Author: Ian

I’m not as tired as I thought I would be, following our late night last night.  My mood is reasonably good as well, and I feel able to do stuff today.

My wife is working from home again today, bringing the accounts for her soft furnishings business up to date, so I spend the day helping the effort, and by the end of the day we have completed the figures for last year, and have made a start on this year.

My tremor is fairly well under control today, which is always a bonus when I’m working on the computer.  My voice is still a bit pants, though.  Dystonia and dyskinesia seem to have crawled back under their respective stones, and aren’t bothering me too much.

I take the dog for her afternoon walk (my wife took her this morning), and then we call it a day, work-wise.

Dinner (fish – easy for me to chew, and I only bite the inside of my mouth a few times) and then a couple of episodes of Episodes on Netflix before catching a (relatively) early night.

We have a little shopping expedition planned today – my wife’s father had his birthday a couple of days ago, and he’s coming over this evening for dinner and to receive his birthday present, and we haven’t yet purchased his present!

So, once the breakfast formalities are out of the way and the dog has been walked, we set off for Roy’s of Wroxham (which is actually in Hoveton).   I’m not a very good shopper – I like to stride in, pick up what I want to buy, pay and then get out as quickly as possible.  I hate shopping when I don’t know what I’m shopping for, so I’ve basically had enough within 10 minutes, so my wife (who actually isn’t much better than I am, where shopping is concerned) continues looking for a gift while I find myself somewhere to sit down and wait.

My wife finds a nice sweatshirt for her father, and we return to Southrepps via Lidl in North Walsham for ingredients for a birthday cake and some bottles of beer.

I’m feeling very tired when we get home, so I sit and recuperate while my wife bakes a cake and prepares a meal for us all.

Muscular tension is quite uncomfortable in my legs and arms this afternoon, so I decide to self-medicate with some cannabis, which makes things much more bearable.

My wife’s father arrives with bottle of wine in hand (he’s a good chap!), is very pleased with his birthday present (thank goodness), and stays chatting until gone midnight, so we don’t get to bed until 1am – I expect to be tired tomorrow!

We are going over to Hevingham this morning to look after our eldest granddaughter for a few hours, so we are up, cups of tea/coffee drunk, breakfasted and out of the door (with dog in tow) shortly after 9.30am.

We spend a happy few hours chasing around after a hyperactive 22 month old (well, my wife does – I sit on the sofa, most of the time, with my iPad and merely spectate).

Its practically evening by the time we return to Southrepps, and I prepare dinner (“prepare” might be a bit of an overstatement – I reheat a lentil curry that my wife prepared a couple of days ago).

Mostly, my Parkinson’s symptoms are tolerably under control, but I have been having trouble eating my food lately, as a consequence (I believe) of Parkinson’s Disease – I cannot eat anything without biting the inside of my mouth.  This has been happening for quite a long time now (years rather than months) but just recently has become much worse.  My mouth is so sore and ulcerated where my teeth keep mangling it that I have decided to liquidise my food for a few days to give my mouth a chance to heal and for the swelling to go down.  I put my portion of lentil curry into our Nutribullet and process it until it is smooth.  I manage to bite the inside of my mouth a couple of times while eating food that requires no chewing, but that’s an improvement on the dozen or more times that has become the norm recently.

Ice cream for pudding, followed by a bottle (or two) of Bishop’s Finger and a couple of episodes of Episodes on Netflix.

It’s Friday, so it’s vlog day, and I have a busy day ahead, especially since my wife is working from home today (doing the company accounts for her soft furnishings business).  I’m very self conscious when I’m filming myself, and like to have the house to myself.

I get the routine stuff out of the way first – tea, nutriblast and dog walk – and then get stuck into writing the script. I have found a really good article about dopamine agonists, but it’s in technical language so I need to simplify it somewhat.

Once I have finished the script I get myself ready for filming, while my wife hides herself away upstairs.  I’m having real trouble with my voice today – its very weak and husky, and it’s a great effort projecting it clearly.  I have a large number of re-takes before I’m anything approaching satisfied.  I load the footage onto my MacBook and get it edited in a reasonable amount of time, considering that tremor is interfering with my use of the mouse.  It’s uploaded to my YouTube channel and published by the time we have had dinner.

I concentrate on online research today. I have decided to do my weekly vlog on the subject of dopamine agonists, and it’s a subject close to the hearts of many people with Parkinson’s, so I want to be sure that my vlog is both informative and accurate.

First off, I need a cup (or two) of tea, my wife requires similar quantities of coffee, the dog needs a walk, and I have a couple of tasks that I need to get crossed off my list (an email that I’ve been meaning to send since last week and a boat battery that really has to be ordered this morning).

I drink tea, walk the dog, send the e-mail and order the battery – achievements!

The rest of the day revolves around my vlog, and I manage to find plenty of information about PD medications, and even write some of the script, although there’s still plenty of work to be done.

I’m less fatigued than I was yesterday afternoon, which is a bit of a surprise, given the busy day we had yesterday, but my tremor is more pronounced today – so much so that I self-medicate with a little cannabis this afternoon, which definitely relaxes me and moderates the shaking. My balance and walking are okay. My voice is weak and disappearing from time to time. Muscles are feeling good, dyskinesia and dystonia aren’t feeling too bad.  My mood is okay, too.  On the whole, I’m having a reasonably good day!

We are having a family day today.  My wife decided that she was going to take this week off work and we had planned to spend it on the boat, but the weather forecast has been really grim for the entire week so we decided against that.  So, my wife has been trying to bring the company accounts up to date, and just generally take advantage of a small unexpected lull in work.  When her eldest son’s fiancee asked her if we were available to look after or granddaughter for the day, we decided to take her out to Wroxham Barns for the day and invited my wife’s mother,  her youngest son’s fiancee and our youngest granddaughter to join us.

We are up, have had tea/coffee, walked the dog, eaten breakfast and are on our way to Hevingham (to pick up our granddaughter) by 8.45am, which is pretty incredible given that my wife had another restless night (and, therefore, so did I).

We get to Wroxham Barns by 10.30am and spend an exhausting 3 hours chasing around after our turbocharged 22 month old granddaughter – feeding a variety of farmyard animals including cows, goats and sheep, and having lots of fun in the soft play area.  Our 2.5 month old granddaughter is much less work (at the moment).  By the time we return home, I’m not the only one that feels the need to have a lie down!

Fatigue almost overcomes me, but I’m otherwise having a really good day, symptom-wise – my tremor is there, but definitely bearable, as are dyskinesia and dystonia.  My balance is an improvement on the last couple of days, and my walking (although definitely wooden) isn’t an issue, either.  Muscular weakness and stiffness aren’t posing any problems, and even my voice isn’t too bad.

My wife had a bad night last night, so my night felt disturbed as well (although my Fitbit tells me it wasn’t as bad as I think it was).

It is the funeral of my next door neighbour today, so my wife is taking the afternoon off work.  We head off to Cromer crematorium at lunchtime, for the service at 2pm.  We are two of only a dozen mourners – it seems so sad to me that a man can live to the ripe old age of 87, have lived for about 25 years in a small close-knit community (of which he used to be an active member) and yet have only 12 people turn up to see him on his way…   There was a small wake held at The Vernon Arms after the funeral, and we all raised a glass (or three) to him, and had a bite to eat.

By the time we returned home, we were both slightly inebriated and no longer wanted our evening meal.  We decide to have early baths, watch an episode (or two) of Episodes on Netflix, and grab an early night.

I’m having a little trouble in getting things done (again) – I have a few things that I need to get done, but at the end of the day my list isn’t any shorter.

My balance is still a bit off – its not so bad that I’m falling over, but I notice that I’m having to catch myself much more frequently.  Tremor is still being a bit of a nuisance in my left leg, and dyskinesia in my right arm is almost catching me out from time to time – most notably when I’m eating or when I try to take a sip of my drink.

I spend most of my day responding to e-mail and social media messages, and trying to get my head around how to use Reddit.  I also spend a disproportionate amount of time looking online for a replacement marine battery for our boat, but by the end of the day I still haven’t placed an order – something I really have to sort out tomorrow, now.

I manage to give the kitchen a brief tidy up before my wife gets home from work, but I give the vacuuming a miss today.

We are in the process of binge-watching Episodes on Netflix, so this evening we indulge in another couple of episodes of Episodes before getting a reasonably early night.

I’m slightly more stressed today than I was yesterday – my wife is getting on with the tiling in the bathroom, and I’m just lounging around downstairs.  I occupy myself with email and social media, occasionally breaking off to cut a tile for my wife with our electric tile cutter (just to make me feel that I am doing something useful).

I take the dog for a couple of stumbles around the field by the village hall (my balance is still a bit dodgy today, although I’m still not actually falling over – I’m thankful for small mercies) and pay a visit to our allotment where I harvest some more mis-shapen carrots, a few beetroot, a couple of courgettes (one of which is doing a pretty good impersonation of a marrow) and a bag full of spinach.

My tremor is breaking through in my left leg again, as if I hadn’t increased the voltage on my neurostimulator just a few days ago.  My right sided tremor is fairly well under control still, so perhaps I’ll try another increase to my left side a little later in the week.  I’m struggling a little with energy (I don’t really have any at the moment) and my voice (which is very weak, and fails me completely about 50% of the time).  I think the time is drawing near for a tune-up at the NHNN, perhaps different settings will improve things for me…

I forgot to turn my neurostimulator down (again) last night, but I slept fine – my brain must be getting used to the latest settings.  I’m still feeling more positive (and a lot less grumpy) than I was just a few days ago, but I can’t say I’m particularly motivated to achieve anything at the moment.  Normally this would stress me out, especially at the weekend when I feel more obliged to do stuff (because my wife is at home and doing stuff), but mild anxiety is as bad as it got today.

I have a number of emails and messages that I have received over the last couple of days, and I really need to respond to them, so I spend this morning doing just that.

I also post links to my latest vlog on Twitter and Instagram, and then attempt to help my wife (who is doing the accounts for her soft furnishing business) by locating (and printing) all of the company bank statements for last year – big deal, huh?

I’m ashamed to say that that’s all I’ve done today, apart from taking the dog for her second walk of the day (my wife took her for her first one).

My balance has been a bit off today (and yesterday evening – I noticed that I was clinging on to the shopping trolley more than usual when we went to Lidl for our weekly grocery shop), and my walking is slightly more erratic. Other than that, my symptoms appear to be reasonably stable.

I slept a little better last night, even though I forgot to turn my neurostimulator down when I went to bed.  I was thrashing around in my sleep (a little bit) but nothing like the previous night.

I’m feeling a little better mentally; not so stressed as I have been feeling, and I feel as though I could actually achieve something today – which is just as well, because I have a vlog to make!

I take the dog for her morning walk, and then get on with researching and scripting my vlog.

I’m using a new (to me) camera today, so I’m taking longer than usual to make sure that it its properly set up – I don’t want to have to film myself twice!  My voice is a little better than it has been for the last couple of weeks, and filming goes fairly smoothly (for a change) without too many re-takes.

I transfer the raw video to my MacBook, and by the time my wife returns from work I have finished the editing (in spite of some tremor that made things a little more tricky than they should have been), uploaded the finished video to my YouTube channel, published it and posted links to it on Facebook and various Parkinson’s disease forums.  I feel that I have achieved!

I didn’t sleep particularly well.  My new neurostimulator settings aggravated my dyskinesia, and I was aware that I was thrashing around in my sleep somewhat.  I’ll have to remember to turn the stimulation down when I go to bed in future.

I’m still feeling out of sorts this morning. My mood hasn’t improved (as far as I can tell).  I have some tremor in my left leg today, in spite of increasing my device settings yesterday – hopefully it’ll settle down as the day goes on.

I have a dental appointment at 11.30am to glue back the crown that I managed to dislodge earlier this week. I’m not nervous about having dental work done (when you’ve had as much dental work done as I have, you become very blasé about it) but my tremor is going wild in my left leg the whole time I’m in the dentists chair, to the extent that the dental nurse asked me (on 2 occasions) if I was okay.  Anyway, my smile is now restored to its former glory, although my wife insisted that this week’s vlog had my gap-toothed grin at the end of it, so I filmed that before I left for my appointment!

My afternoon is taken up with researching the subject of this week’s vlog, which is about the early signs of Parkinson’s disease.  I don’t make much progress with the script, though – so that’s a task for tomorrow morning…

Yesterday was a good day, symptom-wise.  Today is a bad day.  Parkinson’s is like that – you never know from day to day, from hour to hour, from minute to minute even, just what it’s going to throw at you.  I thought that my mood and motivation were improved following the addition of a couple of tablespoons of coconut oil to my diet, but the way I’m feeling today kind of blows that out of the water, so I guess any improvement that I felt was imagined, or a result of the placebo effect.  I’m feeling completely exhausted, fighting off sleep again, and also grumpy, stressed and completely unmotivated.  I’m very shaky today too, and I can’t exactly blame it on strenuous activity over the past few days (because there hasn’t been any), so I decide to increase the stimulation delivered by my DBS.  I increase the voltage on both sides of my neurostimulator by 0.1 volt (so I’m now receiving 2.7 volts on my left side, and 2.4 volts on my right side).  Immediately my tremor is reduced, but I notice a significant increase in the volume of my tinnitus.  It seems that everything has a price – I just hope that dyskinesia doesn’t increase as well, or my voice get any weaker and indistinct!

I try to motivate myself to do a little more editing of my neighbour’s safari holiday video, and I’m successful (to a degree) – I manage to do about an hour of editing before tiring of it.

The dog motivates me to take her for her 2 walks today, and these are the only times that I leave the house.  I manage to motivate myself to give the kitchen a bit of a tidy and to vacuum downstairs before my wife returns home from work, principally so that I have something else to write about – so this blog does have a positive effect on my life!

I managed to dislodge a dental crown from one of my front teeth last night – it pinged off while I was flossing between my teeth, flew across the bathroom and landed in the (thankfully recently flushed) toilet.  I hesitated for just a nanosecond before plunging my hand in to retrieve it – it would cost over £200 to have a replacement made!  My wife thought that it was highly amusing, bursting into laughter every time I opened my mouth.  So, my first task of the day was to call the dentist and make an emergency appointment to have the crown glued back on.  No emergency appointments were available, so I was put on the list of people waiting for a cancellation.  I got lucky, and received a call from the dental surgery this afternoon, offering me a cancellation on Thursday morning.   At least it’ll be keeping my wife amused for a couple of days!

I am almost overcome with fatigue this afternoon – not sure why – I haven’t done anything strenuous and I’ve been sleeping well.  I almost lost the battle to remain awake, but managed to revive myself slightly by taking the dog for a wander.  All of my other symptoms are manageable – I’m having a good day!

I intended to continue with editing my neighbours safari holiday video this afternoon, but in reality don’t manage to achieve very much.  Never mind, there’s always tomorrow.

I’m still lacking energy today, so I don’t actually do very much.   I have a number of YouTube comments on my latest vlog, so I spend a large slice of the morning responding to them.  That’s about as energetic as I want to get at the moment!  I take the dog out for her usual walks, of course.  My voice is still very weak, and my muscular weakness and stiffness is fairly uncomfortable at times.  My balance and walking are slightly better than they were yesterday.  My tremor is pretty much the same.

