Month: October 2016

I slept better last night – sleep came quickly, and I didn’t wake until gone 6am.  My Group “B”settings weren’t causing me any issues – no dyskinesia to speak of, and my left leg tremor was minimal.  It wasn’t until I was downstairs, sitting on the sofa having my first cup of tea, that I noticed some muscle pain in my right chest.  It only manifests itself when I try to move after sitting still for a while, and it’s like a vicious cramp.  I can’t think of anything that I have done that could have brought it on, aside from changing my neurostimulator over to Group “B” yesterday.  If it persists, I’ll have to try switching back to Group “A” settings to see if that helps – it really is very painful!

My wife goes off to work, and I take the dog for her morning walk before my morning date with PopMaster.  I’m really not feeling like doing very much today – every time I move, the muscle pain in my chest takes my full attention.  I have a number of emails, messages and comments to reply to – a couple of people on Instagram want my help and advice on how to persuade their relatives (who have Parkinson’s Disease) to try cannabis to see if it will help with their symptoms, and there is a lengthy comment on my blog from someone who is approaching deep brain stimulation surgery and has a few questions for me.  I busy myself for a while, interacting with my readers – pleased to be of some use to somebody.  I fill the log basket with wood – it’s definitely getting a tad chilly in the evening now, and I do love having the woodburner going.

By the time my wife returns from work, I’m in quite a bit of discomfort with my chest, and also the dystonia in my right foot is making its presence felt.  After dinner, I try a little self-medication (cannabis) to see if that helps matters.

My wife is going swimming with our granddaughter this morning, so the dog and I have the house to ourselves.

I slept reasonably well again, with reduced voltages and a little cannabis to help things along.   It took me a little while to get off to sleep because my left leg was restless – I eventually increased the voltage on my left side in an attempt (partially successful) to calm it down.  When I woke, I was in quite a bit of discomfort because of dyskinesia in my neck – cause and effect…  I decide to change  over to my Group “B” settings for a while and see how I feel.  I leave the voltages alone for the time being (2.15v on the left, 2.2v on the right).  Tremor seems quite well controlled, but feels quite close to the surface on my right side – the dystonia in my right foot is also a little bit worse.  Dyskinesia is still afoot, but it’s manageable.  My balance feels a little better, but I notice my walking is not so good when I take the dog for her morning stroll.

My wife returns from swimming, and then we are off out to Norwich to go shopping with her youngest son and his girlfriend – It’s good to get out of the house and breathe some city air for a change (well, it’s good to get out of the house…).   Then it’s a quick visit to my wife’s workshop in Hevingham to load her car with fabric samples and the paraphernalia of her trade – she has an appointment in the morning to measure up and quote for some curtains.

Tremor is still well under control on my left side (for a change), but my right side is less good.  If it weren’t for the dyskinesia, I’d be tempted to crank the voltage up by a click or two.  Bedtime is looming, so I self medicate (cannabis) and leave my settings be – at least for the time being.

I had another decent night’s sleep, not waking until 6.30 to go to the smallest room, and then getting back to sleep for another 2 hours.  I have a hefty amount of tremor in my left leg, so turn my neurostimulator back up to it’s daytime voltages (1.95v on the left, 2.3v on the right).  Things calm down a little on the tremor front, and I get up, get dressed and go downstairs.

It’s the weekend, which means I feel like a bit of a spare part while my wife does her impersonation of a whirlwind – stripping the bed, doing the washing, cooking food to take over to her eldest son’s this evening (we are invited to dinner, so my wife is making desserts and a salad), cleaning, etc. etc.  In the midst of doing all of the above, she takes the dog for her morning walk and then goes for a half hour run..

While she’s out having her run, I decide to give my hair a bit of a trim (before she cleans the bathroom), so out with the clippers, and 15 minutes later I have a grade one buzzcut – nice!  I clean up after myself, and then adjourn to the back garden, where 2 rather large piles of dead leaves await my attention (thankfully there’s still no wind here, otherwise my leaf piles would have been redistributed).  I scoop them up and bag them, and then break all the rules by putting the bags of leaves in the bottom of my wheelie bin and plonking a sack of household waste on top of them.  I fill the log basket from the pile of wood that’s stacked against the wall in the back garden, and then figure I need a rest.

The dog reminds me that she’d very much like to go and chase her ball, so I take her for her afternoon walk, and throw the ball for her like the obedient human that I am.  Dyskinesia is still making it’s presence felt, but it isn’t so severe as it was yesterday.  Dystonia is still under wraps, which is brilliant.  Balance doesn’t seem quite so bad, but I still think my walking isn’t great – it does vary throughout the day, though, so perhaps I’m being a little too critical.  Mood is ok, motivation is ok, energy is pretty damn low!

I slept right through last night.  I woke up while it was still dark, thinking it was 3am or 4am – a quick glance at the alarm clock revealed it was almost 7.30am!  I turned my neurostimulator down last night, before getting into bed – 1.5v on the left and 1.7v on the right.  I also self-medicated with cannabis.  Something obviously worked because I got off to sleep without trouble, slept right through without being woken by dyskinesia, and feel much better this morning (apart from the ever present tremor in my left leg).  I restore my settings to their previous values (1.95v on the left, 2.3v on the right) and then I’m ready to face the day.

