Author: Ian

My Parkinson’s is bothering me at the moment.  Perhaps my symptoms are playing up because I’m full of cold at the moment, or maybe it’s simply progression…  My muscles are extremely stuff and painful at the moment, and I feel as weak as a kitten.  My voice is terrible (weak and slurred) – so much so that I change the settings on my neurostimulator from group “A” to group “B” to see if there is any difference (there is a minor improvement, but I notice that I start biting the inside of my mouth again, and I really struggle when filming my weekly vlog this afternoon – 90 takes, rather than the more usual 35 or so).  I change my settings back to group “A” before I do too much damage to the inside of my mouth.

My filming takes longer than usual, and so does the editing, so it’s late this evening before I finish my video, upload it to my YouTube channel and publish it.  I post links to my vlog on Facebook and several online Parkinson’s forums, and then call it a day.

I still feel down and disinclined to do anything (not helped by a very sore throat), but I need to deal with my car insurance which will automatically renew tomorrow, unless I phone the company and specifically tell them that I don’t want to renew (one of my pet hates, especially since their renewal premium for the exact same policy online is twenty quid cheaper).  I phone my insurance company and, after fifteen minutes of being “on hold” am told (triumphantly) that they are going to match their own cheaper online premium – big deal!  I renew my policy and cross it off my “to do” list.

I start researching for my weekly vlog to ease the pressure on me tomorrow, but I can’t say that I make all that much progress – I keep finding other things to do instead (getting logs in, walking the dog, lighting the fire, vacuuming downstairs).

I’m feeling very tired today, and take things very easy, which may not seem to be much different to the norm (but it is!).  I make myself a “to do” list with about half a dozen easily achievable tasks – by the end of the day, I’ve managed to cross off 4 of them, so I’m pleased with that.  I received an email from Norman Lamb (my Member of Parliament) this morning, with copy of the local healthcare trust’s response to his recent letter about exenatide – basically reiterating their refusal to fund the drug for Parkinson’s Disease because of “insufficient evidence of benefit”, and laying the ultimate responsibility for doing so at the door of the CCG (who labelled the drug as “experimental”, which I dispute).  I had expected this response, but it’s still a blow to me, and I’m feeling very down by the time my wife arrives home from work – especially when I’m struggling to speak to her coherently (and failing).

I intended to call Norman’s office today to speak to him about the CCG’s response, but I decide that I need to respond (in writing, and in detail) to this, and the healthcare trust’s reply, and I’m simply not feeling up to it right now.

New Year’s Day starts slowly with a bit of a lie-in, but we’re having a houseful this afternoon/evening for a roast dinner (my wife’s sons, their partners, our grandchildren and my wife’s ex-husband) so things soon become a little more hectic.  We have a truly manic afternoon – entertaining our two granddaughters, seating 9 people for dinner in our tiny cottage, and dealing with tired toddlers following dinner.  I’m relieved when all of our guests have departed, and life returns to some semblance of normality – it’s lovely to see everyone, but incredibly stressful, and I’m happy when it’s all over.

My wife clears away all of the debris (for which I’m incredibly grateful), and then we have a couple of beers and watch a couple of films on Netflix.

My wife and I are spending New Year’s Eve with my wife’s youngest son, his partner and our youngest granddaughter this evening (along with other invited guests), so we start the day with a trip to Lidl in North Walsham to stock up on beer and buy the ingredients for a dessert that my wife wants to make to take with us this evening (she hates to go anywhere empty-handed).

While my wife is preparing the dessert (sticky toffee pudding), I vacuum downstairs, walk the dog and then sit on the sofa in the lounge and catch up on social media.

We have a great evening out, although I end the night feeling exhausted and it’s touch and go whether we make it to midnight (we do actually stay to see in the new year, but depart soon afterwards).

My daughter is departing for York this morning, so I cook us bacon and eggs for breakfast, and then she loads up her car and hits the road.  The main battery from our boat seems to be sufficiently charged, so my wife and I take it back to Wayford Bridge, refit it and run the engine for half an hour or so.  While we are at the boatyard, we launch my wife’s inflatable kayak (a recent birthday gift) and go paddling up the River Ant towards Dilham for the best part of an hour.  It’s great fun (if a little damp) and my wife loves her birthday present (which is the main thing).

We return to Southrepps in time to walk the dog and get some logs in before it gets too dark, and then I light the fire and run the vacuum cleaner around downstairs while my wife prepares an evening meal of chilli-con-carne (left over from yesterday’s entertaining!).

We have invited my wife’s parents and her youngest brother (and family) for drinks and food this evening, so while she is cooking, cleaning and tidying, my daughter and I take a drive over to Wayford Bridge to check on our boat (it hasn’t been used for 2 or 3 months, and I always worry about the battery going flat and then the automatic bilge pump won’t work).  The boat is still afloat, which is a major relief, but there’s insufficient charge in the main battery to start the engine, and both of the auxiliary batteries are as dead as a dodo.  We take all three batteries back to Southrepps to be recharged, so I’ll have to return to the boat tomorrow.

We have a very pleasant evening with our guests, eating and drinking far more than is strictly good for us, but hey, what the heck!

My daughter is driving up from Dorset today to stay with us for a couple of nights, so I need to get my weekly vlog finished soon as possible so that I’m not still working on it when she arrives.  She is scheduled to arrive mid-afternoon, so I need to get a move on.

I select a recently requested subject, but after an hour or so of research I realise that the subject matter is far too complicated for me to cover today.   Luckily, I received a letter from Norman Lamb this morning, containing a response from the Clinical Commissioning Group to the letter that he recently wrote (on my behalf) about the local healthcare trust’s refusal to prescribe exenatide to me – so I decide to make this the subject of my vlog instead.  I’m running behind schedule, so it’s a relief when I receive a message from my daughter letting me know that she’s also running late.   She arrives just as I’m publishing my video, so the day has worked out pretty well, all things considered.

My wife returns to work today, so I am left to my own devices.  I have an uneventful day, mostly spent setting up the Amazon Echo Dot that my wife bought me for Christmas, and getting it to work with my Sonos speakers.

I’m feeling fatigued after yesterday, and the backs of my legs are aching like hell, so it’s no real surprise that I’m not feeling up to any physical activity.   I do, however, walk the dog (twice), replenish the log basket (I lit the fire this morning because I was feeling chilly), strip the spare bed and wash the bedding in preparation for a visit from my daughter (who is coming to stay for a couple of days, arriving tomorrow).

I intended to start researching and scripting my weekly vlog this afternoon, but I just don’t get around to it, so tomorrow is going to be hectic…

Boxing Day begins with a good lie-in, and I don’t get out of bed until after 10.30am.  My wife’s youngest son and his wife furnish us with cups of tea/coffee and then prepare a fabulous cooked breakfast.   Present opening resumes (for our youngest granddaughter, who has more new toys than you can shake a stick at), and then my wife’s sons suggest trying out my wife’s new kayak (which she received for her birthday last week).  I’m not feeling like doing very much (as usual – my mood isn’t great at the moment) but I know my wife is itching to try out her present, so I go with the flow.  My wife and I drive back to Southrepps to collect her kayak, and then meet the rest of the family at the River Bure at Mayton bridge.  Following a little bit of messing about on the water (my wife and her two sons – I remain on dry land because I’m struggling with balance issues at the moment), my wife and her eldest son decide to paddle the kayak downriver to Horstead Watermill, so the rest of us travel there by car to meet them.  They make it there just before it starts to get dark, and my wife is really pleased with her birthday present, so that’s the main thing!

We pack the kayak away into its carrying bag, and then drive to my wife’s parent’s house in Worstead for more festive food and exchanging of gifts.

It’s 10.30pm by the time we get home – just enough time to quaff a beer before heading off to bed.

Christmas Day starts at around 5am with the sound of our youngest granddaughter running around upstairs – I bury my head under the covers and manage to stay in bed until about 6.45am, when everyone else is getting up and preparing for the day ahead.

The entire family congregates at my wife’s eldest son’s house where breakfast is served and the present giving commences.  Chaos ensues for several hours, and I escape for an hour or so by returning to Southrepps to collect some of our saucepans (we forgot them yesterday, and they are required for the preparation of the Christmas meal).  We eat our Christmas dinner quite late in the day (around 5pm), and then slump in front of the telly, stuffing ourselves with chocolates and other essential food groups.

We are invited over for a Christmas Eve evening get-together by my wife’s eldest son and his partner, and we are then staying with her youngest son and his partner until Boxing Day, so we spend the day sorting the house out so that it is clean and tidy when we return.

We load my wife’s car with presents, food, bedding and the dog, and head over to Hevingham as it’s getting dark.  We spend the evening eating, drinking and being entertained by our granddaughters, before getting a relatively early night in preparation for the craziness of tomorrow.

We are being treated to Sunday lunch in the Vernon Arms by my wife’s parents today, so we cram our cleaning tasks into the morning – my wife keeps herself busy with laundry and preparing a dessert to take with us for Christmas Eve dinner at her eldest son’s house, while I sort out the log situation and get the fire lit and the floor vacuumed before we stroll across the road for our meal.

We have a very relaxed couple of hours in the pub, enjoy a cracking roast dinner and several pints of Abbot Ale, and even stay to listen to some live music before heading home to chuck a couple more logs on the fire and take the dog out to stretch her legs.

We decide to watch a festive film and then get an early night, and fail on both counts (my wife fell asleep halfway through the film, and it was getting on for midnight by the time we got to bed).

My wife is busy making preparations for Christmas (final, final grocery shopping and some present wrapping) while I loaf around (as usual) and post links to my latest vlog on Instagram and Twitter.  While she is out of the house (taking presents over to her youngest son’s house, where we are spending Christmas day) I split a load of kindling (to keep us going over the festive period) and a basketful of logs (to keep us going tonight), clean the windows in the woodburner, light the fire and vacuum downstairs.

I’m very aware of emerging tremor (both sides of my body) – I hope it’s just down to stress, and not due to disease progression.  There has been no response from the local health trust or Clinical Commissioning Group to Norman Lamb’s letters about prescribing exenatide for me, and the 14 day window (in which he requested a response) expired this week – I’ll chase this up first thing in the new year!

