Author: Ian

Another good night of sleep.  Another lie-in.  10am again 🙂  I’d have got up a couple  of hours earlier – I was lying wide awake with a fairly vigorous tremor going on throughout my body, and dystonia trying to turn my right foot into a claw – but I switched my neurostimulator on, and then twitched (my dyskinesia returns in a flash) and dozed for a while.  My tremor is definitely getting more difficult to ignore when I turn my device off, and it is obvious that my Parkinson’s Disease is progressing well behind the scenes.  It’s only a matter of time before I will need to leave my device on at night so that I am able to get to sleep.  Having said that, I didn’t self-medicate with cannabis last night, and that may be why I struggled to get to sleep.  I had had a couple of beers, but alcohol is not so effective.

I don’t appear to have done any more damage to my right elbow when I fell again in the bath last night.  It’s still sore, mind you, from when I fell a couple of nights previously.

My wife takes the dog for her first walk of the day, and then she’s keen to continue sorting the bedroom out.  I’m not keen to do much at all.  I mean, I’d like to do loads of stuff…  I just can’t at the moment.  I’m really hoping that a little re-programming on Tuesday will sort things out a bit on several fronts!  I eventually mix up some mortar for making good around the slate hearth in the fireplace in our bedroom, and then I made a (reasonably) good job of making good.

I also did a little weeding in the back garden while my wife was working away in our bedroom, cleaning and dusting and hanging the newly made curtains  (which she made!).  It’s really starting to look like a home now, rather than just the house where we live.

We go shopping in North Walsham for some picture frames (we need half a dozen of various sizes – we buy one) and a battery for a clock that we found in one of the boxes we brought down from the loft.  I’m feeling very stiff and inflexible at the moment, and my walking isn’t particularly good either – getting in and out of my wife’s car is a bit of a struggle.

When we get home, the dog wants her afternoon walk, but it’s just started to rain.  I wait for it to abate a little, and then take her for a quick stroll in the drizzle before we have dinner.

We sit, this evening, with boxes of old photos; trying to sort them all out, but really just reminiscing and laughing at how we (and our families) used to look.  Nothing gets sorted, but we now know we need a load of photo albums!

We both have a better night, thank goodness. I only wake once (3.30am) to stumble to the loo, trying not to open my eyes wide.  Success!  I’m back in bed and back to sleep before you know it.   We even have a bit of a lie in and don’t get up until almost 10am.

My wife wants to get some work done in the master bedroom today. The little cast iron fireplace needs a piece of slate for its hearth and we also want to get some pictures hung on the walls. I’m sitting downstairs trying to get myself motivated (yes, motivation and energy are still severely lacking) when I hear the sound of my wife with a hammer and cold chisel preparing the hearth for the piece of slate.  I drag myself upstairs, prepared to assault the job with my SDS drill, but my wife is making such a tidy job of it (and without making half the mess that I would have) that I leave her to it, and toddle off back downstairs to mix up some adhesive instead.

I lay the piece of slate, and we are both pleased with the way it looks, so that’s good!  Now we have a huge pile of pictures to sort through and decide (a) Do we want to keep them?  (b) which room they are going in? and  (c) which wall are they going on?  We end up hanging 4 pictures in our bedroom, a picture and a mirror on the landing, and sorting out a clock and a picture for the spare bedroom.

We are going out to a party tonight, party animals that we are.  Not.  I’m not feeling up to it, so we won’t stay long.  We end up staying just over an hour and a half, enjoy the excellent buffet, and listen to a pretty good covers band.  I’d have stayed longer and listened to the live music, but I’m tired so we make our excuses and leave.

We get home and opt for an early bath.  I manage to do my trick of a couple of nights ago, fall backwards in the bath and bash my right elbow on the edge of the bath again.  My wife must be listening out for me because she is up the stairs and into the bathroom before I’ve finished cursing.  I’m okay, no problem.  It’s tomorrow that I’ll find out if I’ve done any more damage to myself.

We all awake to an uncertain new world this morning, although I don’t realise it until I’m switched on, dressed and downstairs with the first cup of tea of the day.  So we have voted to leave the EU, and you would think that the world is about to end.  I really can’t get too stressed about it right now – it’ll all settle down again soon…  We are still in the EU until such time as we actually part company with it, and that’s 2 or 3 years away yet!

I have no energy, and no inclination to do anything today – and that’s nothing to do with the state of the world, it’s just the state of me.  Thankfully my dyskinesia isn’t quite as bad as it was yesterday.  Balance, tremor, dystonia, energy and motivation are all pretty much the same.  I haven’t spilt anything today, and I can write and sign my name, so I’m really not that bad.

I manage to get out of the house for 10 minutes, courtesy of our dog.  If it wasn’t for her, I’d just sit here on the sofa the whole day long.  I do manage to do a couple of minor things – I got the washing in from the line, and I emptied the dishwasher.  I intended to iron the washing and then pop to the allotment and do a little more weeding (because it’s a beautiful warm and sunny day), but don’t manage to do either of those things.  I started looking online for an adjustable spanner to fit the Calor gas bottle regulators (there’s no mains gas here), but didn’t complete that task either.  It’s pathetic, isn’t it?  I have so many things that need doing, and so many things that I want to do, but I can’t get off my fat backside to do them…

Before I know it, my wife is home from work.  We take the dog for her afternoon walk together, which is nice.  We are going out to The Vernon Arms for dinner tonight (with the £30 voucher that we won in the Open Studios draw), so we are both looking forward to that.

Dinner is good – well up to the usual standard!   We finish off with a really good mocha cheesecake, and then stagger up the road to let the dog out and get to bed.

I woke in the early hours (3am-ish?) with terrible cramp in my right foot.  As soon as I’m awake, the foot is also clenched tight with dystonia.  I move my leg and foot around trying to alleviate the pain.  Just as I’m about to reach for my remote control and switch my neurostimulator on, the cramping subsides.  I concentrate on relaxing the muscles in my foot and manage to drop off to sleep again.  Awake again at just before 7am, I snooze until 8am and then get up, dress and go downstairs to feed the dog and put the kettle on.

I’m keen to maintain the momentum and follow up on yesterday’s successes, so I’m preparing another list of tasks that I think I can achieve.

1. Research button blanks for my wife.  She has just bought her own button press for covering buttons with fabric, but doesn’t have any of the blanks required.
2. Sharpen the Dutch hoe.  I need to get the bench grinder out from under the double bed in the spare bedroom.  I managed to locate it yesterday, but didn’t manage to get it out – there’s rather a lot of other stuff in the way!
3. Do a little weeding down at the allotment, provided the weather holds out.
4. Continue to search for the camera cable or the card reader so that I can transfer photos from my digital camera to my laptop.

I take the dog for her morning walk, and visit the allotment to see what needs to be done.  Weeds are choking what little we have managed to plant this year, and it looks like a mammoth task – so I resolve to weed between the rows of potatoes, and just see how it goes.  I see that some of the strawberry plants have borne fruit that the birds and slugs haven’t eaten just yet, so I’ll bring a container down with me and pick them to have this evening with some cream or yoghurt.

I return home, let the dog into the house, and on an impulse get down on my hands and knees in our front “garden” (a small area of shingle through which grow a few wild poppies and a lot of weeds) and spend a few minutes removing the worst of the weeds.

 

 

 

 

 

 

 

As I finish up, it starts to rain, so maybe that’s the end of my gardening for today…  I make myself a gourmet lunch (peanut butter on toast), load the dishwasher and switch it on, and then sit down with my iPad to search for button blanks.

I get bored with the search very quickly and, since it has now stopped raining, decide to get the bench grinder out and sharpen the hoe.  Job done!  Bench grinder returned to its place under the bed, and I decide to go and do some weeding at the allotment.

I intend to weed for an hour, but time passes in a blur and before I know it I’ve been there for over an hour and three quarters.  I think I might have overdone it – had a lot of trouble getting to my feet!

The dog wants her walk when I get back, and I take pity on her even though I’m feeling near to collapse.  A 15 minute walk turns into 45 minutes because we bump into people (other dogwalkers) that we haven’t seen for some time.  When we get back home I feed the dog and run a nice hot bath.  My wife prepares us a meal, and then we slump in front of the telly for the rest of the evening.

Symptoms!  Dyskinesia – not too troublesome today.  Dystonia – there, but bearable.   Tremor – fairly good today.  Motivation – none, but working on it!  Balance – fair to middling.  Voice – stronger than it has been for the last few days.  Energy – this morning, not too bad; this evening, none whatsoever.

Achievements!  2 out of 4 (but I did weed the front garden, and that wasn’t on my list).

Okay, so it’s not, strictly speaking, a symptom of Parkinson’s Disease.  Nor is it an effect or side effect of deep brain stimulation.  It is, however, a direct result of me losing my balance (which has been a tad poor over the last couple of days) just as I was getting to my feet in the bath last night.  I fell backwards into the bath (not even far enough to cause a decent tidal wave) and clobbered my right elbow on the side of the (cast iron) bath.  My wife heard the commotion (and probably me shouting out a four letter word) and came running to ensure that I was alright.  I was fine, although I realised I had hit my elbow with some force.  This morning I didn’t notice anything untoward until I sat down in my usual place and rested my right elbow on the arm of the sofa.  Ouch!!  Bloody hell!  My elbow hurts!  I can’t see any damage, no bruise showing, but it still hurts.  Dyskinesia is still a bitch, but I’m hopeful that it can be resolved when I visit Joseph at the NHNN next Tuesday.  Balance is still not great.  Dystonia is a complete pain in the……foot!

I have given myself a few tasks to achieve today.  My motivation is still low, but I’m determined to achieve something!

1. Get photos off my digital camera onto my laptop and post on Instagram for my wife’s business
2. Sharpen the very blunt Dutch hoe that I purchased last week
3. Shave (don’t laugh, it’s not as easy as it sounds)
4. Clean the bathroom
5. Vacuum the lounge and dining room

I can’t find my card reader for transferring the pictures from the memory card in my digital camera, nor can I find the cable to connect my camera to my laptop directly.  That’s a cracking start.  I know that the bench grinder I own, and which I intend to use to sharpen the Dutch hoe, is under the double bed in the spare bedroom.  After lying on my belly and struggling to locate exactly WHERE under the double bed it is, I have to come back downstairs and sit down for a few minutes.  I can see where the bench grinder is (I think) but I’m not quite sure how I’m going to be able to get it out.  It must be time to have a shave…

I have a shave (with minimal bloodshed) and then clean the bathroom.  That’s 2 items crossed off my list!  I come back downstairs and vacuum the lounge and dining room.  Another one crossed off.  3 out of 5 ain’t bad…  I take the dog for her (late) afternoon walk, feed her, feed myself (my wife isn’t going to be home until much later this evening), settle down with iPlayer and the EU Referendum back issues of Question Time and pour myself a beer.

