My wife is going back to work this morning, so I am going to take the opportunity to shoot a couple of pieces to camera while I have the house to myself. I’m meeting with a friend of a friend this afternoon over at The Vernon Arms to discuss Parkinson’s Disease and Deep Brain Stimulation. “How exciting!”, I hear you cry. This means that I have almost 4 hours in which to walk the dog, set up the camera and microphone, and actually shoot 2 short pieces to camera, each of which is less than 10 seconds long.
It’s a beautiful Summer morning, and it’s perfect for dog walking. With that done and Popmaster listened to (and participated in – not a good scoring day for me today) I have 3 hours left – loads of time!
I have a lot of tremor today, in both sides, but mainly in my right arm and left leg. Dyskinesia seems a little better this morning (again), I may turn the voltage a notch on the right tomorrow if it stays away. In the meantime, I self-medicate (cannabis) so that I can do the necessary camera work without appearing to be shaking.
By the time I’m ready to step in front of the camera, I have 20 minutes left. Still possible! A frantic 15 minutes ensues, with many takes and many very rude words each time I loused it up. Happy with my efforts, I am quickly putting stuff away before leaving the house when I notice that my radio microphone was set to “mute”, so I have made a flaming silent movie! What a berk!
We spend a very pleasant 90 minutes having a couple of lunchtime beers (haven’t done that for a very long time) and a good old chinwag about our symptoms, diagnosis, medication and how Deep Brain Stimulation might help him improve his quality of life. I switched my device off for a minute or two to show him how DBS calms my tremor – very glad to switch it back on!
Back home, I manage to get the shots that I got this morning, but this time with sound.
My wife returns, we have dinner, and then I self-medicate (cannabis) because my tremor is bothering me again.
Awake early (5am) with dyskinesia again this morning – not as bad as it was yesterday, though, and I get back to sleep for another couple of hours.
My wife is going shopping for a suitcase in Norwich today, and I’m going to do some more work on the videos for my YouTube channel. I will probably shoot some footage while I have the house to myself – I can’t do pieces to camera while I’m being watched. I hate doing it in the first place, because I am, basically, camera shy. I hate the look of myself on video, and I hate the sound of my voice even more. There’s nothing for it, though, because if I don’t do it then nobody will. Most of my time is taken up with preparation: the script takes me ages to write and transfer to the teleprompter app on my iPad; I position the camera so that can I get the shots that I want, and then make sure that everything in the shot is neat and tidy – nothing worse than going to all of the trouble of filming a shot and getting it onto the computer only to notice the crumpled Lidl bag in the corner of the room (yes, it did happen!); I position the iPad on a stand behind the camera so that (hopefully) I will appear to be looking at the camera while I’m reading the script from the teleprompter; make sure the lighting is right; set up the radio microphone; make sure the dog is out of the way; vacuum downstairs; plan the shots and make sure that the props that I require are close to hand. By the time I’m ready to roll, it’s after 2pm! Action!
It’s coming up for 6pm by the time I’ve shot all of the footage that I had planned and start to import it to my MacBook. My symptoms today haven’t really interfered with my filming today, although I have done a number of re-takes when I noticed the tremor in my head or my hands. Tremor hasn’t been quite so bad as it was yesterday, but it’s still significant, as is my dystonia. The dyskinesia seems to have abated a little, which is a big relief – I really don’t like it at all. My balance isn’t as bad as yesterday, and so my walking seems a little better (less stilted) today. My mood continues to be fairly positive, and I am getting things done. I have a little more energy today, too, although I’m feeling pretty bushed now (9pm).
Dyskinesia wakes me up at 5am, and I struggle to get back to sleep again. I wake up time and time again. I have some tremor in my left leg, and some mid/lower back discomfort, which I’m pretty sure is settings related. I felt quite positive about my Group “A” settings yesterday, but they are definitely not as good as they should be this morning. When I actually get up, it’s clear that I will have to change my settings again, sooner rather than later! I turn down the voltage by 2 notches on my right hand side (because the dyskinesia is on my right hand side), and it does reduce it a tad. I’m now receiving 1.7v on the left and 1.9v on the right.
The voltage reduction makes itself known in a number of ways other than a reduction in dyskinesia… Tremor on my right side, particularly my arm, is quite strong, and dystonia in my right foot is really bloody uncomfortable. My balance, which I thought was reasonably good at the moment, has also declined sharply, and I repeatedly catch myself on the verge of falling. My voice is stronger and clearer than it has been for a while, and that’s very welcome. Both of my arms are feeling weak and aching.
My wife and I go to North Walsham to get some food shopping. Exercise often affects the symptoms of Parkinson’s Disease, so I am hoping that I can walk some of them off. We walk around Lidl, and nothing has changed. When we get home, I rope in my wife to help me capture some footage for another (non-DBS) video I’m planning for my Youtube channel about the health benefits of kefir, a pro-biotic fermented milk product that I produce.
Video footage captured and imported to my MacBook, we take the dog for a walk around the village and distribute some leaflets promoting my wife’s business – 2 birds, 1 stone! We are only out for about 30 minutes, but it takes its toll and I’m sweating like a very sweaty thing, and in need of a sit-down. If I was expecting the exercise to reduce the tremors, then I’m afraid I’m extremely disappointed – if anything, they are worse. I’m going to hang on in there until tomorrow lunchtime before making any more changes to my settings though – it really does take 24 hours for things to settle down properly after a change.
I knock up a rough edit of the video, and it’s looking good. Voiceover, sub-titles and music are on the agenda for tomorrow.
