Author: Ian

My wife is looking after both of our granddaughters for a few hours this morning, so I drive over to Hevingham to join her (after walking the dog) which helps with keeping my mind off things for a little while.

I return to Southrepps around lunchtime and decide to split a few logs, fill the log basket and then vacuum downstairs to keep myself busy.

I take the dog for her afternoon walk, intending to light the woodburner when I got back indoors, but the exertion has warmed me up and I no longer feel the need.  I wait until I’m starting to feel the chill, and light the fire in plenty of time to make the cottage nice and toasty by the time my wife gets home.

Today has passed in a bit of a haze.  My wife has been running around after me (as usual, but even more so) making me drinks, checking that I’m okay, not wanting me to do anything.

I send messages to my two brothers to make sure they’re okay, and then prod my younger brother into action – we have to make an appointment at the local registrar’s office to register my mum’s death, start organising the funeral, complete various pieces of official paperwork, notify various official bodies.   My brother calls the registrar’s office and makes an appointment for Thursday morning.

I accompany my wife to work, just to keep myself busy and take my mind off things.  My wife finishes work early and we return to Southrepps where my wife walks the dog and I light the woodburner.

My elder brother summed it up when I sent him a message (he lives in Nova Scotia) to let him know that our mum had passed away.  “The world feels a little emptier today” he said – and so it does.

Our mother finally gave up the fight against Parkinson’s Disease, and slipped away peacefully this morning.   My heart (and those of my two brothers) is broken, and this world will never be quite the same again.

My wife is busy baking a wedding cake for her youngest son’s wedding this morning, so I busy myself responding to the many messages that I have received on social media, and then I take the dog out for her morning walk.

This afternoon we drive over to Stalham again to sit with my mum for little while.  She is still warm and comfortable and unconscious.  We chat away to her, and stick a Tom Jones album on the record player.

My speech is getting quite slurred on my current settings (group “B”), so I change over to group “A” settings for while, and my voice gets a little clearer – the annoying tremor in my left leg remains.

It’s getting chilly by the time we return to Southrepps, so I fill the log basket and light the woodburner after walking the dog again.

My daughter and I are spending some more time with my mum today, so after the dog has been walked, we’ve had cups of tea/coffee and breakfasted on bacon and eggs, we drive over to Stalham.

Mum is much the same as she was yesterday – unconscious, but warm and comfortable and not in any pain.  My daughter and I talk to her about family members who have sent their love, hold her hand, tell her how much she is loved…

Eventually we return to Southrepps to have some dinner, before my daughter has to leave and drive back to York where she is at university.  She’s glad that she got to see her grandmother, and I’m pleased that it has given her some comfort.

I have had so many messages of comfort and support from people who subscribe to my blog and my vlog, from people who belong to the same Parkinson’s groups on Facebook that I do, as well as from friends and relatives – it is very touching, and very much appreciated.

A difficult day.  My vlog this week is about saying goodbye to my mum, who is fast approaching the end of her life.  I didn’t want to do it initially – I didn’t think if be able to do it.  I sat on the sofa when I got back from walking the dog, and started writing a script.  Once I got started, the words flowed readily enough, and I soon had something that I thought I could film without getting too emotional.

I filmed myself in short bursts – taking time out to compose myself when I felt myself struggling.  I edited it as best I could, uploaded it to my YouTube channel and published it.

I walk the dog again, and then drive over to Stalham to sit with my mum for a little while.  My daughter is driving down from York this evening, wanting to say her goodbyes to her grandmother, and I wanted to be sure that she wouldn’t be too distressed by her appearance.  Mum is unresponsive, and appears to be peacefully asleep, her breathing getting shallower with each passing day.

My daughter arrived around 10pm and we went to Stalham straight away.  Mum seemed comfortable, and my daughter said that she thought she had reacted to her voice, so that was a comfort to her.

It’s another day (or at least part or it) of sitting with my mum, so I drive over to Stalham as soon as I have taken the dog for her morning walk.  She’s much the same as she was yesterday, not giving any indication that she is aware of me being there.  They do say that the sense of hearing is one of the last things to desert us when we leave this world, so I talk to her about her grandchildren, tell her that I love her, and battle with the lump in my throat.

At 2pm I have to take my leave of her and dash back to Southrepps.  I’m having a trailer-load of logs delivered and have to be there to move them off the road and into our back garden.  The logs arrive, and I load them into my wife’s pink wheelbarrow and take them into our back garden and stack them against the garden wall.  By the time I finish, it’s getting dark and I’m extremely grateful to a couple of my neighbours who see me struggling and come to my aid – I thought that I would have sufficient energy to do it all myself, but I was wrong.

A hot bath and a shave make me feel (slightly) more human again.

I go to Stalham today (after walking the dog), to sit with my mum.   She has advanced Parkinson’s, has been semi-comatose for a number of days, and now appears to be giving up the fight for life.  I can’t say I blame her, really.  She has had a hard few years, with Parkinson’s taking not only her ability to do the simple things in life that gave her so much pleasure (leaving her unable to walk the half mile into town, or tend the vegetable patch in the back garden), but also her dignity and her will to live.   She said to me recently, when she was having a particularly bad day, “It’s not worth going on, is it?”, and I found myself unable to disagree with her.

Yesterday, mum was aware that I was there – she reacted to my voice, she opened her eyes and saw me.  Today she just appeared to be asleep all the time that I was there – there was no reaction when I spoke to her or held her hand.  It’s very hard to sit and watch someone that you love fade away before your eyes.

To those people who have reached out to me with messages of support (you know who you are), I thank you from the bottom of my heart for your kind words.

I have to take my car to East Bilney Coachworks today, so that they can rectify some dodgy work that they did.  I wait until rush hour is over, and then drive the 20 miles or so to their depot in Norwich.

Whilst I am completing the necessary paperwork, I get a call from my younger brother telling me that our mother is seriously ill and that I need to go to see her as soon as possible.   I pick up the courtesy car that the garage is loaning me, drive home as quickly as (legally) possible, walk the dog and then get myself over to Stalham to see mum.

My mum has advanced Parkinson’s Disease and has been in a semi-conscious state for several days – a state that she has been in (and recovered from) on a couple of previous occasions.  This time is different, and it really is looking like this is the end of the road for her.  She recognises my voice and knows that I’m there.  She sees me, but she cannot talk and can scarcely nod her head in response to any conversation directed towards her.   She hasn’t eaten for days and her fluid intake is practically nil.  Her doctor says that she is comfortable and not in any pain, and says that she is better off where she is rather than sending her to hospital.   It breaks my heart to see her this way, and I hope that the end comes swiftly, for her sake.

I (and my wife) sit there with her most of the afternoon, playing her old Tom Jones records to her on her record player, until we have to return to Southrepps to attend to the dog.

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.

The previous owner of our cottage allowed the cold water tank in the loft to overflow and run down the front wall of the house for so long that it stained the brickwork white with limescale.  I have previously tried to remove it using white vinegar and a wire brush (to no avail).   One of my neighbours offered to lend me their heavy duty pressure washer to see if that would shift it, so this morning (after I walk the dog) I give it a go!   I spend the next three hours pressure washing the front wall of the cottage, ending up soaking wet and covered in fine grit – terrific!  To be fair, it has reduced the staining significantly, but it certainly hasn’t removed it.

I pack the hoses away and return the pressure washer to my neighbour.  Since I’m already wet, I decide to give my wife’s car a quick wash – I know how much she likes her car to be clean, and she is busy cleaning our cottage and doing laundry so it seems only fair.  I’m already knackered, but I think I can summon up the energy.

I take the dog for her afternoon walk, and then collapse onto the sofa in the lounge, thoroughly exhausted.

A long soak in a hot bath, followed by a little cannabis and a beer, and I’m feeling almost human again.

I have decided on my subject for this week’s vlog – it’s going to be about people that are affected by Parkinson’s, other than the person that has Parkinson’s, and will revolve around my current lack of motivation.   Having said that, I have managed to motivate myself to produce a vlog today, so there is a vestige of motivation in me (somewhere).

I have my cups of tea, walk the dog, listen to PopMaster and then drink my Nutriblast whilst writing the script for my vlog.  I set up the camera and tripod in the lounge, load my script into the teleprompter app on my iPad, and then film myself.   My voice is evidently stronger this week, because I have few problems with the filming, so fewer re-takes which all makes the process of transferring the raw footage to my MacBook and editing it much more straightforward (and much quicker).

By the time my wife gets home from work, I’ve finished the edit and am uploading the finished video to my YouTube channel.  I’ve also put our dinner in the oven, so gaining me some Brownie points.

I’m sorry to say that motivation hasn’t returned as yet.  The end of the day is looming, and achievements are pathetically thin on the ground.

I drove to the outskirts of Norwich this morning (narrowly missing the rush hour) to leave my car at Autowerke for servicing and a whole host of other minor tasks.  My wife picks me up from the garage and I drop her off at her workshop in Hevingham so that I can borrow her car for the day.   Hardly an hour has gone by before I receive a phone call from the garage – never a good sign!   The mechanic has found a major leak on the gearbox that requires urgent attention, the exhaust has a hole in it and there is quite a lot of brake pipe that needs to be replaced (otherwise it will fail its MOT test).   Basically I’m being warned to expect a big bill!  What can you do?   The work has to be done, or the car is useless…

I take the dog for her morning walk (one of my achievements) and then listen to PopMaster (not an achievement, but an essential part of my daily routine).

