Month: July 2019

I had a disturbed night last night, because of the current heatwave (I think) rather than as a result of turning my neurostimulator off at bedtime.  I woke up several times during the night, but was able to get back to sleep relatively easily, so eating some cannabis medicated chocolate brownie before going to bed had the desired effect. 

My physiotherapy appointment was cancelled again today, so I’m resigned to the discontinuity of my treatment – I’ll ask for my treatment to be restarted from the date of my next session (whenever that is!). 

It’s so hot and humid here today that I spend the majority of the day sitting quietly on the sofa in our lounge (windows open to encourage any breeze to cool the house down).

Today’s tasks (aside from the usual dog walking) are to order two new batteries for our boat, order some digital scales (for greater accuracy in filling capsules with thiamine, etc.) and make up capsules filled with thiamine for the week ahead.  I negotiate a discount with a battery seller on eBay, and place an order for the boat batteries.  I find some digital scales that will measure with the required accuracy (accurate to 1mg), so I place an order for those.  I make up 70 capsules of thiamine powder (each capsule containing approximately 400mg, so 10 capsules per day give me a daily dose of around 4g).  

My voice is pretty rubbish today (high pitched, slurred and indistinct), so I decide to give my brain the night off.  I vape sufficient cannabis to suppress my tremor, eat some medicated chocolate brownie just before I go to bed, and then turn my neurostimulator off – fingers crossed for a good night’s sleep!

I’m still unmotivated (and fatigued) but I need to get out of the house and do stuff, so my wife and I drive over to Wayford Bridge to make sure that our boat is still afloat, and also to measure the batteries (so that I can order replacements with confidence).  All is well, so we then head over to Norfolk Marine in Hoveton to price up some rope (to replace the ropes on the boat, which are disintegrating).  While we are there, we pop into Roy’s garden centre where my wife chooses some trellis for the front garden.  By this time I’m shattered and all I want to do is get back in the car and drive home – which is precisely what we do!

I have the day to myself because my wife is working (again).  I have been meaning to take the kitchen tap apart for several days now (it has recently started to drip, which is most annoying, not to mention an expensive waste of water), so today I grab the bull by the horns and dismantle it.   The tap is a ceramic disc type that doesn’t have the traditional rubber washer inside, so I search on YouTube for a video that shows me what I need to do.  It looks childishly simple (which means that even I should be able to do it) and, indeed, that proves to be the case – I take the tap apart, give the component parts a thorough clean and re-assemble it.  Voila!  A kitchen tap that no longer drips!

When my wife gets home from work we go to Lidl in North Walsham to do the weekly grocery shopping.

I’m struggling to motivate myself to produce my weekly vlog today.   I almost decide to give it a miss, but then decide to vlog about the fact that I’m so unmotivated that I can’t be bothered to vlog!  Funnily enough, it results in a half decent video, and I have quite a few comments thanking me for putting into words what many people with Parkinson’s Disease experience – I think it is a comfort to find out that you aren’t the only person affected…

This evening my wife and I drive over to Felthorpe to visit my wife’s youngest son, his wife and our youngest granddaughter, where they are camping for a couple of nights to try out a second-hand trailer tent that they purchased recently.   It wasn’t great camping weather (it was chucking it down with rain), but it was a good test of the trailer tent, which survived without letting any rain in.  

I have a marginally more productive day than yesterday – I call Yorkshire Bank’s helpline and manage to resolve the problem that I had yesterday (whilst trying to download last year’s statements for my wife’s soft furnishings business).   I don’t actually download all the necessary statements, but at least I now know what I was doing wrong!

I am getting stressed over our boat (again) because I haven’t yet ordered the new batteries that I need.   I forgot to measure the size of the existing batteries when we were last on the boat (two weeks ago), and I know that the existing batteries are very weak and don’t hold their charge very well.  I’ll have to go to Wayford Bridge (where our boat is moored) at the weekend, just to set my mind at ease. 

I’m feeling extremely tired today because of my late night last night (I assume), and I have absolutely zilch in the way of motivation.  I achieve absolutely nothing, although I try (and fail) to download bank statements online for my wife’s soft furnishings business (she needs them to accompany her company accounts when she sends them to her accountant).  I also research prices for new batteries for our boat, but don’t actually purchase them.

I’m supposed to be having an hour of physiotherapy on the motorised exercise bike, but staff shortages have resulted in the cancellation of my appointment this week – yet another break in the continuity of my treatment!  I occupy myself instead by booking a courier for a roll of fabric that my wife’s soft furnishings business needs to send – time absorbing, but a great deal less effort required. 

