set my device voltages even lower (1.5v on the left, same as last night, but 1.8v on the right), I don’t know.  I did wake a couple of times (at 3am and 6am) but was able to get straight back to sleep.  No apparent thrashing around, no severe back pain.  Result!

I go downstairs and have my morning cuppa before turning my neurostimulator back up again (1.75v on the left, 2.2v on the right) to calm my tremor.   Dystonia subsides.  Dyskinesia looms, but it’s not too much of a problem.  I take the dog for her morning constitutional, and am pleased that my walking is a little less wooden than it has been of late.

My son and his girlfriend have decided to pay us a visit this week, arriving late tonight!  Panic!  I set about making the place look a little more presentable, a little less lived in.   I vacuum the whole house, wash the bathroom floor, clean the bath, basin and toilet.  Motivation and energy are good!

The spare bedroom is inaccessible, stacked with boxes.  The bed itself is stacked with boxes.  We are still renovating the cottage, and the boxes are full of possessions that we haven’t yet unpacked, although they have made it from the loft into the spare bedroom!  I spend a couple of hours finding new homes for all of the boxes – at least you can now get in the room and use the bed, even if standing room is a little limited.

My wife arrives home from work, and flies into a blind panic when she hears that we have visitors tonight.  She calms down, eventually, and we have dinner and a beer and sit and wait for them to arrive.  I self medicate (cannabis) in anticipation of getting to bed and having another decent night’s sleep.

Another lousy night!  I had trouble getting off to sleep again, and then woke countless times with dyskinesia causing me to thrash about, and bad lower back pain (in spite of reducing my device voltages before climbing into bed).  Tremor in my left leg (mainly) was also prevalent, due to the lower level of stimulation.  When I get out of bed, I immediately change my device settings back (to 1.75v on the left and 2.2v on the right) in an effort to still my tremor.  It works, to a degree!

Downstairs, I drink my tea and Nutriblast (prepared by my wife, who also had a bad night – not sure who was disturbing who!) and check on my emails and YouTube video viewing figures.  Over 40,000 views!  There is an email in my inbox from Parkinson’s UK – they have removed a forum post that I made about my video, because I’m in breach of a forum rule “not to discuss, promote or threaten illegal activity”.  Okay, hands up on the “discuss”, but I feel my video neither promotes nor threatens illegal activity, and there are many other threads within the same forum that discuss the use of cannabis, including one that links to 3 YouTube videos that discuss the use of cannabis for Parkinson’s Disease tremor.  I feel unjustly censored – I made every attempt to make my video factual, neutral and unbiased.  Never mind, none of the other sites that I posted (the same message) to, seem to have any such problem with it.

I take the dog out for a quick walk before Popmaster, and then assess my situation…  Tremor on my right hand side is pretty much under control, tremor on my left side seems to be confined to my leg, but it is extremely annoying!  Dystonia seems under control, and, although my walking still isn’t great, my balance doesn’t seem to be too bad.  My voice isn’t as strong as it could be, but it could be an awful lot worse!  Mood and motivation are okay, but my energy levels are low and I feel fatigued.  I would increase stimulation on my left hand side if I could, but I am already receiving the maximum voltage allowed (by my device programmer) for the current program (Group “B” settings).  I go to check on train prices to see when it’s going to be economically viable for me to travel to London for a re-programming session.  It looks like next week is favourite, so I need to email the DBS team at the NHNN to see when I can get an appointment…  I self-medicate with a little cannabis and that helps.  I will do so again just before bedtime tonight, and see if that helps me get a better night’s sleep.

I slept badly last night.  I lay awake until gone 3am, was awake again at 4.30am, and again at 6am.  It’s not due to overstimulation this time, though – I’ve been pretty free from dyskinesia since turning my device down at bedtime last night, and my back pain has eased, so that was evidently caused by my DBS, too.

I go downstairs and sit with a cup of tea my wife made for me before disappearing off to Hevingham to go swimming with our granddaughter.  Tremor is not too bad this morning, so I don’t turn the voltages back up  on my neurostimulator just yet.

I check to see how my video is doing on YouTube – it’s had over 150 views, and I’m happy with that.  I then receive a message from another YouTube user telling me that my video had been shared by another FaceBook page that campaigns for legalisation of cannabis.  I search the page out and find my video, and I’m shocked to see that it has been viewed almost 5,000 times!

By the time I’ve taken the dog for her morning walk, my tremor is on the increase and dystonia in my right foot is proving very uncomfortable, so I turn my device up on the right hand side to 2.2v.  Instant relief.  I leave the left hand side alone for the time being.  It doesn’t last for long – the tremor in my left leg increases to a level that I’m not prepared to tolerate, so I increase the voltage on my left side back up to 1.95v.  I’ll turn it down again at bedtime.

My video is getting quite popular by now, and by the time evening rolls around it has been viewed over 17,000 times – quite remarkable!  My tremor is much more manageable by now, but my dyskinesia is on the increase again so I’m looking forward to turning my device down again.  Balance is ok, walking is wooden, motivation and mood are fine, energy is on the low side because of a late night last night, and a poor night’s sleep.

We opt for another early (ish) night.

I’m a man with a mission this morning.  I want to get my video finished and published.  I need to finish editing the video clips, and then caption the whole video before uploading it to YouTube.  We are attending our granddaughters birthday party this afternoon, so there is a deadline!  I had a fairly bad nights sleep last night – I was wide awake at 5am, and then very restless until I got up at around 8.30am.  I have been thrashing around in my sleep , my wife says, and I wake up in some discomfort.  I also have still got a lot of back pain that I think is related to levels of stimulation.  I think I’ll have to try lowering the voltages on my neurostimulator at bedtime and see what effect that has…

I complete my video, upload it to YouTube, and then post links to it from Facebook, Instagram and Twitter.  I’m amazed at the almost instant reaction to it.  By the time we are at our granddaughters party, I have had almost 100 views – amazing!

My tremor remains fairly stable – not perfect, but not as bad as it has been.  Dyskinesia is definitely a problem at night, but tolerable during the day.  Dystonia is bearable.  My speech isn’t wonderful, but generally it’s okay – it’s only when I get tired that it gets weak and starts to break up.  Balance is about the same – I’m still managing to catch myself before I hit the deck.  My mood, motivation and energy are all pretty good.

I’ve had enough of partying and socialising, so my wife takes me home and puts me to bed . (Okay, I lied. She takes me home and I put myself to bed).  Before I turn out the light, I adjust the voltages on my device, turning my left side down from 1.75v to 1.5v and my right side from 2.2v to 1.95v.  Hopefully I’ll have a better night tonight.

I’m awake early again (6am), and can’t get back to sleep (and I did try!), so I get up at 8am.  It’s a miserable, grey, rainy day and it is forecast to rain all day today, so progressing any further with the boxes for my fireplace shelves is out of the question.  I would like to get on with producing another video for my YouTube channel, but the house is in a bit of a state because everything from the dining room is currently stacked in the lounge.  I spend some time clearing a space for the filming, and then write a script about the beneficial effect of cannabis on my Parkinson’s tremor.  It’s 1.30pm and I’m just about to start filming, when I remember that my car is booked in for its MOT re-test at 1.30pm today…  I leave the house in a panic, and drive as quickly as I’m able to Fairview Garage in Smallburgh.  Luckily they are able to perform the re-test, even though I’m half an hour late, and my car passes, and the vital certificate is issued.

When I get home, it’s still lashing it down with rain.  Our dog declines the offer of a walk for the second time today, and I get myself organised for filming (again).  The first piece requires me to turn my DBS off so that I can show how my tremor is without any medication whatsoever.  Tremor appears in double quick time, and I’m surprised at how violent it is. Dystonia also increases beyond what I expect – most uncomfortable!   I do the required pieces to camera in three takes, (although I’m fairly sure that the first take was okay in any case), and set about importing the video from my camera to my MacBook for editing.

The dog decides that she needs to go for a wee in spite of the wet weather, so I don my coat, grab an umbrella and take her over to the field by the village hall for a quick 5 minutes.

By the time my wife gets home from work, I’m completing a rough cut of the edit, and hoping that I can publish the completed video this evening.  My wife reviews my rough edit and tells me that it’s looking good.  Symptom-wise, everything seems much the same as yesterday (apart from when I had my DBS off), aside from my voice, which is a little weak tonight (my wife says that I’m quiet).

A shopping trip to Lidl in North Walsham takes care  of the next hour or so, and it’s apparent that my attempts to finish my video this evening are a little ambitious.  Tomorrow, maybe…

I was out of bed and downstairs at 7.30 this morning.  I felt as if I had been awake for hours, but in reality I had only been awake since just after 6am.  I want to make some boxes out of pine tongue and groove boards to go on the shelves that I have built in the dining room fireplace.  I sit and plan out how I will construct them, until my wife appears.  I make the tea and coffee, my wife departs for work and I sort out the tools that I will require.  My tremor seems stronger this morning, and I think I’m going to have trouble making accurate measurements.  Dystonia is running riot in my right foot, and that’s very distracting, also.  I decide to switch my device settings from Group “A” to Group “B”.   There’s the odd tingling sensation as the stimulation settings change over, and then my tremor virtually stops and my dystonia eases substantially.  I leave the voltages alone, so they are as they were when I last used Group “B” settings – 1.75v on the left, 2.2v on the right.

I take the dog out for her morning walk, and my balance seems much the same as it was yesterday, my walking seems a little wooden.  The dog doesn’t mind, though.

I spend the rest of the day measuring and cutting the timber according to my plans, gluing boards together to make the front, back, sides and base of the box, drilling holes and inserting dowels to hold the whole thing together, and repeatedly getting it wrong and making stupid mistakes.  By the time my wife gets home from work I’m on the verge of putting the whole lot in the bin.  I resist the temptation and instead stack the product of my day’s labours in a neat pile in the conservatory – I’ll come back to it when I’m in a better frame of mind. I clear away the debris and tools that are littering the back garden, whilst my wife makes our dinner.

Dinner over, bathed, shaved, and a beer in my hand, I’m feeling a little more human, if totally exhausted!  We sit and watch The Rocky Horror Picture Show, which I recently purchased because my wife has never seen it.  She wasn’t impressed…  I notice that dyskinesia is increasing with the Group “B” settings, so some adjustments could be required tomorrow.

It’s 365 days since our beautiful little granddaughter came into this world, and we are going over to Hevingham this evening to join in the present giving.  I have quite a busy day ahead, and take the dog for her morning walk as soon as we get up this morning.  My wife takes me to pick my car up from Autowerke first, and then dashes off to work – she has a job that has to be completed tomorrow, so she wants to crack on with it, and be able to get home at a reasonable time so that we can have dinner before going out this evening.  I part with a large chunk of cash (my brother tells me that’s the price of having a flash car), and then pay a visit to Asda to buy some beer and other odds and sods.  More money!  A visit to the petrol station for a tankful of super-unleaded makes me wince as well!  While I’m running around in Asda, I’m getting more and more tremor, so I turn both sides up to the maximum on my device (2.1v on the left and 2.4v on the right).  I can feel the increased stimulation, and most of my tremor is banished.  I must remember to turn it back down again later on.  On the way home, I stop of at Lidl in North Walsham to pick up something for dinner (I was intending to pick up something in Asda, but I forgot.  Lidl stuff is better quality, though, so that’s alright).

I get home and put the shopping away.  The dog tells me off for leaving her alone.  I finish off the fireplace shelving job (well almost – just have to stain and wax the wood).

I take the dog for her afternoon walk, and notice that my dystonia is markedly worse.  It usually improves with stimulation, so I would have expected it to be better than this morning…  Dyskinesia has not increased (as yet), and I’m very relieved about that.  My balance is about the same, but my walking feels a little wooden and clumsy.  My mood is fine, although I think I could be getting a little irritable – best not forget to reduce my voltages again.  Motivation is good, and I’m itching to put the finishing touches to the fireplace shelves so that I can get on with making another video.

My wife arrives home – I’ve prepared dinner, for a change (okay, so it’s a ready-meal, but it’s the thought that counts).  When we leave the house, I remember to change my device settings back (1.95v on the left, 2.15v on the right).  To be honest, I don’t notice any great change in tremor, but hopefully I won’t have the bad mood that increased stimulation caused a few days ago.

I woke up at just before 7am.  I thought about getting out of bed, really I did.  I want to get an early start on the dining room fireplace – I’d really like to finish the job today.  I thought, at 7.28am, that I’d get out of bed at 7.30am.  I woke again at 9am and virtually leapt out of bed, cursing myself for wasting the day.  My wife disappeared off to work,and I busied myself walking the dog and getting myself organised to carry on with the shelving job.  This is the third day running that I have felt motivated to get on with the house – that can’t be bad!

Popmaster – has to be done, otherwise the rest of the day just doesn’t seem right.

I then get on with the task in hand and the day simply flies by.  It’s almost 4pm before I down tools and package up my kefir orders for the day.  My symptoms haven’t been too troublesome, and I certainly can’t blame them for any shortcomings with the shelves that I have built-in to the fireplace void.  The only real discomfort has been cramping in my hip and my hands.  Dyskinesia hasn’t bothered me today.  Tremor is quite severe in both legs today, but only moderate in my arms, so I manage to perform any of the more intricate manoeuvres without sacrificing (too much) accuracy.  When I sit down for a rest, though, it is apparent that I need to make an appointment at the NHNN for a little reprogramming – I’ll check on the train prices tomorrow.  My mood is pretty good, and I’m feeling motivated.  I even have sufficient energy to tackle the job!  My balance is not too bad, but my walking isn’t great – probably more down to the dystonia in my right foot than my balance.

They have reported, on the radio today, that MP’s are backing a call for the legalisation of marijuana for medical use – my wife called me to tell me about it, and to suggest that I make a video for my YouTube channel about it, showing the positive effect it has on my tremor.  Perhaps later in the week – when the fireplace job is complete!

Right now, I need some food, followed by a beer, followed by a little cannabis, followed by another early night…

I wake feeling much better (mentally) than I was yesterday.  I don’t feel as irritable and angry with the world.  My dystonia has also subsided a little, and it’s more comfortable to walk.  Dyskinesia is still around, but it’s not too troublesome.  Tremor  is a bit more of a feature, however, especially in my right leg, which just won’t stay still.  I’m determined to carry on making the shelves for the dining room fireplace today, no matter what.  I think that I can do so, in spite of the tremor.  I have a lot of lower back pain this morning, and am feeling quite stiff and creaky in general – probably due to the physical work that I did yesterday, rather than the changes I made to my device (I hope).  We’ll see;  if it gets no better in a day or two, perhaps I’ll have to reconsider.

I plan out my day…

• Walk the dog.
• Popmaster.
• Work on the fireplace until 2pm.
• Package my kefir orders (I sell kefir grains on eBay, since being advised to incorporate it into my daily diet) and take them to the post office by 3pm.
• Make a pot of tea, and sit out in the garden with my neighbour for half an hour.
• Take my car in to Autowerke to have the necessary work carried out for my MOT test.

All goes according to plan, apart from the fact that I would have liked to have finished the shelves.  I’m a little bit late leaving to take my car to Autowerke, though – my neighbour enjoyed his tea so much that he asked for another cup (I must make great tea!) – but, even so, I got there before the owner closed up for the day.

My wife picked me up from the garage and took me home, and I still found  the energy (and the motivation) to take our dog out for her afternoon walk.

Dinner, a cheeky beer, and an early night!

I’m grumpy and miserable today.  Everything irritates me and it’s driving my wife mental.  She says I’m just not myself, and I’m forced to agree.  We think it’s because I’ve increased my stimulation so much, so I immediately reduce the voltage on my neurostimulator by 0.1v on both sides (now 1.95v on the left, 2.15v on the right).  I don’t feel any immediate difference, but I’m sure tremor will increase later.  Dyskinesia was becoming a problem in any case, so it’s probably best that I’ve decreased the stimulation.

We decide to do some work on the house today.  There is a redundant fireplace in the dining room which I have lined out with pine boards, and the idea is to turn it into storage space (which is in very short supply in our little cottage) by shelving it out.  

I make a list of all the tools and materials required to do the job, my wife locates them (saving me hours of searching, cussing and frustration).  

By the time we have to pack everything away (we are going to Hevingham this evening for a Chinese takeaway to celebrate my wife’s ex husband’s birthday) we have completed only one shelf, but have done most of the preparatory work for the remaining two shelves. Hopefully I can get the job completed this week. 

My tremor has increased on my right side, and my right foot is curling up with dystonia which is most uncomfortable and is interfering with my walking and balance. On the plus side, I’m not feeling quite so irritated with everything and everyone, much to my wife’s relief.  When we get back home I quaff a beer before bedtime, and self-medicate with a little cannabis to help me relax (which it does!).

Wow!  A lovely late Summer’s day here in Norfolk – NOT!  I draw the curtains back on a wet and grey Southrepps, and when I take the dog for her first walk of the day,  realise how windy it is, too!  A day for staying indoors and vegetating, I think.

My wife is going over to Hevingham to help her sons clear out their workshop, garage and loft.  I elect to stay here and look after the dog!  I decide to spend my time knocking a couple of videos out for my YouTube channel – not DBS videos today, I’m afraid, just some mildly amusing videos that I captured of our dog on my iPhone whilst out on our walks.  I am planning to script a couple more DBS videos next week, and hopefully they will be published on YouTube before too long.

Videos published on YouTube (several times, because I keep making stupid, trivial mistakes that I feel the need to correct), I time my afternoon walk to coincide with a break in the weather.  I bump into someone from the village (a fellow dog walker) who I haven’t seen in ages, and  he tells me he is reading (and enjoying) my blog – eeek!!!  I suppose that’s something that I hadn’t really thought about (well, thought about but not worried about), although my brother (who lives in Nova Scotia) did once ask me what would happen if the drug squad raided me on the strength of my (documented) cannabis use.

<soapbox mode on>

My response was (much the same as I feel right now) that, if they really had nothing better to do, they could come and get me.  It’s no longer a criminal offence (I think), but even if it were, I would still use it, because it makes life bearable.  I have been completely open with my GP, my neurologist, and the entire DBS team in London about my use of the drug.  They all know that it helps some people, but they are powerless when it comes to fulfilling my requests to prescribe it to me because it isn’t licensed for Parkinson’s Disease – a ridiculous state of affairs, to my mind.