I empty the dishwasher and tidy the kitchen (a bit, but it’s really not that untidy, to be honest).

I have a think about a subject for this week’s vlog, but I’m still undecided.

I read The Metro online to catch up with the news.

I take the dog for her afternoon walk (another achievement) and then sit and wait for my wife to phone to let me know she’s ready for me to go and pick her up from work.  We return to Southrepps via Lidl in North Walsham to do some grocery shopping.

When we get home, I prepare our evening meal (more leftover chilli con carne) and pop open a bottle of beer to enjoy with another episode of Dexter on Netflix.

I need to locate a box full of service parts for my car today, otherwise my service is going to cost considerably more than it should.  I know the box is in the house, so there is a limit to how difficult it should be to locate – at least, I thought so.

I spend quite some time in the loft, shifting boxes around to see if my service parts box is hiding behind them.  By the time I have finished, I’m pretty certain it’s not in the loft.

The spare bedroom is next – there is all manner of stuff under the bed, so I spend a while scrabbling around under the bed until I’m almost sure that what I seek isn’t there.

There’s a cupboard full of boxes in the main bedroom, so I do what I can to search through them without actually emptying the cupboard.  Doesn’t appear to be in there, either.

I check in the conservatory.  No.

In desperation I check the garden shed.  Nope!

I’m running out of places to look, but there’s a small landing through a door in the main bedroom – it’s piled high with boxes, and it’s my final hope.   The door to the landing is inaccessible at the moment, so I clear a path to the door.  I lift a box from the top of the stack to reveal… my box of parts – success!!   That means that I don’t have to ask my wife to find it when she gets home!

I bump into one of our neighbours when I take the dog for her second walk of the day, and broach the subject of some curtains for some French windows that they have been discussing with my wife.   The husband doesn’t want a curtain, but the wife does, and she has told my wife to ignore her husband and to make the curtains.  My wife feels stressed by being caught in the middle, and asked me to discuss the situation with the husband, when I had a chance.   After a lengthy discussion with him (and his wife), it seemed that the situation was unchanged – he doesn’t want curtains there, and she does.   “Where does that leave us?” I asked the husband, as we walked away from the battlefield.  “Nowhere!” he replied, “tell your wife we don’t want a curtain, although I may have to change my mind if my wife insists!”.   I think his wife will insist, but the current situation is hardly likely to alleviate the stress that my wife is feeling.

My motivation is still down the toilet, but I have managed to achieve something today, so I don’t feel too wretched.  Tremor in my left leg is becoming a real nuisance, and I have no further adjustment available to me on group “A” settings (my old settings).   I try changing my neurostimulator to group “B” settings to see if I can adjust out my tremor that way, but I can’t, so I revert to group “A”.  I think I’m going to have to return to the hospital for a re-tune in the next couple of weeks.

I have a quick tidy up before my wife gets home, and put dinner on (leftover chilli con carne).  I take some CBD oil to see if that will help my tremor, and then we settle down in front of the telly to watch another episode of Dexter on Netflix.

Another day of battling with my (almost) non-existent motivation.

I need to change the day that I have my car booked into Autowerke because my wife is on a course in Cambridge that day, and isn’t able to pick me up from the garage.  I also need to get cracking on the process of changing the supplier of electricity for our cottage – our current contract expires in just under 3 weeks, so time is running out!

I have my cups of tea and my Nutriblast, and take the dog for her morning walk (for which the dog supplies the motivation).

I listen to PopMaster.

Lunchtime comes around, and still I haven’t achieved anything.

I ring Autowerke, and arrange to drop the car off on another day.  There!  Done it!!  Give the man a medal!  I just need to find the box with all of the service parts in it, but at least I now have some extra time to do so.

I call the energy company that I researched and selected yesterday, only to find that the fixed rate contract that I wanted is no longer being offered, so now I need to do some more research and select another energy company – nothing is ever simple or straightforward, is it?  I select an alternative energy provider after a couple of hours of research, fill out my details online and start the process of changing our supplier.

My wife asked me to hang some washing out to dry when the washing machine cycle had completed.   I completely forget to do so until the dog starts reminding me that she is due for another walk.   She waits (impatiently) while I unload the washing machine and hang the clothes out on the line in the back garden.

I walk the dog and then vacuum downstairs before my wife returns home from work.

I’m having a battle with motivation at the moment, and it’s not a battle that I’m (currently) winning.

“Is there anything you want me to do?” I asked my wife this morning, as she was getting ready to leave for work.  “You could order the side panel for the bath” she replied.  A simple enough task, you would think, but I’ve been trying to achieve it all day, and its now almost 5pm and all I have done is measure the bath so that I know the size of panel to order…

On the plus side, I have booked my car into Autowerke for a service and brake pads this Thursday – I’ve been trying to achieve this since the beginning of last week.  I have also selected a new contract for our electricity supply at the cottage – our current contract expires in just under 3 weeks – now all I need to do is actually call the energy company and set the wheels in motion.  Tomorrow, perhaps.

I searched around for a late availability holiday for my wife and I – it’s our wedding anniversary next month, and we decided that it would be nice to celebrate that somewhere warm.  I haven’t selected a holiday yet, but I do have better idea of where we should go.  I’d better check that my passport hasn’t expired!

I took the dog for her two walks today, and that’s about the extent of my achievements for the day.

Don’t ask me why I’m struggling to perform some pretty basic tasks, because I don’t understand it either.  I just know that I’m struggling.  I have a whole list of basic tasks that I need to do, and no idea when I’m going to be able to get them all done.  I just hope that I can make some sort of progress before my wife loses patience with me.

I have the job of entertaining my son and his friend today – they are embarking on a trip to Australia (via Hong Kong, the Philippines, Malaysia and Bali) next Friday, so they are here for a couple of days to say goodbye – I don’t expect to see them back here much before Christmas 2018.

They are keen to have a trip out in my car (an old Porsche 911 that evidently still retains a little “street cred”) so we decide to drive to the outskirts of Norwich to fill up with petrol.  We stop off at Lidl in North Walsham to grab a few bottles of beer, plus some flowers and chocolates for my wife as a thank you for all of her hard work.

We have a bite to eat (cheesy chips) and a beer for lunch in The Vernon Arms, and then decide to head over to our boat at Wayford Bridge and go for a little cruise down the river.

My wife cooks us all an evening meal, and then my son and his pal take their leave of us.

I calm the left leg tremor (which has been bugging me all day) with a little cannabis, pop open a bottle of beer and watch an episode of Dexter on Netflix.

We have more visitors!  My son and his friend are travelling up from Dorset to visit us today, so the house has to be clean and tidy, and the spare bedroom, which is currently full of tiling tools, video equipment and boxes of pictures that were haven’t yet got around to hanging on the walls – suffice to say, the bed is inaccessible and that’s a state of affairs that requires rectification!

I deal with the video equipment, and vacuum (and mop) the floors downstairs while my wife does everything else.

My son and his pal arrive, and were have a couple of hours of catching up before my wife and I leave them for a few hours – we are going to see Bush perform at The Waterfront in Norwich.

So, we leave my son and his pal in our cottage watching Top Gear on Netflix while we watch some excellent live music.   I manage to arrange for a chair at the venue – The Waterfront is standing only – which I’m very grateful for.   I realise, on the few occasions that I stand up to get a better view, that there’s simply no way I could have stood all the way through the gig.

I’m up early this morning – I’m picking up our friend, Karl Sterling, from his B&B in Mundesley and taking him to Gunton station to catch the 8.45am train back to London.

I arrive at the B&B on the dot of 8.20am, as arranged, and we are at the station in plenty of time.

Its vlog day today, and I’ve decided to make a departure from my usual subjects of Parkinson’s Disease and medicinal cannabis.  One my YouTube followers has been asking me for quite some time to do a vlog about me, my car, where I live, etc., so I have decided to do just that.   I wander around the village with my video camera, shooting life in Southrepps to go with some video that I shot yesterday while I was out and about with Karl.

When I have a rough idea of what I’m going to show, I write myself a script to link the various shots together, and then film myself.  I have a few problems with my voice initially (weak and strangling my sentences) resulting in a few re-takes but, generally speaking, I have fewer problems than I usually have when I film my vlog.

Editing is far more complicated than when I’m just doing a straightforward piece to camera, and I still haven’t finished when my wife arrives home from work.  I finish it off and upload it to my YouTube channel while my wife goes to Lidl in North Walsham to get some groceries.

I’m feeling shattered after quite a late night last night, so I plan to have a reasonably early night tonight!

Today were are being visited by Karl Sterling, who is in the UK for a few days, teaching his Parkinson’s Regeneration workshop in London.  My wife is up early (6.30am) cleaning the house and putting the final touches to a chocolate pudding that she made last night (Karl is coming to dinner this evening).

The dog and I enjoy an early stroll around the field, and then I make a Thai curry for this evening’s main course, before driving to Gunton station to meet him from the train.

Karl and I hang out for the afternoon, filming an interview in our lounge, driving out to Cromer and taking a walk along the beach, taking the dog for a walk around the field by the village hall, and ending up with a couple of pints of Abbot Ale in The Vernon Arms.  We retire to our cottage across the road just as my wife gets back from work, and have an evening of curry, chocolate pudding, beer and wine!