I receive a phone call from the solicitor who is sorting out the estate of my recently deceased next door neighbour – she wants to visit my neighbour’s property and make sure that she has all of the paperwork that she requires to apply for probate, so we make an appointment for this afternoon and I spend an hour or so before she arrives searching through my neighbours drawers and cupboards and sorting through a mountain of mail, making sure that we won’t be overlooking anything important.

The solicitor’s visit passes without incident (although I’m extremely conscious of my weak voice) and then I take the dog for her second walk of the day.  I have a brief tidy up of the kitchen and then vacuum downstairs before my wife arrives home from work, and that’s my day done…

My wife is intent on making some progress with tiling the bathroom walls today, and I’m really not feeling up to it – so I resign myself to watching my wife at work.

It’s difficult to put my finger on how I am feeling – I really want to finish off the bathroom (and the kitchen), but I cannot summon up the energy and enthusiasm to achieve it, even though the fact that I’m not doing it (and my wife is) is stressing me out.  My tremor is a little better today, although it is still present in my left leg.  Muscular pain (due to weakness and stiffness) appears to be taking the day off, which is most welcome.  My voice remains incredibly weak, disappearing halfway through every sentence I speak – very frustrating!  My walking is still fairly stilted, and my balance isn’t great, but I’m used to it being this way now…

I take the dog for her afternoon walk (my wife took her out this morning), make a ratatouille style dish with a large courgette/small marrow from our allotment and then prepare a ham and cheese omelette to go with it for our dinner – my progress is painfully slow compared to how I was before Parkinson’s, but at least I have achieved something today.

My wife and I are babysitting our youngest granddaughter today, so we’re up at a reasonable time (although I do manage a little bit of a lie-in), and have cups of tea/coffee and a Nutriblast before departing for Hevingham.

My wife spends several hours cooing at the baby while I sit and try to catch up on the news online.

We leave Hevingham late afternoon to go to our boat at Wayford Bridge.  We need to take 2 of the boat batteries home to give them a thorough charging – we intend to spend a few days on the boat in the next couple of weeks, and the last thing we want is to run out of power.

Whilst we are nearby, we drop in to visit my mum in Stalham.  She had a strange turn this week and ended up being admitted to the Norfolk and Norwich Hospital for 3 days. They don’t really know what caused her to be unwell, so it has been put down as a Parkinson’s related incident.  She seems bright enough, and her voice is stronger than last weekend when we visited her, but she does get a little confused from time to time and she appeared to be hallucinating also.  It makes me wonder about what the future holds for me – something that I prefer not to think about too much…

I’m running behind schedule again this Friday.  I did do some research for the script for my weekly vlog yesterday, but I didn’t actually write anything down.  I have this morning set aside for writing the script but no sooner have I made a start on it than my wife calls me on FaceTime to tell me that she has to take the dog to the vet this lunchtime for her annual jabs, but there’s a slight problem – she forgot to take the dog with her this morning!  So, I take the dog over to Hevingham and lose an hour of script writing time.

I return to Southrepps and get on with researching the subject of my vlog (personality changes in Parkinson’s Disease and deep brain stimulation) and write the script.  It’s such a big subject that I can’t really do it justice in a 5 minute video, but I do my best.  Filming myself is a bit of problem today – my voice is the weakest it has ever been, and I really struggle to maintain volume and clarity of speech, having many, many takes before I get something that I’m even remotely happy with.

I load the footage onto my MacBook and edit it as quickly as my tremor will permit – luckily it isn’t too bad in my right side today.

I’m working to quite a tight schedule today, because we are going to visit one of my wife’s friends in Sea Palling this evening, so I need to have it edited, uploaded and published before 7pm.  This wouldn’t normally be a problem, but what with losing an hour this morning and having so much trouble with filming, it’s going to be a close run thing.  In the event, I manage to finish just before 7pm, but posting links to it on social media will have to wait for another day.

I thought that I would be feeling more energised by now – after all, the physical work that I performed when cleaning the boat was 4 days ago now.  I suppose I’ve had a relapse because of the work I did yesterday, sorting through my neighbours personal paperwork.  I never thought I’d see the day when I’d say I was physically exhausted from sorting through a pile of paperwork!

I do very (and I do mean “very”) little today, although I do manage to take the dog for her 2 walks, package up and post some goods that I sold through eBay (and have a lengthy conversation with the postmaster about his boat), and run the vacuum around downstairs.  Other than that, I spend the rest of my day checking email and social media messages, and also doing some research for my weekly vlog, which I’m going to be filming tomorrow.

Aside from fatigue, the only symptom that is bugging me is my voice, which sounds (to my ears) extremely weak and husky – and that is only a real nuisance when I get a couple of phone calls this afternoon. My tremor is still there in my left leg, but it seems less than it was yesterday.  Muscular weakness and stiffness are quite uncomfortable, but this would be more of a problem if I was actually trying to do something physical (which I’m not!).

My wife arrives home, prepares our evening meal, and then we settle down in front of the telly for another episode of Luther on Netflix.

I have to continue going through my neighbours personal paperwork today (he is recently deceased, and his solicitor requires his birth certificate and any other official documents of note).  I’m really not looking forward to it – I hate sorting out my own paperwork, never mind someone else’s!

First things first.  The dog needs her first walk of the day, and I have two mugs of tea that require drinking.  So, I drink my tea, walk the dog and listen to PopMaster before going next door to sift through a small mountain of paper.  I find his birth certificate (hooray!) and some folders filled with share certificates and Premium Bonds which should make somebody happy.  I phone the solicitor’s office to let them know.

Left sided tremor is still bugging me, but I’m going to wait until in fully recovered from the exertions of the weekend before making any adjustments to my device.  Other than that, my symptoms are pretty much as they have been for the past couple of days.  I’m still not overflowing with energy, but at least I am getting a few bits and bobs sorted out, so I’m not completely without motivation.  I pay another visit to the allotment this afternoon (after taking the dog for her second walk of the day) and harvest another courgette, some extremely oddly shaped carrots, a couple of beetroot, some purple French beans and some spinach.  I also tidy up and vacuum downstairs before my wife gets home from work.

I had a really good nights sleep last night – 7 hours uninterrupted!  I’m still feeling very fatigued, but its a huge improvement on yesterday.

I take the dog out for her morning walk before the weather changes – it’s fairly bright this morning, but rain is forecast for later on in the day.  By the time I have replied to a couple of emails and several social media messages, the sky is grey and threatening. Half an hour later it’s pouring with rain, and it doesn’t look like it’s going to stop any time soon.

I need to provide some information to the solicitor who is dealing with the affairs of my recently deceased next door neighbour, so I make a start on going through the piles of personal papers in his house.  I haven’t come across the required birth certificate yet, so will do some more searching tomorrow.

My tremor is much more under control today, only breaking through in my left leg occasionally. My voice is about the same as yesterday (weak), but I generally don’t need to use it too much during the day.  Muscular weakness and stiffness is causing some discomfort in my arms, but I self-medicate with little cannabis mid-afternoon, and that helps.  Dystonia and dyskinesia are both tolerable.  I’m still very lacking in energy, but I’m getting used to the fact that some minor exertion takes me 2 or 3 days to recover from.  My mood and motivation seem okay, it’s a lack of energy that is stopping me doing stuff.

The dog wants her afternoon walk, until she sees the rain.  Suddenly she’s a good deal less keen.  Funny, that…  She takes a quick couple of minutes in the garden to do her business, and rushes back into the house.  Can’t say I blame her.

I have a tidy up in the kitchen just before my wife arrives home from work. We eat dinner and then head over to Spixworth to visit my wife’s youngest brother and family.  It’s my wife’s niece’s 15th birthday today, and we want to give her her present.

I’m absolutely shattered today, fighting off sleep almost as soon as I have got dressed and gone downstairs.  I guess it’s because I scrubbed the boat for 20 minutes yesterday, but it seems like a lot of payback for very little effort.

I have some tremor breaking through on both sides, but it’s bearable.  Voice is fairly weak, balance is okay, walking is a little wooden, muscular weakness and stiffness is moderately uncomfortable, dystonia isn’t too bad, dyskinesia is threatening to spill my drink when I pick it up from the table.  My energy levels are down the toilet.

I have quite a lot of email and social media messages that have accumulated whilst we were on the boat over the weekend, so I busy myself sorting through them and replying to those that require replies.

The dog drags me out for her two walks, which at least gets me out of the house, and I pay a brief visit to the allotment to harvest more courgettes before they become marrows.

I have a quick tidy around downstairs and vacuum up the dog hair before my wife arrives home from work.  An early night is a definite requirement!

I’m awake around 6.45am, but I’m in no hurry to get up.  At 8.30am I get dressed and join the dog in the main cabin, leaving my wife to catch up on some much needed sleep.  I always sleep well on the boat, but I wake up in discomfort.  I think that we have such a comfortable mattress at home that I really notice it when I sleep elsewhere.  And then there’s the fact that the bed on the boat is only 6 feet long, and I’m a couple of inches longer than that!

My wife wakes soon after, and we decide (after breakfast) to give the outside of the boat a bit of a scrub (it desperately needs it!).  After about 20 minutes I’m knackered, but my wife is made of sterner stuff and continues for quite some time after I give up.

I’m much more shaky today, tremor is breaking through on both sides, and I’m thinking that I may possibly be approaching the time for another visit to the National Hospital for Neurology and Neurosurgery in London to have my DBS adjusted.  My voice is still weak and husky – I’d be interested to see if that can be improved by re-programming my neurostimulator.  I’m feeling quite motivated, but a severe lack of energy is impacting on my ability to get things done.

At 2pm we decide to head back up the river to Wayford Bridge, moor the boat up and head over to Stalham (about 3 miles by road) to visit my mum.  She’s struggling with her speech (again) today but, aside from that, is having a much better day than when we last saw her.

Homeward bound, we unload the car and my wife clears it all away while I sit and watch.

We are going to spend some time on our boat this weekend, so this morning my wife is sorting out what we need to take with us, while I’m doing my usual e-mail and social media message checking.

We’re ready to leave the house shortly after lunchtime, having loaded my wife’s car with bags full of bedding, clothes and provisions, and head off to Wayford Bridge (where our boat is moored), stopping off at Lidl in North Walsham en-route.

The boat is in a bit of a state, because we haven’t really used it this year (and last year was a bit of a write-off, what with my operation and recovery), so there is a fair bit of cleaning and tidying to be done.  I also have to fit a fridge that we got from my wife’s parents earlier this year (our old boat fridge gave up the ghost last year).  We cruise down the river for half an hour or so, and moor up at Barton Turf for the night.  My wife cleans, I fit the fridge (which doesn’t appear to work!).

Eventually, cleanliness and organisation reach acceptable levels and we can chill out for a while.

I’m feeling a little bit more “with it” this morning – less shaky and less fatigued.

My elderly next door neighbour passed away last night, so today I am helping to remove his belongings from his room at the care home in Cromer.  We bag up all of his clothes and drop them into a charity shop in the town, and then pop into see his solicitor to ensure that she knows what has happened.

It’s after 12.30pm by the time I get back home, and my schedule for the day is completely down the tubes.  I get cracking on writing the script for my weekly vlog – luckily it is a subject that I know well (living with an invisible illness) so I don’t have to spend precious time researching it.  I finish my scribblings, load it into the teleprompter app on my iPad and rehearse it a couple of times before filming myself. I thought I was going to have real problems today – my voice was very weak and was strangling my sentences when I was rehearsing the script, but I concentrate on my breathing and timing and manage to get it filmed with only a couple of re-takes. I load the footage onto my MacBook, do a quick editing job, then upload the finished video to my YouTube channel and publish it.

I’m feeling incredibly tired (again) today, even though we went to bed at a reasonable time last night, and I slept well.  I see another day of inactivity stretching ahead of me, but it’s something I am getting used to (unfortunately).

At least the dog is here, and so that gets me out of the house twice a day.   I sit on the sofa with my iPad, checking e-mails and social media messages while I drink my morning cups of tea and my Nutriblast and listen to PopMaster.  I’m fairly shaky again this morning, but I think I’m a little better than I was yesterday.  My voice is slightly stronger, as well.  My arm muscles are still aching, but I’ll live.  I’m struggling a bit with mood and motivation, but I’m putting that down to general fatigue.

I pay a visit to the allotment when I take the dog for her afternoon walk, harvesting a courgette (that was doing a fair impression of a marrow) and a few handfuls of spinach (for tomorrow’s Nutriblast).

I prepare a ratatouille type dish with some courgettes from the allotment, and then run the vacuum around downstairs.  And that’s me done for the day!

I woke to my alarm at 7am having had just under 4 hours of sleep.  I managed to snooze (on and off) until 9,30am when I got up and  got dressed.  The house seems quiet this morning without having the dog around – she’s still at my wife’s youngest son’s house, and my wife will bring her back this evening when she returns from work.

I’m very tired, and do exceedingly little today (on instruction from my wife – she knows how late nights affect my energy levels!), mostly reading the news online on The Metro website, responding to a couple of emails and a rash of comments on my YouTube channel.  I manage to find the energy (and motivation) to tidy up a little and vacuum downstairs before my wife arrives home (with the dog, who seems quite pleased to see me).

I also carry out a couple of tasks on behalf of my elderly neighbour, who is currently very ill in a care home in Cromer, and is not expected to survive for more than a few more days.  So, I research the conditions for his stated wish to donate his body for research, and contact the solicitors who hold his Will in order that they are prepared to act as his executors.

I am quite shaky today, but I was expecting to be so, following our long day (and extremely late night) yesterday.  Voice is (still) weak and husky, muscles aching, dyskinesia rearing its ugly head from time to time…  I self-medicate (cannabis) late in the afternoon, and that relaxes me somewhat.

When my wife gets home, we visit my neighbour in the care home but, to be honest, I think he was unaware of our presence.  He reacted to the sounds of our voices and my wife holding his hand, but he was being medicated with morphine, so did not actually regain consciousness while we were there.  Very sad to see him like that.

We are going to a gig in London this evening, so that means that most of the day is taken up with preparing to travel to London, and actually travelling there (and back).

My wife goes to work in the morning, and I busy myself making sure that I am ready to leave as soon as she gets back home – walking the dog, ordering Calor Gas refills (something I’ve been trying to achieve for the last couple of weeks), printing out details of the parking space that I have booked through Justpark, making sure that I have the tickets to hand, having a shave…

My tremor is running riot in my left leg again.  I’m very tempted to increase the stimulation on my device, but am very wary of provoking dyskinesia, which has been on the increase lately.  My voice is fairly weak (still), but apart from that I’m doing just fine.

My wife arrives home, and we leave for Hammersmith, dropping the dog off at my wife’s youngest son’s house on the way.  Our timing is pretty lousy, and we hit rush hour traffic on the outskirts of London, meaning that our journey of just over 130 miles takes us just over 4 and a half hours.  We arrive at the Apollo in plenty of time, however.

Midnight Oil were absolutely fantastic – I have been wanting to see them play for many years, and I wasn’t disappointed.  The gig finishes just after 11pm, and we then burn the midnight oil getting home, arriving back in Southrepps just after 2.30am.  I think I will need a few days to recover!

We can’t seem to get anywhere near our target of getting to bed at 10pm. Last night we failed again (miserably) because we were too engrossed in a program we were watching on Netflix.  I’m feeling fine, though, when I wake up – it is later in the day that it catches up with me (or perhaps it’s just Parkinson’s fatigue, and it makes no difference whether I get to bed early or not – who knows?).