I’m not sure what to do today.  Now that the latest video has been published, there’s a bit of a void.  There are plenty of jobs waiting to be done around the house, but nothing that doesn’t require major disruption, and I can do without major disruption at the moment.  I end up bringing the wood in for the fire and building the fire for lighting this evening, and then sweeping up (the majority of) the fallen leaves in the back garden.  I just leave them in a big heap for the time being, and hope the wind doesn’t get up and blow them all over the place again before I’ve had a chance to bag them up and put them in the bin!  I’m thinking of another couple of DBS videos that I’d like to do, so perhaps I can get on with scripting those next week – all of this video work isn’t getting the house finished, but it is giving me some sense of purpose.  I feel as if I’m struggling a little with my motivation, but I am still managing to get stuff done, and that’s the main thing.

My left leg tremor is persisting, and I also have (from time to time) some tremor in my right arm.  Dyskinesia has got quite a bit worse since I set my voltages back up this morning.  I’m almost (but not quite) throwing my drinks around as I raise them to my mouth – not quite bad enough to make me change my settings again.

I intend reducing my voltages again at bedtime, and also self-medicating with some cannabis – let’s hope it’s as effective tonight as it was last night!

My wife had a lousy night again, and that meant that I also had a restless and disturbed night.  I’m definitely going to be self medicating (cannabis – and probably alcohol, too) tonight.

My wife disappears off to work, and I do the usual dog walk and PopMaster, and then sit myself down at the computer to finish editing my video.  I finish the sub-titles and then double check that the words on the screen match the words that I’m saying (they don’t, and I make the necessary amendments) and that the words on the sub-titles are all spelt correctly (they’re not, and I make the necessary amendments).

My wife’s grandma has had a comfortable night, and they are going to get her up and walking today – It’ll be such a relief if she makes a good recovery from her fall; I know that my wife is really stressed about it at the moment.

My tremor seems a little stronger today (left side and right side) but it’s more than likely down to stress rather than any failing of my DBS to keep things in check.  I’m certainly not about to make any changes right now.  Dystonia is also a little more noticeable, but I’m coping.  Dyskinesia is mostly not too much of a problem – I just tend to windmill about with my right arm when I’m getting up from the sofa, which is probably amusing to watch, but isn’t really very funny from my perspective…

Before I know it, it’s 4pm, and time to take the dog out again before it starts to get dark.  When I return, I publish my video “Deep Brain Stimulation (DBS) Side Effects” to YouTube, put links to it on my Instagram, Twitter, and Facebook accounts, and then post messages in the various Parkinson’s Disease/DBS groups on Facebook and Yahoo Groups.  It’s amazing how quickly the video starts being viewed by people, and the comments start to come thick and fast (positive comments, by and large).

We eat dinner, chill with a beer or two, and then I self-medicate and get myself into bed – hoping for a better night tonight!

It’s our 3rd wedding anniversary today, but there’s really nothing to celebrate…  My wife’s grandma (she was 100 years old this year) had a fall last night and broke her hip, so now she’s in Basingstoke hospital and due to have surgery this afternoon.  My wife is worried sick, as you can imagine.

I re-arrange the lounge and dining room this morning, trying to create a space for me to film my “DBS Side Effects” video.  Then I spend a couple of hours filming take after take after take – wide angle and close-up.  I import the video to my MacBook, and make a start on the editing process.  I had hoped to be able to publish the finished video today, but then I’m always optimistic – I tend to forget how long these things take!  The day passes in a blur, and it’s soon time to take the dog for her afternoon walk – the evenings are really closing in now, and this weekend the clocks go back an hour – next week it’ll be getting dark soon after 4pm.  By the time my wife gets home from work, I have finished the basic edit – it just remains for me to watermark the video (so that people don’t just steal it and brand it as their own – live and learn!) and then sub-title it (because I feel that my voice can be a little difficult to understand).  I concede defeat around 9pm, and will finish it off and publish it tomorrow!

I had intended booking us a romantic anniversary meal over at The Vernon Arms this evening, but my wife just doesn’t feel like celebrating at the  moment – and I can’t say that I blame her.  We have a Lidl paella, and crack open a bottle of beer – the champagne will keep for another day.

Not quite such a bad night last night – I certainly woke up a few times and I certainly had some dyskinesia, but I felt relatively well rested when I woke just after 8am.

We are having our granddaughter here for the afternoon, so I plan to film a couple of shots that I have in mind for the “DBS Side Effects” video before she arrives.  I want to get some footage to illustrate my balance issues and my walking, and since these are both pretty rubbish at the moment, I resolve to do that before they suddenly improve!  I know that my balance is most noticeable (to me) when I am climbing the stairs, so I set the camera and tripod up at the top of the stairs and film a couple of takes of me coming upstairs and using the wall for support.  I think I notice my walking the most when I take the dog for her walks, so I venture onto the streets of Southrepps (which are, mercifully, quiet this morning), set up the camera and tripod in the lane which leads to the village hall, and film myself walking up and down the lane (from several different angles).  I should be able to get something usable from that.

Dyskinesia has receded slightly since yesterday, and tremor has returned (slightly), principally in my left leg.  I’m going to leave well alone, though, because I don’t want to make any changes that will impact on me negatively.  The dyskinesia is a nuisance, but I can deal with it.  The tremor is bearable.  Everything else seems pretty stable at the moment.

Our granddaughter arrives, and while my wife is keeping her entertained, I import this morning’s video onto my MacBook.  Not a lot else, video-wise, is going to get done today!