I have to take my car to a garage in North Walsham for 10am to have a couple of new tyres fitted, so I’m up at a reasonable time so that I can drink my tea and take the dog for her morning walk before I have to leave the house at around 9.30am.  I’m aching all over from my car cleaning activities yesterday – the discomfort I’m experiencing seems disproportionate to the effort of cleaning the car!

The tyre fitter takes great care of my car – I’m sure they take more care when working on a car that is clean and shiny, so that makes my efforts of yesterday worthwhile.

I planned to clean the inside of my car this afternoon, but I hadn’t anticipated quite so much muscular pain, so I end up just vacuuming inside – upholstery and window cleaning can wait for another day.

While I have the vacuum cleaner out, I vacuum downstairs in our cottage, and then have a tidy up before my wife gets home from work.

I take some CBD oil this afternoon to see if it’ll help with my aches and pains – perhaps I didn’t take enough, because I’m not feeling the effects at all.  l have some whole cannabis after dinner to see if that helps, and that certainly relaxes my muscles.

I perform my morning ritual/duties (2 cups of tea, Nutriblast, dog walk, PopMaster) and decide to go to Wayford Bridge to check on the boat – I noticed there was rather a lot of water in the engine compartment when were went out with my wife’s parents and brother last weekend, and I’ve been worrying about it.  The water is still there, but there doesn’t appear to be any more than there was last week, so that’s a relief!  I siphon the water out of the engine compartment into the bilges, and let the bilge pump empty the bilges into the river.  I run the engine for twenty minutes or so to charge the batteries, and then I’m done.

Back at Southrepps, I decide to give my car a wash and polish.  It’s having two new front tyres fitted tomorrow morning, and I think that the tyre fitter will take more care if the car is nice and clean and shiny.  I spend almost 3 hours washing and polishing, and the car is looking good.  I’m completely knackered – I might just have overdone it (as usual).

The dog is asking me to take her for her afternoon walk, and all I want to do is collapse onto the sofa and recover.  The dog wins, and I stagger around the field by the village hall with her.   Fatigue has accentuated my slightly dodgy balance and wooden walking.

I sit and recover for half an hour, and then tidy up the mess I’ve made with car cleaning stuff, and vacuum downstairs before my wife returns home from work.

I need to organise a few things this week.  My car is due for its MOT test next Monday, and it’s overdue for a service, needs brake pads replacing all round and the front tyres need replacing.  An added complication is that Karl Sterling, an American fitness trainer who specialises in people with Parkinson’s, and whom my wife and I met in London earlier this year, is visiting us this Thursday, and my son and his friend are visiting us on Saturday and Sunday, so i can’t really afford to be without it!  I guess I’ll try to book it in for a service and brake pads next Monday, MOT test straight afterwards, and get the tyres sorted in the meantime.

I consume tea and Nutriblast and take the dog for a walk before searching on the internet for car tyres (whilst listening to PopMaster).  I bag myself a pair of Michelin’s at a bargain price at BlackCircles.com, and get my car booked in to have them fitted on Wednesday morning.   I price up the brake pads from Euro Car Parts and consider fitting them myself – there are plenty of videos on YouTube showing how easy it is to do, and prior to my Parkinson’s Disease I wouldn’t have dreamed of paying someone else to do them – but it’s not prior to Parkinson’s, and I decide to let the garage do them when they do the service.

The day has magically disappeared without me really having achieved very much, but that’s hardly unusual these days…

We had a bit of a disturbed night last night  my wife’s youngest son’s fiancee had a funny turn and ended up by being taken to the Norfolk and Norwich Hospital by ambulance.  Naturally, my wife’s youngest son accompanied her, leaving my wife and I (but mainly my wife) to look after our youngest granddaughter until they returned.  So, we spent the night camping in their lounge – sleeping on their sofa.  I slept surprisingly well, although my wife didn’t!

The invalid and her fiance arrived home at 5.30am, having been subjected to a multitude of tests but they were unable to determine what was wrong with her.  She was still a little shaky, but a whole lot better than she had been!

We headed back to Southrepps around lunchtime.

My wife spent the afternoon cooking lentil curry for our dinner, In between ironing all of the laundry that she washed yesterday.  I walked the dog and vacuumed downstairs and upstairs.

I’m feeling extremely tired today, so I’m quite pleased that my other symptoms are not playing me up too much – a touch of tremor in my left leg, voice a little on the weak side, nothing much to complain about.

Today is our eldest granddaughter’s birthday party, and we are going to Hevingham village hall to help set up tables for the food, and toys for all of the children to play with.

Before we leave the house, my wife is busy cleaning the house and cooking party food, and I am fully occupied posting links to my latest vlog on Facebook, Twitter, Instagram and several online forums that I subscribe to.

My tremor is playing up this morning, making it difficult for me to use the computer, but I persevere and get there in the end.

It’s been raining heavily for the early part of the day, but by lunchtime it has stopped and the sun puts in a welcome appearance.

I take a little CBD oil before we go out, hoping that it will help to relax me a little.  It does!

We have a noisy afternoon in the village hall with a dozen or so toddlers.  Noisy, but fairly entertaining.

My wife and I help clear away the debris when the party is over, and then we retire to my wife’s eldest son’s house where we plan to have a couple of beers and order a Chinese takeaway.

Another day of rain.  Its cold and grey, and raining heavily in Southrepps this morning.  I take the dog for a quick walk at around 9am when it stops (briefly).

I have my weekly vlog to do today – I have usually selected a topic by now, and even done some research for the script.  I have two topics in mind, and did do a little research (on both topics) yesterday, but I really need to make my mind up and get a move on!

I decide to talk about heavy metals and their role in Parkinson’s disease – this is an easy one for me, so the problem is going to be keeping the video to a watchable length.  I like to make my vlogs between 5 and 6 minutes long but I just know they this one is going to overrun.  I write the script off the top of my head, partly from the research that I did yesterday, but mainly from my experiences with dental metals.  My voice is playing me up a bit, so I change my neurostimulator over to group “B” settings for a little while.  I actually try to film myself whilst still using the group “B” settings, but my eyes are clenching themselves shut and I feel distinctly odd, so I change my device back to group “A” settings and start again.  I manage to film myself without too much trouble, although I have a fair few retakes.  I load the raw footage onto my MacBook and crack on with the editing.

My wife arrives home from work, and I’m still not finished.  I manage to complete the editing while she goes out for a run, and then I upload it to my YouTube channel while we eat our dinner and catch an episode of Dexter on Netflix.

It’s a miserable grey morning in Southrepps – overcast and pouring with rain.  Most uninspiring!

I’m generally feeling uninspired today, and can’t seem to conjure up the enthusiasm to do anything.  So, today is a bit of a write-off.

It stops raining almost long enough for me to take the dog for her morning stroll.  We do get wet, but not too seriously.

I decide upon doing some research for my weekly vlog, but by the end of the afternoon I still haven’t written any of the script – I’ve done plenty of reading (online), but I’m torn between two different subjects (and still haven’t made my mind up which one to choose).

The weather brightens up this afternoon, and the afternoon dog walk is quite pleasant.

It’s our eldest granddaughter’s 2nd birthday today (time flies!) so my wife returns home early from work, we have an early dinner (chilli con carne leftovers from yesterday) and go to Hevingham for the evening, to give the birthday girl her presents.

I have a stack of admin tasks that are awaiting my attention, and which I have been (subconsciously) avoiding.   I decide to make a list of them and try to tackle one or two of them today.  It’s a day for staying inside, in any case its blowing a gale outside this morning (the tail end of storm Aileen, not quite hurricane Irma, but damned windy all the same) and it’s pouring with rain all afternoon.

I reply to a couple of emails that have been waiting for me since last week, sort out some information for my daughter (that she’s been waiting for for far too long), pay the river licence for our boat (that should have been paid in April), and start researching electricity prices (we are currently on a fixed tariff contract which expires next month).

The dog gets her walks in between rain showers.

Feeling better than I have done for some time, I make dinner (chili con carne), which surprises and pleases my wife when she gets home from work.  It even tastes pretty good!

I’m going to the dentist this morning.   I broke a tooth last November when we were on holiday, and today is the day that the broken stump is going to be removed (it’s too far gone to be crowned).  Because I have had Deep Brain Stimulation surgery, there are one or two precautions that are required, the main one being that I need to take a prophylactic antibiotic an hour before my appointment.  So, at 8am I swallow a gram of amoxicillin, washed down with my morning cup of tea.   A quick trip round the village hall field with the dog (who, thankfully, got through the night without being ill, like she was while were were out for the evening yesterday) and then I’m out of the door.

I’m in Aylsham for my appointment at 9am, and I’m soon  reclined in the dentist’s chair, receiving my shots of local anaesthetic (which, because I’m having a molar removed, are right at the back of my mouth and are extremely uncomfortable) followed by a quick x-ray.  My left leg had some tremor in it (as is usual these days) but the stress of the situation (I never even realised that I got stressed when having an injection) has me shaking pretty much all over, which isn’t very pleasant.   While we are waiting for the anaesthetic to take effect, my dentist prepares one of my other teeth for a new crown.  Then, the bombshell news that the x-ray shows that the roots of the tooth are very curved and really should be surgically removed, rather than simply being yanked out (as has been the plan) – so, I am to be referred to another dentist for a surgical extraction, meaning that the prophylactic antibiotic was unnecessary and the numb jaw that I’m now experiencing is a complete waste of time (and discomfort).  I am a little peeved, but these things happen…

Back in Southrepps, I check social media and respond to a few messages and comments that I have received, and wait for my face to feel normal again.  The anaesthetic wears off by lunchtime, and my mouth feels pretty sore where the dentist injected me, so I try a little cannabis to soothe the discomfort, which works very well!