I’m determined to sort out a few technical issues on my blog today.  I haven’t been able to load any photos to the blog for weeks now, and it’s starting to niggle me.  I have spent hours searching online forums for information and made pointless change after pointless change to system files.  Finally I try changing a setting that appears totally unrelated to the problem, and Hey Presto it’s working again!

The dog is keeping her head down again – it’s raining again, hurling it down for hour after hour and she wants none of it.  That suits me as well – even when I’m feeling motivated (and I’m not) I can’t say I really enjoy dog walking in a monsoon.  Also my balance is a bit dodgy this morning – I’ve had to catch myself several times this morning and generally feel a bit unsteady.  Dystonia is playing up in my right foot as well, and this really doesn’t help with the balance issue!  Dyskinesia?  Absolutely!  It’s getting a little worse as well.  The dyskinesia in my neck is slightly more noticeable, but not bad enough to make me turn the voltage down on my neurostimulator.  Moan, moan, moan!

I consider self-medicating with cannabis, but decide to wait until later in the day.

The rain eventually stops just after 2pm, and the dog and I get a little exercise.

I chat to a Facebook contact about her upcoming DBS operation, and hope that I have been some sort of help to her.  I wasn’t concerned about my operation at all, but then maybe I’m not normal!  “Watch the operation on YouTube” I urged her, “it’s very reassuring”.  And I sincerely think that it is.  But what if it freaks her out?  I’d feel terrible knowing that I had caused someone additional stress…  She seems level headed though, and I’m (almost) certain she will find it helpful!

Thoughts of self-medication arise, and I succumb.  Tremor suppression and dystonia reduction is always good – shame about the bloody dyskinesia!

Father’s Day.  I have a lengthy text from my son (who’s not a great one for sending cards), which says a lot of nice things – he’s a sensitive soul, my son.  There’s a card waiting for me downstairs from my daughter.  She knows me well, and it’s a funny card, no flowery verses for me!  Facebook messages from them both as well.

A brew, a Nutriblast, check my email and then it’s off to the supermarket (again!) for more barbecue supplies.  My stepson has invited us to his house in Hevingham for a barbecue later today, along with his dad and girlfriend, my other stepson and fiancee, and our little granddaughter.  The weather looked a little threatening earlier, but the sun comes out while we are shopping, so hopefully it’ll be okay later.  We got some sweet chilli sausages and cheddar burgers to chuck on the flames, and my wife is now busy making a “death by chocolate” kind of dessert 🙂

I noticed a little dyskinesia in my neck this morning when I switched my device on, but then again I was looking for it!  Once I’m up and moving around, it isn’t bothering me unduly so I leave the device settings as they are.  Left leg tremor is annoying me again, but I’m not about to increase the voltage again.  If it doesn’t subside this afternoon, I’ll self-medicate before we go out.

We go to wish my wife’s father a Happy Father’s Day, and then head over to Hevingham for the barbecue.  On the way I decide to self-medicate (cannabis, and no, I wasn’t driving!) and by the time we arrive my tremor has calmed right down.  I assist this relaxed state with a couple of beers whilst scoffing sausages, burgers and pork chops – I’m a bit of a carnivore, and a lot of a salad dodger.  We have sunshine again today, but without the biting North wind of yesterday, and it’s actually quite pleasant to be sitting in the garden.  We return home around 9pm and I have another beer (there’s a pattern emerging here…) and then head for bed.

Slept reasonably well until about 5am and then just dozed on and off for the next few hours.  At 8am I decided to switch my device on, and then I got up and got dressed just before 9am.

My wife and I live in a little terraced cottage in Southrepps, Norfolk.  I bought it as a project in 2011 – just as my Parkinson’s Disease began to progress more rapidly and drove me to seek medical advice.  Over the next 4 years I completely stripped the house and had walls replastered, replaced ceilings, installed central heating, sanded floorboards, installed woodburning stove, replaced skirting boards and architraves, etc., etc.  We moved into the cottage a year ago, having fallen in love with the cottage and the village, and deciding that we wanted to live in it rather than sell it on.  There remains a lot of work to be done to finish the house off because my Parkinson’s slowed my progress down to a crawl, and then stole my motivation.  Today my wife and I are discussing how we can make some more progress and make ourselves feel better about our home.  We decide that we need to complete a room.  Specifically, our bedroom.  Our bedroom has a lot of junk stored in it which we have got used to walking around and ignoring.  We decide to remove the various lengths of oak kitchen worktop offcuts that are leaning against (and covering up) a beautiful ornate cast iron fireplace, and store them in the spare bedroom.  We also plan to move an old pine chest from the lounge and put it my wife’s side of the bed, so that she has some more storage space and hang some pictures on the wall, rather than having them stacked against the wardrobe.  That leaves me to make a door for a cupboard and lay a piece of slate in front of the fireplace.  If we break it down into a number of smaller tasks, I think I’ll be able to achieve it, one step at a time…

We take the dog for a walk and then plan the rest of the day.  We are going to a barbecue at the house of one of my wife’s friends this afternoon, but the weather isn’t looking great (it was spitting rain when we walked the dog).  Never mind, we will go in any case because we haven’t seen my wife’s friend for 6 months and it’ll be good to catch up.

Tremor in my left hand is bothersome today, and I’m thinking about increasing the voltage on that side today.  After some umming and ahhing I decide to add another 0.1v on the left side (now 1.3v on the left, still 1.6v on the right) and see how it goes.  At the first sign of any negative effects I will set it back down again.  I have a little more dystonia in my right foot this afternoon, but dare not increase the voltage on the right.  The dyskinesia in my right arm, which I thought had been stabilised, has increased in severity slightly.  For the first time since my operation I spilt my drink last night when returning it to the table from my mouth, and then slopped my tea all over my nice clean rugby shirt this morning.  SO annoyed with myself!

We go to the barbecue.  The rain stays away, the sun comes out, the wind blows in from the North.  We sit in the garden, but it’s definitely weather for wearing a coat!  I had a couple of beers (and managed to avoid spilling them) and a little cannabis to calm the tremor.  Tremor definitely reduced, but dyskinesia unfortunately unaffected.  We stay and chat until I am flagging, and then return home to walk the dog and slob out in front of the telly.  It’s chilly enough that we decide to light the woodburner.  It is June, right?

 

I’m out of bed, dressed and sitting downstairs with a nice fresh brew when the alarm on my phone reminds me that it’s time to call the NHNN and try to get to speak to someone (anyone) about my device programming and its likely impact on my dyskinesia.  I get straight through to one of the team’s secretaries, which is encouraging, but am told that nobody is available to talk to me.  I agree to leave a message for someone to call me, and the secretary remembers my name as she writes it down – “Didn’t you call earlier in the week?” she asked.  “Yes, I did”.   “And nobody’s called you back?”.  “Nope!”.  “Okay, I’ll leave them a message”.  And that was that.

It’s 1.30pm as I write this, and nobody has called me back.  I didn’t hold out much hope, to be honest.  I know how busy they are, and the person who is there in front of them is inevitably going to have first call on their time.  It is very frustrating, though.

My motivation remains low today.  It’s difficult to explain how I feel.  I have so many things that I want to do, and yet no drive to do so.  The dog is my lifeline, because I have to take her out, and sometimes it’s the only thing that gets me off my backside and out of the house.  She seems to sense my mood, and doesn’t hassle me.  She waits patiently for me to get around to walking her – she knows I’ll do it eventually!  It never ceases to amaze me how empathetic dogs are – how they seem to read your moods and your body language.  Sometimes she appears to know what I’m about to do before I do!

My tremor seems a little better today.  It’s still there, obviously, but less troublesome than yesterday.  The dystonia in my right foot is no better, no worse – manageable!  I’m tempted to increase the voltage on my left side a notch – although the left side tremor is stable and not too much of a problem, it would be nice if I could reduce it further still without triggering the dyskinesia in my neck again.  Maybe tomorrow…

When I logged into Twitter this morning, I noticed the name of one of the neurologists on the DBS team at the NHNN come up on my feed.  I decided that I would tweet him about my predicament if I didn’t receive a call from one of the specialist nurses by close of business today – perhaps he could advise me, or suggest someone else that I could talk to.

I was just about to leave the house to take the dog for a walk, when the phone rang.  It was one of the specialist nurse team, and she was able to reassure me that they would very likely be able to “program round” my dyskinsia problem, so that cheered me up immensely.  I made an appointment to go for a tune up on the 28th of June, so that’s not too far away!

Dog walked, dishwasher loaded and switched on, supermarket visited, dinner prepared and eaten, beer poured.   Time to sit down and finish my blog for the day, and then book train tickets for the 28th!

I wake at 3.30am, and then sleep until just before 6am.  I switch on my device to control my morning tremors, and then get up and get dressed.

Downstairs.  I check my emails and find one from Joseph that I had somehow missed yesterday afternoon.  Unfortunately he is going to be away next week, but he could make me an appointment with someone else.  It seems he was so overloaded with work that he didn’t have time to read my email thoroughly, and he didn’t seem to understand that the cost of travelling to London for an appointment is a major consideration for me.  I need to be assured that the dyskinesia is something that can be adjusted out before I commit to spending almost £100 in travel costs.

I make tea and coffee, and take a mug of coffee up to my wife who is still in bed,  having not had such a good night’s sleep as I did.  I tell her about the email, and she agrees with me that I really need to speak with someone on the DBS team before committing to an appointment.

My tremor is getting a little stronger in my right arm and my motivation is very low again, although everything else seems pretty well controlled right now.

My wife appears downstairs and takes the dog for her morning constitutional – bang goes my reason to get out of the house this morning.  She leaves for work, and I sit on the sofa and do very little for most of the day.

I do manage to call the NHNN again and get hold of one of the secretaries.  None of the specialist nurses are available and she recommends calling back tomorrow morning at 9.30.  I will!  I put a reminder on my phone.

The time for the dog’s afternoon walk is fast approaching and the heavens have opened again.  It rains for 3 hours solid, and the dog doesn’t pester me as she usually does.  She doesn’t like going out in the rain.

I load the dishwasher and put it on.  My wife arrives home and cooks us some dinner, and then we sit and watch some telly before getting ourselves a relatively early night.  I really must try to do a little more tomorrow!

Slept well again!  I’m helping my wife hang some curtains at a customer’s house this morning, so we get up at a reasonable time (7.45am) and get the day started with a cup of tea (me) and coffee (my wife).  My wife takes the dog for a quick walk while I drink my tea and check email, and then we leave the house.  It takes a couple of hours to hang the 3 pairs of curtains and a Roman blind.  My wife is the one up the stepladders doing the work, while I pass her the curtains and then take photos for her business’ Facebook page and website.

When we get back home my wife leaves for Hevingham to babysit our granddaughter again, and I feel that I have a bit more energy today, so elect to do a little work around the house before she returns.  I freak the dog out a bit when I pick up the vacuum cleaner (she hates the noise, and usually retires to her bed until the coast is clear), but she’s okay when she sees me taking it upstairs.  I give the bathroom a thorough clean (including the windows – inside and out!) and then vacuum our bedroom.

