2019-07-23 – A disturbed night.

I had a disturbed night last night, because of the current heatwave (I think) rather than as a result of turning my neurostimulator off at bedtime.  I woke up several times during the night, but was able to get back to sleep relatively easily, so eating some cannabis medicated chocolate brownie before going to bed had the desired effect. 

My physiotherapy appointment was cancelled again today, so I’m resigned to the discontinuity of my treatment – I’ll ask for my treatment to be restarted from the date of my next session (whenever that is!). 

It’s so hot and humid here today that I spend the majority of the day sitting quietly on the sofa in our lounge (windows open to encourage any breeze to cool the house down).

2019-07-22 – Today’s tasks…

Today’s tasks (aside from the usual dog walking) are to order two new batteries for our boat, order some digital scales (for greater accuracy in filling capsules with thiamine, etc.) and make up capsules filled with thiamine for the week ahead.  I negotiate a discount with a battery seller on eBay, and place an order for the boat batteries.  I find some digital scales that will measure with the required accuracy (accurate to 1mg), so I place an order for those.  I make up 70 capsules of thiamine powder (each capsule containing approximately 400mg, so 10 capsules per day give me a daily dose of around 4g).  

My voice is pretty rubbish today (high pitched, slurred and indistinct), so I decide to give my brain the night off.  I vape sufficient cannabis to suppress my tremor, eat some medicated chocolate brownie just before I go to bed, and then turn my neurostimulator off – fingers crossed for a good night’s sleep!

2019-07-21 – Still unmotivated.

I’m still unmotivated (and fatigued) but I need to get out of the house and do stuff, so my wife and I drive over to Wayford Bridge to make sure that our boat is still afloat, and also to measure the batteries (so that I can order replacements with confidence).  All is well, so we then head over to Norfolk Marine in Hoveton to price up some rope (to replace the ropes on the boat, which are disintegrating).  While we are there, we pop into Roy’s garden centre where my wife chooses some trellis for the front garden.  By this time I’m shattered and all I want to do is get back in the car and drive home – which is precisely what we do!

2019-07-20 – The kitchen tap.

I have the day to myself because my wife is working (again).  I have been meaning to take the kitchen tap apart for several days now (it has recently started to drip, which is most annoying, not to mention an expensive waste of water), so today I grab the bull by the horns and dismantle it.   The tap is a ceramic disc type that doesn’t have the traditional rubber washer inside, so I search on YouTube for a video that shows me what I need to do.  It looks childishly simple (which means that even I should be able to do it) and, indeed, that proves to be the case – I take the tap apart, give the component parts a thorough clean and re-assemble it.  Voila!  A kitchen tap that no longer drips!

When my wife gets home from work we go to Lidl in North Walsham to do the weekly grocery shopping.

2019-07-19 – Struggling to motivate myself.

I’m struggling to motivate myself to produce my weekly vlog today.   I almost decide to give it a miss, but then decide to vlog about the fact that I’m so unmotivated that I can’t be bothered to vlog!  Funnily enough, it results in a half decent video, and I have quite a few comments thanking me for putting into words what many people with Parkinson’s Disease experience – I think it is a comfort to find out that you aren’t the only person affected…

This evening my wife and I drive over to Felthorpe to visit my wife’s youngest son, his wife and our youngest granddaughter, where they are camping for a couple of nights to try out a second-hand trailer tent that they purchased recently.   It wasn’t great camping weather (it was chucking it down with rain), but it was a good test of the trailer tent, which survived without letting any rain in.  

2019-07-18 – Marginally more productive.

I have a marginally more productive day than yesterday – I call Yorkshire Bank’s helpline and manage to resolve the problem that I had yesterday (whilst trying to download last year’s statements for my wife’s soft furnishings business).   I don’t actually download all the necessary statements, but at least I now know what I was doing wrong!

I am getting stressed over our boat (again) because I haven’t yet ordered the new batteries that I need.   I forgot to measure the size of the existing batteries when we were last on the boat (two weeks ago), and I know that the existing batteries are very weak and don’t hold their charge very well.  I’ll have to go to Wayford Bridge (where our boat is moored) at the weekend, just to set my mind at ease. 

2019-07-17 – Absolutely zilch.

I’m feeling extremely tired today because of my late night last night (I assume), and I have absolutely zilch in the way of motivation.  I achieve absolutely nothing, although I try (and fail) to download bank statements online for my wife’s soft furnishings business (she needs them to accompany her company accounts when she sends them to her accountant).  I also research prices for new batteries for our boat, but don’t actually purchase them.

2019-07-16 – Less effort required.

I’m supposed to be having an hour of physiotherapy on the motorised exercise bike, but staff shortages have resulted in the cancellation of my appointment this week – yet another break in the continuity of my treatment!  I occupy myself instead by booking a courier for a roll of fabric that my wife’s soft furnishings business needs to send – time absorbing, but a great deal less effort required. 

This evening my wife and I drive to The Waterfront in Norwich, to see Living Colour playing live.  It’s a brilliant gig which we both thoroughly enjoy, although I’m exhausted (again) by the time we get back home to Southrepps (just before midnight). 

2019-07-15 – Medicated chocolate brownies.

The thiamine powder and empty capsules that I ordered last week have now been delivered, so I  fill a week’s worth of capsules (which is about all I feel capable of doing today).  I’m paying the price for my weekend of car cleaning – everything is an effort, and it feels like every muscle in my body is protesting.  This afternoon I decide to make the medicated chocolate brownies (a Jamie Oliver recipe, with an extra special ingredient – cannabis infused coconut oil.  I’ve made them to take at bedtime so that I can switch my neurostimulator off at night (to see if giving my brain a break from constant stimulation will help with my speech issues) but I eat one to gauge the potency of the medication – not bad!!

2019-07-14 – Action replay…

I’m aching all over this morning, from my car cleaning efforts yesterday, so you would think I would have the good sense to take it easy today…. Wrong!!!  My wife and I go to Lidl in North Walsham to do our weekly grocery shopping and, on our return to Southrepps, I decide that it’s a really good idea to wash and polish (and remove all of the tar spots from) her car which (thankfully) isn’t quite as filthy dirty as mine was.  This afternoon is like an action replay of yesterday, culminating in complete and utter exhaustion – my arm muscles are week and painful, and I’m getting painful dystonia in both of my hands.  I think I’m going to be laid-up for the rest of the week after this weekend!