I spend the morning finishing my contribution to Karl Sterling’s book.  Karl is a fitness trainer who specialises in training programs for people with Parkinson’s.  He is writing a book about his fitness regime for Parkinson’s, and asked me if I would be prepared to write a few pages on my experiences.  His deadline is today, so I need to finish writing and email it to him as soon as possible.  My wife read through what I had written last night, and came up with a few suggestions for improvement, so I incorporate the improvements and email the finished document to him.

I then shop around online for a cement board panel for the side of the bath, something I have promised my wife that I will do this week – another item crossed off my list of things that I need to achieve.

It’s my wife’s ex-husband’s birthday today, so my wife and I are joining him for a takeaway curry this evening at their eldest son’s house.  The curry is excellent, as is the company, and my wife’s ex-husband liked the very rude card and gift that we had chosen for him, so the evening was a resounding success.

When we get back to Southrepps, we find that the dog had eaten something that had disagreed with her (Labradors will eat virtually anything) and had deposited the contents of her stomach on the kitchen floor.  Thankfully the kitchen floor is tiled, so the cleanup operation was relatively easy!

Today we are entertaining on our boat.  My wife’s mum, dad and brother are joining us for a little cruise down the River Ant and a bite to eat.

Before we go to the boatyard, my wife walks the dog, gets some essentials together (tea, coffee, butter, etc.) to take to the boat with us, and bakes a sponge to make her ex-husband a birthday cake.  I spend the morning checking my social media accounts and replying to a number of messages that I have received.

We pay a visit to Lidl in North Walsham (to get some milk and beer) on the way to Wayford Bridge, arriving at our boat in time to give it a bit of clean and tidy before our guests appear.

Tremor is reasonably well contained (apart from my left leg, which is dancing a little jig to itself), voice isn’t too bad, balance and walking are okay.  I’m feeling very fatigued, though, and by the end of the afternoon my voice is slurring with tiredness (I only had one beer, so it definitely wasn’t alcohol induced).

The weather, which hasn’t been wonderful today, lets us down as we set off back up the river, and it rains all the way back to our mooring at Wayford Bridge.

We take leave of our guests (who appear to have thoroughly enjoyed the afternoon on the river – even if it did rain) and pop over to see my mother (who has advanced Parkinson’s) in Stalham.   She seems in quite good spirits, although she tells me that she has had a few falls this past week, and has damaged her hand which looks swollen.

By the time we get back to Southrepps it is dark (and still raining quite heavily).  My wife finishes off making her ex-husband’s birthday cake while I loaf around on the sofa drinking beer.

I’m having a lazy day today.  My wife is busy with doing the laundry, while I sit on the sofa trying to do a bit more of my contribution to Karl Sterling’s book.

I take the dog for her morning walk while my wife goes for a run, and then we wander down to our allotment to do some weeding and to harvest some courgettes, tomatoes, spinach and weirdly shaped carrots.

It’s my wife’s ex-husband’s birthday on Monday, so we need to find a present for him.  We decide to go into North Walsham to look for a gift.  We swiftly find something suitable, along with the perfect birthday card (I’d put a picture of it on here, but it’s just too rude!).

Back home, I spend some more time working on my contribution to Karl’s book (deadline is this Monday!) before we settle down in front of the telly for the evening.

I have a busy day ahead of me.  I am meeting with a production company film crew at Norman Lamb’s constituency office in North Walsham this lunchtime, where I am going to be filmed interviewing Norman for the documentary “The God Plant“.

Before I do that, though, I do have some other things to do!  I consume tea and Nutriblast, walk the dog, change into clean jeans and shirt, have a shave and then listen to PopMaster.   I’m a bit concerned about my voice this morning, so I change my neurostimulator to group “A” settings (which give me a stronger voice, but make me feel a bit “on edge”).   I tolerate the settings for about half an hour, and then change back to group “B” settings.

I drive to North Walsham, and meet the film crew for a quick cup of coffee before we carry all the cameras, stands, lighting, etc. into Norman’s office to get it set up before he arrives.

Norman arrives a little late, and we get stuck in straight away.  My policy of providing him with the questions in advance pays dividends, and his answers to them are well structured and considered.  My voice held up quite well, and I only had two retakes due to it strangling my sentences.  We take just under our allotted 30 minutes, pack the gear into the film crew’s car, and adjourn to the local cafe for another cup of coffee.

By the time I get back to Southrepps the dog wants her afternoon walk, so I take her.  I then upload my weekly vlog to my YouTube channel, publish it and post links to it on Facebook, Twitter and Instagram.

My wife arrives home from work soon after, and whisks me off to North Walsham (again) to do some grocery shopping in Lidl.

I am going to work on my weekly vlog today.  It’s a task that I generally reserve for Fridays, but this Friday I am going to be filming an interview with my local member of parliament, Norman Lamb, for the documentary “The God Plant“, so there’s a change of schedule.

I decide upon a subject (Repurposed Drugs For Parkinson’s Disease), and set about researching and writing a script.  My tremor seems fairly controlled, and my voice, although occasionally strangling my sentences, is a little stronger than it has been of late.   I still struggle with filming myself, though, and have many retakes.  Eventually I’m ready to load the footage onto my MacBook and get a move on with the editing.  Tremor is giving me a break this week, and that means that I have fewer problems when editing my video.

I take the dog for her afternoon walk, and then remember to send a list of questions to Norman Lamb’s office, so that he can be prepared – we only have 30 minutes of his time tomorrow, and it’s important that we get the most out of it.

I manage to finish editing my video before my wife gets home from work, which is always a good thing!

I’m going to continue writing my contribution to Karl Sterling’s book today, so I get the usual cups of tea, Nutriblast, dog walk and PopMaster out of the way, and sit myself down at the dining room table with my iPad.

I do manage to get some of my contribution written, but I keep getting distracted by other tasks, so I still haven’t finished.  Tomorrow I’m going to be busy with my weekly vlog, because I’m going to be busy interviewing Norman Lamb on Friday (my usual vlog day), so I guess I’ll have to finish off my contribution over the weekend (the deadline is Monday!).

I send a text message to the production company who are filming my interview with Norman – chasing up approval for the list of questions that I sent to them on Monday, and checking that they hadn’t forgotten that they were expected in Norfolk on Friday morning.  All is well – my questions are fine, and the crew intend to arrive before the appointed hour on Friday so that were can grab a cup of coffee before setting up cameras, lighting, etc.

I decide to take since high potency CBD oil this afternoon – I thought that I had been taking 1 gram doses up until now, and was quite disappointed that I hadn’t been getting much benefit from it.  Today I have my glasses on, and I realise that each graduation mark on the syringe indicates 0.5 gram, so I have only been taking half the dose that I thought I had (stupid boy!).  I take a proper 1 gram dose, and within half an hour I’m feeling the effects – very relaxed, and I have the munchies.

I’m going to tackle another one of my pending clerical tasks today.  Our friend Karl Sterling (who is a fitness trainer, specialising in people with Parkinson’s) is in the process of writing a book, and he had asked me if I’d be prepared to write a few pages about my experiences with PD for inclusion.  Of course I agreed to do so, but now the deadline is drawing near, and I really need to get a move on and write something!

So after drinking my morning cups of tea and my Nutriblast, walking the dog and listening to PopMaster, I sit myself down at the dining room table with my iPad and scribble away for several hours, until the dog reminds me that it’s time for me to take her out for another walk.  I haven’t achieved as much as I had wanted to, so it looks like I’m going to be busy finishing this off tomorrow (if not the day after, as well!).

My wife arrives home from work early, so we call in to see some close neighbours regarding some work that they want my wife to do.   The work aspect is quickly dealt with, and we sit in our neighbours back garden chatting and drinking wine until the evening starts drawing in.

I have a small stack of clerical tasks that I really need to do this week.  The most pressing is concerning my interview with Norman Lamb this Friday.  I have been making a list of questions to ask him, and want to review what I have written before emailing the questions to the production company (who are going to be filming the interview) for them to approve and add to.  I have promised Norman Lamb’s personal assistant that I will supply a list of the questions that I’m going to ask him, in advance, so that he can be prepared.  Time is running out!

Tremor and muscular stiffness and weakness are conspiring to make my typing slow and inaccurate, but eventually I’m happy that I have sufficient material to fill the 30 minute slot that we have been allotted.  I cut and paste my list of questions into an email, and send it to the production company.

I need to post a cheque to the Southrepps Parish Council in payment for our allotment for the next 12 months, and I have a number of packages to send out (eBay sales), so I package everything up, wander round to the village post office and have a good old chin-wag with the postmaster before taking the dog for her afternoon stroll.  I’m obviously getting tired (probably due to our busy day yesterday) because my walking is definitely significantly worse than it was when I walked the dog this morning – more of a stumble than a walk.

We are going out on our boat today with some friends of mine who are dropping in to visit us, so we’re up reasonably early today, because we want to get down to the boat and give it a bit of a clean before my friends arrive.

