I self-medicated (cannabis and alcohol) last night, just before hitting the sack. I went off to sleep quickly and slept through until 6.30am. I actually got up at just after 8am, because I dozed on and off. I feel much better and more rested than yesterday, although I’m quite stiff and aching – I assume from all the walking I did on Tuesday.
Downstairs. Tea. Nutriblast. Assess. Tremor has crept back significantly into my left leg, less significantly into my right arm. No evidence of dyskinesia. Dystonia bearable. Balance is a little dodgy this morning, and my voice still seems a little indistinct. Energy absent. Motivation appears to be slightly improved, although I have yet to do any of the items on my list today:
Clean the bathroom – my wife made a start on this before she left for work this morning, so just need to clean the bath, wash the floor and empty the rubbish bin. I have actually brought the rubbish bin downstairs to empty it, I just haven’t emptied it yet!
More weeding at the allotment
I make a start on the bathroom just as my wife returns from work early. I like to have actually done something by the time she returns, so that’s not good. I finish the bathroom and vacuum our bedroom, the landing and stairs. 2 items crossed off the list – it could be worse!
I’m feeling completely exhausted. I was on the verge of falling asleep again this afternoon. I felt a little more motivated this morning, but have no motivation at all this afternoon. The tremor in my left leg is starting to get to me as well. Balance and walking aren’t great, and my voice is definitely getting softer and huskier. Settings will be changed tomorrow morning!
We go to North Walsham to collect a new duvet cover from Roy’s, and to do some food shopping at Lidl. Then it’s home, dinner and an early night…
I had a lousy night. I couldn’t get to sleep, and just lay there wide awake for over 2 and a half hours. I wasn’t in any discomfort. Had no tremor to speak of. Just wasn’t able to go to sleep. When I did eventually drop off, I woke a number of times so felt as if I’d been awake for most of the night. On the plus side, I didn’t thrash around or shout out in my sleep! I didn’t get up until gone 8am.
I notice that tremor has crept back slightly in my left leg, and the merest suggestion of dyskinesia in my right arm. So much better than prior to yesterday’s tune-up, though! I’m exhausted after yesterday’s travelling and last night’s lack of sleep, and come lunchtime I’m fighting to keep my eyes open. I resist the temptation to have a quick 40 winks – if I sleep now, I’m worried that I won’t sleep tonight. I don’t know if my energy or motivation has been positively affected just yet – it’s difficult to know, when I am feeling so fatigued in any case.
I now have a complete new set of settings – Group ‘A’ on my remote control. I am currently receiving 1.5v on my left side and 2.5v on my right side, but utilising a different set of contacts on the electrodes than those in Group ‘B’. Group ‘B’ settings are my previous settings, in case I need to revert to them at some stage. I’m not going to fiddle with any settings for at least a couple of days, let everything settle down again and then see where we are at. It’s a major relief to have almost eliminated the dyskinesia I was suffering, and having the tremor more under control is most welcome as well. Dystonia is still nagging at my right foot, but it is manageable. My balance seems a little better today, although my voice sounds a little indistinct (to me). Some of this may be due to my current tiredness.
We are off to the NHNN today for a bit of device tweaking. I’m awake at 6am, but snooze (I switch my neurostimulator on to control the tremor) until the alarm goes off at 7.30am.
My wife makes the tea and coffee and then takes the dog to Hevingham where she will stay with her youngest son, his girlfriend and their 2 dogs until tomorrow. I make sure we have all of the essentials for the trip: train tickets, sandwiches, phones, phone chargers and iPads.
We arrive at the station with literally seconds to spare, walking onto the platform just as the train draws up. The journey passes quickly, and before long we are in Queen Square for my 2pm appointment.
Joseph listens to what we have to say as we report on settings, effects and side effects. Then he is busy with his device programmer. I alternate between uncontrollable shaking and an almost unnatural calm as he strives to find the most effective settings for me. Eventually he appears satisfied, and checks on my walking and voice to ensure that they haven’t been adversely affected. We are sent away for an hour to see how the new settings settle in, and spend our time in the cafe having coffee and then walking around Queen Square in the sunshine. We report back. No further adjustment is considered necessary, and Joseph gives me a little more adjustment to play with, should I need to do so (0.6v either side of the settings, rather than 0.4v as previously) and also allows me to fine tune adjustments in 0.05v steps, rather than 0.1v steps. All in all, a successful visit.
