Month: October 2017

I’m feeling shaky and lethargic today.  I need to do something about the shaking (its driving me mad), so I change the settings on my neurostimulator to group “A”, which are the settings that I was using prior to my latest reprogramming session. Tremor is a little better on the old settings, but not a lot!

I need to arrange insurance for a courtesy car that I am being loaned while my car is in the paint shop at East Bilney Coachworks having a defective repair rectified – let’s hope they can spray my car the right shade of silver this time (it took them at least three attempts last time) – so, I brace myself for a frustrating hour or two of being on the phone to an understaffed call centre.  Amazingly I am in the call queue for less than a minute, and my request is dealt with very efficiently by a very good natured customer service representative – full marks to Churchill Insurance!

I have a long Skype call with a friend in British Columbia.  He is an advocate for medicinal cannabis, so we end up discussing different strains of cannabis, and the best vaporisers to use.  It looks like there is significant benefit to be had by having a more sophisticated vaporiser than the one that I have, so I guess I’ll be buying a new one in the not too distant future.

After dinner I switch my device back to group “B” settings because my voice is weak and slurred, and I want to talk to my wife!

We had a really late night last night, and didn’t get home from our friends’ house until almost 1am.  Luckily the clocks went back by an hour last night , so we got the opportunity to enjoy an extra hour asleep.

We are researching wedding cakes today – my wife’s youngest son and his fiancee are greeting hitched next month and we have said that we will sort the wedding cake for them.  After much deliberation we decide that we will bake the cake ourselves, so we go to Lidl in North Walsham and Tesco in Sprowston to buy all of the necessary ingredients.

The rest of the day is taken up with sourcing the relevant sizes of cake tins on eBay and Amazon.

My tremor is still breaking through very strongly in my left leg, and the improvement in my other symptoms doesn’t compensate for it.  I self medicate with some cannabis, which enables me to relax a little this evening.

We are going out to dinner this evening to some friends of ours in the village, so this morning we go to North Walsham to buy some wine, chocolates and flowers to take our hosts.

This afternoon I occupy myself by washing my wife’s car, while my wife busies herself doing the laundry and cleaning the house.

I tire very easily these days, and cleaning the car almost finishes me off.   A nice hot bath, a shave and a change of clothes makes me feel more human again.  Tremor is still playing me up in my left leg, but it doesn’t seem any worse than it was last night, so I leave the settings of my neurostimulator alone (for the time being).  When we go out to our friends’ house this evening, I make sure that I take my DBS remote control (or Therapy Controller) with me – just in case I need it.  I don’t seem to have provoked any undesirable side effects with my three adjustments of yesterday, so that’s a positive.  My other symptoms appear to be much the same as they were, so everything is bearable at the moment.

I have a fairly disturbed night, waking up several times, but feel reasonably okay when I get up this morning.  I think I am now recovered from our trip into London (for DBS settings changes at the NHNN) on Monday.

My voice is still an improvement over my previous settings, and my balance, walking, muscular tension/weakness/stiffness are all marginally better, too.  My tremor (left leg) is much worse and is driving me mad.  I have so far resisted making any changes to my settings because I wanted to give the new settings time to settle in, and also I was incredibly tired (which affects my symptoms) from the trip to London.

I throw caution to the wind and increase the left-hand voltage by 0.1v. Immediately I feel the tremor lessen, which pleases me immensely.  I’m not so pleased half an hour later when I feel tremor creeping back into my left leg.  Another 0.1v puts the lid on it for a little while, but I soon feel tremor emerging once more.  I live with it while I script, film and edit my weekly vlog, but after dinner I add another 0.1v to the left side which, although it doesn’t eliminate the tremor, certainly causes it to decrease.  My group “B” settings (the new ones) are now 2.30 volts on the left, and 2.75 volts on the right.  I dare not increase it any further today, so I self-medicate with some cannabis and crack open a beer.

I’m getting back to normal now, following our trip to hospital on Monday.   I feel less exhausted, and my aches and pains are now abating.