We drop into Lidl in North Walsham (to pick up some food to offer to our guests) on the way to Wayford Bridge, where our boat is moored.  My wife busiest herself with cleaning the windows while I check that we have sufficient diesel in the tank (we have) and make sure that the engine will start (it does).   Our guests arrive and we take a leisurely trip down to Barton Turf and back, with a pleasant interlude for feeding our faces.   I have plenty of tremor in my left leg today, but that doesn’t interfere with piloting the boat. My voice lets me down occasionally, but it’s not a complete disaster.

We tie the boat up and return to Southrepps, where we retire to the Vernon Arms for two or the pints of Abbott Ale and plenty of reminiscing.

My wife and I see our guests off and return home for an episode of Dexter on Netflix before bedtime.

I intended to get up early today, and post links to my latest vlog on Facebook, Twitter and Instagram before my wife gets up.  I’m awake at 6am, but that seems a little too early for a Saturday.  I’m awake again at 7.20am, and that seems a reasonable time to get up.  I fall back to sleep until gone 8am.  So much for an early start!

I get up, feed the dog and put the kettle on.  My wife appears, so I make the tea and coffee – the weekend has begun.

Some friends of mine are coming to visit tomorrow lunchtime. We intend to entertain them on our boat, but the house needs to be spick and span just in case the weather turns out to be grotty and we have to entertain them at home.  So I am on dusting and vacuuming duties (and dog walking) while my wife does everything else.

This afternoon we both do a little work down on our allotment – well, actually, my wife does quite a lot of work and I do a little work.  I spend about half an hour digging up weeds, and then I’m knackered and in need of a sit-down at home.

Tremor seems a little better today, although it was giving me trouble first thing this morning.  Voice is weak, but better than it was yesterday. Muscular stiffness and weakness are present but not giving me too many problems.  Balance and walking aren’t great, but at least I’m not falling over.  Mood and motivation are fairly low, but I am managing to get things done, so nothing too serious.

Beer, a pinch of cannabis, Dexter on Netflix followed by a reasonably early night.

It’s vlog day, and I have some challenges to face.  Firstly, I need to do some research and write a script, then I need to locate images and/or video snippets for the products that I’m going to be talking about.  This little task takes me all morning and half of the afternoon (including two breaks to perform my dog walking duties) but finally I’m ready to set up the camera and tripod and film myself.

Filming myself is the next major challenge.  My voice is very weak and is strangling my sentences, so I change my neurostimulator to the new (group “B”) settings.  My voice is much improved, but I find my eyes are constantly clamping themselves shut – only momentarily, but it doesn’t look great on video!  I change the settings back to group “A”, and make an extra effort to project my voice and enunciate clearly, but I still have many, many re-takes – very frustrating!

Then it’s on with the edit.  I load the footage onto my MacBook and get cracking, but tremor is really playing me up today (my next challenge) and I keep clicking the mouse where I don’t want to be clicking the mouse, and making stupid mistakes with my clumsiness.

My wife arrives home from work and I’m still nowhere near finished.   We have our dinner, and then I continue editing.  I finally finish the job and get it uploaded to my YouTube channel in time to publish it just a few minutes before midnight.  I’ll post links to it on social media tomorrow.  It’s been a long day…

The sunshine is back in Southrepps today – it’s amazing how the weather can affect your mood.  I’m feeling much more positive this morning.

It is my daughter’s 22nd birthday today, so I send her birthday greetings by text and social media (I already sent her a birthday card).

My wife is having another day of delivering leaflets to promote her soft furnishings business, and I have a number of computer-based tasks that I need to do.  I need to assist our friend Karl Sterling with booking some accommodation local to Southrepps for when he comes to visit us next month, and I also need to start work on my contribution to Karl’s book about exercise and Parkinson’s Disease.  My contribution will be mainly about Parkinson’s Disease!  I also want to make start on the script for my weekly vlog – this week I’m going to talk about a few innovative products that make life easier for people with Parkinson’s, and which have caught my eye over the post few months.  I have applied for (and been granted) permission to use some images of the products in my video, but it would be good to get some video of them in action, so I email the companies concerned to ask them if they have some promotional video that I could use.

I take a 1 gram dose of high potency CBD oil that I have been sent – I tried taking a 3 gram dose a few weeks ago, and it made me incapable of action.  The 1 gram dose doesn’t seem to do much at all, so I’ll probably try increasing it to 1.5 grams tomorrow.

I try switching my neurostimulator to group “B”settings for a little while (to improve the strength of my voice, which is weak and disappearing).  My voice does improve, but dyskinesia and tremor also increase, so I revert to group “A”settings after half an hour or so.

The beautiful weather that we had over the Bank Holiday weekend is but a distant memory.  It’s looking grey and miserable outside this morning, and by the time my wife is ready to go to work it has started to rain.

There’s a break in the weather around 10am, and I scuttle out with the dog before the rain starts again.  Sure enough, soon afterwards the rain is coming down again – not that hard, but steady.

I spend my second day in a row as a travel advisor.  Karl Sterling (a fitness trainer who specialises in Parkinson’s Disease, and who is a personal friend of ours) is coming to the UK next month to run a Parkinson’s Disease workshop in London, and plans to travel to Southrepps to visit us.  I investigate the availability of Bed & Breakfast accommodation in the village, and then check out the train journey and train fares and times from Heathrow Airport to Gunton station in Norfolk.  I send Karl a detailed message – it’s a little daunting to travel around a country that you are unfamiliar with, on a train network with which you are also unfamiliar!

The rain is still falling (steadily), and the weather forecast says that it isn’t going to stop any time soon, so I put on a coat and wellies and take the dog for a soggy afternoon stroll, which is a little briefer than usual.

I feel that I have been excessively lazy (again – second day in a row) so I give the kitchen a quick tidy and wipe down, and then vacuum downstairs before my wife gets home.

I’m having a lazy day of it today, recovering from cleaning my wife’s car.  I’m feeling pretty exhausted after quite a busy long weekend. My symptoms are fairly well contained, considering, and the only notable one is my voice which is weak.

I take the dog for her morning walk, and then research local Bed & Breakfast accommodation for some friends of mine who have sent me a message on Facebook, wanting to come and visit us next Sunday.  I find plenty of information for them, and send them a detailed message.

I spend the entire afternoon online – I have been meaning to locate some official documents relating to our cottage ever since I purchased it in 2011, so I create an account on the government’s Land Registry website, locate the relevant documents and buy them!  I also spend rather a long time on the Moonpig website, choosing and personalising a birthday card to send to my daughter, who is turning 22 this week.

I’m embarrassed to say that that represents practically my entire day, especially when I consider that my wife has spent the day delivering leaflets to promote her soft furnishings business, and has walked over 17 miles!

We have a ready meal for dinner, and then watch a couple of rather gruesome episodes of Dexter on Netflix.

Today is a bank holiday in the UK, which usually means that it rains.  It’s a bit of a surprise, then, to wake to a gorgeous sunny day.  We are going to go out on our boat today, and have invited my wife’s youngest son, his fiancee and our youngest granddaughter to join us.

My wife gets all of the necessary gear together for a trip on the boat (rechargeable vacuum cleaner, electric coolbox, beer, etc.) while I try to finish cleaning her car – just the vacuuming left to do!

We call into Lidl in North Walsham (for picnic type provisions) on the way to Wayford Bridge, and meet our guests in the boatyard.  A leisurely trip down the River Ant ensues, and we decide to stop at Barton Turf – we were going to cruise across Barton Broad, but there has been a sailing regatta and the water looks extremely crowded with sailing boats.

Barton Turf is nice and quiet, and we get a prime spot where we have plenty of room to get ourselves and the dog off the boat, spread a blanket on the ground, and loaf around for a couple of hours.

When we have returned to Wayford Bridge and moored up at our boat yard again, my wife and I pay a visit to my mum in Stalham.  She is having a relatively okay day (she has advanced Parkinson’s), but her voice is so quiet that I have extreme difficulty in conversing with her (because my hearing isn’t as good as it should be, either) – very frustrating for both of us!  I’m getting tired by this time, as well, and my voice is getting weaker and slightly slurred.

We return to Southrepps, watch the last episode of Ozark and get ourselves to bed.

I plan to continue cleaning my wife’s car today, but first we need to make a trip to the tip with a loaf of junk and garbage from our back garden.  So, I help my wife to load her car with an old bicycle, garden refuse, a rusty old fireguard, and numerous sheets of rotting plywood from the back garden to go with boxes of rubbish that she cleared out of her workshop earlier in the week.  I change my device settings to group “B” before we go out to the tip – my voice is getting very weak, and my walking ain’t great.  We drive to the municipal tip the other side of North Walsham, and then return home to collect another car load.

By the time we are back in Southrepps, I’m feeling knackered, but I really do want to finish cleaning my wife’s car, so I get the cleaning stuff together and make a start while my wife disappears off to the allotment for a while.  I am feeling “edgy” again, and my eyelids feel heavy, so I change my neurostimulator settings back to group “A”.   I manage to clean all of the car windows (inside and out), clean the majority of the interior plastics and make her tyres nice and black again.  I have probably overdone things (again), but now all that remains to be done is a thorough vacuuming, which I’ll try to do tomorrow morning before we go out for the day.

My wife is determined to make some (more) progress on the bathroom tiling this weekend and, sure enough, I hear the rattle of the tiling tools when I return from my morning dog walk.

