Month: June 2019

My voice is deteriorating again so I decide to change my neurostimulator settings again, and select group “B” settings – adjusting the voltages to the minimum allowed (1.40 volts on the left, 2.15 volts on the right).  Significant tremor on both sides (but mostly in my left leg) instantly emerges.  I put up with it for a couple of hours before increasing the left hand voltage to 2.00 volts and the right hand voltage to 2.25 volts – this calms the  tremor on my right side, and makes the left sided tremor more bearable. 

This evening my wife and I go to her eldest son’s house in Hevingham to meet the latest addition to the family (she’s gorgeous!), and my tremor is sufficiently contained to enable me to hold her for a little while. 

When we get back to Southrepps I self-medicate with Hobgoblin and cannabis, which helps with tremor control and helps me get off to sleep.  

Our third grandchild enters the world today (another girl, 6lb 6oz – mother and baby doing fine), so our day revolves around this.   We meet up with my wife’s youngest son and his wife at Longwater retail park where we melt several credit cards buying baby clothes in Next, and then adjourn to their house in Hevingham for food and drink.  

Today I drive to support some good friends of ours who are taking part in the John West Great East Swim at Alton Water near Ipswich.  My wife stays in Norfolk because our next grandchild is on its way and she wants to be on hand for her eldest son and his partner if they need her.  The swim goes swimmingly, and our friends and I retire to a local pub for some light refreshment before departing for the drive back home. 

I arrive home late afternoon, absolutely shattered from the driving – probably exacerbated by my DBS settings, which are permitting some tremor to break through and also causing a fair amount of muscular tension in my arms.  

There’s no sign of the new baby just yet, so my wife is at her eldest son’s house in Hevingham, babysitting our eldest granddaughter (her eldest son and partner are at the Norfolk and Norwich Hospital).  I self-medicate with some cannabis and a bottle of Hobgoblin,  switch my DBS off,  and get to bed. 

Last night I turned off my DBS and proved (again) the efficacy of cannabis as a medicine.  My voice was so weak when I arrived home (from visiting the NHNN in London) late last night, that my wife suggested that I turn it off to see if my voice was any better without it.   The difference is instantly noticeable – my voice is stronger, and my tremor comes back with a vengeance!  I vape a little cannabis, and within 5 minutes my tremor has eased a little.  Within 15 minutes it is completely under control.  When we go to bed my wife has to ask me if I’ve still got my DBS switched off (I had) – in fact I left it switched off all night, only switching it back on when I awoke this morning because of the severe tremor in my legs.  I change my neurostimulator to use group “A” settings, and then turn the left and right voltages down to the minimum (left side is now 2.50v, right side is 2.05v) – tremor control isn’t 100%, and I have some dystonia in my right foot, but it’s tolerable so I’ll leave it like that for 24 hours or so and see how I feel.  

I’m travelling down to the NHNN in London today, so that the DBS speech therapist and his neurologist buddy can have another fiddle with the settings of my neurostimulator.  I catch the 10.07am train from Gunton station and arrive at the hospital (slightly out of breath) a few minutes before 1.30pm.   As before, the first thing that happens is that the DBS speech therapist creates a benchmark by recording my voice prior to any adjustment.  The neurologist then attempts to improve my symptoms, concentrating on my voice and tremor.   On this occasion, however, he is unable to locate settings that are an improvement on those that he programmed on my last visit, three weeks ago.  To say that I’m disappointed is an understatement, but the neurologist suggests that I cycle through the three lots of settings that are currently programmed into my device, in order that they don’t get a chance to “soak in” (or for my brain to become accustomed to specific stimulation) and see if that improves matters.   The speech therapist listens to my voice and doesn’t even bother to compare it to the benchmark – he can hear that nothing has changed.   I tell him that the neurologist has been unable to improve my voice, and his suggestion of cycling through my settings.  He wishes me luck, and that’s it…

I finish my day in London in the usual fashion (food from McDonald’s followed by some live music and a couple of beers in the Blues Bar) and then I catch my train back to Norfolk.

