2016-05-31 – A quiet day

Had another reasonable night up until 5am, when I awoke in much discomfort with my back.  Tossed and turned and dozed until I crawled out of my pit and switched my neurostimulator on just after 8.30am.  Co-codamol required!

Painkillers kick in fairly quickly, and my bad back doesn’t bother me for the rest of the day.

My left hand side is almost tremor free, my right side is very variable – one minute there’s nothing, the next moment my right arm is shaking like hell.  My dyskinesia is, similarly, noticeable one moment and absent the next.  Dystonia was pretty bad this morning, but calmed down very quickly once my device was turned on.  I feel that my left hand side is well controlled at the moment, and no apparent side effects – I will continue increasing the current on that side to see if this provokes any side effects; useful data for my next programming appointment in London.  Not sure where I am going next with regards to my right hand side, but no doubt I will come up with some ideas over the next few days.

It was persistently raining for most of this morning (and there had also been a thunderstorm in the early hours, which I managed to sleep through), so I am being really lazy today.  I only venture out to take the dog for a couple of walks and to go to the post office around the corner.  I’m also feeling quite tired, so that gives me a good excuse for being lazy.  Tremor and dyskinesia rule the roost this evening, so that gives me a good excuse for self-medication 🙂

I turn my neurostimulator up another 0.1v to 1.6v on the left side.  I am now 0.1v above the setting that I left the NHNN with following reprogramming on 12th May.  I try a little more self-medication with cannabis just before bed to see if that helps with getting off to sleep.  It doesszzzzzzzzzzzzz!


2016-05-30 – A cold day in Norfolk

Slept a little better last night – well, until about 5am.  Then drifted in and out of sleep until about 9am, when I crawled out of bed and put the kettle on.  Switched on the neurostimulator – I’m getting used to the odd sensation, the tingling that spreads throughout my body in a matter of 2 or 3 seconds and leaves me feeling “Wow!”.  I’m actually starting to enjoy this – I wonder if it’s addictive!

The rest of the country seems to be basking in sunshine and enjoying temperatures in excess of 20 degrees centigrade.  Here in Norfolk it’s about 15 degrees, overcast and blowing a strong chilly wind.  We were planning to stay another night on the boat and get up early tomorrow morning to go home, but decide to call it a day.  We pack up and load my wife’s car with all of our junk, and head back to Southrepps via the supermarket in North Walsham.  It’s so chilly that I light the woodburner for the first time in about 3 months!

Sitting  in the lounge, warm in front of our woodburner, watching videos of BBC Radio 1’s Big Weekend – I notice that my left leg has stopped shaking.  Just for a little while, but this is progress.  Left arm still has some tremor, and right arm tremor has definitely got significantly worse since I turned down the stimulation on the right hand side.  Dyskinesia still there but definitely less so.  Dystonia alive and kicking, but bearable.  My lower back is extremely painful, though, and I have to do some exercises to alleviate the pain.  It’s the first time in a long time that my primary discomfort has not been Parkinson’s Disease!

Another 0.1v added to my left side at bedtime, and then the power is switched off for the night.  Tremor is fairly quick to return when I switch off, although not as dramatic as some of the videos I have seen on YouTube would suggest.  I assume that at some stage my Parkinson’s will progress to a level whereby my tremor would keep me from getting to sleep if I turned my device off – perhaps it will be necessary to leave the neurostimulator switched on but at a reduced voltage in order to avoid the “thrashing about” side effect.  I guess that time will tell…

2016-05-29 – Taking stock

Dreadful night.  Awake and uncomfortable for most of the night.  I’ve always found the bed on the boat extremely comfortable, if a little short for someone over 6 feet tall, but it has now given me a fair amount of lower back pain.

I get up just after 7am.

On with the power.  The tremor in my left arm is well controlled, but my left leg isn’t.  I have moderate tremor in my right arm, but almost none in my right leg.  Dystonia hasn’t shown its face this morning, but dyskinesia is back almost immediately, although less severe than it has been.  All in all, not too bad!