It’s our 3rd wedding anniversary tomorrow, and I haven’t had a chance to get out to the shops on my own recently, so I disappear off to North Walsham to buy a gift, card and flowers while my wife slaves over a hot stove preparing our evening meal.

I had a lousy night’s sleep.  Self-medication helped me get off to sleep without too much trouble, but I was awake and restless many times during the night, and thrashing around a bit with dyskinesia in both my right arm and my neck – most uncomfortable!

My wife is up and out early – she’s babysitting our granddaughter today and has to be in Hevingham (20 minutes away) by 8am.  I get up at 8am, wander downstairs and make myself a cup of tea.  I’m glad I didn’t muck about with my settings yesterday (which would have resulted in my increasing the voltages) because I think my dyskinesia would have gone through the roof.  It’s certainly worse on Group “A” settings than it was on Group “B”.  Tremor control does seem a little better, though.  Dystonia is very slightly worse, but definitely bearable.  Balance and walking are still a bit rubbish, but I’m not tripping or falling, just stumbling from time to time.  My mood is slightly better (I’m not quite so withdrawn) and motivation has also improved.

I take the dog for her walk, listen to PopMaster and check email and social media – my video is doing well, over 600,000 views now.

I remember one or two additional details that I wanted to include in my “DBS Side Effects” video, and spend some time researching it on the internet, and then making adjustments to the script that I have already  prepared.  I had intended doing some filming today, but my wife has returned with our granddaughter, so my “studio” (the lounge) is scattered with toys and various baby paraphernalia, so it will have to wait until another day (tomorrow?).

Evening rolls around.  I’m still suffering with dyskinesia, but I’m coping with it so I don’t think I’ll turn the voltages down (just yet).  I light the woodburner (it’s definitely feeling Autumnal), and think about a little self-medication…

I checked out the ATTN: Facebook page this morning to see if they had published the video story about me – they said they intended to do so over the weekend.  Sure enough, I found it a couple of pages down from the top.  It’s an edited version of my original Parkinson’s Disease Tremor Control video, with some additional images, and a few seconds of footage taken from the Skype call which we had on Thursday evening.  It hasn’t been published for 24 hours yet, and already it has had almost half a million views and been shared more than 10,000 times – looks like I’m going viral again!  I post links to my Facebook pages, Instagram and Twitter, and then spend some time reading the comments and replying where necessary.

Tremor is more pronounced this morning, both in my left leg and my right arm.  Everything else (dystonia, dyskinesia, balance, walking, mood, motivation, energy…) seems pretty much the same.  I decide to switch programs back to my Group “A” settings and see what happens.  I feel a good old tingle on my left side as the other program kicks in, but other than that, there doesn’t appear to be any immediate change.  Half an hour later, I notice that tremor has all but disappeared from both my right arm and my left leg, which is brilliant!  I will just have to wait and see if it comes back once my brain has become accustomed to the change in stimulation.  I’ll leave the voltages alone (left side 1.95v, right side 2.3v) and adjust them later, if necessary.

We go out to dinner at my wife’s youngest son’s house in Hevingham, and get to see our granddaughter at the same time, so that’s a bonus.  My tremor remains fairly well controlled, so I don’t make any adjustments to my device.  Let’s hope my sleeping is good, too.  I mildly self-medicate with cannabis when we get back home, just to ensure I can get off to sleep without any trouble.

I wake with the usual left leg tremor.  I know I won’t get back to sleep again, but it’s Saturday and I’m having a lie-in.  I eventually crawl out of my pit at 9.30am.  The sun is shining, although there are a few ominous looking dark clouds.

My wife takes the dog for a walk, while I drink my tea and Nutriblast and check my email.  I still have a little dystonia in my right foot, and dyskinesia in my right arm, but tremor is well under control on my right side.  There is still some left sided tremor, but only in my leg, and it’s manageable.

We got out to Lidl in North Walsham to get some groceries – my wife remarks that my walking seems a little better, and I’m more upright than I have been lately.  She also thinks that I’m a little subdued, and she may be right.  I don’t feel particularly “down”, but neither do I feel particularly “up”.  Mood is something I really need to be aware of, because I don’t want to get back in the rut that I was in just a few weeks ago.  It may, or may not be to do with my device settings – that’s what is so difficult to determine.  It could just be that I’m having a few off days with my Parkinson’s Disease, and that I’ll be fine again in a day or two without the need for any intervention.  Conversely, it could be my device settings, and things won’t improve until I adjust them.  Nobody knows.  Not even the experts.  Everything is trial and error – suck it and see.

I’ve decided to try to make some progress with my video script today, but won’t be beating myself up if I don’t manage it.  I decided (following some remarks from my wife) that I’m putting myself under unnecessary pressure to meet a deadline that only exists in my head.

I manage to finish the script this evening, and my wife checks it over and approves.  Now I just have to shoot the video – Monday or Tuesday, while my wife’s at work and I have the house to myself.

I’m awake before my wife’s alarm goes off at 7.30am, but I don’t get out if bed until 8.30am.  I had a reasonable night’s sleep, aside from a little difficulty in actually going to sleep (in spite of some mild self-medication).  Left leg tremor is present, dystonia in my right foot is noticeably worse, as is dyskinesia in my right arm.  My voltage settings on Group “B” are much lower than the last time I used them, so I increase them to the maximum allowable (2.15v on the left and 2.2v on the right) to stop the tremor and dystonia – if dyskinesia goes through the roof, I’ll have to re-adjust later.