I’m going to change my settings today. I mean totally change them, not just tweak the voltages. I still have quite a lot of tremor on my right side, and my left leg has been shaking away for a while now. When I was re-programmed on 3rd of August, Maricel gave me 2 completely new sets of settings. I originally left the NHNN with Group “A” settings in force, but changed them over to Group “B” fairly quickly because of side effects. I have now been enjoying Group “B” settings for about 3 weeks, and have worked my way up the voltage scale until I hit the maximum (on the left) and aggravated the dyskinesia (on the right). Time to hit Group “A” again!
My wife takes the dog for a good long walk, and I change my device over to Group “A” settings, 1.7v on the left side and 2.0v on the right, just as they were when I left the hospital. I’ll wait for the dyskinesia to attack before I change anything.
We drive to The Range on Longwater Retail Park, just outside Norwich, this afternoon. We are in need of picture frames, and we heard that they have a big selection there. They do have a big selection, but nothing that is exactly what we are looking for, so we opt for buying the frames slightly oversize and then custom making picture mounts the size that we require. By the time we have made our selection it is almost 4pm and the staff are virtually chucking us out of the door in their eagerness to close the store and go home (and I don’t blame them!).
Home. Walk the dog. Dinner (leftovers from yesterday’s barbecue).
My wife busies herself cutting picture mounts. I collapse in a heap on the sofa.
The dreaded dyskinesia hasn’t reared it’s ugly head as yet, but tremor is still significant in my left foot and is there also (to a lesser degree) in my right arm. My right arm feels very weak. Dystonia is slightly more prevalent in my right foot – still bearable, though. On the plus side, my wife says I appear much happier this afternoon, and my voice doesn’t seem so weak!
As soon as I wake up I know that I have more dyskinesia than I had yesterday. I also seem to be shaking a little less, so let’s see how the day unfolds.
We are having a barbecue in the back garden this afternoon – it’s a family birthday party for my wife’s youngest son, who turned 26 this week. The weather forecast is pretty grim – after the fairly fabulous week we have had, the Met Office have issued a weather warning for today, and it’s supposed to rain heavily from mid-afternoon onwards. We plan to cook and eat indoors in the event of a cloudburst!
I’m conserving my energy for later, because barbecue cooking is a man’s job, so I sit and take it easy while my wife makes a green salad, potato salad, coleslaw, millionaire’s shortbread and flapjack. My tremor rears its ugly head again, and I briefly consider changing my settings over to Group “A” from Group “B”. I decide to stick with Group “B” (at least for today) because I cannot accurately predict what will happen to my symptoms when I switch to Group “A”. The last thing I need at the moment is for my dyskinesia to go through the roof when I’m barbecuing food. All of my other symptoms appear fairly stable at the moment, so it makes sense not to rock the boat. My dyskinesia is marginally worse than yesterday, but I can cope with it and it doesn’t seem to be getting any more pronounced as the day goes by. The flare up of tremor in my right arm has subsided and, although it’s still there (just beneath the surface), I feel I can cope with it.
Our guests arrive, and the promised downpour hasn’t materialised so I light the barbecue and smoke the back garden out. The party is a great success and the afternoon passes in a flash. I manage to cook sausages, burgers and several varieties of marinated chicken without burning anything beyond recognition or poisoning anyone with undercooked offerings. Even the dog approved (because I dropped a burger on the ground). By the time we have cleared up and everybody has gone home, it’s almost 9pm and I’m absolutely cream crackered.
I will try not to overdo it again today. I think I detected a smidgeon more dyskinesia when I woke up this morning. My tremor didn’t seem to be improved at all, though – I’m still shaking too much. I’m fairly happy (within reason) to accept an increase in one symptom as a trade-off for a decrease in a more troublesome symptom. I get a little pissed-off when I get the increase with no corresponding decrease! I can tolerate the majority of my Parkinson’s disease symptoms: poor balance is a nuisance, but (up to now) I have had remarkably few falls, and mostly I catch myself with ease; a weak voice can be a pain, especially when I’m repeating myself for the umpteenth time, but it’s not the end of the world; dystonia in my foot is uncomfortable, but (providing it doesn’t get any worse) it’s bearable; muscle weakness and stiffness can be painful and frustrating, but I’m managing (so far); the poor levels of energy and motivation have (thankfully) improved, but when they were at their lowest I was still getting by; bradykinesia is more frustrating for other people than it is for me. Luckily I haven’t suffered with freezing of movement (yet). Tremor drives me to distraction, particularly in my right arm and hand, because it makes it difficult or impossible for me to function normally – make a cup of tea and drink it, pour a beer, prepare (and eat) food, sign my name, type an email, relax… Dyskinesia is another symptom (of my DBS surgery, not of Parkinson’s Disease) that I find difficult to tolerate, because it robs me of control, and draws attention to me. At the moment my dyskinesia is tolerable, but my tremor is becoming intolerable at times. So the dilemma is whether or not I increase the voltage to my right side on my device, to try to moderate the tremor, and risk the dyskinesia becoming intolerable.
This afternoon I increase the right side voltage on my neurostimulator by another 0.05v (still 1.75 on the left, now 2.2v on the right). If my dyskinesia increases to a point where I can’t put up with it, then I’ll try the Group “A” settings and see if they will give me a better tremor/dyskinesia balance. In the meantime, self-medication is calling!
Well, this is the 3rd day in a row that I have been experiencing increased tremor on my right hand side. I think it’s because I have been overdoing it (which I did again, yesterday) but I can’t be sure. I’ll try not to do anything too taxing today and see if it settles down a little. If it doesn’t, then I think that maybe more juice is required, and I’ll increase the voltage a little on my right hand side.
I take the dog for her first walk of the day, and then sit quietly in the lounge reading The Metro online, checking my email, and reviewing my YouTube channel – I’m impressed to see that my DBS Video has had over 170 views in just two days, and I have had a good number of positive comments from people who have viewed it. Not a bad start for something that is so niche. It will spur me on to make some more, so that will keep me occupied for a little while!
