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.