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:
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.
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.
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.