Downstairs, I grab my morning cuppa and Nutriblast (courtesy of my darling wife), give the dog a brisk walk around the village hall playing field and then get ready to go out – I am picking up some fabric sample books from Norwich for my wife’s business this morning.

PopMaster (in the car), a quick trip to Asda to stock up on some fabulous St Peter’s Cream Stout, and then I collect the fabric sample books and deliver them to my wife’s workshop in Hevingham.

Back home, I email the news agency that interviewed me yesterday offering to do a 2nd take – I’m convinced that they won’t be able to use very much of the footage they shot last night…  I seemed to be very slow responding to questions, and my speech was halting, which wasn’t helped by the shed-load of tremor that the stress of the situation brought on.  I’ve been researching the side effects of DBS for my video, and think that I do have some (mild) cognitive impairment – my thought processing speed and speech fluidity are not what they once were.  I hope this isn’t going to get worse.  On a more positive note, I had an email from the Cleveland Cannabis College about the script that I sent to them a week ago for approval – they were very happy with it, which is a relief!

I’m still slightly concerned about my motivation, because I haven’t done anything about progressing the script for my new video, although I don’t feel at all negative about it.  It’s something that I really want to do, and the content  (so far) seems pretty good, but I’m just not getting on with it!  Tremor is still there in my left leg, so is dystonia in my right foot – both seem slightly better since I changed my settings this morning.  Dyskinesia hasn’t increased substantially, which is a plus!  To be monitored!

I start the day with every intention of knuckling down and finishing my video script, but the day doesn’t start well.  My wife is still battling technology and trying to post online adverts for her soft furnishings business on various Facebook pages and internet newsgroups, so I abandon hope of making progress until she goes over to her workshop in Hevingham to take some product photographs for the website – but that’s okay, there’s still plenty of time.

I still have a fair amount of tremor on both sides of my body (but mainly on my left) and I still can’t decide what to do settings-wise – do I increase the voltages on my Group “A” settings (and risk dyskinesia increasing) or do I change over to Group “B” settings and see how they affect things?  I’d be more inclined to increase the voltage on Group “A” if it weren’t for the fact that dyskinesia is a little bit stronger today.  I take the dog for her morning walk, and note that my balance and walking are still fairly pants.  So, when I get back home I decide that I shall change my device settings to Group “B” if things haven’t improved by this afternoon.

I’ve received an email from another American news agency, wanting to use my “Parkinson’s Disease Tremor Control” video, and also wanting to chat to me on Skype.  I email them back and refer them to the news agency that is handling the licensing of my video.  They sound very keen, and I suspect I’ll be hearing more from them later on today.

I change my neurostimulator settings from Group “A” to Group “B”.  I get the usual tingle and “Wow” feeling as the different program is loaded, but no great feeling of being tremor free – in fact, if anything, it’s worse!  I check the voltages, and I’m getting 1.75v on the left, and 1.8v on the right, so much lower than the last time I used Group “B” (10th October, when I last went to the NHNN for a tune-up).  I’ll give them a few hours to settle in before making any adjustments.

I’m still not walking very well when I take the dog for a walk this afternoon – no improvement whatsoever.

The American agency that messaged me earlier have been back in contact – they are going to use my video, and also want to record a video interview on Skype.  When they call me late this evening, I get quite stressed, and tremor comes flooding back big time.  I hope I didn’t appear to be a complete gimp.  After the call, I self-medicate with a little cannabis – perhaps I should have done that during the interview!

I really did have a disturbed night last night – my Fitbit confirmed it!  I was wide awake at 1.30am (and so was my wife, so I think that I had a disturbed night because she wasn’t sleeping), and then restless time and time again through the small hours.  I woke to my wife’s alarm at 7.30am and managed to snooze until 8.30am, when I got up and got dressed.

My wife is having a bit of a lull in business at the moment, so is spending her time delivering leaflets, posting on Facebook, and updating her business webpage.  Delivering leaflets isn’t a problem, it’s the technology related activities that cause the stress – she really doesn’t get along with computers.  I learn a whole new vocabulary of swear words whilst sitting next to her on the sofa while she’s trying to update pictures on the website and post advertisements to a number of Facebook pages.  It’s a relief when she finally finishes and gets ready to go to Hevingham to babysit our granddaughter for the afternoon.

I was hoping to finish the script for my “DBS Side Effects” video today, but it’s just not going to happen.  There are a number of problems that my wife encountered during her “morning of stress” that I need to sort out for her, and those take priority!  To add to the fun, it’s chucking it down with rain again, and I need to keep an eye open for a break in the weather so that the dog can have her exercise.

I’m still getting tremor on my left side (mainly my leg), but it isn’t so bad that I need to alter my device settings – I’m trying not to adjust it too frequently – I think my symptoms vary on a daily basis in any case, and trying to chase them by changing my neurostimulator settings is muddying the water.  My other symptoms seem stable enough, and my dyskinesia may even have decreased a little bit, all on it’s own!

I do, eventually, get around to writing some more of my script, and I’m resigned to not completing it today – will aim for tomorrow evening instead.

