Author: Ian

I’m awake bright and early, and get up around 7.30am, leaving my wife to catch up on her sleep.  I check my email, reply to a couple of YouTube messages and post links to my latest vlog on Facebook, Instagram and Twitter.

Tremor  in my left leg is very close to the surface, but has been a whole lot better since I increased the voltage on my neurostimulator.  I haven’t had any dyskinesia in my neck since I changed the setting, so that’s a result.  I may try another small increase tomorrow.  Dystonia is under control, but my balance isn’t great today and my walking could be better.  Voice is weak and soft, but I think I have to learn to live with that as a consequence of tremor control.

I want to make some more progress with tiling the bathroom this weekend, so I spend today cutting tiles to size ready to stick them on the walls tomorrow.  My wife leaves me to it while she plants out a load more seedlings at our allotment.

I clear away my tiling debris (I’ve had enough by late afternoon) and my wife and I go grocery shopping at Lidl in North Walsham.  Then it’s time for dinner, a beer and Homeland on Netflix!

 

We watched the “Stoned” documentary on Viceland last night.  Whilst it took an intentionally humorous and lighthearted look at cannabis culture, I felt that the medicinal effects were obvious, and hopefully will serve to raise awareness in the age group that the program is intended for (and that’s at least 30 years younger than me!).  If you want to watch this programme, it is currently available on the Viceland website – scroll down to the “free episodes” section and click on “Stoned”.

I have decided to vlog about the effects of diet on Parkinson’s Disease this week – I started researching and scripting it yesterday, and spent the morning finishing the script off (after drinking tea and Nutriblast, and walking the dog).  My voice is badly affected today, so I decide to lower the voltage (left side) on my device to see if that helps me (just while I’m filming).  It does seem to help my voice a little, but tremor in my left leg is having a field day.  I set up the camera and tripod in the dining room (just for a change), load the script into the teleprompter app on my iPad, have a quick rehearsal and then film myself.  I manage to get satisfactory footage with only about 7 takes, so that’s fairly good these days.  I switch my device back to its normal voltage – it’s a relief to have the tremor back under control again.

I load the footage onto my MacBook and edit it in double quick time.  I have finished the editing and am uploading my vlog to my YouTube channel by the time my wife returns home from work.

We are both feeling extremely tired at the moment, so it’s early baths, a quick episode of Homeland on Netflix followed by an early night.

The documentary (called “Stoned“) that was filmed in Amsterdam 2 weekends ago, has been broadcast on Viceland (Sky, channel 153, or Now TV).  I don’t have Sky or Now TV, so Vice.Com sent me a “one-time” link so that I can watch it online, which my wife and I will do this evening – I’ll tell you what I think tomorrow!

My tremor (left leg, mainly) is giving me grief this morning (again).  I put up with it for 2 or 3 hours, and then calm it with a little cannabis.  The cannabis is wearing off now, and tremor returning, so I decide to increase the voltage (left side) on my neurostimulator by 2 increments (0.1v), so now I’m receiving 2.5v on the left and 2.3v on the right.  I feel an immediate improvement – let’s hope it doesn’t trigger dyskinesia in my neck, as it has done previously.

One of my Facebook friends suggested (some weeks ago) that I vlog about diet and Parkinson’s Disease.  I have been avoiding it (just a little) because I had doubts about whether I would be able to do the subject justice in a 5 or 6 minute video, but I have decided to give it my best shot – it just won’t be at a very detailed level.  So, today (well, this afternoon) I do a little research and make a start on the script.

A year ago today I was having my Deep Brain Stimulation operation, so Happy 1st Anniversary!  I’ve stuck a bottle of bubbly in the fridge for when my wife gets home from work, and there’s always the possibility that a beer (or two) will be cracked open, too.  The operation took a little while to recover from, but even the recovery period was better than the twelve months before my surgery, when I was referred to the National Hospital for Neurology and Neurosurgery to have my suitability for DBS assessed.

Even though I had (by this time) discovered that cannabis could help to control my symptoms, the relief provided by my DBS has been a miracle for me.   It is good to have my tremor under control (mostly) without having to think about medicating myself.  When I do medicate (with cannabis – still not taking any prescription Parkinson’s drugs) there isn’t the same sense of urgency that there used to be, because when tremor does break through it is (generally) just a shadow of its former self.

Having said that, today my tremor is breaking through quite strongly in my left leg.  It is (most likely) because I’m still tired from tiling the bathroom on Sunday and Monday, but I am considering adjusting my neurostimulator to see if I can contain it without provoking any side effects.  I’ll wait another couple of hours before deciding because it seems to be getting better as the day wears on – this morning my left leg was having a proper dance, but now it’s more of a gentle tap-tap-tap on the floor.  Dystonia in my right foot is present, but not bothering me enough to consider increasing the voltage on my right hand side – dyskinesia is also present (but manageable) in my right arm, and I definitely don’t want to cause a flare up of that!

I’m walking quite woodenly when I take the dog for her walks today, and I have to make a conscious effort to stop leaning forward and to lift my feet a little higher.

I had intended to do some more tiling in the bathroom, but I’m feeling pretty whacked.  So, I thought I’d just cut some tiles ready for sticking to the walls, but what I ended up doing was a little planning – drawing lines on the walls so that I know where my tiles need to be placed, and calculating the number of tiles required to finish the job (to ensure that I have purchased a sufficiency, which I have).

For the first time in a long time I am woken by my alarm going off at 7am – I’m usually awake before it goes off, so I guess I must have been tired.  I prise myself out of bed at a shade before 7.30, get dressed and go downstairs to feed the dog and make the tea/coffee.

Adverts are all over the internet for Viceland’s “Weed Week”, and the documentary that I was involved with in Amsterdam a couple of weekends ago.  It is due to be aired tomorrow night at 10pm, so I send the Production Executive an email to find out if they can send me a link to watch it (I don’t have Sky or Now TV).  I am also chasing money from them today – I forked out for almost £120 of expenses when we travelled to Amsterdam, and Vice.Com said they would reimburse me.  It’s been 2 weeks since I sent them the receipts (via email) and the money hasn’t been forthcoming!   I receive an assurance that it is being dealt with.  I’m also assured that I will be sent a link to the documentary after it has been aired tomorrow night.

I am extremely tired today, and I do very little apart from walking the dog (twice) and vacuuming downstairs.  Tremor is worse than it was yesterday and dystonia is mildly uncomfortable, but I’m not overly surprised.  My voice is still very soft and weak, my walking ain’t great and the muscles in my upper arms are feeling sore.   I decide to medicate this afternoon – an internet friend sent me some cannabis suppositories to try last week (supposedly very fast acting and long lasting) so I give one of them a go.  Hellishly difficult to light! 😉

I’m planning on an episode of Homeland on Netflix, followed by an early night – see if I can get some energy back and continue with tiling the bathroom tomorrow…

I wake at 7.30am after a solid night’s sleep.  I consider getting up.  I blink,  and it’s 8.45am.  I want to make some more progress with the bathroom tiling today. so I get up and go downstairs to check my email and social  media before I get my hands dirty.  I also have a couple of cups of tea, a Nutriblast and then take the dog for a walk.