Assessing things so far…  My neck is still quite stiff, but nowhere near as sore as it was when I was leaving the neurostimulator on all night.  My head is no longer so tender to the touch, although it does feel weird with all its new lumps and bumps, and although not completely numb all over, it does have a multitude of numb spots.  As far as my mental condition goes, I’m much more positive and motivated.  I also have an appetite again and there its a real danger that this, coupled with the fact that I’m not shaking so much, will result in me putting weight on.  Joseph told me, when I went back for re-programming this month, that most DBS patients put weight on, so that’s something I’ll have to watch.

I’m really pleased that my dyskinesia has calmed down, and the dystonia in my foot hasn’t been as bad as I had feared.  I have been keeping things under control with cannabis and alcohol when necessary, though.  My wife doesn’t like me self medicating, but in reality it’s no worse than taking Parkinson’s drugs, which most people with Parkinson’s have to take, even after having DBS surgery.  Parkinson’s medication either has no effect on me whatsoever, or it makes me feel so ill that I’d rather put up with my symptoms.  I’ve tried every drug that my neurologist has prescribed for me and the only one that has had a positive effect also made me feel extremely unwell, all of the others just gave me side effects without any benefits.

My brother was also on the river on his boat this weekend, with his son, grandchildren and our mum (who has advanced Parkinson’s Disease – over 20 years since diagnosis). They had headed off to Barton Turf to meet with friends for a barbecue.  Because we weren’t leaving the marina in our boat (I decided that if I wasn’t allowed to drive a car just yet, then I probably shouldn’t be in charge of about 2 and a half tons of boat – even if it is only going along at 4 miles per hour), we drove there to be sociable and have a drink and a chat. My mum was almost out of it when we arrived, and half an hour later was slumped over in her chair and had to be propped up with cushions.  She had taken her Parkinson’s medication an hour before, and this was the result.  I count myself very lucky not to be heading down the same road as her – at least not at the moment!

I still get really tired at the drop of a hat.  It’s as if my body says “Enough!! Down with the shutters!”, and I have choice but to comply.  My body issued the order to shut down, so we made our way back to our boat for the night.  Added another 0.1v to the left hand side (up to 1.4v now) and then switched myself off for the night.

2016-05-28 – Changing sides

From one extreme to another… After Thursday night I was expecting another one of the same, but I slept right through until almost 6am.

I turn my neurostimulator on to calm my tremor, which it does, but it also brings on my dyskinesia within a couple of minutes, even though I have the voltage turned down on the right hand side.  Dystonia is also there in my right foot, but bearable.  The tremor in my left leg is still quite strong, so I expect to be turning up the power another click on the left hand side later on today.  My impulsive behaviour did not re-emerge when I turned up the right hand side, but then I did not achieve the same voltage as previously because of the dyskinesia.  It will be interesting to see if increasing the left side provokes it.

My wife and I are heading off to our boat on the Norfolk Broads for a couple of days, which is a great place to just chill out.  I’m still not allowed to drive a car, and this bloody dyskinesia means that I’m really not fit to do so either.  It’s unlikely, therefore, that we will go out on the boat, other than mooching over to the water point to replenish our tank.  No worries – just being on the boat in the marina is relaxing.

Had a very relaxing afternoon and evening on the boat. Dyskinesia seemed to abate a little this afternoon. Increased the voltage on my left side by 0.1v (now 1.3v on the left and 1.6v on the right) just before going to bed, and then switched it off for the night.

2016-05-27 – What to do…

Well, I thought my sleep pattern was getting better and better, but last night I was awake every hour on the hour for no apparent reason.  I wasn’t uncomfortable, and I don’t recall my wife disturbing me  (although she says that she had a lousy night’s sleep, too).  I don’t feel too bad, though, and get out of bed just after 8am.   I decide to delay turning my neurostimulator on for a little while.  I want to be sure that the dyskinesia is absent prior to switching the power on, and not simply unnoticed first thing in the morning.  I do notice it ever so slightly, especially when getting up from the sofa.  Nothing compared to yesterday, and probably not even worthy of a mention.