An assessment of my latest neurostimulator adjustments:  my voice seems to be a little better – not perfect, but less slurred/more distinct;  muscular stiffness/weakness/tension is still uncomfortable, but less of a problem than the last few days;  tremor in my left leg is worse than it was on my previous settings – it may improve if I increase the voltage on the left side, but I’m holding off from any adjustments until I am fully recovered from the trip;  balance is better and walking is a little less wooden;   dyskinesia in my right arm is still causing a few problems;  dystonia in both feet is worse than on the previous settings, but it’s bearable.

My wife and I are looking after our eldest granddaughter this morning so, after drinking our morning cups of tea/coffee and walking the dog, we drive over to Hevingham to assume responsibility.  We entertain her with games and toys, and then take her to the local children’s playground (which she loves).  At lunchtime, we hand over to the afternoon staff (her other grandparents), my wife goes to work and I return to Southrepps.

I tidy and vacuum downstairs, and take the dog for her afternoon walk.

It’s our wedding anniversary today, so I have booked a table in The Vernon Arms for dinner this evening, and there’s a bottle of Prosecco chilling in the fridge.   My wife is under strict instructions to be home by 5.30pm today so we can get ready to go out (and enjoy a couple of glasses of wine before we go out).

I’m feeling less fatigued today, but tremor in my left leg hasn’t abated appreciably.  I think that my voice is a little better, and muscular tension doesn’t seem quite so bad as it was yesterday.

It’s my wedding anniversary tomorrow, so I need to get a card and gift for my wife.  I drive into North Walsham this afternoon and purchase flowers and fruit (it’s our fourth anniversary) and a nice card – I also took delivery of a nice pink wheelbarrow this morning, something that I know she wants to make life a little easier on the allotment.  I bought a bottle of Prosecco, and booked a table in The Vernon Arms for dinner tomorrow night.  I bumped into one of our neighbours when I went over to the pub to book a table, and he led me astray by buying me a pint of Abbot Ale.  Naturally (it’s just good manners) I buy him a pint in return, so I’m half cut by the time my wife gets home – luckily I have put dinner in the oven, and I have sorted out stuff for tomorrow, so Brownie Points have been earned…

I am thoroughly cream crackered (knackered) today.  I suppose it is only to be expected after having such long day yesterday – we didn’t arrive home from London until 11.30pm last night, so it was well after midnight by the time we got to bed.

My new settings are not as good as I had thought they were yesterday, although this could also be down to being so tired – my voice sounds slurred and indistinct (to my ears), tremor is still breaking through quite strongly (mainly in my left leg), muscular tension in both arms is exacerbating muscular weakness, my balance and walking aren’t great, and dyskinesia in my right arm has me flailing around when I get to my feet from the sofa.  I’ll have to see how things are when I have recovered in a couple of days, I’m certainly not going to give in to the temptation to fiddle around with my device settings just at the moment.

I’m not really complaining about my settings.  As my wife said (while we were at the hospital yesterday) it seems wrong to complain about my DBS when we consider how my life would be if I didn’t have it.   It’s just that if it is capable of controlling my tremor without affecting my voice, then I’d like to have that setting programmed into my device, please.  It’s not that straightforward, however.  It’s all a bit hit and miss, this device programming lark.  Nobody knows quite what is possible, and it is a series of trial and error adjustments that end up being saved to my neurostimulator, to go away and live with for a while…

I have a brief tidy around the kitchen and lounge, and then run the vacuum cleaner around downstairs before my wife gets home.

After dinner, I indulge in a little cannabis and a beer (just for a change).

Today I have an appointment with the DBS nurse at the NHNN in London, so my wife and I have a quick breakfast, tea/coffee and are on the 10.07am train from Gunton to London Liverpool Street.

We arrive at the hospital bang on time, and I’m soon having my neurostimulator reprogrammed.   The nurse sends me away to have a cup of coffee and see how the new settings are, so we go to visit my friend (who had his DBS operation last Tuesday) and chat to him for a while whilst the new settings “bed in”.   My friend is looking extremely well and seems very happy with the outcome (so far).  I’m less happy with the new settings, so we return to the DBS nurse, and she has another go.  My wife and I wander down to one of the hospital canteens, where we meet up with London artist Martha Orbach to talk about the Parkinson’s/DBS awareness project that she is working on.  It all sounds very interesting, and Martha has plenty of questions for me to answer about PD, DBS and my reactions to them – hopefully my answers will help shape her work.