We are having visitors for dinner this evening – my wife’s two sons and their respective partners, our granddaughter, my wife’s ex-husband and his partner – so my wife goes off to North Walsham to buy the ingredients for a Thai green curry, a vegetable lasagne and a lemon cheesecake, leaving me to get on with the bathroom tiling.  I work away for a couple of hours, and then I have had enough – fatigue is causing my tremor to emerge (big time), I have got terrible back pain (again) and I’m just plain tired out.  It’s only when I try to do something like this that I realise how much energy Parkinson’s Disease has stolen from me.  I take the dog for another walk before I sit down – once I sit down, it’s going to be difficult to stand up again!

Whilst I have been working away, my wife has been taking it easy in the kitchen – not only making the curry, lasagne and the cheesecake, but a load of Easter fairy cakes as well (very sweet and sickly, yet strangely irresistible).

Our visitors arrive and, in no time at all, the food is scoffed, drinks are drunk, and enormous quantities of chocolatey sweetness is consumed.

I self-medicate (cannabis) after an hour or so – my tremor is still breaking through, and muscular pain in my arms is most uncomfortable.  The cannabis works its little miracle and I feel a whole lot better.

By the time our guests depart (which isn’t very late) I could happily go to bed, but we have our baths and watch an episode of Homeland on Netflix instead.

More progress with the tiling of the bathroom is on the cards today, just as soon as I’ve finished my cup of tea, and Nutriblast – my wife walks the dog this morning.

We work together for about 3 hours – mixing adhesive, cutting tiles to size and gluing them to the walls in the bathroom. My back is absolutely killing me, I’m not sure why – it’s not as if I have done any heavy lifting. Possibly it’s due to muscular tension from trying to keep my tremor under control – it’s still a bit of a problem in my left leg, occasionally in my right arm, and it’ll probably be worse tomorrow because I’ll be fatigued from working on the bathroom today.

We call it a day, have a cursory tidy up and then go to the beach at Trimingham to let the dog have a bit of a run (and for the wife and I to get a breath of fresh air).  My balance and walking are noticeably better today.

When we get back home we decide to have an early dinner, have baths and then watch a couple of episodes of Homeland on Netflix.

I want to get down to the allotment today – I have noticed the weeds are growing well when I have been down there with the watering can this week, and it’s amazing how quickly they can take over if you take your eye off the ball.

First things first, though.  I take the dog for her morning walk, and then spend some time posting links to the article that I wrote for ConsumerHealthDigest.com, and which was published yesterday.  I also post links to my latest vlog about Parkinson’s Awareness Week.  By the time I have finished doing this, a large portion of the day has passed, and my wife’s patience is wearing thin – there are so many more important things that I could (should) be doing.

I disappear off to the allotment, watering can in hand, and spend an hour hoeing and weeding between the vegetable plants.

Returning home, I decide to locate all of the equipment that will be required for making progress with the bathroom wall tiling.  I would still be searching for it all now if it wasn’t for my wife – she knows where everything is (pretty much).  I do a little tile cutting in preparation for sticking them to the wall, and then clear away for the day – the light is starting to go, and there’s little point in mixing up a load of adhesive at the end of the day.  I’ll start afresh tomorrow morning.

I have been umm-ing and ah-ing over my vlog for this week.  I want to do something to raise awareness, but I don’t want to be too negative about the condition.  It is difficult to raise awareness, though, if you sugar coat everything – and that’s exactly what I (generally) do.  I started scripting it yesterday evening, and got my wife to read my opening paragraphs.  She felt that I was being too negative, so I really need to change the slant of things a little.

I sit down when I get back from the morning dog walk, and research Parkinson’s Awareness Week a little more to see if I can get some inspiration.   The Parkinson’s UK website wants people to raise awareness by making videos telling people what a cure for Parkinson’s would mean to them, so I decide to include that idea in my vlog.   I finish the script and set up the camera and tripod in the lounge.  It takes me a good few takes until I have something that I’m (relatively) happy with – my voice is playing up again, strangling my sentences and disappearing on a number of occasions.   I manage to get it loaded onto my MacBook, edited and uploading to my YouTube channel by the time my wife gets home from work.   She thinks I made a depressing vlog, and I think I just told it the way it is – but she is probably right!

We go to Stalham this evening to see my mother, armed with a bottle of advocaat, a huge box of chocolates and some tulips – it’s her 83rd birthday today.   Her Parkinson’s is being kind to her on her birthday – she is having a much better day than we we last visited her.

I am going to finish the script for my video review of Charlotte’s Web Everyday Plus CBD oil this morning, and get it filmed this afternoon – so I sit down on the sofa with my iPad, when I return from taking the dog for her morning jaunt, and rattle off a few paragraphs.

I transform the kitchen/dining area into a studio and set up the camera, tripod and radio microphone, load my script into the teleprompter app on my iPad and rehearse it a couple of times to check my timing.  All seems to be okay, so I try a few takes and then play it back to check it.  I must have positioned the lapel microphone badly because there is lots of sibilance on the audio and it is basically unusable.  I reposition the microphone and try again.   I thought I would have problems filming today, because of the weakness of my voice over the last couple of weeks, but it doesn’t give me too many problems and I manage to capture some reasonable footage with only 4 or 5 takes.

I took a dose of the oil as part of the filming of the review, and it does help to calm my left leg tremor as well as threatening to send me to sleep (again).

I clear away the camera equipment and sundries and decide to leave the editing of my review for another day – I’m feeling really tired and unmotivated at the moment.  I also need to have a think about the subject for my weekly vlog, and (perhaps) start to script it.  I want to do something for Parkinson’s Awareness Week, but it’s going to be a struggle to be honest whilst keeping positive at the same time.  Perhaps I can try to find the positive side to my illness – there has to be one, right?

I have decided that I need to catch up with a few product review videos that I have been meaning to make for several months now.  First up is Charlotte’s Web Everyday Plus CBD oil, so I sit myself down with my iPad and start researching the product so that I can write a script for the review.   I write the opening part of the review – describing the product – but the rest of the script will have to wait until I have tried taking some of the oil.  So I take a dose of the oil which, according to the manufacturer’s website, is 1ml.  Information from the manufacturer suggests that 40 drops from the bottle’s built in dropper is about 1ml, so I measure it out and take it.  Half an hour later I am feeling some effect from the CBD oil – it has reduced my left leg tremor (a little) and helped my anxiety (a little).  It doesn’t seem to have affected my muscular pain noticeably, and it feels a little bit like I have taken knockout drops – I think (at one stage) that I’m going to lose my fight against sleep!  I stay awake by taking the dog out for a walk – fresh air always helps!

It’s a bit late in the day to do any filming, so I will attempt to finish the script and film the review tomorrow.  I have received an email from ConsumerHealthDigest.com – they have reviewed my article on Parkinson’s and medicinal cannabis and want me to provide a title for the article, break it down into paragraphs, provide some sub-headings,  provide them with a short “Author’s Bio” and a profile picture.  I quickly re-jig the format of the article, add some sub-headings, dash off a brief biography, dig out a suitably flattering profile picture and email it all back to them.  Hopefully that will satisfy them.