I’m feeling jumpy today, kind of like I have restless legs syndrome, but throughout my entire body.  It’s most unpleasant and uncomfortable, and has me reaching for the cannabis very early in the day (I generally don’t take any cannabis before the evening).   The cannabis doesn’t actually make the jumpy feeling go away, but it does help me to tolerate it.

I’m working on my weekly vlog today (as is usual for a Friday) so the morning is spent researching and writing a script, and the afternoon is spent filming myself and editing the resulting raw footage into a short video.  My voice seems better than last week, although I do have to make a conscious effort to enunciate clearly and not slur my words.  I have a little more tremor breaking through my DBS than is usual, which makes it difficult for me to use the trackpad, and this slows me down considerably when editing.  I briefly consider increasing the right hand voltage on my neurostimulator, but resist the temptation because I’m fearful of provoking my eating issues (experienced some time ago now, but which I believe to be linked to over-stimulation – at least, I have stopped biting the inside of my mouth with such violence since I reduced the voltage on my neurostimulator).

I’m not in my usual rush to finish my vlog and get it uploaded and published – my wife is going shopping with her youngest son’s wife to buy the food for our Christmas dinner, so she will be very late home this evening.  I do, however, manage to publish my video at about the usual time, regardless of the lack of pressure, which leaves me plenty of time to have a quick tidy-up, light the fire and run the vacuum cleaner around downstairs.

My son is travelling down to Dorset for Christmas today.  I cook him some breakfast (bacon and eggs) while he makes a pot of tea, and then we make sure he’s packed all of his belongings back into his case and backpack, and load them into my car.  I drive him to the railway station in North Walsham where we say our goodbyes and I wave him off on the train into Norwich.  An hour later I receive a message from him saying that he has left his baseball cap on the back of a chair in the dining room – so much for ensuring he had remembered everything!

My wife and I are joining her family in Hevingham this evening so that her sons can give her her birthday presents – we also share a Chinese takeaway, which is nice.  It’s after 10pm by the time we get home, and my wife has yet to open her present from me, so we crack open a couple of bottles of Hobgoblin, she opens her gift (an inflatable kayak) and we proceed to have an extremely late night.

It’s a grey and uninspiring kind of day, and my son and I plan on staying indoors (as much as possible), playing some guitar and watching some telly.  We do have a brief excursion to Lidl in North Walsham to stock up on essentials (beer, some ready meals for dinner tonight,  some custard creams to go with our frequent mugs of tea and some flowers for my wife).

Two of my nephews pay us a visit this evening, and drag us (kicking and screaming) across the road to the Vernon Arms for several pints of Abbot Ale and a few games of pool, which fills our evening quite nicely until my wife returns home (very late) from work.

My son and I go out to do some present shopping today, after the dog has been walked and PopMaster listened to.  First stop is North Walsham railway station to collect the tickets for his journey to Dorset on Thursday (this time I remember to note down the codes required to collect the tickets from the ticket machine).   Mission accomplished, we drive to Tesco in Sprowston to enable my son to buy a birthday present and card for my wife (it’s her birthday on Thursday).  I intended to drive over to Longwater Retail Park to shop for a rucksack for my son’s Christmas present, but it turns out that what he is after is so specific that it will be easier to find it online (it needs to accommodate his laptop, iPad, camera and drone), so we decide to return home and shop for it from the comfort of the sofa.

It’s already starting to get dark by the time we get back to Southrepps, so I take the dog out for her afternoon walk, split a basketful of logs and light the fire.  My son persuades me to accompany him to the Vernon Arms for a pint of Abbot Ale (I’m easily persuaded), and then we have our dinner and await the return of my wife from work.

I wake up shaking like a leaf – my left leg is going nineteen to the dozen, and it seems very strange.  I was so frustrated with my voice last night (I was slurring like a drunkard) that I decided to switch my DBS off to see if my clarity of speech would improve (it did, to a degree), and my tremor was unbelievably under control, which was a complete surprise (until I remembered that I had had some cannabis).  I left my power off overnight to see if some of the residual slurring would be eradicated – it wasn’t, and during the night my tremor had returned with a vengeance (because the cannabis wore off).  I switch my neurostimulator back on, and immediately I feel the surge of electricity throughout my brain and body (a kind of pleasant/unpleasant sensation) and everything calms down somewhat.

My son and I have a chilled kind of day, venturing out a couple of times with the dog, and once to North Walsham train station to collect some rail tickets for my son’s trip to Dorset later this week (only to find, once I’d driven there, that I’d forgotten to note down the code required to enable me to collect the tickets – a wasted journey!).

I try turning my DBS off again this evening, but my tremor returns immediately.   I try taking some cannabis to see if it would calm it, but I don’t achieve the sense of calm that I got yesterday so I end up switching it back on.

My son is arriving back in the UK today – he recently returned from over a year of globetrotting, only to disappear off to Morocco for a week’s holiday with his sister.  I offered to collect him from Stansted airport to bring him back to Southrepps for a few days, so this afternoon I leave my wife cleaning and tidying our house, and drive to the airport.

The flight is delayed for half an hour, but that’s no big deal, and before you know it we’re on our way back to Norfolk, stopping off at McDonald’s for something to eat, and arriving back in Southrepps around 10pm (where we sit, chatting and drinking a couple of bottles of Hobgoblin, before heading off to bed).

My son (who has been on his travels for the last 14 months or so) is coming to stay for a few days (arriving tomorrow) so my wife and I venture out to Longwater Retail Park to do some last minute Christmas shopping, and then to Lidl in North Walsham to stock up on edible goodies so that we can prepare some meals for the coming week.

It’s amazing how a “quick trip out” consumes a whole day, and it is dark (and cold, and wet) by the time we get back to Southrepps.  I take the dog for a quick walk and then bring in some logs for the fire while my wife is organising the unpacking of groceries and the preparation of our evening meal.

I feel that I’ve had a more productive day today – largely because I have something to show for it (yet another vlog).  As well as researching, scripting, filming and editing, I find the time and energy to accomplish my usual daily dog walks (although the dog stole another dog’s ball and refused to give it back, turning a quick 10 minute walk into a 20 minute farce), bring in a basket of logs for the fire (I cheated by choosing logs that didn’t require splitting) and vacuuming downstairs.

While my video is uploading to my YouTube channel, I light the fire, and then quickly post links to my vlog on Facebook and the online Parkinson’s Disease forums that I’m subscribed to.   All done and dusted by the time my wife gets home from work!

I manage to do a little more today, but I’m still struggling.  It’s still pretty cold outside, so my dog walks are briefer than would normally be the case, and I dress up warmly.

I received my “blue badge” yesterday, but either they (Norfolk County Council) have cocked-up the relevant dates (which is likely), or they have sneakily found a way of effectively increasing their revenue by a third.  The letter accompanying the badge directs me to contact them by phone or email with any issues, so I call their “customer services” line, only to find that I can’t speak to anyone about the problems because the line is merely an outgoing message instructing you how to apply for a badge.  Grrrrrr!  I compose an email outlining the issues, and send it to them.

I’m feeling the cold again, so I split a load of logs, fill the log basket and light the fire early (again).  We are going to visit my wife’s younger brother and his partner (and their recently adopted ex-racing greyhound) in nearby Bacton this evening, so I have a quick shave (with only minimal bloodshed) and spruce myself up a bit.

It’s a chilly morning in Southrepps, so I’m even more reluctant than usual to venture outside – the dog is very insistent, however, so I wrap up warmly and take her for her morning stroll.  I’m still not getting stuff done, but I do (finally) get around to posting links to my last vlog on Twitter and Instagram – in itself this is a good indication of how I’m feeling, because I usually post those links on Friday evening or Saturday morning…

It’s either particularly cold (which I don’t really believe) or I am feeling the cold due to my lack of activity (this sounds more likely), so I fill the log basket and get the fire going soon after lunchtime.  The house does feel warm when I return from the afternoon dog walk, so that confirms that the reason I’m feeling chilly is because I’m just lounging around doing nothing.

I make some small progress in editing the video of the Bure Valley railway trip that we went on on Saturday (I transfer the raw footage from my video camera to my MacBook), so that is a little better than nothing (but not much).

I’m still feeling like a spare part at the moment – surplus to requirements.  I really need to give myself a kick up the backside to jolt me out of my current mood, but it’s so difficult to do so – far easier to sit here on the sofa and let it all wash over me.  My son is coming to stay with us for a few days next week, and I really don’t want him to see me this way – hopefully it will have passed over by then.

I try to analyse why I feel so useless, and I come to the conclusion that it is rooted in my lack of motivation, which is at least as frustrating for me as it must be for my long-suffering wife.

I am motivated (by the dog) to go dog walking this morning and this afternoon, and am motivated (by the cold) to split a basketful of logs, carry them into the lounge and light the fire (a couple of hours earlier than usual).

As predicted, I’m not feeling great today, after a couple of long days.  I hate feeling this way.  I feel that I have no purpose, but I don’t have the “get up and go” to do any of the 101 tasks that I could (and should) be getting on with.  I find it hard enough to do the unavoidable tasks of walking the dog, getting the logs in for this evening’s fire (it’s cold outside), and running the vacuum around downstairs, but I do manage to do them.  I also clean the woodburner out, because it is getting choked with ash.  I consider going for a sauna/swim this evening, but when my wife gets home she really doesn’t feel up to going – so we don’t.  We stay at home in front of the fire and watch a little something on Netflix.

My wife and I are driving to Chesterfield to visit her grandmother today, so we are up early (again) to get ourselves organised and get the journey underway before too much of the day elapses.  We take the dog with us, and Christmas presents and cards from various family members (as well from us).  We make reasonable progress considering that we stopped for half an hour en-route to eat (at McDonald’s) and give the dog a chance to stretch her legs, arriving at the care-home just after lunchtime.  We spend an all too brief couple of hours chatting to my wife’s granny, and then leave for the drive back home.  We arrive back in Southrepps at around 9.30pm, having stopped along the way for a bite to eat (at MacDonald’s, again) and to give the dog her dinner as well.  I’m aching from being cooped up in the car for so long, and feel exhausted from having had a busy weekend, so I expect to be recovering for the next day or two.