Lunchtime comes around, and my tremor is getting to me, making it a bit of a trial to type or use my trackpad. I increase the voltage by 0.05v on the right (now 1.75v on the left and 2.15v on the right). I don’t get any sensation of additional stimulation, but I’ll leave it for 24 hours and see what happens – my biggest fear is that I provoke more dyskinesia, but so far, so good.
This afternoon I combine taking the dog for a walk with visiting the allotment to dig up a few spuds. I only seemed to have been digging for a few minutes (10 minutes max) when I felt exhausted, so I picked up the few spuds that I had unearthed and headed for home.
I follow dinner with a quiet sit-down, and some self-medication (alcohol and cannabis). Feeling a little better now!
I had another day of increased tremor, poor balance, weak speech, and aching muscles. I feel really fatigued even though I had another good night of sleep, and I think it must be because I’ve overdone it (although I really and truly haven’t been doing that much). Dystonia in my right foot is playing up – perhaps that’s another reason for my poor balance today.
My wife is spending another day trying to get the conservatory sorted out. We are having a family barbecue at the weekend, and she wants everything to be spick and span when everyone descends upon us. For my part, I need to clean and repair my barbecue so that it’s fit for use this weekend. No pressure there, then! Prior to doing that, I walk the dog and then go into North Walsham to go to the bank, and to get a 21st birthday card for my daughter (it’s her birthday on 31st August).
On my return, I grab a bottle of cream cleaner and a pan scrubber and set about giving the barbecue a damn good clean (well, it was a kind of mediocre clean, really, but the best I could manage). Then I got inventive – the central column of the barbecue is secured to the barbecue stand by a threaded bar, which has corroded beyond use. I managed to improvise with a coach bolt and a couple of big washers, and the copper conductor from some electrical cable that I found in one of the sacks of rubbish that is waiting to go to the tip! I’m happy that it will (should) stand up to being used this weekend! I take the dog for her afternoon walk.
My wife, of course, has worked 10 times harder than me and has washed the conservatory frame inside and out, washed the windows inside and out, cleaned out the guttering and washed the roof inside and out. I really don’t know where she gets her energy from, but I’m truly grateful to her for all of her hard work. I wish I had the energy to help her more.
After dinner, a beer is in order to assist with muscle relaxation. Self-medication with cannabis is also on the cards. I’ve probably gone and overdone it again – tomorrow will tell.
When I wake up this morning I have the usual tremor in my left leg – nothing of any note in my other limbs. Generally speaking, I’m feeling pretty good. By the time I’m dressed and downstairs with a cup of tea in my hands it’s rather a different matter. One minute my tremor is under control, the next I have a full force shake going on in my right arm, and a mild shake and increased dystonia in my right leg/foot. I can bring it back under control by initiating movement and applying force of will, but it’s a bit of a nuisance. Conversely, there’s no sign of the dyskinesia which was becoming a nuisance yesterday. It’s almost like my neurostimulator is switched off (it isn’t – I turned it off to check if it made a difference, and it most certainly did!), even my wife asked “what’s going on with your tremor this morning?”, so it wasn’t my imagination. Perhaps it’s a result of increased activity over the last couple of days… I won’t fiddle around with my settings just yet, although I’m very tempted!
It’s my wife’s youngest son’s birthday today and we are going over to have dinner with him and his girlfriend this evening. My wife is going shopping in Norwich for a new suitcase this afternoon – we are expecting a grocery delivery and a furniture delivery today, so I am staying at home to look after those (and thankful not to be going shopping in Norwich).
Both deliveries are here by 2pm, so that means I can take the dog out for her afternoon walk. Before I take her I decide to capture some of my post-DBS tremor and dystonia for use in another DBS video – you have to strike while the iron’s hot! Not sure where it will fit in with the videos that I currently have planned, but I’m sure it will get used at some point!
According to my Fitbit, I had one of the best night’s sleep I’ve had in a long time. I had a solid 7 hours without being restless or waking up. I don’t feel as refreshed as I should be feeling, though. My energy levels are quite low. My motivation has not plummeted, but it has definitely plateaued. My balance is still not great, and my speech is a tad on the weak side. Dyskinesia is a little more present than it has been of late, and I thought that I was just about rid of that! Tremor is still there in my left leg (mainly) but no worse than yesterday. I’d blame it all on being tired (and I am tired), but my Fitbit tells me I slept well!
My wife carries on with her mission to clear out the conservatory so that we can actually use it. A package arrives by courier containing roof bars for my wife’s little Seat Ibiza. When we go on holiday later this year, there will be 5 adults in the car – we figured out that the only way we will get all of us, plus our luggage, into the one car was by sticking a proportion of it on the roof! I spend a happy hour or two assembling the roof bars and the various fittings, and fitting them to my wife’s car. So far, so good. Now all we have to do is to have a dry run before we actually go on holiday – not quite sure what we will do if we (and our luggage) don’t all fit in…
We have an afternoon of activity! We load bags of rubbish into my wife’s car and take it to the tip (recycling centre) in North Walsham. Then we drop in on my wife’s father and brother in Neatishead, who are hard at work on her father’s self-build project. The fridge on our boat has given up the ghost, and my wife’s father has said we can have the one out of his “site office” caravan, which has been unused for many years. So we remove the fridge from his caravan and take it to Wayford Bridge, where our boat is moored. We carry the fridge to the boat, and carry the old fridge back to the car – another trip to the tip is on the cards, methinks! Then it’s back to North Walsham to do some food shopping, and then home in time to have some dinner. I’m shattered, but the dog needs her walk, so I take her for a walk while dinner is cooking.