I walk the dog, check my emails, deal with several YouTube messages that have arrived overnight and then catch up with the news online on The Metro website.

My walking still feels very sub-standard, my balance isn’t too bad, my tremor is close to the surface (but better than it has been), my voice is rubbish (husky and disappearing at times), muscular weakness and stiffness is uncomfortable but bearable.

I want to do some work at the allotment this week, so I get the petrol strimmer out of the shed, and make sure that it’ll start after being stored unused for the last 8 months or more.  It does, and I wander up to the allotment and attack some of the overgrowth with it, and run the lawnmower over some of the less unruly areas.  I’m only there for about 30 minutes or so, but I feel that I’m staggering as I walk back home, and I virtually collapse onto the sofa when I get through the door.  Fatigue descends on me like a black cloud, and I feel incredibly tired, weak and feeble – I could actually go to bed (if I had the energy to get up the stairs).  By the time I’ve recovered sufficiently, I decide that I’d better have a bath (I’m covered in bits of strimmed vegetation), and the bath does make me feel a little better.

My wife arrives home from work, we eat dinner and then settle down in front of the telly to watch another episode of the highly addictive Luther on Netflix.

Another late night (half past midnight), another good night’s sleep, another day when I’m feeling fatigued. To be fair, I’m not feeling as exhausted as I was yesterday, but I’m not feeling great, either.

My wife continues tiling the bathroom, and I do a little bit of housework so that I don’t feel completely useless.  I dust and vacuum our bedroom, and vacuum the stairs and the lounge – a simple enough task that leaves me panting for breath and drenched in sweat.

I sit on the sofa in the lounge, checking and replying to emails and messages on social media while I recover from my exertions.

My muscles aren’t quite so painful as they were yesterday, for which I’m extremely grateful. Tremor is still significant in my left leg, but my feeling is that it is less significant today.  My walking is still fairly pants, but at least I can walk!

My wife finishes work on the bathroom for the day, and we go out to the local garden centre in Overstrand to get a sack of food for the dog.  When were get back to Southrepps we take the dog for her afternoon walk and then pay a visit to the allotment to pull up a few weeds and harvest some spinach, carrot (singular) and a couple of beetroot.  Cue aching muscles, shortness of breath and profuse perspiration!

I had a little bit of a late night last night (midnight), but I slept well and didn’t get out of bed until almost 9.30am, so you wouldn’t think I would be feeling so completely exhausted today – but I am.

My wife wants to get on with the tiling in the bathroom (which I was supposed to finish by my birthday on 15th May, and which I have made absolutely no progress with in the weeks since my birthday), and I just feel unable to help her.   I consider going to the allotment to do some pottering around, just to get me out of the house and doing something, but I realise that I haven’t even got the energy to do that.

I do manage to take the dog out for a couple of stumbles around the village hall field (my walking is still not great), but that’s about the extent of my efforts today.

I have a fair bit of tremor in my left side again, and muscle weakness in my arms, combined with muscular tension and cramping, is making me so uncomfortable that I self-medicate with some cannabis this afternoon – its the first time in many months that I have felt the need to do so during the day.

I rustle up a ratatouille style vegetable dish (with some of our outsized courgettes from the allotment) to go with the pasta bake that we are having for dinner, and manage to run the vacuum cleaner around downstairs.

After dinner, we drive out to Lidl in North Walsham to get in some emergency supplies (beer and snacks), before sitting in front of the telly for the evening.

Today is Friday, and Friday is a busy day for me.  I need to write a script for my weekly vlog, film myself, edit the footage, upload the finished video to my YouTube channel and publish it to the world.  I have already chosen the subject (cannabis as a medicine), so I just need to get on with it.  I’m only about half way through writing the script when there’s a knock at the door – It’s one of my neighbours, wanting to know if I would accompany him to visit my next door neighbour, who is currently in a care home in Cromer.  I am feeling rather guilty that I haven’t been to see him in over 2 months, so I agree to go.

My elderly next door neighbour is looking weak and unwell, and has been refusing food and drink (because, basically, he tells us that he just wants to die) but, following a pep talk from us, he agrees to have something to eat, and he is looking a little happier by the time we leave.

That little visit has thrown my Friday schedule into complete disarray, but I feel less guilty now that I have been to see him.

I finish writing the script, film myself (without too many retakes), and am just completing the task of editing my video when my wife gets home from work – I’m feeling pretty impressed with myself for getting this far, given that the visit to the care home took a 2 hour chunk out of the day.

I upload my vlog while we are eating our dinner, and then publish it and post links on Facebook, Twitter and Instagram while my wife is walking the dog (again – she didn’t miss out because I visited my neighbour, don’t worry!).

It has stopped raining this morning, which is most welcome.  It’s a fairly dull, grey day, though, and I pass it in much the same way as I did yesterday – checking e-mail and social media messages (after the first dog walk of the day), and reading The Metro online for the day’s news.

I intend doing some more editing of my neighbour’s safari holiday video this afternoon, but want to check that he’s happy with what I have done so far – so, I take my MacBook round to his house and we sit in the kitchen drinking tea and reviewing the videos (all 7 of them) that I have produced so far.  He proclaims himself “more than happy” with my work so far, so I crack on with the 8th video this afternoon, only taking a quick half hour break to take the dog for her afternoon walk.

I am extremely shaky again today, mainly on my left side, and so my editing is a little on the slow side (again).  I do manage to finish the 8th video before I clear up, make some sort of courgette, tomato and garlic concoction (to go with the sea bass we are going to have with dinner), and vacuum up the dog hair from downstairs.  My dyskinesia is still being a bit of a pain, but I’ve managed to avoid throwing my drinks over myself (or the floor).   Walking is still not to good, but my balance seems relatively okay.  Muscular stiffness and weakness are not a major feature at the moment, which is a relief.  Anxiety is definitely a problem, though, so I treat that with some cannabis…

I wake just after 5am to the sound of rain gently hammering on the bedroom window.  Joy!  I go back to sleep (fitfully) until the alarm goes off at 7am, and, even then, can’t be bothered to get up and get dressed until almost 7.30am.  It’s raining steadily and everything outside looks absolutely saturated – it’s a day for being confined to the house, that’s for sure.

Amazingly, there’s a break in the weather just before 10am, and I rush out with the dog for a quick walk around the village hall field – it hasn’t actually stopped raining, just reduced to a fine drizzle.

I spend the rest of the morning checking emails and messages on social media, and then catching up on the news by reading The Metro online.

The afternoon’s task is to continue editing my neighbour’s safari holiday video, and I manage to complete the editing of 2 more days, which is impressive when you consider the tremor I have at the moment.  I have to say that it has put me off ever going on a safari holiday – there’s only so many elephants and giraffes you need to see, and although I have enjoyed seeing all of the wildlife whilst editing the video, I think it would lose its shine after 3 or 4 days.

I take the dog for her afternoon walk during another brief period of fine drizzle, and drop by the allotment to check on things.  Everything is looking fairly good, thanks to the recent rainfall, and I harvest another courgette before it turns into a marrow.

Aside from my tremor (which is mildly irritating), the only symptoms that are bothering me are my walking (which ain’t great) and my voice (when my wife gets home from work, and I want to talk to her).  I self-medicate (a beer and some cannabis) after dinner.

I slept well, thanks to the cannabis I had yesterday evening (we missed our target of being in bed by 10pm, but only by about 20 minutes).

I still have significant tremor breaking through, particularly in my left leg, so I may have to make adjustments to my neurostimulator if it doesn’t improve by the weekend.  My dyskinesia has gone up a notch, as well – I noticed it yesterday, but it has definitely been worse today, and I’ve almost spilt my drink on several occasions.  My voice isn’t too bad, my balance is reasonable but my walking is quite wooden.   Muscular weakness and stiffness aren’t giving me too many problems.  I’m feeling fairly exhausted at the moment, and find myself fighting off sleep this afternoon.

It’s a bit of a grey day in Southrepps today, and it has been threatening rain all morning.  I am just about to go down to the allotment to cut the grass, when the heavens open.  It rains heavily all afternoon, and even the dog doesn’t want to go out in it.

I spend the afternoon editing my neighbours safari holiday video (made much more difficult by my tremor and dyskinesia) – I have now finished the first 5 days of it, but I hardly dare look to see how many more days are still remaining!

It’s getting on for 6pm and it’s still pouring with rain, so I put a coat on, find an umbrella and drag the dog out for a walk (against her wishes).

Awake at just after 6am again. I get up just before 7.30am, get dressed and go downstairs to feed the dog and put the kettle on.

I’m going to a funeral today. One of the pillars of the Southrepps community died earlier this month, and today there is a memorial service at the local crematorium.  My wife goes off to work, so I walk the dog and then dig out a pair of black trousers, a black tie and a pair of black shoes.

I’m being interviewed by Cannabis Health Radio this afternoon, and there’s an email in my inbox containing a list of questions that they are going to ask me.  I spend the morning scripting my answers to the questions so that I’m not stuck for words when I’m put on the spot – I have some mild cognitive impairment (as a consequence of either Parkinson’s Disease progression, or the Deep Brain Stimulation surgery) that means my flow of words is affected.

I drive to the crematorium in Cromer in plenty of time for the service.  It’s lucky that I did, because it seems that everyone else has had the same idea – the car park is nearly full, and I only just manage to get a seat in the chapel.

An hour later and it’s all over and everyone is attending the wake in The Vernon Arms.  I pop in there for a swift pint of Abbot Ale, but return home before the food is served – I’m not feeling up to dealing with crowds.

I finish scripting my answers to the interview questions, and then it’s time for the interview – time flies when you’re having fun!

The interview goes really well, and I’m looking forward to hearing it when it’s been edited.  My tremor, which has been breaking through on my left side all day, has an absolute field day during the interview, making my left leg jump around constantly, so I guess that’s evidence of the stress I experience when I feel put on the spot.  It calms down again once the interview is over, but I do give it a little help in the way of some cannabis – seems appropriate!

My wife and I are going out to lunch with an ex-colleague of hers, so this morning we are trying to get a few little jobs done around the house before we have to leave to drive over to Sea Palling.

Dog walk, ironing, clean the bathroom, make ourselves look presentable, make a dessert to take with us, buy some beer, a bottle of wine and some flowers…

I contemplate a little self-medication (cannabis) before we depart, but decide against it – my tremor is pretty well controlled today, and I’m feeling okay.

The dog somehow knows that we are going out (and that she is staying behind) and has a resigned expression on her face.

We have a very pleasant roast dinner, and a good old chinwag, and we are home again before 6pm.  The dog is pleased to see us.  We take her for a run around the field, and then visit the allotment to harvest some vegetables.  The courgettes have gone mad – overnight they have become little marrows.  We return home with a bucket full of large courgettes/baby marrows and a large quantity of broad beans.

Determination pays off this evening, and we actually manage to get to bed at 10pm – I was beginning to think it was an unattainable goal!

We didn’t get to bed until midnight last night.  The target was 10pm, so I think we can consider that to be a major fail.  In spite of the late night, I’m wide awake just after 6am, although I stay lying in bed until 8am.

My wife and I are looking after our latest granddaughter for a couple of hours this morning, so we need to be in Hevingham at 9am.  We have a hasty cup of tea/coffee, pack the dog into the car and we’re out of the house by 8.40am.

We return to Southrepps for 1pm – just in time to meet up with my wife’s father and brother, who are coming over to have a pub lunch and a few beers with us in The Vernon Arms this afternoon.

I have lot of tremor in my left leg this morning, so I decide to try and calm it down a little by self-medicating (cannabis), and that has the desired effect.  My voice, although not too bad, is weaker than it was yesterday, so I find I’m doing more listening than talking.  My balance is really not very good, and my walking is quite unsteady, but not to worry – I’ll just blame it on the beer.  By mid-afternoon I’m getting tired, and my voice is slurring like I’m a drunkard (but I’m not drunk, honestly!).

After a rather splendid burger and several pints  of Abbot Ale, we retire to our cottage to continue chatting and to watch a DVD (whilst chomping on Twiglets and chilli peanuts).

We fail to hit our self imposed curfew of 10pm (again), but that’s not entirely our fault – you can’t be rude to your in-laws and send them packing, can you?

The aim was to be in bed by 10pm.  Total failure (so far) this week, but did manage to get there by 10.15pm, so… goal almost achieved!  We will make another attempt tonight.

I started the script for my weekly vlog yesterday, but it is far from complete, so that’s my first task of the day (after walking the dog).  I finish writing my script around 12pm, load it into the teleprompter app on my iPad and have a quick rehearsal.  My vlog is about my voice, and the effect that Parkinson’s Disease and Deep Brain Stimulation have upon it.  I was planning on using some “duff” takes to demonstrate how my voice lets me down on a daily basis, but today I am not having any problems – typical!  So, I manage to film myself in about half of the time that it normally takes me, which I’d normally be really pleased about!

I load the footage onto my MacBook and set about editing it.  My tremor makes the editing a bit of a challenge, but I manage to finish the editing in a little over 90 minutes, which is pretty good going.

By the time my wife returns from work, I have uploaded the video to my YouTube channel, published it, and posted links to it on Facebook, Twitter and Instagram as well as to the various Parkinson’s forums that I subscribe to.  Now I can relax (and, hopefully, get an early night).

We were moderately successful in getting an early night last night.  We were a whole half an hour earlier in getting to bed – my aim was to be in bed by 10pm; we managed 10.30pm.  Another effort to hit my original target will be made tonight!

I was aiming to script and film my weekly vlog today, so that I wouldn’t be under so much pressure tomorrow, but I failed miserably.  By the time I had had my morning cuppas and Nutriblast, walked the dog, listened to PopMaster, read The Metro online, checked my email and scanned my Facebook, Twitter and Instagram accounts, the morning has simply disappeared.

I start writing the script for my vlog around lunchtime – the subject matter is the effect of Parkinson’s Disease and Deep Brain Stimulation upon speech, so I have spent a lot of time over the last day or two just thinking about my voice (or lack of).  I take a bit of a break to walk the dog, and then drive to Lidl in North Walsham for some essential supplies (beer and vegetables).  When I get back home, I prepare the evening meal – nothing too involved, but it just means that my wife won’t have to do it (for a change) when she gets through the door.

My tremor is breaking through (both sides) from time to time, but it’s bearable.  I’m still aching from my gardening stint on Tuesday, and my balance and walking aren’t so good today.  My mood is still somewhere between motivated and complete indifference, so better than it has been, but not as good as I would like.  I have a number of things that I really need to do, and I’ve been putting them off – now I’m feeling under pressure (from myself) because I haven’t done them yet.  I think I’ll write myself a “To Do” list and see if I can make some progress by the end of next week.

I’m still feeling very weary this morning.  I had a good sleep, but we ended up not going to bed until after 11pm again – an early night failure!   My wife and I have the best of intentions, but we are struggling to get to bed at an early hour – we will try again tonight…

My exertions yesterday (in tidying my next door neighbour’s front garden) haven’t helped my energy levels, and I’m aching pretty much everywhere it’s possible to ache.  I’m taking it easy today.

I take the dog out,  and then sit on the sofa with my laptop, responding to emails and messages on social media whilst listening to PopMaster on the radio.  Once again, I find myself fighting off sleep in the middle of the day.