It’s payback time for the little bit of weeding that I did at the allotment on Monday afternoon, so my arm and leg muscles are stiff and painful, and I’m staggering around like a drunk – add this to my slurred speech, and the casual observer would be left in no doubt that I’d been on the sauce!

The DBS speech therapist responds to my email, and offers me an appointment tomorrow, which I gratefully accept, so I book myself a train ticket for tomorrow morning.  My London neurologist also replies to the email about prescribing me exenatide that I sent her yesterday, saying that she “will look into it”.   Strange… I was under the impression that that’s what she said she was going to do when I last saw her (in February).  I hope I bump into her at the hospital tomorrow, so that I can pester her some more!

I’m feeling very low at the moment, probably (in part) due to a lack of motivation that I’m having great difficulty in overcoming, and also (I think) because my voice has been giving me trouble again.  I decide that I simply must get off the sofa and get out of the house for an hour or two, so I get into my car and go for a blast in the countryside, just for the hell of it. 

After a couple of very pleasurable hours, I return home and attend to more important matters.  My voice has deteriorated significantly over the last week or so (following a review of my neurostimulator settings, almost three weeks ago, which had, initially, improved things) and I had promised the DBS speech therapist that I’d drop him an email to let him know how I was getting on – so I send him an email apprising him of the current situation, and asking his advice.   While I’m at it, I send an email to my London neurologist to ask what progress (if any) has been made with obtaining exenatide for me – she told me that she would chase it up when I last saw her in mid-February, and I’m getting just a little impatient…

I’m tired and unmotivated – what a winning combination!  Consequently, most of the day is spent sitting on my backside in the lounge, surfing the internet.  

This afternoon I bully myself into going to the allotment when I take the dog for her second walk of the day.  I need to harvest some more spinach, and I take a nut and bolt with me to try to repair the handle of the lawnmower so that I can cut the grass.   Recent wet weather has turned the place into a jungle, so I urgently need to spend some time down there making it nice and tidy.  I pick a bag of spinach and also harvest a couple of pounds of rhubarb (which I’ll give to our neighbour) and then I spend half an hour weeding around the kale, pumpkin and courgette (zucchini) plants.  Lastly, I try to fix the lawnmower, but the bolt that I have brought with me is too big for the job so I’ll have to find a smaller one and try again another day. 

It’s Father’s Day, so my wife and I are invited to join her sons, their partners, her ex-husband and our granddaughters for breakfast in Norwich.  

It’s lunchtime by the time we get back to Southrepps, and my wife busies herself wrapping gifts for her father whilst I open cards and gifts and chat to my kids online. 

This afternoon we drive to Smallburgh to visit my eldest nephew and his girlfriend, who have just bought their first house together.  We take a bottle of prosecco and a housewarming card, and are given a tour of the property, which is a really nice 2-bed terrace.  We drink a beer together, and then my wife and I depart for her parent’s house in nearby Worstead to give her dad his Father’s Day gifts.

My wife is working, once again, so I have a quiet day.  I walk the dog, tidy up and vacuum downstairs, and slump on the sofa in the lounge, catching up with the news on Twitter and by reading The Metro online.

This evening we drive to The Marsham Arms (nearer to Hevingham than it is to Marsham) to attend the 50th birthday party of an ex-colleague of  my wife.  By the time we arrive, all of the seats indoors are taken, so we sit outside on the patio, eating, drinking and chatting until it starts to rain. Forced to go back inside, there’s only so much standing that I can take so, after singing happy birthday to the birthday girl and scoffing some birthday cake, we make our excuses and return to Southrepps.