This evening my wife and I drive to The Waterfront in Norwich, to see Living Colour playing live.  It’s a brilliant gig which we both thoroughly enjoy, although I’m exhausted (again) by the time we get back home to Southrepps (just before midnight). 

The thiamine powder and empty capsules that I ordered last week have now been delivered, so I  fill a week’s worth of capsules (which is about all I feel capable of doing today).  I’m paying the price for my weekend of car cleaning – everything is an effort, and it feels like every muscle in my body is protesting.  This afternoon I decide to make the medicated chocolate brownies (a Jamie Oliver recipe, with an extra special ingredient – cannabis infused coconut oil.  I’ve made them to take at bedtime so that I can switch my neurostimulator off at night (to see if giving my brain a break from constant stimulation will help with my speech issues) but I eat one to gauge the potency of the medication – not bad!!

I’m aching all over this morning, from my car cleaning efforts yesterday, so you would think I would have the good sense to take it easy today…. Wrong!!!  My wife and I go to Lidl in North Walsham to do our weekly grocery shopping and, on our return to Southrepps, I decide that it’s a really good idea to wash and polish (and remove all of the tar spots from) her car which (thankfully) isn’t quite as filthy dirty as mine was.  This afternoon is like an action replay of yesterday, culminating in complete and utter exhaustion – my arm muscles are week and painful, and I’m getting painful dystonia in both of my hands.  I think I’m going to be laid-up for the rest of the week after this weekend!

My car is in desperately in need of a wash and polish, so that’s what I plan to do today.  My son bought me several Autoglym products for my birthday and Father’s Day, and has been gently nagging me to try them out – two birds with one stone, methinks!  I spend the entire day washing, removing tar spots from, and polishing my car.   By the time I’ve finished I can barely stand up because I’m completely exhausted – my car, though, is cleaner and shinier than I’ve ever seen it before.  My wife (who has been at work today) returns just after I have finished my car cleaning, and  prepares our evening meal, which is just as well – I’m certainly not capable of doing anything more today…. 

I have agreed to sit with our neighbour (who is currently unwell) whilst her husband goes to the cottage hospital in North Walsham for some physiotherapy this afternoon.  This clashes with the production of my weekly vlog, so this morning I hastily write a script and film myself so that I can edit the video while I’m at my neighbours’ house.  At lunchtime I gather up my MacBook, trackpad and Samsung tablet, and wander across the road (looking both ways, obviously!).  I edit the video, make (and drink) several mugs of tea, and keep my neighbour company, by which time her husband returns and relieves me of my duties.  

I’m busy ordering stuff online today – I need some more thiamine powder and some capsules (I’ll run out early next week) so getting those ordered is a priority.  Amongst my other priorities is collecting my car from Autowerke this afternoon, when the mechanic calls me to tell me that it’s ready.   My wife collects me from Southrepps and drives me to Norwich, where I am separated from a lump of cash and reunited with my lump of metal. 

I have a bit of a disastrous morning…  I have a speech therapy appointment at Norwich Community Hospital so, after taking the dog for her morning walk, I get in my car and drive to Norwich.  My appointment goes smoothly, and we identify some areas (by watching a number of my weekly vlogs) that I can work on to improve my clarity of speech.  When I get into my car to drive home, I wind down the electric windows – with a creak and a twang the cable on the passenger side snaps, and the window is stuck in the open position.  Cursing (liberally), I decide to fill up with petrol and then pay a visit to Autowerke (the garage that does all of the work on my car) which happens to be on my route back to Southrepps.   I fill up at the local Tesco petrol station, and then discover that my car won’t start because the battery is flat.  Luckily I have some jump leads in the car and I manage to persuade a very kind young lady (who was filling up at an adjacent pump) to permit me to jump start my car from hers.  Next stop, Autowerke!  I book the car in for repair, a service and a new battery – it looks like it’s going to be an expensive week.  I leave the car at the garage, and my wife collects me.  

This afternoon we take our two senior granddaughters to the circus at Northrepps, accompanied by my wife’s parents and her niece.  Our granddaughters enjoy the show (in the main) although the 2 year old finds the clown a little frightening – I hope we haven’t scarred her mentally!

