Month: June 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another early night required!

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

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

I definitely feel an early night coming on.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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