Author: Ian

My wife is working today – she has promised a customer that she will deliver her curtains and loose covers before Easter, and now she’s panicking that she won’t finish them on time.  I decide to go to Wayford Bridge to check on our boat – I worry about it if I haven’t been to check on it for a while, and its several weeks since I last went there.  Everything appears to be okay (at least, she’s still afloat!).  I start the engine and run it for half an hour or so to top up the batteries, and then head back to Southrepps (via Lidl in North Walsham for a couple of bottles of Hobgoblin). 

The rest of my day is spent watching more live music videos on YouTube – Cyndi Lauper (again) and The Pretenders.

I’m still feeling like lazing around, so that’s what I do today (mostly).  

The dog gets walked (twice), I post links to my latest vlog on Facebook and a number of online Parkinson’s disease forums, the washing gets hung out on the line in the back garden (and brought back inside later on, when it has dried) and I make up some more thiamine capsules for next week.  

Aside from that, I spend the rest of the day catching up on the news (reading the Metro online) and watching a couple of live concerts on YouTube (Cyndi Lauper, live in Paris; and Todd Rundgren, Liars tour).

I can hardly believe that I’m still suffering with this damn cold!  I thought I was over the worst of it last Friday, but today I’m feeling much worse than I was last week.  I’m not feeling like doing anything, and that’s reflected in the progress that I’m making with the script for this week’s vlog – I like to finish writing by 2pm at the very latest, but today it’s almost 4pm before I’m ready to begin filming myself.  Luckily my voice isn’t playing me up as much as usual (or I’m becoming less fussy) so I manage to catch up with myself a little bit.  My wife arrives home as I’m uploading the finished video to my YouTube channel, so I leave the posting of links to social media until tomorrow.

It’s the second group speech therapy session this morning, so I surprise the dog by taking her for an early walk and then I drive to Norwich Community Hospital in time for the start of the session at 10am.  We discuss breathing techniques to help with voice projection, and we sit around the table making silly noises and feeling self-conscious.  I’m sure that these techniques will prove useful in the not-too-distant future, especially if I make myself do my homework (which involves making silly noises for 20 minutes a day, in the privacy of my own home – the dog is going to think I’ve lost the plot!).

The effects of my cold are much worse first thing in the morning, so I sit on the sofa drinking tea and Nutriblast, reading the Metro online, listening to PopMaster and generally taking it easy until I feel up to taking the dog for her morning stroll. 

By the time the afternoon rolls around I’m feeling like I could do something more than sit on my backside, so I dig out some plant pots and a bag of compost and sow a load of vegetable seeds.  Then I wander down to our allotment and finish off digging over the vegetable bed that I started on Monday.   I spend less than half an hour working, but I’m completely knackered when I get back home.   Predictably, the dog wants me to take her for another walk (which I’m not feeling up to, but she must not be denied) so I take her over to the field by the village hall and let her run around while I sit down and watch. 

I chuck a ready meal into the oven for our dinner, and get the washing off the line while it’s cooking (the ready meals, that is – not the washing!).

I’m still suffering with my cold (phase two), so I don’t feel very inclined to do anything today.  I drop in on my neighbour after walking the dog this morning, and have a cup of tea and a chat, during which we discuss the success of the recent eBay auctions that I arranged for them recently.  The upshot is that I get roped in to sell some more of their unwanted items, so I stay there much longer than planned, taking photos and creating listings on eBay and Gumtree. 

The dog drags me around the field for my afternoon walk, and then I slump on the sofa in the lounge until my wife returns from work.

My cold has entered phase two, which involves a nose (of the streaming variety) and a cough (of the painful, bronchial variety).  I’m feeling thoroughly miserable and sorry for myself, so this morning I stay in the house (after a quick stroll around the village hall field with the dog) and surf the ‘net.  

This afternoon I combine another dog walk with a visit to the allotment.  I pick a bag of spinach, and dig over half a vegetable bed while I’m there.  I’m invited in for a cuppa by our neighbour (who sees me stumbling back home from the allotment, sweaty and exhausted) and we sit outside in the sunshine drinking tea and chatting for half an hour or so. 

My cough really kicks off this evening, and my wife must be seriously cheesed off by my hacking and sniffing.  A whisky (Dalwhinnie 15 year old single malt) helps, as does a swig of cough medicine.

the weather is still rubbish in Norfolk today – grey, damp and showery. It’s not conducive to outdoor activities, so I stay indoors (my wife assumes dog walking duties for the day).  

I’m not feeling great (this damn cold doesn’t want to go away) so I vegetate on the sofa and research stock management software for my wife’s soft furnishings business, and then search eBay to find some props for her stand at the Norfolk Show in a couple of months time.

I try to keep myself busy while my wife is at work (again).  I have an urge to go to the allotment and do some more weeding, but the weather isn’t great – there’s a fine drizzle in the air, so the weeds can wait.  I do (of course) venture out for dog walking purposes, but even the dog isn’t keen!

I make up some more thiamine capsules (I’m still taking 4 grams per day, which I intend to increase to 5 grams next week), tidy the kitchen, do some washing-up and then vacuum downstairs.  

I’m on the road to recovery – I’m still feeling lousy, but definitely a huge amount less lousy than I was feeling yesterday – maybe the prawn vindaloo that I ate last night had something to do with it; it certainly cleared the sinuses! 

It’s Friday, so it’s vlog day, which means my day is pretty much the same as every other Friday – researching, scripting, filming (and cursing my voice), editing and publishing my video.  I post links to my vlog on Facebook and several online Parkinson’s Disease forums, and I’m done for the day – just as my wife arrives home from work, laden with bags of groceries, which is pretty good timing.