It has been a grey day here in Southrepps, and it has rained a couple of times so I figure I don’t need to struggle to the allotment with the watering can today.  I vacuum downstairs, and that’s my day over with (almost).  All that remains is dinner (cooked by my wonderful wife), a beer (poured by me) and a little something (Homeland – excellent viewing) on Netflix.

I have a message on Twitter this morning from online magazine ConsumerHealthDigest.com, reminding me about an article that I had offered to write for the website a week or so ago (and then conveniently forgot about it).   They want to know when the article will be ready, so I make some excuses about how busy I have been just lately, and then commit to emailing them a copy by tomorrow.  At least the subject matter (my use of medicinal cannabis) shouldn’t present me with any problems!

I take care of the usual morning business (cuppa, Nutriblast, dog walk and PopMaster) and then compose an email to Thunderworks.com, thanking them for the ThunderLeashes that I received yesterday, and offering them the source footage for the spinning dog video that they are going to use in their advertising.  Then I set about writing the magazine article.  They want between 600 and 800 words, so I decide to write my account off the top of my head, do a quick word count and then adjust it as necessary!   My first stab clocks in at 590 words, so I’m almost there.   I pad it out a little bit here and there and end up with 750 words – that’ll do!  I email a copy to the magazine for approval, and feel pretty happy with myself for doing it so quickly.

I somehow find the energy to carry a watering can full of water down to the allotment, and to water most of the seedlings that we planted out at the weekend – I’d really hate them all to die from lack of a drink after all the effort we made to get them planted out.

My tremor is bubbling just below the surface today, but what’s bothering me is an internal tremor – feels like my bones are vibrating.  I’ve had it before (from time to time) but today it’s bothering me.  Dystonia in my right foot is also moderately uncomfortable.  Voice is absolute pants – it’s been really affected since my last DBS tune-up.  My walking isn’t much better, but it’s not quite as bad as it was yesterday.  Muscular weakness in my upper arms is really quite painful (and has been for a couple of days) – I think it may be due to the hoeing I did on Sunday…

My wife arrives home from work, and we go to Lidl in North Walsham to do some grocery shopping.

Home, beer, Netflix and an early night.

I slept well, even without cannabis assistance.  Hardly surprising, really, because I was completely exhausted after working down at our allotment yesterday.  I feel pretty stiff and creaky this morning, and it’s a fair bet that I won’t be doing very much today.

A package arrives by courier this morning, addressed to me.  I wasn’t expecting anything – couldn’t recall placing any orders online recently…  I opened the package to find 2 ThunderLeashes for the dog (one for our labrador, and one for my wife’s youngest son’s labrador) – payment in kind for giving permission for them to use one of my dog videos in a new advertisement.  I’m looking forward to seeing it – the dog’s going to be a star!   Our labrador is usually fairly well behaved on the lead (when she wants to be), but if she decides to pull, she’s very capable of pulling me along behind her.  The ThunderLeash is supposed to prevent the dog from pulling, so it will be interesting to try it out this afternoon.

I respond to a couple of emails and one or two comments on my YouTube channel, and then take a walk down to our allotment with a watering can full of water.   We don’t have any water on tap down there, so it all has to be carried, which is a bit of a pain.   The seedlings we planted out yesterday are all looking a bit limp – we could really do with a bit of rain!

I take the dog for her afternoon walk on her new ThunderLeash, and it works a treat – no pulling whatsoever.

I find the energy to vacuum downstairs, have a quick tidy of the kitchen and then that’s me done for the day (pathetic, I know!).

Another beautiful day dawns in Southrepps – it’s supposed to be the hottest day of the year so far, and the temperature reached 20 degrees Celcius yesterday!   I want to get some of our seedlings planted out at the allotment today.  Actually, I wanted to get them planted out yesterday, but the day flew by and I didn’t achieve it.

I walk the dog while my wife is working on a quotation for some curtains (even when she’s not supposed to be working, she’s working) and then we load ourselves up with seedling trays that have been sprouting in our conservatory-cum-greenhouse over the last few weeks, and carry them down to our allotment, which is just a few minutes walk away.

I’m feeling the strain already by the time we have walked there, so I know that I won’t be able to do very much.   My wife arms herself with a garden fork and sets about preparing the ground for planting – it hasn’t rained for a while and the ground is like concrete.  I follow behind her with a hoe, and soon we are planting out our cabbages, spinach, carrots and onions.  I manage about an hour and a half (which is about an hour more than I thought I would manage) and then return home, sunburned and shattered, whilst my wife works on for a while longer.

Tremor isn’t giving me too much trouble today – my worst symptoms are my walking (which is still pretty stilted), my voice (which is very weak) and my energy levels (which are very low).  I slump on the sofa for an hour or so, and then take the dog for another walk (even though it’s the last thing I feel like doing).  I am aching all over from my exertions at the allotment, and I know it’s going to take its toll on me for the next couple of days, but I simply can’t leave it all to my wife – she works hard enough as it is.

I have a long soak in a hot bath as soon as we have eaten dinner, and then it’s time for a beer and a little something on Netflix.

Today is Saturday, so it’s my day for sitting on the sofa and being cleaned around. It’s a beautiful day in Norfolk today, so it’s no chore to get out from under my wife’s feet and take the dog for a walk.

We are going to dinner at my wife’s youngest son and his fiancee’s house this evening, so my wife is making a rhubarb crumble to take with us for pudding.  We visit our allotment to check on the broad beans, onions and garlic, and to harvest a few sticks of rhubarb for the crumble.

I spend a little time posting links to my latest vlog on Facebook, Instagram and Twitter while my wife works her culinary magic in the kitchen, and then we load the car up with pudding and dog, and drive over to Hevingham for the evening, stopping off at Tesco in Aylsham for some tinned custard and a few beers (Hobgoblin).

My tremor is calmer today, thank goodness, and dystonia is less troublesome.  Balance is okay (ish), but my walking is still a bit rubbish.  My voice is weak and disappearing from time to time – perhaps as a consequence of using it so much yesterday whilst filming my vlog. I’m feeling very tired again and have been fighting off sleep all afternoon, so I think another early night is on the cards…

I slept well last night (cannabis assisted), waking up just a few minutes before my alarm went off at 7am.   I have my vlog to do today.  I had intended to start scripting it yesterday but didn’t get around to it, so I have a busy day ahead of me, vlogging about Amsterdam.

I get the necessary morning activities out of the way first (tea, Nutriblast, dog walk, PopMaster) and then sit down with my iPad to concoct a script for my vlog about last weekend’s activities.  It doesn’t take me too long, and I’m soon able to load the script into the teleprompter app on my iPad and have a rehearsal or two to see how long it takes for me to read it – I like to keep my vlogs between 4 and 5 minutes if I can, because I don’t think the majority of people have time to spend watching more lengthy videos.  It can be a bit of a challenge to tackle a subject in less than 5 minutes, though.

