Month: March 2019

I have received several good topic suggestions for my weekly vlog this week, so I’m feeling confident that I can produce something worthwhile.  I decide to vlog about “drooling in Parkinson’s Disease” because it’s a symptom that my mum suffered with, and something that I dread suffering with.  Scripting is a doddle, but filming is a nightmare (again – 51 takes for a video of less than 5 minutes) because of my voice.  I’d like to think that I’m just being over-critical of myself, but when I hear myself (when my wife watches my video this evening) I’m appalled at how slurred and indistinct my voice sounds.  It’s just as well that I put subtitles on all of my videos, because I struggle to understand everything that I say, and I wrote the words!

I’m still slightly knackered from my exertions at the allotment yesterday, but not as bad as I had feared.   I really wanted to go to the allotment again today, but I get sidetracked…  My wife needs some assistance in her workshop, so I drive over to Hevingham to help her out.  I remove a load of waste cardboard tubes and packaging from her workshop and take it to the local recycling centre, and then clear out a load of fabric sample books that have been discontinued – I call Aylsham High School to see if they’d like to have them for their arts department (they would, so I drop them in to the school receptionist on my way back to Southrepps).  

I’m home in time to walk the dog and have a tidy-up downstairs before my wife gets back from work, and then we go to Lidl in North Walsham to grab a few groceries.  

I’ve been getting stuff done today!  I have been avoiding going to the allotment because it has been completely neglected for at least 6 months and I’ve been dreading seeing how overgrown everything is, but this afternoon I manage to motivate myself to go there and start sorting it out.   

I pick a bag of spinach and a several pounds of rhubarb, sort out the bamboo structure that my wife made for the runner beans to grow up, dig up the cabbage and broccoli plants that have long since gone to seed, dig over one of the vegetable beds and do a little weeding.   It tires me out, but I’m really pleased that I’ve managed to do something.  I drop in on our neighbours on my way back home for a much needed cup of tea, and give them half of the rhubarb, which they are very pleased with.  

When I get back home I cook the rest of the rhubarb, prepare some vegetables, stick a ready meal in the oven for our dinner, and light the fire before my wife gets home from work.  I feel that I have achieved something (for a change).

The weekend has caught up with me today, and I’m aching all over and don’t feel up to doing very much.  I resume writing a letter for my wife’s youngest son and his wife (about a car that they bought from a dealership that turned it to have finance outstanding on it) – I’m still waiting for more information from them so that I can be accurate about dates and sums of money, so there are a fair number of gaps, but I do manage to advance this task (although it is still far from complete).   I also chase up the energy company (who no longer supplies me) about the credit balance that they still (after 6 months) have failed to refund – they require sight of my closing statement, so I email that to them, but I’m not feeling confident that I’m any closer to achieving my goal – I’ll give it another week or so, and then contact the ombudsman!

I make good my promise to help my neighbour to sell his “surplus to requirements” cordless drills on eBay today, and spend the entire afternoon sitting in his kitchen, taking photographs, writing descriptions and starting auctions!  My neighbour is very grateful and keeps me supplied with cups of tea and custard cream biscuits, and (when I have finished) insists on buying me a beer in the Vernon Arms.  

I’m not feeling as exhausted as I expected to feel, following my car cleaning exploits of the last couple of days, and I feel that my lack of motivation isn’t quite as pronounced as it has been, so that’s good!  I take the dog for her afternoon walk, and then give the lounge and kitchen a quick clean and tidy before my wife gets home from work.

My wife wants to go to Riverside in Norwich to buy her mum a gift for Mothering Sunday (next week), and I want to wax and polish my car.  We manage to achieve both.  The weather is still bright and sunny, so I crack on with my car whilst my wife goes out for a run.  I finish polishing around 1.30pm (the car looks fab) and then we drive to Riverside (in my wife’s car – I don’t want to get my car dirty again after I’ve just expended so much energy cleaning it). 

I’m feeling absolutely exhausted, so spend much of our shopping trip sitting in the car whilst my wife does the shopping (I’d only be in the way, in any case).  

We drop in on my wife’s parents on the way home, getting back to Southrepps just as daylight is fading.  I take the dog for a brief walk while my wife sorts out our evening meal, and then the evening is spent sitting in front of the telly, watching Touch on Netflix.