2019-07-13 – In need of a wash.

My car is in desperately in need of a wash and polish, so that’s what I plan to do today.  My son bought me several Autoglym products for my birthday and Father’s Day, and has been gently nagging me to try them out – two birds with one stone, methinks!  I spend the entire day washing, removing tar spots from, and polishing my car.   By the time I’ve finished I can barely stand up because I’m completely exhausted – my car, though, is cleaner and shinier than I’ve ever seen it before.  My wife (who has been at work today) returns just after I have finished my car cleaning, and  prepares our evening meal, which is just as well – I’m certainly not capable of doing anything more today…. 

2019-07-12 – At my neighbours’ house.

I have agreed to sit with our neighbour (who is currently unwell) whilst her husband goes to the cottage hospital in North Walsham for some physiotherapy this afternoon.  This clashes with the production of my weekly vlog, so this morning I hastily write a script and film myself so that I can edit the video while I’m at my neighbours’ house.  At lunchtime I gather up my MacBook, trackpad and Samsung tablet, and wander across the road (looking both ways, obviously!).  I edit the video, make (and drink) several mugs of tea, and keep my neighbour company, by which time her husband returns and relieves me of my duties.  

2019-07-11 – Priorities.

I’m busy ordering stuff online today – I need some more thiamine powder and some capsules (I’ll run out early next week) so getting those ordered is a priority.  Amongst my other priorities is collecting my car from Autowerke this afternoon, when the mechanic calls me to tell me that it’s ready.   My wife collects me from Southrepps and drives me to Norwich, where I am separated from a lump of cash and reunited with my lump of metal. 

2019-07-10 – A disastrous morning…

I have a bit of a disastrous morning…  I have a speech therapy appointment at Norwich Community Hospital so, after taking the dog for her morning walk, I get in my car and drive to Norwich.  My appointment goes smoothly, and we identify some areas (by watching a number of my weekly vlogs) that I can work on to improve my clarity of speech.  When I get into my car to drive home, I wind down the electric windows – with a creak and a twang the cable on the passenger side snaps, and the window is stuck in the open position.  Cursing (liberally), I decide to fill up with petrol and then pay a visit to Autowerke (the garage that does all of the work on my car) which happens to be on my route back to Southrepps.   I fill up at the local Tesco petrol station, and then discover that my car won’t start because the battery is flat.  Luckily I have some jump leads in the car and I manage to persuade a very kind young lady (who was filling up at an adjacent pump) to permit me to jump start my car from hers.  Next stop, Autowerke!  I book the car in for repair, a service and a new battery – it looks like it’s going to be an expensive week.  I leave the car at the garage, and my wife collects me.  

This afternoon we take our two senior granddaughters to the circus at Northrepps, accompanied by my wife’s parents and her niece.  Our granddaughters enjoy the show (in the main) although the 2 year old finds the clown a little frightening – I hope we haven’t scarred her mentally!

2019-07-09 – Clutching at straws.

It’s physiotherapy day, so I drive to the cottage hospital in North Walsham and cycle for just over 45 minutes on the motorised exercise bike.  My other forms of exercise today are the usual dog walks (two of) and making up some more capsules of thiamine – I am nearing the end of my supply of thiamine, so I need to decide whether or not to continue with it (and order some more) because it is quite expensive and I don’t appear to be getting any benefit from it.  In the end I decide to order one more packet on the basis that these things can take several months to make themselves felt (and, probably, I’m clutching at straws ever so slightly). 

I drop in on our neighbour to see how she is, and have a cup of tea and a chat.   She’s suffering with extreme anxiety which I’m sure cannabis would help her with, but she’s resistant to trying anything that isn’t prescribed by her doctor – if only this country would get up to speed on medicinal cannabis!

2019-07-08 – Mostly sitting on the sofa.

Not a lot going on here today – I’m still feeling fatigued and lacking in motivation, so I’m mostly sitting on the sofa in the lounge catching up on current events on The Metro online.  I do manage a quick excursion to the primary school in Northrepps to purchase tickets for a children’s Circus that is visiting this week, and to which we are taking our two senior granddaughters on Wednesday.

Late this afternoon I pop in to see our neighbour (who has been unwell recently).  We have a cup of tea and a chat, and then I return to my sofa!

2019-07-07 – A good night’s sleep.

We both have a good night’s sleep on the boat – there must be something soothing about the movement of the boat on the water, because we always seem to sleep soundly on here.  

I spend the day sitting in the sun reading the book sent to me by my Facebook friend in Canada (Always Looking Up by Michael J Fox) while my wife elects to scrub the  outside of the boat from  roof to waterline.   I read the book from cover to cover whilst the boat is transformed from a very grubby thing into a clean and shiny vessel. 

We return to Southrepps in the late afternoon, both of us exhausted (my wife, justifiably; me, less so). 

2019-07-06 – Going to the boat.

We are going to the boat for the night tonight, so my wife busies herself with the usual weekend chores while I walk the dog and post links to my weekly vlog on Facebook and a number of online Parkinson’s forums that I am subscribed to.  It’s late afternoon by the time we have packed the car with bedding, overnight bag, charged boat battery, dog etc. and driven to Wayford Bridge where our boat is moored.   We pootle down the River Ant to Barton Turf where we moor up and cook our dinner, before realising that we have left the bag containing the beer inside my wife’s car back at the boatyard – disaster!!  After we have eaten our meal we decide to motor back up the river to the boatyard, where we retrieve the beer and chill out for the evening. 

2019-07-05 – Difficulty in motivating myself.

I’m having great difficulty in motivating myself to produce my weekly vlog, so most of the morning is spent checking social media and reading the Metro online, rather than researching and writing a script.  I am, therefore, extremely behind schedule.  My wife calls me this afternoon to tell me that we are invited round to her eldest son and partner’s house this evening to see our latest granddaughter, so I drive over to Hevingham once I have published my video, arriving almost 2 hours later than everyone else – better late than never!