I thought I had a very disturbed night’s sleep, but my Fitbit begs to differ.  I recall being awake a multitude of times, but it seems I was wrong – I actually had a brilliant, undisturbed night of sleep until just after 7.30am, when I tossed and turned until I finally got up at 8am.  I guess my recollection of a disturbed night is solely based upon that final 25 minutes or so…

I’m determined to write the script (or at least make a start on it) for my “DBS Side Effects” video.  I drink my tea and Nutriblast, and start going through my notes.  It’s a miserable, gloomy day here in Southrepps; pouring down with rain, which doesn’t look like it’s going to stop any time soon.  The dog keeps her head down – she never wants to go out when it’s raining.

I make sure that I don’t miss PopMaster today, and then a little while later the rain stops, the sun comes out and the dog looks at me expectantly.  Wellies on, the dog (not wearing wellies) and I trudge around the soggy playing field by the village hall.

When we get back indoors, and I’ve towelled the dog dry, I get on with the task of scripting my video.  My tremor is still being a bit of a nuisance, but my adjustments of yesterday seem to have had some sort of effect, because it has certainly improved.  I might be tempted to increase the left hand side voltage a little more later on…  Everything else seems pretty stable – no changes in dyskinesia or dystonia, balance or mood.  My motivation appears to be a little better today – whether that’s due to the change in voltage or not is anyone’s guess.

I have, at least, made a good start on the script.  I haven’t done as much as I had wanted to, but at least it’s a start…

I’m really annoyed with myself this morning.  I still have a lot of tremor in my left arm and leg, so I’m a little bit on the grumpy side to start with.  I’m checking my Facebook, when I notice a post from an old friend of mine about a gig that she went to last night at The Brook in Southampton.  It reminds me that my wife bought me some tickets for my birthday (in May) to go to see UB40 at the UEA this October.  I’m sure that I put a reminder on the calendar of my phone so that I’d be alerted to the concert a couple of days beforehand, so I’m not all that concerned.  I Google the gig to see when it is, and it was last Tuesday!  I can’t believe it!  I’ve never bought tickets for a gig before, and then forgotten to go!  I hate it that I missed the gig, but I hate it even more that the tickets simply went to waste – I hate waste!!  I check my phone calendar to see why I hadn’t been alerted to it, and I evidently forgot to put a reminder on there…

I take the dog out for her walk – perhaps the fresh air and exercise will make me snap out of it.  It doesn’t.  I’m still feeling out of sorts when I get back home.

I have a parcel collection (a box of British goodies for my brother, who lives in Nova Scotia) and a parcel delivery (a free box of food from Hello Fresh) this morning, and I manage not to miss either of them while I’m out walking the dog, so that’s a bonus!  I notice the time, though, and see that I have missed PopMaster this morning, and that annoys me as well – I hate it when my routine is disrupted!

I feel that my motivation is missing – I just sat on my backside today, and didn’t do or achieve anything.   The only time I did do anything, it was because the dog nagged me to take her out for her afternoon exercise.  I did manage to make dinner, though – although it was because I felt obliged to do so, having ordered the box of food from Hello Fresh.  My wife was very pleased to come home to a meal for a change, rather than having to prepare food the moment she gets through the door from work.  I had wanted to do some work on the script for my “DBS Side Effects” video, but have done absolutely nothing towards it – maybe tomorrow.  If I still feel this way tomorrow, I’m going to try changing over to Group “B” settings.

Slept well (must have been due to all the wine I drank last night!), and didn’t waken until almost 9am.  Immediately it’s evident that I have a lot more tremor this morning.  I’m also feeling incredibly tired, in spite of my good night’s sleep.  Dyskinesia in my right arm was a little more pronounced last night, while our guests were here.  This morning it’s also more of a problem than it has been lately.  Dystonia, balance, mood, all much as they have been.  Energy – I’m whacked!  Motivation – I just don’t feel like doing anything

My wife is off swimming with our granddaughter this morning, so I sit on the sofa, check my email, and do very little else (although I do manage to take the dog for a walk) for a couple of hours.  I’m struggling to contain my tremor, and it’s a battle that I’m losing.  Generally my tremor is fairly close to the surface, but manageable.  My left leg, though, is a different matter.  I can’t seem to keep it still for more than a handful of seconds, and it’s driving me mad.  Should I adjust my neurostimulator?  Should I self-medicate with some cannabis?  I’ve been avoiding any device adjustments because I have been worried about increasing my dyskinesia.  My dyskinesia is solely in my right arm at the moment, and this is related to the right hand side setting on my device.  Right sided tremor isn’t the problem right now, so I could (in theory) adjust the voltage on my left side up a notch to try to calm my left sided tremor without affecting the right sided dyskinesia.  My wife arrives back home, and asks me how I’m feeling.  In response, I raise the voltage on the left hand by two notches (0.1v) – so now I’m getting 1.95v on the left side, and 2.3v on the right.  I feel an immediate improvement.  It isn’t perfect, but it’s an improvement.  I resist the urge to increase the voltage a little more – I’ll give it 24 hours to settle.  If I’m still struggling tomorrow lunchtime, I could always try switching from Group “A” settings to Group “B” – perhaps using a completely different program will help.  Let’s just wait and see.  In the meantime I’m having a beer (medicinal!) and some cannabis (medicinal!).

I’m awake early again – 5.30am, and can’t get back to sleep again.  I lie awake, resting, until almost 8am.  My wife isn’t feeling too bright this morning, so I get up and leave her to sleep on for a while.