We had a late night last night, not getting home from babysitting duties until almost midnight, and by the time we had had baths and got into bed it was after 1am.   I didn’t feel much like getting up when my wife’s alarm went off at 8am, but we are all (my wife and I, her two sons and their partners, our two granddaughters and my wife’s ex-husband) going on the Bure Valley Railway Santa Special from Wroxham to Aylsham this morning (it’s for the kids – honest!).   We have to leave Southrepps by 9.15 to be at Wroxham station at 9.45, so I drag myself out of bed at 8.30am and manage to guzzle my two mugs of tea before having to leave the house.  The grandchildren have a fabulous time, and the adults enjoy a leisurely ride through some fantastic scenery.  The weather was kind to us, and the sun was shining throughout.

We return to Southrepps mid-afternoon and get on with the usual Saturday tasks – my wife attending to the laundry and changing the bed, while I split some kindling and logs, fill the log basket and vacuum downstairs.

My wife and I are babysitting our eldest granddaughter this evening, so I need to be a bit ahead of the game with my weekly vlog so that I can have it all finished and published before I drive over to Hevingham.  I choose to talk about my meeting (last Friday) with Norman Lamb (my Member of Parliament) about the difficulties that I am having obtaining exenatide and medicinal cannabis on prescription – it requires no researching, and I am able to write a script straight off the top of my head, which definitely helps speed things up.   My voice still sounds rubbish (to my ears) but I don’t have the huge number of takes and re-takes that I had last week and the week before, so it must have improved somewhat!  I manage to finish my video, upload it to my YouTube channel, publish it and post links to it on Facebook and the online Parkinson’s disease forums that I’m subscribed to before I have to leave Southrepps to join my wife in Hevingham (so that’s a result).

Another day the same as the one that preceded it.  The only notable difference being my levels of pain and discomfort – I woke feeling like I’d been sleeping on a bed of rocks, rather than our wonderfully comfortable mattress, and my back muscles are painfully rigid this morning.  I decide to get myself over to Woodland Holiday Park for a sauna (after doing all of the usual morning things – tea and Nutriblast drinking, dog walking and PopMaster listening/participation).  I’m the only client, which is always nice, and I spend a good 40 minutes in the sauna, followed by a 5 minute cool-down in the swimming pool.   I’m still aching, but the heat has definitely loosened my back muscles a little.

I return home, walk the dog and light the fire.

I’m out of the house early today – my wife’s car is ready to be picked up from the garage (it has been in for a service) – so I take my wife over to the garage in Hevingham to collect it.

It’s groundhog day (again).   It’s cold, wet and grey, and I’m without motivation.  My day is almost a carbon copy of yesterday – dog walks, lounging around, splitting logs and a modest amount of cleaning and tidying.  There was a moment of levity when I walked our dog this afternoon – there were a couple of other dogs and their owners on the playing field, and our dog decided to steal the ball from one of the other dogs.   She led the three of us owners a merry dance, dodging us when we tried to catch her, and clamping the ball firmly between her teeth, refusing to return it when I did (eventually) detain her.  She allowed me (reluctantly) to prise a very soggy tennis ball from her jaws at the front door of our house.

It’s another grey day in Southrepps, but at least it is mostly dry today.  I’m not feeling like doing very much (or anything, really), so I spend much of the day replying to emails and comments on social media, and catching up on the news in The Metro online.

I have lazily allowed my designer stubble to become a straggly (and itchy) beard, so I decide to hack it back with my hair clippers and have a nice close wet shave.  I give myself a haircut while I’m at it – now looking much more presentable (and only cut myself twice with the razor!).

It’s a much colder day, and I had to scrape ice from my car windows this morning.  The log basket is empty, so I split a load of logs and carry them indoors for the fire this evening.  I also run the vacuum cleaner around downstairs.

My wife and I planned to go for a swim and sauna this evening, but when she arrives home, my wife doesn’t feel up to it (and neither do I, so that’s alright).

I drive to North Walsham this lunchtime to accompany my wife’s daughter-in-law to the Citizens Advice Bureau (CAB).  She needs some advice on a legal matter concerning a car that they bought from a Volkswagen dealer (Vindis) that turned out to have finance outstanding from the previous owner.  She has now been informed that Volkswagen Finance have permission from the courts to repossess the car, even though she paid in full for it, in cash.  I’m not really much help in this matter, but I’m there in a supporting role!

It’s raining most of the day in Southrepps, which means that dog walks are fairly brief, but at least it relents for an hour or so while I’m in North Walsham.

We leave the CAB feeling quite positive, because they have been able to provide us with the necessary legal information and phraseology to challenge the decision of the court (or, at least, to force the dealer to compensate them).

I pick my wife up from work this afternoon – her car is going in for a service, so she’s going to be borrowing mine for a day or two.

It’s a day of cleaning and tidying and throwing junk away.   My wife is buzzing around the house like a frenetic wasp, doing the laundry, cleaning the bathroom, putting boxes in the loft, filling her car with junk to take to the tip.   I feel that I’m in the way, and spend most of the time sitting quietly on the sofa in the lounge.

When my wife drives to the tip with her car loaded with rubbish, I leap into action, armed with the vacuum cleaner, and vacuum the house from top to bottom.  My wife has brought a few bags and boxes downstairs for me to sort through, so I sort through those and create a heap of scrap paper to go into the recycling bin.

And….  relax!!

My wife and I are attending a Christmas fair (organised by her eldest son’s partner) at Hevingham village hall today, so we are up reasonably early (for a Saturday) and my wife walks the dog while I get on with the task of posting links to my latest vlog on social media and various online Parkinson’s Disease forums.

The Christmas fair is a runaway success and it appears that the whole village has descended upon it.  I find it all a bit too crowded and spend most of the time in a quiet corner with cups of tea and a good slice of lemon drizzle cake.

We return to Southrepps just as daylight is starting to fade.  My wife gets dog walking duties whilst I split logs, fill the log basket and light the fire.

I didn’t make as much progress with my weekly vlog yesterday as I would have liked, so I’m feeling under pressure today.  I need to have it completed before I go to Cromer this afternoon for a meeting with my Member of Parliament, Norman Lamb.   My voice is a little better than it was last Friday, but I’m still struggling with it – 66 takes were required last week, 57 this week (which is almost double what I would consider to be “normal”).

I manage to finish the filming and editing before I have to leave the house to drive to Cromer, leaving my MacBook to create the video file while I’m out.

My meeting with Norman is very encouraging.  He understands the issues I raise instantly, branding the fact that I’m being denied access to exenatide (despite the support of my doctor and two consultant neurologists) as “scandalous” (which it is!).  He dictates three letters while I am there (to the head of the health trust, and two other senior figures in the healthcare world – I can’t remember exactly who they are) labelling these missives as “extremely urgent” and requesting a reply within 14 days to prevent adverse publicity.  He asks me if I want him to add my request for medicinal cannabis to these letters, but we agree that the request for exenatide is most pressing and we really don’t want to muddy the waters.  I leave the meeting feeling very positive.

When I get home, my wife is back from work, and is busy cooking our evening meal.   I upload my vlog to my YouTube channel, publish it and call it a day!

I still lack motivation, but I do feel that I have a little more “get up and go” than I had yesterday.  The weather is still pretty dire – grey and windy, but at least it isn’t raining and it seems a little brighter today.   I feel a tad rigid this morning – maybe I slept in an awkward position, or perhaps it is just Parkinson’s.  Either way, I have significant pain in my upper back and struggle to sit comfortably on the sofa.  I decide that a sauna might help, so, after my usual routine (tea, nutriblast, dog walk and PopMaster) I get a few things together and head off to Woodland Holiday Park.  The heat certainly helps, and I feel that I am moving a little more freely afterwards, and I’m not in so much pain.

I’m starting work on my weekly vlog today, because I have my meeting with Norman Lamb (my Member of Parliament) tomorrow afternoon to discuss the local health trust’s refusal to permit certain medications for me, so the afternoon is spent deciding on a subject (impulsive and compulsive behaviour in Parkinson’s Disease), and I make a start on researching and writing a script.  I grab a few logs from the stack of wood in the back garden (ones that don’t require splitting, because I don’t feel up to wielding a log splitting maul at the moment), fill the log basket, light the fire, have a quick tidy-up and run the vacuum cleaner around downstairs.

The weather here in Norfolk ain’t great today.  It’s raining, grey and windy.  I wonder if the weather has an effect on my mood, because I’m feeling spectacularly unmotivated (again), and really struggle to do anything at all.  I know that apathy/lack of motivation/depression are all a part of the Parkinson’s Disease package, but perhaps I’m additionally suffering with seasonal affective disorder (SAD), so perhaps I need to put a light box on my Christmas present list (that I haven’t been able to motivate myself to write, as yet).

The dog drags me out for a quick walk around the field this morning – I’m very glad to get back inside the house in time for PopMaster, and I spend much of the remainder of the day just sitting on the sofa in the lounge, reading The Metro, and trying to do a little Christmas shopping online.

The dog persuades me to take her for another brief excursion late this afternoon, and then I split a basket load of logs and carry them into the house for this evening’s fire.  I tidy the kitchen and light the fire before my wife arrives home.

I really need to apply for the renewal of my “blue badge” today.  I had an email from Norfolk County Council some time ago now, warning me that my current badge expires soon.  It’s not something that I ever envisaged myself needing, but now I have had one it is difficult to imagine life without it.  It is sometimes embarrassing to use it when you have a hidden illness – I see people staring as I get out of the car, and you can almost hear them thinking “what’s he doing in a disabled parking space?  He’s not disabled!”.  It’s even worse when I’m in my car (rather than my wife’s), because it’s a sports car – sick people aren’t allowed to have sports cars, didn’t you know?  I almost feel obliged to hobble or stagger a little as I get out of the car, just to give some some sort of visual evidence, but as my Parkinson’s progresses then the hobbling and staggering becomes unavoidable in any case.

I print out the application form from the council website, sign and date it, and then set about finding all of the required supporting documentation to prove that I am who I say I am, and that I am entitled to be issued with another blue badge – they already have proof of my identity from my original application, so surely they just need to confirm that I’m still eligible?   It’s not worth arguing about, though – if you don’t play the game according to the rules (no matter how ridiculous) then you lose…  I locate all of the necessary paperwork, scan it in to my MacBook, and upload them to the council website.

Once that’s done, I walk the dog, split some logs and fill the log basket, light the fire (it’s cold outside, and I’m feeling chilly) and vacuum downstairs before my wife gets home from work.