I take the dog for her afternoon walk, and she has a couple of other dogs to chase around on the field for a change.  On our way to the field, I bump into Berni Marfleet (one of the Open Studios artists that we visited on Saturday) who had come to tell me that we had won a meal in The Vernon Arms by completing the Smallburgh to Southrepps Art Trail.  Absolutely made up!

We return home and I’m feeling pretty exhausted by this time, but want to prepare the dinner as well.  I manage to prepare some veg, but when I go to peel some garlic to go with the chicken breasts that my wife took out of the freezer this morning, I have to sit down and rest – fatigue suddenly swamps me, and my balance is suffering too.  Tremor increases as well, and I know that the time for a little self-medication may be approaching.  My wife returns and finishes what I had started, and then we eat.

I self-medicate with a beer – I’m saving the cannabis until bedtime, given the success of the last 2 nights.

Cannabis is a wondrous thing.  I was asleep last night before I even knew it, and slept right though until 5.30am.  I snoozed until 7am and then turned the power on and got up.  My wife has to be in Hevingham at 8am to pick up our granddaughter – we are babysitting for the day – and so is out of the house at 7.40am, having not even had time to drink her first cup of coffee of the day.

While she is out I tidy the kitchen a little, finish loading the dishwasher, and vacuum downstairs.  Then the dog takes me out for a walk, which is just as well because the weather isn’t looking too bright here today.

My tremor seems fairly well controlled on my left side – it’s there, but bearable.  The right hand side is another matter.  It varies from being moderate to severe.  So does the dyskinesia.  No chance of moderating the tremor by increasing the voltage – I don’t want to make the dyskinesia any worse than it already is.  I could really do with speaking to Joseph – I want to know if there is any prospect of “tuning out” the dyskinesia as well as the tremor, or if I’ll just have to put up with it and hope it goes away of its own accord.  He still hasn’t replied to my email, and hasn’t called me back following my answerphone message of yesterday.  I’m getting a little impatient so try calling the secretaries to see if I can find out what’s going on.  Neither of the numbers in the secretaries office is answered, so I leave another message and hope that someone will call me back.

Motivation is still very low, balance isn’t too bad, but both arms are quite stiff and weak – it’s a big effort just getting out of a chair and standing up.  Once I’m up, it’s fine – it’s the getting there that gives me the problem.  I’m also not very flexible at the moment, and am having difficulty bending down to put my socks on or tie my shoelaces.  I got really severe cramp in my right hip this afternoon – not had that happen since before my operation.

My wife and I spend much of the day cooing over our granddaughter (my wife), finding her entertainment on youTube (me), feeding and changing her (my wife) and preventing the dog from washing her face or trampling on her (me).  By the time it’s time to return her to her parents I’m feeling quite knackered (and I haven’t really done very much!).

While my wife is taking her back to Hevingham, I take a delivery of more non-prescription medication (beer) from Asda!  I also intended to walk the dog, but the heavens opened, thunder crashed, the road became a river and our dog stayed right where she was (on the sofa) and kept her head down – she’s no fool!

I managed to cook dinner for a change.  Sticking a rack  of ribs in the oven presented no problem, but cutting up the veg is a struggle.  I manage it, though, without damaging myself.

Netflix and chill.  Beer.  Cannabis.  Bed.

I wake at 5.30am.  I’m not ready to get up yet, but I’m wide awake and no chance of going back to sleep with the amount of tremor I’ve got going on.  Dystonia in my right foot is also really bothering me.  After lying there awake for half an hour I decide to switch the neurostimulator on.  Immediately my tremor and dystonia is moderated, and I am able to grab a couple more hours of sleep.  When I wake up again, just after 8am, I am quite uncomfortable and starting to thrash around again, so that side effect hasn’t disappeared just yet!

My wife wants to go shopping in Wroxham for some baby stuff (for our granddaughter) and some picture hooks (so we can start moving our picture collection out of the loft and onto our walls).  Whilst we are there, the heavens open and there is a deluge of biblical proportions.  We wait inside a store for almost 20 minutes for it to abate, and when we do emerge it is to the sight of the roads running like a river and the pavement being completely flooded!  British weather never ceases to amaze me.

Tremor on the left hand side is a little better today, and I haven’t noticed any increase in dyskinesia in my neck as yet.  I will wait until tomorrow before increasing stimulation any further on that side, though.  Tremor on the right hand side is quite pronounced, but I still don’t dare to increase the voltage on that side for fear of provoking more dyskinesia in my right arm and leg.  I call Joseph at the NHNN because I still haven’t had a reply to my email of last Wednesday and I need some advice from him.  There’s no reply, so I leave him a message to give me a call to discuss my situation and current concerns.  Still no reply by the time this evening comes around, so will have to try ringing the secretary tomorrow – perhaps he’s on holiday?

I self-medicate (a really nice bottle of Chateauneuf-du-Pape that a friend brought around and we didn’t get to open, and then a little cannabis to finish the job) and this calms everything down nicely.  I have a little more just before going to bed to see if I can avoid lying awake like last night.

Slept well and woke at 6am.  I have quite a lot of tremor going on this morning, and switch on my device well before I decide to crawl out of bed.  I haven’t upped the stimulation on the left as yet, and think I’ll hang fire and see how the day goes.

My wife disappears off to go swimming with our granddaughter, so I take the dog for a morning walk and then sit down, drink tea, scoff biscuits and check my email.  My tremor is still strong in my left leg, so I decide to increase the voltage by 01.v – now 1.2v on the left, still 1.6v on the right.  I feel the tremor decrease almost immediately.  Hope the dyskinesia in my neck stays away.  I’d really love to increase the voltage on the right hand side as well, but I know it will make the dyskinesia in my right arm unbearable.

My car has been sitting on the road, unused, outside our house for the last 7 weeks.  My wife drove it just the once, at my request, to keep everything from seizing up.  I have been out and started it on a couple of occasions, but it hasn’t been started for a couple of weeks now, and the battery is almost completely dead.  My wife returns, and I nick her car to jump start mine.  The engine starts, and sounds so nice I just have to take her for a spin.  It feels good to be driving again – the first time in about 3 or 4 months.

My wife and I are going to dinner at her eldest son’s house this evening, and before we leave home I decide I need to spruce myself up a little – my hair is getting quite long (for me) and my stubble is fast becoming a beard.  I usually cut my hair very short – grade 1 – and I’m a little bit nervous about running the clippers over my newly misshapen head.  My wife offers to do it for me, and I gratefully accept.  It feels good to have short hair again.  I also have a shave.  Always a wet shave – never used an electric razor in my life.  It’s quite a challenge with the dyskinesia but I manage to make a half decent job, with only minimal bloodshed, and look and feel a bit more human.

When we get home and go to bed, I switch my device off as usual.  My tremor returns pretty much immediately, and for the first time I really do struggle to relax my muscles and get to sleep.  I get there eventually, but I was thinking I’d have to switch the power back on.  It just goes to show how my Parkinson’s is continuing to progress in the background…

Amazing!  Both my wife and I sleep well!  Although sleep isn’t unbroken, neither of us lay awake for more than a minute or two.

My wife is going to work this morning because she has a job that has to be finished today.  She’s been working too hard and getting stressed which is really not good, so she has agreed to my suggestion that she takes  a couple of days off next week.

I’m trying to improve my blog today…  Had a comment from a visitor that she wanted to subscribe via email, and couldn’t find a link to do so.  Hmmm!  That would possibly be because I had neglected to consider subscriptions, so I did a bit of research and added a link to subscribe and also links to my RSS feeds.  Can’t get the flaming subscription code to work, though!!  Tried everything I can think of, but failed.  Last ditch attempt – remove the software that enables subscriptions and reinstall it from scratch.  Success!!  That cheers me up somewhat!  Now all I have to do is figure out why I cannot load images to the blog at the moment.

My wife returns around 2pm, and we decide to go out to see some of the Open Studios in our area.  We visited Heather Webster in Smallburgh, and bought a lovely little watercolour of Horsey Mere.  The highlight of the afternoon, though, was Berni Marfleet in North Walsham.  He makes abstract sculptures from scrap metal, and we both really loved his work – his sense of humour comes shining through and puts a grin on your face!  I can definitely see us coming back here sometime to buy something to go in the garden.

By the time we get home it’s food-o-clock and beer-o-clock, so we eat (poached salmon and veggies) and open a couple of bottles of Hobgoblin.  Tremor in my left leg is really bothering me today, even with the calming effect of the beer.  I’m seriously considering increasing the voltage on my left hand side tomorrow – will see how I feel in the morning.  Other than increasing tremor, everything else remains pretty much the same.  My balance hasn’t got any worse, and neither has my dyskinesia or dystonia.  If it wasn’t for the dyskinesia, I’d whack the voltage up a few notches to control the tremor, but I think the voltage on my right side is as high as I want to go at the moment.  Increased voltage on my left previously provoked dyskinesia in my neck, and that was really bloody uncomfortable.  I’m hoping that if I only increase the power a little, I won’t suffer too badly with that again. My voice has been quite weak today (and yesterday, come to think of it) and I wonder if that is due to the lower settings on my neurostimulator at the moment.  I’ve been on the minimum settings for quite a while now, but sometimes the effects of more or less stimulation can take days to emerge.

Time for bed.  Switch off.  Tremor increases in a minute or two and I wonder if I can get to sleep.  I concentrate hard on relaxing my muscles and I’m soon in the land of nod.

It was a better night last night.  I was awake at 1.15am, 4.45am and 6am, but I went straight back to sleep again, so not too much of a concern.  My wife’s alarm goes off at 7.15am, and we survive 2 hits of the snooze button before getting out of bed.  Power on.  Get dressed.  Downstairs.

My wife delivers tea, Nutriblast and her smile to me.  Don’t know what I’d do without her.  She disappears off to work, and I sit and try to make some plans for the rest of the day.

It’s a grey day here in North Norfolk.  It’s not exactly raining, but it’s in the air when I take the dog for her first walk of the day.  She doesn’t mind it though…  I get back indoors as soon as possible, and scan my “To Do” list for indoor tasks.  I need to make a couple of internet purchases, so spend some time finding the best prices and placing the orders.  That’s 2 more items crossed off the list!  Around lunchtime I mildly self-medicate (cannabis) because my tremor is getting to me a little, and I still don’t dare to increase brain stimulation because of the dyskinesia in my right arm and leg.  The cannabis helps a little and I’m not making quite such a hash of typing my blog!

Motivation is still a bit of a problem.  About the only thing that gets me off my backside and out of the house is the dog.  She knows it’s time for her afternoon walk and nags me until I get up and find her lead.  I get back from dog walking and, while I’m still on my feet, I empty the dishwasher and tidy the kitchen so my wife doesn’t have to do it when she gets home from work.