I have a group speech therapy appointment at Norwich Community hospital at 10am today, so I’m out of the house before my wife (for a change) and driving to Norwich.  There are only four of us at the group session, and two of the other attendees were in a much worse state than me, so I’m grateful that my symptoms are relatively mild – I don’t know how I’d cope if my dyskinesia was as bad as this other bloke’s, he was almost wriggling out of his chair!  I don’t really get anything out of the group session (apart from the gratitude, as mentioned) but I’ll continue attending for the full course – I’m sure that I’ll find some of the information useful/beneficial at some stage.  

My brother calls in on me this afternoon – I’ve been nagging him (for over 6 months) to provide me with some documentation to enable me to make progress with finalising our mother’s estate, and today he brings me the required proof of identify, which I put straight in the post.

This evening my wife and I join our neighbours (and several friends) at Labone Indian restaurant in North Walsham for their Indian buffet, which is both delicious and a rare social outing for us. 

I’m sick and grumpy today – feeling even more under the weather than I felt yesterday, and very tired because I didn’t get very much sleep last night.  I spend most of the day sitting on the sofa in our lounge, surfing the ‘net.  

This afternoon I feel a little better (I took a couple of paracetamol) and walk down to the allotment to pick a bag of spinach (to go in our daily nutriblast).  While I’m there, I finish hoeing the vegetable bed that I started on Monday, which is something that I hadn’t expected to do today!

I walk the dog (a brief walk, because it starts raining!) and then run the vacuum cleaner around downstairs before my wife arrives home from work.

I have a speech therapy appointment in Norwich this morning.  I’m feeling very much “under the weather”, but it’s a bit short notice to cancel, so I take the dog for a quick walk and then drive to the hospital for my appointment.  The appointment is basically an assessment of my voice prior to my attendance of a speech therapy group, which starts this week (on Thursday), so I have to fill out a few forms about the concerns I have about my speech, and also have the volume of my voice measured.  Half an hour later, I’m back in the car, driving back to Southrepps. 

I pop in to see our neighbour for a cuppa and a chat, take the dog for another walk, and then retire to the sofa in our lounge to read the Metro online and recuperate.

I have come down with a nasty sore throat, banging headache and cold this morning, so I’m feeling lousy and am unlikely to achieve very much today.   The morning is spent answering a couple of emails, replying to a few comments on YouTube, and posting links to my latest vlog on Twitter and Instagram. 

It’s another beautiful Spring day, and I consider walking to the allotment to do some more weeding, but I’m still not feeling great and walking the dog is about all I can manage this afternoon.  The fact that I actually considered it is hugely significant, though!

It’s Mothering Sunday today in the UK, so we have a busy day.  First stop is the Amazona Zoo in Cromer, where we meet up with my wife’s youngest son, his wife and our youngest granddaughter.  It’s a beautiful sunny Spring day, and we spend a very pleasant couple of hours wandering around and seeing the animals.  

From Cromer we drive to my wife’s parent’s house in Worstead to give her mother her card and presents.  We stay for cups of tea and a chat before heading over to my wife’s eldest son’s house in Hevingham for a lovely roast dinner.  

It’s almost 10pm when we get home so we round the day off with a beer and an episode of Touch on Netflix.

My wife is working again today, so I concentrate on making myself busy in her absence.  

I hang out the washing, make up some more thiamine capsules for next week (I’m now taking 4 grams per day with no noticeable improvement in symptoms as yet – unless my recent improvements in motivation can be attributed to it), and then wander up to the allotment (while taking the dog for her walk).  I pick several pounds of rhubarb for distribution to various family members that like that sort of thing, and then hoe approximately half of the vegetable bed that I dug over earlier in the week.  When I get back home I vacuum downstairs and then get the washing in from the washing line.  

I haven’t actually done all that much, but I do feel a sense of achievement that comes from doing SOMETHING!

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!

I am feeling very sad today – Mark Hollis, the lead singer and songwriter of 80s group, Talk Talk, has died at the age of just 64.   It seems strange to be grieving for someone that I have never even met, but his music was the soundtrack to my life through my 20s and 30s and is still regularly played at home.  I find myself reading all of the comments that people have posted on The Guardian article announcing his passing, and I’m certainly not alone in feeling the way that I do.

I try to continue with learning how to use the ClickUp project management software that I want to use for my wife’s soft furnishings business, but my heart really isn’t in it today.  I play Mark Hollis tunes on the sound system, immersing myself in the commercial sounds of The Colour Of Spring and the critically acclaimed (but commercially unsuccessful) Spirit Of Eden and Laughing Stock, and ending with his solo album – beautifully melancholy, yet somehow uplifting.  RIP Mark Hollis – you live on through your incredible music.

Today is largely spent on trying to get my head around some project management software.   I’m sure that the use interface is very intuitive, but I think that I have far less intuition than I used to have.   I’m very aware that I am physically much slower than I used to be, and I think that my thought processes are similarly sluggish as Parkinson’s Disease proceeds to trash my brain.  It has certainly affected my fluidity of speech – in my pre-Parkinson’s days I would have been able to present my videos without having to have a script, but there’s absolutely no way that I could do so now.

I do manage to get a grip on the terminology used in the online documentation for the ClickUp project management package, but I had hoped to make more progress than I have!

I continue my online search for a simple project management software package for my wife’s soft furnishings business, and find one that appears to fit the bill (ClickUp).  I sign up for a free account and then spend some time playing with the software to familiarise myself with it.  I resolve to search out online documentation tomorrow, when I have the house to myself and can browse uninterrupted.

I order myself some thiamine hydrochloride online (I intend to try following the protocol that I covered in this week’s vlog, because it seems straightforward and relatively risk-free) and then fill the log basket, clean the glass in the woodburner’s doors and light the fire (because it’s feeling a little chilly this evening, in spite of the beautiful, sunny and mild day we have had).

My wife is feeling the pressure of work again, and so decides to go to work today.  While I await her return, I spend my time looking for some suitable (free) project management software so that we can plan her workload more effectively.  It’s a slow process because there are so many packages that appear to offer what we require, but are simply too complicated for a novice user (my wife) to pick up and use effectively without a steep learning curve – we need simple software!