Dinner (Thai green curry), beer (Hobgoblin), bed (early night).
My wife wants to sort out the mess in the conservatory today. The conservatory is full of all of my junk, materials left over/not yet used for the renovation of our cottage (which would have been completed long ago, if it hadn’t been for my Parkinson’s Disease) and a wide selection of hand tools and power tools ranging from small scrapers up to a heavy duty SDS drill. The problem is that there really isn’t anywhere else to put it, although I know that some of it is going to end up at the tip, and some of it will end up being stored in the garden shed. I try to assist with this task of organising stuff but, in all honesty, I’m more of a hindrance than a help. I’m also a little off balance today, and stepping over and around things isn’t exactly conducive to remaining vertical! After two or three near misses, I decide to keep out of the way and sort out a stack of paperwork that is waiting to be sorted (to be fair, it’s been waiting for quite some time!).
Paperwork sorted. There’s a stack of waste paper for the recycling bin, and our paper shredder is nice and hot due to my identity theft paranoia. I take the dog for her afternoon walk. My wife is still slaving away out in the conservatory – I really do admire her drive, energy and enthusiasm. I’m feeling totally knackered, and I haven’t done 10% of what she’s done.
I help bring stuff back into the conservatory from the garden when my wife finally declares that she’s had enough. We eat dinner (prepared by my wife) and then we sit and relax for a little while before heading off to bed. I self-medicate with cannabis to assist me with getting off to sleep – although I’m physically knackered, my mind is working overtime and I know I need something to enable me to switch off.
I’m still troubled by tremor in my left leg (mainly), but other than that, I’m feeling pretty good. Tremor has always been my main symptom and I hope, above all else, that I’ll eventually defeat it with my DBS. Motivation and energy were things that I had never expected to be influenced by DBS, yet it’s very clear (to me) that they absolutely are. Now that I have regained some of my former “oomph!” through adjusting my settings (at least I think it’s through adjusting my settings) I’m loath to change my settings in search of better tremor control, and lose (possibly) my current positive state of mind. At least I have a record of what I have done, settings-wise, and how those settings have affected me. If I choose to explore the Group ‘A’ settings, and they prove problematic, at least I can return to the settings within Group ‘B’ which have given me the best result.
My wife and I venture out to the big car boot sale at Aylsham. The weather is very variable this morning – gusty wind and sunshine between the showers – so there aren’t many people there today. We go to my wife’s workshop to pick up a curtain pole that I need to get fitted today, and then return home so that I can do so! I locate the various tools that I require (after some searching and cursing) – workbench, hacksaw, tape measure, spirit level, cordless drill and charger (because both batteries are flat), drill bits, rawlplugs and a pencil – and set about the task in hand, while my wife zooms around the house like a thing possessed, putting washing in the machine, vacuuming, hanging out washing, cleaning the bathroom, etc., etc.
My YouTube video is getting some views – I have had some favourable comments on Facebook and Instagram, and I’m pleased about that – it will spur me on to make some more, and I’ll enjoy doing them.
Dinner time, followed by beer time, followed swiftly by self-medication (cannabis) time…
Today I’ve been mainly video editing… It’s been a very long time since I did any of this stuff – maybe 9 or 10 years. Back then my camera was state of the art (passed by the BBC for broadcast quality video) but that was before the advent of High Definition video. It’s still a nice piece of kit, though, and definitely good enough to shoot some footage for YouTube videos. Back in the day, I was also using some fairly sophisticated video editing hardware and software – now I’m using an ancient Macbook and some free bundled software (iMovie), which is fairly limited in its capabilities. Still, I had forgotten how much I enjoyed putting together a video – planning (and getting) the shots, writing the script, importing the captured video to my computer, and piecing it together as planned, doing a voiceover, captioning it with sub-titles, and finally outputting something that I am proud of.
Apart from two visits to the village hall field with the dog, I have spent the entire day producing a video of less than 3 minutes in length – “DBS Operation Scars” – a catchy little title, I’m sure you’ll agree. I’m pleased with the results, though, and I publish it to my YouTube channel.
My tremor has been fairly persistent today, mainly in my left leg. I mentioned, a couple of days ago, that I hadn’t had to self-medicate for a little while. Well, yesterday I self medicated, and today I’m going to do so as well! I try a little cannabis just after lunchtime, and it helps a great deal. This evening I add a couple of beers to the equation, and achieve a reasonable state of relaxation. My voice gets a little weak this evening, but that’s been a bit of a feature of my current settings. My balance isn’t 100%, but it’s still better than it has been. Dystonia – there, but manageable. Dyskinesia – there, but only barely there; definitely not troubling me unduly.
I had to go to Wayford Bridge to leave my boat keys at Bank Boats this morning. My wife had noticed the sound of trickling water when we last stayed aboard, and it turns out that the bearing where the prop shaft exits the hull of the boat has sprung a little leak. The nice man at Bank Boats is going to take a look at it and determine the remedial action required. I’m bracing myself for an expensive repair, because nothing is ever cheap when you have a boat! While I’m in the vicinity, I pop into Stalham and get my air conditioning re-gassed. My car has been largely unused for the last couple of years, and last time I used it, it was blowing warm air at me. The garage pumped it full of the relevant gas, and it’s much cooler now!
When I got home, I posted a few adverts on Facebook to sell some of my old (large) furniture that doesn’t fit into our little cottage, and then recorded some video to edit for my YouTube channel. I notice that I have a fair bit of tremor in my head/neck today – possibly no more than usual, but I noticed it when watching myself on the video recordings that I had made. Maybe it was because of the active morning I have had. It’s certainly true that as the day goes by and I start to tire, my symptoms become more noticeable. The tremor that I now have in my arms and legs, although not what I would call severe, is significantly more than was apparent first thing this morning. My dystonia is also more pronounced. Balance is okay today. My walking seemed a little “wooden”, and my voice is weaker than normal. Motivation and energy are both much better than has been the case lately – long may it continue!
