Month: January 2019

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!