I have a few admin tasks to complete, but I’m a little under-motivated at the moment.  I started writing an email to Norman Lamb (my Member of Parliament) last week, in advance of my meeting with him this Friday, and I really need to finish it and get it sent to him today.  Before I can get stuck back into that, I have a dog that needs walking, a host of messages and comments on social media that I need to respond to, and an application form for renewal of my “blue badge” that needs to be completed, scanned into my MacBook and emailed to Norfolk County Council.  I prioritise, take the dog for a walk and quickly respond to my social media messages and comments.  I compose a fairly detailed and lengthy email to Norman Lamb, setting out my reasons for consulting him (I want his advice on two matters concerning the local health trust – their refusal to prescribe exenatide for me, and their likely refusal to prescribe medicinal cannabis for me).  I strongly suspect that I won’t get anywhere with either of these problems, but if you don’t ask, you don’t get!

I finish typing the email just as dusk is falling, and send it before I take the dog for her afternoon stroll.  On return, I split a few logs and fill the log basket for tonight’s fire, and have a bit of a tidy-up in the kitchen.

My wife arrives home from work, and we go to Woodland Holiday Park for a swim and sauna – neither of us feels much like it, though, and we cut our visit short after half an hour or so, head off home and get an early night.

I have a slightly better day today, in terms of feeling that I have made myself useful.  My wife goes Christmas shopping in Norwich this morning, not returning until late afternoon.   I give “my corner” (the area that I habitually occupy in the lounge) a thorough clean, and go through all of the documents and mail that I have accumulated – getting rid of unnecessary paperwork, filling away utility bills, and prioritising documents that require my attention.  I then clean one of the Chesterfield sofas in the lounge, washing the leather before applying leather “food”, and buffing it to a nice shine.  Next on the agenda is the fireplace, and I wash the slate hearth and the outside of the wood burner.  I split a few logs and fill the log basket, and then run the vacuum cleaner around downstairs.  I take the dog for her afternoon walk, and light the fire just as my wife returns, laden down with shopping bags.

It’s a “nothing” kind of day (for me, in any case).  I have a good lie-in this morning, not getting out of bed until after 10am.  I sit on the sofa drinking my tea and Nutriblast, and catching up on reading The Metro online (I have at least eight unread editions on my iPad) while my wife runs around doing the laundry, changing the bed, cleaning the bathroom, etc.   I feel guilty that she is doing everything, but if I try to help then I feel that I just get in the way.

I do get up off my backside this afternoon, split a basket load of logs for the fire this evening, and also clean the windows of the woodburner.

This evening my wife and I go for a swim and sauna at Woodland Holiday Park.  I’m still snuffling with the remnants of my cold, so only swim a couple of lengths and spend the rest of the time in the sauna.  My wife swims her target 100 lengths.

I’m not having a good day, voice-wise.  I spend the morning researching and scripting my weekly vlog, and then the trouble starts – when I am filming myself.  Strangling my sentences.  Slurring.  Mispronouncing words.  Incorrect emphasis.  To cut a long story short, I reckon that around 20 to 30 takes is usual for a 4 to 5 minute video – this week I had 66!   Even though l have all of these takes (mostly re-takes) to choose from, I am unhappy with the final result, and feel that I would struggle to understand every word that I’m saying, if it wasn’t for the subtitles.

I walk the dog and then fill the log basket whilst my MacBook is busy outputting the finished video, and then upload it to my YouTube channel.  My wife arrives home from work and cooks our evening meal, while I post links to my vlog on Facebook, Twitter, Instagram and a number of online Parkinson’s Disease forums that I subscribe to.

I’m definitely on the mend – my aches and pains have subsided to a tolerable (more normal) level, my head feels clearer and my dripping nose is dripping less than it has been.  I take the dog for a walk, listen to PopMaster and then research prices for posting a roll of upholstery fabric to a company in Norwich (for my wife) – it turns out to be so expensive to send it by courier that I offer to deliver it myself!

I decide to go to Woodland Holiday Park for a sauna – I’m not feeling up to swimming, but the thought of warming my bones up is most appealing.  I spend a swift half hour in the sauna, dash back home to take the dog for her afternoon walk, and then drive to Norwich to deliver my wife’s fabric.  On the way back, I stop off at my wife’s youngest son’s house in Hevingham – it’s his (and his wife’s) first wedding anniversary, and my wife and I have a gift and card for them.  We don’t stay for too long, and I head back home to feed the dog and light the fire while my wife goes to Lidl in North Walsham to get some groceries.

It’s my third day of feeling like death warmed-up, and I have another day of doing very little.  I take the dog for her morning walk (at least it isn’t raining this morning, and the wind has dropped) and then I sort out a problem with our previous electricity supplier, who decided to take money from my bank account despite the fact that they no longer supply us.  I  ensure that I cancel my direct debit instruction so that they can’t repeat their mistake.

I drive over to my doctor’s surgery in Aldborough to pick up a repeat prescription, and then tidy up downstairs, run the vacuum around and then split a few logs and fill the log basket.

My wife is late home this evening (she’s babysitting our youngest granddaughter), so I rustle up a cheese and ham omelette for my dinner, light the fire and watch some rubbish (The IT Crowd) on Netflix.

I’m still under the weather, still not feeling up to doing anything at all.  The fact that it’s cold, wet and windy outside isn’t helping at all.  I dash out with the dog mid-morning when it stops raining for a few minutes, but get caught in a downpour of hail, which does nothing to improve my mood.  It’s a really grey day, and it feels like darkness is falling all day long.  Another pause in precipitation sees me hastily (well, as hastily as Parkinson’s allows) filling the log basket from the stack of logs in the back garden.   I light the fire at lunchtime – much earlier than usual, but I’m not feeling great, so that justifies it!

All too soon, it’s time for the dog’s afternoon walk – it’s still raining, but darkness is closing in, so there’s no delaying it.  There’s three other dogs and their walkers on the field, so our dog gets a run around to use up some of her energy, but we’re soon headed back home to the warmth of the fire.

I have an appointment to see my Member of Parliament (Norman Lamb) on the 31st November, and I want to send him some details of the matter that I’m consulting him about (the local health trust’s refusal to fund exenatide for me, and the likely refusal of the trust to allow my neurologist to prescribe medicinal cannabis for me), so I make a start on an email detailing the circumstances so that he is up to speed with things.

I’m feeling a bit sorry for myself today.  My nose is dripping like a tap (but then, anyone who has ever seen me will appreciate that noses do run in our family), my head feels as though it is stuffed with cotton wool and I ache all over.  I venture out of the house three times – twice to take the dog for her walk, and once to fill the log basket.   I do very little else – replying to some messages that I’ve received on social media, lighting the fire (because it’s cold and wet outside, and watching the flicker of the flames makes me feel better), and (rather belatedly, because I forgot) putting a gammon joint on to cook for tonight’s dinner.

After dinner I apply a large Dalwhinnie, self-medicate with some cannabis, and watch the final episodes of The End Of The F***king World on Netflix.

I’m full of cold this morning, having successfully incubated (in record time) the germs that our youngest granddaughter has been spraying in my direction for the last 24 hours or so.  I’m not feeling too sharp (and I’m still aching from stacking all those logs on Friday night), so I spend the day sitting quietly in front of the fire, only venturing outside to replenish the log basket when absolutely necessary, and to take the dog for her afternoon walk (my wife took her this morning because she felt sorry for me).

This evening we go to Woodland Holiday Park where my wife swims 100 lengths of the pool while I simmer gently in the sauna.

We are in Hevingham for the day, at the house of my wife’s youngest son and his wife, looking after our youngest granddaughter.  She is full of cold, so I resign myself to catching it – I don’t often catch colds, but then again I’m not often cooped up in such close proximity to a germ laden child!   In spite of being very, very snotty, she is quite happy and a pleasure to be around.

By the time evening rolls around and we head back to Southrepps (taking our granddaughter with us), I imagine that I have the beginnings of a sore throat (surely I can’t have developed symptoms so quickly?).

I decide to apply the tried and tested remedy – alcohol!  I vaporise a little cannabis (to help me relax and get off to sleep), pour myself a healthy measure of black cherry schnapps, settle down in front of the telly with my wife, and watch an episode of The End Of The F***ing World on Netflix – a recommendation from my wife’s ex-husband.

It’s a busy Friday, as usual – I have my weekly vlog to research, script, film and edit, I have another delivery of logs at 6pm, and I need to be in Hevingham as soon as possible after receiving the log delivery because my wife and I are looking after our youngest granddaughter for a couple of nights whilst her parents are away in Birmingham attending a Florence And The Machine concert and The Supervet.

I’m busily editing the video when the log man knocks at the front door (30 minutes early) and I lose editing momentum while we move the wood from his trailer into our back garden using my wife’s pink wheelbarrow – very fetching!  Luckily it is dark!

By the time I’ve stacked all of the wood neatly against the back wall in the garden, finished my vlog and published it on my YouTube channel, vacuumed downstairs, grabbed a handful of clean clothes and packed the dog into my car, it’s almost 8.30pm and my wife’s beginning to get a little tetchy (she’s already in Hevingham awaiting my arrival).

I accompany my wife to work today (didn’t you know, it’s “take your blithering idiot to work” day?).  My wife has two appointments this morning to measure up for curtain poles, curtains and loose covers, and I offered my services (as chief tape measure holder) which she gratefully accepted.  So, we are up a little earlier than usual – my wife preparing tea, coffee and cheese omelettes while I take the dog for her morning ablutions.

We leave Southrepps at 8am to drive to Wellingham and Syderstone where her clients properties are located, and it’s mid-afternoon by the time my wife drops me off back home.  The dog is pleased to see me, and we go for a wander around the field by the village hall before darkness falls.

This evening my wife and I go for a swim and sauna at Woodland Holiday Park.  I swim 4 lengths and spend the rest of the time working up a sweat in the sauna, my wife puts me to shame by swimming 80 lengths.

There has been a new donation to my JustGiving campaign, which is great – there was an initial flurry of donations when I launched it, but there hadn’t been any for several weeks so I was thinking that perhaps that was it!  Maybe it was precipitated by my latest update?

I decide to go to the Woodland Holiday Park to use the pool and sauna, so I grab towels, wash bag and a bottle of water and drive over to Trimingham.  It’s only when I’m in the changing cubicle that I realise that I’ve forgotten my swimming trunks – stupid boy!  The receptionist gives me a strange look as I walk out, 5 minutes after I arrived.