It’s Friday, so it’s vlog day and my failing voice is causing me problems!  It’s now over two weeks since I travelled to the NHNN in London and had a thorough shakedown of my DBS settings.  The improvements that were made on that day have slowly faded as my brain has become accustomed to the changes in stimulation and the new settings have “soaked in”.  Today I find it much more of an effort to speak, and my voice is higher pitched and I sound as though I’ve had a few drinks.  I’m using all of the strategies recommended by the speech therapist yesterday, but even so I think my voice sounds absolutely rubbish.  I’ll send an email to the DBS speech therapist next week and see what he suggests (he  asked me to let him know how I got on with the new settings). I have a feeling that I’ll be travelling back down to London in the near future.  

I have a speech therapy appointment at the community hospital in Norwich this morning, so I drink my mugs of tea (I’ll have my nutriblast for lunch when I get back), walk the dog and then jump into my car and drive to the hospital.  My speech has been in decline (again) over the last week or so, the new settings that the neurologist at the NHNN programmed have now “soaked in”, and the result is that my voice is softer, higher pitched and slurred, which is most disappointing.  The Norfolk speech therapist agrees that it sounds like I’m having to work much harder to talk, and we spend the appointment working on articulation and enunciation, which helps me develop strategies to help me make myself understood.  I feel that I’ll be making another trip to the NHNN  sooner rather than later, but I’ll drop the DBS speech therapist an email, in the first instance, telling him that I’m struggling a bit, and see what he suggests.

I am still managing to do the bare minimum today. Two dog walks (one of them in the rain) and a bit of a tidy up downstairs, followed by a quick dash around with the vacuum cleaner.  That’s about it, although I do prepare dinner for my wife and I while she plays with the Fitbit scales that I bought on eBay for her (and which were delivered this afternoon).

After dinner we watch some more Orange Is The New Black on Netflix, and I find (and order) some step-ladders on eBay that my wife needs for her soft furnishings business.

It’s still grey and wet outside but, on the plus side, my back is slightly less painful than it was yesterday.  I have been referred (at my request) for a series of physiotherapy sessions on the motorised exercise bike at North Walsham cottage hospital, starting today.  So, after walking the dog and drinking a couple of mugs of tea, I drive to North Walsham for my appointment.   I’m slightly cheesed off that my next appointment is now at the beginning of July (due to the unavailability of staff) because the benefits of this physiotherapy are cumulative, so any benefit derived today will have receded by the time of my next appointment.  I manage to cycle for almost 50 minutes, which I’m pleased with, given that my last session was 4 months ago. 

This afternoon I sit quietly and recover, before taking the dog for her afternoon walk (when the rain stops, briefly).

I’m feeling fed up at the moment.  I’m still in pain with my back, I’m still not feeling very motivated and it’s cold, wet and windy outside – so I’m sitting on the sofa in the lounge (just for a change) doing very little apart from reading The Metro online. 

This afternoon I make up some thiamine capsules for the week ahead, re-pot some seedlings in the conservatory, walk the dog (in the rain, which shows no sign of stopping) and vacuum downstairs.

That’s it, day over.   My wife arrives home from work, we eat dinner, watch some Orange Is The New Black on Netflix, and get a (reasonably) early night.  

I’m still popping painkillers this morning – my lower back pain is still there, so I sit down and take it easy while my wife races around cleaning and tidying, doing the laundry, etc.  

This afternoon we drive over to Marsham, where my wife’s sons are metal detecting in a field owned by her youngest brother’s mother-in-law.  Both of her brothers are there as well, so it ends up being a bit of a family get-together.  While we are there, my wife’s eldest son finds an old coin (identified as an English Jetton, which is about 700 years old) and that has made his day worthwhile!  

On return to Southrepps, we drop in to see Sheila Robinson (a local artist) and her husband, who are friends of ours.  It is the last day of Open Studios, and we have been meaning to go to see them before it ends.  We have a cuppa and a good old chinwag with them, buy some of her beautiful greetings cards and then leave them in peace, promising not to leave it so long next time!

I have the day to myself (my wife is at work again), and I spend the majority of it sitting on my backside.   I still have quite a lot of lower back pain, but it doesn’t hurt quite so much when I sit still.  That’s my excuse, and I’m sticking to it!  I  take the dog for her walks, but otherwise remain in the house.