It’s physiotherapy day, so I drive to the cottage hospital in North Walsham and cycle for just over 45 minutes on the motorised exercise bike.  My other forms of exercise today are the usual dog walks (two of) and making up some more capsules of thiamine – I am nearing the end of my supply of thiamine, so I need to decide whether or not to continue with it (and order some more) because it is quite expensive and I don’t appear to be getting any benefit from it.  In the end I decide to order one more packet on the basis that these things can take several months to make themselves felt (and, probably, I’m clutching at straws ever so slightly). 

I drop in on our neighbour to see how she is, and have a cup of tea and a chat.   She’s suffering with extreme anxiety which I’m sure cannabis would help her with, but she’s resistant to trying anything that isn’t prescribed by her doctor – if only this country would get up to speed on medicinal cannabis!

Not a lot going on here today – I’m still feeling fatigued and lacking in motivation, so I’m mostly sitting on the sofa in the lounge catching up on current events on The Metro online.  I do manage a quick excursion to the primary school in Northrepps to purchase tickets for a children’s Circus that is visiting this week, and to which we are taking our two senior granddaughters on Wednesday.

Late this afternoon I pop in to see our neighbour (who has been unwell recently).  We have a cup of tea and a chat, and then I return to my sofa!

We both have a good night’s sleep on the boat – there must be something soothing about the movement of the boat on the water, because we always seem to sleep soundly on here.  

I spend the day sitting in the sun reading the book sent to me by my Facebook friend in Canada (Always Looking Up by Michael J Fox) while my wife elects to scrub the  outside of the boat from  roof to waterline.   I read the book from cover to cover whilst the boat is transformed from a very grubby thing into a clean and shiny vessel. 

We return to Southrepps in the late afternoon, both of us exhausted (my wife, justifiably; me, less so). 

We are going to the boat for the night tonight, so my wife busies herself with the usual weekend chores while I walk the dog and post links to my weekly vlog on Facebook and a number of online Parkinson’s forums that I am subscribed to.  It’s late afternoon by the time we have packed the car with bedding, overnight bag, charged boat battery, dog etc. and driven to Wayford Bridge where our boat is moored.   We pootle down the River Ant to Barton Turf where we moor up and cook our dinner, before realising that we have left the bag containing the beer inside my wife’s car back at the boatyard – disaster!!  After we have eaten our meal we decide to motor back up the river to the boatyard, where we retrieve the beer and chill out for the evening. 

I’m having great difficulty in motivating myself to produce my weekly vlog, so most of the morning is spent checking social media and reading the Metro online, rather than researching and writing a script.  I am, therefore, extremely behind schedule.  My wife calls me this afternoon to tell me that we are invited round to her eldest son and partner’s house this evening to see our latest granddaughter, so I drive over to Hevingham once I have published my video, arriving almost 2 hours later than everyone else – better late than never!

Another day passes by without me donning an apron and preparing the medicated chocolate brownies that I’ve been planning – I won’t have time to do them tomorrow (Friday being vlog day) so it’ll be next week now (unless I get the opportunity and inclination to make them over the weekend).  On a more positive note, I finally finish writing a letter (over a consumer issue) for my wife’s youngest son and his wife, I email Norman Lamb (my MP) taking him up on his offer to “intervene further” in my quest to be prescribed exenatide, and I write a letter to my Norwich neurologist to correct his factually incorrect letter to my GP. 

I wrap the day up by preparing a few days worth of thiamine capsules. 

I feel unrefreshed by sleep, even though I slept fairly well last night, and I am fighting sleep on a number of occasions.  Needless to say, I don’t do very much at all today.  I have been neglecting to write my daily blog, so I manage to catch up on that while I’m sitting on my backside in the lounge.

I intended to make some medicated chocolate brownies this afternoon, but I simply can’t generate sufficient enthusiasm for the task – tomorrow, perhaps…

I feel extremely anxious over tasks that I need to perform that I can’t motivate myself to do, letters and emails that I need to respond to that I keep putting off.  It seems wrong to medicate with cannabis to alleviate my anxiety (rather than motivate myself to get stuff done) but being unmotivated is significantly better than being anxious and unmotivated…

I have a physiotherapy appointment at the cottage hospital in North Walsham this morning.  I manage just over 45 minutes on the motorised exercise bike, which I’m reasonably satisfied with. 

While I’m in North Walsham I call in to Lidl and purchase the ingredients for some chocolate brownies that I intend making later in the week.  When I get back home I infuse some coconut oil with cannabis with the intention of using the infused oil when making the brownies – I need to have some edibles (slower release than vaping cannabis) for nighttime so that I can turn my DBS off when I go to bed, and give my brain a rest from constant stimulation. 