I take care of a few things that I needed to do at home, and then depart for Woodlands at Trimingham (again), this time I make sure that my trunks are in the bag!

It’s my stepdaughter-in-law’s birthday today, so the whole family descend on their house this evening to give her her birthday gifts and share a takeaway.

Our boat has been on my mind since we returned from holiday – I bought a new float switch for the bilge pump a couple of months ago, and still haven’t fitted it (in essence, the float switch operates the bilge pump when the amount of water in the bilges rises to a certain level – without this, the boat is fairly liable to sink).  After taking the dog for her morning walk and listening to PopMaster, I grab the boat keys and head over to Wayford Bridge (where our boat is moored) to check that it’s still afloat and to fit the new float switch.

I had been worrying unnecessarily – the old float switch (which had previously malfunctioned) has been busy doing the job that it was made for, and the boat is fine.  I didn’t fit the new float switch, though, because I left it at home (I wrongly thought that I had taken it to the boat and left it there).  I start the engine and run it for quarter of an hour or so (to ensure that the batteries are charged) whilst I’m clearing away fallen leaves from the decks.  I then amble back towards Southrepps, stopping at Lidl in North Walsham to buy some pecan nuts and almonds to roast (to snack on whilst watching telly).

The dog drags me around the field by the village hall just as it is starting to get dark, and then I split a few logs and fill the log basket.  I intended to pop over to Woodland Holiday Park for a quick swim and sauna, but I feel myself flagging and decide to give it a miss today – maybe tomorrow…

I light the fire, and await the return of my wife.

Sometimes the fact that I don’t have the energy that I used to have is brought home to me, and today is one of those times.   Going shopping and then swimming yesterday (even if I did only swim half a dozen lengths) has significantly depleted my meagre energy supply.  I didn’t notice a significant increase in fatigue when I took the dog for her walks, but chopping up a basketful of kindling and then splitting a few logs for the fire tonight was almost beyond my capability.  I was huffing and puffing like an asthmatic steam engine when I carried the log basket into the house from the back garden, and had to take a seat and recover afterwards.  An hour and a half later, I felt up to the gargantuan task of running the vacuum around downstairs and then lighting the fire.

It seems a little pathetic to complain about such trivia, but it it’s fast becoming an issue, and I realise that, in the not to distant future, I’m simply not going to be able to accomplish these tasks, and that’s a depressing thought.  It’s also the thought behind my frequent holidaying – I’m travelling while I’m still able to do so, and actually spent some time today researching holidays for next year (and I’ve only been home from the last one for a fortnight!).

My wife and I decide to go to shopping in Roy’s of Wroxham this morning – we need to find a (belated) birthday present for my wife’s younger brother, and we are also on the lookout for suitable Christmas presents for quite a lot of people!

I get a little claustrophobic when shopping, so its not long before I’ve had enough and am ready to get back to the car and drive home – but we did find a few presents, and I even found a nice Weird Fish top that my wife bought for me.

This evening we go to Woodland (a local holiday/leisure park) to use their swimming pool and sauna.  My wife swims 100 lengths of the pool whilst I only manage half a dozen – I do, however, excel at sitting in the sauna and sweating profusely.  We get back home to a lovely turkey chilli for our dinner, and then watch another couple of episodes of Happy Valley on Netflix.

I’m left to my own devices today – my wife took a day off this week to look after our youngest granddaughter, so she felt obliged to go to work today – so I take the dog for het morning walk and them spend the rest of the morning posting links to my latest vlog on Twitter, Instagram and various Parkinson’s Disease forums (I already posted links on Facebook last night).

My eldest nephew and his girlfriend call in to see me this afternoon, which is a pleasant surprise because I haven’t seen them for several months.  They drag me (kicking and screaming) over to The Vernon Arms for a couple of pints of Abbot Ale and a good old chinwag.  It’s almost dark when we leave the pub, so I take the dog for her afternoon walk and then bid farewell to my visitors.

My wife arrives home from work soon afterwards and prepares our evening meal while I get the fire going, and then we sit down to watch an episode or two of Happy Valley on Netflix.

My voice is giving me cause for concern (again).   My neighbour told me I was suffering with an “incorrect feedback loop” when I told him I was unhappy with my clarity of diction, insisting that my voice was fine – but I can clearly hear the difference between my recent vlogs and those that I made 12 months ago.  I film myself for my weekly vlog (with a multitude of retakes), finally resigning myself to the fact that my voice isn’t going to get any clearer, no matter how many times I try.  The latest weapon in my arsenal is a cup of ginger and lemon tea, which I sip in between takes, and I feel that this does help a little.

I take the dog for her afternoon walk whilst transferring the raw footage from my camcorder to my MacBook, and then get stuck into editing it.  All finished, uploaded and published by the time my wife arrives home from work, which is good.   I light the fire while she prepares dinner, and then we watch a couple of episodes of Happy Valley on Netflix., which is proving to be very good!

I’m still pretty knackered today (or perhaps I just don’t feel very motivated – whatever!) so I have another day of doing very little.  I make a (very) short list of things that I need to achieve – go to the allotment and harvest some spinach (which I do when taking the dog out for her afternoon walk – I also harvest a couple of fairly ropey cabbages and pick up all of the onions, which have been lying on the ground drying out for several weeks now), split a few logs and fill the log basket for the fire this evening (which I do just as it’s beginning to get dark), and vacuum downstairs (which I do while the dog is eating her dinner in the conservatory – she hates the noise of the vacuum cleaner).

Mid-afternoon, I pop into see one of our neighbours for a chat and a cup of tea – he has Crohn’s Disease, and is interested in hearing how our friend (who also has Crohn’s Disease) is faring with treating her condition with cannabis oil (she is doing really well – cannabis has proved to be a miracle drug for her).

I light the woodburner before my wife arrives home, and then we settle down in front of the telly (after we’ve had some dinner) and choose something to watch on Netflix.

I’m really glad that I took the time and trouble to put another tarpaulin over the logs in our back garden yesterday, because it’s chucking it down with rain this morning.  Its gone 11am by the time it has stopped and the dog and I venture out for our (delayed) morning stroll.

The last couple of days have caught up with me today, and I’m not feeling at all energetic – I spend a lot of the day doing very little  (aside from dog walking), although I do split a few logs and fill the log basket in case we want to have a fire this evening.

I feel surprisingly okay today, in spite of my log carrying and stacking exertions yesterday evening – I was expecting to be aching!

My wife and I are looking after our youngest granddaughter today, and we plan to take her over to Wroxham Barns where they have a collection of farm animals for children to see, so my wife is up early and out of the house to collect her from Hevingham, while I stay in Southrepps to walk the dog.

We drive over to Wroxham Barns and spend a pleasant couple of hours visiting the array of goats, sheep, pigs, donkeys, chickens, etc.   We end up having a sandwich and a drink in the cafe there, before heading off back to Southrepps.

My wife drives over to Hevingham (again) to return our granddaughter to her rightful owners, while I take the dog for another walk, cover over our carefully stacked logs with a tarpaulin, vacuum downstairs and then light the fire.

I said I was taking a couple of weeks off from blogging, coinciding with a couple of weeks holiday.  How quickly two weeks has become three weeks, but now, I’m back!

My wife and I had an amazing time – soaking up the rays, eating and drinking entirely too much, and snorkelling in warm, clear seas (not necessarily in that order!).  My Parkinson’s didn’t restrict me too much – I don’t have a huge amount of energy these days, but then there was no pressure to expend any, I was able to do as much (or as little) as I felt capable of.  While we were away, we celebrated our 5th wedding anniversary, so that made our holiday particularly special.  Travelling is a tiring business, though, and the week subsequent to our holiday has been spent recovering from the travelling, adjusting to the time difference, unpacking suitcases (mostly by my wife), washing all of our holiday clothing (all done by my wife) and generally getting back into the swing of life in Southrepps.

Whilst we were away from the UK, I went without my usual medication (cannabis) and depended upon the demon drink to relax me and to help me get off to sleep.  It’s a relief to replace alcoholic intoxication with herbal, and herbal is so much more effective!  So, I should be jumping for joy at the news they cannabis is now legal (from 1st November 2018) for medicinal use – surely all I need to do now is request it from my GP?  Wrong!!!  Even if my GP were allowed to prescribe it (which he isn’t – only specialist clinicians are permitted), the government guidelines for the prescription of cannabis are so restrictive that it is unlikely that anyone will be able to quality for it – what a surprise!  (NOT!).  The battle for access to this amazing plant rages on!

The weather changed while we were gone, and there is now a definite nip in the air, so thoughts turn to cosy evenings with the woodburner blazing away.  I contact the person we last purchased logs from, and arrange delivery of a cubic metre of hardwood logs this evening.  It’s extremely dark when the log man arrives with his trailerful of wood, so I illuminate the back garden with the light that I use for filming, and we cart the logs in from the road using my wife’s pink wheelbarrow – very fetching!  My wife arrives home from work in time to help me stack them in the corner of our back garden, and then I fill the log basket, light the fire and we can relax.

We are going away on holiday for a couple of weeks, so there’s one or two things that really need attending to before we disappear.   We abandoned our boat two weeks ago when I bashed my head and had to go to the minor injuries unit at the Norfolk and Norwich Hospital, so this morning we head off to Wayford Bridge and clean up the mess that we left.

We drop into Lidl in North Walsham for a few bits and pieces on our way back to Southrepps, where I “test load” my car with our suitcases and hand luggage – it’s always a bit of a struggle, and it’s easier to make adjustments while the bags are empty.

We drive over to Hevingham to see (and say goodbye to) my wife’s sons, their partners and our grandchildren, and then it’s back to base to do some serious packing!

I’m taking a break from daily blogging whilst we are away, so I’ll be back in a couple of weeks.  Thanks for reading!

I spend the morning posting links to my latest vlog on social media, and then make the rash decision to wash my car (it’s looking fairly grubby).  I intended to wash and polish the outside, and clean the windows, seats, dashboard, and vacuum the inside, but by the time I’ve washed it, I’m flagging.  By the time I’ve finished polishing it, I’m practically on my knees.  It seems ridiculous that I should be so exhausted from such little effort, but these days washing the car is my pre-Parkinson’s equivalent of running a marathon (not that I ever ran a marathon, but you know what I mean).  I collapse onto the sofa to recover, and the dog wants me to take her for a walk, but there’s no chance of that at the moment.   My wife arrives home from work and decides to take the dog out and grab some spinach from the allotment at the same time, so that solves that little problem.