Today I’m going to give myself a kick up the backside.  Make myself achieve something!  Anything!  I slept badly last night, waking up a multitude of times starting with 12.30am, and then 2, 3, 4, 5am and wide awake just after 7am.  Neurostimulator on (my controller beeps at me for the third day running, letting me know that the batteries are almost dead.  Must change them today), get up, get dressed.  Our dog is excited at the prospect of breakfast, so I’m soon downstairs and filling her bowl for her.  By the time my wife appears, I’ve made her coffee and brewed my tea, so that’s something achieved!

She prepares my Nutriblast, and soon afterwards departs for work.  My symptoms today… much the same as yesterday.  Possibly my tremor is a little more pronounced, but I’m able to type my blog entry without too much trouble, although my left leg tremor means that my laptop is bouncing slightly as I type.  Still nowhere near as bad as I was prior to my operation.  Not even in the same ballpark.  Signature?  Looks like mine.  Cup of tea?  Unspilt.  I’m doing fine.

Still can’t get through to Charlie Mates.  Both his home number and his mobile number ring and ring but nobody answers.  I’m worried about him.

I get myself out into the garden, fire up the petrol strimmer, and then attack my next door neighbour’s horrendously overgrown garden!  After about 20 minutes I’ve reduced it to nettle mush.  It all needs raking up, but that can wait for another day.  I feel I have actually achieved something!

No reply from Joseph at the NHNN yet.  If I hear nothing by tomorrow afternoon, I will try giving him a call.

Changed the batteries in my device controller!  (Achievement!  Crossed it off my list!)

Designed a receipt template document for my wife’s business, and prepared a receipt for her to email to a customer!  (Achievement!  Crossed it off my list!)

Had a phone call from Charlie Mates this evening.  Had been out and about with an old friend of his.  I can only imagine he had left his mobile at home!  I’m very relieved to hear from him, and I know he’s okay when he says “okay, Ian – take care and be good… and if you can’t be good, be effing evil!” and he cackles as he hangs up the phone.  Crossed it off my list!!

 

Another good night, although I did wake at least once, I went back to sleep before I even looked at the clock.  My wife had a bad night’s sleep so it could have been her moving around that made me wake.  I’m fully awake at 6.45am but don’t switch on and get up until 7.30am.

Downstairs.  I make a brew and some fresh coffee for my wife.  Another little benchmark – being able to carry my tea to the lounge and put it down on the table without spilling it.  I don’t spill the tea, so that’s okay.  Dyskinesia almost makes me knock it off the table, but that’s a whole different issue.  Everything appears to be stable at the moment.  Tremor is about the same as yesterday and the day before.  So is dystonia.  So is dyskinesia.  Moodwise, my motivation is down the toilet at the moment.  I assume that, just as my tremor is less controlled on my current (no pun intended) low voltage settings, so my mood is less elevated for the same reason.  I’m finding it very difficult to achieve the simplest things.

I have achieved the composition of an email to Joseph at the NHNN, though.  I email it to my wife first, wanting her opinion on whether I have covered all of the relevant points and that what I have written is clear.  I get the thumbs down because she feels that I have understated the severity of the side effects.  She is more than likely correct, so I amend the email, and then send it to Joseph.  Crossed it off my list!!!

The dog is pestering me for a walk – she knows the routine better than me, so I put my boots on and take her to chase a ball on the field by the village hall.

This evening the tremor is getting to me a little, so self-medicate (cannabis and alcohol) mildly, and this helps a lot!

I turn off my device when I get into bed, and notice that the tremors are getting a little more persistent now, and return much more quickly when stimulation is turned off.  I’m not yet struggling to get to sleep because of them, but it is certainly more troublesome.

Amazed to sleep right the way through until 6.55am!  Had a really good night’s sleep, and feel rested and refreshed.  Out of bed.  Switch on.  Get dressed.

Downstairs.  Drink my cuppa and Nutriblast that my wonderful wife has made for me, and go through my list of tasks for the day.  It’s more of a wish list, really – it contains perhaps a dozen things that I need or want to achieve – write an email of complaint to Royal Mail customer services…  pay the water bill…  order more LPG…   search Gumtree for a 12v fridge for the boat…  email Joseph at the NHNN…   Each task seems simple enough, innocuous, attainable, but somehow today my motivation is a little on the low side.  It’s almost midday now, and I haven’t crossed off a single task, although I have done a few things that aren’t on the list.  I’ve walked the dog – it’s a beautiful sunny day here, and it was no hardship.  I’ve put the dishwasher on – my solar panels are generating enough electricity so that I’m washing the dishes for free, and that’s good!  I’ve posted another picture to Instagram, Twitter and Facebook for my wife’s business.  I’ve been out in the back garden enjoying the warmth of the sun and admiring the blooms that my lovely Norfolk family planted for us while I was in Hospital; that isn’t a task but it does make me feel good.   Spent an age trying to upload some pictures to my blog, but WordPress won’t work properly.  I try several different solutions and fail – will have to pester my hosting company to see if they can sort it out for me.  Tried calling Charlie Mates to see how he’s getting on – he sent me a text message last week telling me how sad he is at the moment (missing his wife).  I replied to him but haven’t heard back from him.  Can’t get an answer on either his home phone or his mobile, and now I’m worried about him.  It was on my list to call him, but I can’t cross that one off just yet…

Assessing my symptoms.  Moderate tremor in left leg and right arm (in spite of self-medicating with cannabis – it was worse this morning, mind you),  mild dystonia in my right foot.  Mild dyskinesia in my neck and right leg.  Moderate to severe dyskinesia in my right arm – varies depending on what I’m doing.  If I’m sitting here typing my blog, it’s moderate.  If I’m walking up the stairs, it’s severe and I’m thrashing my right arm around like a thing possessed.  Balance, not too bad.  Appetite, too good for my waistline.  Motivation, low.

Paid the water bill – crossed off my list.  Ordered a Dutch hoe on eBay – crossed off my list!  Made a start on an email to Joseph – will finish it after walking and feeding the dog!

It’s time for bed now.  I still haven’t finished that email.  Hopefully I will feel more motivated tomorrow and will achieve a little more.

I get up just after 8am, having woken at 5.45am and dozed.  I did wake a couple of times in the night – 2.30am and 4am – but went straight back to sleep.

I switch my neurostimulator on before I go downstairs, and wait for the dyskinesia to return.  I don’t have long to wait, although on the plus side my tremor and dystonia is fairly well controlled on my right side , and tremor on my left side is only moderate.  My right arm is thrashing around quite a lot, and then I notice it also in my right leg.  I had noticed it ever so slightly yesterday afternoon, but thought (prayed) that I was mistaken.  It certainly isn’t severe, but I am concerned that it will get worse, as my right arm has done.   I’m finding it quite difficult not to throw my mug across the room when I go to pick it up to drink my tea.  It’s really quite uncomfortable, too.  After a couple of hours I decide that I cannot tolerate the Group ‘A’ settings and switch back to Group ‘B’, 1.1v on my left side and 1.6v on my right.   Dyskinesia reduced in arm, neck, leg.  Dystonia increased in right foot.  Tremor increased in right arm, left leg.  It’s a balancing act.

I check my signature (my benchmark) and it looks like my signature should, so that’s good.

Unless this damned dyskinesia suddenly disappears, I don’t see what else I can do with regards to exploring the settings on my device.  I will email Joseph with the data I have collected so far, and see what his opinion is.  My feeling is that I need Joseph to re-program my device, but if the dyskinesia is going to be stimulated by any changes he makes then it will be a wasted trip.  It’s a difficult call, and one that requires input from  Joseph, because he is the expert.  It costs me about £10o and a day away from home to go to the NHNN for a simple 30 minute appointment.  I don’t begrudge the time, but can’t really afford the cash!

I get through the day, walking the dog, making phone calls, posting on Instagram, Twitter and Facebook for my wife’s soft furnishing business, writing my blog.   My symptoms remain fairly stable, and it’s just the right arm that remains somewhat troublesome.  I’m on the lowest settings that I have programmed into my device, so the only course of action if the dyskinesia gets too severe is to switch off.  I really don’t want to do that (other than when I’m asleep).

Had an even better night last night.  In fact, probably the best night since leaving hospital.  I woke at 6.30am, and dozed until 8.30am when I crept out of bed (so as not to wake my wife), switched the power on, got dressed and went downstairs to feed the dog and make a brew.

I have 2 groups of settings on my device – Group ‘A’ and Group ‘B’.   I am currently on the minimum voltage settings of Group ‘B’ (left 1.1v, right 1.6v), having tried as many of the different settings as possible, and keeping note of my responses to each of them.  I now feel that the time has come to do the same with the Group ‘A’ settings, so switch my device over to Group ‘A’ and reduce the left and right voltages to the minimum permissible – 1.6v on the left, 2.1v on the right.

I feel some tingling in my extremities as the new settings take effect, and my tremor seems to be reduced a tad on both sides.  I’m going to explore the settings for my right side first, but will leave it until I go to bed tonight before increasing the voltage.

Whoops!  The higher voltages of Group ‘A’ have brought dyskinesia on with a vengeance in my right arm.  Also in my neck, but nowhere near as severe.  Have to see how it goes…

I fight the twitching during a trip out with my wife to the local garden centre, and also whilst strimming the overgrown paths around our allotment.

As part of the Norfolk & Norwich Open Studios, my wife and I go to see Sheila Robinson, a local artist and friend of ours.  While sitting and chatting with Sheila and her husband, my dyskinesia is getting so strong that I decide to go back to the lower voltages on Group ‘B’.  Immediately it abates, and  I’m feeling better.  Tremor returns, but it’s all manageable.  When we return home, I switch back to Group ‘A’ and the dyskinesia returns in an instant.  I’ll stick with it until bedtime, but I honestly cannot see me staying with Group ‘A’ settings unless things improve on that front.

I had another good night.  Only woke up once (4.30am) and then slept until about 8am.  I lie there awake, and feel my tremor starting up – slowly at first, then stronger and stronger until I can feel that I am actually shaking the bed.  I do a mental symptom check.   Tremor (hell, yeah!), dystonia (um…. yes, but bearable), dyskinesia – right arm (yes, but only slight), dyskinesia – neck (perhaps, but really mild).  I switch on my neurostimulator, and blessed calm ensues.

Downstairs, my head is moving excessively again, and my neck feels very sore.  I sit for a couple of hours, waiting to see if this dyskinesia will subside.  It doesn’t.  It gets worse.  Much worse.  My resolve to stick to each setting on my device for at least 24 hours goes straight out of the window, and I reduce the voltage on my left hand side to its minimum (1.1v).  Almost immediately the dyskinesia in my neck is virtually gone.  It’s an incredible relief, and I spend the rest of the day in a much happier frame of mind.