I switch my device on at 9.15am, just before going out to North Walsham with my wife.  By the time we return, about an hour later, dyskinesia is back in my right arm with a vengeance.  So there is some dyskinesia present when the neurostimulator is switched off, and I assume that this is surgery induced, because it wasn’t present before.  Switching my device on does appear to increase the intensity of the dyskinesia – apparently surgery induce dyskinesia usually disappears of its own accord after about 6 months, so fingers crossed that this is the case!  Tremor is still there on my right hand side, as is dystonia in my right foot, but much improved compared to my pre-surgery days.  My balance is a lot better today, so that doesn’t appear to be related to the neurostimulator.

We have company this evening – a friend of my wife is coming over with a bottle of wine.  I don’t think we have told her about my illness, and so decide to lower the voltage on the right hand side on my device, hoping that my dyskinesia will become a little less violent and distracting.  I set it to 1.6v, which is the minimum for this setting group.  Dyskinesia doesn’t disappear, but does reduce significantly.  Dystonia and tremor creep back a little.  I decide to leave the right hand side setting at the minimum while I adjust the left hand side over the next few days.  At bedtime I turn up the left hand side to 1.2v, and then turn the neurostimulator off for the night.

2016-05-26 – It’s a waiting game

Only awake briefly at 4.15am and then sleep until just before 6am.  I’m feeling good this morning and am dressed and downstairs before I’ve turned my device on.  Instant tremor control on the right, almost instant dyskinesia, too.  Dystonia comes trailing along behind a couple of hours later.

Our guests depart around lunchtime following a hearty breakfast and much viewing of Joe Bonamassa videos on YouTube.  Dyskinesia is getting almost violent at times.  I decide to self medicate with cannabis to see if it will it settle down at all.

It doesn’t, but it does relax me sufficiently that it is bothering me less.

Time to walk the dog, and I have the same feeling of being slightly unsteady that I had yesterday.  I think that my walking may be a little affected, but that’s a difficult one for me to determine.  Is my poor balance causing a problem with my walking, or is a walking problem causing me to lose balance?   I’ll have to get my wife to watch me and see what she thinks.

Dyskinesia remains the main feature this evening.  I think that my symptoms have stabilised after my last voltage increase, but I am going to wait until tomorrow evening before making any more changes.

2016-05-25 – Thrashing

Another good night. Only woke up the once, at 4.30am.  No thrashing around and moaning since turning my device off at bedtime.  I power myself up and get the tremor under control, at least on the right hand side.  By the time I am downstairs I notice the dyskinesia has returned and is stronger than yesterday.  Dystonia is also there, but definitely bearable.

Its raining this this morning, so my friends and I are off to Alby Crafts and Wroxham Barns to pass the day.  Apart from the dyskinesia I’m fine, but the almost constant twitching is driving me mad.  I won’t increase the voltage on my neurostimulator today.  If I let things settle for a couple of days then I can assess the situation properly and decide what I’m going to do next.  We go out and my dyskinesia is definitely getting worse.  By the time we get back home I’m having to be quite careful picking up my mug of tea in case a random twitch sends the contents all over the place.  I also notice that my balance is worse today.  I’m not falling or even stumbling, but I definitely feel more unsteady.

My friends treat my wife and I to dinner and beers in the Vernon Arms tonight.   The alcohol calms the tremor quite markedly, but the dyskinesia does not appear to decrease at all.

To bed…  Neurostimulator off.  Tremor on. Dyskinesia off.  I’m really wide awake again and don’t think I’m going to fall asleep, but 10 minutes later I have.

2016-05-24 – Another day another tweak

1am, 2am, 3am, 4.30am, 6am, 8am, awake and shaking.  On with the power, out of bed.

Downstairs and I start to get a cooked breakfast together, but my wife intervenes and makes me sit down.  We are going over to see my mum and brother today and my wife doesn’t want me to tire myself out.  I sit and assess my symptoms.  Pretty strong tremor on my left side, mostly in the leg.  Moderate tremor on my right hand side, mostly in my arm.  Some dyskinesia.  Some dystonia.  My benchmark is my signature.  If I sign my name and it actually looks like my signature should, then I’m pretty happy.  My signature looks good, all things considered.