Everything, symptom-wise, is pretty much as it was yesterday.   Tremor is under control in the main, although it is fairly close to the surface.  Dystonia – manageable.  Balance – ditto.  Dyskinesia – ditto.  Energy and mood seem okay, and I’m still keeping an eye on my motivation.

We have dinner guests tonight, and I want to get started on preparing the food (so that my wife doesn’t end up doing everything), so I start off by reducing a packet of Digestive biscuits to crumbs, and make the biscuit base of the banoffee pie that we are having for dessert.  I struggle a little with spreading the biscuit mixture into the dish that I’m using, because any rhythmic movement presents me (and a lot of other Parkinson’s Disease sufferers) with difficulty.  I make a reasonable job of it (eventually) and bung it into the fridge to set.  Next on the agenda is the Thai green curry, which shouldn’t present too much of a problem (initially), but might be more of a problem when I need to cut the chicken and vegetables up later.  By the time my wife puts in an appearance, things are well under way – I even manage (with great concentration) to cut up the chicken and vegetables without cutting myself in the process – result!!  I finish assembling the banoffee, and then take the dog out for her afternoon runaround.

I’m still contemplating a change to my settings.  And I’m still hesitant.  I don’t want to upset the status quo.  I’m going to leave well alone (again) and just see what happens.  I self-medicate (mildly) with cannabis before our guests arrive – hopefully it’ll help me contain the tremor, and relax a little more.

I’m awake just after 6am – minor back pain, minor tremor (left leg), minor dyskinesia (right arm).  I can’t get back to sleep, but still manage to remain in bed for over 2 hours.  I get up and head downstairs for my cup of tea (I heard my wife putting the kettle on).

I’m a little concerned that my motivation may be affected by my latest settings, but perhaps I’m just tired and still recovering from our day in London on Monday.  Nevertheless, I need to keep an eye on it – I can always revert to my Group “B” settings, which are basically the same as prior to my tune-up (just a couple of very minor adjustments).  My wife hasn’t said anything yet, and she usually sees issues with my settings before I do.  My tremor is a little close to the surface at the moment – mostly well contained, but liable to break out without any warning.  Dystonia has calmed down again after yesterday, when it was a proper nuisance.  Balance is much the same (a bit pants), but generally I’m not too bad at the moment.

The reason I’m questioning my motivation is because I have a lot of work to do on my next video (Side Effects of Deep Brain Stimulation), but I keep putting it off.  I have collected loads of data from various online sources (Facebook pages and a Yahoo Groups Forum), and the next step is to take that data and incorporate it into a script for filming.  I keep finding other things to do.  Today I’m clearing some of the mess that I left in the conservatory following my woodwork attempts of several weeks ago – stacking the wood up into a neat pile, and putting the tools away.  Then I decide to light the woodburner (it’s distinctly chilly here today, and Summer is most definitely over) so I bring in some wood from outside, get the stove fan out of the loft, and stack the kindling  in place.

I vacuum up the debris that came into the house when I brought the wood in, and then light the fire.  By the time my wife comes in from work, the house is nice and cosy, and dinner is in the oven.

I still haven’t tweaked my settings.  The emerging tremor would indicate that some additional voltage is required, but I’m pretty sure that additional voltage will also mean additional dyskinesia, and since both tremor and dyskinesia are manageable at the moment, I’m inclined to just let things be.

I had another good night of uninterrupted sleep, and woke up just before 8am with a fair amount of lower back pain (but not as bad as yesterday!).  Some tremor, some dyskinesia, but overall I can’t complain.  I still haven’t fiddled around with my settings following my device re-programming on Monday, but I might be tempted to do so later on today.  I have more tremor on the right side than the left, for a change – although it is intermittent and not too severe.  Dystonia in my right foot is also more prevalent than it has been for several weeks, so perhaps an increase in voltage on the right side would be in order…

I drink my morning cuppa and Nutriblast, walk the dog, listen to PopMaster, and think about going to North Walsham to do some food shopping (we are having friends over to dinner on Saturday evening, and I need to get the ingredients for a green Thai curry and a banoffee pie).  I also need to go to Wayford Bridge and pay Bank Boats for repairing my boat.

The weather is obviously too miserable for Bank Boats to open today, and I leave without paying my bill for the second time this week.  Lidl in North Walsham is absolutely packed, and I whizz round with  my trolley as fast as I can – I hate crowded shops!   Next stop is Sainsbury’s for a couple of things that I couldn’t get in Lidl, and then I’m homeward bound.

I receive a message from the webmaster of the Polish Medical Marijuana website when I get home.  She has published an article on me about my  use of cannabis to calm my Parkinson’s Disease symptoms.  I have a quick look, and it looks good.  I’m not quite sure what it all says, but it looks good!  I post links to the article on my Instagram, Twitter and Facebook pages.

It’s approaching bedtime now, and I still haven’t adjusted my settings – I’m a little bit afraid of making my back pain worse, or increasing my dyskinesia.  I’ll see how I feel tomorrow…

I slept much better last night – self-medicating with cannabis yesterday evening made sure that I dropped off to sleep quickly when I went to bed.  I woke a couple of times, but went straight back to sleep.  When I woke around 8am, I had quite bad lower back pain, but at least I didn’t have the violent dyskinesia that has accompanied it in the past.  I had no tremor, and my dystonia was virtually unnoticeable.  I got up, got dressed, got myself moving and the back pain was soon a distant memory.