We are babysitting both of our granddaughters tonight whilst their parents attend an event in Aylsham, so my wife is home at a reasonable hour, and we have an early dinner before setting off to Hevingham for the evening.

I drive to North Walsham first thing this morning to do some grocery shopping in Lidl (one less thing for my wife to worry about).

I’m back home again just after 10am, so take the dog for her morning walk, listen to PopMaster and then get stuck into researching and scripting my weekly vlog.

I change my neurostimulator settings to group “B” (because I think that my voice is slightly clearer on these settings) and film myself without too much trouble.  I switch back to group “A” settings when I start editing my video (slightly less tremor with group “A”) and manage to finish the edit, create the video and upload it to my YouTube channel by the time my wife gets in from work – I publish it after we have eaten dinner.

I resume my attempt to write the letter (on behalf of my step-daughter-in-law) that I started researching yesterday – I start writing it but, in doing so, raise more questions that I need my step-daughter-in-law to answer.  Task shelved until I have some answers!

My neighbour calls around to ask me to help him to fit a blinds to a Velux window, so the following 2 or 3 hours are spent carrying out this simple 10 minute job (nothing is ever as simple as it looks!).  My neighbour persuades me to join him for a pint of Abbot Ale in the Vernon Arms as a thank you for my help (I wasn’t really much help, but who am I to argue?).

I am writing a letter for my step-daughter-in-law today, regarding a car that she purchased from a dealer that turned out to have finance outstanding on it.  I want to ensure that what I write is factually correct, so end up spending most of the day researching (and trying to understand) the Consumer Rights Act of 2015.  Inevitably I end up more confused than before I started, and don’t actually make any headway with composing the letter – will try again tomorrow!

Aside from my internet researching, I do the usual dog walks, bringing in logs for the fire, and running the vacuum cleaner around downstairs.  I bung a ready meal in the oven for our evening meal, and my wife and I watch a couple of episodes of Designated Survivor on Netflix before grabbing an early night.

I’m being taken out to lunch by our visiting friends today, so spend some time this morning looking at local pub menus online, trying to choose somewhere decent for us to go.  The choice (after much browsing) is the Vernon Arms, which has excellent food and beer, reasonable prices and the advantage of being extremely local!

We enjoy food and a couple of beers, before retiring to our cottage for cups of tea, and then taking the dogs for a walk around the village hall field.

Once our friends have departed, I bring some logs in from the back garden, light the fire and vacuum downstairs.

I have a whole stack of comments on YouTube that I need to respond to – I seem to have let them pile up over the last couple of weeks, so I spend the morning (and part of the afternoon) clearing the backlog.

I have a bit of a tidy-up in the back garden – the debris from where our delivery of logs was dumped (prior to being stacked against the back wall) is getting trodden into the house every time I fill the log basket, so I sweep it up (and then fill the log basket, without making any mess!).

The dog let’s me know that I’m late taking her for her afternoon walk (so I take her, of course), and then light the fire when we return.

Our friends (who are visiting Norfolk for a few days) are coming to dinner this evening, so this morning my wife and I drive to Lidl in North Walsham to buy food, beer and wine.   My wife knocks up a spaghetti Bolognese, and a Key Lime Pie for dessert, while I split logs, fill the log basket, run the vacuum cleaner around downstairs and then light the fire.

Our friends arrive with their dog (a three year old pointer) and we take her (and our dog) to the field by the village hall to burn off some energy.  We return home as daylight is fading, and have a very enjoyable evening, eating, drinking and chatting (although my voice deteriorates markedly as the evening progresses and I start to get tired).

Some good friends of ours are visiting Norfolk for a few days, so we are expecting them to drop in to see us at some stage this afternoon.   My wife and her two sons are joining her father for a portion of the Winter Poppyline walk that he is doing today, so the two events are almost guaranteed to clash.   This morning and early afternoon are spent cleaning and tidying in preparation for our visitors, and then I drive my wife and her sons over to Sheringham (where they are meeting up with my wife’s father).  I return to Southrepps to find that our friends have arrived (as predicted) and are esconced in the Vernon Arms.  I join them for a pint or two of Abbot Ale and a chat, and then they drive on to find their accommodation near Fakenham.

The walkers arrive back at our cottage just after 8pm, having walked 12 miles (her father, who is made of sterner stuff, has already walked 36 miles and continues walking a further 14 miles!).

I receive a phone call from the DBS speech therapist that I saw at the NHNN yesterday – he tells me that he has discussed my speech problems with his colleagues, and they think that adjusting the “pulse width” of the stimulation that I receive from my neurostimulator could be beneficial.

There is just one problem – the neurostimulator that I have implanted does not have a “pulse width” setting.  I feel my heart sinking, but then he tells me that Medtronic (the company that manufactured my DBS hardware) can provide my clinicians with a code that will enable this setting on my neurostimulator, so that’s a result!

Apparently it takes one to two months for them to get this code (which seems ridiculous to me), so I won’t be having any adjustments just yet, and I was really hoping that I’d be returning to the NHNN sooner rather than later…

I’m off to the NHNN today for an appointment with my London neurologist, so my wife drops the dog off at her youngest son’s house in Hevingham first thing this morning and we head off to Gunton station to catch the 10.07am train to London.