My voice is weak and disappearing this morning, so I change my device settings over to group “B” (the new settings) for a little while.  My voice returns, but my eyes are clamping shut again (blepharospasm, or eye dystonia) so I revert to group “A” settings again.

I’m feeling guilty for not having finished the bathroom tiling months ago, so I vacuum downstairs, and then decide to wash my wife’s car.  I intend to clean her car inside and out, but by the time I have washed and waxed the outside and given the alloy wheels a thorough clean, I have completely exhausted myself.  I’ll finish the job tomorrow, providing the weather holds out.

I drag myself into the house for a sit down, and then summon up (from where, I don’t know) the energy to take the dog for her afternoon walk.

When we get back home, I knock up some carrot and coriander soup for our dinner, using the odd shaped carrots from our allotment – they may be odd shaped, but they taste just like a carrot should!

My legs are returning to normal now, and I’m no longer wincing (or groaning) every time I have to get up, or sit down, or walk.

I have now all but abandoned my new DBS settings.  I think the only benefit that they offered me was a stronger voice – I find myself switching to the new settings for 5 or 10 minutes when my voice is getting weak and husky, and then returning to my old settings.  My voice remains stronger for an hour or two when I do this.

I try switching to my new settings (group “B”) when I film my weekly vlog today.  It helps with my voice, but I can see the effect that it has on my eyes and my general demeanour when I come to do the editing.  My tremor control is also quite markedly impacted.  I had reduced the voltage on both sides by 0.1v (now 2.1v on the left and 2.35v on the right) so the dyskinesia and dystonia that had been apparent previously, were very much reduced, and were not obvious on the video.

As soon as I completed the filming, I switched back to my old settings (group “A”) – the electrical “rush” that I feel lets me know that I’m back on familiar ground, and slowly the desire to clamp my eyes shut subsides.

I’m feeling a little bit more “with it” today.   I’m still very tired, but not as bad as I was yesterday.

I chase up a couple of companies that I emailed last week, asking for permission to use images of their products for inclusion in my weekly vlog.  Most companies came straight back to me and were very helpful, but there are a couple that I have now contacted in several different ways without success.  I guess if I can’t get in touch with them then I’ll have to choose some different products instead, which would be a shame.

My legs are much better than they were yesterday – still stiff and aching, but nowhere near as painful.  I manage both of today’s dog walks without wincing.  My voice is a bit weak, so I tried changing my neurostimulator to group “B” settings (my most recent ones) to see if I can improve it.  Immediately my eyes are affected, and my eyelids feel as though there are made of lead.  Tremor control is also worse on these settings.  I battle this for 5 or 10 minutes, and then give up and change back to group “A” settings.

I receive another message on Twitter from the Channel 4 film crew, requesting further changes to the video that I sent to them yesterday, so I make the necessary changes and send them the revised video over the internet.

I slept much more comfortably last night, so why do I feel so completely knackered?  I sit on the sofa to drink my morning cup of tea, and I could so easily just shut my eyes and go to sleep.  It’s my legs that are giving me the most grief at the moment, though.  My calf muscles were tight and aching yesterday, but today I am stiff and aching from hip to toe – moving around is most uncomfortable, but climbing the steep staircase in our little cottage is a real struggle.  I change the settings on my neurostimulator to group “B” for little while to see if it will help my voice, which is rapidly becoming weaker again.  It does, but I find the tendency for my eyes to clamp themselves shut most disconcerting, so I switch back to group “A” settings again.

The Channel 4 film crew contact me via Twitter, asking me for a copy of my video “Revised Parkinson’s Tremor Control With Medicinal Cannabis” with the subtitles and links to my YouTube channel removed, so I crop out the subtitles and links and email them the video – they want to use it in the health programme for which they interviewed me a couple of weeks ago.

It’s my wife’s youngest son’s birthday today, so we are going to Hevingham this evening to join the rest of his close family for a takeaway curry (and a beer).   The curry is excellent (if a little too spicy for some of the previously uninitiated), and the entertainment (our eldest granddaughter) is beyond compare.

I had a very disturbed night last night, at least it felt that way!  My FitBit doesn’t agree, and says that I slept solidly. I do know that I was thrashing around and in quite a lot of discomfort with my neck, so that’ll be down to the new settings on my neurostimulator…  In fact I’m feeling distinctly “edgy”, my dyskinesia is through the roof (particularly in my neck) and my eyes seem to have a disturbing tendency to slam shut.  These settings are the original settings that I had straight after my operation -they caused impulsive behaviour then, but they also gave me the most benefit of any setting that I have had.  The theory was that the impulsive behaviour may have been due to the trauma caused by the surgery, so we decided to try these settings again to see what the effects are now.  It’s not looking good…

I decide to revert to my previous settings (group ‘A’ on my remote control) for the time being.  I’ll try the group ‘B’ settings again a little later on, but definitely not at bedtime!

My dyskinesia is much reduced, which is good.  My voice remains strong, which is also good.  Perhaps all I really needed was a change from the previous settings.  I’ll monitor my symptoms and see how things go – I don’t really want to have to go all the way back to London to be reprogrammed again.

We are up reasonably early (7.15) to grab some breakfast and a cuppa before my wife and I go back into London for my hospital appointment.  We help my daughter pack her belongings into her little VW Golf, and then drive to Stevenage railway station to catch a train to King’s Cross.

We arrive at the hospital half an hour early – this makes a change, because we are usually rushing to get there on time.  So much for being early…  We are kept waiting for over an hour and a half to see the DBS nurse who is going to perform my adjustments.  When she does make an appearance, she makes an excellent job of it – listening to what I am telling her about my issues with the current settings, and being very thorough in her questioning of me.  She spends a little while making adjustments – at one point she turns my DBS off completely, and it’s a stark reminder of how bad things would be if I hadn’t had my surgery.  My voice is stronger and deeper almost immediately – I’m so grateful for that!  My walking is also improved (a little) although I am still aware of a certain “wooden” quality.  Mentally, I feel my spirits are lifted slightly, and my wife says that I have regained some facial expression.  Tremor on the right side is well controlled, but there is still a tendency for it to break through a little on my left side – it’s a bit of a compromise, but then most things in life are!  I’ll let the settings bed in for a day or two, and see how things are then.

We are off to Stevenage today to visit my daughter.  She its spending her final night in her rented house there before travelling back to York to do the final year of her biochemistry degree.  My son and his girlfriend are also going to be there, and were are all going to travel into London on the train and spend the evening in the Blues Bar.

We have a good clear run to Stevenage, dropping the dog off at my wife’s youngest son’s house in Hevingham on the way.  A quick train journey sees us in the Blues Bar before 5pm for their weekly blues jam, where all manner of highly talented musicians turn up and play some amazing improvised and unrehearsed blues.  Today is a really good day (it’s usually very enjoyable, but a lot depends on who turns up to play – top quality musicians here today!).

We drink plenty of Adnams Southwold Bitter, whereupon my speech becomes very slurred and people are giving me funny looks (although I’m definitely not drunk). I can’t wait until my DBS tune-up tomorrow – I’m really hoping they can do something about my voice!

We catch a late train back to Stevenage, grab a taxi from the station, and we are all in bed shortly after midnight

It’s a sunny day in Southrepps and my wife and I are determined to spend some time working on our allotment today.   My wife wants to cut the grass and do some weeding, and I want to re-felt the shed roof – it got badly damaged by storm Doris a while back, and I have been meaning to effect repairs ever since.  So, we sort out an old roll of mineral felt that has been gathering dust, some roofing nails, screwdrivers, hammer, Stanley knife and step ladder, and head off to the allotment.

My wife makes everywhere look neater and tidier while I effect a passable repair to the shed roof – I’m not going to go into detail, but I’m just glad that nobody was watching me do it!  My feet are dragging as we make our way back home, and I know I’ve overdone things (again).

A hot bath revitalises me enough to go grocery shopping at Lidl in North Walsham with my wife, and we have a quick dash around the aisles to stock up for the next few days.

Back home, I slouch on the sofa (recovering) while my wife (wonderful girl that she is) prepares our evening meal.  Good food is followed by a beer or two and a little bit of cannabis to calm the left-sided tremor that is breaking through.

My wife is looking after our eldest granddaughter today, and she is bringing her to our house in Southrepps for a while.  My wife’s mother is also coming over, so making my weekly vlog is going to be trickier than usual.

I make a start on the script while my wife goes over to Hevingham to collect our granddaughter.  I take an enforced break when they arrive back at our cottage, which is really no hardship – she is almost 2 years old now, and as cute as a button.  She is coming out with more and more new words every day, and interacting with us and the dog – most entertaining!

I finish off my script while my wife and her mother take our granddaughter to the local playground for a while.  At lunchtime they return to Hevingham for the afternoon, leaving me in peace to film and edit my vlog, which I accomplish (with a few re-takes, due to my voice, which is disappearing and strangling my words).  I upload the video to my YouTube channel, publish it, post links to it on social media, and…. relax!

Another day of inaction, I’m afraid.  I feel tethered to the sofa at the moment, just sitting.  If it wasn’t for researching for my weekly vlog, then I really would be sat here doing nothing.  I am working on a vlog about innovative products for people with Parkinson’s, and I have selected a few products to talk about – I really need to use some product pictures to bring things to life, so I email the companies concerned to request permission to use their images.  I get two replies within the hour (granting me permission) but its now after 6pm and I’m still waiting for responses from the other companies that I contacted.   Since I can’t guarantee a response before tomorrow, I decide that this vlog is going to be for next week, and choose another subject for this week’s.