I was considering making a start on the script for my weekly vlog this afternoon, but instead decide to do a little more editing of my neighbour’s safari holiday video that I promised I would do (in return for an HD video camera that he gifted to me).  I take a break just after 4pm, and try to make the house a little more presentable so that my wife doesn’t feel the need to do it as soon as she gets through the door – chucking away some flowers that are well past their best, tidying the kitchen and vacuuming downstairs.

Aside from my muscular aches and pains, my voice is virtually non-existent, and my tremor (although fairly well controlled) is very close to the surface.  Not too bad, all things considered!

Last night’s early night didn’t end up being that early…  We went to see my wife’s father to give him his (belated) Father’s Day card and gifts, and by the time we got back home and got ourselves into bed, it was after 11pm.  We really must try harder!  So, I’m feeling very weary (again) and don’t have a huge amount of energy (or enthusiasm) for getting things done.  By lunchtime I find myself fighting to stay awake, so I decide on being a good neighbour.  Our elderly neighbour has now moved into a care home, and his house is currently in the process of being sold.  His front garden hasn’t been tended in months, and is now so overgrown that it is starting to impede the access to our front door.  I know that he would be horrified if he saw the state of it, so decide to pull up some weeds, cut back his hedge and hollyhocks, and try to make it look a little more presentable.   In doing so, it’ll improve our access as well, so there is a healthy dollop of self-interest in my actions.

2 hours later, and things are looking much better.  I’m on my last legs, mind you…  I think I might have overdone things again.  I take the dog for her afternoon walk (which, for me, is more a stagger than a walk) and then collapse onto the sofa to recover.

Symptoms are fairly well under control today – it’s mainly my walking that is affected, and that’s because I tired myself out doing the gardening.  Hopefully an early night will prevent me from feeling too bad tomorrow.

I’m feeling absolutely shattered today, in spite of an early night and  good night’s sleep.  My wife tells me not to overdo it, as she leaves for work this morning – I think that there’s very little chance of that!  I’m struggling to stay awake by mid-morning, so I take the dog for a wander to see if some fresh air helps (and it does).  I think it’s going to take me a few days to recover from the weekend – my tremor keeps breaking through on both sides, dystonia is pretty uncomfortable in my right foot, my voice is weak, and I’m feeling a distinct lack of energy.  On the plus side, my balance isn’t too bad, my walking is okay, and muscular pain and stiffness isn’t too much of a problem.

The heatwave continues today, but at least there is a gentle breeze to take the edge off it.  I refuse to complain that it’s too hot – we usually spend good money to go on holiday to somewhere as warm as this.

I take a short break from doing nothing to take the dog for her afternoon walk, and then have a quick tidy up and vacuum downstairs before my wife returns from work.  Another early night, methinks!

I didn’t get much sleep last night – we stayed up chatting and drinking until gone 1am, and it was closer to 2am by the time we actually got to bed.  I was awake shortly after 6am and didn’t really succeed in getting back to sleep. It’s Father’s Day today, and my wife and I are invited to a barbecue at her eldest son and his fiancee’s house this afternoon, so we need to leave London before lunchtime, and drive back to Norfolk.

It’s another sweltering day (no breeze, again!).  We leave Hither Green around 11.15am (sunroof open, windows down) and travel back through some fairly heavy London traffic, which clears when we reach the motorway.  We make good time, and are back in Southrepps by 2.30pm (having stopped for McDonald’s, fuel and some barbecue provisions along the way).  I open the Father’s Day cards that have arrived from my 2 children, and text them both to thank them.

My tremor is breaking through on both sides today, probably as a consequence of having so little sleep last night.  By the time we are ready to leave for the barbecue, tiredness has caught up with me and I’m feeling extremely fatigued.  We have a lovely few hours with my wife’s sons, their fiancees and our 2 granddaughters, and I get (Grand)Father’s Day cards and gifts that I really wasn’t expecting!  We get home at a reasonable time, and I’m so tired that my voice is slurring like I’m drunk (and I’m sober!), so we get an early night.

Today we are going to London to visit an old friend of ours, Gerry, who has just turned 75 years old.  He is having a little party this afternoon/evening and has booked The Three Belles as entertainment (particular favourites of his).

It is a blisteringly hot day (by UK standards) – the computer in my car says it is 30.5 degrees centigrade, and there’s scarcely a breath of wind.  It’s unfortunate that the air conditioning in my car has stopped working, so we are cooking gently all the way to Hither Green, in spite of the sunroof being open and the windows being down.

We arrive at the party to find that Gerry is actually Geraldine today – he is in drag, complete with blonde wig, blusher and lipstick.  It’s quite a surprise, I can tell you!  The party goes well, and The Three Belles play 2 sets and go down a storm.  The main thing is that Gerry (Geraldine) has a thoroughly good time (he hasn’t been in the best of health for the last couple of years) and he appreciates everyone having made an effort to travel to his party (even if only one or two are in fancy dress).

It all winds up around 11pm, although one or two of us have a couple more drinks and chatter on until just after 1am!

My wife is taking the dog to work with her today because she taking her to the vet for her annual check-up and vaccinations straight after work.  It feels strange to have a day without the dog.  No need to leave the house for dog walking purposes, so I start my car (just to see if it will start – it hasn’t been driven for a week, and the security system tends to drain the battery) and then take it for a quick blast to Mundesley and back.

I have to finish subtitling my weekly vlog, upload it to my YouTube channel and publish it, which takes me much longer than anticipated due to a number of stupid errors that I made with the subtitles.  Anyway, it;s now published, and I have posted links to it on Facebook, Instagram and Twitter, and emailed Martha Orbach (who is the subject of this week’s video) to let her know it’s available to view.

I have a quick tidy up and run the vacuum cleaner around downstairs before my wife (and the dog) get home.

We have dinner and then drive to Lidl in North Walsham to do some grocery shopping.  I’m feeling very tired again, so it’s another early night for me!

Today I’m going to do my weekly vlog.  I usually do this on a Friday, but this week I’m working a day ahead.  I’m vlogging about the artist, Martha Orbach, who is putting together an animated film about Parkinson’s Disease and Deep Brain Stimulation.  She has now received funding for the majority of the project from The Arts Council, and has to raise the balance herself.  I think she will be doing a valuable job for Parkinson’s awareness, and wanted to help her in any way I could.

I have received various emails from Martha this week – approval of the script that I sent to her, a photo of her for me to use in the video, and scans of some of her artwork (to save me from having to scan them in) so I put all of the images on my MacBook, ready to use when I’m editing my vlog.

I think my voice has been affected by the increased voltage on my left hand side (I turned my neurostimulator up 2 notches last week to try to calm the tremor in my left leg) – it’s been much worse (I think) the last couple of days.  I try putting my device on Group “B” settings (which I use at night, because the level of stimulation is much lower) to see if that would make a difference, but I still had terrible trouble when I was filming myself – I think voice changes don’t happen immediately the settings are changed!

I load the footage onto my MacBook, and have most of the editing done by the time my wife arrives home from work – I’ll finish it off in the morning.

Another day, another attempt to edit my review video!  I think I have everything I need to put the video together now, so I set myself up at the dining room table with my MacBook and get cracking.

Another task that I have underestimated!  I thought I’d be able to churn out a finished product in a couple of hours, but tremor has been breaking through again, making my mouse finger double-click where it ought not be double-clicking, and slowing my pace of work considerably.

I take a break to give the dog a walk, but other than that, all I do today is edit a video.  It’s gone 5pm by the time I’ve finished the edit and loaded it to my YouTube channel.  I just have time to vacuum downstairs and bung a couple of ready-meals in the oven before my wife gets home from work.

I surprise myself and find the energy to walk down to the allotment with my wife after dinner, water the plants and do a bit of weeding.

Another early night required!

I slept reasonably well last night, so it’s a bit of a mystery why I’m feeling so exhausted when I get out of bed this morning.  It’s just as well I’m not planning on doing anything physical today.  I plan on writing the script for my weekly vlog about Martha Orbach, the London artist who watched my Deep Brain Stimulation operation last April, and who is putting together a short animated film about a man with advanced Parkinson’s Disease who has DBS.  She has now received some funding from The Arts Council for the project, but still has to raise about £1,000 to cover costs, so I decided to publicise her crowdfunding page to help her to raise the balance – Parkinson’s awareness is such a worthy cause.  Writing the script takes me much longer than I anticipated, much like most things that I do these days – either I’m getting slower at doing things, or I’m a lousy estimator…

After I emailed a copy of the script to Martha (for approval), I sit down at my MacBook to edit the RSHO review video.  Immediately I have problems – I’m not happy with most of the video that I shot for the first half of the review.  For a start, in one of  the shots I’m wearing a different shirt to the rest of the video – not sure how I managed that one!  And then there are loads of shots where I have inadvertently got the clothes airer in the frame.  I need to have a few re-takes!  So, I set up the camera and tripod once more, making sure that I wear the right shirt and frame the shots correctly this time, and film the duff footage again.  My voice isn’t as bad as it was yesterday, and I don’t have too much trouble getting the shots that I need.  I load the video onto my MacBook, and now i’m ready to edit it.   It’s time for me to tidy up a little and turn the kitchen/dining room back into a kitchen/dining room instead of it being a film studio, so the editing is now a job for tomorrow – I think a pattern is emerging here.

I definitely feel an early night coming on.

I wake early (6.15am) and leap out of bed faster than a very fast thing – I have excruciating cramp in my left leg!

It subsides and I manage to grab another 30 minutes of shut-eye before the alarm goes off.

I’m aching all over this morning, so I guess I overdid it down at the allotment yesterday.  I am going to do something a little more sedentary today – I’m going to script and film the second half of my video review of Real Scientific Hemp Oil.  Even doing that gives me problems – carrying (or, rather, staggering with) the camera and tripod down the stairs almost kills me!  I quickly write script for the second part of the video (the conclusion), load it into the teleprompter app on my iPad and then film myself.  My voice is still pretty weak and I struggle a bit, needing multiple takes to get something that I’m (relatively) happy with.

I stagger (stiffly) around the field by the village hall with the dog (for the second time today) and then clear away all of the filming equipment before loading the raw video footage onto my MacBook for editing.  I had hoped to at least make start on the editing today, but the day has gone and my wife is due home from work any minute, so that’s now a job for tomorrow.

We have a little bit of a lie-in this morning, following our late night of babysitting.  It’s another fine and sunny day, and we decide to spend some time down at the allotment, performing allotment tasks.

So, after drinking tea/coffee, Nutriblasts and walking the dog, we wander down the road to the allotment, trays of seedlings in our hands, and set to work.  I manage to plant out some sweetcorn and aubergine plants, prepare an overgrown bed for planting out some butternut squash seedlings (and plant them out), and weed between the carrots and beetroot before having to call it a day due to exhaustion – about 2 hours work, so a bit better than usual!  I return home to clean myself up and have a sit-down for a while, my wife labours on!

My tremor is still breaking through in my left leg from time to time, in spite of my voltage adjustment yesterday.  My voice is still a little on the weak side, but it doesn’t seem to be any worse than it was yesterday, so I’m relieved that my voltage adjustment doesn’t seem (so far) to have had a detrimental effect.  Dystonia in my right foot is quite uncomfortable, but it seems to be stable and bearable, so I won’t be adjusting my neurostimulator to moderate it because dyskinesia in my right arm is also uncomfortable but stable and bearable – increasing the voltage to improve the dystonia goes hand in hand with increased dyskinesia.

My wife arrives home from the allotment, cooks us a little something for dinner, and then we settle down in front of the telly for the evening.  I’m planning on some self-medication (cannabis), a couple of beers and an early night.

Today is a beautiful sunny day, and the village of Southrepps is host to a wedding, so there are lots of well dressed strangers milling around, and the village hall car park is packed.  My wife returns from walking the dog and tells me that she just spotted the wedding limousine – a shiny new JCB tractor, complete with white ribbon, so it must be a local who’s getting married!

My tremor is still breaking through on my left side, especially in my leg, in spite of all of the rest that I’ve been getting lately, so I decide to make an adjustment to my neurostimulator.  I increase the left hand voltage by 2 clicks (0.1 volts), so now I am receiving 2.6 volts on my left side, and 2.3 volts on my right side.   The tremor is instantly contained, and I’m wishing that I’d made the adjustment days ago.  My voice is still very weak today, and I’m just hoping that the increased voltage won’t have an adverse effect on it.

We are going to Hevingham tonight to babysit for our newest granddaughter, to give my wife’s youngest son and his fiancee a break – they are suffering from sleep deprivation.  We stay until almost 2am and everyone (including our granddaughter) is fast asleep.  So, a late night for my wife and I, and a bit of a lie-in is on the cards for tomorrow (today) morning.

We awaken to political turmoil this morning.  Theresa May took a gamble on being re-elected with an increased majority, and lost!  Even though she says that she is not going to resign, and she plans to form a minority government, I believe (and hope) that it is only a matter of time before we see the end of May.

It’s a beautiful morning here in Southrepps, and it appears that Summer has returned, but by mid-morning the sky is a threatening dark grey, and it isn’t looking much like Summer any more.  I dash out with the dog while the going is good.  By lunchtime we have a thunderstorm and the heavens have opened – just as well it is Friday, and I have my vlog to keep me busy (and indoors!).  I have decided to do an update on my vlog about Mannitol and coconut oil – I have been taking Mannitol (a natural plant sugar used as a food additive) for about 3 months now, and have noticed an improvement in my sense of smell.  I only started taking coconut oil about a week ago, but have definitely had a change in mood and motivation that I am hoping is attributable to it.

I still have a fair amount of tremor breaking through on my left side, and had intended making an adjustment to my neurostimulator today if it hadn’t improved.  As it is, I’m keeping busy doing my weekly vlog, and it really isn’t causing me too much of a problem, so I’ll save the adjustment for another day.  My voice is weaker than it was yesterday, and that is more of an issue when I try to film myself – I keep strangling my sentences, and have to have many retakes!  I manage to have it completed, uploaded to my YouTube channel and published before my wife gets home from work, so that’s pretty good going.

 

It’s the day of the General Election here in the UK.  I’m fairly resigned to the fact that we are about to get 5 more years of the same, but hopeful that Theresa May’s majority will have been eroded by her abysmal election campaign.  Anyway, enough of politics.

I am going to film the first part of my review of Real Scientific Hemp Oil (RSHO) today, so I settle down on the sofa with my iPad (after my cups of tea, my Nutriblast and a dog walk) and start working on the script.  I set up the camera and tripod in the kitchen and take some of the covering shots of  the product that my script dictates, then load my script into the teleprompter app on my iPad and film myself.  My voice is much stronger today, and I get most of the shots that I require with only 2 or 3 takes.

I take a dose of the RSHO and wait.  After just over an hour and a quarter I notice the effects – I am much more relaxed, but my tremor doesn’t appear to have receded very much.  I am noticeably less shaky (which is good) but when I turn my DBS off, I still have really severe tremor  throughout my body, which is most disappointing.  This RHSO is a very expensive product, and I was hopeful that it would at least match the performance of medicinal cannabis.  I’ll try another dose tomorrow morning before writing the rest of the script for my review.

I take the dog for another walk before I have a quick tidy of the kitchen and vacuum downstairs before my wife gets home from work.  I message my children on Facebook to make sure they have voted, and then I pop over to the village hall to cast my vote.

Today’s weather seems to be the opposite of yesterday.  It’s raining when I get dressed, and by the time my wife has left for work it has stopped and is starting to look a little brighter.  By the time I take the dog for her morning walk, it’s looking like the sun is going to come out.