I posted a question to various Parkinson’s Disease and DBS pages on Facebook a few days ago, asking people who had undergone Deep Brain Stimulation surgery to document any unexpected side effects from having the procedure.  The idea is to gather all of this data, and make a video cataloguing  the various effects and side-effects as a resource for people who may be considering having DBS – I was unable to readily find this information before I had my operation and, although there is nothing that could have stopped me from having the surgery, it would have been nice to have been a little better informed.  Luckily, I haven’t had any really bad side effects, but if I had, then I think it would have been nice if I had been warned about them beforehand.  I find it amazing that people have had such appalling side-effects (even ones which they haven’t been warned about) and yet when I ask the question “If you had to make the decision again, would you still have DBS?” the response (generally) is a resounding “Yes!! It’s changed my life!”.  It just shows how poor their quality of life must have been prior to surgery.

I feel incredibly fortunate to have had this surgery, and to have greatly improved my tremor without sacrificing my vision, or my voice (too much), or my balance (too much), and to have also improved my bradykinesia, my mood and my motivation.

I didn’t have a great night’s sleep, in spite of being incredibly tired when we got home last night (at about 11.30pm).  It took me ages to get off to sleep, and then I was awake from about 5am, and quite uncomfortable.  Although I didn’t have the severe back pain that I have experienced from other device settings, I did have some discomfort.  I also have some dyskinesia in my right arm, and tremor in my left side (both arm and leg) this morning – it comes and goes…  I think I’m going to leave my settings be for at least the next 24 hours and see if letting them settle will alleviate the side effects.  I’m currently using Group “A” settings (which is a completely new program) and receiving 1.85v to my left side, and 2.3v to my right side.  Group “B” settings are basically the same as they were previously, apart from a change in frequency from 160Hz to 180Hz, and a wider window of adjustment so that I have more tweaking flexibility.

I have quite a lot of stuff to catch up on.  I email the Parkinson’s nurse with details of my videos on YouTube (because she hasn’t seen them yet).  I email a selfie over to the webmaster of the Polish Medical Marijuana website (because he needs a photo to publish with an article that he is writing about me).  I download the DBS programming video (that my wife filmed at the NHNN yesterday) onto my MacBook.  I enter the required passenger information into our flight reservations for our holiday.

Tremor still there.  Still a bloody nuisance.  Dyskinesia has calmed down.  Dystonia is under control.  Balance is a bit pants, but I’m coping.  Mood and motivation still seem good, and my energy levels are better than I expected following our long day yesterday.  My speech is much improved.  One of the speech specialists on the DBS team at the NHNN commented on how strong my voice was, following my reprogramming session.  She was amazed to find out that I’ve had Parkinson’s for over 20 years, and that I’m not taking any Parkinson’s medication.  It’s very encouraging when you get that kind of reaction from someone who sees Parkinson’s patients every day of the week!

I have a stab at writing a script for the video that Cleveland Cannabis College want me to film for them, and email it across for approval.  Then I self medicate with a little cannabis, and crack open a bottle of Hobgoblin!

A long day lies ahead.  My wife and I have a 9am appointment with the Parkinson’s nurse in North Walsham, and then we have to catch the train into London for a tune-up appointment at the NHNN this afternoon.  We arrive in plenty of time to see the Parkinson’s nurse, and she’s very interested to hear about my viral video and subsequent updates. A far cry from the response from Parkinson’s UK, whose immediate response to my posting a link to the video on their forum was to delete it.  They did, eventually, reinstate it, but only after I “outed”them on Twitter for censorship.

Next stop, North Walsham train station, and before you know it, we’re on our way to Liverpool Street station.  We travel first class, because it’s only as few quid extra, and you get free coffee and biscuits, and free WiFi.  Only problem today is that the WiFi isn’t working!  Just as well we have our phones with us and can use the phone network to access the internet!  We arrive in London on time, and roll up for my appointment at least 5 minutes early – a new record!  We have brought a little video camera with us today, in the hope that the DBS nurses will allow us to film me having my device programmed.  They make a few remarks about my Parkinson’s Disease Tremor Control video (in good humour) and allow us to film the programming session, which is great.  Not yet sure where I’m going to use the footage, but I’m sure it’ll come in useful.

My son and his girlfriend are travelling through London today, catching the Eurostar to Paris. We manage to meet up at St. Pancras station after we have finished at the NHNN and we have coffee and a chat before they go on their way.  While we are wandering sound killing time until the Blues Bar opens, I notice some tremor emerging, so we decide to return to the hospital for some adjustments.  This time we get a different programmer, and there’s some confusion over exactly what has been done at the previous session.  Luckily we managed to figure it out, and adjustments are made which send the tremor well below the surface.

Of to the Blues Bar, via Subway, and we are ready for a beer or two and some quality music. We are in for a shock.  I’ve seen some amazing musicians at the blues bar in the past, and I’ve seen some fairly average ones. I’ve never before felt like walking out, as I did today – it was almost painfully bad. In the end, we left early and went to McDonalds to get a couple of McFlurrys on the way back to Liverpool Street station. Very disappointed!

We are on the train back to Norwich now and all we want is to be at home and in bed.

Tremor has returned this morning, although not as bad as Friday.   I’m up reasonably early today, because I woke up early and couldn’t get back to sleep – tremor and dyskinesia saw to that.