I decide to increase my left side voltage to the maximum permissible on my Group “B” settings – 1.75v! If this doesn’t help with the tremor in my left leg, then I think I’ll have to start exploring the Group “A” settings… In the meantime, I self-medicate!
I slept well, my wife didn’t. She decides to take the day off work today and attend to things at home. I decide that I’m going to play around with YouTube and video editing today.
I’m feeling very stressed for some reason, and it’s having a big effect on my tremor and dystonia. The last few days I would have said that the tremor on my right side was about 1.5 (on a scale of 1 to 10), and the tremor on my left side was about 3. Today my right sided shakes rank about 4.5, and the left is about 6. It makes using the laptop a little tricky, but I persevere (and win). I’m going to risk another increase in voltage on my left side this evening. I still daren’t increase the right side. The dystonia in my right foot has gone from 2 to about 5, which is a bit of a nuisance.
Mentally, I’m still feeling that I can achieve stuff, so that’s good. My balance seems pretty good also, but my speech is a little strangulated at times.
I get myself out of the house to walk the dog this morning, and again this afternoon. I manage to edit a short video of the dog, compose some background music using GarageBand, and publish the video to my YouTube channel. Since I have never used the iMovie video editing software, the GarageBand audio software, or published a video to YouTube I feel a (well deserved?) sense of achievement. I’m now itching to do some Parkinsons Disease/Deep Brain Stimulation videos, but I need the house to myself to do those – I hate being watched when I’m feeling self-conscious and speaking to camera! I might even have to send the dog out of the room… Perhaps I will do some more work on the scripts this evening.
I increase the left hand voltage on my device to 1.7v, crack open a bottle of Hobgoblin, and self medicate with alcohol and cannabis.
I wake with tremor in my left leg, as usual. The adjustments I have been making to my settings (left side) haven’t really achieved what I was hoping for in terms of tremor control, but if they are responsible for my upswing in mood, then it hasn’t all been for nothing – I’m still feeling good.
I increase the voltage by another 0.05v this morning. Still hoping to find a setting that will settle the tremor in my left leg. I’m now getting 1.65v on the left side and 2.1v on the right. There is no change in sensation when I increase the voltage, but I think that’s just because it is such a miniscule amount and the effects are much more subtle than when I was adjusting by 0.1v previously. I would increase the right side as well, but I still have (mild) dyskinesia on that side. If the dyskinesia decreases, then I’ll try a little more electricity because, although my tremor is pretty well controlled on the right, it would be good if I could reduce the dystonia in my right foot.
I am still getting stuff done – paid the gas and water bills online, sent off a cheque to the parish council for the allotment rent, posted a “New Baby” card to an old friend of mine, walked the dog (twice), and played around editing some video on my MacBook, just to get my hand back in. I also started reading the user manual to my camera – it’s been so long since I used it, I’ve forgotten what all of the buttons and switches do…
We are going swimming with our granddaughter this evening, so that’s 3 sessions of exercise today – not exactly a new world record, but a step in the right direction.
I’m almost afraid to say it… I feel that I can accomplish things today. I have a list of things to do as long as my arm, which would normally seem quite daunting, but I’m taking it one thing at a time, and I’m actually doing stuff!
I take the dog for a walk, and then sit down and do some planning for my YouTube video channel – I need to decide the subject matter of each video, the duration and the content. I need to script them, and rig up some sort of autocue device. I start scripting the first video, and download and test an autocue app on my iPad – so far, so good.
I prepare a quotation for boat curtains and cushion covers for my wife’s business.
I visit my elderly neighbour, and set up his internet radio for him – something that I have been planning to do for several weeks now. He’s so grateful to me that I feel a bit of a heel for taking so long to get around to it.
I hang the washing out on the line.
I take the dog for her afternoon walk, and then sort out the holiday insurance for our trip to Lanzarote later this year. Then I work out the total cost of the holiday so far, and email everyone to let them know what they owe me!
I still have a fair bit of tremor, especially on my left side, but I’m feeling that I’m more in control of it, than it is in control of me. Don’t ask me why, it’s possibly all in my mind, but that doesn’t matter. What matters is that I’m feeling so much more positive, and I’m actually doing stuff.
I had a disturbed night’s sleep and woke with plenty of tremor in my left leg. If it doesn’t settle down, then I’m going to be giving my settings another tweak.
I’m still feeling in a better state of mind, and I’m not suffering any side effects (well, hardly any) from the increases in voltage that I have made over the last few days. I’m almost tempted to think that I may be approaching my optimal device settings, but I’ll reserve judgment on that for a little while yet. I do notice that, when my wife suggests going to look for some new furniture in Norwich this afternoon, I agree without feeling the sinking feeling inside that has been a feature for so long now. I feel that I have more energy. I climb the stairs at home at a much faster pace than I have been doing, and without relying (too much) on the staircase wall to keep me upright. This is all positive stuff!
We go into Norwich and buy furniture for the house, and when we get back home I don’t feel so exhausted as I have been feeling. In fact I immediately suggest that we walk the dog (and we do). A regular reader of my blog might also have detected a significant reduction in references to self-medication. I do still crack open the odd bottle of beer, but this is because I enjoy drinking beer, not because I require the alcohol to help me to relax my muscles. Cannabis I use solely to ease my tremor, and haven’t felt the need to indulge on a daily basis for quite a while now.
After dinner, I decide to increase the voltage on the left hand side by another 0.05v (now 1.6v on the left, still 2.1v on the right) – take that, oh troublesome tremor!