I’m feeling guilty because I haven’t done any housework, so (while my wife is walking the dog) I quickly clear away the mess I’ve made with car cleaning gear, and then run the vacuum cleaner around downstairs.

I spend the morning writing a script for a vlog that I’m preparing for publication whilst my wife and I are away on holiday.   I film myself (with a large number of retakes, mainly due to dissatisfaction with my voice), and then transfer the raw footage to my MacBook and get cracking with editing it.  I finish work on the video well ahead of schedule (surprisingly), and upload it to my YouTube channel before taking a drive out to North Walsham to buy some eggs and milk from Lidl.

I have had some noticeable progression this week – my back has been more rigid and much more painful.  I have taken cannabis for pain relief on three occasions, in addition to my bedtime dose.  I’ve heard that some DBS patients manage to achieve improvements in muscular rigidity, so I’ll have to ask my DBS programmer about it when I next go for a tune-up.

Motivation has returned (just a little bit) today.  I’m still not feeling great, but I do manage to achieve a few things.

I print off the itinerary for our holiday, then enter all of the information that the airline requires in advance of our flights.  I check to see whether the Special Assistance (that I requested through our travel company a couple of months so) has been registered with the airline and/or the airport – it hasn’t, so I ensure that my wife and I are “on the list”, because it makes such a difference to me.  I check our reservation for a hire car, and discover that I can save almost £50 by changing to a vehicle very similar to the one that I’ve booked, so I email the hire company and get them to make the necessary changes to our booking.  I print out the various pieces of paper that relate to car parking at the airport, the hotel that we are staying in (near the airport before we fly out), the transfers, accommodation and car hire (once we reach our destination).  I check currency exchange rates, and order our currency for collection at the airport.

The afternoon dog walk includes a visit to the allotment, and I harvest some spinach and quite a lot of runner beans.  When I get back home, I vacuum downstairs, tidy the kitchen, put the recycling bin out (for collection tomorrow) and then finish off uploading tomorrow’s vlog to my YouTube channel and preparing it for publication.

My motivation is down the toilet again.  I really want to get this week’s vlog scripted, filmed, edited and uploaded to my YouTube channel, but I’m really struggling.  A script that would normally take me a maximum of two hours took me almost 5 hours, and I don’t feel that I made a great job of it, either.  Filming is also a slow process because I’m unhappy with my voice, which is high-pitched, slurred and indistinct.  I try changing my neurostimulator over to group “B” settings to see if that is any better, but I can’t say that I notice any difference.  I finish the editing around 7.30pm, which isn’t too bad (all things considered), but I keep spotting silly mistakes that I made because I wasn’t concentrating, so by the time I’ve corrected the editing errors and recreated the video it’s after 9pm (and my wife is still at work).  I will upload it to YouTube tomorrow.

After several days of feeling more motivated than I have done for quite some time, I’m back to not really wanting to do anything – or rather, wanting to do stuff, but not being able to motivate myself into action.

I wanted to script and film this week’s vlog today, so that I only have one more video to make (for publication while we are away on holiday), but I barely make a start on researching my chosen topic (fasting and Parkinson’s Disease), so I’ll have to try to accomplish this tomorrow now.

I get the suitcases and hand luggage bags out of the loft, ready to start packing, and start adding to my list of things that we need to take with us.  I need to print out a load of documentation, but I don’t get around to it.  I also want to ring the holiday company to ensure that they have booked Special Assistance for me at the airport (both ways), but I don’t get around to that, either.  I can see that Friday is going to be a day of blind panic as realisation dawns that time is running out…

My hard-working wife is working hard again today.  I’m not feeling very energetic, so spend much of the day researching things for us to do while were are away on holiday, calculating how much currency we will need to take with us, checking currency exchange rates (and reserving currency for us to collect at the airport), and looking for a pair of size 13 swimming shoes and snorkeling fins.

I do the usual dog walking, and visit the allotment to harvest some spinach and kale, but that’s the extent of my physical activity today.

My wife is at work today, trying to clear the decks before taking a well-deserved break, so I spend the day editing (again) the vlog that I filmed during the last week, and which I intend to publish whilst we are on holiday.  It’s a lot more complicated than my usual weekly vlogs because it’s not just me, talking to camera from a script – I have multiple contributors, all of whom are completely unscripted, which makes the editing process much slower.

My wife returns home at around 8pm, and I have just finished creating the video to upload to my YouTube channel.

It’s the anniversary of the first time that my wife and I met (8 years ago), so we treat ourselves to a bottle of red wine with our dinner tonight.

I film two vlogs this morning, and edit the one that I am publishing later today.  I finish this week’s vlog, upload it to my YouTube channel and publish it.  Then I post links to it on social media and a number of Parkinson’s Disease forums.   I’m well ahead of the game this week, so I can make a start on editing one of the vlogs that I’m preparing for when my wife and I go away on holiday later this month.

We are invited to dinner at my wife’s eldest son’s house this evening, to celebrate the birthday of a mutual friend, so I drive over to Hevingham after walking the dog this afternoon, and meet up with the gang.   A pleasantly chaotic evening ensues, with great food (a Thai curry), a most impressive gluten-free birthday cake (made by my wife’s youngest son), and brilliant company.

I was expecting to film a couple more people for one of my vlogs today, but they both appear to have vanished from the face of the earth, so I spend my day writing scripts – one for this week’s vlog, and one for the vlog that I intend to publish while we are away on holiday later on in the month.

Aside from script writing, I pop down to the allotment to harvest some spinach and runner beans, walk the dog (twice) and vacuum downstairs.

My wife is working late (again) so I take the opportunity to film this week’s vlog, and also the vlog that I’m preparing in advance.   Tomorrow will be a fun filled day of editing!

That’s all, folks!

I’m filming more people for one of the vlogs that I’m preparing in advance of our holiday later this month, so this morning (after walking the dog) I drop in on my neighbours to confirm that they are still prepared to be interviewed (they are!).

I spend some time working on the script for the vlog, and then get the filming gear together and take it over to my neighbours house, where I set it up in their front room.  I conduct three interviews, and then sit down for a cup of tea, a couple of Jaffa Cakes and a chin wag with my neighbours.

When I take the dog for her afternoon walk I bump into a couple of other locals, and manage to persuade them to be interviewed for my vlog as well, so it looks like I’ll be doing some more filming tomorrow.

I have a pretty good day today.  I’m feeling a bit more motivated than is usual, so this morning I clear up all of the dead leaves from our doorstep and little front garden, and then I vacuum the entire house.  It takes it out of me, but I’m feeling really pleased that I have been able to do something useful.

Late this afternoon I gather together my filming paraphernalia (camera, light and tripod) and drive over to Hevingham where I interview my wife’s ex-husband, her two sons and her youngest son’s wife for a vlog that I am making, to be published whilst we are away on holiday.  I get a lot of usable footage, and my mind is working overtime on how it will all hang together when I edit it.

I have an appointment with my neurologist this morning so, armed with evidence of the efficacy of medicinal cannabis (for me) I drive to the Norfolk and Norwich Hospital to ask him two things: (1) to prescribe me exenatide, a type 2 diabetes drug that has been shown to arrest the progression of Parkinson’s Disease in a recent clinical trial.  My doctor was unable to prescribe it to me because the prescription service said that there was “insufficient evidence of benefit”, but he assured me that my neurologist would be able to do so; and (2) to apply to the Home Office’s “Expert Panel” for medicinal cannabis on prescription.

I failed (miserably) on both counts.  My neurologist told me that he would have to apply to the Medical and Drugs Board for permission to prescribe exenatide, that he was a member of that board (and, therefore, well versed in the way that these things work) and that, in his heart of hearts, he knew that the request would be rejected.  When I mentioned applying for medicinal cannabis, he could barely keep the grimace from his face, and then said “cannabis is not indicated for Parkinson’s”.   I explained that I found it extremely beneficial, and that I had evidence of that benefit.  I also told him that my Member of Parliament (Norman Lamb) was aware of my intention to ask for medicinal cannabis, and fully supported me.  In the end, he said that he wouldn’t apply for it at the same time as applying for exenatide because he didn’t want to “overwhelm” the board.   They must be extremely easily overwhelmed, that’s all I can say!  I did get a commitment from him that he would be prepared to apply for medicinal cannabis after the application for exenatide has been considered, which is better than an outright refusal, I suppose, but I leave the hospital with a heavy heart.

We are expecting my wife’s two sons, their partners and our two grandchildren to descend on the boatyard at Wayford Bridge this morning for a leisurely trip down the River Ant, so we are up, breakfasted, car loaded with food, boating paraphernalia and dog, and ready to leave the house by 10am – quite impressive for a Sunday!

Once everybody is on board, we motor down the River Ant, across Barton Broad to How Hill, where we moor up, and my wife prepares bacon butties, cheesy chips and drinks for everyone.  Ice creams are procured from the local shop for dessert, and everybody’s happy.

Getting ready for the return trip, I manage to lose my balance, fall backwards and bash the back of my head on a metal bracket attached to the boat windscreen.  It hurts (a bit) and I have drawn blood, but it doesn’t seem too serious so my wife holds a cold, wet handful of tissues over the back of my head while I steer the boat back up the river to Wayford Bridge.  As we are getting everybody (and everything) off the boat and onto dry land, I put my hand to the back of my head and can feel that I have a gash in my scalp, so my wife and I head over to the minor injuries at the Norfolk and Norwich Hospital to get it checked out.  Luckily the injury is fairly superficial, and a very nice chap cleans the wound and glues my scalp back together again.  Not quite the ending to the day that we had planned, but all’s well that ends well.

We are taking the family out on the boat tomorrow, so today my wife and I are making preparations.  We go to Wayford Bridge (where our boat is moored) to check that the engine will start (it did), make sure that the bilge pump is working properly (it is) and to give the whole boat a bit of a clean.

We then head over to Spixworth to say happy birthday to my sister-in-law, give her her card and present, and to film her for one of my vlogs.  The filming goes well, and I’m pleased with what my sister-in-law says in response to my questions.   One down and about half a dozen or so to go!