We arrive in plenty of time, intending to go to see Martha Orbach’s “White Out” exhibition prior to my appointment, but ending up sweaty and exhausted after trying to find it, only to realise that we were in the wrong building!  Okay, appointment first and then exhibition…

I get the customary 15 minute audience with my neurologist who, whilst being very personable and vastly more educated than I, doesn’t really address any of the issues that I’m currently experiencing with my DBS.  She does, however, get me an audience with one of the speech therapists who reckons that my speech problems are due to stimulation rather than disease progression, which is a major comfort to me.  He says that he will schedule an entire afternoon appointment with himself, a DBS nurse and a neurologist to give my DBS programming a thorough shakedown to see if they can find settings that don’t make me sound as if I have recently drunk a bottle of whisky.  This is what I was hoping was going to happen today, and I had already tried to book an appointment with the DBS nurse for today but, as is usual (unfortunately), the patient voice isn’t given due consideration, so I was refused an appointment on the (incorrect) basis that I was seeing my neurologist, and if any adjustments were deemed necessary then she would make them.  I’m sure that it is of little consequence to them, but another appointment means another day that my wife has to take off work, and another £100 in travelling expenses.

After leaving the NHNN we catch the tube to Warren Street and get to see Martha’s exhibition, which is brilliant – I recognise myself in some of the images, and some of the words that she used to accompany her artwork were mine also, so I felt extremely honoured.

We head off to the Blues Bar (via McDonalds) to listen to some live music and sup a beer or three whilst killing time until our train home.

Valentine’s Day arrives a day early in the Frizell household, because tomorrow is going to be spent travelling to London and back for an appointment with my neurologist.  So, while my wife is busily slaving away in her workshop, I go to North Walsham to do some shopping.  I buy food, bubbly (Seaview – Australian “champagne”), beer (Hobgoblin), flowers (red roses) and chocolates (salted caramel truffles) for consumption this evening.

When I get back to Southrepps, I get the logs in from the back garden, clean the hearth, light the fire, vacuum downstairs and walk the dog before preparing a (ready) meal for my wife and I.

I have a fairly busy day today.  First up is my physiotherapy appointment at North Walsham cottage hospital.  I surprise myself by cycling for almost an hour on the motorised exercise bike – my legs felt weak and tight when I started cycling, and I seriously didn’t expect to manage half an hour, but my muscles loosened up after about 15 minutes.  I certainly wasn’t able to sustain the rate of exercise that I managed last week, but I’m very pleased that I managed that duration.

After my physio, I drop my eBay parcel off with the courier and then drive to Tesco in Sprowston where I buy my wife a gift and card for Valentine’s Day, and fill the fuel tank of my car.

I arrive back in Southrepps mid-afternoon, take the dog for her second walk of the day, fill the log basket and light the fire.

I’m going to finish the job that I started on Saturday this morning – making sure that the prices in my wife’s fabric sample books are all up to date.  I take the dog for her morning walk, guzzle my mugs of tea, listen to PopMaster and then drive over to my wife’s workshop in Hevingham.  I finish updating the fabric prices, and then load all of the sample books into my wife’s car, in preparation for her appointments tomorrow.

It’s mid-afternoon when I arrive back in Southrepps, so I split some logs, fill the log basket and light the fire before taking the dog for her second walk of the day.  I sold another sizeable item on eBay last night, so I book a courier for tomorrow, and get it packaged up and ready to go.

Sunday… A day of rest.  Not.

My wife is in full housework mode today – trying to catch up with all of the tasks that she would have done yesterday (had she not been at work), so I keep my head down and stay out of the way while she rampages around the house like a miniature tornado.

I want to give her car a quick wash (she likes it to be clean for when she visits prospective clients, and she has two or three appointments booked for the coming week) but it has been raining steadily all day.  It eventually stops around mid-afternoon, so I venture outside armed with a bucket of soapy water and give it a quick once-over.  I also split a few logs, fill the log basket and light the fire.

I publish this week’s vlog this morning, and post links to it on Facebook before driving over to Hevingham to give my wife a helping hand.  She is working today so that she can, with a clear conscience, accompany me to my neurologist appointment in London this coming Thursday.  She is a victim of her own success, and is currently in a bit of a panic because of the amount of work she has in the pipeline – her soft furnishings business (of which she is the sole employee) is currently booking work for August!  I’m going to go through all of her fabric sample books to check that the process are up to date (revised price lists arrived through the post last month).  I manage to get about halfway through before having to return to Southrepps to take the dog for her afternoon walk, get the logs in and light the fire.

My day is fragmented by a call from my eldest nephew whilst I’m still writing the script for this week’s vlog, wanting me to accompany him to the Vernon Arms for a swift pint of Abbot Ale.  It’s been a while since I’ve seen him, so I drop everything and we go over the road for a beer.  Whilst we are drinking, my nephew persuades me to join him and his girlfriend to see Pirate Joe and the Foreign Locals at the Butcher Bhoy pub in Norwich this evening.  He leaves me to work on my vlog, which I just about manage to finish by the time he returns to collect me for the evening’s entertainment.  It’s getting on for midnight when I get home, and I decide to leave publishing my video until the morning (which may, or may not, have had something to do with the three pints of Guinness that I had imbibed).

Another day of minimal motivation, and I really struggle to get up off my backside to do anything (and there’s plenty that I could be doing).  The dog gets me out of the house this morning for a quick stumble around the field by the village hall, but it’s trying to rain and I’m glad to get back indoors where it’s warm and dry.

The bulk of my day is spent preparing a submission about my use of medicinal cannabis to the Department of Health and Social Care for their inquiry into medicinal cannabis – not a major task by any stretch of the imagination, but it takes me an inordinate amount of time to get all of my thoughts (and facts) into a document that can be uploaded to the Parliament website.

My afternoon stroll with the dog precedes some kindling and log splitting, and I then light the fire and sit in front of it, awaiting the return of my wife.

I’m really tired today – probably due to my physiotherapy session yesterday.   I’m not interested in doing anything, not even getting the logs in from the back garden so that I can light the fire (I’m feeling the cold, even though it’s nowhere near as chilly as it has been for the last week) – it’s easier to stick a sweater on and heat up some soup, so that’s what I do.  I eventually motivate myself to take the dog for a walk (she insisted!), and I fill the log basket when we return.