I set up the camera and tripod in the lounge, adjust the lighting and manage to film myself without too much trouble (about half a dozen or so takes).  I load the footage onto my MacBook and edit the video (after taking the dog for her 2nd walk of the day), adding in a couple of stills that I took while we were in the hotel at Schiphol airport.   My wife arrives home from work, so I get her to review it (she approves, even though it does poke fun at her), upload it to my YouTube channel and publish it.

Time to relax with a beer, Netflix and some cannabis – my tremor has been running riot today (both sides, so it’s more  than likely related to how tired I am rather than progression) and dystonia in my right foot has also been bothering me.  My balance seems ok, but my walking has definitely been a bit pants.

I am out of bed a little earlier than usual today (but only a little) – I’m expecting a plumber at 8.30am to remove our old cast iron bath, and replace it with a modern pressed steel one.  8.30am soon rolls around, and the plumber has arrived.  I’m impressed – a tradesman who turns up when he says he is going to!

I help the plumber carry the cast iron side panel down the stairs and then I bag up the fibreglass insulation that I had packed in around the cast iron bath in a vain attempt to stop it from sucking all of the heat out of the hot water, but that’s about my only involvement in the job – I just keep myself busy making tea (and drinking my fair share).  I also comfort the dog while the plumber breaks the old bath up with a sledgehammer – it really does make one hell of a racket, and she doesn’t like it one bit.

I walk the dog while the plumber gets on with the job.

In no time at all (or so it seemed) the old bath is languishing (in 4 pieces) outside the front of our cottage, and the new bath is plumbed in and ready for use this evening.  The plumber has also fitted the new basin taps, which he didn’t originally quote for, and then asked me for less money than he quoted for fitting the bath alone, saying that it had taken him less time than he thought it would.  Plumbers like this are a rare find, and I give him more than he asked for – very pleased!

I deal with a few emails that are waiting for me, including one requesting the use of one of my videos of the dog for an advertisement – I sign the consent form and email it back to the company.  Perhaps our dog will have her 5 minutes of fame…

Tremor is really quite persistent in my left leg today, causing my laptop to jiggle around a fair bit as I try to type – not very helpful.   I consider increasing the voltage on my device to counteract it, but opt for self-medication (cannabis) instead – I’ll give myself one more day to recover from our Amsterdam trip last weekend, and make some adjustments tomorrow if it isn’t any better.  This is the first day this week that I haven’t been fighting off sleep in the afternoon, so I must be recovering!  Dystonia and dyskinesia aren’t bothering me (too much), balance and walking are better today (and my legs have stopped aching), and my voice isn’t a worry (principally because I’m not having to use it very much – it will probably be more of a problem tomorrow when I try to film my weekly vlog).  Muscular stiffness and weakness are pretty uncomfortable, but I’ll live!

We have our granddaughter here for the day today, so some preparation is required.  My wife constructs the industrial sized fireplace guard and I install a stair gate at the bottom of our staircase.

I also need to prepare for the replacement of our bath – the plumber is coming to remove our old cast iron bath and replace it with a modern pressed steel bath.  I said that I would remove the bath side panel before he arrives, so I need to do that today – it’s no mean feat, because the side panel is  cast iron also, and weighs as much as I do (if not more).  I also have to collect the new bath from the plumber’s merchant in Cromer – I begged a favour from one of our neighbours, and he very kindly agreed to collect it for me in his 4X4.

My wife disappears off to Hevingham to collect our granddaughter, and I take the dog for her morning stroll.  My legs are still aching, but they seem a little better than they were yesterday.   Left leg tremor is suggesting to me that I should increase the voltage on my neurostimulator, but I leave it alone for the time being because it could just be that I’m still recovering from the weekend.

I visit the plumber’s merchant in Cromer with my neighbour and collect our new bath, which is now in front of the fireplace in our lounge – it’s very attractive!

My wife’s parent arrive this afternoon to see their great-granddaughter, and I busy myself with removing the bath panel while they (and my wife) entertain her.

We are all set for the plumber, who should be arriving around 8am tomorrow.  We have dinner, watch some Netflix and get (another) early night.

We had an early night last night, and I slept really well so you would think that I would feel refreshed this morning.  I still have aching legs (self inflicted – I knew I was overdoing it when we were walking around Amsterdam on Sunday afternoon) and I still feel exhausted from the lack of sleep on Saturday night.  I guess that it’ll be another couple of days before I start feeling “normal” again, so I’m just taking it easy today.

Tremor seems to have calmed down (a little) since yesterday, and many of my other symptoms are also less troublesome than they have been – dyskinesia and dystonia are well under wraps, my balance is less bad, my walking is (slightly) less stilted, and my voice isn’t quite so weak and strangled.  Muscular weakness and rigidity are still troublesome, but no worse (or better) than usual.

I walk the dog (twice), and that’s about it as far as physical exercise is concerned.  The rest of my day is spent sitting on the sofa in the lounge, laptop on lap, responding to emails and messages on social media, and putting together an expense claim to email to Vice.com for taxis, additional baggage charges etc., from the weekend.   I also find myself fighting off sleep again – this time there is no cannabis involved, so I can’t blame that.  I feel another early night coming on…

I’m absolutely wiped out today.  I switch the 7am alarm off, and go back to sleep for another hour.  I get up just before my wife leaves for work.  I ache all over – especially my legs (from all of the walking I did in Amsterdam yesterday).  My tremor isn’t as bad as I expected it to be, but it is still breaking through on both sides from time to time, particularly in my left leg.  I’m not going to be doing very much today – just recovering from walking.

I need to ensure that we have the replacement bath and taps available when the plumber comes to fit them on Thursday – I ordered the taps a week ago, and there’s still no sign of them, and the company that I ordered the bath from have cancelled my order due to lack of stock!  I ring the company that is supposed to be supplying the taps – they are very apologetic and promise to have replacement taps delivered to me tomorrow.   I manage to find a company that can supply me with a replacement steel bath before Thursday – only problem is that I have to collect it from their depot in Cromer, and neither of our cars is big enough to carry it.  I will have to see if I can beg a favour from a neighbour who has a 4X4.

I take the dog for a walk, catch up with my blog entries from the weekend and self-medicate with a little cannabis.  The cannabis improves things tremor-wise, but relaxes me to the extent that I am fighting off sleep all afternoon.  The second dog walk of the day perks me up a bit, but I’m flagging again by the time my wife gets home from work.  We have dinner, I crack open a beer (Hobgoblin), and then we both get a very necessary early night.

We are awake relatively early (given that we didn’t get to bed until gone 4am) and we are downstairs and having breakfast by 10am (we actually thought it was 11am because we accounted for the 1 hour time difference between the Netherlands and the UK without realising that our iPhones had already done so!).  We bump into the Production Manager (who looked after us really well last night) who arranges for us to be given a fistful of Euros for food, drink and travel expenses and tells us to go into Amsterdam and enjoy ourselves.  So, today we are being tourists (albeit, in my case, a fairly shaky tourist – must be because I’m tired!).