I’m not feeling as unmotivated as I have been recently, and I wonder if coconut oil has anything to do with it.  My wife has been putting a couple of tablespoons of it in my daily Nutriblast for the last 4 or 5 days, and I’ve certainly been feeling more positive for the last 3 days…  My tremor is still being a nuisance in my left leg, and feels very close to the surface everywhere else – If it hasn’t calmed down by Friday, them I’ll consider changing the settings on my neurostimulator.   My balance is ok, walking is acceptable, dystonia is okay, voice is weak and husky, muscular weakness and stiffness is tolerable.  I seem to have shaken off the extreme fatigue that was threatening to take me over last week, so that’s good.

I decide against more work on the allotment today – the amount of rain that fell yesterday means that it’ll be good and soggy today.  Instead, I set about editing some more of my neighbour’s holiday video – it’s quite interesting, actually, because it was obviously an African safari, so I am enjoying the wildlife as I edit.  Today I see elephants, giraffes and lions!  I tried to edit another entire day’s worth of video, but failed – he shot a lot of video!

I wanted to at least make a start on the script for a product review video, but failed to get around to it – tomorrow for sure..

The sun is shining when I get out of bed this morning, but by the time I’m downstairs drinking my cup of tea it’s overcast.  By the time I return from walking the dog, it’s cold, wet and windy – Summer’s over!

My tremor is still quite strong in my left leg, but it doesn’t seem any worse than it was yesterday, which I half expected after my grass cutting exertions at the allotment.  I’m not feeling bad, all things considered, but I won’t be doing any physical work today, especially not in this weather!

I spend an hour or so replying to emails and YouTube messages, and then decide to make a start on editing my neighbour’s holiday video.  It’s quite an interesting video (looks like an African safari holiday) but it is always difficult editing someone else’s video – how do you determine what is important, and what can end up on the cutting room floor?

I have almost finished editing the first day of the holiday, and the dog is reminding me that it’s time for her afternoon walk – only problem is that it is still absolutely chucking it down with rain.  I wait until I cannot keep her waiting any longer, put on my coat and brave the weather.

I wanted to do some work on my video review of Real Scientific Hemp Oil today, but somehow I have reached the end of the day without doing so – perhaps I’ll do some work on the script while we are watching telly tonight, and (hopefully) film the review tomorrow…

We collected my old lawnmower from my wife’s youngest son when we went there for a barbecue yesterday afternoon.  Several downpours of rain followed by several warm and sunny days has resulted in a hugely overgrown allotment.  I had been attempting to keep it under control using a pair of hand shears, but it was a losing battle.  So this morning, after walking the dog, I spend a couple of hours cutting the grass and clearing space in the shed so that we can keep the lawnmower in there.  I think a session with the strimmer could be in order later this week as well, and I’ll be needing to spend a good few hours weeding between the vegetable plants!

I stop the grass cutting when I feel I can’t go on any longer, and return home to recuperate.  I receive a visit from one of our neighbours – he brought me a HD video camera that he has no use for.  In return I have promised to edit several hours of holiday video that he shot (some years ago) and put it onto DVD for him – a bit of a mammoth task, which I will really have to ensure I do fairly soon, otherwise it’ll be another task waiting in the wings and giving me stress.

I spend some time creating more “front pages” for my YouTube videos, and tidy up my YouTube channel a little before taking the dog for her afternoon walk.

Tremor in my left leg is driving me mad today – it was bad yesterday, as well, but I was hoping that it would be better by now.  I’m planning another early night tonight, so we shall see if that improves matters tomorrow.

We meet up with our friends at their B&B in Mundesley this morning and set off to discover some more art on the Open Studios trail.  So we travel out to Happisburgh (pronounced haze-boro) and visit Belinda Opie, who had a wide range of quirky exhibits made from scraps and stones that get washed up on the beach by her studio.  Then we drop into the Middle Of NOVAwhere in Thorpe Market (which doesn’t really have anything that excites us) and finish off the morning with a visit to Keith Nash in Roughton, who has some gorgeous watercolours – we buy some of his greetings cards, which we really like.

Our friends decide to bale out at this stage – they have a long drive ahead of them, to Maidenhead.  We bid them farewell, and dash back to Southrepps to prepare for going out this afternoon – my wife’s youngest son and his fiancee have invited us over for a barbecue this afternoon, so we are off to Hevingham.

We travel to Hevingham, eat barbecued food, cuddle new granddaughter and return to Southrepps.  Both myself and my wife feel ready to drop.

My tremor has been persistently breaking through on my left side 9mainly my leg), but everything else seems relatively well under control – even my voice is holding out, although it does start to get a little slurred when I begin to tire.  Nothing to complain about!

Today we have some friends visiting us for a day of culture!  They are coming to Norfolk for the Open Studios event, whereby local artists open their studios and workshops to the general public.  It is a great way to pass the day, and to see some remarkable works of art that are being produced right here on our doorstep.

Our friends arrive just before lunchtime, so that’s a great excuse to go to the pub for a drink and a bite to eat.  We go to the Gunton Arms, which is owned (at least in part) by Ivor Braka, a millionaire art dealer, and which is known for the many works of art (some of them fairly “unusual”) which adorn the walls.  It also serves some very good bar food!

Having satisfied our hunger, we proceed to North Walsham to visit the studio and workshop of Berni Marfleet, who makes some wonderful garden sculptures from scrap metal.  Then it’s on to Antingham to visit Wilds Glass, where my wife and I decide we’d like to our hands at making something in fused glass, so I think we will be booking ourselves in on a workshop there in the not too distant future.  Our final stop of the day is with Sheila Robinson Art, a friend of ours in Southrepps, where we spend our time sitting and chatting and drinking tea/coffee with Sheila and her husband.

Our friends join us this evening for dinner, which goes down well.  By the time they leave our cottage to go to the B&B that they are staying at in Mundesley, the day of activity has caught up with me and I am feeling exhausted – time for bed!

I had a good night, slept well and awoke feeling reasonably refreshed.  I’m not feeling as bad (mood-wise) as I felt yesterday, which is a relief.  As far as other things go, my tremor is breaking through in my left leg but my balance seems fine, my walking is okay, I’m not in any great muscular pain, my voice is better than it has been lately, dystonia is bearable and dyskinesia is about the same as it has been for several months now.

It’s vlog day, and I haven’t yet done any work on the script – in fact I have really only just decided the subject matter, so this morning is dedicated to script writing (after dog walking, that is!).  I film myself without too many problems, and by the time my wife gets home from work I have edited this week’s video, uploaded it to my YouTube channel and published it.

We have visitors for dinner tomorrow evening, so we need to clear a load of my junk from the lounge and dining room.  I help my wife to move some of it into the conservatory (from whence it came!) but, in truth, my wife does the majority of the donkey work.

I am feeling relatively okay when I get up this morning, and am carefully nurturing a desire to list some more of my junk on eBay and Gumtree.  I make the tea/coffee and sit down on the sofa with my iPad to check my email, my messages on my YouTube channel and catch up on activity on my Twitter and Instagram accounts.  There’s a tweet that I see straight away on Twitter, and suddenly I’m not feeling so great.  Tom Isaacs has died.  I didn’t know Tom personally, had never met him, but I had watched videos of him on YouTube, and heard him interviewed (more than once) on the Jeremy Vine show on BBC Radio 2.  Tom was a fellow Parkinson’s sufferer, and one of the co-founders of the Cure Parkinson’s Trust.  More than this, though, Tom was a bubbling fountain of positivity (at least in public) and I have a sentence of his that has stuck in my head from the last time that Jeremy Vine interviewed him.  He had been talking about the research that was being funded by the Cure Parkinson’s Trust, and he finished the interview by saying “I know that one day I’ll be able to say that I used to have Parkinson’s”.  And now he won’t, and he’s gone and I feel very sad.  No cause of death has been given as yet, other than that it was unexpected and swift – he wasn’t even 50 years old.

Add to that the prospect of our lying, indecisive, weak and wobbly Prime Minister, Theresa May, getting another term in office, by running a negative, personal, fear-based campaign, and perhaps you can understand my feelings of helplessness – I can only hope that the electorate, whom she has treated with contempt, aren’t completely taken in by her.

I’ve achieved nothing today.  I’ve done nothing apart from walking the dog and vacuuming downstairs.  My symptoms have been well under control – even my voice hasn’t been quite so weak as usual.  My mood isn’t good, though.  I think I need a beer and some cannabis – so that’s what I’m going to have!

I’m trying to make myself actually do something today, even if it’s only a bit of eBaying.  We have visitors for dinner on Saturday, so I need to clear all of my junk from the lounge before then!

I get the usual morning routine out of the way first, and then do a little eBay research – seeing if there are already comparable items for sale and, if so, how much they are being sold for so that I can set the prices of my items at a reasonably competitive level.  I also weigh and measure my items so that I can check out courier/mailing prices.

My tremor is back under control (mostly) today, and dystonia is less troubling, too.  Muscular weakness and stiffness isn’t causing me any trouble.  Balance is okay, but my walking is still a little wooden.  My voice is absolutely pants, but luckily I don’t really need to use it until my wife gets back from work this evening.  I am really fatigued again, and fighting off sleep for most of the afternoon – and yet I had a really good night of sleep last night (and, indeed, for several nights), so it isn’t related to a real need for sleep.  I manage to fight it off, and get a couple of items listed on eBay, so that’s an achievement.

I take the dog for her afternoon walk, vacuum downstairs and then wander up to the allotment with the watering can to water the vegetables.

I have plenty to be getting on with this week – the stack of my junk in the lounge bears testimony to that.  I need to take photographs of everything, write descriptions for each item and then post them on eBay and Gumtree.  Some things are very difficult to put a value on, so I guess I’ll just put those things on eBay as an auction and hope for the best.  I’m feeling very fatigued (again) today – very little energy, and no great enthusiasm for anything at the moment.

I take the dog for her morning walk, and then slump on the sofa in the lounge and listen to PopMaster.  In spite of my 2 daily excursions with the dog, I don’t get a great deal of exercise – not because I’m lazy (honestly!), but because it takes so much out of me.  I have one of these Fitbit fitness tracker watches, because a friend of mine recommended it to me as a way of keeping track of how much (or little) exercise I am doing, and as a means to spur me on to do a little more.  My wife has one, also, as does her eldest son, her youngest brother, her ex-husband and my daughter.  The software enables each of us to see how well everyone else is doing, so yesterday I looked at how many steps each of us takes on an average day – my Fitbit tells a story of my Parkinson’s Disease and the impact it has upon my life.  My wife’s ex-husband does a huge number of steps, averaging 19,826 per day – he works on the roads for the local council, so I guess it’s to be expected that he does a lot of walking.  Next on the leaderboard is my wife’s eldest son, who clocks up a daily average of 15,720 steps – he works for a building company so, again, it’s not a big surprise that he walks a lot.  My wife is in 3rd place, with 14,440 steps – pretty impressive!  In 4th place is my daughter  with an average of 13,281 steps per day.  In 5th position is my wife’s youngest brother, with 10,310 steps – just over the 10,000 steps per day that Fitbit recommend.  I am trailing the field with a miserable 3,789 steps per day, which is actually better than I had imagined it to be.  Today I have done 2,091 steps, and I’m feeling every single one of them!

Aside from feeling fatigued and unmotivated, I’m feeling shaky, my muscles are aching, and my voice is giving up on me.  My elder brother called me on FaceTime today from Nova Scotia to say that he wasn’t able to get an answer when he FaceTimed our mother today.  I had to explain that he was wasting his time, because her voice was too weak for her to hold a conversation at the moment – I had to repeat myself at least 5 times before he could understand what I was saying!

My daughter is travelling home to Stevenage this morning, so we are up relatively early (considering it’s a Bank Holiday here in the UK), making (and drinking) tea/coffee/nutriblasts and eating breakfast cereal.  She leaves a little later than planned, but we are waving her off at 9.45am.  My wife wants to have a clearout of the conservatory, so we will be spending the rest of the day trying to get organised.

My tremor is still very noticeable on both sides, and dystonia in my right foot is a minor nuisance as the day progresses.  My voice is still weak, but not as bad as it has been recently.  Balance and walking – acceptable.  Muscular weakness and stiffness – uncomfortable but not painful.  Fatigue – not as bad as it has been.

Firstly, though, we need to load my wife’s car with assorted rubbish from the garden, and take it to the tip near North Walsham.  So, we load up the car and drive over to North Walsham, paying a visit to Lidl on the way to pick up some vegetables and milk.

When we get back home, we clear a load of junk out of the conservatory (well, more accurately, my wife clears it), handily transferring most of it to the lounge and dining room.  Much of it requires my attention (because it’s mostly my junk), and I spend some time taking photographs of it all, in preparation for selling it on eBay and Gumtree.

By the time we have had dinner, had baths and settled in front of the telly for the evening, there is still plenty of my junk in the lounge, so it looks like I’ll be busy trying to get rid of it this week.

My daughter wants to do stuff while she is visiting my wife and I, so today we are going to be visiting my mum, who lives in Stalham, about 14 miles from Southrepps.

First things first, though.  We have another cooked breakfast (bacon, sausages, fried eggs, toast) rustled up by my wife, and then we go to the allotment to water the newly planted seedlings (provided they are still alive – I neglected to water them yesterday).  The seedlings survived, which I am very relieved about, and my daughter helps my wife and I clear some of the weeds that are threatening to overwhelm our vegetable plants.  My tremor is breaking through quite strongly today, and I have very little stamina, so I only last about 20 minutes before I am wanting to go back home and take a seat.

My daughter drives us to Stalham.  We go to Tesco first, and buy chocolates and ice creams and take them with us when we visit my mum.  My mum has advanced Parkinson’s Disease and she isn’t having a very good day – in fact it seems like she hasn’t had a very good week because she tells me that she has had 4 falls this week!  No bones broken, luckily.  Her voice is a whisper, and it is virtually impossible to carry on a conversation with her.  The only sentence that I hear clearly is when she tells my daughter that “life is too difficult for me”.  Not exactly an enjoyable and uplifting visit.

My wife and I watch a documentary on YouTube this evening (whilst my daughter is busy doing some work towards her Biochemistry degree) about cannabis, and I heartily recommend it (even though the audio quality isn’t great) – it’s called “When We Grow, This Is What We Can Do” – it highlights the absurdity of the UK’s drug laws.

I wake up early, but get up late.  It’s another gorgeous day in Southrepps – the heatwave continues (for the moment – heavy rain is expected tomorrow).  My daughter paid us a surprise visit last night, so we sat up relatively late, chatting, drinking and listening to music.

This afternoon we are all going over to Hevingham to have a barbecue with my wife’s sons and their fiancees and our 2 granddaughters, so this morning (after walking  the dog and eating a cooked breakfast, prepared by my wonderful wife) we are off to Lidl and Morrisons in Cromer to buy ribs, burgers and sausages to go on the barbecue, and ingredients for a couple of fattening desserts.

My wife confines herself to the kitchen, preparing salads and desserts, while my daughter takes herself off for a walk in the countryside and I compose an email to Norman Lamb, our local MP – he called while we were out in Cromer, campaigning for the General Election on 8th June.  I have been meaning to contact him regarding medicinal cannabis (I’m aware that he, and his party, support the legalisation of cannabis for medicinal use) to see if he would be prepared to state his views on camera for The God Plant, the documentary about cannabis that I was interviewed for several weeks ago.  I don’t expect I’ll hear back from him until after 8th June, but I’m fairly confident he will consent to being filmed for the documentary, which would be fantastic – he’s a very well regarded politician, and I’m pleased that he is well supported around these parts.