2019-07-04 – Another day passes…

Another day passes by without me donning an apron and preparing the medicated chocolate brownies that I’ve been planning – I won’t have time to do them tomorrow (Friday being vlog day) so it’ll be next week now (unless I get the opportunity and inclination to make them over the weekend).  On a more positive note, I finally finish writing a letter (over a consumer issue) for my wife’s youngest son and his wife, I email Norman Lamb (my MP) taking him up on his offer to “intervene further” in my quest to be prescribed exenatide, and I write a letter to my Norwich neurologist to correct his factually incorrect letter to my GP

I wrap the day up by preparing a few days worth of thiamine capsules. 

2019-07-03 – Unrefreshed.

I feel unrefreshed by sleep, even though I slept fairly well last night, and I am fighting sleep on a number of occasions.  Needless to say, I don’t do very much at all today.  I have been neglecting to write my daily blog, so I manage to catch up on that while I’m sitting on my backside in the lounge.

I intended to make some medicated chocolate brownies this afternoon, but I simply can’t generate sufficient enthusiasm for the task – tomorrow, perhaps…

I feel extremely anxious over tasks that I need to perform that I can’t motivate myself to do, letters and emails that I need to respond to that I keep putting off.  It seems wrong to medicate with cannabis to alleviate my anxiety (rather than motivate myself to get stuff done) but being unmotivated is significantly better than being anxious and unmotivated…

019-07-02 – At the cottage hospital.

I have a physiotherapy appointment at the cottage hospital in North Walsham this morning.  I manage just over 45 minutes on the motorised exercise bike, which I’m reasonably satisfied with. 

While I’m in North Walsham I call in to Lidl and purchase the ingredients for some chocolate brownies that I intend making later in the week.  When I get back home I infuse some coconut oil with cannabis with the intention of using the infused oil when making the brownies – I need to have some edibles (slower release than vaping cannabis) for nighttime so that I can turn my DBS off when I go to bed, and give my brain a rest from constant stimulation. 

2019-07-01 – Feeling very low.

I bump into one of my neighbours whilst taking the dog for her morning walk.  She senses my mood (I’m feeling very low today) and asks me in for a cup of tea and a chat.  While I’m there I assist her husband with manhandling a piece of slate into his car and taking it to a local workshop to have it cut to size, and then sit in the sunshine in their back garden and have a bite of lunch with them. 

While I think about it, I email the parish clerk about the allotment to inform her that I do not wish to renew the lease this year, due to ill health.  I feel defeated by it, and I hate being defeated, but if I no longer have the energy to tend to it (and I haven’t) then there’s no sense in being a fool about it. 

2019-06-30 – Stressing about the boat.

I’m aching all over from my exertions at the allotment yesterday, so I’m moving around rather more slowly than usual today.  I’ve been stressing about the boat, because we haven’t been to check on it for some time (and I have a recurring nightmare about finding that it has sunk), so this morning my wife and I drive over to Wayford Bridge (where our boat is moored) to make sure that it is still afloat. 

It is still on the right side of the water, but the main battery (which runs the bilge pump) is almost totally discharged, so we bring it back to Southrepps for recharging, putting one of the leisure batteries in its place for the time being.

This afternoon we go to Hevingham (again) to see our latest granddaughter meet her great-grandparents.   I get to hold her again, and I’m so grateful for my DBS – when our first granddaughter was born (prior to my operation) I hadn’t been comfortable holding her because of my severe tremor. 

2019-06-29 – Feeling defeated.

It’s a beautiful, hot sunny day here in Norfolk, and I decide to go to the allotment to harvest some spinach and water the courgette (zucchini), pumpkin and kale plants.   Recent rainfall, followed by the current spate of warm sunny weather, has turned our plot into a jungle.  The spinach plants have all gone to seed and are almost as tall as I am; the grass is almost waist high in places, and I’m feeling defeated.  I pull up the spinach, weed around the courgette, pumpkin and kale plants (and water them), and then cut down the worst of the weeds with the shears.   I’m completely knackered after less than 30 minutes work, and I stagger back home to collapse onto the sofa to recover. 

This afternoon my wife and I are invited to a barbecue at her youngest son’s house so, after I have recovered sufficiently, we head over to Hevingham where we sit in the garden and are well looked after by the younger generation.

2019-06-28 – Being over-critical.

I’m extremely tired from being at the Royal Norfolk Show for the last couple of days, and so my voice is suffering more than usual.   I manage (with gargantuan effort) to employ strategies suggested by the speech therapist, projecting my voice, slowing my rate of speech and exaggerating my enunciation when filming my weekly vlog.  I still think that my voice sounds high pitched and indistinct, but one of the first comments that I receive on YouTube says that my voice is sounding clear and strong, so perhaps I’m being over-critical.  

2019-06-27 – Another long day.

Another long day at the Royal Norfolk Show (promoting my wife’s soft furnishings business).  I take my video camera with me today, to film one of our trade stand neighbours (massagical) who wants to have a video on YouTube.  I’m not sure that the sound quality is acceptable, but I’m sure that I can do something with the footage that I take, even if I have to narrate it.

At 6pm it’s all over (thank goodness), and my wife’s youngest son and his partner turn up at the Norfolk Showground to help us dismantle the stand and take it all back to the workshop in Hevingham

2019-06-26 – The Royal Norfolk Show.

My wife has a trade stand at the Royal Norfolk Show (to promote her soft furnishings business) today (and tomorrow) and so I am helping out (or, rather, hindering).  We are up, tea/coffee drunk and out of the house by 7.30am, and my wife drives us to the Norfolk Showground

My wife has a busy day on her feet – chatting and handing out leaflets to potential (and not-so-potential) customers, while I plant myself on a chair at the back of the stand and watch her working (I do go and get some hot drinks at one point, so I’m not completely useless!). 

2019-06-25 – A tad annoying.

I wake with tremor in my left leg, which is a tad annoying.  I try to ignore it, but by lunchtime I’m fed up with it so I decide to increase the voltage on the left side.  I increase the voltage by several increments until I feel that the tremor is under control (so now the left side is receiving 2.50 volts, the right side remaining at 2.25 volts)

I decided not to turn my DBS off the last couple of nights because, although I get off to sleep okay, if I wake up during the night after the cannabis has worn off, then I wake with severe tremor and cannot get back to sleep again without switching my DBS on again (or taking some more cannabis) and at 3am or 4am it’s the last thing that I want to be doing.  If my voice gets any worse (and I can get an improvement by turning my DBS off at night) then I reserve the right to change my mind…

2019-06-24 – Tremor!