We decide to travel to the city centre by train – it just feels wrong to be spending over €50 each way on a taxi when we can get 2 day returns on the train for less than €20.  It’s been a long time since I have been able to claim expenses!  We wander around the city centre for a while, stopping once for coffee, once for a beer, and then decide to take a boat trip around the canals (like real tourists do).  We have a very pleasant hour long trip (I’m extremely grateful for the opportunity to sit down) and then catch a train back to our hotel at Amsterdam Schiphol Airport.

Back at the hotel we have a little rest before having a bite to eat in the hotel restaurant, and then we are ready to check-out and walk to the airport to catch our flight home.

 

I have an email from Vice.com sitting in my inbox when I wake up this morning.   We will be travelling to Amsterdam this afternoon to shoot the cannabis/Parkinson’s documentary – so much for Barcelona!   I email them back requesting the flight tickets, and set about getting ready to leave.   My wife’s youngest son and his fiancee agree to look after the dog until we get back on Sunday evening, so I arrange for a taxi to pick us up from Hevingham to take us to Norwich Airport, and pack a few bits and pieces in an overnight bag.

An email from Vice.com arrives with confirmation of our flights, so I check us in online and print off our boarding cards.

We drop off the dog, jump into our taxi and we are soon at Norwich Airport waiting to board our flight.  On arrival at Amsterdam Schiphol Airport we are expecting someone from Vice.com to meet us and take us to our hotel.  Given the organised chaos that has been their hallmark thus far, I can’t say that I was too surprised to find that nobody was waiting to greet us.  A couple of phone calls later, we are directed to walk to our hotel, just a few minutes walk from the airport.  All of this rushing around has had quite an effect upon my tremor, which is breaking through on both sides, so it’s a relief to get checked in at the hotel and relax in our room for a few hours.  We are due to travel into the centre of Amsterdam at 10.30pm tonight – filming is taking place in a coffee shop, after normal trading hours – so we grab something to eat in the hotel restaurant.

At 10.30pm we are bundled into a taxi along with a few of the Vice.com crew, and driven to the coffee shop.  Filming goes on until almost 5am but my involvement is over by 3.30am, and my wife and I are bundled into a taxi back to our hotel to grab a little shut-eye.

Another 24 hours have passed and we’re still none the wiser as far as the filming of the Vice.com documentary about cannabis and Parkinson’s is concerned.  I waited until late morning before sending a slightly sarcastic email to my contact there, saying that I assumed we weren’t flying anywhere today (a fair assumption, given that it was gone 11am and the flight from Norwich was supposed to be shortly after 5pm).  I did receive an apologetic email telling me that the shoot was now scheduled for Sunday in Barcelona, and that we would fly out Saturday evening, and fly back on Sunday evening.  It’s now 7pm and I have heard nothing more, so I an assuming that nothing will happen this weekend now.  It’s a bit of a flipping nuisance really – my wife and I have both had our weekly schedules completely screwed up for no purpose.

I get on with editing my weekly vlog, upload it to my YouTube channel and publish it.

I spend the remainder of the afternoon trying (unsuccessfully) to find a supplier that can deliver a bath to me before next Thursday (I had ordered a bath for delivery on Monday, but the firm cancelled my order due to lack of stock).  I was expecting my bathroom taps to be delivered today, but there’s still no sign of them, so I send an email to the firm asking for confirmation that they have been dispatched to me – response awaited!

It’s not been a great day, all things considered.  My tremor (left leg) has been bothering me again – probably due to the stress of everything else that is going on (or, more accurately, not going on) at the moment.

My wife arrives home with some beer, which I open with alacrity – I will shortly be indulging in a little cannabis, also.

We re supposed to be travelling to Amsterdam from Norwich airport tomorrow afternoon to shoot a documentary about cannabis and Parkinson’s for Vice.com, so I have a few things to sort out before we go.  My weekly vlog (which I would normally script, film and edit on a Friday) needs, at the very least, to be scripted and filmed today so that I can edit it and publish it by lunchtime tomorrow.  I have also received a message from the plumber saying he will be here to fit our replacement bath next Thursday, which would be absolutely fantastic if it weren’t for the fact that I have also received an email from the builder’s merchant from whom I have ordered the replacement bath, saying that they were unable to supply the bath that I had ordered for delivery next Monday! So I need to find an alternative supplier and get another bath ordered ASAP.

I get cracking on the script, which I manage to complete by lunchtime (with a brief, dog walk sized interlude), and then film myself (with many a re-take) this afternoon (with another, slightly longer, dog walk sized interlude).  I load the footage onto my MacBook ready for editing.

To add to my stress, Vice.com seem to be one of the most disorganised bunch of people that I have ever met, and I feel that we are being messed around.  They told me they would be sorting out our accommodation today, but this afternoon they still haven’t done so.  Then I get a phone call saying that they require a doctor’s certificate to proclaim that I am fit and healthy enough to travel to Amsterdam and spend a day in a studio filled with cannabis smoke.  Once I have explained to them that they have left it just a little bit late to decide that they need this, they change their mind and say that they will be satisfied with a signed disclaimer from me.  So we are still scheduled to travel to Amsterdam tomorrow and shoot on Saturday?  “Err, yes” she says, hesitantly.  “You don’t sound very sure”, I said.  “It could be in a different country, but the shoot is definitely going to take place this weekend” she said, reassuringly.   Five minutes later the phone rings again and she wants to know my availability for Monday instead!  I explain that Monday is not an option for me, so now I sit and wait to find out whether or not anything is actually going to happen this weekend.

My wife returns home from work, and we have a quick bite to eat before heading off to her youngest son’s house in Hevingham – I have promised to help him plan out the electric underfloor heating for his bathroom this evening, so that’s what I do!

I slept well last night, and feel fine.  Tremor is under control, along with dyskinesia and dystonia.  My balance seems okay, although my walking doesn’t feel too good.  My voice is weak, and I struggle to make myself heard when I’m talking to my wife this morning.  My mood is fine, too, but I’m feeling a distinct lack of “oomph” – no “get up and go” (it’s got up and gone), no “va-va-voom!”.

I take the dog out for a walk after I finish my cuppa and Nutriblast – at least I am still getting out a couple of times a day walking the dog.

I occupy myself by chasing up the plumber for a price on replacing our bath.  I eventually get hold of him on his mobile, and he tells me that he’s just about to sit down and work a price out for me (yeah, right!).  To be fair, he does send me a text an hour or so later, quoting a very reasonable price, which I immediately accept.  Now it’s just a matter of booking a day for the work to be done.

I receive an email from Vice.com confirming that the cannabis/Parkinson’s documentary shoot is to be on Saturday, and that we will be flying to Amsterdam on Friday evening and returning home on Sunday morning, flight times to be confirmed.  At least that’s a step in the right direction.

I vacuum downstairs and then prepare some vegetables for our dinner – it makes a change for my wife when she gets home, not to have to cook our meal from scratch as soon as she gets in from work.