This evening my wife and I join her sons and their partners, her ex-husband and our granddaughters in Hevingham for a takeaway Chinese meal from the Eastern Sea takeaway in Aylsham.   This get-together was, ostensibly, to discuss and book activities for our family holiday to CenterParcs in Longleat later this year, but that was really just an excuse – the women decided what we are going to do and when we are going to do it, us blokes were just there to make up the numbers.

I’m still fairly crippled this morning, although my back pain is only about half of what it was yesterday. My wife takes the dog to work with her, which relieves me of my dog walking duties for the day, so I won’t have to hobble around the field by the village hall.  I didn’t sleep very well last night (due to back pain), and fatigue shows in my speech, which is a little indistinct and slurred this afternoon, and deteriorates as the day progresses. 

Our neighbour suggests a takeaway curry round at their house this evening so, having completed my weekly vlog ahead of schedule (for a change), we drive to Al-Haqq’s Kitchen Indian takeaway in North Walsham, place our order and retire to the nearby Hop In (a tiny local bar, serving a variety of cask ales and craft beers) where we enjoy a pint whilst waiting for our food to be prepared.  

There follows an evening of good food, red wine and much conversation and laughter. 

Any thoughts of washing my car or going to the allotment today go straight out of the window this morning.  I’m sitting on the sofa in the lounge drinking my tea, and everything is fine.   I stand up to take the dog for her morning walk, and suddenly I have crippling pain in my lower back and I can’t stand up straight.  I’m guessing that one of the bulging discs in my lower spine (diagnosed over 15 years ago, but not having given me any trouble for a long time) is the culprit.  I never take pills unless absolutely necessary, so the fact that the first thing that I do is take some co-codamol is an indication of how much pain I’m in.  

The painkillers don’t even take the edge off it, and cannabis isn’t much better, so I sit as still as possible (I’ve had a lot of experience of doing this, so I’m pretty damn good at it) with a cushion in the small of my back.   I take the dog out for her two walks, but it is absolutely agonising – I’m unable to stand up straight, and I hobble and stagger around the field by the village hall.  Luckily I don’t bump into anyone that I know.   

This evening I bombard my body with muscle relaxants and painkillers (alcohol, cannabis and ibuprofen), get myself to bed and hope that the pain will be more bearable tomorrow.

It’s a good day for washing my car (it’s overcast but dry, and the rain of yesterday will have softened the bird crap with which it is liberally covered) but I’m still not very motivated, and I’m still feeling fatigued.  Instead, I sit on the sofa in the lounge catch up with the news in The Metro online, and search eBay for another Samsung galaxy tablet (for my wife’s father). 

This afternoon, the sun comes out and I decide to combine walking the dog with a trip to the allotment to harvest some spinach and check on the courgette (zucchini) and pumpkin plants.  It’s hard to believe how overgrown it has got in just a few days, and I decide to run the mower over the grass paths.  Unfortunately, I manage to lose one of the bolts that secures the handle to the mower, so I only get about half of the job done.  I’ll have to find a replacement bolt at home, and return tomorrow to fix the handle and finish the mowing.

I have an appointment with my Norfolk neurologist at the Norfolk and Norwich hospital at 12pm today so, after drinking my two mugs of tea and nutriblast, walking the dog and helping our neighbour to install a new broadband router, I jump into my car and drive to Norwich.  The traffic is heavy and there are a multitude of road works so, by the time that I’ve managed to park and then walk to the Neurology Outpatients department, I’m 10 minutes late and not in the best of moods. 

Feeling a bit grumpy, I’m probably a little stroppy with my neurologist, particularly when he asks me how I am, and what medications am I taking.   We have yet another discussion about my use of cannabis (rather than taking dopamine replacement pharmaceuticals) and he actually watches my video showing the effect that cannabis has upon my tremor.   He promises to request cannabis for me from the Medical & Drugs Board, although he knows (as do I) that the chances of them approving it are zero.  I’m going to go into more detail in my weekly vlog this Friday, so take a look over on my YouTube channel if you’re interested. 