My voice is deteriorating again so I decide to change my neurostimulator settings again, and select group “B” settings – adjusting the voltages to the minimum allowed (1.40 volts on the left, 2.15 volts on the right).  Significant tremor on both sides (but mostly in my left leg) instantly emerges.  I put up with it for a couple of hours before increasing the left hand voltage to 2.00 volts and the right hand voltage to 2.25 volts – this calms the  tremor on my right side, and makes the left sided tremor more bearable. 

This evening my wife and I go to her eldest son’s house in Hevingham to meet the latest addition to the family (she’s gorgeous!), and my tremor is sufficiently contained to enable me to hold her for a little while. 

When we get back to Southrepps I self-medicate with Hobgoblin and cannabis, which helps with tremor control and helps me get off to sleep.  

2019-06-23 – Our third grandchild!

Our third grandchild enters the world today (another girl, 6lb 6oz – mother and baby doing fine), so our day revolves around this.   We meet up with my wife’s youngest son and his wife at Longwater retail park where we melt several credit cards buying baby clothes in Next, and then adjourn to their house in Hevingham for food and drink.  

2019-06-22 – John West Great East Swim.

Today I drive to support some good friends of ours who are taking part in the John West Great East Swim at Alton Water near Ipswich.  My wife stays in Norfolk because our next grandchild is on its way and she wants to be on hand for her eldest son and his partner if they need her.  The swim goes swimmingly, and our friends and I retire to a local pub for some light refreshment before departing for the drive back home. 

I arrive home late afternoon, absolutely shattered from the driving – probably exacerbated by my DBS settings, which are permitting some tremor to break through and also causing a fair amount of muscular tension in my arms.  

There’s no sign of the new baby just yet, so my wife is at her eldest son’s house in Hevingham, babysitting our eldest granddaughter (her eldest son and partner are at the Norfolk and Norwich Hospital).  I self-medicate with some cannabis and a bottle of Hobgoblin,  switch my DBS off,  and get to bed. 

2019-06-21 – The efficacy of cannabis.

Last night I turned off my DBS and proved (again) the efficacy of cannabis as a medicine.  My voice was so weak when I arrived home (from visiting the NHNN in London) late last night, that my wife suggested that I turn it off to see if my voice was any better without it.   The difference is instantly noticeable – my voice is stronger, and my tremor comes back with a vengeance!  I vape a little cannabis, and within 5 minutes my tremor has eased a little.  Within 15 minutes it is completely under control.  When we go to bed my wife has to ask me if I’ve still got my DBS switched off (I had) – in fact I left it switched off all night, only switching it back on when I awoke this morning because of the severe tremor in my legs.  I change my neurostimulator to use group “A” settings, and then turn the left and right voltages down to the minimum (left side is now 2.50v, right side is 2.05v) – tremor control isn’t 100%, and I have some dystonia in my right foot, but it’s tolerable so I’ll leave it like that for 24 hours or so and see how I feel.  

2019-06-20 – Another fiddle.

I’m travelling down to the NHNN in London today, so that the DBS speech therapist and his neurologist buddy can have another fiddle with the settings of my neurostimulator.  I catch the 10.07am train from Gunton station and arrive at the hospital (slightly out of breath) a few minutes before 1.30pm.   As before, the first thing that happens is that the DBS speech therapist creates a benchmark by recording my voice prior to any adjustment.  The neurologist then attempts to improve my symptoms, concentrating on my voice and tremor.   On this occasion, however, he is unable to locate settings that are an improvement on those that he programmed on my last visit, three weeks ago.  To say that I’m disappointed is an understatement, but the neurologist suggests that I cycle through the three lots of settings that are currently programmed into my device, in order that they don’t get a chance to “soak in” (or for my brain to become accustomed to specific stimulation) and see if that improves matters.   The speech therapist listens to my voice and doesn’t even bother to compare it to the benchmark – he can hear that nothing has changed.   I tell him that the neurologist has been unable to improve my voice, and his suggestion of cycling through my settings.  He wishes me luck, and that’s it…

I finish my day in London in the usual fashion (food from McDonald’s followed by some live music and a couple of beers in the Blues Bar) and then I catch my train back to Norfolk.

2019-06-19 – Payback.

It’s payback time for the little bit of weeding that I did at the allotment on Monday afternoon, so my arm and leg muscles are stiff and painful, and I’m staggering around like a drunk – add this to my slurred speech, and the casual observer would be left in no doubt that I’d been on the sauce!

The DBS speech therapist responds to my email, and offers me an appointment tomorrow, which I gratefully accept, so I book myself a train ticket for tomorrow morning.  My London neurologist also replies to the email about prescribing me exenatide that I sent her yesterday, saying that she “will look into it”.   Strange… I was under the impression that that’s what she said she was going to do when I last saw her (in February).  I hope I bump into her at the hospital tomorrow, so that I can pester her some more!

2019-06-18 – A blast in the countryside!

I’m feeling very low at the moment, probably (in part) due to a lack of motivation that I’m having great difficulty in overcoming, and also (I think) because my voice has been giving me trouble again.  I decide that I simply must get off the sofa and get out of the house for an hour or two, so I get into my car and go for a blast in the countryside, just for the hell of it. 

After a couple of very pleasurable hours, I return home and attend to more important matters.  My voice has deteriorated significantly over the last week or so (following a review of my neurostimulator settings, almost three weeks ago, which had, initially, improved things) and I had promised the DBS speech therapist that I’d drop him an email to let him know how I was getting on – so I send him an email apprising him of the current situation, and asking his advice.   While I’m at it, I send an email to my London neurologist to ask what progress (if any) has been made with obtaining exenatide for me – she told me that she would chase it up when I last saw her in mid-February, and I’m getting just a little impatient…

2019-06-17 – A winning combination!

I’m tired and unmotivated – what a winning combination!  Consequently, most of the day is spent sitting on my backside in the lounge, surfing the internet.  