I’m not feeling greatly motivated today, so I spend much of the morning (and quite a bit of the afternoon) sat on my backside with my MacBook on my lap, surfing the ‘net, replying to a couple of emails, chasing up a quotation for replacing our old cast iron bath and

checking in with Vice.com about the schedule for shooting their documentary about cannabis and Parkinson’s Disease (we are currently supposed to be flying to Amsterdam on Friday evening ready for shooting the documentary on the Saturday).  I do manage to walk the dog (twice) and vacuum downstairs, so all is not lost – it just feels like it, sometimes.

My tremor isn’t quite so close to the surface today, although I do get a little breaking through (from time to time) in my left leg.  My balance seems a little better, too, and so my walking is less stilted.  My voice is okay.  Dyskinesia and dystonia are under control, but I am feeling a little anxious (probably because I’m concerned about my lack of motivation) so I decide to self-medicate (CBD oil) this afternoon.  Sure enough, it calms things down a little.

I receive a parcel from my older brother (who lives in Nova Scotia) – a boxful of goodies!  Maple syrup, maple vodka, maple cookies, and a whole bunch of sweeties – looks like my diet’s out of the window for the next few days!

I’m feeling the effect of British Summer Time – I didn’t want to get out of bed when the alarm went off this morning, so hit the snooze button time and again until 7.30.

I’m expecting a plumber between 9am and 12pm this morning, to take a look at the bath replacement job that I put out to tender last week.  I take the dog for a quick walk when my wife departs for work and then sit down in the lounge with my Nutriblast to await his arrival.  He arrives at 11.50am, takes a quick squint at the existing bath and has departed by 11.53 declaring it to be “a simple job” and that the office would call me with a price.

I spend a happy afternoon shopping for bargain baths and taps on the internet, and find them even cheaper than they were the last time I looked (a month or so ago), so I’m well pleased.   I order the taps, but hold off on the bath until I have an acceptable quote – we haven’t got anywhere to store it, so it will be in the lounge or the conservatory until it can be installed, which can’t be helped but isn’t ideal.

I get a call from this morning’s plumber (we also had one visit on Saturday morning) and they quote an arm and a leg for the “simple job”, so they know what they can do with that!   Let’s hope Saturday’s plumber turns out to be more reasonable – I’ll chase him up tomorrow.

I take some of the Olimax 7% CBD oil that I reviewed last week because I feel that my tremor is very close to the surface today, and my dystonia is also making itself felt.  My voice is better today, but my poor balance causes me to catch myself several times – my walking is pretty wooden, also.  The CBD kicks in quite swiftly, and I’m soon feeling more relaxed – my balance is still pants, though.

We try to have a bit of a lie-in this morning because of our late night last night, but at 9am someone is ringing our doorbell to deliver a large box of flowers, sparkling wine and truffles for my wife from her youngest son and his fiancee for Mother’s Day.  So we get dressed and begin the day.

I expected to be aching all over after my exertions yesterday (washing both cars) but Parkinson’s can be so unpredictable and although I’m feeling tired, I’m not aching.  My tremor is jerking my left leg around (as usual), but my right side is well controlled.  My balance is not to bad, but my walking isn’t great.  My voice isn’t very strong, but it’s better than it has been of late.  Dystonia and dyskinesia are both well contained.  All things considered, I’m in good shape!

We go to Stalham at lunchtime to see my mother and give her some flowers and chocolates for Mother’s Day.  She isn’t having a good day (she has advanced Parkinson’s) and is having trouble talking, is drooling badly, her balance is shot and she’s generally feeling pretty miserable.  While we are there, she pays a visit to the toilet and ends up having a fall – no damage done, but she’s shaken and says that she feels like giving up.  Heartbreaking, but I can identify with how she’s feeling – I’d feel like giving up, too.

Next, we pay a quick visit to my wife’s mother in Worstead, stopping off at Wayford Bridge on the way to check on the boat and pick up a container of linseed oil so that we can oil the kitchen worktops, which are starting to look very dried out.

W e return home to Southrepps (briefly) to pick the dog up, and then head off to Hevingham to have dinner with my wife’s youngest son and his fiancee.

I’m feeling a little better today – not so much tremor, and what there is is mainly confined to my left leg.  Dystonia is better, but my dyskinesia keeps trying to catch me out as I drink my morning cuppa.  My voice seems a little stronger, too – probably because I’ve given it a rest since the trauma of filming my vlog yesterday.  I even have enough energy to consider washing both of our cars.  In fact, I don’t just consider it: I put my wellies on, get the hosepipe out, fill a bucket with warm soapy water and proceed to actually do it!

The cars in our household have been seriously neglected, and my wife’s car (in particular, because it gets driven every day) is a lovely shade of mud.  It’s no mean feat to wash a car outside our house – we live on a narrow rural road, and I am constantly having to stop work to let traffic get past.  I’m determined to succeed, though, and eventually the cars emerge from the mud and look respectable once more.  I’ll probably pay for all of the exertion later in the day, or tomorrow.

My wife’s parents and brother are coming to dinner this evening, so we take a drive out to Lidl in Cromer to get some beers, and flowers for tomorrow (it’s Mothering Sunday tomorrow).

My wife cooks a superb dinner of salmon with roasted veggies, and we follow it up with rather a lot of ice cream.  A good evening is had by all, and we round it off by going through a box of old photographs (from her late grandmother) and laughing and reminiscing about times long since passed.  It’s gone midnight before our visitors leave, and the clocks go forward an hour tonight, so we lose an hour’s sleep (or just stay in bed late tomorrow morning!).

My symptoms are running riot today.  Nothing in comparison to how I was before my DBS, but running riot by post-operation standards.  Tremor on both sides, dystonia in my right foot, dyskinesia in my right arm, aching muscles all over and a weak, husky voice that keeps breaking up.  It’s not a good day.

I need to finish scripting my vlog this morning, film it, edit it and publish it this afternoon.  My tremor makes the scripting difficult, but eventually it’s ready to be loaded into the teleprompter app on my iPad.  I set up the camera and tripod in the lounge and then I’m ready to shoot!

I’m almost embarrassed to say how long it took me to film the 4 minutes of video. It should have taken (by recent standards) about 30 or 40 minutes – let’s just say it took over 2 hours, shall we?   My voice is constantly letting me down, running out of steam mid-way through sentences, strangling  my words – it’s so frustrating!

Amidst the frustration of filming, I am also receiving emails from Vice.com about the filming of the documentary about cannabis and Parkinson’s.  They are having problems getting the use of a studio, so the schedule flickers between Monday 27th March and Tuesday 28th March so many times that I lose count.  By the time I’ve loaded the footage onto my MacBook and started editing, the filming of the documentary has been re-scheduled for Saturday 1st April!

My wife arrives home from work just as I am starting to edit my vlog.  We have something quick and easy for dinner, and then my wife goes to North Walsham to get some groceries (her parents and brother are coming to dinner tomorrow evening) while I finish editing my vlog, load it to my YouTube channel and publish it to the world.