My wife heads off to work.  My friends and I head off to Stalham to visit my mum, who also has Parkinson’s, and my brother, who doesn’t.   My mum is concerned that my tremor has come back, but I explain that I’m experimenting with the settings on my neurostimulator and she accepts that.  We were hoping to go for a little cruise on the Broads, but it’s really windy and quite chilly so we decide to give this a miss and take mum for a drink in the Sutton Staithe pub instead.  A pint and a packet of crisps go down a treat, and the alcohol relaxes me and improves my tremor.

We drop my mum off, and head back to Southrepps, where I have my arm twisted (honestly!) and we pop into the Vernon Arms for another pint (well 2, actually) and to book a table for dinner tomorrow night.   My tremor calms down a little more, and my friends notice and comment.  Alcohol may not be the solution, but it’s a pretty good tool in the meantime.  Dyskinesia is getting a little stronger, though – not enough to be really troublesome, just enough to remind me it’s not going away just yet.

Bedtime, and I crank it up by another 0.1v (to 1.9v) on the right, and then turn it off for the night.

2016-05-23 – The cavalry is here!

I woke up many times in the night, but this time I think it was probably due to my wife hacking and coughing.  She seems to have picked up a cold from somewhere (probably from our granddaughter).  Anyhow, I had a night free from tossing and turning and feel rested and ready to face another day.  I have a fairly strong tremor this morning, principally in my arms and legs, and turn my device on before getting out of bed. Left arm and leg still have a fairly  good shake going on, but right leg is fairly static and right arm is bearable.  The dyskinesia in my right arm is barely noticeable this morning, and dystonia in my right foot is negligible.  I’m looking forward to turning my neurostimulator up another notch later on today.

Wendy, one of the Parkinson’s nurses in Cromer, is coming to see us this morning, and she calls just after 9am to say she’s on her way.

Wendy arrives and is greeted by Willow, our black labrador.  She is evidently a dog lover (having 3 of her own) so that’s a good start!  Willow approves.  We sit and chat over coffee, and my wife gets a lot of comfort and reassurance from Wendy, especially regarding the changes in my persona (“Ian’s still Ian, it’s Mr Parkinson you’re seeing.”), and by the time she departs is feeling a lot more positive.

We have some old friends of mine coming to stay for 3 days, so I sit and watch while my wife attempts her impression of a whirling dervish, vacuuming and mopping floors, cleaning the kitchen sink, straightening the garden furniture, before disappearing off to work for the afternoon.

I feel dystonia creeping back in my right foot, so it could be time for a little medication of the cannabis variety.

I turn my device up on the right side by 0.1v and feel no difference.  It’s only when I’m getting into bed that I notice that I only have 1.7v on the right, so I hadn’t turned it up after all!  What a prat!  I turn it up to 1.8v and then switch it off for the night.

Immediately my tremor is back throughout my body, and I’m now wide awake.  I’m lying there awake and shaking wondering if I’m ever going to drop off to sleep, wondering if this is a new sleep pattern disruption…  and I fall asleep.

2016-05-22 – Trying to work it out..

I only woke once during the night; at 4.30am when my wife told me I had been thrashing around a little.  Decided to leave my device switched on, and see how it went.  Slept again until around 6am and was aware of being on the verge of thrashing around.  My tremor was quite pronounced throughout my body, the dystonia in my right foot was becoming more pronounced and I didn’t feel as comfortable and rested as the two nights when I had switched my device off overnight.  So, we feel that the neurostimulator is causing the thrashing around at night – like some kind of full body dyskinesia.  Will turn it off every night at bedtime, and see if this pattern prevails.

Sitting here writing this blog, I find my tremor and dystonia are verging on the unmanageable, but I don’t want to change any settings until 24 hours has passed since the last changes.  The dyskinesia in my right arm is still there, but very much reduced compared to yesterday.  I notice that my voice is a little muffled sounding, and my wife notices and says my voice is quiet today.  I decide to self medicate with cannabis, and this kicks the dystonia into touch, and helps a little with the tremor.