I stumble around the village hall field with the dog, and then resume (and finish) the preparation of my misshapen carrots that I failed to complete yesterday.   Finally, I chase up ParcelForce about a consignment that I booked online last Thursday – their website crashed while I was booking the service online, so I had to start all over again and they charged me twice!  They had promised to resolve the issue and call me back, but it’s now a week later, they haven’t called and they’ve still got my money (and I’m not very happy).   I receive a further assurance that it will be sorted out and that I will receive a phone call tomorrow.  We shall see!

I had another good sleep last night, and I’m still feeling washed out this morning, although my arms aren’t aching so badly as they have been and my tremor is still fairly well contained (apart from in my left leg).  I intended doing a little work down on the allotment today, but I just don’t feel like I have enough energy.

I take the dog for her morning walk, and then feel that I have to sit down for a while to recover – pathetic, really…

I spend the morning finding out about how to sell stuff on the Amazon website, because my wife wants to start selling curtain poles and such-like on the internet through her soft furnishings business.

This afternoon is spent trying to prepare a large bowl of very misshapen carrots (that I harvested from our allotment a couple of days ago).  I say “trying”, because I can only manage to stand at the sink for 10 minutes at a time, and then have to sit down and have a rest for 20 minutes.  By the time my wife turns home from work, I have only done about two thirds of them – I’ll finish them off tomorrow!

Dinner, beer (Bishop’s Finger) and another early night.

I slept soundly last night, but I’m still feeling tired and my arms are aching so I won’t be doing anything physical today – I had in mind mowing the grass at the allotment or washing my car, but those tasks can wait for another day.

The most physical thing that I do today is to move the new Calor gas bottles (that were delivered a couple of weeks ago) into the storage area in the back garden, and that’s quite enough to be going on with!

I script a few questions for my interview with Norman Lamb next month, and respond to an email from Martha Orbach, the London based artist who watched my Deep Brain Stimulation operation last April and who is currently working on a project about Parkinson’s Disease and DBS – she wants to meet up to discuss her project the next time I visit London.

I spend the afternoon editing my neighbour’s safari holiday video – there surely can’t be much more of this?  Tremor is in my left leg again, but it’s not too severe and it’s not impeding my progress.  The only symptom that is bothering me is my voice, which is very weak and husky today, so I keep my mouth shut and get on with the editing.

While my wife goes out for a run this evening, I prepare my ratatouille type dish using one of our marrow-sized courgettes and an onion from our allotment, along with some tomatoes and half a bulb of garlic.  My knife skills are much improved now that my tremor is under some sort of control, and I manage to chop all of the ingredients without cutting myself, but I struggle with muscular pain in my back from standing after about 10 minutes.

After dinner I crack open a bottle of Bishop’s Finger and self-medicate with a little cannabis.

I’m taking it easy (again) today.  I had a mildly disturbed night’s sleep last night, and I’m aching a little following my exertions at the allotment yesterday.

I receive an email from the office of Norman Lamb this morning, suggesting a couple of dates for myself and the production company who are making the documentary “The God Plant” to interview him regarding his views on the legalisation of cannabis, so I liaise with the production company and we agree to film him on the 8th September. Since the production company have expressed a wish for me to interview Norman, I’d better get my head together and script some questions to ask him, so I spend some time on the Liberal Democrats website familiarising myself with their 2017 General Election manifesto.

My tremor is much improved today, to my surprise.  My symptoms are generally worse when I’m fatigued, so it’s a mystery to me…  My voice is stronger as well.  My muscular weakness and stiffness is more of an issue, but then that is not unexpected.  Dystonia is unchanged. Dyskinesia is worse.  Overall, I’m not complaining.

We are having a lazy day today.  I have booked a table for Sunday lunch at The Vernon Arms – we won a three-course Sunday lunch for two in the local Open Studios draw this year.   It’s actually a little embarrassing, because we won the prize in last year’s draw as well. Having said that, it’s not embarrassing enough to prevent us from accepting it!

Before we go over to the pub, my wife and I go to our allotment and spend an hour weeding, returning home with freshly harvested carrots (some very misshapen ones!), courgettes (before they have time to become marrows), beetroot and spinach.

We enjoy a leisurely lunch in the pub, along with several pints of Abbott Ale, and remain there long after we have finished our meals, listening to some mellow blues from Stone Pony, a local duo who are playing in the bar this afternoon.

We return home somewhat the worse for wear, and have an early night.

I have a bit of a disturbed night last night – not sure why, but I was awake around 4am, then 5am, 6am and 7am.  I decide, since it’s Saturday, to remain in bed, and manage to snooze until almost 10am, which kind of makes up for the earlier awakenings.

Today we are going to my wife’s youngest son’s (and his fiancee’s) house to try to help them out a bit.  They recently had an addition to the family (our 2nd granddaughter) and they are both feeling the strain.  So, while they are out doing a little shopping in Norwich, my wife is grouting the wall tiles in their bathroom while I am fitting a blackout roller blind in the nursery.  My tremor is bugging me (still – I’m looking forward to my programming session at the NHNN on the 21st), and muscular weakness and stiffness is pretty uncomfortable in my upper arms but I do manage to fit the blind unassisted.

Mission accomplished, we return home via Lidl in North Walsham for essential supplies  (which include beer and ice cream, in case you were wondering).

My wife disappears off for a run, while I slam a couple of ready meals in the oven (red Thai curry), and make a start on the essential supplies (beer).  I also self medicate with a little cannabis to try to ease my muscular tension, which it does.

I had a great night’s sleep, but still I’m feeling extremely tired after my busy day yesterday.  My muscles are aching, my tremor is breaking through (mainly on my left side), my voice is a bit on the weak side, and I don’t feel like doing very much today.

I have a vlog to do, though, so I decide upon a topic (current advances, exciting research and the search for a cure for Parkinson’s Disease) and set about researching it.   It becomes apparent (fairly quickly) that the subject is too big to cover in a 5 or 6 minute vlog, so I decide to select one area of research (stem cell treatment) and cover that this week.  3 hours later, I’ve done some research and come up with a script that I feel fairly happy with.  Filming myself is a bit of an effort because my voice is breaking up, but I eventually (after several re-takes) manage to shoot something that I’m reasonably happy with.  I load the footage onto my MacBook and get it edited before I take the dog for her afternoon walk.

By the time my wife gets home from work, I’ve uploaded it to my YouTube channel, published it and posted links to Facebook, Twitter and Instagram as well as to as number of Parkinson’s Disease forums that I am subscribed to.

Time for dinner, a beer, some cannabis and an early night!

I’m expecting a film crew in the house today, so I have several hours of cleaning and tidying to do before they arrive this afternoon.

First things first – a cup of tea, Nutriblast, dog walk and pay a couple of bills online before I forget.  Then I set about dusting and vacuuming the lounge, kitchen/diner, hallway, stairs, landing and bathroom.  I wash the tiled floors in the kitchen/diner and the bathroom and then give the basin, toilet and bath the once over.  I feel that the house is now in an acceptable state, which is more than can be said for me!  I’m hot and sweaty and knackered.  I have a bath, get changed into clean clothes and retire to the sofa to await the arrival of the film crew.

I receive a phone call to say they are running a couple of hours behind schedule, so take a leisurely stroll with the dog around the field by the village hall.

I’m feeling a little less knackered by the time they arrive at 5.30pm, which is just as well.  They fill the downstairs of our little cottage with camera, tripod, audio and lighting equipment, and then their presenter, Morland Sanders, interviews me about my use of cannabis to treat my Parkinson’s Disease symptoms.   My tremor is breaking through quite strongly on both sides – the stressful situation of being interviewed is definitely making itself known.  They do a number of takes from different angles (even the dog gets in on the act) and then its all over.   Equipment packed away and film crew gone by 7.30pm.

I think I should sleep well tonight!

It’s a grey, wet day in Southrepps today, and I’m planning on spending the day indoors.  I take the dog for her morning walk when the rain appears to have slacked off a little, but it’s still wet enough for me to make it a fairly brief outing.

I book a courier online to send a parcel on behalf of my wife’s soft furnishings business, and encounter a web server error when confirming the order.  This means I have to submit the order again, and I notice that they have taken payment from the business account twice!  Grrrr!  By the time I’ve managed to get through to the courier company’s customer service department (which involves navigating one of those infuriating automated call handling systems), explain the problem to the customer service representative, and receive assurances that the problem will be resolved, I’m both irritated and stressed – not a good start to the day!

I spend a little time researching holiday destinations online.  My mother gave me £1,000 for my birthday this year, to put towards a holiday for my wife and I.   I also told my wife (last April, when I was in hospital for my DBS operation) that I would take her away somewhere special if I survived the operation, so I really need to make good on that promise.  I look at various options, but I’m still no closer to deciding where to go – more work required, must try harder!

I receive a phone call from the television production company that is making the health program for Channel 4 (for which they are filming me) – they want to come and film me tomorrow rather than in a week’s time, would that be okay?  It’s fine with me, so tomorrow afternoon it is!  I think my wife will have a nervous breakdown when I tell her – she’ll spend the next 24 hours trying to turn our partially renovated little cottage into something out of “Homes & Gardens“, so I decide not to tell her immediately, and do a little tidying/de-cluttering before she returns home this evening.