I bump into one of my neighbours whilst taking the dog for her morning walk.  She senses my mood (I’m feeling very low today) and asks me in for a cup of tea and a chat.  While I’m there I assist her husband with manhandling a piece of slate into his car and taking it to a local workshop to have it cut to size, and then sit in the sunshine in their back garden and have a bite of lunch with them. 

While I think about it, I email the parish clerk about the allotment to inform her that I do not wish to renew the lease this year, due to ill health.  I feel defeated by it, and I hate being defeated, but if I no longer have the energy to tend to it (and I haven’t) then there’s no sense in being a fool about it. 

I’m aching all over from my exertions at the allotment yesterday, so I’m moving around rather more slowly than usual today.  I’ve been stressing about the boat, because we haven’t been to check on it for some time (and I have a recurring nightmare about finding that it has sunk), so this morning my wife and I drive over to Wayford Bridge (where our boat is moored) to make sure that it is still afloat. 

It is still on the right side of the water, but the main battery (which runs the bilge pump) is almost totally discharged, so we bring it back to Southrepps for recharging, putting one of the leisure batteries in its place for the time being.

This afternoon we go to Hevingham (again) to see our latest granddaughter meet her great-grandparents.   I get to hold her again, and I’m so grateful for my DBS – when our first granddaughter was born (prior to my operation) I hadn’t been comfortable holding her because of my severe tremor. 

It’s a beautiful, hot sunny day here in Norfolk, and I decide to go to the allotment to harvest some spinach and water the courgette (zucchini), pumpkin and kale plants.   Recent rainfall, followed by the current spate of warm sunny weather, has turned our plot into a jungle.  The spinach plants have all gone to seed and are almost as tall as I am; the grass is almost waist high in places, and I’m feeling defeated.  I pull up the spinach, weed around the courgette, pumpkin and kale plants (and water them), and then cut down the worst of the weeds with the shears.   I’m completely knackered after less than 30 minutes work, and I stagger back home to collapse onto the sofa to recover. 

This afternoon my wife and I are invited to a barbecue at her youngest son’s house so, after I have recovered sufficiently, we head over to Hevingham where we sit in the garden and are well looked after by the younger generation.

I’m extremely tired from being at the Royal Norfolk Show for the last couple of days, and so my voice is suffering more than usual.   I manage (with gargantuan effort) to employ strategies suggested by the speech therapist, projecting my voice, slowing my rate of speech and exaggerating my enunciation when filming my weekly vlog.  I still think that my voice sounds high pitched and indistinct, but one of the first comments that I receive on YouTube says that my voice is sounding clear and strong, so perhaps I’m being over-critical.  

Another long day at the Royal Norfolk Show (promoting my wife’s soft furnishings business).  I take my video camera with me today, to film one of our trade stand neighbours (massagical) who wants to have a video on YouTube.  I’m not sure that the sound quality is acceptable, but I’m sure that I can do something with the footage that I take, even if I have to narrate it.

At 6pm it’s all over (thank goodness), and my wife’s youngest son and his partner turn up at the Norfolk Showground to help us dismantle the stand and take it all back to the workshop in Hevingham. 

My wife has a trade stand at the Royal Norfolk Show (to promote her soft furnishings business) today (and tomorrow) and so I am helping out (or, rather, hindering).  We are up, tea/coffee drunk and out of the house by 7.30am, and my wife drives us to the Norfolk Showground. 

My wife has a busy day on her feet – chatting and handing out leaflets to potential (and not-so-potential) customers, while I plant myself on a chair at the back of the stand and watch her working (I do go and get some hot drinks at one point, so I’m not completely useless!). 

I wake with tremor in my left leg, which is a tad annoying.  I try to ignore it, but by lunchtime I’m fed up with it so I decide to increase the voltage on the left side.  I increase the voltage by several increments until I feel that the tremor is under control (so now the left side is receiving 2.50 volts, the right side remaining at 2.25 volts)

I decided not to turn my DBS off the last couple of nights because, although I get off to sleep okay, if I wake up during the night after the cannabis has worn off, then I wake with severe tremor and cannot get back to sleep again without switching my DBS on again (or taking some more cannabis) and at 3am or 4am it’s the last thing that I want to be doing.  If my voice gets any worse (and I can get an improvement by turning my DBS off at night) then I reserve the right to change my mind…