Month: December 2018

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!