I haven’t been able to provoke the impulsive behaviour that I encountered previously, although I didn’t get to increase the stimulation on my right side beyond 1.6v because of the severity of dyskinesia in my right arm (I could have increased it to a maximum of 1.9v), and although I did get to the maximum voltage on my left side, I had to reduce it after a couple of hours because of my neck.  It’s very difficult to know if I would get the same results from the same level of stimulation on two different days.  Presumably my brain is still healing from the surgery (I have read it takes up to 3 or 4 months, and certainly Joseph told me I would probably feel very tired for about 3 months), and so is reacting differently to stimulation as it does so.  All I can do is log the results as they happen, and then hope that we can make some sense of it all when we next visit Joseph for a re-tune.

My wife and I are out for the afternoon – she has a soft furnishings business, and is going to a boatyard in Brundall to measure up for replacement seat covers for a boat.  I am just tagging along for the ride.   Even though I have reduced my left hand voltage, tremor on my left side doesn’t return with a vengeance, it just lets me know that it is there.  It’s manageable!  I get through the afternoon without feeling quite so self-conscious (the dyskinesia in my neck had been quite pronounced and very noticeable) and tremor is definitely well managed.

We are going to have dinner with my wife’s youngest son and his girlfriend this evening, and I self-medicate with cannabis in the car on the way there (tremor in my left leg becoming more persistent, tremor in my right arm a little worse, too – probably because I’m getting tired).  Everything becomes a little calmer on the tremor front!  We eat Chinese takeaway, drink a little Hobgoblin (well, I do), and return home in time to collapse into bed.

 

Beer not only helped me get off to sleep last night, it kept me asleep until 4am!  I slept again, and woke just before 7am.  My wife has an early start this morning, so by 7.20am she is out of bed and dressed.   I have a slightly more leisurely start to the day, assessing my dyskinesia prior to turning my device on.  Yep! Still there in my neck and my arm!

Out of bed.  Switch on.  Get dressed.  Downstairs.  Brew.  Twitch.  Curse.

Our friends arrive just after 10.30am, and we take the dog for a quick walk before heading out to Sheringham and Holt for a wander around.

Dyskinesia seems about the same as yesterday, I don’t think it has got any worse.  Very uncomfortable.  Very self-conscious.

We walk around Sheringham town centre, stop for a drink and a bite to eat (cheesy chips for me!) in The Crown, then drive to Holt.  We don’t stop in Holt, which I am glad about because the earlier walk has really wiped me out.

Back home I try to sort a few things out before my wife gets back from work.  We have invited our friends over for dinner – green Thai curry followed by Banoffee Pie.  I run the vacuum cleaner over the rug in the lounge, and then start preparing the ingredients for the curry.  I’m a little safer with a sharp knife than I was prior to my operation, but the dyskinesia makes for interesting times.  Manage to cut the chicken breasts up without stabbing myself, chuck them into the pan with the coconut milk and curry paste, and leave the rest of it to my wife (and she makes the Banoffee Pie, too!).  Tremor is prevalent in my right arm, and dystonia ever present in my right foot – both less severe than prior to my operation.  I self-medicate (cannabis) before our friends are due to arrive.  Tremor and dystonia are significantly calmed.

Our friends arrive, eat curry and Banoffee, drink beer and wine, chat and listen to music, and return to their camp site just after 10pm.

Tremor is virtually non-existent in my left arm and leg, but I increase the voltage to the maximum setting on the left side (1.9v) before switching off and getting into bed – it’s important to find out if it was the left hand side that was causing the impulsive behaviour before.  If impulsive behaviour doesn’t re-emerge then I can turn it back down a few clicks and perhaps explore the higher voltage settings on the right hand side (provided dyskinesia doesn’t get any worse).

Feeling very grumpy this morning.  I had a really broken night’s sleep, waking at 12.30am, 1.15am, 2.30am, 3.15am, 4am, 5.45am, and finally 7am.  I can feel the dyskinesia in my neck already, so it would seem that it isn’t caused by the neurostimulator, although it may be exacerbated by it!  I switch the power on before my feet have even touched the floor, enjoying the “Wow!” feeling that comes with it.

I know it’s going to be a difficult day before I have even finished getting dressed – my neck is still very stiff, the kind of stiffness you get from sleeping in a cold draught, and the dyskinesia in my neck is making my head move quite violently.  Every time it does, expletives abound – plenty of effing and blinding here this morning, I can tell you.  The dyskinesia in my right arm is still there as well, but is nowhere near as painful (more annoying than painful).  I went to sleep last night and woke up this morning with very uncomfortable dystonia in my right foot, but this has reduced greatly with the switching on of my device (if I were at all religious, I’d say thank God for small mercies – but I’m not, so just thanks for small mercies).

Our dog drags me out for morning walkies, and that gets me moving a little better.  At least it isn’t raining this morning, although it is very breezy here.  The last two days have been horrendous – torrential rain and high winds.  My mate from Brighton, his partner and their daughter are travelling to nearby Overstrand today, and are camping there for a couple of days – I do hope the weather is kind to them.  They are taking my wife and I out for dinner in The Vernon Arms tonight – provided I can get a table!

Table booked.

Our friends arrive just after I have self-medicated (cannabis) to deal with significant tremor in my right arm, and remark on how calm I appear to be.  Dyskinesia is still there in my right arm and my neck, but it is not as painful as it was this morning, and is bothering me less by this time.

Our dog gets plenty of attention from their daughter, who is desperate for a dog of her own.  She tells her mum and dad that she’s now decided she wants a labrador!

My wife arrives home from work, and we head off to The Vernon Arms.  Good company, good food and good beer make the next few hours disappear in a flash.  Our friends depart for their camp site, and my wife and I head for bed.  I add another 0.1v (up to 1.8v now) to my left side before switching my device off for the night.  The beer ensures that my tremor doesn’t keep me awake.

A slightly more disturbed night.  I awoke at 2.30am, 3.15am, 5am and 6.30am.  It was okay though, because I wasn’t lying there awake – I went straight back to sleep. I certainly seem to have been waking up more frequently during the night since the operation.  I had thought it was due to the neurostimulator being switched on while I was asleep, but I’ve been turning it off at night for some time now and my sleep pattern remains very erratic.  I got up and switched on just before 8am.

Downstairs, cup of tea, Nutriblast, check email.  I notice dyskinesia in my right arm once more, but at about the same level as yesterday and definitely manageable, if a little annoying.  I become aware that I’m moving my head a little more than usual, and it’s quite uncomfortable because my neck is still stiff following the surgery.  It becomes apparent that I also have some mild dyskinesia in my neck.  It certainly wasn’t apparent yesterday, so may be a consequence of raising the voltage on my left hand side.  To be monitored!

As the day progresses, my dyskinesia remains fairly stable.  Still twitching my right arm and head, but not any worse than first thing this morning.  Tremor in my right arm has been quite strong today, and it is hard to resist the temptation to increase the current on my right side.  It’s just after 5pm now, and having put up with it all day I am now going to mildly self-medicate with cannabis to calm the tremor a little.

Cannabis definitely helps me.  My GP says he can’t prescribe medical cannabis for me because (1) it isn’t licensed for use for Parkinson’s Disease, and (2) it isn’t proven to have a beneficial effect on Parkinson’s Disease.  Yet he is prepared to prescribe drugs which are far more powerful, which he knows don’t work for me, and which make me really unwell.  How can that be right?

I turn up the voltage on my left side to 1.7v, switch my device off and go to bed.  My tremor returns very quickly tonight, and I lie awake shaking for what seems like an eternity (but in reality is only about 30 minutes) until I drop off to sleep.

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!

 

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…

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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!!!!

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.

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.

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.

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).

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!

 

My son and his girlfriend are going back to Dorset today

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.

My son and his girlfriend travelled up to Norfolk from Dorset this morning.  He’s been very worried about me having the operation, and he’s now anxious to see me to make sure that I’m still the same person I was before, and also that it has had the desired effect.  He is really chuffed at the sight of me, virtually tremor free, and definitely the silly bugger that I was before having holes drilled in my skull.

My wife’s family and my mum and brother want to come and see me, so we decide to meet in The Vernon Arms.  I arrange with the landlord to serve us some cheesy chips when everyone arrives.  I manage to buy a round of drinks this time, and it’s a very jolly evening.  I’m on cloud 9, and chatting away to my wife’s brother…  My wife came over to us and asked “are you okay?”, “yes,” I replied “but I think I’ve just told your brother that I love him!”.  And so I had!  Impulsive behaviour coming to the fore again, probably because I was on a bit of a high seeing my son, my mum, my brother etc. – I think the additional stimulation from my device just tipped me over the edge.  I also drank far more beer than was (probably) advisable, although not enough to give me a hangover the next morning.

Up and at ’em!  Painkillers, breakfast, check out of the hotel, cases stored for collection later, then to the NHNN for a final appointment with Joseph before going home.

Joseph was happy with the existing settings, no side effects emerging, so he left things as they were.  We said goodbye, gave him a large chocolate cake to share round, and a card that simply said inside “This is a sample of my best handwriting” – something that Joseph had had me write many times before to assess my tremor/handwriting, and which was now improved beyond belief.

We collected our cases from the hotel, and headed off to Charing Cross to catch a train to Hither Green, where my wife’s car was waiting outside Fig Tree House for us.

We left a card and a box of chocs for John and Ruth, the owners of the B&B, and also paid a visit to my pal Gerry in his log cabin at the bottom of the garden.  Loaded the car up with our luggage, and set off homeward around 1pm.  Sat Nav said we should be home around 4.30pm, but it was after 6.30pm before we arrived.  Not sure what happened, probably just sheer weight of traffic on the Friday afternoon of a bank holiday weekend, but we were in almost stationary traffic between the Blackwall tunnel and the M11 for a couple of hours.

We arrived back at Southrepps in heavy drizzle to find a small crowd in my back garden.  My wife’s 2 sons, their girlfriends and her ex-husband and girlfriend had transformed the place while I had been in hospital.  It had resembled a municipal tip beforehand, with stacks of tree half filling the space (from a 30′ Leylandii that I had had cut

down a couple of years before), an old bicycle, stove pipe and other assorted rubbish that I had nowhere else to store, and no energy or inclination to sort out.  Now it was actually a garden, with flower beds, paving slabs that had emerged from beneath all of the crap, a garden table and chairs, bird table, new fencing panels to replace the ones that had expired, and gates that opened and closed!

We retired to our lounge, out of the drizzle.  Two minutes later there was a knock at the door – it was the landlord of The Vernon Arms, clutching a bottle of champagne and two glasses – a gift from some of our neighbours who had seen us arriving home!

We decided to retire to The Vernon Arms so that I could buy them all a drink as a thank you for my fantastic garden.  I managed to order the drinks, but wasn’t allowed to pay for them.  The landlord bought the round – “I look at it as an investment, Ian” he said, “you aren’t shaking any more, so you’ll be able to drink more beer in future!”.

Everyone has been so kind.

The usual routine… wake in some discomfort, take painkillers, get dressed and scoot down to the restaurant for another fab breakfast.