I drop in on our neighbour for a chat and a cup of tea, and get persuaded (I’m easily persuaded) to join her and her husband over at the Vernon Arms for an early evening pint of Abbot Ale.

I’m determined to improve my performance at physiotherapy this week – I’m certainly feeling less muscular discomfort than I was last Tuesday.  I aim to cycle (on the motorised exercise bike) for an hour, alternating between 90+ RPM and 100+ RPM.  I do manage to maintain the rate of exercise that I’m aiming for, but my lack of stamina sees me calling it a day after just under 50 minutes.  I do feel, for the first time, that I actually had a workout today, and I’ll try to improve on this at my next appointment.

Back home, I split a few logs, fill the log basket, light the fire, run the vacuum cleaner around downstairs and then vegetate on the sofa in front of the fire for the rest of the afternoon (punctuated by the usual dog walk).

Today I’m doing parcels!  I’m expecting FedEx to collect the parcel for my brother (in Nova Scotia) and I need to package up the item that I sold on eBay last night, and get it sent off to the purchaser.  TNT pick up my brother’s parcel on behalf of FedEx, so that’s out of the way (at long last) – fingers crossed that it arrives intact.  I spend an absolute age researching the cheapest courier service for sending my eBay parcel, eventually settling on ParcelForce – I wrap the parcel in bubblewrap, print off the address label and drop it off at the village post office.  Two parcels dispatched in one day – I’m on a roll!

I spend some time on the regular chores – bringing in the logs for this evening’s fire, lighting the fire (it’s chilly today) and vacuuming downstairs.

The conservatory (the cleaning and tidying of) is the focus of my wife’s attention today, so my focus is on disposing of my unwanted and/or obsolete electronic equipment which seems to take up most of the room out there.  My time is spent photographing said equipment, getting quotes from couriers, and creating eBay listings.   One item (that I thought I might have overpriced) sells almost immediately, which encourages me greatly.  I finally get around to booking a courier and completing all of the necessary customs paperwork for a parcel of goodies which we are sending to my brother in Nova Scotia (as payment in kind for running the website for my wife’s soft furnishings business).

My wife’s ex-husband drops in on us this afternoon with our youngest granddaughter in tow, which is a great excuse to stop what we’re doing and be entertained by her.

Our delivery of logs arrives first thing this morning, so my wife and I barrow them into our back garden from the trailer in the road, and then stack them neatly against the back wall, where they get covered over with a tarpaulin to keep them dry.  My wife fills the log basket for this evening’s fire, and I split a load of kindling for the week ahead.

My wife spends the rest of the day finishing off the grouting in the bathroom, so I spend the rest of the day trying to keep out of her way!   I walk the dog, clean the woodburner, light the fire, vacuum downstairs and then post links to my latest vlog on Twitter and Instagram.

This week’s vlog is about the progression of Parkinson’s Disease – a subject that is close to my heart (and constantly in my thoughts – especially on a Friday, when I lament the deterioration of my voice).  I switch my neurostimulator over to group “B” settings – I’m still uncertain whether my voice is clearer on these settings, but it certainly isn’t any worse.  I also try drinking some lemon and ginger tea, which seems to help a little.

I film myself with only 32 takes (I’m happy if I have less than 40 takes) but I’m very unhappy with my clarity of speech – I think that my voice is so slurred that I sound drunk, even though I’m trying to slow my speech down, project my voice and enunciate carefully (as instructed by my speech therapist).  I have an appointment with my London neurologist in a fortnight, so it’ll be interesting to see if she can improve my speech by adjusting the programming of my DBS…

It’s freezing cold in Southrepps this morning.  The roads are white with frost, and the entire village is shrouded in mist (and remains so all day).  I finally get around to ordering some more logs (there’s less than a week’s worth stashed in the garden), so we can expect delivery this weekend.  I spend some time sorting out our log storage area so that there’s room for the new logs, and fill the log basket for this evening.

I take our neighbour her birthday card and bottle of bubbly (she was out for the day yesterday), drink tea and have a bit of a chin wag, and then we take the dogs for a walk in the mist (you can’t see from one side of the field to the other).  The pain in my legs and back has receded a great deal, so I’m feeling a bit more flexible than of late.

I feel like I have been beaten up this morning – my aching legs are not quite as bad as they were last night, but that’s not saying much. I also have significant back pain, although I’m not really sure why.  I hobble around the field by the village hall with the dog, but I’m headed back indoors to slump on the sofa at the earliest opportunity.  I’d really like to light the fire and spend the day warming my bones, but I can’t face struggling in with the logs from the back garden, and there’s only enough wood in the log basket to fuel the fire for this evening.

I decide to occupy myself by driving to North Walsham and getting a birthday card and a bottle of bubbly for our neighbour (who has her birthday today).  On return to Southrepps, I take the dog for another hobble and then run the vacuum cleaner around downstairs before lighting the fire.

My legs are feeling the effects of all the walking that I did yesterday – my calf muscles are particularly stiff and painful.  I consider giving physiotherapy a miss this morning, but decide to go along and try – I can always stop if I’m in too much discomfort.  So, I give the dog a quick walk (making sure that my front door key is in a secure pocket), drink two mugs of tea and then drive to the cottage hospital in North Walsham.  I only manage 45 minutes (instead of my target of an hour) and my pedaling rate is about 20 RPM slower than usual, but at least I made the effort.

I call in at Lidl on my way back to Southrepps to get some fruit and vegetables (and a sneaky couple of bottles of Hobgoblin).   By the time I get back indoors, my legs are starting to seize up, so I fetch some logs in from the back garden while I’m still standing.

I’m in a substantial amount of pain this evening, so I self medicate with some cannabis which makes it more bearable.  Hopefully the discomfort will have eased off a little by tomorrow.