We are given a couple of fresh boiled crabs, and I attempt to dress them.  My tremor is too severe to allow me to do the fiddly bits, so I’m afraid my wife will have to step in.

I have turned the right electrode up by 0.1v and left the left side alone, so now I have 1.1v on the left and 1.7v on the right.  There seems to be an immediate improvement in the tremor in my right arm.  Will let it settle for another 24 hours before doing anything else.

It’s beer-o-clock….

I turn the neurostimulator off at bedtime, and hope for a good night’s sleep.

2016-05-21 – Careful consideration?

Didn’t wake until 4.30am, and then just before 6am, so definitely sleeping better without DBS being switched on.  No thrashing around either, so I conclude that that was due to dyskinesia caused by the neurostimulator.  I have a moderate tremor throughout my body, and dystonia is returning to my right foot, but it isn’t too bad – it’s been much worse!  I stay in bed snoozing intermittently until 9am.

Downstairs.  I load the dishwasher, take the rubbish out to the bin, and have a sit down before tackling the pans and making a brew.  I was going to try to determine which of my settings was giving me the best relief whilst also causing the least side effects.  I sit for a few minutes trying to review what I have written in this blog, and find that the intensity of tremor in my right arm prevents me from using the trackpad or keyboard.  Careful consideration?  Sod that!  Just switch the bloody thing on!  So I’m still on the same settings as last night (Group A, 1.6v left, 2.1v right).  Tremor is instantly moderated, but still quite evident on both sides.  When I start to wash the pans a few minutes later, I feel the dyskinesia returning to my right arm.  At least is is only in my right arm!  The dystonia in my right foot is still there to a degree, but definitely manageable.

My wife and I go out food shopping – we have visitors for 3 days next week, so have to get supplies in.  We are only out for about an hour and a half, but it tires me out.

My wife and I decide to analyse my neurostimulator settings and resulting effects and side effects.  After about an hour of discussion and copious notes, we decide to go back to the most recent settings (from my re-programming on 12th May), and then reduce the voltage on both sides to the permitted minimum.  When Joseph did my programming, he allowed me to increase or decrease the voltages on each side by 0.4v in 0.1v steps.  Now my device is giving me 1.1v on the left side and 1.6v on the right.  I have fairly detailed information on my device settings when I was discharged from hospital, but absolutely no information at all on what they were changed to on 12th May.  I really need to know more.

I notice that my tremor is a little more, my dystonia also, but my dyskinesia seems slightly less.  We have agreed to leave the settings as they are for 24 hours, so I am medicating mildly with alcohol and cannabis.  I decide to leave my device switched on tonight to see if the “thrashing around” occurs again.

2016-05-20 – Shaking but not stirred

Another good night’s sleep. I’m awake just after 3am, and around 4.30am, and just before 6am, but feel rested, not in any major discomfort and not thrashing about and moaning, so that is definitely progress.  I lay in bed until just after 9am, dozing from time to time and trying not to disturb my wife who, I know, has not had such a good night.

Downstairs, feed the dog, make a brew, sit down and check email.

I have a moderate tremor going on all over my body, but still haven’t switched my device back on.  I have a message to respond to, and try to do so, but after a few minutes of retyping every word 5 times I admit defeat and switch my neurostimulator on.  Don’t ask me why I regard it as defeat, because I’m not really sure.  I suppose I like to think that I can do without any assistance.  I’m stubborn like that.

A rush of electricity, the amazing relief, and my message completed and sent within a couple of minutes.

My tremor is moderated but still significant in both arms and legs.  I may try increasing the voltage later on, but for the moment I’ll try a little cannabis.

My wife and I are babysitting our 8 month old granddaughter this afternoon.  I notice some side effects re-emerging, catching myself on the verge of being over loud.  I turn my left side down as far as it will go – 1.6v.  Feel more relaxed now.  Dyskinesia in my right arm is on the increase, so I turn my right side right down as well – 2.1v.

Back home now and the settings have been changed for 2 and 3 hours respectively.  Dyskinesia still on the increase, threatening to make me knock over my beer when I go to pick up my glass – that just won’t do! 🙂  I decide to turn the neurostimulator off for the night.