I’m feeling quite shaky today, and the trip to Cromer has tired me out, so I’ll be taking it pretty easy this evening.  My voice keeps disappearing, too, so I don’t expect to be talking very much.

I have a number of comments that people have left on my YouTube channel and a couple of emails that I need to respond to, so I respond to them before we depart for Hevingham – barbecue bound!

It’s Friday, and Friday is filming day.   I started on the script for my vlog yesterday evening, while I was waiting for my wife to come home, but I still have a fair bit of work to do on it before it’s fit for purpose.  I crack on with it whilst listening to PopMaster, and by the time I’m happy with it, it’s 12pm.  I have a lot of tremor on my left hand side today, but I’m not surprised – I really overdid it down at the allotment yesterday.  My voice is also quite weak, and I can see I’m going to have trouble getting footage that I am happy with.

I load my script into the teleprompter app on my iPad, and rehearse it a couple of times.  It seems to be about the right length, so without further ado, I set up the camera and tripod in the lounge, adjust the lighting and film myself.  I’m not as bad in front of the camera as I feared I was going to be and, although I had half a dozen takes, I manage to get sufficient raw footage to be able to proceed with loading it onto my MacBook and editing it.  I have edited, uploaded and published my latest vlog before my wife arrives home from work, which I’m very happy about.  I even managed to walk the dog (again) and water the vegetable plants down at the allotment!

My wife arrives home, laden with groceries for the weekend ahead (including a few beers).  I’m feeling exhausted again, so I think another early night is called for.

Another beautiful, sunny day dawns in sleepy Southrepps, and I’m definitely feeling a little more positive this morning.  I know I should really be thinking about getting on with the bathroom tiling, but instead I’m thinking about going to the allotment and planting stuff!

I drink my tea and nutriblast, and then take the battery out of my car and put it on charge in the conservatory (cross that one off the list).  I walk the dog, listen to PopMaster and check my email and social media.  I’m a little concerned when lunchtime comes around (not that I actually bother to have lunch) and I still haven’t moved from the sofa in the lounge.

I actually have to command myself to get up and sort the plants out to take down to the allotment.   I put a few seedling trays and seedling pots into carrier bags,  and set off to the allotment, which is only a few minutes walk away.  Recent rainfall, combined with a couple of warm and sunny days, has resulted in a very overgrown plot – it’s always the weeds that seem to grow the best, isn’t it?  I weed around the courgette plants, and  replace a couple of frost victims with butternut squash seedlings.  I plant out half a dozen tomato plants into a couple of grow-bags that we purchased a couple of weeks ago, and then plant out 10 French bean seedlings – if they all survive, we’re going to be eating a lot of French beans!  Then I weed around the onions and carrots (some of them, anyway) and hack down some of the larger weeds and stinging nettles with the shears.  I’ve only been working for about and hour and a half, but I think I might have overdone it – I’m dragging my feet as I walk back home.

The dog is ready for her afternoon walk when I get through the door so, of course, I must take her – knackered or not!  On returning from our walk, I remember that I need to water the seedlings in, so somehow find the energy to fill the watering can and carry it down to the allotment.  It’s just as well that I did, because the tomato plants are looking decidedly limp in the afternoon sun – I do hope that they survive.

My wife is going to be late home tonight, so I slam a ready meal into the oven, put a can of Stella Artois in the freezer and have myself a much needed bath while dinner is cooking.

My tremor is starting to surface on both sides (probably because I’ve overdone things) but I’m otherwise in pretty good shape – I expect I’ll pay for it tomorrow.

I had another solid night of sleep, only waking (briefly) just after 5.30am, and again a few minutes before the alarm went off at 7am.  I feel more fatigued than I did yesterday, but Im feeling a little better motivation-wise, so I am hopeful of actually doing something today.

The morning passes in the usual fashion.  I drink my morning cups of tea and my Nutriblast, walk the dog and listen to PopMaster.  I check my email and social media accounts and respond to a couple of messages.

I have a scramble around under the bed in the spare bedroom, and locate the plastic crate containing the mosaic tiles that I need, to be able to progress with the bathroom tiling.  I cut 2 strips to size for the window recess, and glue them into place.  You might find this hard to believe (I can hardly believe it myself) but I’m feeling knackered after just half an hour’s work, so I clear up, clean the tools and have a sit down.

The seedlings that are growing in the conservatory are desperately in need of planting out – I think the plants have consumed all of the nutrients in the compost – so I mix up a watering can full of plant feed and water them fairly generously.  Perhaps I’ll get some of them planted out tomorrow, if the weather holds out – it’s been a beautiful sunny day in Southrepps.  The allotment really needs a little more attention than we have been giving it, and my wife has enough on her plate, so I feel I should do something about it.  Tomorrow.

My symptoms seem stable – about the same as yesterday (including my disappearing voice), so nothing to complain about.

I have a quick tidy of the kitchen before my wife gets home from work, but fail to get the vacuum cleaner out in time, so the vacuuming doesn’t get done today.  No big deal!

I slept reasonably well last night, only waking once (around 6.30am) but falling straight back to sleep.  I’m awake again just before the alarm goes off at 7am, and I hit the snooze button a couple of times before getting up at 7.20am.  I’m feeling well rested, but I don’t know if my motivation has returned – I’m feeling that I could do stuff today, cross an item or 2 off my list, but the proof of the pudding is in the eating!  I give the dog her breakfast, make the tea and coffee and sit down to think about what I can get done.

My wife furnishes me with my Nutriblast and disappears off to her workshop in Hevingham, having asked me to prepare a receipt for one of her customers – that’s an easy win!   The 9am news comes on the radio, and the news of the terrorist attack in Manchester takes the wind from my sails.  I sit and read the news in The Metro, online, in disbelief – what a sick world we live in!

I walk the dog, and then sit in the lounge with my laptop to deal with a couple of messages that have been left on my YouTube channel, and reply to a couple of emails that have arrived overnight.  Mid-afternoon I self-medicate with cannabis (a little more than usual) to see if that will raise my mood – it doesn’t help restore my missing motivation, but it does help me to feel less stressed about it, so that can’t be a bad thing.  I create the receipt for my wife’s customer, and print it (cross that one off the list!), then take the dog for her 2nd walk of the day.  When I get back to the house, the weeds in the front garden catch my eye, so I spend half an hour pulling up weeds (and that job wasn’t even on my list!) – perhaps the cannabis has helped me after all… Finally, I vacuum downstairs and then have a quick clear up in the kitchen before my wife gets home from work.

Symptoms?  Tremor breaking through on both sides and dystonia fairly uncomfortable on my right foot (until the cannabis sorts it out).  Voice is weak and disappears a couple of times when I’m talking to the dog!  Balance is fine.  Walking is slightly wooden.  Muscular weakness and stiffness isn’t too bad.  Dyskinesia is still present, but not bothering me too much.  I don’t feel so dreadfully tired today, and I don’t have to fight off sleep (in spite of the relaxing effect of the cannabis).  Another early night is on the cards.

I thought that my motivation was on its way back – I have certainly felt better the last couple of days – but today I have been disappointingly idle (again).  There are several things that I want to make some progress with this week:

• the bathroom tiling
• my car battery needs charging
• seedlings need to be planted out at the allotment
• I need to film, edit and publish my video review of Real Scientific Hemp Oil
• I need to write a script for a future vlog about Martha Orbach – the artist who watched my operation last year, and who is working on a project about Parkinson’s Disease and Deep Brain Stimulation.  I recently received a copy of some of the drawings that she did (immediately following my operation) through the post, and both my wife and I are absolutely delighted with them
• I need to decide on a subject for this week’s vlog, and do the necessary research for the script

I’m feeling reasonably okay this morning (mood-wise).  I drink my tea and Nutriblast, take the dog for her morning walk and then listen to PopMaster.  I thought that I would either work on one of the vlog scripts, or do some tiling today, but I have failed.  Extreme fatigue has me fighting off sleep again almost as soon as I return from my dog walk, and I achieve almost nothing today.  I do manage to vacuum downstairs and then take the dog for her afternoon stroll, which is better than nothing (but only just).  My tremor is back under control (mostly) and dystonia is less of a distraction.  My voice is okay, as is my balance and walking.  Muscular weakness and stiffness is tolerable.

I’m awake at 7am and up and dressed at 8am – well, it is Sunday!  I leave my wife sleeping and go downstairs to feed the dog and finish off clearing up after yesterday’s belated birthday party.  I’m feeling (slightly) more motivated this morning, and I find myself actively wanting to achieve something (anything!).  I have in mind planting out some more seedlings at the allotment, but that doesn’t work out in the end…

My wife wants to achieve some organisational tasks around the house, so that’s what we end up doing.  She brings down our Summer clothing from the loft, and exchanges it with all of our Winter clothing that is currently in the wardrobe and chest of drawers, and then we set about sorting out my mess in the conservatory – she bought me a huge toolbox for my birthday, so that I can keep all of tools and sundries, such as screws and nails, in a place where I can find them when I need them.  We sort through a large box containing boxes of screws, and stash them all in a drawer of my new toolbox, and I have to admit that it will be easier to find them in the future.

My brother-in-law, sister-in-law, their daughter and their dog drop in on us  this afternoon bearing gifts of the birthday variety, so we have a chat and a (soft) drink and scoff some of my birthday cake, before taking the dogs over to the field by the village hall to expend some of their (seemingly boundless) energy.  I self medicated with some cannabis before they arrived, and I notice that my walking is much better today, and my other symptoms seem to be bothering me less – tremor not breaking through so much, anxiety much more under control, muscular weakness and stiffness not so painful.

My wife and I enjoy a dinner of yesterday’s leftover party food (waste not, want not) before settling down in front of the telly for the evening.

Today is my (belated) birthday party, so much of the day is spent clearing the decks in preparation for a houseful of guests this afternoon.  My wife busies herself cooking party food and making fattening chocolate-based goodies, while I take the dog for a walk, clear away all of my camera gear and run the vacuum cleaner around downstairs.  We dash out to Cromer to get some more bits and pieces that we didn’t get when we went to North Walsham yesterday, and then (before you know it) it’s 4pm and our guests are due.

We have my wife’s 2 sons and their fiancees, our 2 grandaughters and my wife’s ex-husband and his partner for a fairly raucous 4 hours of eating, drinking and making a fuss of the grandchildren.  The dog is in her element, following our eldest granddaughter around, waiting for her to drop her food (which, inevitably, she does).

When the house is once again quiet, we clear away the party debris, load the dishwasher, vacuum up the cake crumbs and settle down in front of the telly for the evening.   I crack open another beer and think about self-medicating with a little cannabis.  I have quite a bit of tremor breaking through on both sides, have some muscular pain in my right arm, and am walking quite badly today.  My balance seems okay, though, and my voice is much stronger than it was yesterday, so I’m thankful for small mercies!

I’m still not feeling like doing very much today, but I have a vlog to do so I had better do something about getting myself motivated.

I didn’t make much progress with the script yesterday, so that’s my first task (after my cups of tea, dog walking and PopMaster).  I’m talking about Parkinson’s Disease symptom progression this week, and I thought that I would struggle to find enough to fill 5 minutes of video, but once I get started the words flow freely.

I set up the camera and tripod in the lounge, load my script into the teleprompter app on my iPad, and rehearse it a couple of times.  I film myself, which takes forever – my voice is playing me up today, and I’m having great difficulty in getting footage that I am happy with.  I considered turning my neurostimulator down to see if that would help, but my tremor is already borderline annoying and I really don’t want to make it any worse.   Eventually I am finished, and load the video onto my MacBook and start editing it.  I obviously got carried away when I was writing the script – I like to keep my vlogs to around the 5 minute mark, but this one has stretched to over 8 and a half minutes!

By the time my wife gets home from work, I have finished it and am ready to upload it to my YouTube channel.  I leave it uploading while we go to Lidl in North Walsham to do our weekly grocery shopping.  I publish it when we get back home – rather later than usual, but I am pleased that I managed to achieve it.

Another day of lethargy, lethargy and more lethargy.  I can’t seem to get myself enthusiastic about anything just at the moment, and it’s getting me down.  My wife is so incredibly patient with me – she leaves me sitting on the sofa when she goes to work each morning, and she finds me (usually) still sitting in the same place when she returns home in the evening.  She doesn’t understand my lack of motivation, and it’s difficult to explain it to her because I really don’t understand it either (apart from the fact that it’s a Parkinson’s Disease symptom and it’s something to do with the “reward centre” in the brain).

I do manage to get the essential tasks done – 2 dog walks!  I even manage to take the dog’s brush out with me and give her a thorough grooming, which will save me some work when it comes to vacuuming the lounge a little later on.  My walking and balance is much better today, but tremor is a little more troublesome.  Dystonia and dyskinesia are both present, but tolerable.  Muscular weakness and stiffness in my right arm isn’t as painful as it was yesterday, but my voice is still absolute pants.  I’m still feeling very tired, still fighting off sleep, but not as bad as yesterday – the early night must have done me some good!

I decide to make a start on the script for this week’s vlog this afternoon.  I have chosen the subject, and can script it without having to do any research, so it should be relatively straightforward.

I run the vacuum cleaner over the floors downstairs before my wife gets home, and make sure that the kitchen is reasonably clean and tidy.

Another early night?  I think it would be a good idea…

I’m awake before the alarm goes  off at 7am (as usual).  I don’t really want to get up, but a full bladder drags me to the smallest room, and there didn’t seem much point in going back to bed, so I get dressed and go downstairs to give the dog her breakfast.

Motivation still seems to be down the toilet, so I am not expecting to achieve very much today.  My wife wants me to locate a load of emails from the accountant, and I need to find all of the documentation relating to my pension so that I can (hopefully) draw some money out of my pension fund.  Those are my achievable targets for the day – shouldn’t be too difficult.

I feel really, really tired, in fact I am almost overwhelmed with tiredness today.  As early as 11am I am fighting sleep (and very nearly succumb) and it persists all afternoon, no matter how hard I try to shake it off.  My voice is also incredibly weak, as it was last night, and it’s lucky that it’s only the dog that I have to speak to.  Tremor isn’t too bad, but breaking through in my left leg from time to time.  Dystonia in my right foot is uncomfortable, but bearable.  Muscular stiffness and weakness in my right arm is painful, but not as bad as my lower back pain which started yesterday.  Walking is a little wooden, and my balance isn’t the best it’s been.

I locate all of the emails from the accountant, find some of the paperwork relating to my pension (more effort required here!), walk the dog (for the 2nd time) and vacuum downstairs before my wife gets home from work.

I’m exhausted – an early night is definitely on the cards.

I really need to get back into doing something.  I’ve been totally unproductive for what seems like an absolute age (if you don’t include making videos for my YouTube channel) and I have an overwhelming sense of underachievement!  I need to finish tiling the bathroom, and so, when my wife asked me what I was planning to do today, I replied that I was going to try to make some progress with tiling the bathroom.

Epic fail!  I’m going through another period when I am struggling to motivate myself to do the simplest things, and so no progress was made with the bathroom, although I did try (and failed) to find some glass mosaic tiles that I need.  On the plus side, I emptied the recycling box in the conservatory into the recycling bin in the back garden, changed over the Calor gas bottle for a full one (which is something that I have been putting off for the last couple of weeks), walked the dog (twice) and vacuumed downstairs.  I also dealt with messages and emails that had arrived overnight, although I can’t say that I found that too taxing.