<soapbox mode off>

Today is fairly uneventful, symptom wise.  Nothing has changed very much since yesterday.  Tremor is still much the same.  Ditto dystonia.  Dyskinesia has increased slightly due to my fiddling around with settings yesterday afternoon, but it hasn’t got to the stage where I’m turning my stimulator down again, so it can’t be all that bad (either that, or I’m getting used to it!).  Balance much the same.  Speech much the same.  Mentally much the same.  Not quite so tired as I have been for the last few days – good news!

I managed to prepare some vegetables for dinner without losing any fingers (bonus!) and put some chicken breasts in the oven so that, by the time my wife gets back home, dinner is ready (almost).

I have received two postal reminders, an email and a text message over the last fortnight – from the garage that performed the MOT test on my car last September, hoping for the repeat business.  For those outside the UK – the MOT (Ministry of Transport) test is a yearly requirement to enable you to legally use your vehicle on the road.  It checks such things as your steering, wheels and their bearings, lights, horn, washers and wipers, exhaust, brakes, suspension, etc. to ensure that, on the day of testing, your vehicle meets the criteria set out by the Ministry of Transport.  I check on the government’s website, and see that my current certificate runs out on the 25th of September, so I decide to book my car in for a test next week and ring the garage to make an appointment.  “When would you like?”, asked the mechanic.  “Next week”, I replied.  “I’ve got one this afternoon” he suggests.  Why not?  The sooner the better, really.  “Okay”, I said, acting on impulse, “that’ll be great”.

Dog walk.  Popmaster.  I  load the dishwasher, put it on, and then trundle over to Fairview Garage, in Smallburgh for my 2.30pm appointment.

The test takes around about an hour, and so I sit in the waiting area and watch the mechanic crawling over and under my precious car.  I am stressed to a certain degree by this (stupid, I know) and my right leg starts a good old shake.  Worse than the tremor is the dystonia, which is causing the toes of my right foot to curl over until they are almost under my foot – bloody uncomfortable!  I’m glad that I have brought my DBS remote control out with me, and I adjust the right hand voltage up by two notches (0.1v) to 2.25v, leaving the left side alone at 2.05v.  Instant relief.  Not so instant is the dyskinesia which creeps up on me insidiously.  I also need to keep a close watch on my mood to ensure I don’t cause distress to my wife, should it become any more impulsive than it already is!

My car fails the test, which wasn’t entirely unexpected, particularly as I had forgotten that the ABS wasn’t working, so I leave the garage with a list of things that need to be done.  When I get home I call Autowerke, the Porsche specialist in Norwich, and get the car booked in to have the necessary work done.

Tremor in my right leg is still bugging me, so I self-medicate with a little cannabis and the take the dog for her afternoon walk before my wife gets home from work. My balance and walking are not wonderful today, and my voice is very weak by the time evening comes around.  My mood is still fairly good, and my energy levels a little better than yesterday, although I notice that I am getting irritated very easily and have to watch myself quite closely.  A post-dinner beer helps me to relax a little, and I think some more cannabis just before going to bed will help me get a decent night’s sleep.

We are going shopping for baby stuff this morning, so we get up fairly sharpish, and I take the dog for her morning walk before I have had my second cup of tea of the day.  There is a baby “event” at Lidl starting today, and my wife wants to buy some things for our granddaughter, who is a year old next week.  So, we are out of the house and on our way to North Walsham by 9.15am.  When we get to Lidl, I elect to wander around with the shopping list and get the weekly groceries whilst my wife checks out all of the baby stuff.  I do interfere, though, and select a few exotic sounding foods for our granddaughter – we want her to have a varied palate, and there is no time like the present to start on her culinary adventures!

We have a quick scout around Roys, and my wife buys me a trendy T-shirt and we find a present for her ex-husband, whose birthday is the week after our granddaughter’s.

We get back home, unload the car, fill the fridge and freezer with the contents of the car, and then my wife is off to work in Hevingham making a Roman blind for one of her clients.

It was nice to wake up this morning and realise that my left leg was tremor-free.  First time in a long time.  Tremor isn’t far below the surface, but it is below the surface, so thank heavens for small mercies.  Dystonia has receded slightly, and that is also very welcome.  Dyskinesia remains about the same, so it’s manageable.  Balance is fairly rubbish still, and my voice ain’t great, but can’t complain!  My motivation seems reasonable, but my energy is really low today – I’m positively fatigued (if there is such a thing!).   I’m sitting on the sofa this afternoon fighting against my eyelids, which really, really want to close, but I know if I succumb to their will then I’ll be wide awake come bedtime tonight.

I resist the temptation to adjust my neurostimulator today – I think I am at about the maximum voltage that I can take on the current program.  I notice a mildly manic quality to my laugh (from time to time), and the tendency to exaggerated emotions occasionally – something that my wife noticed last night when I got quite angry about something that was relatively trivial.  It all feels a little like the impulsive behaviour that I have experienced previously, and which had freaked my wife out because of the accompanying personality changes.  Definitely something to be avoided.

I had a little trouble getting off to sleep last night.  My mind was buzzing and not ready to shut down.   It was gone 1am when I eventually managed to drop off, and then I was awake again (and I mean WIDE awake) just after 6am.  Perhaps something to do with my current level of stimulation? Hmmm – perhaps…

I have a little more dyskinesia than I had yesterday, but it is still not such a problem that I’m willing to sacrifice tremor control to rein it in. Balance?  Not good, but still not falling.   Speech?  Variable – it’s quite good this morning, but noticeably weaker by lunchtime.  Dystonia?  Grrrrr!!!   Mood?  Pretty good, and definitely elevated due to the increased stimulation.  Energy?  Some, but runs out too quickly for my liking.  Tremor?  Not great, but it’s been worse.

I’m expecting my aunt from Australia to visit this lunchtime, bringing my cousin (from London, but an Australian also) and my mother (provided she is up to it – she has advanced Parkinson’s Disease and hasn’t been too good the last couple of days).  My wife does her “cleaning the house in an hour” trick, and then disappears off to work.

My visitors arrive (my mum is much improved today), and we have teas and coffees in the back garden.  Before we go over to The Vernon Arms for refreshments and some lunch, I decide that some more device adjustments are in order – tremor in my left leg is driving me mad!  My aunt and cousin are amazed to see the difference when I increase the voltage by 0.1v on the left (so that’s now 2.05v on the left, I leave the right side at 2.15v – so far I have no regrets about my “reckless” increases of yesterday, but best not to push my luck, eh?) and, indeed, the tremor in my left leg departs completely.   30 minutes later, when we are sat outside the pub getting ready to order some food, it’s back again, but it’s not as bad as it was before.  We spend a very pleasant couple of hours eating, drinking and chatting, and then they disappear off back to Stalham to take my mum home.

I take the dog for her afternoon walk, and then decide to tackle the front door, which has become increasingly difficult to lock and unlock because of the alignment of the hinges – it really hasn’t been right since the day I had it installed, and the fitters have been back time and time again to adjust it.  By the time my wife arrives home from work, I manage to have got it so that the door won’t even close and I’m stressed, frustrated and dripping sweat.  By the time my wife has prepared dinner, I’ve sorted it out, and although it’s still not perfect, it’s a lot better than it was.

Bedtime is looming, and the dyskinesia still hasn’t increased as I expected it to, so maybe it really is just going to go away – one can only hope.  I shall self-medicate with a little cannabis before I climb the wooden hill, and hope that will help me get off to sleep a little more quickly tonight.

 

 

I know as soon as I get out of bed that my balance isn’t too good this morning.  I’m standing next to the bedroom door and stepping into a pair of trousers when I fall into the door, making a hell of a crash which makes my wife waken in a panic – so much for getting dressed quietly so that she could sleep on a little longer!

Downstairs (correcting my balance a couple of times against the wall), kettle on, make the tea and coffee.  My wife appears shortly afterwards, and continues making a sketch book that she started last night (a present for my aunt, who is visiting from Australia, and who we are going to see this evening).  I take the dog for a walk and decide to do a brisk walk around the football field this morning, rather than tempting fate by jogging again.

I spend the rest of the morning just sitting and shaking, whilst trying to catch up with some emails that I need to reply to – no mean feat when I have such tremor in my legs, and my computer is on my lap.  If I had any sense, I’d put the computer on the dining table and sit up to the table… if I  had any sense…

My tremor is much as it was yesterday – quite vicious!  Dystonia is a little worse this morning, dyskinesia about the same.  I agonise over turning my voltages up on my neurostimulator.  Perhaps I should just adjust one side.  Perhaps I could risk turning one side up by 0.1v rather than 0.05v.  Maybe the dyskinesia won’t return, but what if it does?  In the end, I’m so hacked off with the tremor, I make a reckless adjustment, which I may well regret later on – I increase both sides by 2 increments, so an additional 0.1v on the left and the right (now 1.95v on the left, and 2.15v on the right).  Instantly I can feel the improvement – tremor reduced on both sides, and improved mood as a bonus.  I give myself a good close haircut with the trimmers, have a shave (with only very minor bloodshed), and have a bath.  At least I now look presentable for going to see my aunt tonight.  Dyskinesia is a little more prevalent (I got a few twitches in my right leg while having my bath), but it’s really not too bad (yet).  Tremor is still much improved, although I know it is just below the surface – like a circling shark, I catch the occasional glimpse when it’s dorsal fin breaks through the surface of the water.

I slept well, and don’t recall being awake at all during the night.  When I wake, I have the familiar tremor in my left leg but, other than that, all is well.  When I get downstairs and have my cup of tea, the rot sets in.  I’m stressed because I’m not achieving anything with regards to finishing the renovation of the cottage.  I’ve been busy (and happy) making videos for my YouTube channel (and I have some great ideas for making some more), but that isn’t getting the kitchen finished or the bathroom tiled or any of the other 101 jobs that need to be done so that we can enjoy our home and relax a little.  The stress immediately triggers fairly violent tremors throughout my body, making a mockery of the the expensive piece of kit implanted in my brain and chest.  I can’t seem to relax and calm down at all.

I have an appointment with the Parkinson’s nurse at North Walsham Cottage Hospital this morning, and she can see immediately how stressed I am.  She works hard at getting me to try some relaxation routines, but I can’t say that they were very successful.  I feel thoroughly miserable.

My wife and I wander around the town when my appointment is over, and I buy some milk bottle gums to send to my brother in Nova Scotia (it’s a form of payment for the work he has done, setting up the website for my wife’s business).   My wife buys a “Condolences” card for the family of one of her customers, who succumbed to terminal cancer at the weekend – she’s not having a great day today, either.

Home.  It says a lot about my state of mind today that I have almost constant severe tremor, but it doesn’t even cross my mind to self medicate until after dinner this evening.  It’s gone 7.30pm now and my tremor has calmed down a little – probably due to the beer I’m just finishing.  I’m going to self-medicate with a little cannabis in a moment, and hopefully I can calm things down a little more.

Interestingly, my dystonia hasn’t increased in line with my tremor (which it usually does), my balance seems better than yesterday, and it’s only now that my voice starts to deteriorate (probably because I’m tiring). Dyskinesia is on a par with yesterday.  Mentally – just forget it – tomorrow’s another day.

I read a lot of stuff online about Parkinson’s Disease, and the need to exercise.  Groups that I belong to on Facebook continually bang on about it;  slogans proclaim “Exercise is medicine”, while others tell you that exercise “delays the disease”.  I’m not one of nature’s exercisers, never have been, but I do have Parkinson’s Disease, I am supremely unfit, and I have put on about 14 pounds since I had my Deep Brain Stimulation surgery in April, so I decided it was probably wise to think about eating less ice cream and biscuits, and to try to build on what little exercise I do.  Currently my daily exercise consists of two dog walks –  a quick 10 minutes in the morning, and a more leisurely 20 to 30 minutes in the afternoon.  “Start slowly” I tell myself, “build up gently to more strenuous exercise”.  I decide that when I take the dog for her morning walk I will jog around the perimeter of the football field, rather than just walking.  I can do that!  If I start to tire, I can always stop the jog and walk the rest of the way.  So, I put on my running wellies, and make my way over to the football field behind the village hall with the dog in tow.  Dog off the lead, I start a nice relaxed jog down the right hand side of the field.  No problem!  Two thirds of the way down the field, I’m starting to puff and pant, but that’s fine – I’ll just jog half way today, and then day by day I can slowly increase the distance until I achieve the complete lap!  I reach the bottom of the field, and turn left to jog the width of the field.  Any moment now, I tell myself, I’m going to stop jogging and walk the rest of the way.  How right I was!  My running was speeding up rather than slowing, and I start leaning forwards more than is strictly advisable.  I’m basically out of control, and there doesn’t seem to be anything I can do about it other than fall over.  Which I do.  Spectacular face plant!  Grass and mud up to my elbows, and grass stained knees of a decent pair of jeans.  How glad am I that there were no witnesses?   I pick myself up and walk the rest of the way around the field and home.

My wife is really concerned when I tell her what an idiot I am, but there’s no damage done apart from a mildly bruised ego.  And then I get to thinking (careful now…) about my brain and all the hardware in my head.  As I understand it, my brain is basically floating around inside my skull in a bag filled with fluid, therefore it moves.  The leads that are in my brain are anchored to my skull where they exit the holes that the surgeon has drilled.  How much of a bump can I sustain before my brain is jerked sufficiently to move the leads in my brain from the precisely selected location in the sub-thalamic nucleus?  And the answer is….  I simply do not know!  I have heard of leads becoming dislodged, but I have no idea what caused them to be dislodged.  I think I will have to ask that question of the DBS team at the NHNN.  I’m not exactly worried about my brain, but I’m definitely concerned and wanting to know if there’s a limit to how much I should shake my head, or if I could damage my ring main (wiring) by too vigorously towelling my hair dry (“what hair?”, I hear you say). Should I avoid heading a football?  Is falling face first on the football field to be avoided?

I have a headache.  No, seriously, I have a headache.  It has been lurking at the back left side of my head for several days now, so I’m not imagining it, and the recent exertion and/or fall has brought it to the fore somewhat.  I take a couple of co-codamol to chase it off (which they do), and get on with the rest of my day.

Symptom check!  Dyskinesia – slight, but manageable.  Tremor – both sides, varying from mild to bloody nuisance depending on stress levels.  Dystonia – present and correct, but manageable.  Balance – not great!  Voice – better than it has been.  Mood – not bad!  Energy – well, I managed to find the energy to jog, so much better than the last few days.  Back pain – uncomfortable but tolerable.  No device changes today – let’s see how the week goes…

It’s getting to be a habit, this waking up for no apparent reason in the middle of the night!  I’ve been fully expecting to be woken by dyskinesia brought about by my increased voltages in Group “A” settings, but it hasn’t really materialised.  Tremor is still a pain in the arse, so I’ll be cranking it up again today at some stage, I expect.   Anyway, as I mentioned, I am awake again just before 5am, but luckily fall straight back to sleep until 7.45am.  I seem to be getting plenty of sleep, even when we have a late night like last night, but I feel washed out at the moment and haven’t got much energy.  Motivation-wise, I’m okay.

My wife takes the dog for a good long walk, and I am on a mission to finish off another video for my YouTube channel today.  The editing is almost done – just a little work required at the beginning and end – and then it’s just a case of adding a voiceover and captioning it.  Tremor is causing me problems again, though, so I increase the voltage again on both sides for the third day in a row.  1.85v on the left, 2.05v on the right.  No noticeable decrease in tremor or dystonia.  No noticeable increase in dyskinesia.  What I have noticed is an increase in back pain of the middle/lower variety – not sure if it’s related to my settings, but I wouldn’t be surprised.

I finish the video with difficulty, and then my wife and I go to dinner at her youngest son’s house in Hevingham.  I self-medicate with cannabis on the way, and then eat entirely t0o much food.  When I’m in the kitchen getting myself a drink, I get a wild twitch of dyskinesia in my right leg.   Just the once.  Just in the right leg.  I do hope it goes away by tomorrow…

I’m awake early again (4.35am) for no apparent reason.  I don’t have any pressing need to visit the smallest room, I don’t appear to have any dyskinesia, and my wife is sound asleep so it wasn’t her that woke me.  I manage to get back to sleep for a couple more hours, and wake just before 7am with persistent tremor in my left leg.  About the same as usual.

I’m determined to publish another video on my Youtube channel today, so I’m out of bed and downstairs pronto, and setting up my MacBook and iPad so that I can do the necessary voiceover and captioning that I need to do.

Tea.  Nutriblast.  PopMaster.  Dog Walk.

It’s almost 11am by the time I get to sit down at the computer – almost half the day gone!  Tremor has returned with a vengeance to my right side, and I’m really struggling to control the trackpad.  The first time I have really needed a steady hand (this week) and there’s no bloody chance!  I decide to try another voltage increase on both sides because I have a real problem with tremor on both sides.  I haven’t had much improvement from  my adjustments of yesterday, and I’m going to have to self-medicate (cannabis) before it gets much later,

I increase the voltage on my left side to 1.8v, and on my right side to 2.0v.  No discernible improvement!  In fact, when I’m trying to to some precise movements on my computer’s trackpad it’s worse.  How come it’s worse?

Cannabis gets me to a state where I can continue with my video editing (with concentration) and I eventually manage to publish my video before my wife arrives home from work.

More self-medication is required this evening (both alcohol and cannabis), and I go to bed unsure of what I’m going to do (settings-wise) tomorrow.

When I awaken (at 4.30am) I’m conscious of the tremor in my left leg.  Dyskinesia isn’t the reason I’m awake early for the first time this week, in fact it really doesn’t show itself until I’m getting out of bad 3 hours later.  It’s definitely not as bad as it was yesterday, but the tremor is increased on my left side, and it’s only just below the surface on my right side, so the slightest amount of stress has me shaking like a leaf.  I feel the need to increase the voltage on the left (in particular), but also on my right.  I’m trying to be sensible with my neurostimulator settings, only adjusting one setting at a time, and waiting 24 hours before making further adjustments, but I’m casting caution to the wind and adjust both sides up by 0.05v – I do hope I don’t regret it later.  My device is now set to 1.75v on the left, and 1.95v on the right.