My latest settings seem to be okay (give or take a smattering of tremor and dyskinesia – it always takes a little time for new settings to settle in) so we say goodbye to Martha, and head off on the underground to Oxford Circus, where I treat my wife to a slap-up meal at McDonald’s.  We walk to the blues bar in Soho for a beer and some live music to pass the time until our train back to Norfolk at 8.30pm

It’s my wife’s brother’s 50th birthday today, and we have planned a surprise birthday lunch for him at The Recruiting Sergeant in Horsford.  So we are at the pub quarter of an hour early to decorate the table with embarrassing photos and helium balloons.  We have a thoroughly enjoyable meal with all of my wife’s close family, eating far too much and drinking several beers (thankfully my wife was driving).  My wife’s sister-in-law made a fabulous cake and her brother was well pleased with his birthday gifts – a very successful afternoon!

We return to Southrepps, where I receive news that my mother is unwell – her carers gave her some medication that wasn’t intended for her, and she has been asleep and unresponsive for several days – quite why they have only just decided to let me know is a mystery to me!  My wife and I drive over to Stalham to see her.   She seems comfortable enough, but is in a semi-conscious state.  She appears to be asleep, but definitely responds to our voices, and even says “bye”when we are leaving.  Her doctor will see her in the morning, and then perhaps we will have some idea of what the problem is…

We drop the dog off at my wife’s parents – we are going to the NHNN in London tomorrow to have my neurostimulator adjusted.

My wife and I spend the day occupying our eldest granddaughter (who has just turned two years old).  It’s a great age, and she is coming out with new words all the time, forming sentences, questioning – my wife and I are thoroughly entertained.

Our dog likes having her around as well – she is very much in favour of humans that drop their food…

We return the little lady to her parents this afternoon and them drive to North Walsham on our way back home to buy a birthday card and wrapping paper – it’s my wife’s brother’s 50th birthday tomorrow, so no doubt we will be doing a little celebrating in the pub tomorrow.

My walking is pretty rubbish at the moment, my voice is slurred and indistinct, and tremor is breaking through in my left leg – I’m pleased to be going to the NHNN on Monday for a bit of a DBS tune up!  In the meantime, a little cannabis is called for (and a beer).

We are having our eldest granddaughter to stay tonight, so making the house clean, tidy and child-proof starts as soon as we get out of bed.

My wife cleans and tidies downstairs while I construct a guard to go around the fireplace and hearth.  My wife vacuums downstairs while I take the dog for her morning work.   My wife then departs for work (late) while I try to decide the subject matter of my weekly vlog.  I make my decision, do a little online research to ensure that I have my facts straight, and then write a script for the video on my iPad.

I interrupt my vlogging to deal with some paperwork required by my wife’s accountant, take the dog for another walk and then get cracking with the filming.

I’m not at all happy with my voice.  It is stronger than it has been recently, but it sounds indistinct and slurred to my ears.  I try changing my neurostimulator  over to group “B” settings – my voice instantly sounds better, but my eyes keep slamming themselves shut, so I have to revert to group “A” again.  I finish my filming (with a fair few retakes) but I’m really not happy with my voice!

I manage to get my vlog edited, uploaded to my YouTube channel and published before my wife arrives home with our granddaughter, which was my aim!

Another early night, another good night’s sleep, another day of feeling completely exhausted.  I resign myself to another day of virtual inactivity.

I received a text from my friend who had deep brain stimulation surgery on Tuesday, saying that all was well, which is very good news.  His neurostimulator is being switched on for the first time this morning, so I’m thinking of him (and his wife) and hoping that he gets a good result.

