Month: February 2019

I am feeling very sad today – Mark Hollis, the lead singer and songwriter of 80s group, Talk Talk, has died at the age of just 64.   It seems strange to be grieving for someone that I have never even met, but his music was the soundtrack to my life through my 20s and 30s and is still regularly played at home.  I find myself reading all of the comments that people have posted on The Guardian article announcing his passing, and I’m certainly not alone in feeling the way that I do.

I try to continue with learning how to use the ClickUp project management software that I want to use for my wife’s soft furnishings business, but my heart really isn’t in it today.  I play Mark Hollis tunes on the sound system, immersing myself in the commercial sounds of The Colour Of Spring and the critically acclaimed (but commercially unsuccessful) Spirit Of Eden and Laughing Stock, and ending with his solo album – beautifully melancholy, yet somehow uplifting.  RIP Mark Hollis – you live on through your incredible music.

Today is largely spent on trying to get my head around some project management software.   I’m sure that the use interface is very intuitive, but I think that I have far less intuition than I used to have.   I’m very aware that I am physically much slower than I used to be, and I think that my thought processes are similarly sluggish as Parkinson’s Disease proceeds to trash my brain.  It has certainly affected my fluidity of speech – in my pre-Parkinson’s days I would have been able to present my videos without having to have a script, but there’s absolutely no way that I could do so now.

I do manage to get a grip on the terminology used in the online documentation for the ClickUp project management package, but I had hoped to make more progress than I have!

I continue my online search for a simple project management software package for my wife’s soft furnishings business, and find one that appears to fit the bill (ClickUp).  I sign up for a free account and then spend some time playing with the software to familiarise myself with it.  I resolve to search out online documentation tomorrow, when I have the house to myself and can browse uninterrupted.

I order myself some thiamine hydrochloride online (I intend to try following the protocol that I covered in this week’s vlog, because it seems straightforward and relatively risk-free) and then fill the log basket, clean the glass in the woodburner’s doors and light the fire (because it’s feeling a little chilly this evening, in spite of the beautiful, sunny and mild day we have had).

My wife is feeling the pressure of work again, and so decides to go to work today.  While I await her return, I spend my time looking for some suitable (free) project management software so that we can plan her workload more effectively.  It’s a slow process because there are so many packages that appear to offer what we require, but are simply too complicated for a novice user (my wife) to pick up and use effectively without a steep learning curve – we need simple software!

We are babysitting both of our granddaughters tonight whilst their parents attend an event in Aylsham, so my wife is home at a reasonable hour, and we have an early dinner before setting off to Hevingham for the evening.

I drive to North Walsham first thing this morning to do some grocery shopping in Lidl (one less thing for my wife to worry about).

I’m back home again just after 10am, so take the dog for her morning walk, listen to PopMaster and then get stuck into researching and scripting my weekly vlog.

I change my neurostimulator settings to group “B” (because I think that my voice is slightly clearer on these settings) and film myself without too much trouble.  I switch back to group “A” settings when I start editing my video (slightly less tremor with group “A”) and manage to finish the edit, create the video and upload it to my YouTube channel by the time my wife gets in from work – I publish it after we have eaten dinner.

I resume my attempt to write the letter (on behalf of my step-daughter-in-law) that I started researching yesterday – I start writing it but, in doing so, raise more questions that I need my step-daughter-in-law to answer.  Task shelved until I have some answers!

My neighbour calls around to ask me to help him to fit a blinds to a Velux window, so the following 2 or 3 hours are spent carrying out this simple 10 minute job (nothing is ever as simple as it looks!).  My neighbour persuades me to join him for a pint of Abbot Ale in the Vernon Arms as a thank you for my help (I wasn’t really much help, but who am I to argue?).

I am writing a letter for my step-daughter-in-law today, regarding a car that she purchased from a dealer that turned out to have finance outstanding on it.  I want to ensure that what I write is factually correct, so end up spending most of the day researching (and trying to understand) the Consumer Rights Act of 2015.  Inevitably I end up more confused than before I started, and don’t actually make any headway with composing the letter – will try again tomorrow!

Aside from my internet researching, I do the usual dog walks, bringing in logs for the fire, and running the vacuum cleaner around downstairs.  I bung a ready meal in the oven for our evening meal, and my wife and I watch a couple of episodes of Designated Survivor on Netflix before grabbing an early night.

I’m being taken out to lunch by our visiting friends today, so spend some time this morning looking at local pub menus online, trying to choose somewhere decent for us to go.  The choice (after much browsing) is the Vernon Arms, which has excellent food and beer, reasonable prices and the advantage of being extremely local!