Another appointment with Joseph at the NHNN at 10am.  We travel by underground again –  really suffering with my legs, probably due to all the exercise I have had this week.  My balance isn’t great at the moment, either.   Joseph re-programs the left hand side, setting it back to use the contacts that he originally set it to when he programmed my device the very first time.  This was the setting that had caused me to behave slightly impulsively previously.  It is unclear if it was the left hand setting, the right hand setting, or both settings which caused the problem, so he wanted to see if the side effect re-emerged if he only set one side back to that setting.  Hope that’s clear!

I really wanted my wife to see The Lion King, having seen it myself on 2 previous occasions.  I thought it was something that she would really enjoy, so we went to Covent Garden on the way back from hospital, and paid a visit to the theatre box office.  Baseball cap off, wide eyed lady behind the counter.  “Any chance of a discount?” I asked.  Two top price tickets in the stalls for an absolute bargain price was the response.

We returned to The Cotton Rooms via the supermarket, grabbing some more ready meals and bottles of Hobgoblin, and being entertained by a street performer near to Covent Garden underground along the way.

Back at the hotel we have coffees, showers, get changed and scoff our ready meals.  There is time for a sit down in the lounge, more coffee and a read of the newspaper before we have to head back to Covent Garden for the show.

I’m feeling pretty good, and no side effects as yet.

The show is absolutely brilliant, and my wife said it was her favourite out of the 3 shows we have been to this week.

We hit McDonalds again on the way back to the hotel.  I am acquiring a McFlurry habit!  It does seem to go well with the Hobgoblin 🙂

I wake in discomfort, but co-codamol soon sorts that out.   We head down to the restaurant for breakfast, and then we are off to the NHNN for a 10.30am appointment with Joseph.  We catch the tube this morning, rather than walking.  It takes about the same amount of time, but I’m feeling a little more tired than yesterday, and my legs are really aching – my calf muscles are really tight.

Joseph seems happy that things are back under control, and makes some minor adjustments to my settings.  That’s it!  The rest of the day is ours (unless I decide my settings are causing me a problem – Joseph is happy for me to return any time, which is good to know).

I decide that my wife needs to see another show, and so we decide to see if we can get  tickets for The Woman In Black.  My head gets extremely hot under my baseball cap, so as we enter the box office I remove it (the cap, not my head!).  The bloke behind the counter looks at my head, eyes wide, and offers me the most expensive seats in the house for the price of the cheapest.  It’d be rude not to, so we buy the tickets and head off back towards the hotel.

Into Sainsbury’s, grab a couple of ready meals to heat up back at the hotel, and a couple more beers to enjoy later when we get back from the theatre.

Back at the hotel we heat and eat our food, then go to our room to chill out for a while before showering, shaving (me, not my wife) and heading out to Covent Garden.

The show is brilliant, and we both enjoy it even more than last night, although I was expecting it to be more frightening!  It made my wife jump in her seat a couple of times, so perhaps I’m just difficult to please.  McFlurrys again on the way back to the hotel, which went down very well with the bottle of Hobgoblin beer I was allowed 🙂

 

I have an appointment to see Joseph back at the NHNN at 10am, so we are up, showered and having breakfast by 9am.  The Cotton Rooms is a really nice hotel, and the range of food laid out for breakfast makes choosing quite difficult.  I settle for tea, fruit juice, cereal, yoghurt and pain-au-chocolat; and then decide to have bacon, sausages, poached eggs, baked beans and hash browns.  By the time we have finished breakfast, it’s almost 9.30 and my wife is getting anxious about the time.  We dash back to our room, grab a few things, and then head off on foot to the NHNN.

We arrive at the hospital just on time, but by the time we have caught lifts and walked through a maze of corridors we are a few minutes late.  Luckily Joseph is running a few minutes late as well, so it’s not a problem.

Joseph wants to know how things have been, and my wife tells him how surprised she has been at all the changes to me other than the tremor, such as my muscle control.  I’m buzzing with it – “Wow, yes, muscle control!” I say to Joseph, “Absolutely amazing!  Considering how much laxative I have in my system, I can fart and not follow through!”.  Joseph laughs, and then looks at me.  “Would you say your behaviour is a little impulsive?” he asked.  “Yes! Absolutely!” I say.  “Yes!!!!!!!!” said my wife.  I had assumed that my state of mind was due to my elation at the success of the operation, but it evidently went a little deeper than that.  I was not just on a high, I was saying things that I wouldn’t normally say to people that I hardly knew.  My behaviour was also a tad reckless.  Joseph explained to us that this kind of behaviour can be one of the side effects of DBS, as well as of the dopamine agonists, but that there was plenty of scope for adjusting my neurostimulator to avoid it.  My device programming thus far was extremely basic because he had got a decent response without having to go any further.  He changed my settings to utilise a different contact on my electrodes.  This setting was not quite so effective at controlling my tremor, but Joseph explained that he would try reverting back to the other contacts in a few days when, hopefully, the swelling in my brain would have receded a little and the side effect would also, hopefully, have receded.

My wife was very relieved.  She hadn’t wanted to bring me back down to earth when I  was so obviously thrilled at feeling so much better, but she had felt that my behaviour was completely out of character.

My wife had never been to a West End show, so I suggested we go to see one rather than going to the Blues Bar this evening.  She is excited about going, but not sure what to go to see, so I ask Joseph for a recommendation.  “Les Miserables!” he enthused.  “It’s the best show I’ve seen.  Don’t forget your tissues though – I’ve been to see it 3 times, and cried every time”.  Okay, that was a definite maybe.  He also said that he had heard that The Woman In Black was very good as well, if a little frightening.

We set off to Fig Tree House to get some more clothes from my wife’s car, which John and Ruth had very kindly allowed her to park there until I am sent home this Friday.  We also drop in to see my mate, Gerry, in his log cabin at the bottom of the garden.  We mention going to see a show.  “Les Miserables!  Fantastic!  Don’t forget your tissues!”.  That was settled then, provided we could get tickets.

We returned to The Cotton Rooms via the theatre box office, and managed to get the best seats in the house at bargain price.   Heated a couple of ready meals up in the restaurant microwave, and tried to rest up a little before going out to the theatre.

I’m feeling much calmer now, and my wife seems a lot less stressed by my behaviour, so I assume that I am now back in character!  It’s very difficult to see from my side.  I don’t see the body language.  The only thing I had noticed was a slightly manic quality to my laugh, which my wife and my pal had not noticed!  It took my wife to point out to me that the muscle control remark that I had made to Joseph was not a remark that I would normally have made to someone I hardly knew.

Les Miserables was excellent, but neither of us cried (just as well, because we did forget our tissues), I think we were all emotioned out at that point.  We returned to the hotel, grabbing chocolate caramel McFlurrys on the way.

Charlie is going home today, now that they have sorted out a care package for him.  My wife and I have a bottle of Jameson’s for him, which he is very pleased about. “You’ve made it almost bearable to be in here” he said, shaking my hand  I’ll take that as a compliment, Charlie!

We go to see Joseph for a bit of a DBS tune-up, and he increases the voltage slightly, reining in my tremor once more.

They want my bed as well, and propose putting my wife and I up in The Cotton Rooms and then seeing me as an outpatient for the rest of the week. Sounds good to me! My pal from Brighton is visiting today, and arrives while we are waiting for the pharmacy to dispense my drugs for discharge.  Soon we are delivered boxes of paracetamol, codeine, antacids and laxatives, and a huge bottle of liquid laxative.  We decide to walk to the Hotel – it’s about a 20 minute walk and I think I can do it if we take it easy, especially since we have my pal here to help us carry our luggage.  We arrive at The Cotton Rooms, check in and take our luggage up to our room.

After some recovery time, we decide to go to the Blues Bar for a while, and head off for the underground.  My pal is quite keen to get something to eat, but I’m a man with a mission – to get a decent seat in the Blues Bar, where I won’t get my head knocked, before it gets packed – so my wife and my pal trail along behind me.  My wife is really quite concerned about me and wants me to slow down a bit, but I’m insistent that I’m fine, just dodging around the dawdling tourists!  We stay in the bar for several hours, listening to the live music and drinking pints of cola (no ice!).  We get a little something to eat in there – a couple of packets of crisps each.  I’m still really “fired up” and a bit loud but that’s only natural, isn’t it?  My pal heads off  back to Brighton, and my wife and I catch the tube back to the hotel, stopping at McDonald’s on the way to get chicken burgers and ice creams to take to our room.

I sleep well, and wake around 6am feeling incredibly good.  Blood pressure.  Pulse.  Light.  Questions.  Painkillers.  Laxatives.  Big smiles all round.  Everyone remarking on my lack of tremor.

Hospital breakfast of toast, butter, jam, tea.  Wife arrives with bacon butties for me and Charlie.

The registrar pops in to see me, wanting to know how it went last night, and saying “Yes” to my suggestion of the same again this afternoon/evening – “as long as your wife is going with you”.  I’m looking forward to it already!

I’m still feeling pretty good.  Even though my tremor is starting to creep back a little, I’m fairly “fired up” (as one of my friends put it) with the success of the operation.  I’ll see Joseph tomorrow, have a tweak here and there and all will be well.

Off to the Blues Bar again, 2 hours of amazing live blues, 3 pints of cola (no ice).  I notice my voice getting slightly slurred as I’m getting tired.  Not unintelligible, but definitely less clear. We head back to the hospital, arriving just as dinner is being served.

 

I try to persuade my wife that we could go to the  Blues Bar this evening.  After all, Joseph had suggested that we go out for a meal, and that wasn’t so different, was it?   I got plenty of negative feedback, so I said I’d ask the nurse, and if she said “No” then we wouldn’t.  Agreement on that one!

As luck would have it, the registrar called around to see me with one of the senior nurses that lunchtime.  I asked if it was permissible for me to go to the Blues Bar for a couple of hours of live music.  The nurse shook her head, and said “No” at exactly the same time as the registrar nodded emphatically and said “I don’t see why not”.  Nurse and registrar looked at each other, and then the registrar said “he’s my patient, and I say yes”.  He looked at my wife and I – “just don’t get drunk!”.

So my wife went shopping for a baseball cap while I try to snooze for a while during the visitor exclusion hour from 1pm to 2pm.  When she returned, I get myself dressed in my jeans and T-shirt, shoes and socks and with my smart new navy baseball cap covering my dressings, we took a leisurely stroll to the nearest underground station.

We arrived at the Blues Bar 20 minutes later, found a good table in the corner, and ordered drinks.  I would have had a pint of bitter, but my wife wasn’t happy about that so I had a pint of cola instead.  I’m sure if the registrar meant me not to have an alcoholic drink he would have said “soft drinks only” rather than “don’t get drunk”, but in truth I really didn’t mind.  I was high on DBS, so elated at being tremor free.  We drank our soft drinks and listened to the live music which was excellent, as usual.  My wife and I reluctantly left after our allotted 2 hours and returned to the NHNN, where dinner had just been served!