We head back to Southrepps just as darkness is falling – the nights are really drawing in now, which is a reminder that summer is well and truly over.  Fingers crossed that the weather stays fine for our family trip down the river tomorrow!

It’s vlog day, and I’m vlogging about Restless Legs Syndrome (RLS), which is something that I’m reasonably familiar with!   Whilst I’m writing my script about RLS, I’m also thinking ahead for the two extra vlogs that I want to do before we go away on holiday, and I come up with what I think would make a great video (I’m not telling – you’ll have to wait and see) but which requires participation from friends and family (and not many people like having a camera pointed at them!).  I test the water by asking one of my neighbours if she’d be prepared to be interviewed for one of my vlogs and, after some initial hesitation, she agrees.  Now I just need to think about who else I could rope in.

My voice is particularly bad at the moment (even my wife remarked upon it the other day) and I really struggle to make myself intelligible – rehearsing what I’m going to say, practising my breathing techniques, exaggerating my enunciation and trying to project my voice.  I have quite a lot of re-takes before I’m happy with it (and I’m still not 100% happy with it), and then manage to get the footage transferred to my MacBook, edited, uploaded to my YouTube channel and published by the time my wife walks through the door.

I spend most of the day researching topics for my weekly vlogs – I intend to film a couple of extra videos prior to our holiday next month, so that I can schedule them to be published whilst we are away.  I’m struggling a little with motivation, though, and by the end of the day I really am not much further forward than I was at the start.

Yesterday I promised one of our neighbours that I would give her a lesson on using her iPhone to send and receive email and text messages, so this afternoon I wander over to their house to (hopefully) impart the requisite knowledge.  The back garden is a sea of expensive electric tools (they are in the middle of constructing a conservatory), but there’s no sign of anyone.  The back door to the house is open, but there’s no response when I call out “anybody home?”.  Even their dog has gone AWOL!  After five minutes or so of hanging around waiting for someone to appear, I return home – the lesson will have to wait for another day.

I visit the allotment when I take the dog for her afternoon walk, harvest some runner beans, spinach and kale, and do a bit of weeding.  Back at home, I vacuum downstairs and then collapse onto the sofa, exhausted.

I’m having another day of loafing about.  I have decided to do some vlogs in advance of our holiday (so that I can schedule them to be published whilst we are away), so I start researching a subject today.  I had a difficult time getting to sleep last night because of restless legs syndrome, so my wife has suggested that I vlog about that this week.  I hadn’t realised it could also affect the arms until last night, but it really was most uncomfortable, and something I could definitely do without.

One of my neighbours knocks on the door to ask for my assistance in constructing a scaffold platform, so I go across the road, help him to construct the platform, and have a cuppa and a chat with him and his wife.  While I’m up off my backside, I look around for something that I can achieve around the house.  I noticed yesterday (when I went into the loft to look for a trailing socket) that the loft hatch is just about to fall off its hinges (the hinge screws have been loose for quite some time), so I get the stepladders out, some new (longer) screws, and my electric screwdriver, and replace the hinge screws.

I receive a phone call from a television production company about a programme they are making for Channel 4 about cannabis, and they would like me to take part because of my use of cannabis to alleviate the symptoms of my Parkinson’s Disease.  I’m definitely interested in taking part, but it looks like they want to film while we are out of the country (on holiday) next month, which is a bit of a shame – I like to be involved in anything that raises awareness of PD and/or medicinal cannabis.

I’m not feeling very energetic or motivated, but I really don’t want to just sit on the sofa all day, so I decide to do a couple of easy jobs around the house.  After drinking my tea and nutriblast, walking the dog and listening to PopMaster, I clean the bathroom sink, then have a (successful) search in the loft for a trailing electrical socket so that my wife can plug her computer in at her end of the sofa.  I give the dog a much needed grooming, tidy the kitchen and vacuum downstairs.

I have a good video chat with one of my Facebook friends in British Columbia about the legalisation of cannabis over there, and the state of the UK’s drug laws.  It’s a little disheartening to hear that it has been legal for medicinal purposes in Canada since 2001, but the stigma surrounding this medicine still exists – it makes me realise what a long road we in the UK still have to travel.

I have a day of recovery, following our shopping trip to Norwich yesterday.  I sit quietly in the lounge of our little cottage and add a few items to my “To Do” list.

My wife and I plan to try following a ketogenic diet, following my research into the benefits for people with Parkinson’s for my vlog a couple of weeks ago – my wife doesn’t have Parkinson’s, but she wants to support me, wants to lose some weight (although she really doesn’t have any excess weight to lose) and it’s less hassle if we are both eating the same meals – so I spend some time this afternoon looking at recipes and foods that are recommended for the diet.  When my wife gets home from work, we go shopping at Lidl in North Walsham, and stock up on keto-friendly groceries.  We still have a few days work of non-keto food that we need to finish off, but at least we can gradually start getting used to the change in our diets.  We will be abandoning the diet when we go away on holiday next month, but we will resume it on our return (there should be some excess weight to lose by then!).

My JustGiving campaign gets a bit of a boost this evening – someone makes a donation of £100.  I’m gobsmacked at the generosity of people, and my friend (who I’m raising money for) is completely overwhelmed when I contact her to tell her.

There have been more donations to my JustGiving campaign when I check on progress this morning, which is great.  I need to figure out a way to maintain this without simply bombarding my friends and relations with requests for money.   I share the video story (that I made for the JustGiving page) on my personal Facebook page, and another couple of donations roll in.

My wife and I go into Norwich this afternoon, because we need to buy some clothes for our holiday next month.  It’s pouring with rain, so (thankfully) it wasn’t too crowded.  Because we wanted to buy Summer clothes, we were able to get some end of season bargains, and we’re both rather partial to a bargain.  After a couple of hours I’m shattered (even though I spent much of the time sitting down in a chair outside the changing rooms while my wife tried on most of the shop), and we head back home.

I’m feeling a little anxious about the JustGiving campaign that I launched yesterday – what if it’s a total failure?  Our friends are not the kind of people who sit out with a begging bowl, but I do know that they are not exactly flush with money and that they are currently running up a credit card debt that they simply cannot afford – and all because of the legal status of a plant!

She has been taking full extract cannabis oil for the last three or four weeks, and the improvement in her symptoms is dramatic.  She has weaned herself off a selection of pharmaceuticals, and feels better than she has felt in a long time.  She first started using cannabis around the start of the school Summer holidays, and it’s the first time in four years that she hasn’t spent at least some of the holiday period in hospital.  Her consultant (who has previously suggested to her that she might find some relief from using a “herbal remedy”) remarked that her inflammation seemed to have reduced, when he reviewed pictures taken during a colonoscopy that she had last week.  It’s just a coincidence (I hear our government cry), but I’m no great believer in coincidence – things happen for a reason.

By the end of the day, there is over £150 in donations, and I breathe a sigh of relief – there’s still a long way to go, but it’s a respectable start.

Today I am launching a JustGiving campaign for our friend who had bowel cancer and has Crohn’s Disease.   Not only do I want to make this the subject of my weekly vlog, but I want to create a video to go on the JustGiving page as well.  Martha Orbach (the artist that we got to know when I was having my DBS operation) has said that she will provide an illustration of hers to go on the page – I promised (some time ago) to record a video of myself walking (she wants to study a Parkinson’s walk so that she can mimic it in an animation she is doing about Parkinson’s Disease and deep brain stimulation) so I really want to get that done today, too!

I already have a script for the JustGiving video (it’s the story that I have written to go on the campaign page), so I quickly film myself reading the script, and then take my camera and tripod out into the street so that I can film myself walking.

I write the script for my vlog whilst downloading the JustGiving and walking footage onto my MacBook, and then film my vlog (with quite a large number of retakes – my voice is still sounding pretty rubbish – indistinct and slurred).

Buy the time my wife gets home from work, I have edited the JustGiving video and my vlog, uploaded them both to my YouTube channel and published them – the walking video (which is very straightforward) is a job for tomorrow.

After dinner, I post links to my vlog on Facebook, Twitter, Instagram and half a dozen online Parkinson’s forums that I’m subscribed to, and sit and wait for the donations to come rolling in…

I’m determined to write the story for my JustGiving campaign today, so I spend the morning sitting on the sofa writing it.  I send a copy to our friend (for whom we are trying to raise funds) for her approval, and am extremely glad that she’s happy with it.

My car is going for its MOT today, so this afternoon I drive to the garage (Duff Morgan) on the outskirts of Norwich, and sit in the waiting room whilst they check the car over.  Happily, it passes without needing any remedial work, so that’s out of the way for the next 12 months.

I have a few messages on social media that I need to respond to, so that takes up quite a lot of my morning.  Then I have a couple of letters to write to Norman Lamb (my MP) about my intention to apply for medicinal cannabis.  He messaged me last week to give me his support in my application, and offered to give me an official letter if I wanted to draft one for him to review and sign – so I draft a letter from Norman to my consultant neurologist at the Norfolk and Norwich Hospital, and email it to his assistant for review and signature.  I also wanted to write to him about a couple of issues that will affect my application, and which I want him to question the Home Secretary/Home Office about, so I craft a substantial email with all of the relevant information in it, and send it to him.

I receive a phone call from East Bilney Coachworks (the bunch of cowboys that performed a bodywork repair on my car) about the state of the paintwork and they offer to rectify it (again!  This will be the third time they have had my car back).  We disagree over the provision of a courtesy car whilst my car is with them, so I decide to call my insurance company and let them deal with it.  After over an hour and a half of being passed from department to department and being put on hold, my call gets disconnected.  Very frustrating, and I decide to try again tomorrow.

I have an appointment to have my ears syringed this morning, so after PopMaster I get in my car and drive to my doctor’s surgery in Aldborough.  Ten minutes after arriving, it’s all done and I can hear again!  I was really struggling to hold simple conversation before, so it’s a real relief – it should also help my balance (which hasn’t been great recently).

I book my car in for it’s annual MOT test, and then call the paintshop that performed a bodywork repair (four years ago) that has (so far) been back twice for remedial work – it’s still not right, and is going to require returning for a third time.   I’m not happy, and the manager of the paintshop knows it – he promises to call me back this afternoon or tomorrow morning.

I cross two items off my “To Do” list!