This afternoon I bully myself into going to the allotment when I take the dog for her second walk of the day.  I need to harvest some more spinach, and I take a nut and bolt with me to try to repair the handle of the lawnmower so that I can cut the grass.   Recent wet weather has turned the place into a jungle, so I urgently need to spend some time down there making it nice and tidy.  I pick a bag of spinach and also harvest a couple of pounds of rhubarb (which I’ll give to our neighbour) and then I spend half an hour weeding around the kale, pumpkin and courgette (zucchini) plants.  Lastly, I try to fix the lawnmower, but the bolt that I have brought with me is too big for the job so I’ll have to find a smaller one and try again another day. 

2019-06-16 – Father’s Day!

It’s Father’s Day, so my wife and I are invited to join her sons, their partners, her ex-husband and our granddaughters for breakfast in Norwich.  

It’s lunchtime by the time we get back to Southrepps, and my wife busies herself wrapping gifts for her father whilst I open cards and gifts and chat to my kids online. 

This afternoon we drive to Smallburgh to visit my eldest nephew and his girlfriend, who have just bought their first house together.  We take a bottle of prosecco and a housewarming card, and are given a tour of the property, which is a really nice 2-bed terrace.  We drink a beer together, and then my wife and I depart for her parent’s house in nearby Worstead to give her dad his Father’s Day gifts.

2019-06-15 – Catching up with the news.

My wife is working, once again, so I have a quiet day.  I walk the dog, tidy up and vacuum downstairs, and slump on the sofa in the lounge, catching up with the news on Twitter and by reading The Metro online.

This evening we drive to The Marsham Arms (nearer to Hevingham than it is to Marsham) to attend the 50th birthday party of an ex-colleague of  my wife.  By the time we arrive, all of the seats indoors are taken, so we sit outside on the patio, eating, drinking and chatting until it starts to rain. Forced to go back inside, there’s only so much standing that I can take so, after singing happy birthday to the birthday girl and scoffing some birthday cake, we make our excuses and return to Southrepps.

2019-06-14 – My failing voice.

It’s Friday, so it’s vlog day and my failing voice is causing me problems!  It’s now over two weeks since I travelled to the NHNN in London and had a thorough shakedown of my DBS settings.  The improvements that were made on that day have slowly faded as my brain has become accustomed to the changes in stimulation and the new settings have “soaked in”.  Today I find it much more of an effort to speak, and my voice is higher pitched and I sound as though I’ve had a few drinks.  I’m using all of the strategies recommended by the speech therapist yesterday, but even so I think my voice sounds absolutely rubbish.  I’ll send an email to the DBS speech therapist next week and see what he suggests (he  asked me to let him know how I got on with the new settings). I have a feeling that I’ll be travelling back down to London in the near future.  

2019-06-13 – Harder to talk.

I have a speech therapy appointment at the community hospital in Norwich this morning, so I drink my mugs of tea (I’ll have my nutriblast for lunch when I get back), walk the dog and then jump into my car and drive to the hospital.  My speech has been in decline (again) over the last week or so, the new settings that the neurologist at the NHNN programmed have now “soaked in”, and the result is that my voice is softer, higher pitched and slurred, which is most disappointing.  The Norfolk speech therapist agrees that it sounds like I’m having to work much harder to talk, and we spend the appointment working on articulation and enunciation, which helps me develop strategies to help me make myself understood.  I feel that I’ll be making another trip to the NHNN  sooner rather than later, but I’ll drop the DBS speech therapist an email, in the first instance, telling him that I’m struggling a bit, and see what he suggests.

2019-06-12 – The bare minimum.

I am still managing to do the bare minimum today. Two dog walks (one of them in the rain) and a bit of a tidy up downstairs, followed by a quick dash around with the vacuum cleaner.  That’s about it, although I do prepare dinner for my wife and I while she plays with the Fitbit scales that I bought on eBay for her (and which were delivered this afternoon).

After dinner we watch some more Orange Is The New Black on Netflix, and I find (and order) some step-ladders on eBay that my wife needs for her soft furnishings business.

2019-06-11 – Slightly cheesed off.

It’s still grey and wet outside but, on the plus side, my back is slightly less painful than it was yesterday.  I have been referred (at my request) for a series of physiotherapy sessions on the motorised exercise bike at North Walsham cottage hospital, starting today.  So, after walking the dog and drinking a couple of mugs of tea, I drive to North Walsham for my appointment.   I’m slightly cheesed off that my next appointment is now at the beginning of July (due to the unavailability of staff) because the benefits of this physiotherapy are cumulative, so any benefit derived today will have receded by the time of my next appointment.  I manage to cycle for almost 50 minutes, which I’m pleased with, given that my last session was 4 months ago. 

This afternoon I sit quietly and recover, before taking the dog for her afternoon walk (when the rain stops, briefly).

2019-06-10 – Fed up.

I’m feeling fed up at the moment.  I’m still in pain with my back, I’m still not feeling very motivated and it’s cold, wet and windy outside – so I’m sitting on the sofa in the lounge (just for a change) doing very little apart from reading The Metro online. 

This afternoon I make up some thiamine capsules for the week ahead, re-pot some seedlings in the conservatory, walk the dog (in the rain, which shows no sign of stopping) and vacuum downstairs.

That’s it, day over.   My wife arrives home from work, we eat dinner, watch some Orange Is The New Black on Netflix, and get a (reasonably) early night.  

2019-06-09 – Popping painkillers.

I’m still popping painkillers this morning – my lower back pain is still there, so I sit down and take it easy while my wife races around cleaning and tidying, doing the laundry, etc.  

This afternoon we drive over to Marsham, where my wife’s sons are metal detecting in a field owned by her youngest brother’s mother-in-law.  Both of her brothers are there as well, so it ends up being a bit of a family get-together.  While we are there, my wife’s eldest son finds an old coin (identified as an English Jetton, which is about 700 years old) and that has made his day worthwhile!  

On return to Southrepps, we drop in to see Sheila Robinson (a local artist) and her husband, who are friends of ours.  It is the last day of Open Studios, and we have been meaning to go to see them before it ends.  We have a cuppa and a good old chinwag with them, buy some of her beautiful greetings cards and then leave them in peace, promising not to leave it so long next time!

2019-06-08 – Sitting on my backside.

I have the day to myself (my wife is at work again), and I spend the majority of it sitting on my backside.   I still have quite a lot of lower back pain, but it doesn’t hurt quite so much when I sit still.  That’s my excuse, and I’m sticking to it!  I  take the dog for her walks, but otherwise remain in the house.