It’s a beautiful, sunny Spring day here in Norfolk – perfect for washing the car (at long last).  My wife is working today (again) so, after walking the dog, I dig out the car washing stuff and get down to it.   It’s hard work (I haven’t washed it for about 6 months) and takes me a long time, but the end result is worth it.   I intended to wax and polish it as well, but I simply do not have the energy – maybe tomorrow…

I tidy away the car washing debris, walk the dog (again),  vacuum downstairs before my wife returns from work and then collapse onto the sofa in the living room, completely knackered!

I’m struggling with a subject for my weekly vlog today.  My wife’s suggestion (difficulties in diagnosis of Parkinson’s disease) has already been covered in two previous vlogs (#68 – Diagnosis Of Parkinson’s Disease, and #70 – Parkinson’s Disease Misdiagnosis), so there’s no point in doing that again.  I am torn between Ayurvedic medicine, and Psychedelics for Parkinson’s – I decide to research psychedelics, but after an hour or so of reading it becomes apparent that I’m struggling to find enough information to put together a coherent 4 or 5 minute video.  Okay, plan B, Ayurvedic medicine…  An hour later, I am losing the will to live – I’m still struggling to write a script for my video, and I actually consider just not producing a video this week.  The option of not doing a vlog this week seems to relieve the pressure that I was feeling, and I write a reasonable script that I think is just about adequate.  Filming is an absolute nightmare (because I’m unhappy with my voice) and I end up with 50 takes for a 5 minute video.  I pack all of the equipment away while downloading the video to my MacBook for editing, only to discover (halfway through the edit) that I hadn’t pressed the “record” button for the first half of the script.   So… I get the lights, tripod and teleprompter stand down from upstairs (again), set it all up in the lounge (again) and record the first half of the script.  All of the delays mean that I’m still editing the video when my wife arrives home from work, which isn’t exactly ideal.  Luckily I have a very understanding wife, who just cracks on with cooking our evening meal and leaves me alone to finish my video.

I increased my dosage of thiamine today, increasing it to 3 grams daily, divided into 2 doses.   I’ll increase it by another gram next week if I feel no adverse effects.  I go to my neighbour’s house this afternoon to keep my promise to help him list several cordless drills on eBay that are surplus to his requirements, but eBay doesn’t like the fact that my neighbour has never sold anything through his account before, and requires verification before proceeding.  The short story is that eBay screwed up the verification process and locked out my neighbour’s account for the next 24 hours.  We gave up for the day and retired to the Vernon Arms for a beer and a chat instead.

I feel that I’ve actually earned my keep today.  I dropped in on my neighbours today to deliver a wedding anniversary card to them (they were celebrating 43 years of marriage), and was asked if I knew how to transfer all of the information from an iPhone 5C to a newer iPhone (which, of course, I did).  I performed the task for them and then showed them how to put the old iPhone on eBay to sell it.  This prompted the production of a box full of cordless drills that were surplus to requirements, and a request to help them list these items on eBay also.  The cordless drills are exactly what my wife wants for her soft furnishings business, so I accepted one of them (which doesn’t appear to have ever been used) in return for spending some time listing the rest of them on eBay tomorrow afternoon.  My wife was delighted, my neighbours were very grateful, so that means that all parties are happy with the deal – result!

I’m unmotivated (again) and spend the day trying to persuade myself to get up off my backside and do something!  

I succeed, eventually, and make some more thiamine hydrochloride capsules (which I’m about to run out of) so that I can continue following the vitamin B1 high dosage therapy.  Then I split a few logs, fill the log basket (not that we need a fire tonight, unless the temperature drops significantly) and run the vacuum cleaner around downstairs.

Monday is becoming recovery day, which must mean that I’m doing more at the weekend (which is still not very much, but comparatively…).  

The only thing I manage to do (aside from walking the dog) is drive to my doctor’s surgery in Aldborough to pick up my prescription.  Other than that, my day is spent sitting on my backside in the lounge, reading The Metro online and perusing Twitter and Facebook – riveting stuff!

