Month: May 2019

I have a speech therapy appointment at the community hospital in Norwich today, so I gulp down a mug of tea and  take the dog for an early walk before leaving the house to drive to hospital.  My voice is clear and strong this morning, and the speech therapist remarks upon it.  I am given some exercises to improve my articulation and enunciation, and promised some further speech therapy appointments, so that’s good!

I’m feeling exhausted by the time I get back to Southrepps, which isn’t entirely unexpected, so I take it very easy for the rest of the day.   I make up some more thiamine capsules and run the vacuum cleaner around downstairs, but the rest of the time is spent sitting on the sofa in the lounge catching up on my blog!

I’m going to the NHNN today to have a neurologist (with a special interest in the effects of DBS on speech) have a play around with the settings of my neurostimulator in the hope of alleviating some of my problems – slurred and indistinct speech, biting the inside of my mouth when eating, and muscular tension in my jaw.   I have been waiting for three months for the hospital to get a code from Medtronic to enable the adjustment of certain parameters (not supported by default), and only found out, when the DBS speech therapist returned my call, that they haven’t even applied to Medtronic yet (I was fuming, as you can imagine).  Anyway, the neurologist in question thought that it would be worthwhile having a shake-down of my settings in any case, just to see if they could improve things for me, hence the short-notice appointment.  

So I leave the house just before 10am to catch the train from Gunton Station, arriving at the hospital at 1.20pm.  The first person that I see is the DBS speech therapist, who performs a benchmark – assessing and recording my voice on arrival, so that it can be compared with my voice after they have adjusted my device.  

A long session with the neurologist is next.  We discuss my current settings,  what is good and what is bad about them, and then he starts to make changes based upon my existing settings.  I wish I could say that this was a scientific process but, be in no doubt, this is very much a process of trial and error.   He makes an adjustment, then asks me to read out loud from a cue-card, and then asks me if I think my  speech is better or worse than before.  After about 45 minutes of this, I am passed back to the DBS speech therapist, and he compares my voice with the benchmark.  We all agree that it is an improvement (albeit at the expense of some tremor control), and then the neurologist makes some more (trial and error) adjustments.  Once the neurologist is satisfied that he had the best possible compromise between tremor and speech, I am assessed (again) by the DBS speech therapist. 

I feel that some improvement has been made today, but it remains to be seen if this improvement will be sustained once the new settings have had a couple of weeks to “soak in”. 

I leave the hospital with instructions to email the speech therapist in a week or two to let him know how I am getting on.   In the meantime, the neurologist has promised to request the code from Medtronic so that we can try more settings in the future (if required).  

As is usual, following a visit to the hospital, I grab a bite to eat in a posh London restaurant (McDonald’s) and then head off to the blues bar, where I meet up with an old friend of mine for a couple of beers and some live music to kill the time until my train back to Norfolk.

I’m extremely tired from our busy weekend (even though much of it was spent just sitting in the car) so I spend most of the day recovering.  

I received a phone call from the DBS speech therapist (returning my call) and was disappointed (to put it mildly –  enraged might be more accurate) to find out that he hadn’t even applied to Medtronic (the manufacturer of my neurostimulator) to get the code that they need in order to program my device more effectively.  Given that I have been waiting for three months for them to do this, you can understand how I might be just a little upset about it!  I spoke with one of the neurologists on the DBS team, and he said that they would try adjusting my settings in advance of receiving the required code.   So, tomorrow I’m going to travel to the NHNN in London to spend the afternoon with the DBS speech therapist and a neurologist in the hope of alleviating some of the issues that I have been suffering.  

I also received a call from the physiotherapist at North Walsham cottage hospital, offering me some more sessions on the motorised exercise bike – better late than never!

Malt whisky did the trick!  My wife’s father finished the walk in 43 hours and 42 minutes, crossing the finish line in Hexham at 5.42am.  What an achievement!  (I still think he’s mad, though). We all cheer and clap as the final walkers cross the line just a few minutes before the 10am deadline, and then we drive to the cottage in Nenthead that my wife’s parents have rented, for coffee and a bite to eat.  My wife and I leave Nenthead at lunchtime to drive back home to Norfolk, stopping off in Chesterfield to visit my wife’s grandmother, who is delighted to see us.  

We arrive back in Southrepps shortly before 10pm, unload the car, quaff a bottle of Hobgoblin each and then get off to bed.

My wife and I, my wife’s mother and younger brother spend the day shadowing my wife’s father on his 100 mile walk.   It’s blowing a gale and it has been raining since yesterday afternoon, so he’s had a difficult night of it.  I’m glad to be in the car!