I’ve had quite an eventful day.  I managed to drop my front door key out of my coat pocket while I was walking the dog around the field by the village hall this morning (probably when I was getting a poo bag out of my pocket), and spent two hours walking (very slowly) up and down the field searching for it.  I had just given up searching, and phoned my wife to come home with her key to let me into the house, when I spotted it lying in the grass – thankfully before my wife had got in her car to drive back home!  I was cold and worn out from walking, so really glad that I could get back into the warm house and have a sit down.  I cleaned the ash out of the fire, cleaned the glass in the woodburner doors, filled the log basket, split a load of kindling, lit the fire, vacuumed downstairs, and then collapsed in a heap on the sofa.

 

I received an email from someone at the BBC wanting to use my “revised tremor control” video for a “Horizon” program about cannabis, so I reply to the email giving them my consent and asking to be notified when it is scheduled to be broadcast.

We are going shopping with my wife’s eldest son, his partner and our eldest granddaughter in Norwich today, so we are up at a reasonably early hour (for a Sunday), dog walked, tea/coffee slurped, and driving into the city.  We traipse around a variety of clothing and footwear stores until we have satisfied the urge to spend large quantities of cash, and then retire to the nearest McDonald’s where we satisfy the urge to eat junk food.

It’s almost dark when we get back to Southrepps and it’s cold, raining and windy.   My wife takes the dog for a walk while I get the logs in and light the fire.

My wife is spending the day grouting the bathroom tiles (she finished tiling the walls a couple of weekends ago) so I need to find something to do that keeps me out of the way.  I decide to wash and polish her car because I know how much she likes her car to be clean, and it’s absolutely covered in mud at the moment.  I spend two or three hours washing, drying and applying wax polish to her little car, and I’m completely knackered by the time I’m finished – her car looks really good, if I do say so myself!

I get the logs in, light the fire and vacuum downstairs while my wife is clearing away the grouting tools, and then we go to Mundesley to get a chilli cheeseburger (me) and battered cod (my wife) from the American diner for our dinner, accompanied by my wife’s youngest son, his wife and our youngest granddaughter.

My voice is my main cause for concern on a Friday, and this Friday is no exception.   I sound (to my ears) high pitched, husky, slurred and indistinct, so I try changing my neurostimulator to use group “B” settings (as I have done the last couple of Fridays).  My voice seems to be a little clearer on these settings, although I still think it sounds dreadful.  I manage to film myself for my vlog without too many retakes, and then put my neurostimulator back on group “A” settings because group “B” gives me more tremor in my right arm, which makes editing my video more of a challenge!

I finish editing early for a change, upload the video to my YouTube channel, publish it and post links to Facebook before my wife arrives home.

The temperature is below freezing again, and the field by the village hall is white with frost when I take the dog for her first walk of the day, which makes me prioritise the task of bringing in logs and lighting the fire (again).

I’m still not achieving very much, but today I manage to call Barclaycard to complain about a “late payment charge” that was levied on my last bill.  It’s something that I’ve been wanting to do for the last couple of weeks, but actually finding the phone number for customer services, and then picking up the phone and dialing it was a stumbling block.  Anyway, this morning I did it.  I did forget to pay my bill on time, so I was really resigned to paying the interest of six quid and odd pence, but I was not happy with the twelve quid “late payment fee” which I felt was disproportionate given that I always pay my bill in full and I was only two days late in paying it.  I have to take my hat off to the customer service representative at Barclaycard, though, who checked my account history, and then refunded both the “late payment fee” and the interest on the grounds that my account history showed that I usually paid on time.  I honestly hadn’t expected to have the interest refunded, so I was really pleased that I’d taken the time and trouble to call them!

I’m spectacularly unmotivated today – I have absolutely no drive to do anything.  The freezing weather doesn’t exactly inspire, but then I’m probably using that as an excuse…  I wrap up warmly when I take the dog out for her walks but other than that I stay inside in the warm (aside from fetching a basketful of logs from the back garden).  I light the fire early (again), and spend the day doing very little apart from toasting myself in front of it.

I do ring my previous power supplier to find out why they haven’t yet returned my credit balance to me (three months after transferring my custom elsewhere), and it transpires that they have gone bust, which explains a lot.  I am assured (by the company who are taking over their customers) that they will honour my credit balance, which will be returned to me “in the next few weeks” – I won’t hold my breath!

A much brighter day, today.  It’s a sunny morning and, although you wouldn’t say it was warm, it certainly isn’t as cold as it has been for the last few days.  I have physiotherapy again this morning, so I take the dog for an early walk, hurriedly slurp down a couple of mugs of tea, and drive to North Walsham cottage hospital where I exercise my legs on a motorised exercise bike for an hour.  While I’m in the vicinity I collect train tickets from the machine on the train station platform (I bought the tickets online over the weekend – for travel to London for my upcoming appointment with my neurologist).

I return to Southrepps around midday.  It’s getting chilly again, so priority goes to filling the log basket and lighting the fire.  I take the dog for another walk and then drop in on a neighbour for a cup of tea and a chin-wag.  It’s getting dark when I return home, so I chuck another couple of logs on the fire, switch on my SAD light and sit in front of it (and the fire) for an hour or so.

I finally get around to trying out the SAD light that my wife bought me for Christmas (it is supposed to affect the production of melatonin in the brain, and help tackle the “Winter blues” caused by the darker days of this time of year).  I have the light on for a couple of hours – no immediate effect, but then I hadn’t expected one.  I’ll aim to use it every day for at least an hour, and see if helps my mood and/or energy levels after a couple of weeks.

The weather is cold and grey once more, and I light the fire just after 11am, stock the log basket up with logs, and spend most of the day sitting on the sofa keeping warm.

There is a hard frost this morning, and the temperature hovers around freezing all day.  My wife and I are dropping in on her parents this afternoon, so we spend the morning cleaning and tidying our house, filling the log basket in preparation for this evening’s fire, and vacuuming up dog hair.