It’s raining steadily by the time I get back to Southrepps, which prevents me from doing any work down at the allotment or washing the car (or, should I say, gives me the perfect excuse) so I pop over to our neighbour’s for a cup of tea and a chat.

I slept like a log last night, so I should, therefore, feel refreshed and full of the joys of Spring.  I feel exhausted and incapable of achieving anything.  I desperately need to spend a couple of hours (at least) down at the allotment, weeding the vegetable beds and mowing the grass, but I simply don’t feel up to it.  My car is an absolute disgrace and I’d like to spend the afternoon washing it, but if I just take things easy then maybe I’ll have the energy to do so later in the week (and in the meantime perhaps we will get some rain, which would go some way to softening all of the bird crap and make the task a little less demanding). 

My wife’s youngest son (and his wife) invite us over for a barbecue this evening so, after taking the dog for her afternoon walk, we drive over to Hevingham where we sit out in the garden eating spare ribs, burgers and hot dogs while the midges make a meal out of us.

I have a disturbed night, and am awake multiple times with painful cramps in my lower legs. I had this on Thursday night, following my settings adjustments on Wednesday.  I’ve never had this before (hips, yes; toes, yes; calves and ankles, no) and since I’m not a great believer in coincidence, I expect it’s related to my new settings.   If it happens again, then I’ll try going back to my previous settings overnight…

I was always going to be feeling a bit fragile today (because I definitely overdid things yesterday) but my disturbed sleep means that I’m doubly knackered and really don’t feel like doing anything at all.   I really wanted to finish working on my wife’s car by vacuuming inside and cleaning the windows and dashboard, but that’s simply out of the question at the moment.

My wife arranges for us to meet up with her sons, their partners and our granddaughters for a picnic by the village hall in Hevingham, so she disappears off to North Walsham to buy picnic type food from Lidl, and then we drive to Hevingham to meet up with them all.  I’m not great company at the best of times, but I’m worse than usual this afternoon.  My wife makes up for my lack of energy by running around after the grandchildren until they (and my wife) are thoroughly worn out. 

We arrive home around 6.30pm, and I’m really not fit to do anything but have a shower and go to bed. 

My wife is in house-cleaning mode today, so I decide to keep myself out of the way by cleaning her car.  Hers is only a small hatchback (a Seat Ibiza Mk3) but by the time I’ve washed and polished it, I’m fit to drop.  It’s something that I never seem to learn – not overdoing things.  I’m well aware that I tire much more quickly than I used to, and also that everything is twice the effort (at least) that it was before Parkinson’s, but still I behave as if nothing has changed, and I’ll pay the price for that over the next two or three days. 

This afternoon my wife suggests going into Norwich to do some shopping.  I feel the need to get out of the house for a while, so off to Norwich we go.  I’m so fatigued that I find walking around the shops a real strain, so spend most of the time sitting down (wherever I can) while my wife searches for what she wants.  I’m relieved when it’s all over and we return to the car to drive back home.  

I’ve seldom felt this wiped out, so I really do need to give myself some time to recover.  An early night tonight and a day of rest tomorrow should go some way to doing just that.

I’m still recovering from last weekend (and a busy week this week) so that’s really decided the focus of this week’s vlog – the reasons for my fatigue, with the latest day trip to London (to have my settings adjusted with the aim of improving my speech) being one of the main reasons that I’m feeling so completely exhausted.  

I write a script without any problem, but filming is more of an issue than has been of late – I keep catching myself slurring, and have a multitude of retakes.  My voice is certainly  stronger than it has been for quite some time, but fatigue is causing me problems with enunciation, and I have to make a significant effort to be understood.   That said, as soon as I publish the completed video, I have a comment saying how much clearer my voice sounded, so perhaps I’m worrying about nothing.