I self-medicate with a little cannabis.  My tremor seems a little more under control now, thank goodness.  Dystonia is also more bearable.  Muscles still ache and my voice is still pants, though.

I have two tasks on my list today (other than the usual walk the dog/get the logs in/vacuum downstairs):

• Finish my CBD oil review video and get it published at last!
• Research CBD and make a start on the script for my weekly vlog

I start the day by replying to some email whilst drinking the usual 2 cups of tea and Nutriblast.   There is more information from Vice.com regarding the documentary about cannabis and Parkinson’s Disease – the shoot is now definitely scheduled for Monday, and they want to know if we are available to fly out to Amsterdam on Sunday.  I confirm our availability, and Vice.com say they will get back to me with flight timings and hotel details, etc.

Then I get cracking with finishing the edit of the review video, add subtitles and a watermark, upload it to my YouTube channel and publish it to the world.   That sounds like it all happened in the blink of an eye, doesn’t it?  If only!  It’s approaching 2.30pm by the time I finish, and then I decide to do the routine stuff before researching CBD – the dog is nagging me to take her to play ball, so I do that first, swiftly followed by getting the logs in and vacuuming.

I make a start on the research, and make a few notes for the script, and then my wife arrives home from work.

Dinner.  A beer.  Netflix.  Cannabis.  Bed.

I feel that I’ve had a disturbed night of sleep, but when I check my Fitbit it seems I was only awake for a couple of minutes around 12.30am and a couple of minutes around 4.30am, so not bad at all!

I have an email from Vice.com this morning, just confirming their intention to fly my wife and I to Amsterdam next Monday (27th March) to film a documentary about cannabis and Parkinson’s Disease.  I was beginning to think it was just “pie in the sky” because I hadn’t heard anything more from them since their phone call last Wednesday, but today they are talking about travel arrangements, passports, taxis etc., so now it looks like it really is going to happen.

When my wife has left for work, I pick up the pieces of the Olimax 7% CBD Oil review that I am working on.   I have a little bit more scripting to do, a couple of pieces to camera to film, and quite a lot of editing.  I walk the dog and then crack on with the scripting – to be fair, it only takes me about 15 minutes, and I manage to fit it around my daily PopMaster ritual.

I set up the camera and tripod, and load the script into the teleprompter app on my iPad.  I’m not too bad in front of the camera today and manage to get the shots that I require in only 3 or 4 takes.  I load the footage onto my MacBook and get on with editing it.  I have a fair bit of tremor on both sides today, so I decide to try another dose of the CBD oil that I prepared on Monday.  I took about three-quarters of the dose that I took yesterday, and that did the trick just fine – it does slow my editing down a bit, mind you, and by the time my wife arrives home from work I still haven’t finished it.  Tomorrow it will have to be completed, and then I really have to research and script my weekly vlog, otherwise Friday will be manic!

 

I finally got around to putting our bathroom plumbing job out to tender on the internet last night, and there are a couple of responses in my email this morning, so I send them each an email so that we can make appointments for them to come and look at the job prior to quoting a price.  I’m really glad to get that item crossed off my list!

My wife makes me a cuppa and a Nutriblast before going to work, and I walk the dog and listen to PopMaster before getting on with my planned task for the day.  I am continuing with the video review of Olimax 7% CBD oil that I started yesterday.  I need to take some of the oil and see what the effects (if any) are.  Then I need to script the effects and conclusion, and film it.

I take 1ml of the oil, which may have been a little too much, but given my failure to feel any benefit at all from the Olimax 4% CBD oil that I reviewed, I felt justified.   While I’m waiting for it to take effect (hopefully), I load the footage that I shot yesterday onto my MacBook, and start editing it.  I really thought that I would finish this video and get it published today, but I reckoned without the effects of the oil!  After less than 30 minutes I can feel the effects taking hold, and I’m feeling relaxed (and tremor free).  Far too relaxed – in fact, I have a very relaxed afternoon!  My left leg tremor and right foot dystonia, which were evident this morning, are now much improved.  I think I could probably have obtained the desired effect with half to three-quarters of the dose that I took.   I script the effects and conclusion for the video, but don’t feel like I would do a very good job of filming it at the moment, so I take the dog for another stumble/walk and then vacuum downstairs.  I’ll try a smaller dose tomorrow and film the rest of the review then.  I also want to decide on the subject of my vlog this week, and make a start on researching and scripting it, so hopefully I can do some work towards that tomorrow.

I’m going to be filming this week.  I jotted down the videos that I need to make, and there are 8 of them, so I’d better get cracking.  The first one is a review video for the Olimax 7% CBD oil that the Polish Medical Marijuana website sent to me absolutely ages ago.  I check the manufacturer’s website for a lab report on this product, and see that most of the 7% of CBD is, in fact, CBDA which is not really what we are looking for.  The CBDA can be converted to CBD by decarboxylating it, so the first thing I need to film is the cooking of the oil.

Before I start the decarboxylation, I need to prepare a script (which should suggest the shots that I need to get), so I sit down on the sofa with my iPad and write the first part of the script.

My tremor seems a little better today, and my dystonia and dyskinesia are similarly improved, which is great.   My voice is still weak, my balance seems reasonably okay.  My walking is not so good, though, so I take the dog for a stumble (rather than walk) around the village hall field this morning.

Next on the agenda is setting up the camera, tripod and radio mic, loading the script into the teleprompter app on my iPad and turning the kitchen into a studio.  I then film the process of decarboxylating the CDB oil, and film myself introducing the review (as scripted!).

I return the house to relative normality and then take the dog for her second stumble of the day (in-between heavy rain showers) by the time my wife returns from work.  I had also intended to put the plumbing job (replacing our old cast iron bath) out to tender on the internet, but still haven’t done it – perhaps I’ll manage to do so after dinner this evening…

My wife has had a bad night.  She thinks that she may have made a mistake on some curtains she is in the middle of making, so she has been awake half the night worrying about it.  When she’s stressed, I’m stressed, and when I’m stressed then my tremor goes through the roof.  So that’s what happens.

When we have both calmed down a little, we go out to Cromer to do some grocery shopping (and get some fresh air).  Then we go to my wife’s workshop in Hevingham, because she wants to do some work on a template for a loose cover that she’s making, and also pick up some logs from her youngest son’s garden (a large tree was recently pruned) and take them over to Southrepps to be split and stored for the woodburner next Winter.

Tremor is calming down a bit by now, but it’s still being a bit of a nuisance in my left leg, and I am getting occasional restless legs.  When we get back home I take the dog for a spot of ball chasing, while my wife goes to the allotment to do a bit of digging.

After dinner I decode to self-medicate (cannabis) and crack open a beer, which does help me to relax (and helps with tremor control).

Today I’m still very tired, and tremor is a problem on both sides (but mainly in my left leg).  Dystonia is giving me some discomfort (in my right foot), too.  I also notice increased dyskinesia in my right arm and, as the day progresses, restless legs (which is most uncomfortable).