We depart the NHNN and decide to walk to the Blues Bar to while away a couple of hours until we catch the train home. It’s only a mile away and we have over an hour to get there before doors open, but it’s a major struggle for me. We sit and rest for a while. On arrival we bag our favourite table and I revitalise myself with a pint of Adnams Ghost Ship. A couple of pints later we make our way back to Liverpool Street station and board the train back to Norwich.
Symptoms: tremor – virtually none; dyskinesia – virtually none; dystonia – virtually none; balance – fair to middling; energy and motivation – yet to be determined.
We arrive home at 11.30pm and get ourselves straight off to bed. This time I’m leaving my device switched on to see if the “thrashing around” side effect has been sorted out as well.
Slept right through until 7.15am, which is amazing! I’m going to Brundall with my wife this morning to collect some seat cushions from a boat – she is going to make new covers for them, and also replace some of the foam within. My wife takes the dog for a quick walk while I sit and drink more tea than is advisable just before a 1 hour trip in the car! Sure enough, my wife has to pull over half way and wait for me while I go for a pee in a field. I manage to give my head a good clout on an overhanging branch while I’m negotiating the ditch and hedge that surrounds the field, so I’m not overly happy about that!
Symptoms seem reasonably well managed this morning – pretty much as they were yesterday. We collect the seat cushions and I almost topple into the water when I lose my balance for a second. I managed to grab hold of something to arrest my fall, so I’m okay. My wife doesn’t notice, so I get away with it (until she reads this blog, and then she’ll tell me off for not telling her).
I’m wishing the day away. Tomorrow we are going back to the NHNN to see Joseph and have my device adjusted. I am really hoping that he can do something to alleviate the dyskinesia problem that I have been having. Anything else will be a bonus.
A couple of stops on the way back home to look for picture frames (we buy one) and stock up on beer (we buy more than one). My wife drops me off at home and disappears off to do another job up the road on the Gunton estate, leaving me to take the dog for her afternoon walk.
We have an early dinner when my wife returns, and then we sit with my wife’s copious notes (and my blog) and make sure that we have fully documented all of the settings that I have used on my device (along with the effects and side effects) since I last visited Joseph, so that we can give him all of this data to reference when re-programming me tomorrow!
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 definitely overdid it yesterday. I had a moderately good night, although I was woken up many times by my wife (who did not have a good night) and got up around 8am. My lower back is aching like a good ‘un from all of the stooping and weeding at the allotment. My dyskinesia (right arm and leg) is really quite severe this morning, as is my tremor (both sides). Dystonia in my right foot is about the same as yesterday. So is my balance. Motivation and energy at a bare minimum.
I take the dog for a walk (because she nags me to) and then return home to sit and contemplate my belly button. The only thing I have on my list today is to vote in the EU Referendum – don’t ask, I’m not telling.
Lunchtime, and I’m still no further forward. I’ll wait until my wife gets home and then we can go and vote together. I self-medicate (cannabis), put the dishwasher on and then sit and search online (eBay and Gumtree) for a replacement fridge for our boat – the existing one has given up the ghost. It still makes all of the right noises and flattens the battery, but it no longer gets cold.
My wife arrives home from work early, and we go to North Walsham to do some food shopping. I am having trouble getting to my feet at the moment – a combination of a lack of energy and a bad back – and then when I do get myself vertical I’m struggling to keep my balance. Nonetheless, I manage to go shopping and upon our return home decide to take the dog for her afternoon walk, while I’m still standing!
We go to vote while dinner is in the oven. I don’t think I’ve seen this many people at a polling station in years!
Dinner. Telly. Beer (me). Coffee (Decaf – for my wife). Bed. Let’s hope we both have a better night’s sleep!
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.
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.
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!
Do a little weeding down at the allotment, provided the weather holds out.
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!
Get photos off my digital camera onto my laptop and post on Instagram for my wife’s business
Sharpen the very blunt Dutch hoe that I purchased last week
Shave (don’t laugh, it’s not as easy as it sounds)
Clean the bathroom
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.
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!
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.