I achieve two things today.  The first one is a “To Do” list – something that I’ve been trying to accomplish for a number of days now.  The second one is that I manage to cross the top item off the list – it’s time to change energy providers because our fixed price tariff for electricity expires in under a month.  So, I research the best deal using Moneysavingexpert’s Cheap Energy Club, and fill out the necessary application form online.   I get the expected emails to confirm that my application has been received and that the process of changing electricity supplier is now underway.

The rest of the day is spent doing very little, aside from walking the dog.  I’m feeling quite isolated at the moment, although the isolation is of my own making.  My hearing, which has been an issue for some time now, has deteriorated rapidly over the last couple months and I’m having the greatest of difficult in following simple conversation – it’s easier to isolate myself than feel like an idiot, so that’s what I’ve been doing.   I have an appointment with the nurse at my doctor’s surgery tomorrow morning to have my ears syringed, so hopefully that will sort this out!

My wife suggests that I take it easy today, to recover from my busy day yesterday.  I don’t need to be told twice, and so I’m taking it easy for most of the day, while my wife clears up the birthday cake fallout in the kitchen, does the laundry and generally straightens things out in our little cottage.

This afternoon we walk down to the allotment to do some weeding and hoeing, and harvest some spinach, kale, courgettes (zucchini) and raspberries.  We are only down there for an hour, but it exhausts me completely – I expect I’ll be aching for the next couple of days.

We finished watching all 10 seasons of Friends on Netflix the other evening so, just for a change, we spend the evening doing a jigsaw puzzle – it’s been years and years since I did one, and it made a refreshing change from sitting in front of the telly.

It’s our eldest granddaughter’s birthday party today (she turned 3 yesterday), so my wife spends the morning finishing the Frozen themed birthday cake that she has made, while I walk the dog and then loaf about on the sofa.

We drive over to the village hall in Hevingham, and enjoy a chaotic couple of hours.  Scratby Donkeys are there with a couple of ponies (one of them disguised as a unicorn, and used to give rides to a succession of delighted children), a very tame goat and a beautiful owl that had the most amazing orange eyes.

We go back to my wife’s eldest son’s house afterwards for a barbecue, sitting in the garden until well after darkness has fallen.

I sent a Facebook message to my Member of Parliament (Norman Lamb) last week, reminding him who I am (we both appeared on the Victoria Derbyshire show about medicinal cannabis), informing him that I intend to ask my neurologist to apply to the Home Office’s “Expert Panel” for medicinal cannabis on prescription, and asking him to  support this application.

I received a reply from him this afternoon, and he has stated that “I strongly support your position” and has offered to give me an official letter stating that fact.  I’m really pleased, because I think it makes it less likely that my neurologist will simply refuse to make the application.

I don’t think that I have a snowball’s chance in hell of being prescribed medicinal cannabis, because the process (for applying for medicinal cannabis on prescription) put in place by our government is intended to be so complicated and have so many conditions attached to it that nobody will ever actually qualify.

This is why it is so important to make the application – to highlight and publicise the fact that the official process doesn’t work for patients.  Since the government made the headlines by announcing that cannabis would be legalised for medicinal purposes, the general public believe that this is the case.  The sad fact is that, in reality, absolutely nothing has changed for the vast majority of medicinal cannabis patients – all medicinal cannabis patients apart from two little boys (who shamed the government into making their announcement), in fact.

And that was always the intention of this government.

I’m struggling with motivation again – the only thing I’m managing to do without too much trouble is taking the dog out for her walks.  I need to make a “To Do” list because I’m currently failing to do anything at all and there’s quite a lot that I need to do before we go on holiday next month.  I get my notebook out (as I did yesterday, with the same intent) but the page remains blank.

My car has been repaired, so this afternoon my wife drives me to Autowerke in Norwich so that I can collect it.

My wife and I return to Hevingham to complete the construction of our eldest granddaughter’s trampoline, which we started yesterday, and complete it (apart from lacing the safety net to the trampoline frame, which my wife says she will do).  I return to Southrepps to walk the dog and have another sit-down.

My car is going in for some minor repairs today, so first task this morning is to drive to the outskirts of Norwich and deliver the car to Autowerke.   My wife lends me her car for the day, so I return to Southrepps where I finish my (lukewarm) cups of tea and take the dog for her morning walk.

I do little else until the afternoon, when I walk the dog (again), have a tidy-up in the kitchen and then run the vacuum around downstairs.   Late afternoon, my wife calls to ask me to go over to Hevingham (to her eldest son’s house) to help her construct a 10ft trampoline (our eldest granddaughter’s present for her 3rd birthday this Friday) so that it’s ready for use when she (and the rest of the family) return home from CenterParcs on Friday afternoon.  We almost complete the construction work, but failing light makes us decide to finish it tomorrow.

Home, dogs fed, dinner, Netflix (Friends), a little cannabis and off to bed.

My wife’s two sons, their partners and our two granddaughters are on holiday at CenterParcs in Elveden this week, and we have been invited to join them all for the day.  So, we drop the dogs off in Hevingham (my wife’s eldest son’s neighbour is keeping an eye on them) and drive to Elveden.   We meet up with everyone (including my wife’s ex-husband, whose birthday it is today), have coffees, a snack lunch (including a chocolate birthday cake that my wife made for her ex), an afternoon in the swimming pool complex, and a pizza in Bella Italia (an Italian restaurant within the CenterParcs complex) before wending our weary way home (picking the dogs up on the way).

When we get back to Southrepps I have a video call from my son, who is in a departure lounge in Kuala Lumpur airport on his way back to Melbourne from Nepal and Tibet.   He has been out of touch for quite a while due to a distinct lack of phone service and Wi-Fi, and it’s good to have a chat and catch up.

I do very little today because I’m feeling spectacularly unmotivated.  The postman brings me more paperwork concerning my mother’s estate, so I sit on the sofa and read through it to see what needs to be done next.  I need to send more documents (identification) for one of my brothers, so I send him a text message so that he can dig out something for me to send.

My car is approaching its annual MOT test, and also has a couple of minor defects that need looking at, so I call Autowerke and get it booked in for Wednesday.

We are looking after my wife’s youngest son’s two dogs this week (while they are away at CenterParcs) so my wife returns home with them, and chaos ensues in our little cottage.  We take all of the dogs for a run around the  field by the village hall before we sit down to have dinner – hopefully they will settle down a bit now…

I spend the morning catching up on stuff that I usually do on Friday evening or Saturday morning – posting links to my latest vlog on Facebook, Twitter, Instagram and a number of online Parkinson’s Disease forums.

I’m not feeling much like doing much, but this afternoon my wife suggests a trip out to Cromer – principally to get some bits and pieces from Lidl.  So we drive to Lidl and do some shopping, but we also park up in the middle of town and have a little wander around the shops before they close.

I spend most of my day helping our friend (the one suffering with Crohn’s Disease and the aftermath of bowel cancer) to prepare her medicinal oil by mixing it with olive oil and sunflower lecithin so that it is ready to be used.

 She has only been taking the oil for 8 days, but she looks so much better already and she has her symptoms of Crohn’s Disease almost completely under control (which is more than the prescription meds were doing).  She’s going to see her consultant at the hospital next Wednesday, so it will be interesting (to say the least) to see what they make of her progress.

I fit my Friday routine around an afternoon appointment with my doctor today, so I am keen to get as far as I possibly can with my weekly vlog before I have to leave the house to drive over to Aldborough Surgery.  I research my chosen subject (infrared light therapy for Parkinson’s and Alzheimer’s) and write a script before I have to go.

I originally made the appointment for the purpose of requesting that my doctor apply to the Home Office’s Expert Panel for medicinal cannabis on prescription, but found out he wasn’t on the British Medical Council’s list of specialists (which is a requirement), so I decided to keep the appointment to discuss his reasons for refusing to prescribe exenatide to me, and also to find out the reason for my deteriorating hearing.  I recently saw my neurologist at the Norfolk and Norwich Hospital, and persuaded him to write to my doctor to request that he prescribe exenatide to me, so it’ll be interesting to see if he has changed his mind again (he offered to prescribe this drug to me “off label” if my consultant said it could be “worth a try”, so I got my neurologist in London to write to him, whereupon he changed his mind without offering me any explanation).  It transpires that he wanted to help me out, but the North Norfolk Prescription Service told him that he want allowed to, because there isn’t sufficient evidence that it’s effective for Parkinson’s – he has written to both neurologists telling them that he was unable to prescribe it, and suggesting that they could prescribe it to me instead.  I have an appointment with my Norfolk neurologist next month, so I’ll quiz him about this then.  My doctor checked my ears out, and it would seem that I need them syringing, so I make an appointment for ten days time.  I tell my doctor (out of courtesy) that I intend to ask my (Norfolk) neurologist to apply to the Expert Panel (because he is on the list of specialists) for medicinal cannabis on prescription, and he wishes me good luck!

Another day of lazing around.   My muscles have recovered from last weekend and I no longer wince when I move, but I just don’t feel inclined to do anything.  I spend the day researching online fundraising websites, decide on JustGiving, and setup an account.

I want to create a campaign to raise money for a friend who is embarking upon a cannabis oil treatment for her Crohn’s Disease/bowel cancer, but the last time I tried to do so (on GoFundMe) my campaign was suspended because it involved an illegal drug.  This time I’m careful not to mention the treatment that she’s having, and the campaign is to raise funds for “other expenses” rather than the treatment (which she and her husband are now funding by drawing cash against a credit card).  Hopefully this will be allowed!

I have a day of doing almost nothing.  I have absolutely no drive to do anything.  The dog drags me out for her walks, of course – I would never deny her her walks, it’s not her fault that I feel this way.  I sit on the sofa in the lounge, catch up on the news by reading The Metro online, and research float switches (on eBay) for the bilge pump on our boat.   I end up by getting myself stressed over the boat – imagining that the existing float switch had failed and that the boat was sinking – so, I get in the car and drive over to Wayford Bridge to check on it.  Everything is okay, the bilge pump has been operating as it should, the bilges are virtually dry, and I have been worrying for nothing.

I clear up my mess in the kitchen and vacuum downstairs before my wife gets home.  I’m not drinking any alcohol until we go on our holiday in October – I could do with losing a bit of weight, and abstaining from the demon drink seems as good a way as any to achieve this.  Of course, I will also be cutting out as much sugar from my diet as possible.