Today we are leaving the boat. My wife has work to do, and I also have things that I should be getting on with. Regretfully, we unload the boat and reload the car for our trip back home.
I’m definitely feeling more positive – whether that’s because of our little holiday on the boat or because of my device setting adjustments, I’m really not sure! I do know that it isn’t because my symptoms are all under control, because tremor, balance and speech are all an issue at some point during the day. My dyskinesia and dystonia are both still present, but they are very much in the background and do not bother me unduly. Tremor can seem to be very much under control, and then my left leg will start, or my right hand will be almost out of control for a few moments – I concentrate for a few minutes, making movements to bring the tremor to heel again, and then suddenly it’s all under control again. As the day wears on, and I become more tired, my voice gets weaker and it’s more of an effort to communicate. Balance is unpredictable. I’ll seem to be in full control, and then it catches me out without any warning whatsoever. My reflexes are still pretty good, though, and I haven’t ever actually fallen to the ground.
I’m awake and out of bed before 8am. The sun is shining and the river looks beautiful. I feel that I have more energy this morning and plan to do some much needed work on the boat today – the wooden roof rails and the wood surrounds on the front windows are desperately in need of some attention. It doesn’t seem 5 minutes since we last sanded them down and coated them liberally in Sadolin, but we just worked out that was at least 3 years ago. So, my wife and I turn the boat upside down looking for the sandpaper and wire wool (which we do, eventually, find), and then she works on the roof rails while I work on the front screen. Some time later, when I have prepared the front screen surrounds, I’ve had enough, and I leave my wife to finish off the job by oiling the wood with linseed oil. The boat looks 100% better, and I’m pleased with myself for doing something constructive. I’m even more pleased with my wife for finishing the job!
I’ve still got some tremor on my left side, but I think it’s less troublesome than yesterday. Everything else seems to be about the same, so I might try another 0.05v on the left side a little bit later this evening.
My wife washes the boat down while I relax on the riverbank and watch. Then we dash off to North Walsham to get something for dinner (the fridge on the boat has given up the ghost, and I haven’t sourced a new (used) one as yet).
I increase the voltage to 1.55v on the left shortly after dinner, leaving the right side at 2.1v.
It’s a wet day in Norfolk and I don’t like sitting on the boat in the rain, so we will be going out in the car today.
I’m very aware of more tremor in my left leg when I wake this morning. My right side appears to be well controlled with no apparent dyskinesia. My mood is okay. Balance seems good. Dystonia is not bothering me. Speech is good, for a change.
We drink tea/coffee and have some breakfast before departing for Sheringham sorting office to pick up a parcel that we had not been at home to sign for. We arrived 1 minute after it had closed for the day. Undaunted, we then drove to nearby Holt where we scoured the charity shops for bookmaking supplies and children’s toys (successfully) and then travel back to Wayford Bridge via North Walsham to buy something for our evening meal.
We take the dog for a walk along the river, and I’m worn out by the time we return to the boat and struggle to stay awake. By this time, tremor on my right side has joined the tremor on my left, and I’m thinking about another tweak to my device settings.
We eat dinner, crack open a couple of beers and I increase the voltage on my left side by another 0.05v (now 1.5v). I’ll leave the right side alone for the time being.
Another day on the river. I awake before dawn to the sound of rain on the boat roof. Terrific! I snooze until just before 8am and then get up. We are looking after my nephew’s dog today, and he is bringing her to the boat on his way to work. My wife says that she thinks that my tremor is as little better this morning, and I think she’s right. The increased dyskinesia of yesterday has abated, thank goodness.
It’s a bit windy this morning, although the earlier rain has given way to bright sunshine, so we decide to return to our mooring at Wayford Bridge and just spend some time chilling on the boat. We motor slowly up the river, spotting a kingfisher and a couple of herons on the way, and moor up on the riverbank at Wayford Bridge. My wife busies herself cleaning the boat while I sit and entertain the dogs/do very little. I feel okay – not wonderful, but okay. My wife thinks I’m still a little withdrawn. 24 hours has passed since I adjusted my neurostimulator, so I increase both sides by another 0.05v. I now have 1.45v on the left and 2.1v on the right. Again, I’m unaware of any change in tremor. Again, I’ll leave it another 24 hours and see how I feel.
My nephew bought me a few bottles of beer for looking after his dog, so we plan to open one or two after we have had some dinner.
My wife has a lull in her business, so we are going to take advantage of it and spend a couple of days back on the river. We get breakfast out of the way, load up her car and head off to our mooring at Wayford Bridge.
My tremor has gone up a couple of notches and is really bothering me now. My wife says I’m still a bit quiet and withdrawn. I’m going to adjust my neurostimulator by a very small amount when we get to the boat. I feel that my mood is better than it has been, but evidently I’m just not my usual self!
We arrive at the boat, load all of our gear (and the dog) on board and then pootle down the River Ant to Barton Turf. It’s very quiet on the river and we only pass a handful of other craft as we make our leisurely way downriver. Once we have moored up at Barton Turf I adjust my device up by 0.05v on each side, so now I’m receiving 1.4v on the left side and 2.05v on the right. I feel no immediate difference, but I’ll give it 24 hours and see.
A couple of hours passes and the only thing that’s changed is that I have slightly more dyskinesia in my right arm, although not troubling me too much. I self-medicate with cannabis, and that gives me some relief from the damned tremor!
I’m full of tremor today. Even as I sit typing my blog, the laptop is bobbing around on my lap because of the tremor in my legs. My left leg is the worst, but tremor control throughout my body leaves a lot to be desired. I’m tempted to adjust my neurostimulator, but I don’t. My symptoms seem so variable at the moment that I might incorrectly attribute a change in them to a change that I make on my device.