This evening my wife and I join her sons and their partners, her ex-husband and our granddaughters in Hevingham for a takeaway Chinese meal from the Eastern Sea takeaway in Aylsham.   This get-together was, ostensibly, to discuss and book activities for our family holiday to CenterParcs in Longleat later this year, but that was really just an excuse – the women decided what we are going to do and when we are going to do it, us blokes were just there to make up the numbers.

2019-06-07 – Still fairly crippled.

I’m still fairly crippled this morning, although my back pain is only about half of what it was yesterday. My wife takes the dog to work with her, which relieves me of my dog walking duties for the day, so I won’t have to hobble around the field by the village hall.  I didn’t sleep very well last night (due to back pain), and fatigue shows in my speech, which is a little indistinct and slurred this afternoon, and deteriorates as the day progresses. 

Our neighbour suggests a takeaway curry round at their house this evening so, having completed my weekly vlog ahead of schedule (for a change), we drive to Al-Haqq’s Kitchen Indian takeaway in North Walsham, place our order and retire to the nearby Hop In (a tiny local bar, serving a variety of cask ales and craft beers) where we enjoy a pint whilst waiting for our food to be prepared.  

There follows an evening of good food, red wine and much conversation and laughter. 

2019-06-06 – Crippling pain.

Any thoughts of washing my car or going to the allotment today go straight out of the window this morning.  I’m sitting on the sofa in the lounge drinking my tea, and everything is fine.   I stand up to take the dog for her morning walk, and suddenly I have crippling pain in my lower back and I can’t stand up straight.  I’m guessing that one of the bulging discs in my lower spine (diagnosed over 15 years ago, but not having given me any trouble for a long time) is the culprit.  I never take pills unless absolutely necessary, so the fact that the first thing that I do is take some co-codamol is an indication of how much pain I’m in.  

The painkillers don’t even take the edge off it, and cannabis isn’t much better, so I sit as still as possible (I’ve had a lot of experience of doing this, so I’m pretty damn good at it) with a cushion in the small of my back.   I take the dog out for her two walks, but it is absolutely agonising – I’m unable to stand up straight, and I hobble and stagger around the field by the village hall.  Luckily I don’t bump into anyone that I know.   

This evening I bombard my body with muscle relaxants and painkillers (alcohol, cannabis and ibuprofen), get myself to bed and hope that the pain will be more bearable tomorrow.

2019-06-05 – A good day for washing my car.

It’s a good day for washing my car (it’s overcast but dry, and the rain of yesterday will have softened the bird crap with which it is liberally covered) but I’m still not very motivated, and I’m still feeling fatigued.  Instead, I sit on the sofa in the lounge catch up with the news in The Metro online, and search eBay for another Samsung galaxy tablet (for my wife’s father). 

This afternoon, the sun comes out and I decide to combine walking the dog with a trip to the allotment to harvest some spinach and check on the courgette (zucchini) and pumpkin plants.  It’s hard to believe how overgrown it has got in just a few days, and I decide to run the mower over the grass paths.  Unfortunately, I manage to lose one of the bolts that secures the handle to the mower, so I only get about half of the job done.  I’ll have to find a replacement bolt at home, and return tomorrow to fix the handle and finish the mowing.

2019-06-04 – My Norfolk neurologist.

I have an appointment with my Norfolk neurologist at the Norfolk and Norwich hospital at 12pm today so, after drinking my two mugs of tea and nutriblast, walking the dog and helping our neighbour to install a new broadband router, I jump into my car and drive to Norwich.  The traffic is heavy and there are a multitude of road works so, by the time that I’ve managed to park and then walk to the Neurology Outpatients department, I’m 10 minutes late and not in the best of moods. 

Feeling a bit grumpy, I’m probably a little stroppy with my neurologist, particularly when he asks me how I am, and what medications am I taking.   We have yet another discussion about my use of cannabis (rather than taking dopamine replacement pharmaceuticals) and he actually watches my video showing the effect that cannabis has upon my tremor.   He promises to request cannabis for me from the Medical & Drugs Board, although he knows (as do I) that the chances of them approving it are zero.  I’m going to go into more detail in my weekly vlog this Friday, so take a look over on my YouTube channel if you’re interested. 

It’s raining steadily by the time I get back to Southrepps, which prevents me from doing any work down at the allotment or washing the car (or, should I say, gives me the perfect excuse) so I pop over to our neighbour’s for a cup of tea and a chat.

2019-06-03 – Full of the joys of Spring.

I slept like a log last night, so I should, therefore, feel refreshed and full of the joys of Spring.  I feel exhausted and incapable of achieving anything.  I desperately need to spend a couple of hours (at least) down at the allotment, weeding the vegetable beds and mowing the grass, but I simply don’t feel up to it.  My car is an absolute disgrace and I’d like to spend the afternoon washing it, but if I just take things easy then maybe I’ll have the energy to do so later in the week (and in the meantime perhaps we will get some rain, which would go some way to softening all of the bird crap and make the task a little less demanding). 

My wife’s youngest son (and his wife) invite us over for a barbecue this evening so, after taking the dog for her afternoon walk, we drive over to Hevingham where we sit out in the garden eating spare ribs, burgers and hot dogs while the midges make a meal out of us.

2019-06-02 – Painful cramps.

I have a disturbed night, and am awake multiple times with painful cramps in my lower legs. I had this on Thursday night, following my settings adjustments on Wednesday.  I’ve never had this before (hips, yes; toes, yes; calves and ankles, no) and since I’m not a great believer in coincidence, I expect it’s related to my new settings.   If it happens again, then I’ll try going back to my previous settings overnight…

I was always going to be feeling a bit fragile today (because I definitely overdid things yesterday) but my disturbed sleep means that I’m doubly knackered and really don’t feel like doing anything at all.   I really wanted to finish working on my wife’s car by vacuuming inside and cleaning the windows and dashboard, but that’s simply out of the question at the moment.

My wife arranges for us to meet up with her sons, their partners and our granddaughters for a picnic by the village hall in Hevingham, so she disappears off to North Walsham to buy picnic type food from Lidl, and then we drive to Hevingham to meet up with them all.  I’m not great company at the best of times, but I’m worse than usual this afternoon.  My wife makes up for my lack of energy by running around after the grandchildren until they (and my wife) are thoroughly worn out. 