The dog drags me out to the Village Hall football field, and that gets me moving.

Tremor is reduced noticeably, but it’s just a reduction, not elimination.  I’m trying to edit and caption a video today, and I’m struggling to use my trackpad and I’m struggling to type – not good!  It takes me twice as long to do anything, and at the end of the day I have only achieved half of what I wanted to achieve – a damn sight better than not achieving anything, though!

My wife’s brother is coming to dinner tonight, so I help my wife clear away some of my junk (and some of hers) when she gets home from work, and then get out of her way and type up my blog while she prepares the meal.

Time for a beer.  Cannabis later if necessary.

My wife is going back to work this morning, so I am going to take the opportunity to shoot a couple of pieces to camera while I have the house to myself.  I’m meeting with a friend of a friend this afternoon over at The Vernon Arms to discuss Parkinson’s Disease and Deep Brain Stimulation.  “How exciting!”, I hear you cry.  This means that I have almost 4 hours in which to walk the dog, set up the camera and microphone, and actually shoot 2 short pieces to camera, each of  which is less than 10 seconds long.

It’s a beautiful Summer morning, and it’s perfect for dog walking.  With that done and Popmaster listened to (and participated in – not a good scoring day for me today) I have 3 hours left – loads of time!

I have a lot of tremor today, in both sides, but mainly in my right arm and left leg.  Dyskinesia seems a little better this morning (again),  I may turn the voltage a notch  on the right tomorrow if it stays away.  In the meantime, I self-medicate (cannabis) so that I can do the necessary camera work without appearing to be shaking.

By the time I’m ready to step in front of the camera, I have 20 minutes left.  Still possible!  A frantic 15 minutes ensues, with many takes and many very rude words each time I loused it up.  Happy with my efforts, I am quickly putting stuff away before leaving the house when I notice that my radio microphone was set to “mute”, so I have made a flaming silent movie!  What a berk!

We spend a very pleasant 90 minutes having a couple  of lunchtime beers (haven’t done that for a very long time) and a good old chinwag about our symptoms, diagnosis, medication and how Deep Brain Stimulation might help him improve his quality of life.  I switched my device off for a minute or two to show him how DBS calms my tremor – very glad to switch it back on!

Back home, I manage to get the shots that I got this morning, but this time with sound.

My wife returns, we have dinner, and then I self-medicate (cannabis) because my tremor is bothering me again.

Awake early (5am) with dyskinesia again this morning – not as bad as it was yesterday, though, and I get back to sleep for another couple of hours.

My wife is going shopping for a suitcase in Norwich today, and I’m going to do some more work on the videos for my YouTube channel.  I will probably shoot some footage while I have the house to myself – I can’t do pieces to camera while I’m being watched.  I hate doing it in the first place, because I am, basically, camera shy.  I hate the look of myself on video, and I hate the sound of my voice even more.  There’s nothing for it, though, because if I don’t do it then nobody will.  Most of my time is taken up with preparation: the script takes me ages to write and transfer to the teleprompter app on my iPad;  I position the camera so that can I get the shots that I want, and then make sure that everything in the shot is neat and tidy – nothing worse than going to all of the trouble of filming a shot and getting it onto the computer only to notice the crumpled Lidl bag in the corner of the room (yes, it did happen!);  I position the iPad on a stand behind the camera so that (hopefully) I will appear to be looking at the camera while I’m reading the script from the teleprompter;  make sure the lighting is right;  set up the radio microphone;  make sure the dog is out of the way;  vacuum downstairs;  plan the shots and make sure that the props that I require are close to hand.  By the time I’m ready to roll, it’s after 2pm!  Action!

It’s coming up for 6pm by the time I’ve shot all of the footage that I had planned and start to import it to my MacBook.  My symptoms today haven’t really interfered with my filming today, although I have done a number of re-takes when I noticed the tremor in my head or my hands.  Tremor hasn’t been quite so bad as it was yesterday, but it’s still significant, as is my dystonia.  The dyskinesia seems to have abated a little, which is a big relief – I really don’t like it at all.  My balance isn’t as bad as yesterday, and so my walking seems a little better (less stilted) today.  My mood continues to be fairly positive, and I am getting things done.  I have a little more energy today, too, although I’m feeling pretty bushed now (9pm).

Dyskinesia wakes me up at 5am, and I struggle to get back to sleep again.  I wake up time and time again.  I have some tremor in my left leg, and some mid/lower back discomfort, which I’m pretty sure is settings related.  I felt quite positive about my Group “A” settings yesterday, but they are definitely not as good as they should be this morning.  When I actually get up, it’s clear that I will have to change my settings again, sooner rather than later!  I turn down the voltage by 2 notches on  my right hand side (because the dyskinesia is on my right hand side), and it does reduce it a tad.  I’m now receiving 1.7v on the left and 1.9v on the right.

The voltage reduction makes itself known in a number of ways other than a reduction in dyskinesia…  Tremor on my right side, particularly my arm, is quite strong, and dystonia in my right foot is really bloody uncomfortable.  My balance, which I thought was reasonably good at the moment, has also declined sharply, and I repeatedly catch myself on the verge of falling.  My voice is stronger and clearer than it has been for a while, and that’s very welcome.  Both of my arms are feeling weak and aching.

My wife and I go to North Walsham to get some food shopping.  Exercise often affects the symptoms of Parkinson’s Disease, so I am hoping that I can walk some of them off.  We walk around Lidl, and nothing has changed.  When we get home, I rope in my wife to help me capture some footage for another (non-DBS) video I’m planning for my Youtube channel about the health benefits of kefir, a pro-biotic fermented milk product that I produce.

Video footage captured and imported to my MacBook, we take the dog for a walk around the village and distribute some leaflets promoting my wife’s business – 2 birds, 1 stone!  We are only out for about 30 minutes, but it takes its toll and I’m sweating like a very sweaty thing, and in need of a sit-down.  If I was expecting the exercise to reduce the tremors, then I’m afraid I’m extremely disappointed – if anything, they are worse.  I’m going to hang on in there until tomorrow lunchtime before making any more changes to my settings though – it really does take 24 hours for things to settle down properly after a change.

I knock up a rough edit of the video, and it’s looking good.  Voiceover, sub-titles and music are on the agenda for tomorrow.

I’m going to change my settings today.  I mean totally change them, not just tweak the voltages.  I still have quite a lot of tremor on my right side, and my left leg has been shaking away for a while now.  When I was re-programmed on 3rd of August, Maricel gave me 2 completely new sets of settings.  I originally left the NHNN with Group “A” settings in force, but changed them over to Group “B” fairly quickly because of side effects.  I have now been enjoying Group “B” settings for about 3 weeks, and have worked my way up the voltage scale until I hit the maximum (on the left) and aggravated the dyskinesia (on the right).  Time to hit Group “A” again!

My wife takes the dog for a good long walk, and I change my device over to Group “A” settings, 1.7v on the left side and 2.0v on the right, just as they were when I left the hospital.  I’ll wait for the dyskinesia to attack before I change anything.

We drive to The Range on Longwater Retail Park, just outside Norwich, this afternoon.  We are in need of picture frames, and we heard that they have a big selection there.  They do have a big selection, but nothing that is exactly what we are looking for, so we opt for buying the frames slightly oversize and then custom making picture mounts the size that we require. By the time we have made our selection it is almost 4pm and the staff are virtually chucking us out of the door in their eagerness to close the store and go home (and I don’t blame them!).

Home.  Walk the dog.  Dinner (leftovers from yesterday’s barbecue).

My wife busies herself cutting picture mounts.  I collapse in a heap on the sofa.

The dreaded dyskinesia hasn’t reared it’s ugly head as yet, but tremor is still significant in my left foot and is there also (to a lesser degree) in my right arm.  My right arm feels very weak.  Dystonia is slightly more prevalent in my right foot – still bearable, though.  On the plus side, my wife says I appear much happier this afternoon, and my voice doesn’t seem so weak!

As soon as I wake up I know that I have more dyskinesia than I had yesterday.  I also seem to be shaking a little less, so let’s see how the day unfolds.

We are having a barbecue in the back garden this afternoon – it’s a family birthday party for my wife’s youngest son, who turned 26 this week.  The weather forecast is pretty grim – after the fairly fabulous week we have had, the Met Office have issued a weather warning for today, and it’s supposed to rain heavily from mid-afternoon onwards.  We plan to cook and eat indoors in the event of a cloudburst!

I’m conserving my energy for later, because barbecue cooking is a man’s job, so I sit and take it easy while my wife makes a green salad, potato salad, coleslaw, millionaire’s shortbread and flapjack.  My tremor rears its ugly head again, and I briefly consider changing my settings over to Group “A” from Group “B”.  I decide to stick with Group “B” (at least for today) because I cannot accurately predict what will happen to my symptoms when I switch to Group “A”.  The last thing I need at the moment is for my dyskinesia to go through the roof when I’m barbecuing food.  All of my other symptoms appear fairly stable at the moment, so it makes sense not to rock the boat.  My dyskinesia is marginally worse than yesterday, but I can cope with it and it doesn’t seem to be getting any more pronounced as the day goes by.  The flare up of tremor in my right arm has subsided and, although it’s still there (just beneath the surface), I feel I can cope with it.

Our guests arrive, and the promised downpour hasn’t materialised so I light the barbecue and smoke the back garden out.  The party is a great success and the afternoon passes in a flash.  I manage to cook sausages, burgers and several varieties of marinated chicken without burning anything beyond recognition or poisoning anyone with undercooked offerings.  Even the dog approved (because I dropped a burger on the ground).  By the time we have cleared up and everybody has gone home, it’s almost 9pm and I’m absolutely cream crackered.

An early night is in order!

I will try not to overdo it again today.  I think I detected a smidgeon more dyskinesia when I woke up this morning.  My tremor didn’t seem to be improved at all, though – I’m still shaking too much.  I’m fairly happy (within reason) to accept an increase in one symptom as a trade-off for a decrease in a more troublesome symptom.  I  get a little pissed-off when I get the increase with no corresponding decrease!  I can tolerate the majority of my Parkinson’s disease symptoms: poor balance is a nuisance, but (up to now) I have had remarkably few falls, and mostly I catch myself with ease; a weak voice can be a pain, especially when I’m repeating myself for the umpteenth time, but it’s not the end of the world; dystonia in my foot is uncomfortable, but (providing it doesn’t get any worse) it’s bearable; muscle weakness and stiffness can be painful and frustrating, but I’m managing (so far); the poor levels of energy and motivation have (thankfully) improved, but when they were at their lowest I was still getting by; bradykinesia is more frustrating for other people than it is for me.  Luckily I haven’t suffered with freezing of movement (yet).  Tremor drives me to distraction, particularly in my right arm and hand, because it makes it difficult or impossible for me to function normally – make a cup of tea and drink it, pour a beer, prepare (and eat) food, sign my name, type an email, relax…  Dyskinesia is another symptom (of my DBS surgery, not of Parkinson’s Disease) that I find difficult to tolerate, because it robs me of control, and draws attention to me.  At the moment my dyskinesia is tolerable, but my tremor is becoming intolerable at times.  So the dilemma is whether or not I increase the voltage to my right side on my device, to try to moderate the tremor, and risk the dyskinesia becoming intolerable.

This afternoon I increase the right side voltage on my neurostimulator by another 0.05v (still 1.75 on the left, now 2.2v on the right).  If my dyskinesia increases to a point where I can’t put up with it, then I’ll try the Group “A” settings and see if they will give me a better tremor/dyskinesia balance.  In the meantime, self-medication is calling!

Well, this is the 3rd day in a row that I have been experiencing increased tremor on my right hand side.  I think it’s because I have been overdoing it (which I did again, yesterday) but I can’t be sure.  I’ll try not to do anything too taxing today and see if it settles down a little.  If it doesn’t, then I think that maybe more juice is required, and I’ll increase the voltage a little on my right hand side.

I take the dog for her first walk of the day, and then sit quietly in the lounge reading The Metro online, checking my email, and reviewing my YouTube channel – I’m impressed to see that my DBS Video has had over 170 views in just two days, and I have had a good number of positive comments from people who have viewed it.  Not a bad start for something that is so niche.  It will spur me on to make some more, so that will keep me occupied for a little while!

Lunchtime comes around, and my tremor is getting to me, making it a bit of a trial to type or use my trackpad.  I increase the voltage by 0.05v on the right (now 1.75v on the left and 2.15v on the right).  I don’t get any sensation of additional stimulation, but I’ll leave it for 24 hours and see what happens – my biggest fear is that I provoke more dyskinesia, but so far, so good.

This afternoon I combine taking the dog for a walk with visiting the allotment to dig up a few spuds.  I only seemed to have been digging for a few minutes (10 minutes max) when I felt exhausted, so I picked up the few spuds that I had unearthed and headed for home.

I follow dinner with a quiet sit-down, and some self-medication (alcohol and cannabis).  Feeling a little better now!

I had another day of increased tremor, poor balance, weak speech, and aching muscles.  I feel really fatigued even though I had another good night of sleep, and I think it must be because I’ve overdone it (although I really and truly haven’t been doing that much).  Dystonia in my right foot is playing up – perhaps that’s another reason for my poor balance today.

My wife is spending another day trying to get the conservatory sorted out.  We are having a family barbecue at the weekend, and she wants everything to be spick and span when everyone descends upon us.  For my part, I need to clean and repair my barbecue so that it’s fit for use this weekend.  No pressure there, then!  Prior to doing that, I walk the dog and then go into North Walsham to go to the bank, and to get a 21st birthday card for my daughter (it’s her birthday on 31st August).

On my return, I grab a bottle of cream cleaner and a pan scrubber and set about giving the  barbecue a damn good clean (well, it was a kind of mediocre clean, really, but the best I could manage).  Then I got inventive – the central column of the barbecue is secured to the barbecue stand by a threaded bar, which has corroded beyond use.  I managed to improvise with a coach bolt and a couple of big washers, and the copper conductor from some electrical cable that I found in one of the sacks of rubbish that is waiting to go to the tip!  I’m happy that it will (should) stand up to being used this weekend!  I take the dog for her afternoon walk.

My wife, of course, has worked 10 times harder than me and has washed the conservatory frame inside and out, washed the windows inside and out, cleaned out the guttering and washed the roof inside and out.  I really don’t know where she gets her energy from, but I’m truly grateful to her for all of her hard work.  I wish I had the energy to help her more.

After dinner, a beer is in order to assist with muscle relaxation.  Self-medication with cannabis is also on the cards.  I’ve probably gone and overdone it again – tomorrow will tell.

When I wake up this morning I have the usual tremor in my left leg – nothing of any note in my other limbs.  Generally speaking, I’m feeling pretty good.  By the time I’m dressed and downstairs with a cup of tea in my hands it’s rather a different matter.  One minute my tremor is under control, the next I have a full force shake going on in my right arm, and a mild shake and increased dystonia in my right leg/foot.  I can bring it back under control by initiating movement and applying force of will, but it’s a bit of a nuisance.  Conversely, there’s no sign of the dyskinesia which was becoming a nuisance yesterday.  It’s almost like my neurostimulator is switched off (it isn’t – I turned it off to check if it made a difference, and it most certainly did!), even my wife asked “what’s going on with your tremor this morning?”, so it wasn’t my imagination.  Perhaps it’s a result of increased activity over the last couple of days…  I won’t fiddle around with my settings just yet, although I’m very tempted!

It’s my wife’s youngest son’s birthday today and we are going over to have dinner with him and his girlfriend this evening.  My wife is going shopping in Norwich for a new suitcase this afternoon – we are expecting a grocery delivery and a furniture delivery today, so I am staying at home to look after those (and thankful not to be going shopping in Norwich).

Both deliveries are here by 2pm, so that means I can take the dog out for her afternoon walk.  Before I take her I decide to capture some of my post-DBS tremor and dystonia for use in another DBS video – you have to strike while the iron’s hot!  Not sure where it will fit in with the videos that I currently have planned, but I’m sure it will get used at some point!

 

According to my Fitbit, I had one of the best night’s sleep I’ve had in a long time.  I had a solid 7 hours without being restless or waking up.  I don’t feel as refreshed as I should be feeling, though.  My energy levels are quite low.  My motivation has not plummeted, but it has definitely plateaued.  My balance is still not great, and my speech is a tad on the weak side.  Dyskinesia is a little more present than it has been of late, and I thought that I was just about rid of that!  Tremor is still there in my left leg (mainly) but no worse than yesterday.  I’d blame it all on being tired (and I am tired), but my Fitbit tells me I slept well!

My wife carries on with her mission to clear out the conservatory so that we can actually use it.  A package arrives by courier containing roof bars for my wife’s little Seat Ibiza.  When we go on holiday later this year, there will be 5 adults in the car – we figured out that the only way we will get all of us, plus our luggage, into the one car was by sticking a proportion of it on the roof!  I spend a happy hour or two assembling  the roof bars and the various fittings, and fitting them to my wife’s car.  So far, so good.  Now all we have to do is to have a dry run before we actually go on holiday – not quite sure what we will do if we (and our luggage) don’t all fit in…

We have an afternoon of activity!  We load bags of rubbish into my wife’s car and take it to the tip (recycling centre) in North Walsham.  Then we drop in on my wife’s father and brother in Neatishead, who are hard at work on her father’s self-build project.  The fridge on our boat has given up the ghost, and my wife’s father has said we can have the one out of his “site office” caravan, which has been unused for many years.  So we remove the fridge from his caravan and take it to Wayford Bridge, where our boat is moored.  We carry the fridge to the boat, and carry the old fridge back to the car – another trip to the tip is on the cards, methinks!  Then it’s back to North Walsham to do some food shopping, and then home in time to have some dinner.  I’m shattered, but the dog needs her walk, so I take her for a walk while dinner is cooking.

Dinner (Thai green curry), beer (Hobgoblin), bed (early night).