I’m feeling a little concerned that I haven’t been to check on the boat for absolutely ages, and I really need to take the (now fully charged) leisure battery to refit, and make sure the main battery hasn’t gone flat.  My wife and I load the battery into my car and we drive to Wayford Bridge where our boat is moored.   My wife does a little cleaning while I refit the leisure battery and run the engine (the main battery isn’t flat, thank goodness). 

We return to Southrepps feeling much happier about things.   When we get home my wife washes her car (I still haven’t washed mine!) while I walk the dog, sort out some kindling and light the fire.

My wife is going to work today, so I intend to wash my car.  It’s blowing a gale out there this morning, though, and the weather forecast is for rain this afternoon, so I change my mind about that.  I spend the day posting links to my latest vlog on Twitter and Instagram, and responding to a number of emails and comments on Facebook. 

This afternoon I split a few logs and fill the log basket, walk the dog, light the fire and then vacuum downstairs – trying (and almost succeeding) to make the house tidy, warm and welcoming for when my wife arrives home from work.

We are babysitting our youngest granddaughter this evening, so I’m under a little more pressure than usual to get my weekly vlog finished.  I’m talking about the BBC documentary about the Parkinson’s drug trial this week, so that cuts down on the time required for research – it’s still nice and fresh in my mind.  

I finish the editing just my wife arrives home from work, and take my laptop with me when we leave for Hevingham.  My wife entertains our granddaughter while I get on with uploading my video to my YouTube channel, publishing it and posting links on Facebook and a number of online Parkinson’s forums.  

Granddaughter in bed, laptop put away, we watch After Life and Homeland on Netflix until we are relieved of our duties.

I don’t do very much (again) today, but it’s not down to a lack of motivation (for a change).  I was preparing to wash my (extremely dirty) car this afternoon, and was actually in the process of gathering together the necessary items required to achieve this (bucket, car shampoo, sponge… you get the picture) when there is a knock at the front door.   My eldest nephew has called round to see me, armed with a couple of bottles of beer.  We drink tea, followed by beer, and catch up with each other’s lives.  By the time he departs it is time for the dog’s afternoon walk, and the opportunity for car cleaning has passed me by.  Just as well, really, because my neighbour asks me to run him over to Trunch to collect his car from the garage – I wouldn’t have been very happy driving down muddy country lanes in a gleaming, freshly cleaned car!

I’m not sure what has changed since yesterday, but I manage to actually do something useful today.  It takes me most of the day to work up to it but, after returning from the afternoon dog walk, I decide to fit the bathroom mirror that has been sitting on the landing for longer than I care to remember.  I manage to locate all of the necessary tools (without losing my rag), mark and drill the required mounting holes in the wall, mount the mirror and connect it to the mains supply.  My wife arrives home as I’m tidying away the tools and vacuuming up the mess, and she is delighted – not because the mirror is fitted (although she’s pleased about that as well), but because I have felt able to do the job of my own volition.  Is this because of my thiamine high dosage therapy?  Who knows… I will be monitoring the situation!

Motivation is still in short supply, and today passes in a remarkably similar fashion to yesterday (i.e. I do very little).  I bump into one of our neighbours when I take the dog for her afternoon walk, and am invited in for a cuppa and a chat, which is a nicer way to pass an hour than sitting on the sofa at home on my own.

My wife and I are babysitting our youngest granddaughter for a couple of hours this evening, so I drive over to Hevingham to join my wife at her youngest son’s house, where we have some dinner and are entertained by our granddaughter.  It’s after 9pm by the time we get home, so we grab an early night.

I don’t do anything of note today, and the day slips by in a blur.

When my wife arrives home from work and asks me about my day, I don’t have anything to tell her.  Of course, I take the dog out for her walks, but other than that…  I find it difficult to even put my finger on what I have been doing all day.  I guess the majority of the time has been taken up with reading the news on The Metro website and responding to a few comments on social media – I do know that I have been sat on my backside on the sofa all day, without the slightest inclination to move.  I suppose I used up my motivation quota on Saturday.

My youngest nephew’s partner is running her first half-marathon today, and she’s running it in aid of Parkinson’s UK.  Both my wife and I have sponsored her (and it’s not too late to do so, if you feel so inclined – just click here).  She posted some pictures on Instagram this morning which included the one below, and for some reason this made me extremely emotional (and my wife burst into tears when I showed it to her, so it wasn’t just me being a big softie).  Thanks for your efforts, Jess, you did us proud!