I’ve been considering making a few videos and posting them on YouTube. We have all seen the miraculous DBS videos there, where the shaking wreck of a person with Parkinson’s Disease is transformed into George Clooney following the introduction of a couple of volts to the brain, and we all cling on to the hope that our surgery will also transform our lives in this manner. I want to make a video or two that illustrates the ups and downs following DBS, the sort of problems that I have encountered whilst trying to get the programming right. I used to do a little commercial video work in my dim and distant past, and still have all of the video equipment stored in my loft (it was broadcast quality in the early 2000’s, but HD has made it all obsolete now). I spend some time rooting around in the loft and locate my camera, tripod, and the necessary leads to transfer the captured video to my MacBook. So far, so good. I spend some time making sure that I can successfully record video on the camera (it hasn’t been used for at least 6 years), transfer the video to my MacBook, and output the edited end result in a format suitable for publishing on YouTube. Okay, that’s my achievement for today. Now I need to work on the content, but that’s for another day!
I take the dog for her afternoon walk, then sit on the sofa and try to get my tremor to calm down. I self-medicate (cannabis) and this is a great help. Aside from the tremor, I’m doing pretty well today – balance is fair, dystonia is bearable, dyskinesia is almost non-existent, and I’m motivated enough to go searching around in the loft! Energy levels are fairly pants, but thats probably because of the work I did on the allotment yesterday.
I am awake, on and off, from dawn. I get out of bed just after 8am, and leave my wife to catch up on her sleep. The dog is pleased to see me, thinking that she’ll get an early breakfast. I still feel extremely weary, and can’t understand why I couldn’t stay asleep while I was in bed when I could easily nod off again now that I am not!
The sun is out, and the river looks wonderful, even if the wind is a little too strong for comfort. My balance is still off, left side tremor persists, right side tremor is unpredictable (but generally under control), and my voice seems a little weak and husky today. Dyskinesia seems to be a little less troublesome than yesterday and I wonder if it is starting to abate now that my brain is getting used to the new programming. Dystonia is still quite uncomfortable in my right foot, but it’s been worse.
My wife wakes, puts the kettle on, makes toast. She’s good like that. We decide that we are not going out on the boat today because the strong wind will make boat handling difficult, and we don’t want to be doing anything difficult today. Instead, we pack our things, return home and then go to tend to our neglected allotment. Weedkiller is applied to most of the beds by my wife, whilst I lift the onions and dig up a few spuds. I manage about 30 minutes before I’m ready to drop. My motivation is still very low, but I did manage to make myself help out at the allotment – something I had been trying to make myself do for the last couple of weeks – so it must have improved slightly! I still lack energy, though. My wife thinks that my mood is a little bit low – she says that I’m quiet and not my usual self. She should know. She could tell which of my previous settings I was using just by looking at me. I am going to persevere with the Group ‘B’ settings without making any further adjustments – my symptoms appear to be changing without my interference: whether that is for worse or better, that’s something that will become apparent over time, I think.
My daughter is going home this morning, so we are all up bright and early(ish). I had another good night’s sleep, so the dyskinesia I’m experiencing isn’t causing me to thrash around like it used to do. I’m still recovering from the trip to London, though – I ache all over, and feel absolutely exhausted. I take my daughter to Gunton station to catch her train, and then my wife and I head off to a big car boot sale at Aylsham in search of bargains. We buy some toys for our granddaughter, and some bits and pieces to use in my wife’s new hobby of book making.
We have decided to go to the boat this afternoon, and spend the night aboard, so my wife organises everything while I sit on the sofa and recover from this morning’s exertions. I haven’t fiddled with my settings at all today, and they do seem to have settled down a bit from yesterday. Dyskinesia is still there in my right arm, but it’s bearable. Dystonia is also there but, again, it’s bearable. Tremor is a feature in my left leg, but is pretty much under control everywhere else. The only thing that appears to be slightly worse is my balance, and I find myself having to catch myself on a frequent basis. I’m not actually falling, though.
We get to the boat, transfer all of our gear from the car and then run the engine to charge the batteries and heat the water so we can have a shower. Dinner follows, and then we chill out with a beer or two.
I slept pretty well again, but woke up with back pain again. It was slightly different from the Group ‘A’ back pain of yesterday. Group ‘B’ settings caused middle back pain rather than lower back pain. Not so bad as yesterday. Tremor is bad, dyskinsia and dystonia is tolerable. I’m so disappointed. I felt so good immediately after my reprogramming. It doesn’t seem fair that it should have lasted for such a short time.
I sit on the sofa in the lounge and drink my tea and my Nutriblast, managing to stop myself from spilling any with a supreme effort. My tremor is through the roof on my right and my left side, so I decide to increase the voltage on my right side (my right side tremor bothers me more than that on my left side). I wind it up to 2.0v on the right – it has a good calming influence on my tremor (and my dystonia) but dyskinesia is increased. I’m going to live with it for the rest of today and see what happens. Perhaps my dyskinesia will calm down…
I slept well, but then I expected to because I was practically dead on my feet by the time we got to bed last night (this morning). I wake up with dyskinesia in my right arm and leg, and lower back pain. I left the hospital yesterday afternoon with my device set to Group ‘A’ settings – 1.7v on the left side, 2.0v on the right. Maricel told me that if I have dyskinesia, then it is a result of over stimulation and I should reduce the relevant voltage. The dyskinesia is really quite bad, so I reduce the voltage to 1.5v to try for some instant relief. It does provide instant relief in that the dyskinesia reduces a little and the lower back pain disappears, but at the expense of tremor and dystonia – swings and roundabouts, innit? I’m trying to ascertain my mood, but am finding it difficult because I’m feeling so weary from my busy day yesterday. I’m not feeling so good as I did immediately after my tune-up, that’s for sure – I’m hoping it’s just tiredness.