My wife wants to sort out the mess in the conservatory today.  The conservatory is full of all of my junk, materials left over/not yet used for the renovation of our cottage (which would have been completed long ago, if it  hadn’t been for my Parkinson’s Disease) and a wide selection of hand tools and power tools ranging from small scrapers up to a heavy duty SDS drill.  The problem is that there really isn’t anywhere else to put it, although I know that some of it is going to end up at the tip, and some of it will end up being stored in the garden shed.  I try to assist with this task of organising stuff but, in all honesty, I’m more of a hindrance than a help.  I’m also a little off balance today, and stepping over and around things isn’t exactly conducive to remaining vertical!  After two or three near misses, I decide to keep out of the way and sort out a stack of paperwork that is waiting to be sorted (to be fair, it’s been waiting for quite some time!).

Paperwork sorted.  There’s a stack of waste paper for the recycling bin, and our paper shredder is nice and hot due to my identity theft paranoia.  I take the dog for her afternoon walk.  My wife is still slaving away out in the conservatory – I really do admire her drive, energy and enthusiasm.  I’m feeling totally knackered, and I haven’t done 10% of what she’s done.

I help bring stuff back into the conservatory from the garden when my wife finally declares that she’s had enough.  We eat dinner (prepared by my wife) and then we sit and relax for a little while before heading off to bed.  I self-medicate with cannabis to assist me with getting off to sleep – although I’m physically knackered, my mind is working overtime and I know I need something to enable me to switch off.

I’m still troubled by tremor in my left leg (mainly), but other than that, I’m feeling pretty good.  Tremor has always been my main symptom and I hope, above all else, that I’ll eventually defeat it with my DBS.  Motivation and energy were things that I had never expected to be influenced by DBS, yet it’s very clear (to me) that they absolutely are.  Now that I have regained some of my former “oomph!” through adjusting my settings (at least I think it’s through adjusting my settings) I’m loath to change my settings in search of better tremor control, and lose (possibly) my current positive state of mind.  At least I have a record of what I have done, settings-wise, and how those settings have affected me.  If I choose to explore the Group ‘A’ settings, and they prove problematic, at least I can return to the settings within Group ‘B’ which have given me the best result.

My wife and I venture out to the big car boot sale at Aylsham.  The weather is very variable this morning – gusty wind and sunshine between the showers – so there aren’t many people there today.  We go to my wife’s workshop to pick up a curtain pole that I need to get fitted today, and then return home so that I can do so!  I locate the various tools that I require (after some searching and cursing) – workbench, hacksaw, tape measure, spirit level, cordless drill and charger (because both batteries are flat), drill bits, rawlplugs and a pencil – and set about the task in hand, while my wife zooms around the house like a thing possessed, putting washing in the machine, vacuuming, hanging out washing, cleaning the bathroom, etc., etc.

My YouTube video is getting some views – I have had some favourable comments on Facebook and Instagram, and I’m pleased about that – it will spur me on to make some more, and I’ll enjoy doing them.

Dinner time, followed by beer time, followed swiftly by self-medication (cannabis) time…

Today I’ve been mainly video editing…  It’s been a very long time since I did any of this stuff – maybe 9 or 10 years.  Back then my camera was state of the art (passed by the BBC for broadcast quality video) but that was before the advent of High Definition video.  It’s still a nice piece of kit, though, and definitely good enough to shoot some footage for YouTube videos.  Back in the day, I was also using some fairly sophisticated video editing hardware and software – now I’m using an ancient Macbook and some free bundled software (iMovie), which is fairly limited in its capabilities.   Still, I had forgotten how much I enjoyed putting together a video – planning (and getting) the shots, writing the script, importing the captured video to my computer, and piecing it together as planned, doing a voiceover, captioning it with sub-titles, and finally outputting something that I am proud of.

Apart from two visits to the village hall field with the dog, I have spent the entire day producing a video of less than 3 minutes in length – “DBS Operation Scars” – a catchy little title, I’m sure you’ll agree.  I’m pleased with the results, though, and I publish it to my YouTube channel.

My tremor has been fairly persistent today, mainly in my left leg.  I mentioned, a couple of days ago, that I hadn’t had to self-medicate for a little while.  Well, yesterday I self medicated, and today I’m going to do so as well!  I try a little cannabis just after lunchtime, and it helps a great deal.  This evening I add a couple of beers to the equation, and achieve a reasonable state of relaxation.  My voice gets a little weak this evening, but that’s been a bit of a feature of my current settings.  My balance isn’t 100%, but it’s still better than it has been. Dystonia – there, but manageable.  Dyskinesia – there, but only barely there; definitely not troubling me unduly.

I had to go to Wayford Bridge to leave my boat keys at Bank Boats this morning.  My wife had noticed the sound of trickling water when we last stayed aboard, and it turns out that the bearing where the prop shaft exits the hull of the boat has sprung a little leak.  The nice man at Bank Boats is going to take a look at it and determine the remedial action required.  I’m bracing myself for an expensive repair, because nothing is ever cheap when you have a boat!  While I’m in the vicinity, I pop into Stalham and get my air conditioning re-gassed.  My car has been largely unused for the last couple of years, and last time I used it, it was blowing warm air at me.  The garage pumped it full of the relevant gas, and it’s much cooler now!

When I got home, I posted a few adverts on Facebook to sell some of my old (large) furniture that doesn’t fit into our little cottage, and then recorded some video to edit for my YouTube channel.  I notice that I have a fair bit of tremor in my head/neck today – possibly no more than usual, but I noticed it when watching myself on the video recordings that I had made.  Maybe it was because of the active morning I have had.  It’s certainly true that as the day goes by and I start to tire, my symptoms become more noticeable.   The tremor that I now have in my arms and legs, although not what I would call severe, is significantly more than was apparent first thing this morning.  My dystonia is also more pronounced.  Balance is okay today.  My walking seemed a little “wooden”, and my voice is weaker than normal.  Motivation and energy are both much better than has been the case lately – long may it continue!

I decide to increase my left side voltage to the maximum permissible on my Group “B” settings – 1.75v!   If this doesn’t help with the tremor in my left leg, then I think I’ll have to start exploring the Group “A” settings…  In the meantime, I self-medicate!

I slept well, my wife didn’t.  She decides to take the day off work today and attend to things at home.  I decide that I’m going to play around with YouTube and video editing today.

I’m feeling very stressed for some reason, and it’s having a big effect on my tremor and dystonia.  The last few days I would have said that the tremor on my right side was about 1.5 (on a scale of 1 to 10), and the tremor on my left side was about 3.  Today my right sided shakes rank about 4.5, and the left is about 6.  It makes using the laptop a little tricky, but I persevere (and win).  I’m going to risk another increase in voltage on my left side this evening.  I still daren’t increase the right side.  The dystonia in my right foot has gone from 2 to about 5, which is a bit of a nuisance.

Mentally, I’m still feeling that I can achieve stuff, so that’s good.  My balance seems pretty good also, but my speech is a little strangulated at times.

I get myself out of the house to walk the dog this morning, and again this afternoon.  I manage to edit a short video of the dog, compose some background music using GarageBand, and publish the video to my YouTube channel.  Since I have never used the iMovie video editing software, the GarageBand audio software, or published a video to YouTube I feel a (well deserved?) sense of achievement.  I’m now itching to do some Parkinsons Disease/Deep Brain Stimulation videos, but I need the house to myself to do those – I hate being watched when I’m feeling self-conscious and speaking to camera!  I might even have to send the dog out of the room…  Perhaps I will do some more work on the scripts this evening.

I increase the left hand voltage on my device to 1.7v, crack open a bottle of Hobgoblin, and self medicate with alcohol and cannabis.

I wake with tremor in my left leg, as usual.  The adjustments I have been making to my settings (left side) haven’t really achieved what I was hoping for in terms of tremor control, but if they are responsible for my upswing in mood, then it hasn’t all been for nothing – I’m still feeling good.

I increase the voltage by another 0.05v this morning.  Still hoping to find a setting that will settle the tremor in my left leg.  I’m now getting 1.65v on the left side and 2.1v on the right.  There is no change in sensation when I increase the voltage, but I think that’s just because it is such a miniscule amount and the effects are much more subtle than when I was adjusting by 0.1v previously.  I would increase the right side as well, but I still have (mild) dyskinesia on that side.  If the dyskinesia decreases, then I’ll try a little more electricity because, although my tremor is pretty well controlled on the right, it would be good if I could reduce the dystonia in my right foot.

I am still getting stuff done – paid the gas and water bills online, sent off a cheque to the parish council for the allotment rent, posted a “New Baby” card to an old friend of mine, walked the dog (twice), and played around editing some video on my MacBook, just to get my hand back in.  I also started reading the user manual to my camera – it’s been so long since I used it, I’ve forgotten what all of the buttons and switches do…

We are going swimming with our granddaughter this evening, so that’s 3 sessions of exercise today – not exactly a new world record, but a step in the right direction.

I’m almost afraid to say it…  I feel that I can accomplish things today.  I have a list of things to do as long as my arm, which would normally seem quite daunting, but I’m taking it one thing at a time, and I’m actually doing stuff!

I take the dog for a walk, and then sit down and do some planning for my YouTube video channel – I need to decide the subject matter of each video, the duration and the content.  I need to script them, and rig up some sort of autocue device.  I start scripting the first video, and download and test an autocue app on my iPad – so far, so good.

I prepare a quotation for boat curtains and cushion covers for my wife’s business.

I visit my elderly neighbour, and set up his internet radio for him – something that I have been planning to do for several weeks now.  He’s so grateful to me that I feel a bit of a heel for taking so long to get around to it.

I hang the washing out on the line.

I take the dog for her afternoon walk, and then sort out the holiday insurance for our trip to Lanzarote later this year.  Then I work out the total cost of the holiday so far, and email everyone to let them know what they owe me!

I still have a fair bit of tremor, especially on my left side, but I’m feeling that I’m more in control of it, than it is in control of me.  Don’t ask me why, it’s possibly all in my mind, but that doesn’t matter.  What matters is that I’m feeling so much more positive, and I’m actually doing stuff.

I had a disturbed night’s sleep and woke with plenty of tremor in my left leg.  If it doesn’t settle down, then I’m going to be giving my settings another tweak.

I’m still feeling in a better state of mind, and I’m not suffering any side effects (well, hardly any) from the increases in voltage that I have made over the last few days.  I’m almost tempted to think that I may be approaching my optimal device settings, but I’ll reserve judgment on that for a little while yet.  I do notice that, when my wife suggests going to look for some new furniture in Norwich this afternoon, I agree without feeling the sinking feeling inside that has been a feature for so long now.  I feel that I have more energy.  I climb the stairs at home at a much faster pace than I have been doing, and without relying (too much) on the staircase wall to keep me upright.  This is all positive stuff!

We go into Norwich and buy furniture for the house, and when we get back home I don’t feel so exhausted as I have been feeling.  In fact I immediately suggest that we walk the dog (and we do).   A regular reader of my blog might also have detected a significant reduction in references to self-medication.  I do still crack open the odd bottle of beer, but this is because I enjoy drinking beer, not because I require the alcohol to help me to relax my muscles.  Cannabis I use solely to ease my tremor, and haven’t felt the need to indulge on a daily basis for quite a while now.

After dinner, I decide to increase the voltage on the left hand side by another 0.05v (now 1.6v on the left, still 2.1v on the right) – take that, oh troublesome tremor!

Today we are leaving the boat.  My wife has work to do, and I also have things that I should be getting on with.  Regretfully, we unload the boat and reload the car for our trip back home.

I’m definitely feeling more positive – whether that’s because of our little holiday on the boat or because of my device setting adjustments, I’m really not sure!  I do know that it isn’t because my symptoms are all under control, because tremor, balance and speech are all an issue at some point during the day.  My dyskinesia and dystonia are both still present, but they are very much in the background and do not bother me unduly.   Tremor can seem to be very much under control, and then my left leg will start, or my right hand will be almost out of control for a few moments – I concentrate for a few minutes, making movements to bring the tremor to heel again, and then suddenly it’s all under control again.  As the day wears on, and I become more tired, my voice gets weaker and it’s more of an effort to communicate.  Balance is unpredictable.  I’ll seem to be in full control, and then it catches me out without any warning whatsoever.  My reflexes are still pretty good, though, and I haven’t ever actually fallen to the ground.

 

I’m awake and out of bed before 8am.  The sun is shining and the river looks beautiful.  I feel that I have more energy this morning and plan to do some much needed work on the boat today – the wooden roof rails and the wood surrounds on the front windows are desperately in need of some attention.  It doesn’t seem 5 minutes since we last sanded them down and coated them liberally in Sadolin, but we just worked out that was at least 3 years ago.  So, my wife and I turn the boat upside down looking for the sandpaper and wire wool (which we do, eventually, find), and then she works on the roof rails while I work on the front screen.  Some time later, when I have prepared the front screen surrounds, I’ve had enough, and I leave my wife to finish off the job by oiling the wood with linseed oil.  The boat looks 100% better, and I’m pleased with myself for doing something constructive.  I’m even more pleased with my wife for finishing the job!

I’ve still got some tremor on my left side, but I think it’s less troublesome than yesterday.  Everything else seems to be about the same, so I might try another 0.05v on the left side a little bit later this evening.

My wife washes the boat down while I relax on the riverbank and watch.  Then we dash off to North Walsham to get something for dinner (the fridge on the boat has given up the ghost, and I haven’t sourced a new (used) one as yet).

I increase the voltage to 1.55v on the left shortly after dinner, leaving the right side at 2.1v.

Today has been a much better day!

It’s a wet day in Norfolk and I don’t like sitting on the boat in the rain, so we will be going out in the car today.

I’m very aware of more tremor in my left leg when I wake this morning.  My right side appears to be well controlled with no apparent dyskinesia.  My mood is okay.  Balance seems good.  Dystonia is not bothering me.  Speech is good, for a change.

We drink tea/coffee and have some breakfast before departing for Sheringham sorting office to pick up a parcel that we had not been at home to sign for.  We arrived 1 minute after it had closed for the day.  Undaunted, we then drove to nearby Holt where we scoured the charity shops for bookmaking supplies and children’s toys (successfully) and then travel back to Wayford Bridge via North Walsham to buy something for our evening meal.

We take the dog for a walk along the river, and I’m worn out by the time we return to the boat and struggle to stay awake.  By this time, tremor on my right side has joined the tremor on my left, and I’m thinking about another tweak to my device settings.

We eat dinner, crack open a couple of beers and I increase the voltage on my left side by another 0.05v (now 1.5v).  I’ll leave the right side alone for the time being.

Another day on the river.  I awake before dawn to the sound of rain on the boat roof.  Terrific!  I snooze until just before 8am and then get up. We are looking after my nephew’s dog today, and he is bringing her to the boat on his way to work.  My wife says that she thinks that my tremor is as little better this morning, and I think she’s right.  The increased dyskinesia of yesterday has abated, thank goodness.

It’s a bit windy this morning, although the earlier rain has given way to bright sunshine, so we decide to return to our mooring at Wayford Bridge and just spend some time chilling on the boat.   We motor slowly up the river, spotting a kingfisher and a couple of herons on the way, and moor up on the riverbank at Wayford Bridge.  My wife busies herself cleaning the boat while I sit and entertain the dogs/do very little.  I feel okay – not wonderful, but okay.  My wife thinks I’m still a little withdrawn.  24 hours has passed since I adjusted my neurostimulator, so I increase both sides by another 0.05v.  I now have 1.45v on the left and 2.1v on the right.  Again, I’m unaware of any change in tremor.  Again, I’ll leave it another 24 hours and see how I feel.

My nephew bought me a few bottles of beer for looking after his dog, so we plan to open one or two after we have had some dinner.

My wife has a lull in her business, so we are going to take advantage of it and spend a couple of days back on the river.  We get breakfast out of the way, load up her car and head off to our mooring at Wayford Bridge.

My tremor has gone up a couple of notches and is really bothering me now.  My wife says I’m still a bit quiet and withdrawn.  I’m going to adjust my neurostimulator by a very small amount when we get to the boat.  I feel that my mood is better than it has been, but evidently I’m just not my usual self!

We arrive at the boat, load all of our gear (and the dog) on board and then pootle down the River Ant to Barton Turf.  It’s very quiet on the river and we only pass a handful of other craft as we make our leisurely way downriver.  Once we have moored up at Barton Turf I adjust my device up by 0.05v on each side, so now I’m receiving 1.4v on the left side and 2.05v on the right.  I feel no immediate difference, but I’ll give it 24 hours and see.

A couple of hours passes and the only thing that’s changed is that I have slightly more dyskinesia in my right arm, although not troubling me too much.  I self-medicate with cannabis, and that gives me some relief from the damned tremor!

I’m full of tremor today.  Even as I sit typing my blog, the laptop is bobbing around on my lap because of the tremor in my legs.  My left leg is the worst, but tremor control throughout my body leaves a lot to be desired.  I’m tempted to adjust my neurostimulator, but I don’t.  My symptoms seem so variable at the moment that I might incorrectly attribute a change in them to a change that I make on my device.

I’ve been considering making a few videos and posting them on YouTube.  We have all seen the miraculous DBS videos there, where the shaking wreck of a person with Parkinson’s Disease is transformed into George Clooney following the introduction of a couple of volts to the brain, and we all cling on to the hope that our surgery will also transform our lives in this manner.  I want to make a video or two that illustrates the ups and downs following DBS, the sort of problems that I have encountered whilst trying to get the programming right.  I used to do a little commercial video work in my dim and distant past, and still have all of the video equipment stored in my loft (it was broadcast quality in the early 2000’s, but HD has made it all obsolete now).  I spend some time rooting around in the loft and locate my camera, tripod, and the necessary leads to transfer the captured video to my MacBook.  So far, so good.  I spend some time making sure that I can successfully record video on the camera (it hasn’t been used for at least 6 years), transfer the video to my MacBook, and output the edited end result in a format suitable for publishing on YouTube.  Okay, that’s my achievement for today.  Now I need to work on the content, but that’s for another day!

I take the dog for her afternoon walk, then sit on the sofa and try to get my tremor to calm down.  I self-medicate (cannabis) and this is a great help.  Aside from the tremor, I’m doing pretty well today – balance is fair, dystonia is bearable, dyskinesia is almost non-existent, and I’m motivated enough to go searching around in the loft!  Energy levels are fairly pants, but thats probably because of the work I did on the allotment yesterday.