We feel the need to get out of the house for a couple of hours, so we drive to Dunelm Mills on the outskirts of Norwich in search of some storage baskets for the bathroom.  We fail to find anything that we like enough to buy, so we pop into Sainsbury’s to get something for our dinner this evening and then head back to Southrepps.

My wife wants to make some more progress in getting the bathroom finished, and (for a change) I’m feeling mentally able to assist.

So, my wife clears all of the bathroom paraphernalia out of the way and finds all of the tools and bits and pieces that I need, while I finish installing the shower and fit the rail to hold the shower curtain.  It takes me far, far longer to do these simple jobs than it should, but at least I am able to do them, and I’m satisfied with the final result.

My wife clears up the mess I’ve made, while I light the fire and sit in front of it – recovering from my exertions!

This evening my wife and I settle down in front of the telly to watch (on YouTube) the second part of the BBC documentary about GDNF, called “The Parkinson’s Drug Trial: A Miracle Cure?“.  I haven’t had time to preview it before watching it with my wife this week, because I have been preparing my weekly vlog today, so I’m unprepared for the emotional rollercoaster this time.

It’s very hard to watch.  It’s impossible to watch the participants without feeling every thrill (and, conversely, every disappointment) that they encountered – both my wife and I developed leaky eyes several times.  The trial didn’t reach its target of the GDNF treatment being over 20% more effective than the placebo, and the shock of this was evident on everybody’s faces – participants and clinicians alike.  The hardest part for me, though, was that Tom Isaacs, who went through so much in pursuit of his dream (and who, somehow, managed to remain so positive throughout) should die soon after the trial ended.

Tom was an inspiration to all of us, and the Parkinson’s community is so much poorer without him.  Life is cruel sometimes.

I have received a Facebook message from a journalist working for a UK magazine called Vapouround CBD.  She’s researching the effects of CBD and THC on the symptoms of Parkinson’s Disease, and she came across my YouTube videos so wanted to interview me about my experiences.  I send her a message agreeing to an interview and giving her my phone number.  This afternoon she calls me and we spend 30 minutes chatting about CBD, THC and the government’s (intentionally) bodged legalisation of medicinal cannabis – I look forward to reading the finished article.

Day two of my thiamine high dosage therapy – the powder definitely tastes better when mixed with some orange juice!

I ordered some electronic scales on eBay at the weekend, so that I can accurately measure the thiamine hydrochloride powder that I am going to start taking (see my YouTube video about thiamine hydrochloride high dosage therapy).  The scales arrive in the post this morning, so I set about trying to fill some capsules with the powder, and fail miserably!  The powder is so fine that it doesn’t flow through the tiny funnel that I use to fill capsules, so I bite the bullet, mix a gram of the powder with a little water and knock it back.   It’s horribly bitter (as I had read) but I think it’s bearable – next time I’ll mix it with some fruit juice rather than water, so that should be a little more palatable.

I fill out a questionnaire document downloaded from the Parkinson’s Thiamine HCL Facebook group ready to send off to Doctor Costantini’s team in Italy.  The questionnaire catalogs my current symptoms and their severity, so that they can be compared to establish if the treatment has improved them or if my condition has continued to deteriorate.  I also need to provide the team with some videos, which I intend to do at the weekend.

So… treatment with high doses of thiamine has started today, 6th March 2019, with a single dose of 1 gram of thiamine – tomorrow I will take 1 gram in the morning and 1 gram in the afternoon, and stick with this dose for two weeks before increasing it.

Someone posts a link (in one of the Parkinson’s Disease Facebook groups) to a YouTube video of last week’s BBC documentary “The Parkinson’s Drug Trial: A Miracle Cure?“, which I haven’t yet seen (we don’t have a television licence).  I intended to wait until this evening to watch it with my wife, whom I know is also keen to see it, but I decide that I need to know what I’m letting myself in for before I watch it with anyone else.  I know that my wife will be annoyed with me, but I’m glad that I did – it is difficult watching for a person with PD, seeing the hope and desperation in the faces of the patients who took place in the trial, and it makes me feel very emotional.   The same hope and desperation that made me consider Deep Brain Stimulation to give me back some quality of life.  I have to say that these patients are far, far braver than I.  My brain operation was regarded as “routine” by the team that performed it, but this trial involved experimental brain surgery involving the implantation of an experimental drug delivery system to delivery an experimental drug – and half of the participants would receive a placebo.  That required hope and desperation in huge measures – kudos to all of them!