My wife and her brother take the dogs (our black Labrador and their parents’ Collie) and walk with their father for a little while (at Killhope Mine) – my mother-in-law and I sit and wait in the warmth and dry of the car.

This evening we eat at The Allenheads Inn, before driving to the Allenheads checkpoint, half a mile or so up the road, to offer our ongoing support to my wife’s father, who  seems a lot happier than he was earlier in the day.   We buy a large shot of Glenmorangie from the pub (for my wife’s dad) and deliver it to the next checkpoint (Allendale Town, which he should reach around midnight tonight) – hopefully it’ll spur him on to the finish. 

The Long Distance Walkers Association 100 mile challenge walk departs from  Hexham at 10am, so my wife and I are up and having breakfast at 7.30am, and then we drive to Hexham where we meet up with her parents and younger brother.   We see her father off (he’s walking 100 miles in the next 48 hours, with only brief stops for  food and drink) and then my wife and I, her mother and her younger brother spend some time sitting in the sunshine outside Hexham Abbey, people-watching. 

We briefly meet up with my wife’s dad at the third checkpoint of the day (Haltwhistle) – just to cheer him on, and arrange to meet him for a quick half this evening in The Cumberland Inn in Alston where he will be passing on his way to the fifth checkpoint of the walk. 

This evening, my wife and I met with her mother and brother for a couple of pints and a bar meal in The Angel Inn in Alston, before walking down the hill to The Cumberland for a couple more pints.  My wife’s father  comes in (briefly), downs a swift half of bitter and continues on his way.

We make arrangements (with my wife’s mother and younger brother) for the Sunday, and then my wife and I disappear off to our accommodation to get a (relatively) early night.

We are driving to Cumbria this afternoon for a few days, supporting my wife’s father who is doing a 100 mile walk this weekend. My wife disappears off to work for a couple of hours this morning, so I spend the time publishing my weekly vlog and posting links to it on Facebook and a number of Parkinson’s Disease online forums to which I am subscribed. 

My wife arrives back home late morning, and we hastily pack bags, load her car and depart for Cumbria (we’re going there to support my wife’s father, who is walking 100 miles with the Long Distance Walkers Association).   The roads are incredibly busy, and we don’t arrive at our accommodation (in Alston) until after 9pm.  We drop our bags off and then head over to Nenthead (where my wife’s parents and younger brother are staying) where we have a drink or two and  make arrangements to meet up in the morning.

My wife and I are travelling to Cumbria tomorrow to support her dad  (who is a member of the Long Distance Walkers Association, and is doing a 100 mile walk this weekend) so I am doing my weekly vlog today, instead. 

I’m still feeling unmotivated, and so I decide to make that the subject of this week’s video (because it’s the easy option, and without an easy option I might not motivate myself at all).   I kick myself up the backside and get cracking with writing a script.  I have the usual struggle with my voice when filming myself, but manage to do so without too many retakes.  

I upload my finished video to my YouTube channel just as my wife gets in from work.  I will publish it tomorrow morning before we leave for Cumbria.

 I make up some more thiamine capsules before taking the dog for her morning constitutional, and then drive over to my wife’s workshop in Hevingham to continue with her stocktake.  I spend a couple of hours counting buttons and spools of thread, and then head back to Southrepps.

I take the dog for another walk, but fail to propel myself in the direction of the allotment, so it looks like it’ll be next week before I do anything about mowing the grass (my wife and I are going to Cumbria for a long weekend, to cheer her dad on – he’s a member of the Long Distance Walkers Association, and he’s walking 100 miles non-stop this weekend). 

My wife’s younger brother comes for dinner tonight, so we have a great evening of food, conversation, wine (my wife and her brother) and Hobgoblin (me).  

 I have committed to start a stocktake on my wife’s soft furnishings business so, after drinking tea and nutriblast and walking the dog, I gather a few things together and set off for Hevingham.  I spend a couple of hours counting spools of velcro, curtain hooks and other sundries before calling it a day.  I haven’t done very much, but at least it’s better than nothing. 

I get back to Southrepps to be  greeted enthusiastically by the dog (who is used to me being at home).  I take her for another walk and drop by the allotment to water the vegetable plants.  I really should mow the grass, but perhaps I’ll manage that tomorrow.  

The morning is spent trying to get myself to do stuff that I need to do – order some glycine so I can see if it helps with my mood and motivation, and chase up the DBS team speech therapist about reviewing my settings.  I call the hospital in London – the DBS team’s speech therapist isn’t there until Wednesday, so I leave another message for him to call me.  I find some glycine on eBay and order it.  