I am awake, on and off, from dawn.  I get out of bed just after 8am, and leave my wife to catch up on her sleep.  The dog is pleased to see me, thinking that she’ll get an early breakfast.  I still feel extremely weary, and can’t understand why I couldn’t stay asleep while I was in bed when I could easily nod off again now that I am not!

The sun is out, and the river looks wonderful, even if the wind is a little too strong for comfort.  My balance is still off, left side tremor persists, right side tremor is unpredictable (but generally under control), and my voice seems a little weak and husky today.  Dyskinesia seems to be a little less troublesome than yesterday and I wonder if it is starting to abate now that my brain is getting used to the new programming.  Dystonia is still quite uncomfortable in my right foot, but it’s been worse.

My wife wakes, puts the kettle on, makes toast.  She’s good like that.  We decide that we are not going out on the boat today because the strong wind will make boat handling difficult, and we don’t want to be doing anything difficult today.  Instead, we pack our things, return home and then go to tend to our neglected allotment.  Weedkiller is applied to most of the beds by my wife, whilst I lift the onions and dig up a few spuds.  I manage about 30 minutes before I’m ready to drop.  My motivation is still very low, but I did manage to make myself help out at the allotment – something I had been trying to make myself do for the last couple of weeks – so it must have improved slightly!  I still lack energy, though.  My wife thinks that my mood is a little bit low – she says that I’m quiet and not my usual self.  She should know.  She could tell which of my previous settings I was using just by looking at me.  I am going to persevere with the Group ‘B’ settings without making any further adjustments – my symptoms appear to be changing without my interference: whether that is for worse or better, that’s something that will become apparent over time, I think.

My daughter is going home this morning, so we are all up bright and early(ish).  I had another good night’s sleep, so the dyskinesia I’m experiencing isn’t causing me to thrash around like it used to do.  I’m still recovering from the trip to London, though – I ache all over, and feel absolutely exhausted.  I take my daughter to Gunton station to catch her train, and then my wife and I head off to a big car boot sale at Aylsham in search of bargains.  We buy some toys for our granddaughter, and some bits and pieces to use in my wife’s new hobby of book making.

We have decided to go to the boat this afternoon, and spend the night aboard, so my wife organises everything while I sit on the sofa and recover from this morning’s exertions.  I haven’t fiddled with my settings at all today, and they do seem to have settled down a bit from yesterday.  Dyskinesia is still there in my right arm, but it’s bearable.  Dystonia is also there but, again, it’s bearable.  Tremor is a feature in my left leg, but is pretty much under control everywhere else. The only thing that appears to be slightly worse is my balance, and I find myself having to catch myself on a frequent basis.  I’m not actually falling, though.

We get to the boat, transfer all of our gear from the car and then run the engine to charge the batteries and heat the water so we can have a shower.  Dinner follows, and then we chill out with a beer or two.

I slept pretty well again, but woke up with back pain again.  It was slightly different from the Group ‘A’ back pain of yesterday.  Group ‘B’ settings caused middle back pain rather than lower back pain.  Not so bad as yesterday.  Tremor is bad, dyskinsia and dystonia is tolerable.  I’m so disappointed.  I felt so good immediately after my reprogramming.  It doesn’t seem fair that it should have lasted for such a short time.

I sit on the sofa in the lounge and drink  my tea and my Nutriblast, managing to stop myself from spilling any with a supreme effort.  My tremor is through the roof on my right and my left side, so I decide to increase the voltage on my right side (my right side tremor bothers me more than that on my left side).  I wind it up to 2.0v on the right – it has a good calming influence on my tremor (and my dystonia) but dyskinesia is increased.  I’m going to live with it for the rest of today and see what happens.  Perhaps my dyskinesia will calm down…

I slept well, but then I expected to because I was practically dead on my feet by the time we got to bed last night (this morning).  I wake up with dyskinesia in my right arm and leg, and lower back pain.  I left the hospital yesterday afternoon with my device set to Group ‘A’ settings – 1.7v on the left side, 2.0v on the right.  Maricel told me that if I have dyskinesia, then it is a result of over stimulation and I should reduce the relevant voltage.  The dyskinesia is really quite bad, so I reduce the voltage to 1.5v to try for some instant relief.  It does provide instant relief in that the dyskinesia reduces a little and the lower back pain disappears, but at the expense of tremor and dystonia – swings and roundabouts, innit?  I’m trying to ascertain my mood, but am finding it difficult because I’m feeling so weary from my busy day yesterday.  I’m not feeling so good as I did immediately after my tune-up, that’s for sure – I’m hoping it’s just tiredness.

My son is returning to Dorset this morning, so I make us all a cooked breakfast – sausages, bacon, poached eggs, toast (my wife did the toast).  He packs his gear into his car, and heads off pronto – he is due to be at work at 5pm, and I want to be sure he isn’t short of time and ends up racing to get back in time.  I tolerate the increased tremor for a while, and then decide to try out the Group ‘B’ settings that were programmed yesterday.  Tremor instantly calmed, but dyskinesia still a feature.  Dystonia there, but less severe.  I’ll give it time to settle before playing with the voltage.

Evening comes around, and the dyskinesia is getting a little more violent.  I’m having trouble drinking my tea without throwing it over everything, so I reduce the voltage on the right side substantially to 1.6v (originally 2.2v on the right and 1.35 on the left) to get a broadly similar tradeoff between tremor and dyskinesia.  It’ll be interesting to see how I sleep tonight…

I have an appointment at the NHNN today to have my device reprogrammed.  My wife takes the dog to be looked after by her son for the day, and the rest of us get busy making sandwiches, getting paperwork together, making sure we can leave home at 10am.  My appointment is at 2pm, and it’s about a 3 hour trip by car.  My son is driving us today so that we can all go to the Blues Bar after my appointment – something he has wanted to do for a very long time.

We eventually leave the house at 10.15am, so I’m already getting stressed about time.  We have a good trip down and, even with a stop at Birchanger Green Services, the satnav is projecting an arrival time just after 1pm.  Even a wrong turn when we leave the M11 doesn’t add more than a few minutes to the trip.  Then we hit the traffic, and my stress levels are going through the roof.  My wife calls ahead to let the hospital know that we will be late – it’s almost 3pm by the time we get arrive at the NHNN.  Travelling by train is so much less stress, and I remember why we stopped driving to London for our appointments now.

Maricel ushers us into an office, and we sort everyone out with chairs.  She gives me an in depth interview about my symptoms and settings, checks my gait and posture and then sets about programming my neurostimulator.  30 minutes later she has completely revised the settings for both Group ‘A’ and Group ‘B’ on my device.  I feel instantly better, and my children are amazed at the difference in me – I don’t think they had appreciated the effect on my mood (and even my facial expressions) that DBS can have.  I feel happier, more motivated, my walking is better, my posture is improved, my tremor is back under control, my dystonia has all but disappeared and I’m thankful for the miracle that is deep brain stimulation.

We go to McDonalds on our way to the Blues Bar, and sate our appetites with chicken wraps, cheeseburgers, shakes and McFlurrys – dreadfully unhealthy stuff, but it’s only once in a blue moon.

The next few hours are spent in the Blues Bar listening to some quality live blues, and quaffing Adnams Ghost Ship.  It’s gone 10pm by the time we get back to the car park under Euston station, and we don’t get home until almost 1.30am.  I’m completely shattered, and I’m relieved that it wasn’t me driving us back to Norfolk.

We have a busy day ahead of us.  I need to take my children over to Stalham to see my mother, but before we leave the house there is breakfast to prepare (my wife has filled the fridge with bacon and sausages, but I think toast and cereal may be the order of the day!) and the dog needs her morning walk.  We will also drop in to check on the boat while we are over that way.  Then this evening my wife’s sons, their girlfriends and our granddaughter are coming over to join us for dinner, so it will be a very full house.

We go to Stalham to visit my mum, drop into the boatyard at Wayford Bridge to check on the boat, and then head back home.  I’m already extremely tired and it’s only late afternoon.  I’m chasing tremor control with my settings – start the day on Group ‘A’, change over to Group ‘B’ because I have too much tremor, back to Group ‘A’ because Group ‘B’ isn’t helping, and so on…  Dystonia is becoming more of a problem in my right foot, whatever the settings.

My wife’s family arrive and the next 3 hours are pretty hectic.  My wife conjures up a feast out of nowhere, everyone chats and eats and drinks, and our granddaughter keeps us all entertained.  Around 8.30pm, just as people are thinking about leaving, tiredness overwhelms me and I find my eyes closing on me without my permission.  Half an hour later everyone has gone, and I’m okay again.  My children insist on taking me to The Vernon Arms for a pint – who am I to argue?

My son is here for a few days.  He wants me to pick up the guitar and (try to) play again.  We spend much of the day listening to great guitar riffs on YouTube, and downloading guitar tab from the internet.  We don’t make a huge amount of progress, but we do listen to some great music – Joe Bonamassa, Ben Howard, Jimmy Eat World, Foo Fighters and so many more.  we also succeed in filling the lounge with guitars, guitar stands and amplifiers.  I struggle to play a sequence of notes with any fluidity, but it is one of the things that I’d really love to master.  I blame it on the Parkinson’s Disease, but perhaps it’s down to a complete lack of talent.  Whatever, there’s no denying that I do love to spend time mucking about with guitars and listening to great music.

I can’t find a good setting on my device at the moment.  Group ‘A’ is affecting my speech at the moment, making me slur a little – I can feel my tongue become more wooden when I change settings from Group ‘B’ to Group ‘A’.  Group ‘B’ was a more effective setting for tremor control, but it actually seems a little worse than Group ‘A’ today, and with the added side-effect of dyskinesia.  Difficult to know which setting to choose for the best result.  I put up with Group ‘B’ for a couple of hours and then revert to Group ‘A’.  No doubt I’ll change again in a couple more hours…

My son and I collect my daughter from Gunton Station, take the dog for a walk, and then sit and chill until my wife arrives home from work.  My wife knows which settings I am on without even asking.  Group ‘A’ settings make me quiet and withdrawn, monosyllabic and unsmiling.  They aren’t really offering me much in the way of tremor control, either.  I change back to Group ‘B’ until bedtime – hopefully I’ll be more sociable!

I slept well last night, and we had a bit of a lie in as well, so we are feeling good today.  We have to move our boat to a new mooring today, and we are socialising with my wife’s family this afternoon so we need to get our skates on this morning.

We drive to our current mooring at Stalham and the cruise around to Wayford Bridge where we have our new mooring.  The rivers are practically deserted, and it’s a beautiful day to be out on the water.  We moor up on the river bank, which is to be our home until a space becomes available in the main marina.  The riverbank is fairly overgrown, and I spend half an hour or so cutting back the undergrowth while my wife walks back to pick up her car.  When she gets back I’m about to collapse, so I sit myself down for a while to recover and then we lock the boat up and head back home.

My wife’s family arrive and we head over to The Vernon Arms for a few beers and plenty of chat.  I’m flicking between Group ‘A’ and Group ‘B’ settings at the moment, trying to achieve a state of calm.  I’m failing.  I’m looking forward to my tune-up – Wednesday can’t come soon enough.

My son arrives this evening, having had a slow journey from Dorset.  It’s good to see him, but I’m very conscious of my tremor.  I really hope to get it back under control by the time he has to go back home.

My son arrives tomorrow evening and my daughter is travelling here from York on Monday, so my wife wants to prepare things for their visit.  Little things like making sure that the spare bedroom is accessible, having enough food in the kitchen to make some meals, stuff like that.

We plan to go food shopping in North Walsham as soon as the dog has had her walk, so I walk the dog while my wife is cleaning around the house.  We are just about to go shopping when my wife receives an email about a mooring for our boat which sounds rather nice, so we elect to go and see the mooring first and then get the shopping on the way home.

The mooring is gorgeous.  It’s probably the most secluded spot on the Norfolk Broads – totally hidden away half a mile up a private stretch of canal.  There are just two drawbacks: access by car is difficult, and there is no water supply (which is a bit of a bummer if you want to have a shower and your water tank is running low).  After much consideration and deliberation we decide against it – if I were a little fitter, or access was a little easier then it could have been a go-er, but there seems little point in going to the boat to chill out, when actually getting to the boat and transferring all of the paraphernalia associated with it will leave me exhausted.  Talking of being exhausted, by the time we get to North Walsham to do the food shopping I am exhausted!  We trundle around the supermarket with me using the shopping trolley as a means of support.  I try changing my device to my Group ‘B’ settings to see if that makes a difference, but can’t honestly say that it does.

Home again, I walk the dog again and then sit quietly on the sofa.  I’m fighting fatigue and apathy.  I ask my wife if she’d like me to prepare dinner.  “Do you feel up to it?” she asks.  “Yes” I lie.  I didn’t even manage to convince myself.  My wife prepares the dinner.  I go back to Group ‘A’ settings because dyskinesia is setting in on my right side again.  I’m seriously looking forward to going back to hospital next Wednesday!

I slept a little better last night, and awoke feeling quite rested.  I decided to make an early change to my settings to see how my mood is affected, so switch straight to my Group ‘B’ settings, get dressed and get myself downstairs.  I beat my wife downstairs (for a change) and put the kettle on.  I make myself a pot of tea, and make a pot of coffee for my wife.  This is promising – normally (on my Group ‘A’ settings) I’d have plonked myself down on the sofa and waited for my wife to do it!  My wife is going to learn all about bookbinding today from a friend of ours, Sheila Robinson, so she is off out and I consider what I have to do today.

I need to confirm to our new boatyard that  I will be taking our boat there this weekend.  I need to talk to my pensions guy about my pension.  I need to find us some accommodation for our holiday to Lanzarote.  I need to book some parking in London for our visit to the NHNN next week.  I need to find out who is playing at the Blues Bar next week when we go to London, and let my children know.

First things first.  Walk the dog.  Switch back to Group ‘A’ settings – dyskinesia has already reared it’s ugly head and, to be honest, tremor control is on the decline.

I spend some time researching parking places on Justpark.com, and manage to find something reasonably priced (for London) and get it booked.  My son is desperate to visit the Blues Bar and has been nagging me for months to take him, so next week he is going to drive us (and my wife and daughter) into London for my appointment at the NHNN on condition that we afterwards go to the Blues Bar.  It’s a deal!  I check out the gig list on the Blues Bar website, and text the details to my son and daughter.

The next most appealing item on my list is to research accommodation options for our holiday to Lanzarote later this year.  Matters are somewhat complicated by the fact that we have invited my wife’s brother to join us, and he hasn’t yet made his mind up whether or not he is coming, so we need to have accommodation with the flexibility to sleep an additional person if required!

It’s time for the dog’s afternoon walk  and I still haven’t chosen accommodation – or tackled any of my other tasks.  I feel as if I’m wading through treacle.  Everything is such an effort, and I’m so very tired.  I switch back to Group ‘B’ settings and take the dog out.

There’s no doubt about it, I definitely feel more “up” when I’m on Group ‘B’.  The dyskinesia is a proper pain, though.  It’s hard to know what to do, and so I find myself switching back and forth between the two groups of settings that are programmed into my device.  Neither is great.  Both have their plus points.  Both have a downside.

After dinner, I sit down with a beer.  The dyskinesia almost makes me throw the the beer over myself.  Back to Group ‘A’ settings I go.  My monosyllabic settings.

I’m really getting cheesed off with waiting for the hospital to call me so that I can make an appointment for re-programming.  This is the 3rd day that I will be sitting waiting for the phone to ring, and I’m not happy about it!  It probably wouldn’t be too bad if I wasn’t already feeling tired and grumpy because the last 2 nights have been pretty rubbish, sleepwise.

I start phoning the 3 numbers that I have for the hospital as soon as I get downstairs.  All 3 numbers just ring and ring and then go to answerphone.  Again.  And again.  And again.  I’m getting really stressed and angry about this.  In fact I pity the person that I do, eventually, get to speak to, because I’m in real danger of losing the plot!

Around 11.30 I change my settings to Group ‘B’ because I have a lot of tremor coming through on both sides.   Tremor on the left side still seems very strong, so I increase the voltage on the left side to 1.2v (from 1.0v.  I leave the right side at 1.5v).  Tremor is now more under control, but I’ll need to keep an eye out for dyskinesia in my neck.

Lunchtime comes and goes, and still I cannot get through to the hospital.  Around 1.30pm I try the phone number of one of the secretaries, and it is answered!!  Struggling to remain calm and reasonable, I explain that I need to speak to Joseph to make an appointment for re-programming next week.  She asks for my name and hospital number, and says she will see if she can locate him.  A minute later she is back to tell me that I already have an appointment booked for next Tuesday at 10.00am.  Steam is coming out of my ears as I calmly express my surprise that an appointment has been made without my knowledge at a time when I cannot easily attend, Norwich being some distance away from central London.  I also (calmly) express my dismay that I have spent the last 2 and a half days waiting for the phone to ring, unnecessarily.  She puts me through to “the lady who makes the appointments”, who is very apologetic and offers me another unsuitable appointment the same day, or an appointment the following week.  I explain to her that I am expecting to be in London with my children on either Tuesday or Wednesday next week, and that I wanted to kill two birds with one stone – the week afterwards will cost me about £100 to travel to London for a 30 minute appointment, and that’s money out of my pocket.  I don’t receive any benefits and cannot claim any travel costs, so this is a real issue for me, but I really don’t think that they “get it”.  Eventually I am offered an appointment on the Wednesday afternoon, which I gratefully accept.  I hang up and sit quietly, trying to calm myself down.  I didn’t lose my temper, but I did try to point out reasons why I might have been a little upset!  The stress has got my tremor going again, so it’ll take a good while for me to calm down.  Medication time!

I awoke this morning feeling exhausted before I’ve done a thing.  I had a bad night and woke many times.  I checked my Fitbit to confirm, and it agreed with me.  Apparently I had been awake and/or restless 18 times last night.