We enjoy food and a couple of beers, before retiring to our cottage for cups of tea, and then taking the dogs for a walk around the village hall field.

Once our friends have departed, I bring some logs in from the back garden, light the fire and vacuum downstairs.

I have a whole stack of comments on YouTube that I need to respond to – I seem to have let them pile up over the last couple of weeks, so I spend the morning (and part of the afternoon) clearing the backlog.

I have a bit of a tidy-up in the back garden – the debris from where our delivery of logs was dumped (prior to being stacked against the back wall) is getting trodden into the house every time I fill the log basket, so I sweep it up (and then fill the log basket, without making any mess!).

The dog let’s me know that I’m late taking her for her afternoon walk (so I take her, of course), and then light the fire when we return.

Our friends (who are visiting Norfolk for a few days) are coming to dinner this evening, so this morning my wife and I drive to Lidl in North Walsham to buy food, beer and wine.   My wife knocks up a spaghetti Bolognese, and a Key Lime Pie for dessert, while I split logs, fill the log basket, run the vacuum cleaner around downstairs and then light the fire.

Our friends arrive with their dog (a three year old pointer) and we take her (and our dog) to the field by the village hall to burn off some energy.  We return home as daylight is fading, and have a very enjoyable evening, eating, drinking and chatting (although my voice deteriorates markedly as the evening progresses and I start to get tired).

Some good friends of ours are visiting Norfolk for a few days, so we are expecting them to drop in to see us at some stage this afternoon.   My wife and her two sons are joining her father for a portion of the Winter Poppyline walk that he is doing today, so the two events are almost guaranteed to clash.   This morning and early afternoon are spent cleaning and tidying in preparation for our visitors, and then I drive my wife and her sons over to Sheringham (where they are meeting up with my wife’s father).  I return to Southrepps to find that our friends have arrived (as predicted) and are esconced in the Vernon Arms.  I join them for a pint or two of Abbot Ale and a chat, and then they drive on to find their accommodation near Fakenham.

The walkers arrive back at our cottage just after 8pm, having walked 12 miles (her father, who is made of sterner stuff, has already walked 36 miles and continues walking a further 14 miles!).

I receive a phone call from the DBS speech therapist that I saw at the NHNN yesterday – he tells me that he has discussed my speech problems with his colleagues, and they think that adjusting the “pulse width” of the stimulation that I receive from my neurostimulator could be beneficial.

There is just one problem – the neurostimulator that I have implanted does not have a “pulse width” setting.  I feel my heart sinking, but then he tells me that Medtronic (the company that manufactured my DBS hardware) can provide my clinicians with a code that will enable this setting on my neurostimulator, so that’s a result!

Apparently it takes one to two months for them to get this code (which seems ridiculous to me), so I won’t be having any adjustments just yet, and I was really hoping that I’d be returning to the NHNN sooner rather than later…

I’m off to the NHNN today for an appointment with my London neurologist, so my wife drops the dog off at her youngest son’s house in Hevingham first thing this morning and we head off to Gunton station to catch the 10.07am train to London.

We arrive in plenty of time, intending to go to see Martha Orbach’s “White Out” exhibition prior to my appointment, but ending up sweaty and exhausted after trying to find it, only to realise that we were in the wrong building!  Okay, appointment first and then exhibition…

I get the customary 15 minute audience with my neurologist who, whilst being very personable and vastly more educated than I, doesn’t really address any of the issues that I’m currently experiencing with my DBS.  She does, however, get me an audience with one of the speech therapists who reckons that my speech problems are due to stimulation rather than disease progression, which is a major comfort to me.  He says that he will schedule an entire afternoon appointment with himself, a DBS nurse and a neurologist to give my DBS programming a thorough shakedown to see if they can find settings that don’t make me sound as if I have recently drunk a bottle of whisky.  This is what I was hoping was going to happen today, and I had already tried to book an appointment with the DBS nurse for today but, as is usual (unfortunately), the patient voice isn’t given due consideration, so I was refused an appointment on the (incorrect) basis that I was seeing my neurologist, and if any adjustments were deemed necessary then she would make them.  I’m sure that it is of little consequence to them, but another appointment means another day that my wife has to take off work, and another £100 in travelling expenses.

After leaving the NHNN we catch the tube to Warren Street and get to see Martha’s exhibition, which is brilliant – I recognise myself in some of the images, and some of the words that she used to accompany her artwork were mine also, so I felt extremely honoured.

We head off to the Blues Bar (via McDonalds) to listen to some live music and sup a beer or three whilst killing time until our train home.