I’m feeling under pressure to get stuff done, and yet I can’t get myself motivated to get up off my backside and actually do something.  The pressure is self-inflicted, but that doesn’t make it any easier.   I address some minor tasks that I can accomplish without having to move from my seat on the sofa – replying to a number of YouTube and Facebook comments, sending a text message to an old friend of mine who texted me yesterday and writing an email to a Facebook friend of mine who sent me a long message on Saturday.

I do get off my butt to take the dog out for her walks, and I also run the vacuum cleaner around downstairs, split a few logs, fill the log basket and light the fire.

I’m hoping to clean my car today – I’ve been psyching myself up for it all week, but it’s raining steadily this morning, and shows no sign of abating, so it will have to wait for another day.

We are invited to join my wife’s youngest son (and his wife, and our youngest granddaughter) at Mayhem (a soft play area) in Marsham.  It seems a reasonable way to pass a rainy Sunday, so my wife takes the dog for a quick soaking and then we drive over to Marsham.  My wife gets landed with the job of keeping an eye on our intrepid granddaughter, while the rest of us sit around chatting and drinking tea and coffee.  By the time both my wife and our granddaughter have expended their excess energy and we have returned to Southrepps, it’s mid-afternoon.  It’s cold, windy and still raining, so my wife takes the dog for another soaking while I split a few logs and get the fire going.

My wellies are knackered!  I can’t complain – I’ve had them for about 15 years, but the uppers of both boots have perished and are now letting my feet get wet.  Today’s task is to go to Sports Direct on the Longwater trading estate and purchase a new pair, so my wife and I drive to the outskirts of Norwich (having established, via phone, that Sports Direct have got size 13 wellies in stock).  I’m in and out of the shop (with new wellies in hand) within 5 minutes – proper man-shopping!

We drop in to Worstead to have a cuppa and a chin-wag with my wife’s mother on our way back to Southrepps, and that’s the day taken care of, really.  It’s dusk by the time we get home – my wife takes the dog out for a walk while I get some logs in and light the fire.

A typical Friday.  After drinking my two mugs of tea, my nutriblast, walking the dog and listening to PopMaster, I get on with the business of producing my weekly vlog.

I’m still struggling with a weak and slurred voice, so I switch my neurostimulator over to use group “B” settings, but I’m still unhappy with the way that I sound.  I have been banging on about my voice for ages and ages, and I seemed to be getting some benefit from switching over the settings on my neurostimulator (measured by the number of “takes” that I had when making a 4 or 5 minute video).  An acceptable number is about thirty-odd takes, but this week I’m in the forties, and this week’s video is shorter than usual (less than three minutes).

Today I’m trying(!) to be helpful – my wife is replacing the foam and re-upholstering the seats from a Volkswagen camper van, so (after taking the dog for a quick walk) I drive over to her workshop in Hevingham, and set about removing the old material and foam.  I then get roped into helping to glue the new foam into place and fit the covers that my wife has made.  We make good progress and have finished two of the three seats by the time I have to leave (to take the dog out again).

The dog is pleased to see me (she’s hardly ever left alone for more than a couple of hours).  After another quick walk, I get some logs in from the back garden and light the fire so that our cottage is warm and welcoming when my wife gets home.

Today is a bit of a write-off.   I intended to spend the day working on a project plan for my wife’s soft furnishings business, but I’m struggling to motivate myself, so spend an inordinate amount of time catching up on the news on The Metro online.

I told my wife that I’d go to Lidl in North Walsham and do the weekly grocery shop, and then promptly forgot that I’d done so.  I remember, with panic, around 4pm, hastily walk the dog and then drive to North Walsham where (thankfully) the supermarket is almost deserted and I’m able to whizz around the aisles and get what is required in record time.  I arrive back in Southrepps just as my wife arrives home from work!