Tremor returns over the next hour or two.  I’ll have to have a careful think  about which settings to use tomorrow.

Another day with no painkillers!

2016-05-19 – Going back in time

I slept well.  Although I woke at 3am, 4.30am and 6.15am I wasn’t in as much discomfort as previously and certainly don’t recall any thrashing about.  My wife confirmed that I hadn’t been shouting or thrashing around in my sleep, so that seems to be a side effect of DBS – perhaps…

My neck is still stiff, but definitely nowhere near as painful as yesterday – another side effect?

The dyskinesia in my right arm has all but disappeared, so I’m now fairly convinced that it is related to the stimulation rather than the surgery itself.

My wife can hardly believe that I don’t have my DBS switched off.  I do have some tremor in my arms and legs, but not anything like I had prior to surgery.  Maybe it is taking more time to return once the neurostimulator has been turned off.  After all, the side effects do not appear instantly when I turn it back on, taking a day or two to re-emerge.  By the time she leaves the house to go to work, and I am ready to take the dog for a walk, significant tremor has returned to my arms, so I decide to switch myself back on.  I think that the latest settings are not as good overall as the previous settings, so elect to return to the previous settings.  I change my device with the remote control, and then switch it on.  I feel the tingle of electricity throughout my body, followed by an enormous sense of relief.  It is as if I have been consciously suppressing my symptoms through a huge concentration of effort, and suddenly the neurostimulator takes over and that concentration of effort is no longer required.

I feel the need to understand my neurostimulator settings a little more.  Having gone back to my previous settings, I am receiving 2.0v on the left side of my body (1.8v previously) and 2.5v on the right side (2.3v previously).  What I do not know is which contact (or contacts) are being stimulated, or if all other settings are the same.  I will email Joseph to find out.  I feel that I will be able to have more input to my next re-programming if I have a better understanding of exactly what is happening when I switch between settings or adjust the stimulation up or down.

I have slightly more tremor (particularly on my left side) with the old (Group A on my controller) settings compared to the more recent (Group B) settings, but my speech seems clearer to me.  I will try a little cannabis to see if that will assist.

….and… it does!

The Parkinson’s nurse calls me this afternoon, so I explain the situation and she is coming to see me and my wife next monday morning.

My wife seems a little calmer today.  I think she has been under a extraordinary amount of stress, and I haven’t really been helping much in that respect.  I made her take the afternoon off, take the dog for a nice walk and just chill.

Dyskinesia seems to be creeping back in my right arm since I switched my neurostimulator back on, and I feel I’m being a bit loud from time to time.  I’ll give it a good 24 hours before making any further adjustments though.

Okay, I lied.  My wife feels that I have been “just not yourself” today, so I turned my stimulation down on the left hand side from 2.0v to 1.7v to see if it would curb side effects that were reappearing.  I also turned the device off at bedtime to see if it would prevent the thrashing around in my sleep like it seemed to do last night.

No painkillers today!!!!

2016-05-18 – Side effects

I woke just after 5.30am in extreme discomfort with my head and neck.  I got out out of bed and dressed almost immediately, not wanting to disturb my wife.

When she awoke and came downstairs, she told me I had been thrashing about in the night and making a lot of noise.  Generally, she felt, I was not entirely in character.  She was extremely agitated and tearful, especially since she felt she hadn’t been told about the possibility of this side effect.  I couldn’t remember being told about it either, but I’m sure we would have been.  There is so much information to take on board, and if it had just been mentioned in passing there is every likelihood that we would not have absorbed it.  I’m going to turn my stimulator off tonight to see if it makes any difference to my sleeping pattern and/or the thrashing about.

My neck is extremely sore and stiff today, and I started (and ended) the day with paracetamol.  I notice that the dyskinesia is getting worse, but only appears to be affecting my right arm.  My balance is still not great, but I still haven’t actually had a fall.  I’ve been able to catch myself before falling, so far!