I take the dog for her morning walk, and then receive a phone call from my wife’s accountant, and he tells me what he requires so that he can prepare the audit of last year’s accounts for her soft furnishings business.  I spend much of the rest of the day (aside from the afternoon dog walk) exporting the data from GnuCash (the software that my wife uses to do her accounts) in variety of different formats – hopefully he will be able to make sense of them.  I email the data to him, along with the company bank statements.

After dinner I self medicate with a little cannabis, and finish off the bottle of red wine that was opened on Sunday.

We had an early night and I slept really well, so I can’t understand why I’m still feeling so washed out at the moment.  I have a few tasks that I need to do today and I’m struggling to motivate myself to do them.  They are really not too onerous, and I know that I’ll feel a sense of achievement when I’ve done them, yet I’m still struggling.

1. Send a text message to my friend who underwent deep brain stimulation surgery yesterday.   I actually managed this one fairly easily, but it’s getting late in the day now and I haven’t had a reply so I’m thinking that I’d better call the hospital to enquire after him.

2.  Call my wife’s accountant to ensure that he has all the information he requires to prepare last year’s accounts.   I manage to do this one relatively easily as well, but his phone rings and rings and he doesn’t pick it up, so I’ll have to try his home number this evening.

3.  Order a board to construct a bath panel that can be tiled.  I hunt out my trade card for the local builder’s merchant, but find that it is so long since I last used it that they have closed my account.  Rethink required!  Perhaps one of my property renovating neighbours still has an account and could be persuaded to order the board on my behalf…

The dog forces me out of the house for her walks, which gets me a much needed breath of fresh air.  The weather ain’t great, but at least it doesn’t rain any more than it already has.

My voice is still slightly slurred and tremor is still quite strong in my left leg.  I have a constantly twitching muscle in my left shoulder that’s driving me mad and the occasional stabbing pain in the middle of my back – I’m not sure if these are Parkinson’s related, but it’s a pretty safe bet.  My balance is okay (ish) and my walking is a bit wooden.

I tidy the kitchen and vacuum downstairs before my wife gets home from work, and then have a dose of CBD oil to help me relax.

I’m still feeling tired.  Still aching.  Still don’t feel like doing anything.

I have to wait in until the courier company calls to collect the parcels containing the Kenwood Chef food mixers  – that suits me.   I wasn’t planning on going anywhere in any case.  I packaged the mixers last night, but I want to try to ensure that the courier treats the packages with a little respect, so I print off some sheets of A4 that say “FRAGILE!  THIS WAY UP ^” and attach two of these to each package.   I’m not sure that it’ll make a shred of difference, but at least I can say I’ve tried!

My son sends me a Facebook message from The Philippines asking me awkward questions about fees for withdrawing money from an ATM out there – so, I spend half an hour with Mr Google, find the relevant information for him, and message him back.

I guzzle some of the food that was leftover from our boat trip on Sunday – I don’t usually bother with eating lunch, but I do hate to see good food go to waste – and that’s exactly what will happen to it if I don’t eat it.

The courier arrives just before 4pm, and then I take the dog fore her afternoon walk.  I bump into a fellow dog walker and it’s while in chatting to her that I become aware that my voice is slurred and indistinct – I sound like I’m drunk; most embarrassing.  I’m guessing it is due to fatigue, which is probably why my left leg tremor is back in full force today as well.  Time to self medicate with some CBD oil, and perhaps a beer (I might as well, since I sound like I’m drunk in any case!).

Today I am on the other end of the see-saw that is Parkinson’s Disease (well, my manifestation of Parkinson’s Disease, at any rate).   I’m paying the price for a (relatively) active day yesterday, so today I am tired and aching and really don’t feel inclined to do very much at all.

I respond to a couple of emails that have been waiting for my attention since the beginning of last week, and then search out a couple of boxes to package the two Kenwood Chef mixers that I managed to sell on eBay over the weekend.  I package the two mixers to the best of my ability, and hope that they will reach their destinations in the same number of pieces that they are currently in!  I research courier prices, and book a courier to collect the two parcels tomorrow.

The dog gets me out of the house for 20 minutes this afternoon, which does me a bit of good.