Slept well until 6am.  Blood pressure.  Pulse.  Light.  Painkillers.  Laxatives – because codeine will do that to you…

Breakfast – toast, butter, jam, tea.

Decide to distract Charlie, so tell him that he was making a lot of noise in the night, and I had recorded it for him to hear.  “Really?” he asked, as I handed the earphones to him.  I then played the Derek and Clive (Peter Cook and Dudley Moore) sketch, Nurse.  If you don’t know this one, you can find  it here – Nurse!.  He almost wet the bed laughing at that, and for the rest of our time on that ward, whenever a “certain sound” emanated from his direction, I would pop my head up and call “Nurse!”, and Charlie would chuckle away.

My wife arrives at 10am with bacon and egg muffins for me and Charlie.  Delicious!

We go to Joseph’s office, and he checks my tremor and makes some small adjustments to my neurostimulator.  The brain will be swollen where the electrodes have been inserted, and as this recedes, so the effects of stimulation change.  The tremors that have crept back since yesterday are calmed, and Joseph tells me that I can leave the hospital for a while, take a stroll, even go out to dinner.  It’s Friday today, so no more adjustments until Monday.  If I think that I need further adjustment before the weekend, I just have to wander round to Joseph’s office before 5pm.

Joseph cleaned the wounds on my head and chest, and then plastered me in sterile dressings.  I felt like a proper twit, but I think it made me more aware of the danger of infection, so that could only be a good thing.  The last thing I wanted at this point was to get an infection and then have to have all of the hardware removed.

An old friend of mine comes to visit, and we go to the cafe for a coffee and then into Queen Square to sit in the Spring sunshine.  It feels good to be drinking with a steady hand, sitting and chatting without thrusting my hands in my pockets or sitting on them to keep them still.  Got a few strange looks because of my headful of dressings, mind you.

Martha Orbach came to see us this afternoon bearing gifts!  A beautiful hand made card and a bottle of red wine 🙂  She was able to tell us about the operation from an observer’s point of view.  Even in retrospect it was reassuring.

 

Wide awake at 5.30am, still feeling emotionally fragile.  A little while later Diana, one of my favourite smiley nurses, came around to do the blood pressure, pulse, light, questions routine.  She gave me the full benefit of her dazzling smile, and said “Ian, what’s the matter?”. My face crumpled and I just broke down in tears.  The operation never worried me at all, not for a second.  This was different.  The thought of my hardware being switched on and it having no effect on my tremor was almost more than I could bear.

By the time my wife arrived, I had eaten breakfast, pulled myself together a bit, and was sitting with Joseph, the DBS specialist nurse, another nurse who was observing, and Martha Orbach who was also observing.  Originally Joseph had said that he would perform the switch on and initial programming on the ward, but then asked me if I was up to walking to his office because it would be more private.  So, we traipsed around the building for a little while and ended up in Joseph’s office, which accommodated the five of us with no room to spare.

Joseph put the device programmer transmitter over my neurostimulator implant and switched it on.  He went through each contact (there are four contacts on each electrode) changing parameters (voltage, frequency, pulse width, polarity), and observing me closely, determining which contacts were effective, and the parameters that had the desired effect.

My wife, sitting to my left, watching me intently.  Joseph sitting in front of me with his device programmer.  The observing nurse sitting to his left watching Joseph, watching me.  Martha, watching everyone, I think.

Joseph determined that there were three contacts that were responsive, and set about configuring the ones that he thought were best.  He clicked away on the programmer, occasionally asking me if I felt any tingling, how was my speech, watching my hands, making me do finger taps and hand flashes to monitor my movement.  There would be a tingling in my chin, and then it would go.  My voice would be slow and slurred, and then it would be fine.  My hands would shake as if possessed. and then be almost still.  Finally he stopped, and made me do the usual chin and nose touching exercises, and then to put my hands in my lap and relax.

Hands perfectly still.  Voice close to normal.

I looked at my wife, and she promptly burst into tears.  And then so did I.

Joseph, the other nurse and Martha all hurriedly vacated the room to give us time to compose ourselves, bless them!

My wife and I were just bawling, and then we looked at each other and a second later we were both laughing hysterically.   And then bawling again.  And then laughing hysterically.  I think that neither of us had allowed ourselves to believe that it would have such a good effect, and when it did we didn’t know how to handle it.

Back on the ward, and for the rest of the day, we were fighting our emotions.  One moment we were in tears, the next moment we were laughing.  We simply couldn’t believe how amazing the results were.

Dawn.  Still awake.  Still having my lying down workout.  Blood pressure.  Pulse.  Light.  Questions.  Painkillers.

Empty drip taken away and not replaced because I’m being a good boy and drinking plenty.  Catheter removed (yowzah!) and I’m told I can get out of bed and to walk if I feel steady enough.  I get out of bed and sit in the chair next to it.  After a little while I stand and tentatively walk to the bathroom.  No problem.  The trip back to my chair is much more confident.

My wife arrives and is pleased to see me up and about.

Various members of the DBS team call around to see me during the course of the morning.

• My neurosurgeon, wanting to know how I was feeling, how was my tremor, had I experienced any “implant effect” (changes to symptoms as a result of swelling in the brain caused by the implantation of the electrodes)?  Feeling fine, tremor much the same, no implant effect.

• Joseph, one of the specialist nurses, who made an appointment for me to have my neurostimulator switched on the next morning.  My wife and I could hardly believe it.  After all we had gone through together, we were almost there.  The end of one road, and the beginning of another – or just the end of the road?  Tomorrow morning we would find out.

This afternoon, Claude was chatting on his mobile to someone.   I was vaguely aware of his voice in the background, and noticed his change in tone from conversational to distress.   It turned out that he had been on the phone to his nephew, who was visiting his (Claude’s) wife, who was also in hospital but due to be discharged any day.  Whilst he was talking to his nephew, his wife died.  That poor old man sat in his chair at the end of the ward, obviously in terrible distress, and nobody went to him…  My wife returned from having her lunch and I told her what had happened, so she went to him, held his hands, told him how sorry we were to hear his news, and offered him any help he might require.  I got myself out of bed and joined my wife at Claude’s bedside.  Chatting away to him and trying to distract him from his grief, we discovered that he had been a stonemason by trade, but also a semi-professional motorcycle racer in the 50’s and 60’s (known as Charlie Mates, not Claude Mates, because “Claude’s a bit posh for that sort of thing”).  So I Googled him and found a website with loads of information about him classic50racingclub.co.uk/charlie-mates, and also photographs of him racing these classic motorcycles classic50racingclub.co.uk/chas-mates-gallery.   He told us funny stories about his life, and forgot about his troubles for a little while.  I made sure that all the nurses knew who he was, and they provided more distraction, for which we were all grateful!  Banter and general abuse continued between us.

I’m pretty tired by now; it’s been over 30 hours since I woke up from my operation and I still haven’t slept a wink.  I’m feeling very emotional.  Not sure if it’s a consequence of the operation, or the general anaesthetic, or thinking about Charlie’s plight, or the fact that I’m scared beyond belief about my device being switched on tomorrow.  What if it doesn’t work?

I try to sleep, eyes filled with tears, running down my cheeks, telling myself (unsuccessfully) to get a grip.

I sleep.  And wake.  And sleep.  And wake….

Awake at 6am.  Blood pressure.  Pulse.  Light in the eyes.  Questions.

No breakfast.

Showered and changed.  Nice clean gown to wear, open at the back.  Another one to wear over the top so that the nurses are spared the view of my hairy arse.  Compression stockings put on by one of the nurses.

It’s 8.30am.  Porters arrive to take me to the operating theatre, and I’m wheeled into a room full of busy people, my wife by my side.

I see Ludvic Zrinzo, my neurosurgeon, who tells me that they will be performing both operations today because the anaesthetist felt that it was an unnecessary risk for me to have two general anaesthetics.  So,  that has taken the decision out of my  hands.  I’m glad about that, and so is my wife.

I see Professor Marwan Hariz, the head of the DBS team at the NHNN, and he introduces himself, and another neurosurgeon from South Africa who is going to be observing today.

I see Martha Orbach.  Smile.  Wave.

I see Jin, preparing the box that will be screwed onto my head to facilitate the accurate placement of the electrodes within my brain.

I see the anaesthetist.

Everyone is busy, everyone performing their assigned tasks.  My wife kisses me goodbye, and I tell her I’ll see her later.  Canulas are inserted, there’s a mask on my face.  Relax.  Breathe.  Count backwards.  Oblivion.

A minute passes and I’m awake again, but the clock in front of me tells me its almost 2.30pm.

My memory is blurred.  I know there were people there, talking to me, making sure I was okay, but that’s all.  I recall seeing my wife coming towards me, and entertaining the thought of a practical joke… I looked blankly at her, and was just about to say “Who are you?” when I saw the look on her face and decided against it.  I think she would have fainted.  I smiled  at her and she smiled back.  All is well.

I’m returned to the ward.  Claude waves to me.  Nurses bustling.  Blood pressure.  Pulse.  Light in the eyes.  Questions.

I feel fine.  No pain.  No sensation indicating the invasion of my body, the alien implants..

Time passes in a blur.  Dinner arrives and I scoff the lot.  Can’t really remember what I ordered, but I know it wasn’t wasted.

I’m offered pain relief, and hesitate.  I’m not in pain, but aware that I may be before too long.  I don’t want morphine, but might want paracetamol later.  I agree with the nurse that I won’t take anything at the moment, but can call her at any time should I change my mind.

A couple of hours pass, and I change my mind.  Paracetamol and codeine are administered.

Visiting time over, the ward now quiet, lights are dimmed.  I’m wide awake.  No chance of sleep right now.  I sit up in bed, reading the Metro online,  checking my emails, posting on Facebook, stretching my legs, circling my ankles, having myself a lying down workout, mindful of the danger of thrombosis (no blood thinning medications for brain surgery) and determined to minimise my risk.

Wake. Blood pressure. Pulse. Light in my eyes. Questions.

Breakfast: weetabix swimming in milk, toast with butter and jam, and a cup of tea.

Glad I have a bed at the end of the ward by the window. Not because of the view of the hospital roof and the plumbing for the air conditioning, but because I was able to open the window and have a nice cool draught of fresh air.  Hospitals always seem so stiflingly hot, and this is no exception.