When I get my act together and get myself downstairs, I try calling Joseph at the NHNN again.  Same story.  Phone rings and rings and goes to answerphone.  No point in leaving a message, messages aren’t being picked up.  Another day of sitting in and waiting for the phone to ring.  I also have to be here for a delivery for my wife’s soft furnishings business, so this morning my wife has taken the dog for a walk so that I don’t have to.

I occupy myself by reading The Metro online, checking my email, drinking my tea – exciting stuff; don’t know how I manage to remain so calm.  I resist changing my settings from Group ‘A’ to Group ‘B’ until the tremor has got to the point where it’s driving me mad.  Group ‘B’ settings are still superior as far as tremor control goes, but since I reduced the right hand voltage to moderate my dyskinesia the tremor in my right side is still troublesome.  So long as the dyskinesia remains at its current level, I’ll leave it until bedtime before changing back to Group ‘A’.

I’m in desperate need of a shave and a haircut, so that’s my task for this afternoon.  I had my wife trim my hair with the clippers last time because I felt a little nervous about my lumpy mis-shapen head, but I’m feeling a little bolder today.  My beard has grown beyond the stage of just shaving it off, so I take the clippers to it first.  Mission accomplished without incident, so I proceed with the hair cut.  It takes me a little while, but I manage it and am happy with the result, even though it exposes my lumps and bumps again.  Now to shave.. this proves to be interesting, because my dyskinesia kicks in unexpectedly and I slice a chunk off my chin.  Blood everywhere, and it just doesn’t want to stop.  Oh well, as the founder member of The Parkinson’s Wet Shaving & Blood Letting Society (Norfolk Division) I can’t say I’m surprised.

I clean the bathroom, empty the dishwasher and walk the dog (because it’s now gone 5pm and I’ve given up hope that the hospital will call).

When I get back home, I’m suddenly overcome with tiredness.  My speech is slurred, and I feel as weak as a kitten.  I think an early night is in order.

Had a better night’s sleep last night – most likely because I self-medicated just before going to bed last night.  We got up earlyish again because we are babysitting for our granddaughter again today – in fact my wife was on her way to Hevingham to pick her up before I was even out of bed.

I get myself dressed and go downstairs to make inroads on the pot of tea that my wonderful wife has so thoughtfully made before departing.   I am reminded (by my tremor) that I really must make an appointment with Joseph at the NHNN for a tune-up, so I try calling the secretary’s number.  Answerphone.  Again.

My wife returns with a happy and smiling grandchild, and we immediately go to take the dog for a walk together.  When we return, I try calling the hospital again.  The phone is answered!  Amazing!  Not so amazing is that the secretary tells me that she is unable to book an appointment for me, and that she has passed my message on to Joseph who will call me to arrange a date and time.  So… a day of sitting in and waiting for the phone to ring.

I’m getting fed up of tremor.  I change my device settings over to Group ‘B’ so that I can become less fed up of tremor and more fed up of dyskinesia.  Nothing seems to be working very well at the moment.  Tremor presides over everything regardless of settings, dyskinesia, dystonia, poor balance and weak voice are all present in varying amounts, but I’m coping with them.  The post arrives, and with it is my Fitbit, which I bought on eBay on Sunday.  I spend the next couple of hours installing software on my MacBook, iPad and iPhone, and learning how to use the damn thing!  I bought it on the recommendation of a friend, and thought it might motivate me to do a little more in the way of exercise.  I also bought one for my wife because I know she wants one.  Absolutely bloody typical that hers hasn’t arrived yet (and I bought hers a week ago).

My mother and father-in-law arrive to see their great-granddaughter, and this passes the afternoon away quite nicely.

Granddaughter returned, afternoon turning into evening, still no call from the hospital.  Dog walked.  Dinner eaten.  Hobgoblin Served.  Time for House Of Cards.

We are up earlyish for a change – my wife and I are babysitting for our granddaughter today, and my wife has to be in Hevingham by 8.30am to collect her.  While she is out, I have a leisurely read of The Metro online, and drink my tea.  My tremor is fairly marked in my right arm, but I shall stick with Group ‘A’ settings for the time being because Group ‘B’ didn’t seem an awful lot better yesterday, and added some dyskinesia into the equation.

My wife returns with our granddaughter, who is happy and smiling, thank goodness.  We take her with us while we walk the dog, and then I disappear upstairs to make a couple of phone calls – one to Tony at Bank Boats to let him know that I have decided to take up the offer of a boat mooring at a neighbouring marina, and one to Joseph at the NHNN to try to arrange a re-programming appointment next Tuesday.  Contacting Tony is easy – job done.  Contacting Joseph at the NHNN is practically impossible.  I have his direct number, and two other numbers (the secretaries) to try.  The direct number rings and rings and then goes to answerphone, informing me that messages are not being picked up, and to please call the secretaries.  The first secretary is on annual leave, and her answerphone message informs me that messages are not being picked up, and to please call the other secretary.  The number for the other secretary rings and rings and then goes to answerphone.  I try the number repeatedly over the next half hour  or so, and then leave a message asking her to return my call.

 

 

 

 

 

 

 

We have a delivery this afternoon – the glass paperweights and bowls that we made at Langham Glass last week; how exciting!  They actually don’t look too amateurish considering that they were made by a couple of complete amateurs!

I’m completely wiped out by now, and am fighting hard to keep my eyes open – I suppose that being out and about yesterday has taken it out of me.  I close my eyes for a few minutes, but don’t fall asleep properly – I’ll only be wide awake later on if I have a sleep now.

I take the dog for her afternoon walk while my wife returns our granddaughter to Hevingham, and that wakes me up a little.  I have been noticing that I am getting some tremor in my head over the last couple of weeks – more so when I am tired.  I think this may be related to my most recent settings (Group ‘A’) which don’t give such good tremor control as the previous ones.  Something to consider at my next tune-up.  Talking of which, there has been no contact from the hospital, so I’ll call them again in the morning.

I have to find a new mooring for my boat by the 1st of August, so time is running out.  We get up reasonably early (for a Sunday), and I’m on the case – scanning the waterways of the Norfolk Broads on Google Maps (satellite view) to see where all of the tucked away marinas are, and printing out “Wanted” cards to put on noticeboards and post through doors.  My wife and I plan out our day – where we are going to go looking, and the order in which we will do so.

And we’re off!  First stop is Dilham – picturesque and quiet, but at the end of the navigation, meaning it takes 45 minutes to actually get down the river to Barton Broad whereas currently we are only 10 minutes away.  We find a host of private moorings tucked away in a gorgeous location, and get talking to a couple of the local residents.  There’s also a noticeboard there with an advertisement for 2 moorings to let.  Seems quite promising, but we are probably going to struggle to get anything sorted by next weekend.  The locals are very helpful and give us a phone number to try.  We return to the car, attaching “Wanted” cards to anything that doesn’t move.

Next stop, Wayford Bridge.  We pop in to see Tony at Bank Boats.  I had him do some work on my boat last year, and he remembers me.  Amazingly, there is a possibility of a mooring coming up, and he will find out this week and let me know.  There’s another boatyard nearby, and we pop our heads in to take a look.  There are three possible moorings coming up, and in the meantime the owner can accommodate us on the main riverbank – so that’s one in the back pocket if nothing else comes up.  Rates are reasonable, too, which is a real bonus!

We decide to call it a day – we have achieved what we needed to achieve, so we drop in to see my mum in Stalham before heading home.

Home, email the Dilham moorings advertiser, phone the number we were given (no luck there, unfortunately) and take the dog for a walk.  I’m getting bucketloads of tremor and my voice is getting very weak – probably because I’m getting very tired by now.  I try turning my device off completely for 10 minutes, just to see if my voice improves.  I think that it does, but certainly not by very much.  Tremor is through the roof, and my dystonia is curling my right foot in a really uncomfortable fashion!  I power myself up again, and then switch over to Group ‘B’ settings.  Things are a little better, but still have plenty of tremor, especially in my left leg.  Dyskinesia is in my right arm, but it’s manageable so I’ll leave things be for a little while.

We have dinner, and I self-medicate with a Hobgoblin and follow that up a little later with some cannabis.  Much calmer now, and much more likely to be able to sleep easily tonight (last night wasn’t as bad as the night before, but I took a long time to drop off, and I then woke up several times in the night).

I’m struggling again today.  I had a poor night’s sleep, and didn’t want to get out of bed this morning.  I have no motivation.  No energy.  Tremor is bad again.  I try changing my device settings after I have had my morning tea and Nutriblast.  Group ‘B’ settings offer me better tremor control, but the price I pay is dyskinesia.  Dyskinesia returns almost immediately, and I know I can’t tolerate it for very long.  I try turning down the voltage on the right hand side to see if that will help.  From 2.0v down to 1.5v (I already turned the left side down to 1.0v, which was successful in that the dyskinesia in my neck disappeared.  Unfortunately the tremor in my left leg is now much more pronounced).  The voltage change on the right does reduce the dyskinesia (a little) in my right arm, but also means that tremor control isn’t what it was.  My left arm  is significantly weaker today – quite uncomfortably so at times.

We are going to a barbecue at my wife’s youngest son’s house this afternoon, and we have a few things we want to get done around the house before we go.  My wife walks the dog and then is busy upstairs trying to clear out the spare room so that my son and daughter can use it when they arrive next weekend.  I need to sell a large coffee table that is currently taking up far too much room in the lounge.  So, I polish the table and photograph it, and then I put an advert on Gumtree, list it on eBay, and post it to about 6 different “For Sale” groups on Facebook.  Within 10 minutes, I have a response from one of the Facebook groups, and 3 hours later the table is gone and I have money in my pocket.  Ever think you sold something too cheaply?  I spend the rest of the time before we go out cancelling all of the advertising that I spent all morning creating!

While we are at the barbecue I am having trouble trying not to throw my drink over myself, so it’s back to Group ‘A’ settings we go.  The dyskinesia doesn’t disappear instantly, but is definitely on the wane.  I manage to get my drink down my throat rather than down my t-shirt.

I’m not feeling too sharp this morning – still very fatigued from yesterday, I guess.  Still, I have plenty of paperwork that I need to attend to, so that’s my plan today.  I need to go through the paperwork that Yorkshire Bank have sent us in connection with a business account for my wife’s business and I really need to contact the bloke who deals with my pension – I came across some paperwork yesterday that I had mislaid, so I logged onto the pension company’s website to check on my pension fund to discover that my fund went up by almost 10% in the month following the EU referendum!  Obviously somebody must be happy about Brexit!

I take the dog for her morning walk, and settle down on the sofa with a cup of tea, my iPhone, iPad and MacBook – totally connected, 100% Apple tart.  All of our Apple gear is outdated, though, so I have to think about replacing everything.  I’m keeping a close watch on eBay at the moment.

I switch my device over to Group ‘B’ settings.  My current tremor will make things a struggle.  Group ‘B’ feels a little better, but not a lot.  I can immediately feel the onset of dyskinesia in my right arm, and know that I won’t be able to tolerate it for very long.

Paperwork!  I start to go through the business account application forms, and my heart sinks.  These forms that they have posted out to us should contain all of the (accurate) application data that I entered online – all I should have to do is check and sign them.  The company name is wrong, the trading name is wrong, the trading address is wrong, the registered address is wrong…  I call the company help line, and eventually get to speak to a very apologetic man who promises to make a note on their system, and that they will prioritise our application when I send the forms back, as an acknowledgement that they have screwed up.  We shall see, but it’s not a very impressive start.  This is meant to be their business.  It’s what they do.  If they can’t get a simple application for a business account right, it really does make you wonder!

I switch back to Group ‘A’ settings before taking the dog for her afternoon walk – she’s been very patient, but I know her eyes are watching my every move, waiting for me to move from my seat and head towards the front door.

Tremor returns, accompanied by some dystonia, and I know I’m gong to be self-medicating before too much of this evening has gone by.

My wife and I are having a glassblowing experience at a Norfolk glass factory today.  For her 50th birthday in December last year, we all clubbed together to allow her to select a number of “experiences”, ranging from a spa day through a ride in a hot air balloon to rally driving.  Today is her first choice, and she decided that she wanted me to join her, so she paid for me to have the glassblowing experience, too, for my birthday present (in May).

I have a fair amount of tremor this morning, and I’m delaying switching my settings over to Group ‘B’ until we are actually at the glass factory this afternoon – I want to have the best possible tremor control whilst I am handling molten glass.

My wife makes the tea/coffee and Nutriblast, and then takes the dog for a walk while I simply sit and pass the time of day checking my email, catching up on the news, preserving what little energy and motivation I have.

We arrive at the glass factory in Fakenham – Langham Glass – just after 1pm.  My tremor is much worse today, probably because I’m going to be interacting with people that I don’t know.  Parkinson’s Disease is extremely reactive to stress.  I switch over to Group ‘B’ settings when it’s my turn to handle some glass, and immediately the tremor reduces.  Within a few minutes it returns, although not quite so severely, and my right arm and both of my legs are having a little dance.  Our instructor is excellent and doesn’t bat an eyelid even though he can’t avoid noticing. For the next 3 hours we are kept busy making paperweights and bowls.  Our instructor is so good that we almost (but not quite) believe that our items would have turned out just as perfectly if he hadn’t been there.  Towards the end, dyskinesia forces me to return to Group ‘A’ – luckily my paperweight and bowl are finished.

By the time we get home I feel completely exhausted and it’s just about all I can do to join my wife in walking the dog.  Dinner, a beer and House Of Cards follow, accompanied by another change of settings – at least until it’s time for bed.

Another fabulous warm Summer day.  It’s a little bit hazy today, but it’s 26 degrees Celcius in the lounge this morning.

I booked some holiday flights today for my wife and I, and her youngest son and his girlfriend.  I like to go away when the evenings are dark and the weather is cold – I really don’t see the point in paying out top money to go on holiday to somewhere where it’s too hot to sit out in the sun, when we are in the middle of our British Summer.  The last few years we have gone away to the Canary Islands in January or February, but we are mixing it up a little bit this year by going in November.  So… we have flights to Lanzarote; now I need to sort out our accommodation.  I send a couple of email enquiries, and now it’s just a case of deciding which apartment takes our fancy, and then looking forward to going away.  This will be the first time for me going through airport security since I had my deep brain stimulation hardware installed.  I’m not exactly worried about it, because I’m sure it will be okay, but it is certainly on my mind.  At least this time I won’t have any cannabis in my suitcase – something that has really worried me the last 2 years.  Parkinson’s Disease medications either have no effect whatsoever on my symptoms, or the side-effects make me feel so ill that I prefer to have the symptoms!  The only things that have got me through the last couple of years have been muscle relaxants – alcohol and cannabis.  Don’t get me wrong, I haven’t spent the last 2 years tanked up on booze and stoned out of my tiny mind…  A pint of beer does the trick, and miniscule quantities of cannabis work wonders.  I would have hated to have gone on holiday without anything to help me cope with the tremor, so I baked chocolate brownies with cannabis (2 small pieces per day) and packed them in Tupperware containers amongst the clothes in my suitcase.  I have no idea what would have happened if I had been caught, but I did find out that possession for personal use is not a criminal offence in the Canaries, so probably the worst that would happen would have been confiscation and a slap on the wrists.  This time it will be different!

Motivation – not good today, but has been worse!  Energy – not a lot.  Balance – not wonderful, but not actually falling over.  Speech – a bit slurred (to my ears).  Tremor – varies from 1 (mild) to 8 (pain in the arse).  Dystonia – uncomfortable, but not the end of the world.  Dyskinesia – nothing on Group ‘A’ settings, but annoying on Group ‘B’ – stayed on Group ‘A’ all day and changed to Group ‘B’ around 7pm.  Will change back at bedtime.

An old friend and work colleague is visiting today – I haven’t seen her for a good many years, so it will be good to catch up.  I’m a bit concerned that my tremor is going to be a distraction so I’ll have to have a fiddle about with my device settings.  My wife disappears off to North Walsham to buy some food for our lunch, and I take the dog for her morning constitutional.

I’m having to switch between my Group ‘A’ and Group ‘B’ settings increasingly frequently because, although my tremor disappears when new settings are chosen, it returns more quickly each time.  So does dystonia.  And dyskinesia (but only with Group ‘B’ settings).  So what are the differences between these groups of settings?  Well, each group utilises (in my case) a different contact (or set of contacts) on the electrodes that are implanted in my brain.  Differing voltages are applied to these different contacts, and a host of other parameters may also be set, such as polarity, frequency and pulse width.  The aim, in each case, is to block signals from overactive neurons in a certain area of my brain.  So different groups of settings with but one aim – there’s more than one way to skin a cat!  I don’t know why the settings lose their effectiveness over time… perhaps my brain gets used to it, and decides to ignore the stimulus, or perhaps it’s just that my advancing Parkinson’s Disease means that more (or different) stimulation is required (and that’s a frightening thought, because it means that my illness is advancing at a rapid pace).  I did turn my device off for 10 minutes this morning to see how things were without it.  I have either deteriorated significantly in the last 3 months, or the deep brain stimulation has made me forget how bad I was.  I’ll choose to believe the latter.

My friend arrives and we spend he next few hours reminiscing about work colleagues, catching up on family events and, of course, eating some lunch.  We wrap it up with a short dog walk over at the village hall, and then she’s on her way.  I started off on Group ‘A’, changed to Group ‘B’ just after she arrived, and reverted to Group ‘A’ again shortly before she departed (dyskinesia, more than tremor, prompted this).

We have now had some dinner (leftovers from lunch) and opened a beer.  I’m thinking about another setting change, but I’ll wait a while yet – maybe my tremor and dystonia will calm down with the alcohol.

It’s the third morning in a row that we wake up to bright sunshine, so Summer is officially here.  It’s just a matter of time before someone moans that it’s too hot!  Me?  I never moan about the weather being too nice.  I love the warmth and sunshine – there are plenty of other things to moan about if you must, but we have so little good weather in this country.

I must apply myself to finding a new mooring for my boat this week.  I need to move it by the beginning of August, so there really isn’t that much time.  I’m going to put a couple of “Wanted” ads on the internet today and hope that I get some sort of response.