We drive over to Worstead (via Lidl in North Walsham for some vital supplies – a few bottles of Hobgoblin for consumption this evening) and spend a couple of hours chatting to my wife’s mum and dad, giving them a stove fan that we bought for them as a thank you for looking after our dog while we were on holiday last October (and booking them in for further dog-sitting later this year).

Just as we get back to Southrepps, my wife receives a phone call from her youngest son – he’s had a water leak in the bathroom, flooded the kitchen, has no power and no heating!  We leave for Hevingham to assess the damage and see what we can do to help.  Two hours later, having isolated the leading pipe and restored power and heating, we return home for a dinner of biscuits and Hobgoblin (neither of us felt like cooking, so we didn’t bother).   I light the fire and we watch the remaining two episodes of Unforgotten on Netflix.

We are babysitting our youngest granddaughter this afternoon and evening, so this morning is a bit of a mad rush.   My wife does our laundry, makes tea/coffee and nutriblasts, etc. while I empty the ash from the woodburner, clean the glass in its doors, fill the log basket, split kindling for the week, and vacuum downstairs.

We collect our charge from Hevingham, and then head over to Lidl in North Walsham to do our main grocery shopping for the week, and then return to my wife’s youngest son’s house for the remainder of the afternoon and early evening.

By the time we’re relieved of babysitting duties (which are largely performed by my wife) I’m feeling exhausted, and am very happy to be heading home to Southrepps.  I put a match to the fire that I laid in the woodburner this morning, and we watch another episode of Unforgotten on Netflix.

It’s my wife’s eldest son’s birthday today, so we plan to go to his house in Hevingham after dinner to have birthday cake and give him his presents.  This means I have about an hour less than usual in which to research, script, film, edit, upload and publish my weekly vlog.

I take the dog out for her morning walk (it’s frosty outside) and then get some logs in and light the fire (I hate being cold).  I lag behind a little on researching and scripting, but filming goes remarkably well (with less than the usual number of retakes).   I still haven’t finished editing the video when my wife arrives home, and we leave to go to Hevingham before I’ve uploaded it to my YouTube channel.

It’s 9pm by the time we return from the birthday celebrations, so I quickly upload and publish my vlog, and then post links to it on Facebook and the online Parkinson’s Disease forums, before sitting down in front of the telly with my wife to watch another episode of Unforgotten on Netflix.

I’m a little more motivated today, but only a little!  I have a few items on my “To Do” list, and I actually manage to cross all of them off.  I check the price of train tickets to London for an appointment with my neurologist on the 14th February, I email the DBS nurses to see if I can get an appointment for a tune-up before seeing my neurologist, I drive out to my doctor’s surgery at Aldborough to pick up a prescription, I scan and print an official document and have it verified at the post office, and I call Virgin Holidays about the holiday that I booked online yesterday (they had charged me twice due to a website error).

It snows and hails this morning, and it is pretty damn cold when I take the dog for her morning walk, so I light the fire early (around 12pm) and dash out with the log basket (during a hail shower) to fill it with logs from the back garden.   Apart from taking the dog for her afternoon walk, I stay inside and keep warm in front of the fire.

An uninspiring day, here in Southrepps.  It’s grey and cold when I walk the dog this morning, starts to drizzle mid-morning and, by the time the dog is pestering me for her afternoon walk, it’s raining steadily – terrific!  I brave the weather to get some logs in for the fire, and again to take the dog for her walk,  then light the fire and run the vacuum cleaner around downstairs.

I decide to check out some prices for our holiday later this year, and manage to find exactly what I wanted (exactly the same holiday that we went on last October, for our wedding anniversary) in the Virgin Holidays sale, at a lower price than I paid last year – so that’s cheered me up!

I have a physiotherapy appointment at North Walsham cottage hospital this morning, so I gulp down my 2 mugs of tea and take the dog for an early walk before driving to North Walsham.  I’m a few minutes early for my appointment, so I pop into the town centre to buy some firelighters – I used the last ones up a couple of days ago, and am now running out of newspapers to light the fire with.  I spend almost an hour on the motorised exercise bike, which I’m pleased about, and then return to Southrepps.

While I’m still standing and moving about, I fill the log basket and light the fire (I’m feeling the cold at the moment), and then organise the gas cylinders in the back garden that have just been delivered.  I take the dog for another walk before darkness falls, and then sit on the sofa in front of the fire until my wife returns from work.

I only do the bare necessities today – a couple of trips to the field by the village hall with our dog, bring in some logs from the back garden, light the fire and run the vacuum cleaner around downstairs.  The rest of the day is spent sitting on the sofa, replying to some emails and a few comments on social media, and catching up with the news on Twitter and The Metro online.

The cold that I have had for the last week or so isn’t showing any signs of departing as yet, but that’s just an excuse really.  I’m not feeling so ill that I can’t do anything – it’s Parkinson’s eating away at my brain that’s taken my “get up and go”, replacing it with “just sit here and vegetate”.

Today is far less frenetic than yesterday, in fact I have a very lazy day.  My wife catches up on stuff that she would normally have done yesterday (if she hadn’t been tiling the bathroom), and I fill the log basket!

We venture out to North Walsham around lunchtime to do some grocery shopping in Lidl and Sainsbury’s, and we pop into Roy’s for my wife to look for a pair of shoes in the sale (not as painful as it sounds – she bought the first pair that she tried on).

On return to Southrepps, I light the fire and take the dog for a walk.  My wife prepares dinner, and then we sit in front of the telly and watch a couple of episodes of Unforgotten on Netflix.

My wife has decided to do some more tiling in the bathroom today (trying to finish off the job that I started several years ago), so while she’s getting on with that, I post links to my latest vlog on Twitter and Instagram, and then attempt a little cleaning and tidying downstairs.  I clean the sofas, wash the hearth and the outside of the woodburner, empty the ash and clean the stove windows, get the logs in from the back garden, light the fire, walk the dog and then vacuum downstairs.   I’m absolutely knackered after all that activity, so I slump on one of the sofas in front of the fire to recover (and don’t really move from there until it’s time for bed!).