Valentine’s Day arrives a day early in the Frizell household, because tomorrow is going to be spent travelling to London and back for an appointment with my neurologist.  So, while my wife is busily slaving away in her workshop, I go to North Walsham to do some shopping.  I buy food, bubbly (Seaview – Australian “champagne”), beer (Hobgoblin), flowers (red roses) and chocolates (salted caramel truffles) for consumption this evening.

When I get back to Southrepps, I get the logs in from the back garden, clean the hearth, light the fire, vacuum downstairs and walk the dog before preparing a (ready) meal for my wife and I.

I have a fairly busy day today.  First up is my physiotherapy appointment at North Walsham cottage hospital.  I surprise myself by cycling for almost an hour on the motorised exercise bike – my legs felt weak and tight when I started cycling, and I seriously didn’t expect to manage half an hour, but my muscles loosened up after about 15 minutes.  I certainly wasn’t able to sustain the rate of exercise that I managed last week, but I’m very pleased that I managed that duration.

After my physio, I drop my eBay parcel off with the courier and then drive to Tesco in Sprowston where I buy my wife a gift and card for Valentine’s Day, and fill the fuel tank of my car.

I arrive back in Southrepps mid-afternoon, take the dog for her second walk of the day, fill the log basket and light the fire.

I’m going to finish the job that I started on Saturday this morning – making sure that the prices in my wife’s fabric sample books are all up to date.  I take the dog for her morning walk, guzzle my mugs of tea, listen to PopMaster and then drive over to my wife’s workshop in Hevingham.  I finish updating the fabric prices, and then load all of the sample books into my wife’s car, in preparation for her appointments tomorrow.

It’s mid-afternoon when I arrive back in Southrepps, so I split some logs, fill the log basket and light the fire before taking the dog for her second walk of the day.  I sold another sizeable item on eBay last night, so I book a courier for tomorrow, and get it packaged up and ready to go.

Sunday… A day of rest.  Not.

My wife is in full housework mode today – trying to catch up with all of the tasks that she would have done yesterday (had she not been at work), so I keep my head down and stay out of the way while she rampages around the house like a miniature tornado.

I want to give her car a quick wash (she likes it to be clean for when she visits prospective clients, and she has two or three appointments booked for the coming week) but it has been raining steadily all day.  It eventually stops around mid-afternoon, so I venture outside armed with a bucket of soapy water and give it a quick once-over.  I also split a few logs, fill the log basket and light the fire.

I publish this week’s vlog this morning, and post links to it on Facebook before driving over to Hevingham to give my wife a helping hand.  She is working today so that she can, with a clear conscience, accompany me to my neurologist appointment in London this coming Thursday.  She is a victim of her own success, and is currently in a bit of a panic because of the amount of work she has in the pipeline – her soft furnishings business (of which she is the sole employee) is currently booking work for August!  I’m going to go through all of her fabric sample books to check that the process are up to date (revised price lists arrived through the post last month).  I manage to get about halfway through before having to return to Southrepps to take the dog for her afternoon walk, get the logs in and light the fire.

My day is fragmented by a call from my eldest nephew whilst I’m still writing the script for this week’s vlog, wanting me to accompany him to the Vernon Arms for a swift pint of Abbot Ale.  It’s been a while since I’ve seen him, so I drop everything and we go over the road for a beer.  Whilst we are drinking, my nephew persuades me to join him and his girlfriend to see Pirate Joe and the Foreign Locals at the Butcher Bhoy pub in Norwich this evening.  He leaves me to work on my vlog, which I just about manage to finish by the time he returns to collect me for the evening’s entertainment.  It’s getting on for midnight when I get home, and I decide to leave publishing my video until the morning (which may, or may not, have had something to do with the three pints of Guinness that I had imbibed).

Another day of minimal motivation, and I really struggle to get up off my backside to do anything (and there’s plenty that I could be doing).  The dog gets me out of the house this morning for a quick stumble around the field by the village hall, but it’s trying to rain and I’m glad to get back indoors where it’s warm and dry.

The bulk of my day is spent preparing a submission about my use of medicinal cannabis to the Department of Health and Social Care for their inquiry into medicinal cannabis – not a major task by any stretch of the imagination, but it takes me an inordinate amount of time to get all of my thoughts (and facts) into a document that can be uploaded to the Parliament website.

My afternoon stroll with the dog precedes some kindling and log splitting, and I then light the fire and sit in front of it, awaiting the return of my wife.