I get myself downstairs, have my cuppa and Nutriblast, and take the dog for a walk.  When I get back from the walk, I change my settings over to Group “A”, and that feels much better (tremor-wise), although the dyskinesia hadn’t really improved.  My balance is still pants and so is my walking.  Dystonia isn’t a problem at the moment.  Mood and motivation is still good, and I seem to have more energy.

We see going to the NHNN tomorrow for a tune-up, so today we are going to Wayford Bridge to check on the boat, to Stalham to see my mother and brother, and to Hevingham to drop the dog off at my wife’s son’s house for the day.  The boat is looking good, and my mother is much better than last time I saw her (she has advanced Parkinson’s Disease) and her voice is strong enough to enable us to actually have a conversation.

We have dinner with my wife’s son and his girlfriend and then take our leave of them (and our dog) and get ourselves home and to bed.

What a difference 24 hours can make.  This morning I awake with only mild tremor in my left leg.  I’m on Group “B” settings, same as yesterday morning, but the difference in my tremor is quite remarkable.  I just wish I could figure out whether it’s because my Parkinson’s is having some time off, or my settings have reached a part of my brain that they couldn’t reach yesterday.

I want to finish subtitling my Interview video in Polish this morning, so need a reasonably steady hand to control my computer trackpad.  In fact, I’m so steady this morning that I use my wife’s mouse – something I haven’t been able to use successfully for a very long time!  After a little while I’m aware that I have some tremor in my legs (both of them), but it’s not troubling me enough that I am going to change my settings just yet.

Polish subtitles completed, I drop the Polish webmaster a quick email to ask him to check them, and then I see that I have a new email from the guy at Cleveland Cannabis College with the first few interview questions for me to script, in preparation for shooting their video.  I’ll have a think about them a little bit later – I need to finish my wife’s company’s books first, so that they can be emailed to our accountant on Monday.

While my wife gives the house a top to bottom clean, and reorganises the lounge, I sit amid the organised chaos and attempt to update the sales ledger spreadsheet.  Eventually, I enter the final figures, save the files and can relax a little bit.  Tremor is still remarkably under control, although dyskinesia has been a little on the strong side.   In fact, I had to check that my device was actually using Group “B”settings (and it was!), because dyskinesia is generally worse (and tremor generally better) when I’m using Group “A”

My wife has worked a small miracle in the lounge, which now looks much more cosy and homely than it did before she gave it her attention.  We have dinner, open a bottle of wine (red) and settle down for the evening.

I switch over to Group “A” settings almost as soon as I’m downstairs this morning.  Tremor is there in my left leg from the moment I wake, and I know I can’t deal with it today.  Today is the day when my wife and I must complete the company accounts for my wife’s business – I received the dreaded email from our accountant yesterday, asking me to send our records to him in order that he can perform the necessary annual audit.  Each year at this time, I promise myself that next year will be different – I will keep the books up to date on a weekly or monthly basis, and then there won’t be this mad panic at the last minute as we go through all of the bank statements, desperately trying to remember what the hell it was that we bought for £3.25 on the company debit card 18 months ago.  This year, I really mean it!

It doesn’t help matters that I am on my Group “A” settings – tremor control has been pretty good the last couple of days, but my wife thinks I have been a little aggressive and loud (and she’s right), and my patience and diplomacy is on the short side.  Luckily my voice is weak and strangulated today, so there’s no point in me losing my rag!  Eventually I send my wife out to walk the dog and de-stress, which she does, while I get on with putting some figures into the petty cash spreadsheet.  When she returns, we work together and manage to complete all of the purchase ledger entries.  It’s almost 6pm, and we agree to call it a day – sales ledger entries can wait until tomorrow!

My wife prepares our evening meal, while I check my email.  Polish subtitles for my Interview video have arrived, so I decide to make a start on them.   I talk quite a lot of words in the video and, consequently, there are a lot of Polish words, too.  It doesn’t help that my Polish friend has not exactly matched the Polish subtitles to the English subtitles – there is a fair amount of guesswork going on here, and it’ll be interesting to see if I have got it right when I ask him to check them.  I have subtitled almost half of the 8 minute video, and it’s getting on for 10pm, so I’m calling it a day, having (another) beer, and getting myself off to bed!

I slept well last night, and wake fairly tremor free for a change!

Downstairs, check email (Polish webmaster has emailed to say translations will be here tomorrow), cuppa, Nutriblast, walk the dog, PopMaster!

By the time PopMaster is over, tremor has returned and I switch my device over from Group “B” settings to Group “A”.  Much better tremor control, but my balance is definitely affected and my speech is even more indistinct.

I  am expecting a FaceTime call from Ohio this afternoon.  I have been emailed by someone who has seen my videos, and wants me to do a video interview for a Cannabis College that he is setting up to educate the general public and medical professionals in the benefits of medical cannabis.  The time for the call comes and goes, and then my wife arrives home and wants me to accompany her to North Walsham to do some food shopping.  I dash upstairs to put my shoes on, and while I’m upstairs the call comes through (and I miss it).  I text him and rearrange the call for when I get back from shopping.

We return from North Walsham, and I call Ohio on FaceTime while my wife chucks a ready meal in the oven and then takes the dog for a walk.  I have a good chat to the chap who is setting up the Cannabis College – it sounds very interesting, and just the sort of thing I’d like to be involved with.  I commit to producing an interview video for him (wearing a branded t-shirt) and also to taking part in live broadcasts to his classes of students – that should get the adrenaline going!

A late dinner and an early night are in order, and a change of settings back to Group “B”!

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.