My tremor is better than it was yesterday, but my right knee is painful and makes it difficult for me to go up and down our steep staircase, and I keep getting stabbing pains in my back which are most unpleasant – I prescribe cannabis for myself, which takes my mind off things…

Today we are going out on our boat with a couple of our neighbours.  They have been consistently generous towards us from the moment that I purchased the cottage (as a renovation project) back in 2011, arranging for me to borrow a cement mixer from a local builder (free of charge) and offering the loan of tools and equipment should I need them.  These days we are likely to be ushered into their kitchen and given copious quantities of red wine.  Suffice to say, its payback time (in a very small way).

My wife makes sandwiches and bakes a cake to take with us, and we leave Southrepps for Wayford Bridge (where our boat is moored) at lunchtime.

Its a beautiful warm and sunny day – perfect for being out on the river.   We cruise down to Barton Turf where we moor up and consume afternoon tea, washed down with copious quantities of Prosecco (provided by our guests).

A slow cruise back up the River Ant ends our afternoon trip, and we are back home again before the light goes and it starts to get chilly.

My symptoms have been reasonably well under control of late, the only outward signs of my condition today have been some mild tremor in my legs, and a voice that has occasionally deserted me.

I’m having a lazy day today.   There’s loads of things that I should be getting done around the house, but I simply don’t have the energy.  I do find the energy to take the dog for her morning walk, and then I drop in to see our neighbours to see if they’d like to join us for a trip down the river on our boat tomorrow afternoon (weather permitting).  Our neighbours would like that very much, so that’s tomorrow taken care of.

I pop down to the allotment to see how my wife is getting on (she’s been down there for an hour or so) and end up running the lawnmower around the overgrown paths.  It only takes me about 20 minutes, but by the time I’m finished I’m hot, sweaty and in need of a sit down.  I somehow get accosted by our neighbours on my way back to our cottage, and end up joining them for a cup of tea in the garden, and then assisting in the fitting of a cooker hood in their kitchen.  Eventually I get back home and have a brief rest prior to taking the dog for an afternoon stroll.

We go to Worstead to visit my wife’s parents and brother this evening, stopping off at Lidl in North Walsham on the way to purchase some supplies for tomorrow’s boat trip.

Today was a typical Friday.  It’s vlog day, so the whole of my day revolves around scripting, filming and editing my weekly vlog.  This week I’m vlogging about the Patients at Parliament protest for legal access to medicinal cannabis that my wife and I attended on Tuesday, so I have a lot of footage (taken on the day) to sift through, as well as the video that I shot today.  My voice is on the weak side today, but I concentrate hard on projecting it and manage to film myself without too many retakes.

Editing takes a little longer than usual because it’s not just a straightforward piece to camera, I need to incorporate some shots from the day in question, but I am almost  finished by the time my wife arrives home.

I leave it uploading to my YouTube channel while we pay a visit to Lidl in North Walsham to do some grocery shopping.

I’m still recovering from our day out in London on Tuesday, so I really don’t want to get out of bed this morning, but I have to take my car back to the MOT testing station today, to have it retested… So, I get up at 8am and, after walking the dog and drinking my cuppa and nutriblast, I leave the house to drive to the outskirts of Norwich (again).

My car passes its MOT test, and I decide to pay a visit to the bodyshop that made a minor repair to my car almost three years ago – I noticed (or rather my wife noticed) that the paint around the door handle was starting to peel.  I’m not impressed!  The bodyshop manager takes one look, and says he will sort it out, so that’s good.

It’s 2pm by the time I get back to Southrepps, and I have quite a bit to do before my wife gets home from work.  I export all of the video that we shot at the Patients at Parliament protest on Tuesday to my MacBook, ready for editing for my vlog tomorrow, and then explore ways of exporting my wife’s business accounts from Gnucash so that we can email them to her accountant.

Symptoms today?  Voice is rubbish, walking is stilted, tremor (left leg) is annoying.  I take some high potency CBD oil, and that provides me with some relief of tremor, at least.