We arrive home around 6.30pm, and I’m really not fit to do anything but have a shower and go to bed. 

2019-06-01 – Overdoing things.

My wife is in house-cleaning mode today, so I decide to keep myself out of the way by cleaning her car.  Hers is only a small hatchback (a Seat Ibiza Mk3) but by the time I’ve washed and polished it, I’m fit to drop.  It’s something that I never seem to learn – not overdoing things.  I’m well aware that I tire much more quickly than I used to, and also that everything is twice the effort (at least) that it was before Parkinson’s, but still I behave as if nothing has changed, and I’ll pay the price for that over the next two or three days. 

This afternoon my wife suggests going into Norwich to do some shopping.  I feel the need to get out of the house for a while, so off to Norwich we go.  I’m so fatigued that I find walking around the shops a real strain, so spend most of the time sitting down (wherever I can) while my wife searches for what she wants.  I’m relieved when it’s all over and we return to the car to drive back home.  

I’ve seldom felt this wiped out, so I really do need to give myself some time to recover.  An early night tonight and a day of rest tomorrow should go some way to doing just that.

2019-05-31 – Still recovering.

I’m still recovering from last weekend (and a busy week this week) so that’s really decided the focus of this week’s vlog – the reasons for my fatigue, with the latest day trip to London (to have my settings adjusted with the aim of improving my speech) being one of the main reasons that I’m feeling so completely exhausted.  

I write a script without any problem, but filming is more of an issue than has been of late – I keep catching myself slurring, and have a multitude of retakes.  My voice is certainly  stronger than it has been for quite some time, but fatigue is causing me problems with enunciation, and I have to make a significant effort to be understood.   That said, as soon as I publish the completed video, I have a comment saying how much clearer my voice sounded, so perhaps I’m worrying about nothing. 

2019-05-30 – More speech therapy.

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!

2019-05-29 – The NHNN.

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.

2019-05-28 – Extremely tired!

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!

2019-05-27 – Back home to Norfolk.

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.

2019-05-26 – Shadowing my wife’s father.

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. 

2019-05-25 – People watching.

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.

2019-05-24 – Driving to Cumbria.

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.

2019-05-23 – Doing my weekly vlog.

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.

2019-05-22 – Counting buttons.

 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).  

2019-05-21 – A stocktake.

 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.  

2019-05-20 – Stuff that I need to do.

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.

2019-05-19 – Fairly miserable.

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). 

2019-05-18 – Sitting on my backside.

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!

2019-05-17 – Determined!

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.

2019-05-16 – A Samsung Galaxy tablet.

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).

2019-05-15 – My 58th birthday.

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!

2019-05-14 – A little better.

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.

2019-05-13 – The word of the moment.

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.  

2019-05-12 – Sunday lunch in The Vernon Arms.

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.

2015-05-11 – Birthday girl.

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).   

2019-05-10 – Falling at the 127th hurdle.

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.

2019-05-09 – My final speech therapy group.

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.

2019-05-08 – A bit low.

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!

2019-05-07 – Re-potting seedlings.

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!).

2019-05-06 – A fair amount of pain.

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…

2019-05-05 – Trying (and failing).

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.

2019-05-04 – A birthday cake.

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.

2019-05-03 – Swear words.

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.

2019-05-02 – Swallowing issues.

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.

2019-05-01 – Waiting.

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.  

2019-04-30 – Doing some admin.

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.

2019-04-29 – Over-exerted.

I feel tired and aching today, presumably because I over-exerted myself yesterday when I was moving sofas and cleaning the lounge.  Whatever, I don’t feel up to doing very much aside from the mandatory dog walks.  

The seeds that I planted a couple of weeks ago (in little pots in the conservatory) are looking like they could do with being planted out, but I really can’t face going to the allotment today.  Tomorrow, perhaps?

My wife’s car is going to the garage for its MOT, so I drive to Hevingham to collect her from work this evening.

2019-04-28 – More cleaning and tidying.

More cleaning and tidying is on the agenda for today, so I decide to clean the lounge – moving the two sofas to clean behind them, and re-positioning the rug on the floor (which has a habit of creeping).  

Late this afternoon we decide to drive to Cromer (to get us out of the house, more than anything) and we pop into Morrisons  (for a couple of bottles of beer) and Argos (for some bathroom storage items).

This evening we drive over to my wife’s parents house in Worstead for a sociable hour or two, drinking tea and chatting.

2019-04-27 – Watching my wife work.

My wife is actually having this weekend off work, so today is spent cleaning and tidying the house.  I don’t have a lot in the way of energy at the moment, so mostly I’m sitting on the sofa in the lounge, watching my wife work.  

I do sort out my Winter clothing (to be stored in the loft until next Winter) and replace sweatshirts and wooly jumpers with t-shirts and shorts that have been stored in the loft since the end of Summer last year.  I also wander down to the allotment (while taking the dog for her afternoon walk), pick a bagful of spinach and pull up a few weeds.

2019-04-26 – My neurostimulator.

I’m getting quite a lot of tremor breaking through on my left hand side (mainly in my left leg), so I decide to have a play around with the settings on my neurostimulator.  

I have been using group “B” settings because the group “A” settings seemed to affect my voice more.  I merely wanted to increase the voltage on the left side by 0.1v, but I find that (at 2.60v) I’m already at the maximum permissible voltage.  

I change over to group “A” settings and increase the left hand voltage from 2.80v to 2.90v (each group has a range of permissible voltages, and group “A” will allow me to vary the voltage on the left side between 2.50v and 3.30v in increments of 0.05v), and immediately my left leg calms down a little.  I’ll let this setting “bed in” for a while and see how it goes, although I really struggled with my voice whilst filming this week’s vlog (over 70 takes for a 5 minute video – it would normally be about half of that number).

2019-04-25 – Speech therapy group.

I’m feeling the effects of overdoing things yesterday, and really don’t want to travel to Norwich Community Hospital for my speech therapy group this morning.  I make the effort, however, and take the dog for an early walk before leaving Southrepps to drive to Norwich.  