I wake up with tremor in my left leg once more.  I’m fairly sure that it is due to fatigue (I’m feeling shattered in spite of a good night of sleep), but I reach for my device controller to increase stimulation on my left side.  Unfortunately I find that I’m already receiving the maximum voltage allowed, so that puts an end to that thought!

I take things very easy today, sitting on the sofa in our lounge with my iPad, replying to a few social media messages and sending replies to a couple of emails that have been lurking in my inbox since the end of last week.

The weather has definitely taken a turn for the worse, and the afternoon brings dark clouds, thunder and lightning and a torrential downpour.

I take the dog for her afternoon walk when the rain abates a little, and combine this with a visit to our allotment.  I harvest three courgettes that are trying to be marrows, and set off back home. Its at this point that I realise how absolutely knackered I truly am.  Its only about 200 metres from the allotment to our house, but I am staggering like a drunkard before I’m halfway there, and I’m on the verge of collapse by the time I’m through the front door.  I put the courgettes/marrows in the conservatory, dry the dog off and retire to the sofa (again).  I think I’m going to be aching tomorrow!

Bright sunshine at 7am gives way to cloud by 9am.  The weather forecast is for cloud and rain, so we have some breakfast and a cup of tea/coffee and head off back up the River Ant to our mooring at Wayford Bridge.  We moor the boat on the river bank and transfer all of our paraphernalia to my wife’s car.

Before we go home we pay a visit to my mother (who has advanced Parkinson’s) in Stalham.  She’s having a good day, and I can almost hear what she’s saying to me (from time to time).  It’s while we are attempting to hold a conversation that I realise that my voice is much stronger than it has been for a long time, and it’s not so much of an effort to get words out.  Perhaps it’s down to the fact that I changed my device settings yesterday?  I always associate an increase in stimulation with a decrease in tremor and dystonia, but with deterioration of my other symptoms, so I had been expecting my voice to get worse, if anything.  I make a mental note to discuss this with the DBS programmer when I go to the NHNN on the 21st.

We return to Southrepps via Lidl in North Walsham for urgently needed supplies (milk and beer).

We awaken to a beautiful sunny morning – a good day for cleaning the outside of the boat.

My brother arrives at Barton Turf in his boat and decides to help me and my wife clean our boat – a very welcome gesture!  I empty out the gas locker, which is in one hell of a state, throwing away much of the contents and cleaning the remainder.  My wife scrubs at the decks and cleans the windows, and my brother cleans the hull. A couple of hours later the boat is scarcely recognisable.  She’s still looking a bit on the tatty side, but I knew that she needed a lick of paint.  At least she’s now clean and tatty…

We take a rest and have a beer. My tremor is still strong in my left side, so I increase the voltage on the left side of my neurostimulator by 0.1 volts (now 2.8 volts on the left and 2.4 volts on the right).  My tremor is instantly under control and doesn’t bother me again for the rest of the day.

We decide to stay on the boat again tonight, and end up drinking cider with my brother and reminiscing about our misspent childhoods until far too late.

I’m awake at 3.45am. And 5am. And 6.30am.  I manage to get back to sleep each time, until eventually I get up at around 8.30am.

My wife makes the tea/coffee, feeds the dog and takes her for a walk around the boatyard, while I try to find out why the engine isn’t charging the batteries.  After much grubbing around an oily engine, we discover that the alternator isn’t up to the job of charging 3 batteries, as well as running the fridge – I turn the fridge off for the time being, and normal battery charging service is resumed.

We head off downstream at a very leisurely pace, crossing Barton Broad and ending up at Gay’s Staithe (no, it’s not a Norfolk cruising location – well, actually I suppose it is, just not that kind) where we moor up for a couple of hours while I attempt to repair one of the bedroom drawers and my wife gets on with the task of cleaning a year’s worth of neglect from the outside of the boat.  We then motor back across Barton Broad to Barton Turf where we meet up with my wife’s youngest son, his fiancee and our youngest grandchild.

My symptoms should be at their least bothersome while we are out on the boat – away from the stress of everyday life.  My tremor is really getting to be a problem on my left side, so if it’s no better tomorrow then I shall risk increased dyskinesia and turn the stimulation on my device up by a couple of notches.  Other than that, my voice is still weak, but a little stronger today than it has been of late, my balance is a little wonky and my walking is on the wooden side, muscular stiffness and weakness are not troubling me, and neither is fatigue.  Mood and motivation are reasonably okay.

When our visitors have departed, we cook a ready meal and settle down to listen to an audio book whilst I try replacing (successfully) an ancient fluorescent light fitting in the main cabin with a modern LED fitting.

We are spending a few days on the boat, starting today, so I publish my vlog first thing this morning, and post links to Facebook, Twitter and Instagram, as well as a number of Parkinson’s Disease forums.

We have a visit from my wife’s youngest son’s fiancee and our youngest granddaughter, which is very nice.

The weather isn’t quite as good as was forecast, but we decide to go to the boat in any case – it’ll be a change of scene if nothing else.

My tremor is really quite strong on my left side today, so I bite the bullet and email the DBS team at the NHNN for an appointment for a tune-up – so, I’m off to hospital on the 21st for a little adjustment.

We get to the boat before dusk (via Lidl in North Walsham, for a couple of ready meals and some bottles of beer) make up the bed (well, my wife does), crack open a couple of bottles of Bishop’s Finger and just chill out for the evening

I’m definitely going to research, write a script and then film and edit my weekly vlog today.  Yesterday was a failed attempt due to excessive consumption of a rather potent CBD oil. Today I will put up with the tremor and muscular pain, and concentrate on projecting my voice and trying to enunciate clearly.

My wife is working from home again today, trying to bring the accounts up to date for her soft furnishings business, which is a major distraction for me – I’m used to there being just me (and the dog) at home during the week.

I choose a cannabis related subject for my vlog, and spend several hours doing my research.  I have a script that I’m (reasonably) happy with by mid-afternoon, so I set about converting the lounge into a studio – setting up the camera and tripod, the stand for my iPad (with the teleprompter app on it), moving some stuff out of camera shot, getting the lighting right.  I take the dog for her afternoon walk before I start filming – she’ll only get restless otherwise – and then send my wife out for a run so that the dog and I can have the house to ourselves.

By the time my wife returns (red in the face and very sweaty) I have finished the filming (without too many retakes) and am loading the raw footage onto my MacBook for editing.

I edit the video pretty quickly, given that tremor is not helping, and by the time dinner is on the table, I’m uploading it to my YouTube channel.

Time for a beer (perhaps two), and the final episode of Episodes on Netflix.

My wife is babysitting our eldest granddaughter in Hevingham today, and I’m staying in Southrepps for the day to progress with this week’s vlog.  We want to spend a few days on our boat, and (currently) the weather forecast for Friday (my usual day for writing/filming/editing my vlog) isn’t looking too bad.

I had a Twitter message from another television production company this morning, wanting to know if I would be interested in taking part in a program that they are making for Channel 4 about health, to talk about my medicinal use of cannabis.  So, it looks like the downstairs of our little cottage is going to be invaded by a camera crew for the second time this year.

I received a package in the post this morning.  It was a box containing five 5ml syringes filled with CBD oil.  I was emailed few days ago by a company called British Cancer Vaccines – they are a UK charity performing a trial of CBD oil (0.3% THC,12% CBD, full plant extract) on a group of cancer patients.  The chap that emailed me wanted to know if it would be any good for Parkinson’s (because his mother has PD) and offered to send me some free samples to evaluate.  While I was examining one of the syringes, I managed to dispense some of the oil by mistake.  Rather than waste it, I took a dose of the oil.  The dosage that they are giving the cancer patients is 2 grams per day, but I somehow managed to take 3 grams.  Let’s just say that I was in an extremely relaxed state for the rest of the day, and I didn’t make any progress with my vlog. Apparently they wanted me to start off with taking 0.5 gram and increase dosage to 1 gram if required – I shall certainly be a little more conservative with my measures next time!

Today my wife and I are going to Stalham so that she can measure up for replacement seat covers on a boat, so that she can provide a quotation.  While we are over that way we are going to take the new marine battery (that I purchased last week) to our boat at Wayford Bridge, and also pop in to see my mum – three birds, one stone!

My wife busies herself with a tape measure while I sit and chat to the boat owner.  20 minutes later we are finished – tape measure and fabric samples back in the car, and we are on our way to Wayford Bridge.  I carry the new battery onto our boat and connect it up, then I leave my wife cleaning and tidying (she has a nasty Summer cold that she doesn’t want to pass on) while I drive the couple of miles back to Stalham to visit my mum and younger brother.  Mum has advanced Parkinson’s and recently had a short spell in hospital for reasons not yet determined (so officially logged as a “Parkinson’s related incident”).  She is looking quite well today, but we have the usual communication problems – her voice is scarcely more than a whisper, and I’m a little hard of hearing, so there are cries of “pardon?” and “say that again” from me, and looks of exasperation from my mother.  I feel that my voice is weak and husky, but my brother thinks I sound fine, so perhaps it is just my perception that my voice is weak…  I must say that it sounds quite indistinct to me at times, and I do find it an effort to speak at a volume that people can hear.  Hopefully that will be changed when I have my next DBS tune-up at the NHNN.  Other than my voice, my symptoms seem well controlled today – all of them still present and correct, but nothing that is unbearable!