Month: September 2016

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.