My car has been repaired, so my wife drives me to Autowerke in Norwich this morning to collect it.  The mechanic who takes my money (and who has discussed my Parkinson’s and DBS with me before) greets me with “Good morning, Mr Frizell.  I’ve been watching some of your videos!”, which was nice to know.  It’s all very well knowing that people are viewing my videos, but it’s a real buzz getting direct feedback from someone in real-life!

I dash home to Southrepps so that I can get stuck into this week’s vlog.  My voice is still weak and slurred (but not as bad as it was last Friday) so I change the settings on my neurostimulator to group “B” from group “A”, although I’m not convinced that it makes a great deal of difference.  As soon as I finish filming myself, I change it back over to group “A” settings.

I manage to finish my vlog, upload it to my YouTube channel, publish it and post links to it on Facebook and several online PD forums before my wife arrives home from work.

I start the ball rolling by speaking to a case worker at Norman Lamb’s North Walsham office this morning about Norman’s offer to write to my London neurologist to ask her if she would make an Individual Funding Request (for exenatide) which the local CCG have said they would give “due consideration” to.  I still believe that the CCG will refuse to allow my doctor to prescribe it, but it is the next logical hoop that I have to jump through. I check through the text of the email that I wrote to Norman yesterday, and then send it to him.  Perhaps it’s a waste of my time and effort to respond to the letter that Norman forwarded to me (from the local healthcare trust, setting out the reasons why I shouldn’t be given exenatide) because ultimately the decision is made by the CCG, but their letter contained inaccuracies that I simply couldn’t ignore.

I research parcel couriers for a parcel full of goodies that we want to send to my brother in Nova Scotia – we sent him a similar parcel last year, but this year the courier has listed “all foods” on its list of prohibited items, and couriers who do not have this restriction are almost twice the price!  I resign myself to posting through the nose for carriage, and resolve to pack a few more goodies into the box to make it worthwhile.

I’m feeling the cold at the moment (although it really is quite mild for the time of year) so at lunchtime I get the logs in and light the fire.

I spend the day writing to Norman Lamb (my Member of Parliament) in reply to his recent letter and email containing the responses from the Clinical Commissioning Group (CCG) and local healthcare trust regarding the refusal to prescribe exenatide for me.  I have been meaning to do this since I received his email last week, but something else always seemed to get priority.  Although I expected them to continue to deny this drug to me, I’m really quite annoyed by the language used by the author of the healthcare trust’s response – trivialising the results of the recent clinical trial, and suggesting that I was an unsuitable candidate for the drug because of the severity of my Parkinson’s (determined by the fact that I have had Deep Brain Stimulation surgery which, apparently, is indicative of disease severity).  I refrain from being too blunt in my rejection of their version of the truth, and research my facts carefully, although I feel sure that my letter will have absolutely no effect whatsoever.

I get my wife to critique what I have written, and she approves and makes a couple of suggestions to make my point more clearly.  I revise it, and will email it to Norman tomorrow.

At long last the NHS have repaired the motorised exercise bike at the cottage hospital in North Walsham (it broke down about 4 or 5 months ago), and this morning I have a physiotherapy appointment.  My wife drops me off at the hospital (the only place I’m driving my car today is to the garage, to be repaired – I think the bearing on the water pump has given up the ghost) and I manage to impress myself by cycling for almost a whole hour, non-stop.  My wife collects me and drives me to Hevingham, where I collect my car and drive it directly to Autowerke to be repaired, so I expect to be without a car for a day or two now.

It’s quite windy today, and it feels very cold, so the first thing I do on returning to Southrepps is fill the log basket and light the fire.  The dog invites me to walk her around the field by the village hall, and then I vegetate on the sofa in front of the fire until my wife arrives home from work.

I have a speech therapy appointment this lunchtime so, after drinking tea and nutriblast, walking the dog and listening to PopMaster, I head off to Norwich Community Hospital.  I break my journey at Hevingham to swap cars with my wife – my car has developed a loud rattle from the engine, and I don’t want to drive it too far before it goes to the garage tomorrow for diagnosis and repair.

My speech therapy appointment passes without incident.  We discuss many of the strategies that I already employ when preparing my weekly vlogs, and my therapist makes some suggestions to overcome my problems with intonation, so that’s useful.

It’s starting to get dark by the time I get back to Southrepps, so I fill the log basket, light the fire, and then take the dog for her afternoon stroll.

I’m thick with cold this morning, and all I want to do is sit somewhere move and warm – so I fill the log basket in the lounge, light the fire, sit on the sofa and try to reply to some of the messages that friends and relatives have scribbled inside Christmas cards.

I venture out only the once (besides getting the logs in for the fire) to take our dog for her afternoon walk (my wife took her this morning) – it feels very cold outside (but perhaps that’s just because I’m feeling under the weather) and I’m glad to get back indoors and in front of the fire.

We have a delivery of two cubic metres of logs this morning, so much of the day is taken up with barrowing them in from the road into our rear garden, and then stacking them neatly against the rear wall.  I’m feeling even more stiff today than I was yesterday – basically, I’m aching all over, and bending down to stack the logs really hasn’t helped!  I split a load of kindling, fill the log basket, empty the ash and clean the glass in the doors of the woodburner, light the fire, run the vacuum cleaner around downstairs, and collapse in a heap on the sofa.

We are babysitting our eldest granddaughter for a few hours this evening, so we have an early dinner and then drive over to Hevingham.  Our granddaughter is back on form (she’s had a nasty cold recently, which she has managed to pass onto me), and she is happy and bubbly, which is always nice.  When we get back home to Southrepps, I administer treatment for my “man flu” – a shot of 15 year old Dalwhinnie and some cannabis.