I’m really tired today – probably due to my physiotherapy session yesterday.   I’m not interested in doing anything, not even getting the logs in from the back garden so that I can light the fire (I’m feeling the cold, even though it’s nowhere near as chilly as it has been for the last week) – it’s easier to stick a sweater on and heat up some soup, so that’s what I do.  I eventually motivate myself to take the dog for a walk (she insisted!), and I fill the log basket when we return.

I drop in on our neighbour for a chat and a cup of tea, and get persuaded (I’m easily persuaded) to join her and her husband over at the Vernon Arms for an early evening pint of Abbot Ale.

I’m determined to improve my performance at physiotherapy this week – I’m certainly feeling less muscular discomfort than I was last Tuesday.  I aim to cycle (on the motorised exercise bike) for an hour, alternating between 90+ RPM and 100+ RPM.  I do manage to maintain the rate of exercise that I’m aiming for, but my lack of stamina sees me calling it a day after just under 50 minutes.  I do feel, for the first time, that I actually had a workout today, and I’ll try to improve on this at my next appointment.

Back home, I split a few logs, fill the log basket, light the fire, run the vacuum cleaner around downstairs and then vegetate on the sofa in front of the fire for the rest of the afternoon (punctuated by the usual dog walk).

Today I’m doing parcels!  I’m expecting FedEx to collect the parcel for my brother (in Nova Scotia) and I need to package up the item that I sold on eBay last night, and get it sent off to the purchaser.  TNT pick up my brother’s parcel on behalf of FedEx, so that’s out of the way (at long last) – fingers crossed that it arrives intact.  I spend an absolute age researching the cheapest courier service for sending my eBay parcel, eventually settling on ParcelForce – I wrap the parcel in bubblewrap, print off the address label and drop it off at the village post office.  Two parcels dispatched in one day – I’m on a roll!

I spend some time on the regular chores – bringing in the logs for this evening’s fire, lighting the fire (it’s chilly today) and vacuuming downstairs.

The conservatory (the cleaning and tidying of) is the focus of my wife’s attention today, so my focus is on disposing of my unwanted and/or obsolete electronic equipment which seems to take up most of the room out there.  My time is spent photographing said equipment, getting quotes from couriers, and creating eBay listings.   One item (that I thought I might have overpriced) sells almost immediately, which encourages me greatly.  I finally get around to booking a courier and completing all of the necessary customs paperwork for a parcel of goodies which we are sending to my brother in Nova Scotia (as payment in kind for running the website for my wife’s soft furnishings business).

My wife’s ex-husband drops in on us this afternoon with our youngest granddaughter in tow, which is a great excuse to stop what we’re doing and be entertained by her.

Our delivery of logs arrives first thing this morning, so my wife and I barrow them into our back garden from the trailer in the road, and then stack them neatly against the back wall, where they get covered over with a tarpaulin to keep them dry.  My wife fills the log basket for this evening’s fire, and I split a load of kindling for the week ahead.

My wife spends the rest of the day finishing off the grouting in the bathroom, so I spend the rest of the day trying to keep out of her way!   I walk the dog, clean the woodburner, light the fire, vacuum downstairs and then post links to my latest vlog on Twitter and Instagram.

This week’s vlog is about the progression of Parkinson’s Disease – a subject that is close to my heart (and constantly in my thoughts – especially on a Friday, when I lament the deterioration of my voice).  I switch my neurostimulator over to group “B” settings – I’m still uncertain whether my voice is clearer on these settings, but it certainly isn’t any worse.  I also try drinking some lemon and ginger tea, which seems to help a little.

I film myself with only 32 takes (I’m happy if I have less than 40 takes) but I’m very unhappy with my clarity of speech – I think that my voice is so slurred that I sound drunk, even though I’m trying to slow my speech down, project my voice and enunciate carefully (as instructed by my speech therapist).  I have an appointment with my London neurologist in a fortnight, so it’ll be interesting to see if she can improve my speech by adjusting the programming of my DBS…

It’s freezing cold in Southrepps this morning.  The roads are white with frost, and the entire village is shrouded in mist (and remains so all day).  I finally get around to ordering some more logs (there’s less than a week’s worth stashed in the garden), so we can expect delivery this weekend.  I spend some time sorting out our log storage area so that there’s room for the new logs, and fill the log basket for this evening.

I take our neighbour her birthday card and bottle of bubbly (she was out for the day yesterday), drink tea and have a bit of a chin wag, and then we take the dogs for a walk in the mist (you can’t see from one side of the field to the other).  The pain in my legs and back has receded a great deal, so I’m feeling a bit more flexible than of late.