The speech therapy leaves me thoroughly tired out, and I’m slurring like a drunkard this afternoon.  I need to go to the allotment and do some more digging and weeding, but I’m not feeling up to it – I don’t expect I’ll go there until next week now, because tomorrow is vlog day (so I’ll be too busy) and I’m not sure what my wife wants to do over the weekend as yet.

I have a quick tidy-up downstairs and run the vacuum cleaner around before my wife arrives home from work, and then we go to Lidl in North Walsham to do the weekly grocery shopping.

2019-04-24 – Entertaining.

My wife and I are tasked with entertaining our granddaughters today, so we decide to take them to Hillside Animal Sanctuary, which is nearby.  It’s a lovely sunny day (if a little breezy) and we all enjoy seeing the variety of horses, pigs, goats, sheep etc., and having a stroll in the sun (although I had to take a rest every now and then).   My wife drops me back in Southrepps while she returns the grandchildren to their parents in Hevingham, which gives me a little time to recover from the exertion. 

I recover sufficiently to give my wife’s car a quick wash (while she prepares our dinner), but I think I’ve probably overdone things again!

2019-04-23 – A sedentary fashion.

I spend the day in a sedentary fashion, recovering from the busy Easter weekend by researching replacement rub rails and pricing up replacement batteries  (on the internet) for the boat – the time has come for some money to be spent!  

I don’t do much more than that, aside from the usual dog walking, because I’m feeling tired and anti-social – so I don’t even feel like wandering round to our neighbour’s house for a cup of tea and a chat.  Hopefully I’ll be full of the joys of Spring (again) by tomorrow.  

2019-04-22 – A barbecue.

We are invited to a barbecue at my wife’s youngest son’s house this afternoon, so (after quaffing a couple of pints of tea) we head back up the River Ant again, where we moor up (at Wayford Bridge) and transfer all of our baggage from the boat to my wife’s car.  We drive to Lidl in North Walsham to buy salad stuff and a couple of desserts (so that we don’t turn up empty-handed), and then drop in to Southrepps to get changed and empty the car of our luggage.  

We have a relaxing afternoon and evening with my wife’s family, eating and drinking and being entertained by our granddaughters.

2019-04-21 – On the Norfolk Broads.

A relaxing morning on the Norfolk Broads, following on from a really good night’s sleep (it must be down to the fresh air and the gentle rocking motion of the boat). 

We motor back up the River Ant to Wayford Bridge, where we leave the boat for a few hours while we drive to Southrepps (to pick up my wife’s inflatable kayak and some food for our meal on the boat this evening) and Tesco in Mundesley (to buy some more beer).

Arriving back at the boat late this afternoon, we cruise to Stalham to see if there is any space for us to moor at the staithe – there isn’t, so we end up back at Barton Turf again.  After our evening meal (prepared by my wife) we chill out with a beer or two whilst watching an episode of Peaky Blinders on Netflix, and then grab an early night.

2019-04-20 – On the boat.

We decide to spend a couple of days on the boat so, after a shopping excursion to Dunelm in Norwich (to buy some Easter gifts for our granddaughters, rather than rotting their teeth with chocolate eggs) we pack our bags, grab some beer and a couple of ready meals from Lidl in North Walsham, and drive to Wayford Bridge (where our boat is moored).  

We fill the water tank, start the engine, get the dog settled onboard and then cruise down the River Ant to Barton Turf where we moor up for the night.

2019-04-19 – A few well deserved days off.

My wife is having a few well deserved days off work.  She can’t sit still, however, so this afternoon she drives over to Hevingham to help her youngest son decorate his bedroom, leaving me in peace to film and edit my weekly vlog

My peace is interrupted by the arrival of my youngest nephew and his partner who call around to take me for a beer.   So, we go over to The Vernon Arms to have a beer and a chat (it’d be rude not to), and my schedule for the day is well and truly disrupted. 

I still manage to complete my video, upload it to my YouTube channel and publish it by the time my wife returns from her wallpapering, so all is not lost!

2019-04-18 – Another speech therapy session.

I have to be at Norwich Community Hospital for another speech therapy session this morning, so I take the dog for an early walk, slurp down two mugs of tea and then drive to Norwich.  Today’s session concentrates on the volume of the voice – again, nothing new to be learnt, but a useful exercise, nonetheless.  I fill my car’s petrol tank whilst I’m in Norwich (significantly cheaper than it is closer to home) and I’m back in Southrepps around lunchtime. 

I make a start on researching and scripting my weekly vlog today – it’s Good Friday tomorrow and my wife will be at home, which makes it more difficult for me to film and edit in peace.  Ideally, I would film myself today, but that just doesn’t happen!

Late afternoon, I take our neighbour’s card and present round, wish him a happy birthday and then take him and his wife over to The Vernon Arms for a birthday drink (or two).

2019-04-17 – On the mend.

I’m definitely on the mend, and not feeling anywhere near as bad as I have been.  I’m still feeling the effects of having overdone things on Monday, however, and my muscles are still pretty sore.   I manage to do half an hour of weeding in the back garden, mind you, so I can’t be that bad.  

It’s our neighbour’s 70th birthday tomorrow, so I drive to North Walsham to get him a birthday card and a bottle of bubbly, and I also pop into Lidl to buy some essentials (fresh fruit to go in our nutriblasts, and some bottles of Hobgoblin).

2019-04-16 – Still coughing and hacking.

I’m still coughing and hacking this morning, but I feel as though the worst of this cold has passed (at long last).   I definitely overdid things yesterday, though, because my muscles are aching and I don’t feel up to doing anything (apart from sitting on the sofa and recovering).  

The dog drags me out of the house for the customary two walks, I run the vacuum cleaner around downstairs and then bung a ready meal in the oven for our dinner – and that’s all, folks!

2019-04-15 – Online orders.

I spend the morning, when the symptoms of my cold (yes, it’s still making its presence felt) are at their worst, taking it easy.  I remember to place online orders for the dog’s food and my thiamine powder, both of which we are running out of.  

I’m feeling better around lunchtime, and take a walk down to the allotment.   I decide to mow the grass before it becomes unmanageable, which raises a bit of a sweat.  I intended to start digging over another vegetable bed, but realise that I simply don’t have enough energy in reserve.  I pick a bag of spinach (for inclusion in our daily nutriblasts) and stagger back home to sit down and recover for a while.