My wife has a sales rep calling to see her this morning, so we are up, tea/coffee drunk and waiting for her to arrive at 9.30am.  She’s late, and doesn’t arrive until gone 10.00am.  By the time my wife and her have finished discussing business, its midday and my routine has been well and truly disrupted – no PopMaster for me today!

My car is going for its MOT test this afternoon, so I leave the house at 1.30pm to drive to the outskirts of Norwich.  I dash into Lidl before driving to the testing station (to pick up a few items that we have run out of), and arrive 20 minutes early for my appointment.   90 minutes later I receive the news they my car has failed the test – disaster!  I quickly drive over to Autowerke, tell the mechanic what the problem is, and wait around to see if he is able to fix it.  I receive the usual top notch service: the problem is fixed while I wait, the mechanic manages to effect the necessary repair using some parts that he has lying around the workshop, and then doesn’t charge me for either the parts or his time – I guess he felt that he had had enough money from me this week!  Unfortunately it is too late in the day to have the car retested, so I will have to drive over to Norwich and back again tomorrow, which is a bit of a nuisance.

I’m feeling less tired than I thought I would be today, given the long day we had yesterday.  The only symptoms that are bugging me are tremor in my left leg and a weak voice, so nothing too serious

My wife and I are travelling to London today, to join the Patients at Parliament protest for legal access to medicinal cannabis, so we’re out of the house before 8.30am to catch the 8.45 train from Gunton.

Our journey is a smooth one and we arrive at London Liverpool Street station on time.  We have a bit of a kerfuffle on the underground because the London underground app tells us to go in the wrong direction!  Even with this minor error, we arrive at Westminster just before our ETA of 12.30.  We are greeted by Jonathon Liebling of the United Patients Alliance (UPA) and before we know it I’m being introduced to some supportive members of parliament (Tonia Antoniazzi and Layla Moran) and then I’m being interviewed by a reporter from the Daily Mirror, and then by a reporter from Volteface…

The protest is peaceful and good humoured, and there are medicated edibles available for those that wish to practice civil disobedience (which I do).

The protest is timed to coincide with Paul Flynn MP’s 10 Minute Rule Bill for legal access to medicinal cannabis.  Originally this was scheduled to be at 2pm, but some sort of delay put it back until around 4pm – I think that everyone was half expecting it to sink without a trace. Amazingly, news came through that the Bill passed, and there will now be a second reading on 23rd of February 2018, so I expect we will be doing this all over again next year.   Fantastic news, though, and everyone was very encouraged by it.

My wife and I left the protest around 4.30pm, grabbed a bite to eat in McDonald’s and then went to the Blues Bar for a beer or two before catching our train home.   I think I’m going to be taking it very easy for the next day or two!

My wife drops me off at Autowerke this morning. I pay the eye-watering bill, collect my car and book it in for an MOT test on Wednesday – I’ll be pretty upset if it fails on anything!

Back in Southrepps, I have a few things to get sorted out for the Patients At Parliament protest tomorrow.  I have received an email from Baroness Meacher saying that she is unfortunately unable to attend the protest, which is a bit of a shame.  I speak to her PR man, though, and he volunteers to promote the event on Twitter, so that’s something positive.

I chase up Greater Anglia – my train tickets (which are e-tickets) should have been emailed to me last Thursday, but still haven’t arrived.  After several failed attempts, their customer service representative managed to get the tickets emailed to me, and I print them off in readiness for tomorrow.

I chase up the NHNN about an appointment to reprogram my neurostimulator, agree a date and time, and then book train tickets for the journey.

I clear all of the vlog footage from the memory card of my camcorder and make sure that both batteries are fully charged.  I have it in mind to do a vlog about the protest, provided I can get some interesting shots.

I charge my vaporiser and give it a good clean, just in case I decide to take part in the civil disobedience of illegally taking some cannabis outside the Houses of Parliament.