I force myself to go to the allotment this afternoon, and wish that I hadn’t  – recent rainfall followed by a couple of sunny days, and the place looks like it’s being taken over by triffids.   I plant out some more kale seedlings, water the courgette (zucchini) and pumpkin plants, and then spend 10 minutes hacking down nettles, thistles and various other large weeds.  I return home, exhausted by less than half an hour’s exertion, and disheartened by the weeds that seem to be taking over in spite of my efforts.

I have a fairly miserable day – my wife takes the dog for her walks (relieving me of any responsibility) and then busies herself with housework, whilst I vegetate on the sofa in the lounge.  I try to motivate myself to go down to the allotment and do some weeding, but I’m really struggling to get myself to do the simplest thing at the moment.  The only time that I venture outside the house is to put some rubbish in the bin outside our back door.  I do try to make myself useful by setting up some stocktaking software for my wife’s soft furnishings business, and I plan to go over to her workshop in Hevingham on Tuesday to make a start on her stocktake – it remains to be seen whether or not I’ll manage to do so!

I reply to a few emails and messages on social media, and order a couple of items on eBay (a screen protector and carrying case for my new Samsung tablet), and then manage to prise the vacuum cleaner from my wife’s hands so that I can vacuum downstairs (and make myself feel a little less useless). 

I have the day to myself (my wife is at work again) and I really want to get out of the house and do something.  A lack of motivation is still holding me back, and I spend the entire morning (apart from about 15 minutes that I spent walking the dog) sitting on my backside on the sofa in the lounge. 

This afternoon I wander down to the allotment (with dog in tow), water the pumpkin and courgette (zucchini) plants, harvest a bag of spinach (for our daily nutriblasts) and some rhubarb (for our neighbour).  I could really do with spending a couple of hours mowing the grass and weeding the vegetable beds, but I just don’t have the energy (or the inclination) to do so at the moment.  I drop the rhubarb off at our neighbours house on my way home, and stop for a cup of tea and a chat. 

My wife’s youngest brother and his daughter drop in on us this evening, bringing my birthday presents (beer and whisky – they know me so well!) and stopping for a little while for tea and conversation.   When our visitors depart, my wife and I watch the Netflix documentary about medicinal cannabis, called Weed The People – recommended viewing!

I’m still not very motivated, but I’m determined to produce my vlog this week.  A very good friend of mine suggested that he’d like to know more about how Parkinson’s Disease is affecting me at the moment, so that’s what I decide to do.  It’s a soft option, really, because it doesn’t require me to do any research – but then that’s exactly what I need right now. 

I write a script (which takes me much longer than I anticipated), film myself (which is achieved with less retakes than has become the norm just lately), edit it (without too many problems), upload it to my YouTube channel and publish it (just as my wife arrives home from work). 

My wife is pleased that I have managed to produce a vlog this week (she was surprised when I failed to do so last week), and she immediately watches my video (and offers her approval, which is very important to me).  

I have a deliciously tender sirloin steak for dinner, and then we chill out in front of the telly and watch Line Of Duty on Netflix.

My birthday present from my wife (a Samsung Galaxy tablet to replace my ancient iPad) arrives this morning, so today is largely spent downloading apps, configuring it to receive email from my accounts and generally setting it up so that it feels familiar.  Having said that, I’m still using my iPad to do certain stuff (such as writing this blog) until I’m completely happy and familiar with the new tablet. 

Late afternoon, I wander down to the allotment to plant out a pumpkin seedling that is showing signs of being pot-bound, and forget to harvest some spinach while I’m at it!  On my may back home, I join my neighbour for a post-birthday pint of Abbot Ale in The Vernon Arms. 

I’m feeling anxious (for no obvious reason) this evening, so self-medicate with some cannabis (which helps a great deal with the anxiety, and also helps me get off to sleep).

It’s my 58th birthday today, and my wife and I celebrate by taking our two granddaughters out to a dinosaur themed adventure park in nearby Lenwade.  I’m not feeling much like doing anything (again) but I force myself to participate, and I do end up having an enjoyable time, and the kids really have a great day. 

It’s almost 6pm by the time grandchildren have been returned to their parents and we return to Southrepps.  My wife has bought us a ready meal curry, which we have before going to The Vernon Arms for a pint of Abbot Ale or three (well, four, actually) with my wife’s parents and younger brother. We end the evening by returning to our cottage for copious amounts of a very chocolatey birthday cake!