I also want to film a review of the Real Scientific Hemp Oil that I tried (on 3 separate occasions) over the last week or so, but can’t seem to manage to do that either.  I think I need to give myself a good stern talking to!

Tremor is breaking through on both sides today, but it’s only mildly irritating so I won’t bother making any adjustments to my neurostimulator just yet.  Dyskinesia is a little more troublesome than it has been for weeks and weeks, but I’m coping with it.  Dystonia is also mildly irritating.  Balance and walking are pretty good at the moment.  My main issue is lower back pain, which isn’t Parkinson’s related (at least, I don’t think it is) – I think I must have strained myself carrying my birthday present into the house from my wife’s car yesterday evening!

It’s my birthday today, and I am 56 years young!  My wife returned home late last night, and we didn’t get to bed until the early hours which meant that I really didn’t want to get up this morning when the alarm went off (so I didn’t!).  I get up at 8am, leaving my wife to sleep on and catch up on all the sleep she sacrificed over the last 3 nights, helping her youngest son and his fiancee get into the swing of parenthood.

I open cards while I have my morning cuppa and Nutriblast, and then we get a visit from my brother-in-law, who comes bearing gifts (beer!).

We pay a quick visit to my wife’s youngest son, his fiancee and our latest granddaughter in Hevingham, and then we are off to Stalham to see my younger brother and my mum.  My mum gives me a sizeable cheque so that we can go away on holiday somewhere nice this year (thanks, mum!) and my bother furnishes me with some more beer (are you spotting the pattern here?).  Then it’s back to Southrepps to walk the dog, check on the allotment and prepare something to eat.

Symptoms are pretty much the same as they were yesterday, with the exception of muscular weakness and stiffness in my right arm, which is giving me some pain and restricting movement – time for a beer and a little self-medication with cannabis.

I manage to have a bit of a lie-in this morning, and don’t get up until after 9am.

I have a leisurely cup of tea and make myself a Nutriblast for my breakfast.  I know that I’m not going to do very much today – I don’t feel up to doing any tiling, so my self-imposed target of finishing the bathroom by the 15th May is well and truly missed.  I’m just going to have a quiet day at home.

I have a bit of a tidy up in the kitchen – I’ve let things slide a little while my wife has been away at her youngest son’s for the last 2 or 3 days.  I empty the dishwasher, and then decide to make a root vegetable mash with some turnip, parsnips and carrots that need to be used up because they are starting to look decidedly the worse for wear.  I chuck in half a bulb of garlic and a couple of chillies to spice it up a bit, and congratulate myself on chopping all those vegetables without any bloodshed.  My tremor is still reasonably well contained, but it is feeling a little close to the surface compared with the last couple of days.  Dystonia in my right foot is making its presence felt, but it’s bearable.  My voice seems okay, but then I’ve only spoken (to the dog) on a couple of occasions today, so it’s difficult to judge.  Balance is fine and my walking isn’t too bad.  Muscular weakness and stiffness are okay, but waves of fatigue threaten to overwhelm me from time to time.

I take the dog out for her afternoon walk, and then spend half an hour at the allotment, hoeing between the rows of onions.  A couple of courgette plants appear to have survived the frost that we had earlier in the week, which is good.

I bung a ready meal in the oven (Thai green curry) when I get back home, vacuum downstairs, and then slump on the sofa with a bottle of Hobgoblin.

I’m awake around 6am, but manage to nod off again until the alarm goes off at 7am.  I’m up and dressed at 7.15am, and feeling reasonably okay, considering that I had a night out last night (and spent most of it on my feet).  I make a pot of tea for me and our friend from Brighton, and then cook us a breakfast of bacon, eggs, sausage and baked beans – the first bit of cooking I have done for ages.

Our friend departs for home just before 9am, and I take the dog for her morning walk before considering how I am going to spend the rest of the day.  My wife is still over at Hevingham, helping her youngest son and his fiancee with the baby – I’m expecting a call at some stage today, inviting me over to Hevingham for the purpose of meeting the new arrival.  I should really be getting on with the bathroom tiling today, but I’m starting to feel tired already, so I’m going to leave it for another day.  Tomorrow?  Perhaps…

I concentrate on things online, adding links to my latest vlog to all of the Parkinson’s Disease groups that I am subscribed to on Facebook, and replying to questions and comments that have been posted on my YouTube channel.

I spend most of the afternoon sitting on the sofa in the lounge and fighting off sleep.  It is very tempting to succumb to it, but I know that if I go to sleep during the day, then I’ll have trouble sleeping tonight.  My symptoms are remarkably well contained today, especially given my current level of tiredness.  A little dystonia in my right foot is the only thing that is of any bother.

My wife calls me around 5pm, inviting me over to have some dinner and to meet our latest grandchild, so I take the dog out for a bit of a run, and then drive to Hevingham for the evening.

My usual Friday task is pretty much done and dusted already.  My wife and I are having an evening out with our friend from Brighton, so I wouldn’t have had time to script, film, edit and publish my weekly vlog today.  The only task I have to do is to publish it and post a few links to it on social media, which I do in between walking the dog, listening to PopMaster and designing a few more “front screens” for my YouTube videos.

My wife stayed in Hevingham last night to look after her son’s 2 dogs.   His fiancee lost a fair amount of blood during childbirth yesterday, so they hospital are keeping her in so they can keep an eye on her.  Our latest grandchild is gorgeous, and I can’t wait to meet her, but someone needs to stay in Southrepps and look after our dog.  Plenty of time for all of that when she comes out of hospital!

Our friend arrives soon after 4pm, and we plan on being at The Waterfront when the doors open at 6.30pm, so that means leaving Southrepps around 5.30pm to be on the safe side.  We have a ready meal before departing for an evening of loud music (From The Jam) and plenty of beer.

I get up this morning to an empty house (apart from the dog).  My wife had a phone call from her youngest son during the night – his fiancee had gone into labour and they were on their way to the Norfolk & Norwich hospital.  My wife wants to be at the birth, so at around 2.30am she got dressed and drove to meet them at the hospital.  At 5.17am there is a new life – our 2nd granddaughter has been born!  Mother and baby are both doing fine.

I am filming (and editing) my weekly vlog a day early this week – our friend from Brighton is coming to visit tomorrow, and then we are all going to see From The Jam at The Waterfront, so I won’t have time to get it all done and published before we go out.  I finish off the script this morning – it was much harder work than I had anticipated – and then setup the camera and tripod in the lounge, load the script into the teleprompter app on my iPad and rehearse a couple of times.  My voice isn’t too good today and I think I’m going to struggle with the filming.

Sure enough, I require many, many takes to get something that I’m even remotely satisfied with.  I load it onto my MacBook and get it edited as best I can.  It’s a good job that I subtitle all of my videos because my voice sounds very indistinct, and even I would struggle to understand what I’m saying if it wasn’t for the words on the screen.  I load the video up to my YouTube channel and schedule it to be published tomorrow afternoon.

My wife returns home (briefly) at around 10pm to have a bath and get changed, and then she’s off to Hevingham for the night to look after her youngest son’s dogs until he and his fiancee (and our granddaughter) return from hospital – hopefully tomorrow!

The dog cuddles up to me on the sofa, and I wet the baby’s head with a bottle of KingGoblin.  Cheers!!

 

I get up with every intention of carrying on with the bathroom tiling today, but in the end the closest I get to doing anything is putting on my work clothes when I get dressed.   I’m feeling feeble, which seems ridiculous when you consider I was only actually tiling for about 2 hours yesterday.

I get on with some online tasks instead – there’s the water bill to pay, and I need to email friends to break the news that we can’t accommodate them at the end of the month when they wanted to visit, because I am unsure whether or not I’ll have finished the bathroom, and I’m pretty sure that I won’t have cleared the spare room, which is currently like a building site.

My wife and I are going to a gig (From The Jam) on Friday evening, at The Waterfront in Norwich, so I need to start work on my weekly vlog a little earlier than usual.  If I can get the script written today, and then film and edit it tomorrow, I should be able to do some more tiling on Friday before getting ready to go out.   I have a subject in mind, so I get on with researching it and working on the script.

I check on the allotment when I take the dog out for her 2nd walk of the day.  Disaster!  We had a frost last night (so one of the other allotment holders told me), and our courgette plants are looking decidedly the worse for wear.  I’ll give them a couple of days to see if they recover, otherwise we will have to plant some more seeds.

Tremor is okay today, but dystonia in my right foot is rearing its ugly head.  Voice is weak, but at least it hasn’t disappeared (yet).  Balance is okay, and muscular weakness and stiffness isn’t bothering me quite so much. My walking is rather wooden, though, and I find myself fighting off sleep a couple of times this afternoon.   I self medicate with some Real Scientific Hemp Oil – I had hoped to film my review of this product this week, but it just isn’t going to happen.  Next week, perhaps.

I get dressed in my scruffy work gear for the second day in a row.  I didn’t really make any progress with the bathroom tiling yesterday, so… today’s the day!

I get the usual morning activities out of the way (tea, Nutriblast, dog walk, PopMaster) and then assess the situation.  I have to cut some more tiles before I mix up a load of adhesive – the last thing I want is to run out of tiles before I run out of adhesive – so I setup the electric tile cutter in the back garden, mark up the tiles that I need to cut, and cut them.   Then, I mix up a bucket of adhesive and retire to the bathroom.   I spend the next couple of hours gluing tiles to the bathroom walls, running out of adhesive just before running out of tiles.  I clear up the mess that I have made in the bathroom and then wash up the tiling tools and clear up the mess in the back garden.  The dog is asking me to take her for a walk, so I take her (of course), even though I’m feeling like collapsing onto the sofa and staying there for a while – I seem to have worn myself out!

My walking is not as good as it could be this afternoon – it was fine this morning, so it’s probably due to fatigue.  Tremor and dystonia are ok, voice is better than it has been for several days, muscular stiffness and weakness are most uncomfortable.  For some reason my tinnitus is through the roof this afternoon – that usually only increases when I have self medicated (with cannabis or CBD) so I am pointing the finger at fatigue (again).

I get dressed in my scruffy work gear this morning, which denotes my intention to get a move on with tiling the bathroom (even though I’m really not feeling very motivated at the moment).   Before I get started, there are various other things that I need to do – make the tea/coffee (and drink my tea), take the dog out for her morning business, drink my Nutriblast (prepared by my wife), listen to PopMaster, chase up my expenses for the Amsterdam filming weekend from Vice.com and review and amend the article about me that will be published by the PatientsLikeMe website later this week.  I also have to consider the fact that I am being a house viewing proxy for a friend of mine, who lives in Brighton, at 3.30pm, so I need to clear up all of the tiling mess (that I haven’t yet made) by 3pm at the latest so that I can get to the property in East Beckham in plenty of time.

I compose a fairly terse email to Vice.com – they owe me over £100 in expenses from our trip to Amsterdam on the 1st April, and I’m starting to get a little bit brassed off that they are dragging their heels in reimbursing me.  Just before I press the “send” button, I have the presence of mind to check my bank account, and find that they paid my expenses this morning!  Typical!  I delete the email, and turn to reviewing the article for PatientsLikeMe.  There are a couple of minor details that are incorrect, so I correct them and email the amended copy back to them.

The available tiling time is getting short, so I resist the temptation to mix up a load of adhesive.  I am breaking up the floor to ceiling expanse of tile by having a double row of glass mosaic tiles at about waist height, so I need to mark up the walls with the position of the mosaic rows.  It is while I am doing this marking up that I manage to knock off one of the tiles that I glued to the wall yesterday (not very well, evidently!) – 2 steps forward, 1 step back…

I drive to East Beckham to view the house on behalf of my Brighton friend.  It’s a gorgeous property (converted barn), but it’s all starting to look a little bit tired and needs some time and effort (and money) spending on it.

The dog is waiting for her afternoon walk when I get back home, so I don’t keep her waiting.   My walking is a little more wooden this afternoon, and my voice let me down a couple of times when I was talking to the Estate Agent earlier on.  Tremor and dystonia are contained (but only just).  I have been considering trying another dose of the Real Scientific Hemp Oil that I took yesterday, but didn’t want to do so before I went to view the house this afternoon.  Now that I’m back home, I measure out (and take) the recommended dose, ensuring  that I have some coconut oil and a hot drink to wash it down with (following my experience yesterday!)

I’m up bright and early (for a Sunday) because I want to make some progress with the bathroom tiling today – I have committed to finishing it by my birthday, which is on the 15th, so I’m starting to panic.

I have quite a lot of tiles that have to be cut to size (and shape), so I setup the electric tile cutter in the back garden and cut a few tiles.  I then spend rather a lot of time mucking about with some plastic tile trim (that I wish I had never bought) trying (in vain) to make a professional looking job around the window and the door frame.   By the end of the afternoon I have actually only stuck two tiles to the wall and now it’s getting a bit late to mix up another load of adhesive.  Looks like I’ll be doing a lot of tiling this week!

My tremor is still pretty much under control, although it feels very close to the surface.  I decide to try taking some Real Scientific Hemp Oil that I was sent (some months ago) to review – see how it makes me feel.  It tastes pretty rank (and bitter) but the big surprise comes when I swallow it – it starts by warming my throat slightly (as other CBD oils have done), but then it feels like I have swallowed ground pepper and my throat feels on fire!  I try taking a little coconut oil to soothe my throat, and follow it up with a mug of hot water to wash it all down.  It quickly subsides, thank goodness, and I wait for it to take effect, hoping that the effects won’t be equally surprising.  It takes 30 minutes or so to kick in, and the effects are nicely relaxing.  I’ll have to take some more either tomorrow or Tuesday and film it for a video review.  It doesn’t do anything for my voice, unfortunately, which is very weak and strangulated today, and disappears at times.

I’m awake soon after 7am, and out of bed by 7.30am, leaving my wife to catch up on some much needed rest.

Downstairs, I give the dog her breakfast and then check my email and social media, responding to a rash of overnight messages.  I also start work on a “front page” image for my YouTube channel videos – I want something to uniquely identify my videos as being mine.

At the moment, whenever I publish a YouTube video, YouTube takes a random frame from within the video and displays that frame as the video’s “front page”.  Unfortunately, since the majority of my videos are just me talking to the camera, almost every single video that I have published looks the same (or very similar).

I guess that does uniquely identify them as my videos, but the only thing that differentiates them from one another is the title.  I decide on a format, and update 2 or 3 videos with revised “front page” images.

My wife and I take the dog for her morning walk, and then my wife disappears for a run while I search online (unsuccessfully) for some tiling spacers that I require so that I can make progress with the bathroom tiling.  When my wife gets back from her run, we decide to take a drive into Norwich to see if I can get what I require from one of the tiling warehouses on the ring road.  I get the spacers that I need form the first tile warehouse that we visit, so our trip to the big city is mercifully brief.

We call in at Hevingham (on our way back to Southrepps) to see my wife’s sons, their fiancees and our granddaughter, and then hurry back home to take the dog for another walk (which my wife does).  By this time it’s after 5pm, so too late to start tiling.  We have an early dinner and settle in front of the telly for the evening.   My voice has completely failed me this evening – it hasn’t been great all day, but now I open my mouth to speak and nothing emerges.   All of my other symptoms are well controlled today apart from muscular weakness and stiffness in my upper arms, which is fairly painful.  Overall – mustn’t grumble (and if I did, you wouldn’t be able to hear me in any case!).