My wife and I drop the dog off at her youngest son’s house, where she will stay until Wednesday, and then get ourselves an early night – tomorrow is going to be a long day…

My wife intends to press on with the bathroom tiling today, so I need to find something productive to do that will make me feel useful.  I have somehow managed to accumulate three Kenwood Chef food mixers (don’t ask me how – I can’t remember).  Since these mixers are quite large, we really don’t have room for them.  I have been saying that I will sell them on eBay for quite some time now, so when I ask my wife what she would like me to do…  You’ve guessed it!

I locate the machines and their various accessories, and set about cleaning them up so that I can take some nice photos of them (which I do).  I write a description, schedule the auctions so that they end next Saturday and Sunday evenings, and list the first two mixers.  It sounds really quick, simple and straightforward, but it has taken me the whole afternoon to clean, photograph and list 2 items!

I bung a couple of ready meals in the oven while my wife clears away the tiling debris, and then we settle down in front of the telly for a dose of Dexter.

I don’t want to get out of bed this morning.  I slept really well, but I’m still feeling exhausted, so I stay in my pit until almost 10am.

I don’t really have any plans for this weekend, other than doing some grocery shopping – so my wife and I venture out to Lidl in North Walsham and get a load of groceries.

We are going to have dinner with my wife’s youngest son and his fiancee this evening – my wife is cooking the dinner (Cottage Pie) and we’re taking it with us. My wife prepares the meal while I lounge around, checking social media and planning our trip to London on Tuesday.

At 4pm we head over to Hevingham armed with dinner, a very fattening dessert, a couple of beers (for me) and the dog (she doesn’t like it if we go out for the evening and leave her behind).  We have an enjoyable evening, see both of our granddaughters, and get back to our cottage in Southrepps around 10pm.

I decide that my weekly vlog is going to be about the Patients At Parliament protest arranged by United Patients Alliance (UPA) next Tuesday so, after drinking tea and Nutriblast and walking the dog, I visit the UPA website and start writing a script.

I film myself without too much trouble (half a dozen re-takes) – my voice isn’t too bad today.   I have more of an issue with using the trackpad on my MacBook because of tremor.  I take a good dose of CBD oil, which chills me out considerably – I am not any quicker with editing my video, but I just don’t care!

I have finished editing, loaded the finished video to my YouTube channel, published it and posted links to it on Facebook, Twitter and Instagram by the time my wife gets home from work.

Time for dinner, a beer and an episode of Dexter on Netflix.

I’m feeling weary today.  We had a little bit of a late night last night (we went to see Living Colour play at The Waterfront in Norwich), but neither my wife or I had a very good night’s sleep.  I think the ringing in our ears must have kept us awake.

My wife has a sales rep calling at the house this morning (in connection with her soft furnishings business), and is then going to fit a futon cover they she has made for one of our neighbours – I’m going to be with her (on both occasions) for moral support.

The sales rep arrives, armed with plenty of fabric samples – I struggle to suppress my yawns (because I’m tired, not because I’m bored).   Once he has departed, my wife and I wander around to our neighbour’s house with the new futon cover and spend the next few hours fitting it and installing buttons – my wife does the majority of the work; my role is to watch and make encouraging noises.

I have been contacted by the United Patients Alliance (UPA) regarding a demonstration outside Parliament next Tuesday, about the legalisation of cannabis for medicinal purposes.  I have been invited to join the demonstration as a guest of the UPA, and they would like me to talk to the media about my experience in testing my Parkinson’s Disease with cannabis.  I happily agree to join them, and book train tickets to London for my wife and I.

I’m feeling less motivated today, and my left leg tremor is bring a nuisance again.  I email the DBS nurses at the NHNN and request an appointment to have my device reprogrammed in a couple of weeks time.

I received a letter from the hospital last week, informing me that an appointment has been made for me to see a neurologist there next year, at a time that is completely unrealistic for me to attend (given that I would be travelling by train from North Norfolk) – so, I call the hospital and cancel it (I would have rearranged it for a more convenient time, but I was told there were no afternoon appointments available).

My wife and I are going to see Living Colour at The Waterfront this evening, so I locate our e-tickets and print them off.  I’m hoping to get a seat provided (The Waterfront is a “standing only” venue) – at least the box office told me that they would provide me with a seat.