I feel a little better than I have felt lately (motivation-wise).  Perhaps the current spell of warm, sunny weather is having an effect?  I actually enjoy today’s dog walks, and I also tend to the sickly-looking seedlings that I re-potted last week (I really don’t have very green fingers!).   I make some more thiamine capsules for the week ahead, and sort out the rhubarb that my daughter and I picked on Sunday – far too much for my own use, but I’m sure my wife’s sons will take some off our hands!

It’s the eve of my birthday, and my wife and I are joined by her sons, their partners, our grandchildren and her ex-husband for fish and chips on Walcott seafront.

Unmotivated is the word of the moment – I have absolutely no drive to do anything whatsoever, and I spend the day doing the absolute bare minimum.  The dog gets her walks, of course, but I could really do with doing some work up at the allotment, and I can’t persuade my legs to walk in that direction. 

I sit on the sofa in the lounge with my Macbook and iPad, and trawl through auctions on eBay looking for a replacement tablet for my ancient iPad (which no longer runs my Sonos or online banking apps).   I successfully bid on a Samsung tablet, so that should arrive (and occupy a fair amount of time) later this week.  

My wife’s family (parents, brothers, partners, children) join my wife, my daughter and I for Sunday lunch in The Vernon Arms today.  It’s a long-winded feast, punctuated with Abbot ale and ending up with after-dinner coffees back at our cottage.   My daughter and I walk up to the allotment and harvest as much rhubarb as we can physically manage to carry.  We drop some off at my neighbours house, my daughter takes a few stalks home with her (when she departs for York, late afternoon) and the remainder is divided between my wife’s parents, her youngest brother and us. 

I’m shattered by the time everyone disappears home and we have the house to ourselves again, so I lounge around on the sofa while my wife clears away the debris and puts the dishwasher on.

Today is our youngest granddaughter’s 2nd birthday, so this morning is spent getting ready for the birthday party (this afternoon).   Just after lunchtime my wife, my daughter and I pile into my wife’s car, and she drives us over to Hevingham (along with a number of garden chairs, birthday presents for the birthday girl, the birthday cake that my wife made, and a selection of alcoholic beverages for adult consumption!).

Fortunately, the weather was kind and the afternoon was spent in the garden, eating, drinking and chatting to family members (who had turned out in force), and being entertained by our granddaughters (who were having an absolute blast).   

I am completely without motivation.  I start to research a topic for my weekly vlog but, after half an hour or so, I simply give up.  I feel as though I ought to record some sort of video message giving my reasons for not producing a vlog, but I can’t motivate myself to do that, either.  I have managed (so far) to research, script, film, edit and publish a video every single week for the last 126 weeks, and I’m disappointed with myself for falling at the 127th hurdle – but hey! No sense in beating myself up over it, it’s just the way it is. 

I walk the dog this morning, and again this afternoon, but the rest of the day is spent sitting on my backside on the sofa in the lounge trying (and failing) to get myself to do something (anything!).

My daughter is coming to stay for the weekend, so I need to stick a rocket up my backside – I don’t want her to see me like this.  I vacuum downstairs when my wife arrives home from work, and that feels like a major achievement.

It’s my final speech therapy group today, so I’m out of bed promptly, tea supped, dog walked and out of the house just after 9am.  I call into my doctor’s surgery in Aldborough on the way back to Southrepps, to pick up my prescription, and I’m back home sitting on the sofa by 12.30pm.

All of the effort involved in projecting my voice and enunciating clearly leaves me feeling totally exhausted, so I don’t do very much this afternoon (other than search eBay for a replacement for my iPhone 5C, which my wife has said she’d like to buy me for my birthday).  I take the dog for her afternoon walk, and then drop in for a cup of tea and a chat with my neighbour.

I’m feeling a bit low today – no motivation to do anything (other than to sit on my backside), and I’m not bothered.  I bother to take the dog for a walk (because she nags me), but, other than that, I do absolutely nothing this morning.  I notice a fair amount of muscular tension in my jaw just lately (it’s been getting more noticeable over the last 4 or 5 days) and I wonder if it’s anything to do with my neurostimulator settings that I changed a week or so ago (I switched over from group “B” settings to group “A” settings because I was getting a lot of tremor breaking through on my left hand side).  I change back to group “B” settings (2.60 volts on the left side, 2.75 volts on the right) and I’ll see if anything changes over the next few days. 

My wife arrives home mid-afternoon with our eldest granddaughter in tow, and they busy themselves with baking cakes for our youngest granddaughter’s birthday party this weekend.  I sit on the sofa in the lounge as chaos reigns around me!