My son is returning to Dorset this morning, so I make us all a cooked breakfast – sausages, bacon, poached eggs, toast (my wife did the toast). He packs his gear into his car, and heads off pronto – he is due to be at work at 5pm, and I want to be sure he isn’t short of time and ends up racing to get back in time. I tolerate the increased tremor for a while, and then decide to try out the Group ‘B’ settings that were programmed yesterday. Tremor instantly calmed, but dyskinesia still a feature. Dystonia there, but less severe. I’ll give it time to settle before playing with the voltage.
Evening comes around, and the dyskinesia is getting a little more violent. I’m having trouble drinking my tea without throwing it over everything, so I reduce the voltage on the right side substantially to 1.6v (originally 2.2v on the right and 1.35 on the left) to get a broadly similar tradeoff between tremor and dyskinesia. It’ll be interesting to see how I sleep tonight…
I have an appointment at the NHNN today to have my device reprogrammed. My wife takes the dog to be looked after by her son for the day, and the rest of us get busy making sandwiches, getting paperwork together, making sure we can leave home at 10am. My appointment is at 2pm, and it’s about a 3 hour trip by car. My son is driving us today so that we can all go to the Blues Bar after my appointment – something he has wanted to do for a very long time.
We eventually leave the house at 10.15am, so I’m already getting stressed about time. We have a good trip down and, even with a stop at Birchanger Green Services, the satnav is projecting an arrival time just after 1pm. Even a wrong turn when we leave the M11 doesn’t add more than a few minutes to the trip. Then we hit the traffic, and my stress levels are going through the roof. My wife calls ahead to let the hospital know that we will be late – it’s almost 3pm by the time we get arrive at the NHNN. Travelling by train is so much less stress, and I remember why we stopped driving to London for our appointments now.
Maricel ushers us into an office, and we sort everyone out with chairs. She gives me an in depth interview about my symptoms and settings, checks my gait and posture and then sets about programming my neurostimulator. 30 minutes later she has completely revised the settings for both Group ‘A’ and Group ‘B’ on my device. I feel instantly better, and my children are amazed at the difference in me – I don’t think they had appreciated the effect on my mood (and even my facial expressions) that DBS can have. I feel happier, more motivated, my walking is better, my posture is improved, my tremor is back under control, my dystonia has all but disappeared and I’m thankful for the miracle that is deep brain stimulation.
We go to McDonalds on our way to the Blues Bar, and sate our appetites with chicken wraps, cheeseburgers, shakes and McFlurrys – dreadfully unhealthy stuff, but it’s only once in a blue moon.
The next few hours are spent in the Blues Bar listening to some quality live blues, and quaffing Adnams Ghost Ship. It’s gone 10pm by the time we get back to the car park under Euston station, and we don’t get home until almost 1.30am. I’m completely shattered, and I’m relieved that it wasn’t me driving us back to Norfolk.
We have a busy day ahead of us. I need to take my children over to Stalham to see my mother, but before we leave the house there is breakfast to prepare (my wife has filled the fridge with bacon and sausages, but I think toast and cereal may be the order of the day!) and the dog needs her morning walk. We will also drop in to check on the boat while we are over that way. Then this evening my wife’s sons, their girlfriends and our granddaughter are coming over to join us for dinner, so it will be a very full house.
We go to Stalham to visit my mum, drop into the boatyard at Wayford Bridge to check on the boat, and then head back home. I’m already extremely tired and it’s only late afternoon. I’m chasing tremor control with my settings – start the day on Group ‘A’, change over to Group ‘B’ because I have too much tremor, back to Group ‘A’ because Group ‘B’ isn’t helping, and so on… Dystonia is becoming more of a problem in my right foot, whatever the settings.
My wife’s family arrive and the next 3 hours are pretty hectic. My wife conjures up a feast out of nowhere, everyone chats and eats and drinks, and our granddaughter keeps us all entertained. Around 8.30pm, just as people are thinking about leaving, tiredness overwhelms me and I find my eyes closing on me without my permission. Half an hour later everyone has gone, and I’m okay again. My children insist on taking me to The Vernon Arms for a pint – who am I to argue?
My son is here for a few days. He wants me to pick up the guitar and (try to) play again. We spend much of the day listening to great guitar riffs on YouTube, and downloading guitar tab from the internet. We don’t make a huge amount of progress, but we do listen to some great music – Joe Bonamassa, Ben Howard, Jimmy Eat World, Foo Fighters and so many more. we also succeed in filling the lounge with guitars, guitar stands and amplifiers. I struggle to play a sequence of notes with any fluidity, but it is one of the things that I’d really love to master. I blame it on the Parkinson’s Disease, but perhaps it’s down to a complete lack of talent. Whatever, there’s no denying that I do love to spend time mucking about with guitars and listening to great music.
I can’t find a good setting on my device at the moment. Group ‘A’ is affecting my speech at the moment, making me slur a little – I can feel my tongue become more wooden when I change settings from Group ‘B’ to Group ‘A’. Group ‘B’ was a more effective setting for tremor control, but it actually seems a little worse than Group ‘A’ today, and with the added side-effect of dyskinesia. Difficult to know which setting to choose for the best result. I put up with Group ‘B’ for a couple of hours and then revert to Group ‘A’. No doubt I’ll change again in a couple more hours…
My son and I collect my daughter from Gunton Station, take the dog for a walk, and then sit and chill until my wife arrives home from work. My wife knows which settings I am on without even asking. Group ‘A’ settings make me quiet and withdrawn, monosyllabic and unsmiling. They aren’t really offering me much in the way of tremor control, either. I change back to Group ‘B’ until bedtime – hopefully I’ll be more sociable!