Decided to call the Parkinson’s nurse to see if she could offer some advice or counselling to my wife.  Still waiting for them to call me back, but I don’t hold out a lot of hope since I really need someone who has some experience with DBS and its side effects.

I decide to self medicate mildly this evening (cannabis and alcohol) and achieve a good state of relaxation.  DBS turned off around 8.30pm.  I feel the difference throughout my body as the neurostimulator is switched off, but my tremor doesn’t return immediately as it has done previously when Joseph has switched it off during re-programming.  I can only assume that the cannabis and alcohol have things nicely under control.  My wife has not noticed any difference yet (I haven’t told her I have switched off yet).  When I go upstairs to have a bath, I notice that the dyskinesia in my right arm is significantly reduced – I really hadn’t expected that.

I notice tremor creeping back (left leg, mainly) when I get into bed, but it doesn’t prevent me from falling asleep.

2016-05-17 – Stress

Another night of fractured sleep.  I wake at 1.30am, 2.30am, 3.30am and 5.45am in great discomfort from my stiff neck, and get up just after 7am.  Paracetamol helps.

My wife is feeling the stress of it all at the moment.  I’m obviously disturbing her sleep when I awake moaning and groaning.   Then she has got to go to work, feeling like she needs another 2 or 3 hours sleep.  She worked herself ragged at the weekend organising my birthday party, cleaning the house, preparing the food.  And then there’s me to worry about, especially when my DBS causes changes to my behaviour.  She’s really stressed at the thought of me being changed, and I don’t seem to be able to reassure her in any way.  There are plenty of documented cases online of people becoming impulsive due to side effects from dopamine agonists used to treat Parkinson’s Disease, and she is worried that the impulsive behaviour that I have displayed on a couple of occasions is going to become the norm as my Parkinson’s progresses and my device voltage has to be increased to suppress my symptoms.  I think I will have to find some help for her, because she doesn’t feel that she is handling it very well, which in turn is giving me a lot of stress, and stress affects me badly.

My tremor is pretty well controlled at the moment, so I’ll leave the device settings alone and see how things go.  I’ve been peeing for Britain this morning (four times in the last hour) and I wonder if that is possibly linked to the higher level of stimulation.  I’m not drinking any more than usual.  I’ll monitor this.  My dyskinesia seems to be getting worse, but it is still manageable.  I have found quite a lot of information online about surgery induced dyskinesia, and it appears to manifest itself within the first month following surgery (yep, that fits) and usually disappears of its own accord within 6 months.  I did wonder if the DBS stimulation was causing it, but haven’t been able to find any evidence of this online (as yet).  I did mention it to Joseph when he re-programmed me last week, but he didn’t make any comment.

The back of my head, where the screws from the frame were tightened, is still scabby and feels bruised and tender.  The ones on my forehead were only mildly uncomfortable, and had healed completely within a week.  More flesh on the forehead than the back of my head, I suppose.

2016-05-16 – Another tweak

Woke at 2.30am and again at 3.30am, and then it was 5.45am and I’m really awake and in quite a lot of discomfort with my neck.  Not really what I would call being in pain, but definitely too uncomfortable to go back to sleep.  I lie there, though, until just before 7am and then get up and get dressed.

My wife has to be elsewhere this morning, so she is out of the door by 7.15am and I am left to my own devices.

Coffee, paracetamol, tea, dog walk.  In that order.

Self medicate mildly (cannabis) and wait to see how the tremor settles.

Tremor still there 2 hours later, so I decide to increase the voltage again to 1.8v on my left side and 2.3v on my right side.  Half an hour later, the tremor is gone.  I feel fairly calm, so I think I’ll leave it at that setting until tomorrow and see how I am then, unless I start behaving oddly this evening.

2016-05-15 – Another year older

Today is my 55th birthday.  My wife has been working like a demon, preparing food for a party in the back garden for 20 guests, cleaning and tidying the house, preventing me from getting off my backside and helping (because she wants me to rest).

I still have some tremor today, so decide to turn the voltage up another notch on both sides of my body, so now have 1.8v on the left and 2.3v on the right.  I feel a minuscule surge and my tremor seems to be reduced.  I’m very conscious of any changes in my behaviour, so check with my wife that I’m okay.  So far, so good.