Motivation is pretty low at the moment, so I’m pleased that I manage to spend an hour or so re-potting seedlings that were getting a little overcrowded.  I think that the kale seedlings that I planted out at the allotment last week have all perished (but I kind of guessed they weren’t going to survive) so I plant some more seeds and plan to grow them into slightly bigger and stronger plants before putting them in the ground this time. 

I wander round to our neighbour’s house after taking the dog for her afternoon walk, and we drink tea, chat for a while, drink red wine and chat for a while longer.  I’m feeling quite fatigued by the time I return home, and my speech has become slurred (but not as a result of the red wine – honest!).

I sold some empty Calor gas cylinders over the weekend, and they are being collected today, so I move them next to the back gate (ready for collection) and, in doing so, manage to strain my back – so the rest of the day is spent hobbling around in a fair amount of pain.  

I make up a few days worth of thiamine capsules, strain some kefir and then take the dog for a short hobble around the field by the village hall.   I bump into one of my neighbours (a fellow dog walker) who tells me how pleased he is that he has now sold a large sofa that I advertised on Gumtree for him – in fact he is so pleased that he insists on buying me a pint of Abbot Ale in The Vernon Arms.  It’d be rude to refuse…

I don’t feel much like doing anything today, so spend most of the day sitting on the sofa in the lounge trying (and failing) to buy travel insurance, book a hire car, and book airport parking for our holiday in October, while my wife dashes around cleaning and tidying and doing our laundry. 

I succeed in booking an hotel for us to stay in the night before our flight, only to read the reviews on TripAdvisor (after I had booked it – big mistake!) which said the place was dirty and smelly, so now I need to cancel the booking and find something nicer.

We are babysitting our youngest granddaughter today so, after the usual mugs of tea/coffee and dog walk, we head off to Hevingham to collect our charge.  We spend much of the day shopping for the ingredients for a birthday cake (my wife has committed to making a “baby shark” themed cake for our youngest granddaughter’s 2nd birthday next week) and don’t get back to Southrepps until late afternoon.  

My wife takes our granddaughter to the local playground while I take the dog for a walk and visit the allotment to pick some more spinach.  By the time we have had something to eat, and returned our granddaughter to her parents, it’s late and dark – we watch an episode of Line Of Duty on Netflix and then get off to bed.

I lack “get up and go” – I’d much rather “sit here and stop”.  I select a subject for this week’s vlog, and manage to summon up sufficient enthusiasm to research and write a script, although it takes me ages!  It’s late afternoon before I’m ready to film myself, and there follows many takes (and swear words).  I get a move on with editing the raw footage, and I’m just putting the final touches to my video when my wife arrives home from work, so I’m not as far behind schedule as I thought I would be.

I’m dropping my wife off at the garage to pick up her car (on my way to my speech therapy group) today, so I gulp down my tea and take the dog for an early walk before leaving the house (just before 9am) to drive to Norwich Community Hospital (via the garage in Hevingham).  I fill my car with petrol while I’m in Norwich, attend my speech therapy group (which addresses swallowing issues, this week), and I’m back home in Southrepps just after midday. 

It’s the local council elections today, so I make sure that I vote – if you don’t vote, you can’t complain about the outcome!

I give myself a haircut and eyebrow trim (because I’m feeling scruffy), and take the dog for her afternoon walk, where we encounter a couple of fellow dog-walkers (and their dogs) and our dog has a fine time romping around with them.

I package up the eBay item that I sold at the weekend, ready for collection by the courier that I booked yesterday, and then spend the entire day sitting in the house, waiting for them to collect it.  I dash out for a very quick dog walk just before PopMaster but, other than that, I dare not leave the house (because the courier would be bound to turn up while I was out).  

I’m still waiting when my wife arrives home from work at 7.30pm, and we are sat at the dining table eating our evening meal when there’s a knock at the door.   

After dinner I walk up to the allotment to water the seedlings that I planted out yesterday, while my wife takes the dog for a decent walk.  

The morning is spent doing some admin – preparing an invoice for a customer of my wife’s soft furnishings business, and then booking a courier to collect an item that I sold on eBay over the weekend. 

This afternoon, I take a tray of seedlings down to the allotment, prepare the ground, and them plant out some courgettes (zucchini) and kale seedlings.  Considering the amount of rain that we have had over the last week, the ground was extremely hard – I water the seedlings in and keep my fingers crossed that they will survive. I do a little bit of weeding while I’m at it, and manage to overdo things again – I stagger back home for a rest before taking the dog for her afternoon walk.