Autowerke called me to let me know that my car will be ready for collection tomorrow at some stage, provided I pay them an eye-watering sum of money – I can’t really complain because I have owned the car for almost 4 years (and coming on for 30,000 miles) now, and this is the first major bill that I have had.

The dog takes me for an afternoon stroll around the field by the village hall, and then I start getting myself ready to go out.

Living Colour are absolutely superb (as expected), and we have a thoroughly enjoyable evening out.

Another attempt to clean the lounge windows is required – I thought that I had done a decent job of it yesterday, but then I noticed the streaks that I had left…  I clean them again with plenty of soapy water, but the streaks remain.   I resort to chemical warfare (again) and use some Mer polish that I found in my car cleaning collection of chemicals the other day – I always used to use it for cleaning the insides of car windows, so it should be good for house windows, too.  It takes a good deal of elbow grease, but the Mer does the trick and the streaks are history.  While I’m at it, I clean the windows (inside and out) in or bedroom, which my wife had told me needed cleaning.

I deal with one of the emails that had been lurking in my inbox for the last week or so, and send a reply.

I print of a sheet of labels with my wife’s soft furnishings business details on them, for her to label up her fabric sample books.

I receive a FaceTime call from my son, who has just arrived in Manila in the Philippines, the second stop on his year (or more) of travelling.

I apply some more Viakal to the limescale stain on the front wall of our cottage – at this rate it’s going to take a long time (and lot of Viakal) to remove it.   My neighbour tells me to try some brick acid (when I bump into him whilst taking the dog for her afternoon walk) so I’ll have to procure some and give it a go.

I’m definitely feeling more motivated these last couple of days, but I don’t seem to be achieving a great deal – still, something is better than nothing. My voice is a little less weak today, my tremor (left leg) is still milder than it has been lately, and I seem to have a tad more energy. Walking and balance are still improved, and my muscular aches and pains have abated.  Things are looking up!

I start the day by trying to give away a ticket to a Belinda Carlisle gig – I purchased the ticket a while ago, and then realised that I already had a ticket for a Living Colour gig on the same evening.  I can’t believe how difficult it is to give something away!  Eventually, I find a taker (my eldest nephew), so at least it won’t be going to waste.

I’m feeling a little (just a little) bit more motivated this morning, and decide to clean the lounge windows (which are covered in water stains and gunk from when I pressure washed the front of the house on Saturday) when I return from the morning dog walk.  While I’m at it, I wash the front door and door frame – that’s better!

My walking and balance are also improved today, and the tremor in my left leg is much milder than it had been of late.  My voice is still pants, though.

I catch up on my social media messages, and reply to them as necessary.  I have a couple of emails that I need to respond to as well, but I’ll attend to those tomorrow…

My wife arrives home from work while I’m applying chemicals to the limescale stained front wall of our cottage, so I finish up and give downstairs a taste of the vacuum cleaner while she goes for a run.

Predictably, I am feeling the effects of my exertions yesterday.  I ache all over, and I’m pretty low on energy.

My wife takes the dog for her morning walk while I sit on the sofa drinking my tea.

I inspect the stained front wall of our cottage (limescale caused by an overflow, that I spent several hours trying to remove yesterday).  It’s better than it was, but I think chemical warfare is probably justified as the next step.  I try spraying a couple of the bricks with Viakal (a household limescale remover) and leave it to soak for an hour or so while we go to Lidl in North Walsham to do as little grocery shopping and to buy a bottle of wine for our neighbour as a little thank you for loaning us his heavy duty pressure washer yesterday.

When were get back home it is quite obvious which bricks I sprayed with the Viakal, so I intend to try cleaning the rest of the stained brickwork with it later in the week (weather and energy levels permitting).

My wife goes to the allotment to do some weeding and planting, and I take the dog for her afternoon walk.   My walking is definitely a little stilted but my balance is better than it was yesterday evening.  My voice is fairly weak and slightly slurred – I am making a conscious effort to project it so that I can be heard.  Left leg tremor is an almost constant companion, but a little cannabis should sort that out.