My tremor and dystonia are relatively calm this morning, but the usual pattern emerges.  Both get gradually more prominent as the morning wears on, and by the time lunch comes around I’m feeling in need of some kind of relief.  1pm and I change my neurostimulator over to Group ‘B’ settings.  I love the feeling I get when I change settings.  It’s a tingle that floods my body; I immediately stop shaking and my right foot relaxes.  It doesn’t last very long though, and I have significant tremor and dystonia again before the clock strikes 2pm.  I really need to go back to see Joseph at the NHNN, but it’s an expense I can ill afford.  I checked the train fares last night, and the cheapest fares are the 2nd and 3rd of August.  My daughter is coming to stay with us for a few days commencing 1st August, so I really don’t want to be away for a day while she is here.  My son is coming to stay for a few days at the beginning of August also, and wants as all to go to the Blues Bar while he is here.  Perhaps we can tie in a visit to the hospital at the same time?  He also wanted me to pick up the guitar again and has challenged me to learn something new now that my tremor isn’t so severe – I will have to see what I can do.

I persevere with the Group ‘B’ settings until almost 7pm.  By then I have some dyskinesia in my right arm and am fairly uncomfortable, so it’s a relief to go back to Group ‘A’.

I’m on a bit of a downer today.  Not sure why, but I just am.  I think it is all down to the settings on my neurostimulator.  The settings that I am currently on (Group ‘A’) are my monosyllabic settings (so my wife says) – I neither make conversation or respond to conversational attempts made by her.  I just grunt or say “yes” or “no”.  They definitely make me feel less motivated, less energetic.  They are no longer so effective at calming my tremor as they were a coupe of weeks ago, and the dystonia in my right foot is very uncomfortable this morning.  I feel that the Group ‘B’ settings are accentuating other aspects of my mood – a minor irritation becomes unreasonable rage, minor excitement becomes impulsive behaviour – so I’m holding off changing them over at the moment.

The morning dog walk makes me feel a little better, gets me out of the house, gets me moving.  My wife is having a day of listing some of our unwanted items on eBay – a task that takes more time than you would credit.  She also works a minor miracle in the back garden, clearing a patch of weeds, nettles and general debris.  I sit in the lounge and do very little.

Time for the afternoon dog walk, and I suggest that my wife comes along with us, so we set off for a walk around the village – a change from the usual run in the field by the village hall.  As we walk out the front door I change my device settings over to Group ‘B’ because my tremor and dystonia are driving me up the wall.  My walking isn’t great today (I ask my wife to watch me walking, and she agrees that I’m not walking too well) and my voice is also very weak and husky.  I will have to speak to the Parkinson’s nurse about some speech therapy.  I can just imagine how frustrating it would be if I can’t make myself understood.  When we get back home I change back to Group ‘A’ settings because I don’t feel any better than before, and I don’t want to risk dyskinesia if there’s no benefit to be had.

I make dinner for once.  A very simple meal that doesn’t require me to use a sharp knife – chicken fried rice.  That’s my achievement for the day!

I’m feeling better this morning – much more motivated (it’d be difficult for me to feel less motivated than yesterday).  We get up, make decisions about what will do today (go shopping, get my glasses fixed, take a carload of junk to the tip, start sorting the conservatory out so that I can find the tools I need to finish off jobs around the house, buy weedkiller to nuke the allotment with), and I take the dog out while my wife strips the bed and loads the washing machine.

I change my device over to Group ‘B’ settings because tremor is bugging me this morning, and also because I know my wife prefers my mood on Group ‘B’.

We head into North Walsham and my wife goes into Lidl to do some food shopping (her youngest son and his girlfriend are coming to dinner tonight) while I head off to the local optician to get my glasses fixed (I have a screw loose, but most of my friends already know that).  Then we drive to the tip, but when we get there there is a queue of about 20 cars and the gates have been closed while they move containers around in the yard.  We can’t be bothered to wait so we head off home, stopping at Waitrose to buy some organic full fat milk.  When we get home, there is nowhere for my wife to park her car outside the house so she puts on her hazard warning lights and passes shopping bags to me to take inside.  She grabs hold of the plastic carton of milk and passes it to me, only to find that the carton has split open and leaked milk all over her fabric sample books as well as the carpet in the back of the car.  I manage to cover my feet, the front door, front path and garden wall in organic milk, and I’m starting to lose the plot…  How I stop myself from hurling the leaky container down the road, I really don’t know – it definitely went through my mind!  I grab a bucket from inside the house and dump the container and what remains of the milk into it.  I’m practically incandescent with rage at this point and have to go and sit quietly for a few minutes.

While I’m pulling myself together my wife goes to the tip and also buys the weedkiller we need.  I’m in no mood to tackle the conservatory today.

For those that do not know me, I’m usually a very calm and placid kind of bloke – it takes a huge amount of provocation to make me lose my temper.  I think it could possibly be a combination of device settings and circumstances (provocation) that has sent me over the edge.  Back to Group ‘A’ settings and see if that fixes anything.

Okay.  I have calmed down now, taken the dog for a walk and am feeling more myself again.  Our visitors arrive, we chat, we eat and drink, and they depart.  I’ll keep my settings as they are for the time being.

Another bright morning, sunshine and blue skies.  That’s the only similarity to yesterday, though.  I had a good night’s sleep, so that isn’t to blame.  I feel unable to do anything this morning, except the morning dog walk.  The morning dog walk has to be done.  It’s expected of me, and she wouldn’t understand if I told her “sorry, no walk this morning because I just can’t be bothered”.  Maybe it’s because I overdid things yesterday at the allotment.  Whatever, my tremor is not very responsive to my neurostimulator today.  Persistent in my left leg and right arm.  Switching over to Group ‘B’ settings provides some small relief, but only for a matter of thirty minutes or so.  When you add in the (mild) dyskinesia that comes with it, the benefit of this group of settings over Group ‘A’ is questionable.  I revert to Group ‘A’ setting mid-afternoon.

The dog is getting restless.  Her built-in alarm clock tells her that I should be taking her for her afternoon walk.  I take her out just before 5pm – an hour after she started to nag me.  When I get back, I  load the dishwasher and put it on while I’m still standing.

My wife returns from work and remarks on my mood.  She wants me to try Group ‘B’ settings again, so I do.  Half an hour later she says that I appear happy again, so I will put up with the dyskinesia, self-medicate with alcohol and cannabis and be happy until bedtime!

Bright sunshine greets us this morning – makes a change from the ominous black clouds and torrential downpours of recent weeks.  I feel quite positive this morning and I’m thinking of getting down the allotment this afternoon to do some more weeding and perhaps strim the grass again – it was looking pretty overgrown when I went down there earlier this week.

First things first!  Cup of tea and Nutriblast.  Check my email.  Read the Metro online.  Take the dog for her morning walk.  Popmaster!  Start the car and charge the battery a little.

I spend 20 minutes weeding the front “garden” – I can hardly believe how quickly the dreaded creeper grows and takes over.  My tremor is starting to get stronger in my right arm (it’s already quite prominent in my left leg, but I’m dealing with that okay) so I change my device to Group ‘B’ settings.  Immediate relief on the tremor front, minor dyskinesia in my neck, minor dyskinesia in my right arm.  Bearable!  All my other symptoms (balance, gait, speech, dystonia, stiff and weak muscles) are stable and manageable.  It’s a pretty good day.

I spend almost 2 hours at the allotment, strimming the overgrown paths and trying to reduce the number of weeds attempting to strangle the onions and potatoes.  When I finish I am exhausted, but I still manage to take the dog for her afternoon walk.

I have a bath because I’m covered in green mush (from strimming long grass, nettles and other assorted weeds), and because I’m aching all over.  I then have a sit out in the garden with a couple of pints of apple juice – desperately trying to rehydrate.  I empty the dishwasher and vacuum downstairs before my wife arrives home from work.  I feel I have achieved today!

After dinner I revert to Group ‘A’ settings on my neurostimulator because the dyskinesia in  my right arm is increasingly problematic.

I had planned on doing some more catching up on my blog today, but a phone call from the company that owns the marina where my boat is moored (Bridgecraft) changed all of that.  I had been witholding my mooring fees for the current year because the access road to the marina is in such an appalling state that you need to own a 4×4 to negotiate it, and I’m not prepared to pay for something that I cannot use!  Bridgecraft admitted that the lane was in a poor state, and that they had no intention of making any substantial improvements to it.  They have waived my mooring fees, but I need to find somewhere else too moor my boat from August onwards.  So… I have been scouring the Norfolk Broads forum on the internet to see if anyone was advertising a mooring or had any suggestions as to where there night be one.  I’m still not much further forward – I think I’ll post a wanted advertisement and see  if that brings me any joy.  If you know of any moorings suitable for a 25ft broads cruiser, please get in touch!

I switched over my device to Group ‘B’ settings mid-morning because of tremor, and manage to put up with the dyskinesia that follows on an hour or so later.  It’s getting unmanageable around 4pm, so I change it back to Group ‘A’ again before taking the dog for her afternoon walk .  I’m not feeling too bad motivation wise, but I don’t really manage to achieve anything today.  I’ll empty the dishwasher, vacuum downstairs and have a shave before my wife gets home from work!  I’d better get a move on, because her father and brother are coming over for dinner this evening so she won’t be late home tonight.

Tasks completed, I change back to Group ‘B’ again and reduce the voltage on the left hand side to 1.0v (leaving the right hand setting at 2.0v) – previously it was the left hand side voltage that influenced the dyskinesia in my neck, so I think if I can reduce that (even if it means more tremor in my left leg) then at least I would have better tremor control on the right side.

Evening over, and I’m still on Group ‘B’ settings, so the experiment has been a success.  I’m frankly amazed that I haven’t experienced severe dyskinesia in my right arm and leg – let’s hope it stays that way.  I’m going to change back to Group ‘A’ settings at bedtime, though.

I’m still feeling the effects of overdoing it on Saturday, so I’m lounging around a lot and doing very little.  My wife has taken the morning off work and is busy cleaning the house (which really should be my job, so I’m feeling guilty).  I eventually prise my backside off the sofa (after PopMaster) and take the dog for her morning walk.

When we get back I busy myself reading the Metro online, and editing a couple of photos of the boat cushions that we delivered yesterday so that I can use them to promote my wife’s business on Instagram, Twitter and Facebook.  My tremor is bothersome in my right arm, but I dare not change the settings over to Group ‘B’ at the moment – I changed them over this morning before I got out of bed, and was immediately rewarded with very uncomfortable dyskinesia in my neck, so changed them back again pretty sharpish.

A couple of things that have been bothering me since the last tune up of my DBS device… My balance isn’t great and, although I haven’t actually had a fall, I do tend to hang onto things to keep myself vertical.  In particular I notice myself leaning on the wall when I walk up the stairs.  My gait isn’t wonderful either, and I notice that I tend to drag my right foot slightly when I walk – particularly noticeable when I am wearing my wellies to take the dog for her walk.  My voice has become much weaker and huskier, and I notice people asking me to repeat myself more often. Sometimes, when I’m really tired, my voice disappears altogether, just leaving me with a whisper.  I also have been wheezing a fair bit ever since my operation – I sometimes sound like I’ve just smoked a couple of packs, and I gave up the evil weed over 10 years ago.  I did mention this to Joseph at the NHNN when he reprogrammed me on the 12th May, but he didn’t seem to think it was anything to do with DBS.  It still persists, though, and I think it may have something to do with the tubes they shove down your throat during surgery.

It’s supposed to rain heavily this evening, but the sky is getting very dark after lunchtime so I decide to walk the dog a little earlier this afternoon.  I then spend the remaining time trying to catch up with my blog, plugging a couple more of the gaps…

 

We are off to Brundall this morning to deliver and install some boat seat cushions that my wife has been making.  We have to go to my wife’s place of work in Hevingham to pick the cushions up first, so things are a little rushed in the house this morning – cups of tea (and coffee) are drunk in super-quick fashion, the dog gets let into the back garden for a wee, and then we are out of the door and on our way.

Installing the seat backs is a pain in the bum, but we manage it eventually.  In with the rest of the cushions, one happy customer and a cheque for the balance – result!

An afternoon of paperwork is looming – invoices and quotations for my wife to prepare and I need to do something about transferring her business bank account from the absolutely useless NatWest to something rather cheaper (free banking!) and, hopefully, more competent.  I also need to pay the river license to the Broads Authority for my boat.  I’m still struggling a little bit with low motivation, but am managing to make myself do a few things, so that’s good.

Just after lunch I decide to change my settings to Group ‘B’ (my happy settings) because tremor is pretty strong in my left leg and right arm.  I know I won’t be able to tolerate them for very long because the dyskinesia in my neck will appear in no time at all.

I apply online for a business bank account with Yorkshire Bank, pay my river license and then switch my settings back to Group ‘A’ – the discomfort of a twitching neck is greater then the discomfort of the tremor.  Time for a little self-medication in the form of alcohol (a beer) and cannabis.

I tried turning my neurostimulator off last night to see if the new settings were causing me to have difficulty in falling asleep, but it was just as difficult to fall asleep with the tremor running riot.  Perhaps it would have been better if I had self-medicated before going to bed, but by the time I thought of that, I couldn’t be bothered to go back downstairs.  Anyway, I did fall asleep eventually, and slept pretty well until 5am, when I turned my device on (Group ‘A’ settings!) and then dozed until 9.30am – lazy git!

It’s only when I go to get out of bed that I’m reminded that I might possibly have overdone things yesterday.  Every fibre of me aches, and my back, arms, legs, neck are all as stiff as a very stiff thing.   It’s lucky that I am married to the most fantastic woman on earth who makes me my tea and Nutriblast, and allows me to slob out on the sofa while she goes about finishing off the cast iron fireplace in our bedroom, does the washing, vacuums everywhere, etc. etc.

We are going out to see my wife’s family this afternoon – it’s her niece’s birthday and there’s a bit of a get-together over at her brother’s house.  I change my settings to Group ‘B’ because of the superior tremor control, but also because my wife says that I am more cheerful on those settings (apparently I’m rather monosyllabic on the Group ‘A’ settings).  All is well for the first couple of hours, but then dyskinesia in my neck becomes a bit of a nuisance, and I have to switch back to Group ‘A’  again.  I think we will have to book a return visit to the NHNN for reprogramming sooner rather than later.

As the day goes on my limbs feel as though they are loosening up, although I am having some pretty uncomfortable cramps in my hip.  Hopefully I’ll be feeling a bit more normal by tomorrow.

I’m still feeling positive this morning, and am determined to take advantage of this feeling while it lasts.  My wife has been feeling a bit swamped of late – trying to build up her soft furnishings business, deal with the reality of my Parkinson’s Disease, run the house (because, frankly, I haven’t been much help), help her sons out (because that’s what mothers do) and 101 other things besides.  I know that she hates driving around in a dirty car, and her car is minging at the moment – covered in bird shit from when she parked under a tree in the village hall car park last week, full of fabric sample books and desperately in need of a good vacuuming out, upholstery in need of cleaning – so I made up my mind to give her car a thorough clean today, make her feel a bit better about it.  Before we have even finished our morning tea/coffee it’s chucking it down.  There’s no space outside the house to park her car while I wash it.  Obstacles to my achieving my goal.  Normally this wouldn’t be a problem – my lack of motivation would welcome the excuse to do nothing – but the fact that I’m feeling more positive, more motivated, has to be taken advantage of.  My wife has gone to North Walsham to pay some cheques into the business account.  When she returns I am going to move my car to the village hall car park and park her car outside the house, and I’m going to wash the bloody thing even if it is raining!

My wife returns and I get her to park her car in place of mine.  It’s absolutely hammering it down.  She wants me to hang some pictures in the lounge, so I get on with that while I wait for the weather to improve.  I hang a couple of pictures that my aunt, Carolyn Graham, gave to me – lino cuts that she did when she and my uncle, Bob Graham, were living in Somerset before returning to Australia.

She is from the artistic side of the family.  My uncle is a cartoonist and illustrator, and has many successful children’s books under his belt.  Their son (my cousin), Peter Graham, is a well known artist.  My other aunt paints for her own pleasure.  My older brother is a graphic designer.  Me?  I have difficulty painting a wall.

I also hang a couple of old metal enamel signs that we saw, liked and bought many moons ago.

By this time it has stopped raining and the sun is trying to put in an appearance, so I get stuck in and wash my wife’s car.  By the time I’m finished (outside only) I’m completely exhausted, but pleased that I have managed to achieve what I had set out to do.  I take the dog for her afternoon walk, and then collapse (honestly) into a bath.

My wife dishes up dinner, and I realise that I really have overdone it when I scarcely have the strength to eat.  Time to collapse on the sofa, have a beer, switch my device over to Group ‘B’ (superior tremor control) and watch an episode of House Of Cards before bedtime.

I switched back my device to my latest settings (Group ‘A’) before I went to sleep last night so that it doesn’t result in my thrashing around and shouting out in my sleep like it used to do.  I slept well, only waking briefly at 4.30am.  I get up at 9am. Dress.  Go downstairs.

I’m feeling a little better than I have been – as though I could possibly achieve something today!  If you have been reading my blog for the last few days, you’re probably thinking “about time, too!”.  Me too.

I jump start my car from my wife’s car before she goes to work (my car has been sitting unused for so long that the alarm has flattened the battery) and have a quick spin around the block to charge it up a little.  I walk the dog.  I check my email.  Check Facebook.  Read The Metro online.  Tremor is getting stronger in my right side, so I switch my device to Group ‘B’ again – tremor subsides.  The post arrives, and in it is an adjustable spanner I ordered to fit the gas bottles that run the boiler (no mains gas in our village) – I’ve been holding off changing over the empty bottle because I almost rounded off the nut last time.  I change over the empty bottle without rounding off the nut any further!  I rang Calor and ordered a couple of gas refills!  I’m on a roll now.

I actually listed the stove pipe on eBay!  I fill the dishwasher.  Put the dishwasher on.  Empty the dishwasher.  Walk the dog (afternoon edition).  Vacuum upstairs.  Vacuum the hall , stairs and landing.  Vacuum the lounge.

I’m exhausted, but happy that I’ve been able to do stuff today.