It’s Friday, so it’s vlog day, which means more scripting, more filming, more editing.  My son suggested that I vlog about my first 12 months since I had my deep brain stimulation operation, so that’s what I am going to do.   I made a start on the script last night, but there’s still an hour or two’s work before it’s finished.

Tea, Nutriblast, dog walk, PopMaster.  Then I am ready to get on with writing my script.

2 hours later my script is written, loaded into the teleprompter app on my iPad and rehearsed – it comes in at a shade over 5 and a half minutes, which is just about right.  I manage to film myself with only a couple of retakes – my voice isn’t giving me as many problems as usual today.

I seem to be getting quicker at editing, as well – or maybe it’s just that I am getting more sloppy, less particular.  Possibly…   Anyway, I edit the vlog in under 2 hours, upload it to my YouTube channel and publish it.

Time for the dog’s afternoon walk.  We meet up with some of her doggie chums, and she expends plenty of energy chasing someone else’s ball.  My walking isn’t too bad, and my balance is also pretty good (I haven’t had to catch myself at all today).  Tremor is under control and dystonia is only mildly uncomfortable.  I’m having a good day!

We finished watching Homeland last night – very sad ending, and also very sad because it’s over and we need to find something else (equally as good) to fill our evenings.

I have decided that my video needs some music to fill a long sequence that is currently silent, so my first task of the day (after dog walking) is to compose a minute or so of music to fill that silence.  I load Garageband on my MacBook and get stuck into composing something unobtrusive.  An hour or so later I have something that I think is acceptable, so I add it to my video and then upload it to my YouTube channel.

Foolishly, I have included the word “cannabis” in my video title, so it gets flagged by YouTube.  I rename my video (leaving out the “C” word) and upload it again!

I post links to my new video on Facebook, Instagram, Twitter and a number of Parkinson’s Disease forums that I am subscribed to.  I also send the link to my friend in Guernsey who is campaigning for legalisation for medicinal use in Guernsey – he is most impressed with it, which is very pleasing, and wants me to add some Guernsey-specific messages to my video and then show it to David Nutt and (potentially) Richard Branson, both of whom support the medicinal use of cannabis.  It would be fantastic if the message contained in my video could bring about such a change.

My son has suggested a topic for my weekly vlog, so I start work on my script in preparation for filming tomorrow.

I am doing a video remake today.  I have been asked to remake my original (viral) video to show the effect of cannabis upon my Parkinson’s tremor in real time – i.e. showing my tremor gradually becoming calmer after I have taken the cannabis.  I have written most of the script already, I just need to review it and then rehearse it.

I take the dog for her morning stroll, and then setup the camera and tripod in the lounge, load the script into the teleprompter app on my iPad and setup the radio microphone – I’m all ready to go!

I switch off my DBS for this video, and it’s an unpleasant reminder of how bad things are without the electricity.  I film myself in a single take – it just shows you how much my DBS affects my voice;  I bank on about a dozen (or more) takes when I film my weekly vlogs, because of my voice being weak and strangling my sentences.  Filming finished, DBS back on, what a relief!

My tremor (with DBS on) is pretty well contained today, as is dystonia.  Dyskinesia is manageable (as usual).  Balance and walking aren’t too bad.  I’m still aching all over from Sunday, and hoping I’ll be feeling better by the end of the week.

I load all of the footage onto my MacBook, and get a move on with the editing.  By the time my wife has got home from work, it’s pretty much finished aside from a little “tarting up”, which I have decided to do tomorrow morning.  I ask my wife for her opinion, and get a “thumbs up”, which is always nice.

Dinner, beer, an episode of Homeland on Netflix, and an early (ish) night.

I have committed to producing a video showing the medicinal effect that cannabis has upon my Parkinson’s Disease tremor, so want to get it done this week.  Part of the video will be speeded-up footage showing how my tremor is calmed over a 15-20 minute period, so I need to film a stopwatch that I can show on the screen alongside me.  I setup the camera in the kitchen and set it recording the stopwatch function of the system clock on my iPad, a fairly simple thing to do (you’d think!), but I end up having to film it 3 times because of stupid errors that I made.  I also make a start on a script for the video, and start planning the shots that I want to get – I’m hoping to film it all tomorrow.

I also spend some time updating my wife’s MacBook Pro to the latest version of the operating system, and then try (successfully) to record the Viceland documentary that I recently appeared in, by capturing the video as I streamed it in the web browser.  At least I now have a copy to keep!

I desperately need a haircut and a shave, especially since I’m going to be filming myself tomorrow, so I get the clippers and a new razor out, and spend the best part of an hour tidying myself up.

My tremor is still fairly well contained today, even though my legs (and my arms) are aching and I’m still absolutely exhausted from walking around Great Yarmouth on Sunday.  My walking is somewhat better (less wooden) than it was yesterday, and I feel much steadier when I walk the dog.

I am walking very stiffly today – it seems that I overdid the walking business yesterday, and my legs have just about seized up!

We are off to Hevingham for an hour or two this lunchtime, to visit my wife’s eldest son and his fiancee, but really so that we can see our granddaughter.  I take the dog for her morning walk (more like a waddle in my case) and then we jump in the car and go.   Tremor is back under control today, which is a surprise to me – I had expected it to be a problem because usually my symptoms increase when I am fatigued, and I knew I was going to be feeling the effects of overdoing things yesterday.

When we get back home again, it’s about all I can do to sit on the sofa and search online for some tile spacers that I need to help finish the bathroom tiling – another day passes without me making any progress!  While I’m exerting myself on the internet,  my wife is busy working down on the allotment, planting out some more seedlings.  I waddle around the field with the dog and then go to see how she’s getting on.

While my wife prepares dinner, I download some updates for her Macbook Pro – it’s hard work, all this computer setup lark!  After dinner, I crack open a bottle of beer, self-medicate (cannabis) and we settle down for an evening in front of the telly.

We are off to Great Yarmouth this morning.  My wife’s sons are taking part in the Tour de Broads – a bike ride in aid of charity.  Her eldest son is riding for Macmillan, and her youngest is riding for Nelson’s Journey.  We are at the start line for their departure just after 9am.  While they are doing the bike ride, we walk around the town, stopping off once for some breakfast, and again at Starbucks for a coffee.  They finish the 25 mile course soon after 11am, and it feels (to me) like we have walked about the same distance.  My walking is better than it was yesterday, but not by very much.  Happily, my tremor, dystonia, dyskinesia, voice, balance, muscular weakness and stiffness are not giving me any great cause for concern.

My wife and I head back towards home after seeing them cross the finish line, and we stop off in North Walsham to grab a few bits and bobs from Lidl.

I intended to get on with the bathroom tiling this afternoon, but I am absolutely exhausted by the time we get through the front door, so we decide on vegging out instead – I light the fire (my wife is feeling the cold) and we watch a film on Netflix.  I just about make it through the film without falling asleep – it’s a pretty close run thing, though.   Tremor and dystonia are starting to bother me, too – probably because I’m so fatigued from all of the walking we did this morning – I self medicate with a little cannabis and crack open a beer.

We are both up, dressed and downstairs by 7.45am.  Not for any good reason other than we woke up early.

I want to get on with the bathroom tiling today – I made a rash statement last weekend that I would have it finished by my birthday.  Suddenly the 15th of May seems alarmingly soon!

Before I start tiling, I sit down and check my email (nothing important) and then post links to my latest vlog on Facebook, Instagram and Twitter.  Then I try to find a way to record the Viceland documentary that I appeared in (“Stoned”) so that I can keep a copy of it.  Our Smart television is supposed to be capable of doing this, but I’m damned if I can make it work.  I spend entirely too much time on this, and nothing to show for it at the end.

I hunt out (with help from my wife) a tub of tile adhesive, and prepare to turn the bathroom into a no-go zone.  I have, by this time, lost my motivation – indeed, fiddling about with the telly for so long almost made me lose the will to live – and it only takes my wife to suggest that I give it a miss today, and I’m putting stuff away.  Maybe tomorrow…

We both take the dog for her afternoon stroll (my wife took her this morning), and call by the allotment on the way back home.  We spend half an hour weeding and hoeing, so now I feel that at least I have done something useful today.

Tremor isn’t too bad today, but my voice is quite weak and my walking isn’t too good.  I feel exhausted, and can feel another early night coming on.

I have decided to make my weekly vlog on the subject of environmental toxins and Parkinson’s Disease.  This is a subject that is close to my heart, and also one that (I think) was requested by someone last week (but I cannot find the request!).  So today I will be mainly researching and filming!

I have a fair amount of tremor breaking through on both sides today, which makes using my MacBook a bit of a challenge – I keep double-clicking on things that I don’t mean to double-click on, and it’s driving me bonkers.  I persevere and manage to research my subject, and then write a script for my video.  I rehearse my script and time myself – I like to keep my vlog to around about 5 minutes, and my timing confirms that I’m almost bang on the 5 minute mark.

I load the script into the teleprompter app on my iPad, set up the camera and tripod and film myself – I’m keen to finish work on my vlog by the time my wife gets home from work.  My voice is a little better than usual, and I manage to shoot the footage I require without too much trouble.  My only problem today is tremor, which gets much worse when I’m in front of the camera.  I consider increasing the voltage on my neurostimulator, but I am concerned that I might impact my voice, so I decide to put up with a bit of shaking.

I load the video onto my MacBook and edit it in double-quick time.  Even allowing for the correction of a minor error that I discover just before uploading the video to my YouTube channel, I have finished work by the time my wife gets home and I’m pleased about that.

We go grocery shopping at Lidl in North Walsham, watch an episode of Homeland on Netflix when we get home and then have an early night.

Today I am determined to complete my video review of Charlotte’s Web Everyday Plus CBD oil, but I have a few things to do before I get stuck into it again.  First and foremost, there is the serious business of tea and Nutriblast drinking, and then there is the dog’s morning walk.

After exercising the dog, I finish setting up my wife’s MacBook Pro and then have a search online for information relating to my weekly vlog – someone suggested a vlog topic last week and now I can’t locate their suggestion.  Usually people leave a comment on my YouTube channel requesting that I cover a certain subject, and I remember receiving a message last week with a really interesting suggestion that I now cannot find.  I check all of my social media accounts, all of the Facebook Parkinson’s and Deep Brain Stimulation groups and all of the Parkinson’s Disease forums that I’m subscribed to, but it’s a bit like looking for a needle in a haystack.

I (eventually) get around to editing my review, and am just finishing it off when my wife arrives home from work.  I’m not really very happy with the end result (I’m fussy) so I am on the verge of scrapping it and starting again.  I get my wife to view the video and give me her honest opinion – she thinks it’s okay, so it must be okay!  I load it to my YouTube channel and publish it.

I have emails and tweets to respond to today.  I have received a tweet from a medical marijuana activist in Los Angeles, wanting to know if I would make a video for them to use on their website to demonstrate the effects of cannabis on my Parkinson’s Disease symptoms.  I had a bit of a think about it, but then sent them an email saying that I would do a re-make of my viral video for my YouTube channel, and permit them to embed the YouTube video on their website – so I have that task pencilled in for next week.  I also had an email from the PatientsLikeMe website wanting me to answer a whole load of questions about my condition and medicinal cannabis/CBD oil – they want to do a feature about me on the website.  I sit myself down and plough through the questions, answering them as fully and as informatively as I can and then email them back, along with a couple of photos that they want to print alongside the feature.

I was going to finish editing my video review of Charlotte’s Web Everyday Plus CBD oil today, but somehow the day has run through my fingers, so I’ll now do it tomorrow instead – I have been busy trying to set up my wife’s MacBook Pro (which still isn’t finished) and everything else will just have to wait.

My tremor has been breaking through on my left side again, following the recent pattern of being more troublesome in the morning and then all but disappearing during the afternoon.  My voice is still very weak and strained sounding and my walking is still a little stilted, but other than that I’m feeling pretty good!  On top of that, my wife’s car has passed its MOT test which is very good news!

My wife’s car is going in for it’s MOT test tomorrow, so I need to do something about my car (so that she can use it).  My car hasn’t been driven for about 3 weeks or so, and the security system has flattened the battery – I need to charge the battery and then try getting it started.

I manage to locate some tools (which is no mean feat) and soon have the battery disconnected.  I struggle a bit with lifting the battery out of its place under the bonnet (I’m not as strong as I used to be) but I manage it, and carry it into the house to put it on charge.

After taking the dog for her morning walk, I sort out the video tapes and import the footage that I shot for my review of Charlotte’s Web Everyday Plus CBD oil to my MacBook.  I make a start on the editing, but it soon becomes apparent that I’m not going to finish it today.  I have a sort through the photos on my iPhone and iPad and find an image or two that I may be able to adapt for use as a logo for my YouTube channel.

Symptom check!  Tremor – breaking through on both sides this morning, but not so bad this afternoon.  Dyskinesia and dystonia – present but under control.  Voice – absolute pants!  Balance is okay, but walking isn’t.  Muscular weakness and stiffness – not too bad.

It’s been a long time since I did any computer stuff, but I spend most of today sorting out my wife’s new (second hand) MacBook Pro, which she has bought from her youngest son’s fiancee, to use for her soft furnishings business.   I want to get the hard drive backed up to my network backup disk, and then set the laptop up as new, with a fresh install of the operating system and all of the application software that she needs for preparing estimates, invoices and company accounts.  I had hoped to be able to have it finished by the time my wife returned home from work, but I had reckoned without the time taken to backup a 250Gb hard drive across my home network – that’ll teach me to backup over a WiFi connection.

My tremor is back again today (left leg) but not as bad as usual, and it settled down and went away this afternoon.  My walking was a little wooden when I walked the dog this afternoon, but other than that my symptoms have been remarkably well contained today.

I have some editing to do for my review video of Charlotte’s Web Everyday Plus CBD oil, and I anticipated being able to at least make a start on that this afternoon, as well as wanting to design a logo for my YouTube channel so that I can make my videos instantly identifiable as mine – I am still coming cross instances of my videos being posted by other people on their social media accounts, and it irritates me somewhat!  In the end I haven’t managed to do either of those things, so I’ll (hopefully) do them tomorrow.

Another good night of sleep and I’m awake at 6.30am.  I decide to have a lie-in, and finally drag myself out of bed a few minutes before 8am.

My wife and I have a fairly lazy morning – she is meant to be measuring up for some curtains for one of our neighbours at 11.30am, so there’s little point in getting stuck in to tiling the bathroom until after she has done that.   As it happens, our neighbour forgot that she had made an appointment and wasn’t there when we called round, so it was a wasted morning – never mind, we both enjoyed our time off!

My wife took the dog for a walk while I mixed up the first load of adhesive and stuck the first lot of tiles to the wall.  Then she took over adhesive mixing duties while I concentrated on tiling.  We managed to get a fair few tiles glued on, and we are starting to get a feel for the finished room – it gives us both a sense of achievement.

My tremor is much more under control today, so no adjustment required.  My voice is much stronger also, and my balance and walking are improved.  The only fly in the ointment today is muscular weakness in my upper arms, which is quite painful when I’m overreaching whilst putting the tiles on the wall.

We are going to have dinner with my wife’s youngest son and his fiancee this evening, so we finish work at a reasonable time, clear the decks and then drive over to Hevingham.