Assessing my fellow inmates…  There are six beds in my room.  Next to me there is a young Maltese lad who appears to had a tumour removed. His bed is surrounded by family from first thing in the morning until well after visiting time at night.  Lots and lots of very loud jabbering in Maltese, and curtains pulled around shutting the rest of the world out. Next to the Maltesers is an Indian gentleman – very quiet, no idea what his operation was.  Opposite him was a bearded white bloke with half his head shaved and a nice big surgical dressing where his hair used to be.  He seemed cheerful enough, but didn’t really seem to know what was going on, and was watched over 24 hours a day by a nurse stationed at his bedside.  Next to him (and opposite the Maltesers) was another Indian gentleman who was having MRI scans to try to determine why he was unable to regulate his body temperature. Finally, next to the second Indian gentleman, and opposite me, was an old boy of 86 who had had an operation on the top of his spine.  The whiteboard by his bed said his name was Claude.  Claude was a cantankerous old bugger, pulling faces and mouthing remarks to the retreating backs of nurses and catering staff that didn’t have a ready smile on their faces.  He made me laugh though, and pretty soon we were exchanging irreverent banter and rude gestures across the ward.

Wife arrives with plenty of goodies to supplement the hospital food, which is actually not bad at all.  I ordered an all day breakfast for lunch, and fish pie for dinner.  Both meals good enough to eat.  Bonus!

Visitors…

• The registrar, checking to see that I had actually turned up, I think, and telling me that I was first on the list the next morning.

• The anaesthetist, going through the procedure with me, telling me where they would be sticking their tubes, catheters, canulas.  Warning me that he would probably knock at least one crown or bridge off, and expressing concern over my acid reflux and possible complications.

• The neurosurgeon, Ludvic Zrinzo, telling me that his afternoon slot was now vacant, and that I could have both stages of the operation done one after another.  He asked me if I would be prepared to take part in a little research following the first stage of the procedure (implantation of the two electrodes into the  sub thalamic nucleus of the brain) and before the second stage (implantation of the neurostimulator and connection to the electrodes) which would mean not performing the second part of the operation immediately, but a day or two later.  I agreed to this with the proviso that the anaesthetist was happy for me to have two separate operations, given his concern over my acid reflux.  “No problem, I’ll speak to him, see you in the morning”.

• Another DBS team member, asking if I would allow an artist to watch my operation tomorrow, with a view to producing an animated film about Parkinson’s Disease and Deep Brain Stimulation. Come one, come all!  What the heck, of course I don’t mind!  So I was introduced to  Martha Orbach, and my wife and I chatted to her for a while and I managed to make her laugh by telling her that the operation was a complete no-brainer as far as I was concerned.  We discussed the symptoms of the disease, and she learnt quite a lot about how skilful we are at concealing them from others – even my wife found out one or two things that I had managed to conceal from her.  It transpired that she had never seen the operation before, so I emailed her a couple of YouTube videos to watch tonight:  one showing my neurosurgeon, Ludvic Zrinzo, performing the “awake” operation – http://youtu.be/1_njABHP1sU (I have watched this one so many times, I feel that I know him personally.  Having now met him, I can confirm that he is exactly as he appears to be in this video – a kind and caring man), and another showing the amazing effects of successful DBS – http://youtu.be/uBh2LxTW0s0.

Visitors gone.  Lights out.  Eyelids heavy.  Sleep.

Today’s the day…

We have to wait until we are called by the hospital to confirm that there is a bed available for me, so we sit around anxiously until the phone rings just after 11am, and I am told to report to the Bernard Sunley ward and asked for my ETA.  My wife and I are travelling down by car to Fig Tree House – the B&B in Hither Green that I used to stay in some years before when I was working in London.  She will be staying there while I am in hospital, travelling into central London by train each day.  John and Ruth, the owners of Fig Tree House, very kindly allowed her to stay there even though they were having some structural alterations and were officially closed for three months.  We arrived just before 4pm, and I helped my wife get her case into her room, had a cup of tea and a chat with John and Ruth, and visited my old pal, Gerry, in his log cabin at the bottom of the garden.  Then, we grabbed the two small “cabin baggage” sized cases containing my hospital supplies (pyjamas, dressing gown, change of clothes, wash bag, iPad and charger, biscuits, fruit juice, sweets and snacks, etc.) and caught the train to Charing Cross.

Arriving at the hospital, I was quickly shown to my allocated bed and tagged with my name and date of birth.  Blood pressure.  Pulse.  Shine a light in each eye.  Then there was the first round of the (soon to be familiar) questions: Do you know where you are?  What’s your date of birth?  What’s todays date?

I showered, changed into my pyjamas, and got into bed.

I’m not worried about the operation.  Not even slightly concerned.  My only worry is that I survive the operation, and it doesn’t work!  So much rides on the success of the operation that I cannot even contemplate its failure.

I’m getting old now, and my memory isn’t as great as it used to be.  I think I have the sequence of events nailed, and I’m sure it all started in 1995..

My wife was pregnant with our first child, and while she was having her crumbling teeth repaired free of charge, I visited my dentist, who recommended some routine maintenance for me as well.  I had a large amount of dental work performed by my dentist in Brighton.  Most of my old amalgam fillings were replaced, because they were either cracked or were showing signs of wear, and some crumbling teeth were shored up with a combination of metal-backed porcelain crowns and a couple of gold crowns where there was insufficient room to accommodate the larger porcelain ones.  I believe that it was this dental work that triggered my Parkinson’s Disease which then remained undiagnosed (and misdiagnosed) for over 15 years.

My daughter was born in August 1995, and I clearly remember my wife returning from the supermarket having left me to look after our baby for an hour or so.  As she walked into the house, she wrinkled her nose and said “she needs her nappy changing, can’t you smell that?”.  I couldn’t, and my wife used to pull my leg about my convenient lack of sense of smell for years afterwards.  I had had a nasty cold a couple of months previously which ended up with a sinus infection; I knew that I had lost my sense of smell at that time, and assumed it would eventually return.  It did eventually return for a year or two, but it was seriously diminished.  My sense of smell got weaker and weaker until it disappeared almost entirely.  Occasionally I would catch a whiff of a particularly strong odour, but to all intents and purposes my sense of smell was gone.  I later found out that this is commonly one of the early signs of Parkinson’s Disease.

I was driving to work early one winter morning, when I hit a patch of black ice whilst overtaking another car – end result was that the rear of my car hit the other car, and we both pulled over to exchange insurance details.  This done, I continued on my journey to work.  When I got in to the office, I was relating this tale to one of my colleagues, and took out the notebook in which I had written the other driver’s details.  “Christ!” he said, looking at my handwriting, “You were shaking!”.  I dismissed this at the time, just saying that I was shaken up by the accident, although I had noticed my hands were shaking uncontrollably when I had been making the notes immediately following the collision.

It was in March 1997, I was in Brighton, having a pint in The Hand In Hand with a friend.  I had a birthday card to write and post, and I recall feeling quite flustered and hyper – I had just driven from Gatwick airport in the usual mad rush hour traffic on the A23.  I borrowed a pen to write the birthday card, and then found that I was struggling to write because my hand was shaking.  I somehow managed to write inside and sign the card, popped it in the envelope, addressed it to post on my way home, and put the tremor to the back of my mind.

I accepted a short term contract in Amsterdam, and while I was working in their offices there, I began to smell a strange chemical smell.  Nobody else could smell it, so it had to be my sense of smell that was deceiving me.  I also noticed that I had a mild, but persistent, tremor in both of my hands.  When my contract finished in the early part of 1997, I made an appointment to see my GP, who referred me to the Neurology department at Southampton General Hospital.

The neurologists that examined me at Southampton General made me do all of the (now familiar) tests for Parkinson’s Disease – finger taps, touching my nose and my chin, watching me walk, checking my arm swing, etc.  When they had completed their examination, one of them said to me “well, it’s definitely not Parkinson’s, and we don’t think it’s MS.  We’ll be writing to your GP”.  You could have knocked me down with a feather – I had never really thought about what the diagnosis would be, and these two big, scary diseases had never entered my mind.  In due course, my doctor received a diagnosis from the hospital, and I was summoned!  “Benign tremor” he pronounced.  “What’s that, then?” I enquired.  “Well, ” he said “you have a tremor, but we don’t know why”.  Fantastic!  He sent me on my way with a prescription for beta blockers which, he said, may help to calm the tremor.  They had no effect on me, and I discontinued them after a month or two.

Knowing nothing about Multiple Sclerosis or Parkinson’s Disease, apart from they they were incurable and scary sounding, I turned to the internet and researched the symptoms of these conditions to see why the neurologists had considered them, and why they had dismissed them in favour of (what I considered to be) a non-diagnosis.  It was during this research that I came across a number of accounts of people being diagnosed with MS and Parkinson’s, and it turning out to be mercury poisoning from their dental amalgam fillings.  So I started looking at the symptoms of mercury, which are many and varied, and began ticking off all of the symptoms that I was suffering (even though I had dismissed many of them as “just getting old”), and discovered that I was ticking almost all of the boxes.  By  this time I was starting to feel tremor in my right leg and foot – enough to make driving my car, an Alfa Romeo with a very light throttle, a bit of a challenge.  I decided to go to see a mercury free dentist for an opinion.  I found that a chap called Jack Levenson was the mercury poisoning guru, being the founder of the British Association for Mercury Free Dentistry, and that many mercury free dentists up and down the country would only carry out amalgam removal on referral from him.  Obviously this was the man to see!  I drove to London to see Jack Levenson at the Brompton Dental Clinic in Earls Court.  Following an hour long consultation during which I was tested for sensitivity to various dental compounds and my fillings mapped by testing the electrical current coming from each individual tooth, Jack declared that my mouth was “like a battery” and that I had “classic” signs of mercury poisoning.  I think, in hindsight, that if I hadn’t already been convinced that my fillings were causing my problems, that I would have dismissed Jack Levenson as a charlatan who was making money from preying on the fears of sick people, particularly as his fee was not inconsiderable, some of the testing that he performed did not strike me as very scientific and the dental surgeon’s quotation for removal of all amalgam fillings and metal crowns and replacement with composite fillings and ceramic crowns was in excess of £6,000, but in the circumstances I made a series of appointments to have the necessary dental work done.

There are those that are adamant that mercury cannot leech from dental amalgam fillings, that people who claim that their fillings are making them sick are imbeciles, that people who recover from their illnesses once amalgam fillings are removed and chelation protocols followed are simply feeling the placebo effect and would have got better anyway.  All I can say is that, with the knowledge that it would take many months following amalgam removal for me to begin to feel any benefit, I was not expecting to feel any changes in my symptoms – if anything, I was expecting an increase in symptoms from increased exposure to mercury vapour when the amalgams were drilled out.  I had two dental appointments on subsequent days.  During the first appointment, my dentist removed one of the gold crowns and a huge amalgam filling underneath the crown.  The next day I was driving up the M3 for my next appointment, when I suddenly became aware that I had completely stopped shaking.  Only for a couple of minutes, but this was the first time that I had completely stopped shaking for many months.  Following the completion of all of the dental work and some pretty rudimentary chelation, the tremor in my leg completely disappeared, the tremor in my hands reduced by about 50% and my bank balance reduced by about 80% 🙂

 

I just came across this blog on www.parkinsons.org.uk written by someone who is approaching surgery – debversusparkinsons.  Lots of good information on there that you won’t find on here, because I don’t currently take any Parkinson’s medication…