Dyskinesia, which has been slowly returning in my neck, returns to my right side so I return to Group ‘A’ settings on my neurostimulator.  Perhaps this is the solution until I can afford to go back to the NHNN for a re-tune… keep switching back and forth between the two settings groups on my device.  Because it seems to take a good 24 hours for any problems to emerge following a change in settings, perhaps I need to book appointments on two consecutive days in future – I’ll think on that one.

I struggled a little bit with dropping off to sleep last night, lying wide awake for over an hour.  When I did eventually sleep, I slept well and woke around 5.30am.  I managed to sleep again until 8.45am, so I feel well rested.

Motivation is the biggest problem at the moment, because I simply don’t have any.  My get-up-and-go has fallen flat on it’s arse.  I have a list of tasks for me to do – most of them are incredibly simple and should pose no problem for me to achieve – but I’m not even going to list them here, because I know I’m not going to achieve any of them today.

Correction!  I’m only going to achieve two things today – the dog’s morning walk and the dog’s afternoon walk.  After I return from the morning walk I decide to do some fiddling with my neurostimulator settings to see if I can improve my mood.  My latest settings (Group ‘A’) are great in that I no longer suffer with the dyskinesia in my right side, but tremor has crept back fairly quickly.  I feel that tremor control was better on my old settings (Group ‘B’), so I activate Group ‘B’ on my device.  I can feel the new (old) settings kick in with a bit of a tingle and my tremor is instantly better.  I am at the upper limits of adjustment within Group ‘B’ – left side is 1.7v, right side is 2.0v.  I will watch out for dyskinesia, but for the moment these settings are superior.

I pop round to my neighbour’s to scrounge a 1st class stamp (our Post Office is still closed following the robbery on Monday) and while I am chatting to him I do notice a little dyskinesia in my neck – very minor and not painful (or even uncomfortable) but something to keep an eye on.

So, we will be getting a woman prime minister.  Theresa May and Andrea Leadsom are the 2 candidates in the race for the top job.  The best of a fairly poor field, but I don’t know enough about either of them to favour one over the other.  I believe that Theresa May has been an absolute disaster in the Home Office, so she’ll probably get the job!

When my wife returns from work, we go food shopping in North Walsham.  While we are out I’m aware that dyskinesia is becoming more of a feature and the dystonia in my right foot is also more uncomfortable, so no doubt I’ll soon have to go back to Group ‘A’!

I have felt supremely unmotivated today – happy just to sit with my iPad and laptop watching the Oscar winning performance of a certain squirming British ex-prime minister as the contents of the Chilcot enquiry are made public and digested by the media.

I slept pretty well again last night and was hoping for a more positive outlook this morning, now that I have increased the stimulation from my device to the maximum.  No such luck.  Tremor is still fairly troublesome on both sides, but let’s put it into perspective…  I can sign my name and write legibly, and I don’t spill my tea carrying it from the kitchen to the lounge!

I have several things that I need to do today:

1. I need  to locate an email from the bank, and print off a number of forms for us to complete and return.
2. I need to list a stack of insulated stove pipe on eBay – I have been meaning to do this for several months but always seem to find something else more pressing to do.
3. Vacuum downstairs.
4. Shave.
5. Get the washing in from the washing line.

I manage to avoid doing anything constructive, although I do take the dog for her 2 walks.  It’s 4pm before I get around to locating the email from the bank.  I print the forms out and suddenly get a surge of motivation.  I get the washing in, vacuum downstairs and then have a shave!  Incredible!  I still manage to avoid listing the stove pipe, mind you.

Another good night.  These new settings certainly seem to be agreeing with my sleep patterns.  I’m getting more and more unbroken sleep, I’m not thrashing around and calling out in my sleep and neither am I waking up in discomfort.  I’m a little bit disappointed that my tremor is coming back again so quickly, and I appear to be getting towards the upper limits of adjustment with my device…

I have a moderate tremor going on in my right arm as I return from my morning dog walk, and I’m tempted to increase the voltage on the right side  I decide to sit quietly for a while and see if it will calm down a little on its own.

I send a text to my son (who is on his first holiday abroad accompanied only by his girlfriend) and one to my daughter.  I have a FaceTime call from my daughter, which is nice.  A couple of texts fly between me and my mate Gerry at Fig Tree House.  Then I pick up my copy of the letter from Joseph at the NHNN which was sent to my GP following my re-programming on the 28th of June.  I had given it only a cursory glance when it arrived at the weekend – it merely contained a summary of the settings programmed into my device following my appointment.  I read the letter in detail, and am now confused because the settings detailed in the letter do not seem to correspond with what Joseph had told me last week.  I decide to check, using my remote control, the minimum and maximum voltages permitted on each side of my body.  Sure enough, they do not correspond to the values stated in the letter.  Completely different.  I’m going to have to email Joseph and see why this is.  I’m also alarmed to note that the battery level on my device has fallen to 2.99v already – it was 3.01v just a few days ago.  If I turn my (right side) voltage up to the maximum permissible then I will be receiving 2.9v – this seems a little too close for comfort to the battery level remaining.  The battery is supposed to last between 3 and 5 years – it’s been less than three months since my hardware was implanted.  At this rate I’ll have to have the neurostimulator replaced within 12 months.  I’ll raise this concern with Joseph as well – see what his comments are.

I’m feeling a bit low today.  The discovery that the hospital letter doesn’t tally with either my understanding of my re-programmed settings or with the actual settings held in my device doesn’t really help.

We are going to dinner at my wife’s eldest son’s house tonight, so I go for it with my device settings and whack both sides up to maximum (1.9v on the left, 2.9v on the left).  Still my tremor isn’t completely calmed.  I can see myself going back for a tune-up sooner rather than later…

We are no stranger to sirens in this village.  We are evidently one of the routes that the ambulance drivers habitually use, and we generally have 1, sometimes 2, ambulances per day pass through the village with sirens blaring and lights ablaze.  We weren’t unduly surprised to hear a siren approaching the village this morning, just as we were sitting down with the first brew of the day.  The surprise was that the siren stopped in the middle of the village, outside our little Post Office.

I saw the police cars (2 of them) outside the Post Office as I took the dog for her morning walk, and took a snapshot on my phone to post on Twitter – perhaps someone there would shed some light on what had happened?  We continued our walk to the field by the village hall, and came across 2 more police cars in the village hall car park, and half of the car park had been cordoned off.  As we returned to the house, a police dog unit vehicle arrived.  What on earth could have happened?  As soon as we got home I posted the picture I had taken on Instagram and Twitter.  Within 5 minutes I received a Tweet from the Eastern Daily Press asking if they could use my photo.  It transpired that the postmaster had been attacked and knocked unconscious as he arrived for work this morning.  His assailant had taken his keys and then burgled the Post Office.  I do hope he is okay – I often have a good old chinwag with him if I pop in there for a stamp or a card…  It’s a shock to think this could happen in our sleepy little village.

I have a fair bit of tremor on both sides this morning.  I’m not sure if the events of the morning have had an impact on it, but it certainly won’t have helped.  It seems a little stronger on my right side than on my left today, so I increase the voltage to my right side by 0.1v and leave the left side alone for the time being – if I provoke any side effects I need to know which setting has caused it.  My device is now delivering 1.8v to my left side, and 2.8v to my right.

We are going to The Vernon Arms this evening to meet a local couple, friends of one of our neighbours.  He is also a Parkinson’s Disease sufferer, and is currently being evaluated for deep brain stimulation at the NHNN.  He and his wife want to talk about the operation, and how effective it has been for me.  I had better not self-medicate prior to our meeting because I want him to see exactly how my condition is with DBS but without any medication at all.  I have a bit of tremor in my neck and jaw this afternoon, and I turn up the voltage a click on the left hand side just for a moment to see if that will calm it.  It does.  I turn it back down again for the time being – I may increase it later on tonight if there have been no adverse effects from my earlier increase of stimulation to my right side.

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We get our deserved lie-in this morning and don’t rise until gone 10am.  Still feeling pretty shattered, though.  I can’t do late nights like I used to be able to!

My wife makes the tea and coffee and then disappears off to Hevingham to collect our dog, leaving me to catch up with my blog (which I am doing!).  I also empty the dishwasher and put the breakfast dishes and mugs in there.

My tremor is bothering me still.  It’s mainly in my left leg, although my wife said that she noticed I had a significant tremor in my right hand last night when I was holding a torch while trying to get my mother out of my brother’s van.  Possibly because I was incredibly tired at that stage.  I put up with it for a while and then decide to increase the voltage on my left side by 0.1v (now 1.8v left, 2.7v right).  There is improvement, but I can still feel the shaking.  I’ll resist the temptation to add another click or two until later in the day.  Tremor in my right side is mainly under control, but it re-emerges from time to time just to let me know it’s still there.  The difference between my pre-operation tremor and the post-operation tremor is control.  Before my operation the tremor had become so violent that I was unable to control it.  Now when I get tremor, I can generally calm it without too much trouble.  When I take my mind off it, then it creeps back again.  It’s the degree to which it creeps back that determines whether or not I increase the voltage on my neurostimulator.

It’s a fairly bright day here today.  My wife returns with our dog, who is pleased to be home and pleased to see me.  I let her take me for a walk before the weather decides to change.

I’ve now had some dinner, opened a beer and mildly self-medicated with cannabis, so I’m nicely relaxed and feeling no urge to change my device settings at the moment.

Today we are travelling down to Winchester to celebrate my Aunt’s 9oth birthday.  My brother is driving us down there in his van, along with George (his Gordon Setter) and my mother (who has advanced Parkinson’s Disease).  We have to leave our dog with my wife’s youngest son and his girlfriend for the day, so go to Hevingham first to drop her off, and then to Stalham where my brother and mother reside.  I’m glad not to be driving – I’m definitely not up to driving such a long distance at the moment.  It will be interesting to see if the excitement of the occasion (it’s been several years since I have seen my Aunt and my cousins) causes any impulsive behaviour to emerge.

It’s a long drive – 220 miles each way – and it takes us nearly 4 and a half hours (including a pit stop at a McDonald’s along the way).  We arrive in Winchester to find many of the roads in the city have been closed for some sort of event.  Amazingly we manage to find our destination (it was a complete mistake, but life’s like that sometimes) and find parking within a stone’s throw of the Hotel Mercure, where our family gathering is taking place.  We transplant my mother from the van to her wheelchair without too much drama, and make our way to the bar!

The next few hours pass by with startling velocity.  It’s really good to see my aunt and cousins again, and to meet all of their extended families.  In most cases we have met before, in the dim and distant past, but we haven’t been in touch.  Girls and boys that I remember have become men and women, mothers and fathers.  The next generation shuffling up the ranks.

My tremor is still present but not too distracting, so I resist the temptation to tinker with the settings.  I haven’t had any recurrence of dyskinesia or impulsive behaviour and don’t want to risk provoking either one of them.  I have noticed a slightly manic quality to my laugh, but nobody else seems to notice it, and my wife would certainly tell me if I were acting out of character.  My balance is relatively good today, but my walking feels a little stilted – I’m not tripping or stumbling, though, so it can’t be too bad!

After eating and drinking and chatting it’s time to return to Norfolk, and we get mum back in the van and say our goodbyes.  It’s 1.15am by the time we get back to my brother’s house in Stalham.  Mum has had a ‘freezing‘ episode, and it takes us almost half an hour to get her out of the van and into the house.  By the time my wife and I get home and get to bed, it’s almost 3am.  A bit of a lie-in is called for in the morning, methinks!

My recent reprogramming has definitely improved matters – I can now leave my neurostimulator switched on all night without it causing me to thrash around and shout out in my sleep, and the troubling dyskinesia, with which I had been suffering, is now a distant memory.  Tremor has been creeping back, though, and I decide to increase the voltage on both sides to see if it can be moderated without causing any side effects.  Joseph (at the NHNN) has given me a bit more control over my device: I am now able to adjust the voltage by 0.6v above and below the settings that he programmed into my device in steps of 0.05v which gives me a wide range of adjustment.  I left hospital on Tuesday with my device delivering 1.5v to my left side, and 2.5v to my right.  I increase the voltage by 0.1v on both sides (now 1.6v on the left and 2.6v on the right) and feel an immediate reduction in tremor.  I’ll let things settle and see how my tremor is at the end of the day.

I go about my daily routine.  The dog takes me for a walk – it’s a sunny morning and no great hardship.  I load the dishwasher and switch it on.  Bring in the washing from the washing line, and replace it with the next load from the washing machine.  I’m definitely feeling a bit more motivated than I have been, and suspect this is due to the increased stimulation.

I take the dog for her afternoon walk, and then go to the allotment to check on the weeds and pick some strawberries.  There are a few broad beans as well, so we can have those with our dinner tonight.

I chuck a couple of lamb shanks in the oven and prepare some veg – new potatoes, carrots and the broad beans from the allotment.  While everything is cooking I manage to make a start on the ironing!  Definitely more motivated!

I still have a fair bit of tremor on both sides, so whack the voltage up another 0.1v on both sides (1.7v left, 2.7v right).  Again, the reduction in tremor is instantly noticeable.  No immediate side effects – I’ll keep a close eye on things, because they tend to creep up on you!  In the meantime, a little self-medication is in order…

I had a lousy night.  I couldn’t get to sleep, and just lay there wide awake for over 2 and a half hours.  I wasn’t in any discomfort.  Had no tremor to speak of.  Just wasn’t able to go to sleep.  When I did eventually drop off, I woke a number of times so felt as if I’d been awake for most of the night.  On the plus side, I didn’t thrash around or shout out in my sleep!  I didn’t get up until gone 8am.

I notice that tremor has crept back slightly in my left leg, and the merest suggestion of dyskinesia in my right arm.  So much better than prior to yesterday’s tune-up, though!  I’m exhausted after yesterday’s travelling and last night’s lack of sleep, and come lunchtime I’m fighting to keep my eyes open.  I resist the temptation to have a quick 40 winks – if I sleep now, I’m worried that I won’t sleep tonight.  I don’t know if my energy or motivation has been positively affected just yet – it’s difficult to know, when I am feeling so fatigued in any case.

I now have a complete new set of settings – Group ‘A’ on my remote control.  I am currently receiving 1.5v on my left side and 2.5v on my right side, but utilising a different set of contacts on the electrodes than those in Group ‘B’.  Group ‘B’ settings are my previous settings, in case I need to revert to them at some stage.  I’m not going to fiddle with any settings for at least a couple of days, let everything settle down again and then see where we are at.  It’s a major relief to have almost eliminated the dyskinesia I was suffering, and having the tremor more under control is most welcome as well.  Dystonia is still nagging at my right foot, but it is manageable.  My balance seems a little better today, although my voice sounds a little indistinct (to me).  Some of this may be due to my current tiredness.

 

We are off to the NHNN today for a bit of device tweaking. I’m awake at 6am, but snooze (I switch my neurostimulator on to control the tremor) until the alarm goes off at 7.30am.

My wife makes the tea and coffee and then takes the dog to Hevingham where she will stay with her youngest son, his girlfriend and their 2 dogs until tomorrow.  I make sure we have all of the essentials for the trip: train tickets, sandwiches, phones, phone chargers and iPads.

We arrive at the station with literally seconds to spare, walking onto the platform just as the train draws up.   The journey passes quickly, and before long we are in Queen Square for my 2pm appointment.

Joseph listens to what we have to say as we report on settings, effects and side effects.  Then he is busy with his device programmer.  I alternate between uncontrollable shaking and an almost unnatural calm as he strives to find the most effective settings for me.   Eventually he appears satisfied, and checks on my walking and voice to ensure that they haven’t been adversely affected.   We are sent away for an hour to see how the new settings settle in, and spend our time in the cafe having coffee and then walking around Queen Square in the sunshine.  We report back.  No further adjustment is considered necessary, and Joseph gives me a little more adjustment to play with, should I need to do so (0.6v either side of the settings, rather than 0.4v as previously) and also allows me to fine tune adjustments in 0.05v steps, rather than 0.1v steps.  All in all, a successful visit.

We depart the NHNN and decide to walk to the Blues Bar to while away a couple of hours until we catch the train home.  It’s only a mile away and we have over an hour to get there before doors open, but it’s a major struggle for me.  We sit and rest for a while.  On arrival we bag our favourite table and I revitalise myself with a pint of Adnams Ghost Ship.  A couple of pints later we make our way back to Liverpool Street station and board the train back to Norwich.

Symptoms: tremor – virtually none;  dyskinesia – virtually none;  dystonia – virtually none;  balance – fair to middling;  energy and motivation – yet to be determined.

We arrive home at 11.30pm and get ourselves straight off to bed.  This time I’m leaving my device switched on to see if the “thrashing around” side effect has been sorted out as well.

Slept right through until 7.15am, which is amazing!  I’m going to Brundall with my wife this morning to collect some seat cushions from a boat – she is going to make new covers for them, and also replace some of the foam within.  My wife takes the dog for a quick walk while I sit and drink more tea than is advisable just before a 1 hour trip in the car!  Sure enough, my wife has to pull over half way and wait for me while I go for a pee in a field.  I manage to give my head a good clout on an overhanging branch while I’m negotiating the ditch and hedge that surrounds the field, so I’m not overly happy about that!

Symptoms seem reasonably well managed this morning – pretty much as they were yesterday.  We collect the seat cushions and I almost topple into the water when I lose my balance for a second.  I managed to grab hold of something to arrest my fall, so I’m okay.  My wife doesn’t notice, so I get away with it (until she reads this blog, and then she’ll tell me off for not telling her).

I’m wishing the day away.  Tomorrow we are going back to the NHNN to see Joseph and have my device adjusted.  I am really hoping that he can do something to alleviate the dyskinesia problem that I have been having.  Anything else will be a bonus.

A couple of stops on the way back home to look for picture frames (we buy one) and stock up on beer (we buy more than one).  My wife drops me off at home and disappears off to do another job up the road on the Gunton estate, leaving me to take the dog for her afternoon walk.

We have an early dinner when my wife returns, and then we sit with my wife’s copious notes (and my blog) and make sure that we have fully documented all of the settings that I have used on my device (along with the effects and side effects) since I last visited Joseph, so that we can give him all of this data to reference when re-programming me tomorrow!