Our guests start to arrive from 3pm onwards.  Everything is alright, initially, but then I notice that I’m being a bit loud and saying things I wouldn’t normally say.  Nothing bad, but definitely out of character.  I turn my neurostimulator back down, and almost instantly I’m okay again.

A little self-medication (alcohol) keeps the tremor under control and I can enjoy myself and almost forget about it.

Everyone has gone by 9.30pm, and my wife and I sit and have a drink together before going to bed.  I’m completely knackered, struggling to keep my eyes open, voice is getting quite slurred (not due to alcohol, I assure you).

2016-05-14 – A pain in the neck!

Slept okay last night. I was in the land of nod before half past midnight, and didn’t wake until just before 6am.  Then I tossed and turned until almost 9am!  My neck is still feeling very stiff and sore, and seems to be slightly worse than it was yesterday.  Maybe because I didn’t take any painkillers yesterday or perhaps it is just that it is now more painful in comparison with my head.  It’s no longer quite so painful to lie on the left side of my head where the wires run under my scalp to the back of my head.  I think that the swelling has pretty much gone now, the pain is much less now when I run my hand (lightly) over that side of my head, and I get the surreal sensation of my scalp being numb.  Up until Wednesday night I had been taking a couple of co-codamol before bed so that I didn’t wake up as soon as I turned in my sleep and applied any pressure to the left side of my head.  I was also waking in a lot of discomfort (my wife says I was shouting out in my sleep) and taking more co-codamol first thing every morning.  I was uncomfortable when I woke this morning, but only about a 4 on a scale of 10, so I didn’t take painkillers.  It’s now just after 4pm and I’m thinking of taking some to alleviate the neck pain.  I’ll take the dog for a walk and take some when I get back, if it’s still giving me gyp!

My tremor was noticeable when I woke this morning, mainly in my left leg but also my right arm, so I cranked the voltage up by another 0.1v on each side (now 1.7v on the left and 2.2v on the right). I’m still shaking slightly this afternoon, but I’ll let it settle for a while before adjusting any more.

I still have a tendency to flail my right arm around somewhat when getting up from the sofa or climbing the stairs. I still think it is possibly mild surgery induced dyskinesia, although it could be due to a slight loss of sense of balance and maybe I’m using that arm to counteract that.  If so, its a subconscious thing because I’m not aware of the need to do so.  I don’t think that the neurostimulator has impacted this but I’ll keep an open mind…

Dog walk over and neck still bothering me, so co-codamol here we come!  Plink, plink, fizzzzzzzzzz!


2016-05-01 – Celebrating once more

I woke without a hangover, which is pretty remarkable in itself.  I am very uncomfortable, though.  My neck is still extremely stiff and sore from the surgery, and I’m aware of thrashing around and trying to get comfortable as I make the journey into consciousness.  Perhaps I have too many pillows?  I’ll try just the one tonight rather than the two that I usually have – see if that makes a difference…

My son, his girlfriend and I take the dog for a walk, and then head off to North Walsham with my wife to get some shopping – my wife’s sons have ensured that we have some basic supplies in the fridge when we got home, but we really don’t have much to make a meal with.  We get sausages, bacon, eggs, baked beans for breakfast tomorrow, and some chicken, salmon, vegetables for a couple of evening meals.  I’m quite tired by the time we get home, so spend a fair amount of time lounging around on the sofa and doing very little else.

My wife wants to treat everyone (her two sons and their girlfriends, her ex-husband and his girlfriend, my son and his girlfriend and me) to dinner at The New Forge restaurant in nearby Aylsham tonight, so we book a table for 10, have baths, get changed and head off to Aylsham to eat.  Much food is eaten.  Much beer is consumed.  I’m still fairly “fired up” and find it hard to sit still for very long, which worries my wife – she’s trying to make sure I don’t do anything stupid and hurt myself, but it’s difficult for her to keep track of me, especially when I’m arranging with the waitress to make sure that I pay the bill, not my wife!  We get home late, and I head straight for bed.