I don’t do a great deal today – a 10 minute dog walk this morning (my wife does the afternoon duty), and a short excursion to Felmingham where there is a fabric sale that my wife wants to visit.  Other than that, I spend the majority of my time acquiring the audio from the LBC Breakfast Show interview that I did on Thursday, and editing out the 5 minute segment so that I can post it on Soundcloud.  I also manage to extract the 4 minutes or so, that featured me, from the Radio 4 Today programme, and I post that on Soundcloud, too.   I then spend time posting links to my interviews on various Facebook groups, Instagram and Twitter.

My wife gives the entire house the once over with vacuum cleaner, duster and polish while I sit quietly in the eye of the storm.

My voice is giving out as evening approaches, and tremor in my legs is driving me mad, so I self-medicate (cannabis and a beer) while we watch a movie on Netflix.

Today I am suffering the consequences of an early start and a long day yesterday.  We had a reasonably early night, and my sleep (cannabis assisted) was fairly disturbance free, but today I am feeling completely wiped out – my tremor is breaking through quite strongly on both sides, the dystonia in my right foot is pretty uncomfortable and my voice (which got extremely weak towards the end of the day yesterday) is soft and hoarse.

Still, I have a vlog to script, film, edit and publish!  I have decided to vlog about the ongoing campaign to legalise medicinal cannabis, since much of this week has revolved around it.

My wife goes off to work, and I take the dog for an early walk, hoping that she will then settle down quietly and leave me to get on with stuff.   The dog does settle down.  I work on the script for an hour or two, and load it into the teleprompter app on my iPad.  Then the fun begins!  I try (and try) to film myself, but I am totally useless in front of the camera today.   My voice keeps letting me down – strangling my sentences, and breaking up.  I should be getting pretty good at vlogging by now, but if I had 1 take, I had 20 (at least).  I pick the least bad footage, load it onto my MacBook and get cracking with the editing.

Tremor in my arms is a bit of a hindrance, but I edit the vlog fairly quickly (all things considered), get it uploaded to my YouTube Channel and publish it.

My wife and I are going to dinner tonight at her eldest son’s house, so we head off over to Hevingham for the evening as soon as my wife returns from work – it’s St Patrick’s day, so I expect I’ll crack open a Guinness (or two).

My alarm goes off at 6am this morning, and I get up and get dressed without delay.  The BBC are sending a taxi to collect me (and my wife) to take us to their studio in Norwich, so that I can be interviewed for the Radio 4 Today programme.  The taxi is due at 7am, and the dog has to be fed and walked, and my wife and I need to have at least one cup of tea/coffee and some breakfast (Nutriblast) before we leave the house.

The taxi is outside a few minutes before 7am, and we are soon on our way into Norwich.  It takes just under an hour to get to the studio (which is about the size of an understairs cupboard), and we arrive to find out that I have been bumped into a later slot because of Philip Hammond‘s “handbrake turn” on National Insurance increases in the budget – not good for the nerves (or my tremor), which I am desperately trying to keep in check.  I was originally scheduled to be on air at 8.20am, but it’s just gone 8.40am when John Humphrys introduces me.  It’s all over in a flash, and I hardly get to say a word (and, believe me, I had plenty of words that I wanted to say!), but the consensus of opinion (my wife and the taxi driver) was that I had given a good account of myself (it’s at 2:42:30 if you want to listen to it).  Two minutes after coming off air, my phone is ringing – it’s the LBC Breakfast show next.  I’m quickly introduced by Nick Ferrari, and the interview begins – this time I get to say a little bit more (not a lot!) and both my wife and I felt that that was the better interview.

Back into the taxi, and we are driven back to Southrepps.  It already feels like it has been a long day, but it’s only just 10am when we get back home.  My wife disappears off to work, and I sit and deal with some email.  I have a congratulatory message from the media company that put me forward for the interviews, and some kind messages on Facebook.   The media company also call me on the phone to tell me how pleased they are with the interviews, and to let me know that Baroness Meacher will also be calling to express her gratitude.  A little while later Baroness Meacher does call, and she thanks me for “being so brave and sticking your head over the parapet”.  She also gives me her mobile number with instructions to call her immediately if the police start to take an interest in me (the subject matter of the interviews was my illegal use of cannabis to control my Parkinson’s Disease symptoms).  I am quite prepared to face the consequences of my actions (if necessary) but it is hugely reassuring to know that there is someone with some clout who is prepared to fight your corner if things go pear-shaped.

My tremor seems a little calmer this afternoon, which is hardly surprising, but my voice is incredibly weak.  I think that I may have used it up this morning, in my effort to speak clearly and loudly!

It’s been quite an exciting day, and nerve-wracking at the same time.   Every time I try to work through my list of tasks, the phone keeps ringing!

The first call I received was from Vice.com, who wanted to know if I would be interested in taking art in a documentary that they are filming about cannabis and Parkinson’s Disease.  It will involve flying to their studio in Amsterdam, and showing how cannabis affects my Parkinson’s symptoms during a day of filming.  They probably want to meet me in London beforehand, too.  Of course, I said “Yes!” – I’m keen to promote awareness of Parkinson’s, and awareness of medicinal cannabis, too.

I receive an email from the media office that Baroness Meacher referred me to, saying that there is to be a press release tomorrow about medicinal cannabis, and that they were hoping to get me an interview offer to discuss my use of cannabis to treat my tremor.  Good news!

The phone rings again, and it’s the Today programme from BBC Radio 4, wanting to know if I would be interested in being interviewed tomorrow about cannabis.  Is the Pope Catholic?  We have a long chat about my Parkinson’s Disease, DBS and cannabis.  The lady from the BBC seems very keen to use me, and says she will call me back to discuss the location of the interview and transport arrangements.

I have hardly had time to sit down, when the phone rings again.  This time it’s the World Tonight programme from BBC Radio 4 – very keen to interview me, but only if the Today programme decide not to use me.   She sends me an email so that I can contact her directly once I know whether or not the Today interview is going ahead.  Blimey!  My head’s spinning!

Next on the media hotline is a young lady from LBC wanting to interview me over the telephone at 8.20 tomorrow morning for their breakfast show.  Naturally I agree to the interview, with the proviso that it doesn’t clash with the Today interview (in the event that that does go ahead).  She is calling back later this evening to confirm details.

I somehow manage to slot in 2 dog walks around all of this activity.  Even the dog manages to get in on the media circus – I have received an email from a company in America called Thundershirt, wanting permission to use a portion of one of my dog videos for use in promoting a new product.  I don’t see why not, but I have printed off the release form that they emailed to me so that I can show it to my wife and get her approval – it is really her dog, after all!

When I attended the NHNN to have my device re-programmed last Friday, I explained that my problems were left sided tremor, and a lack of motivation.  Whilst the DBS programmer was adjusting out my tremor, I experienced a “lifting” sensation.   It was like having a sack of potatoes taken from my head and shoulders, and was such a strong sensation that it was almost a physical “lifting”.  I thought that that could have signalled an end to my lack of motivation but, if today is any indication, then I fear that is not the case.  Tremor is a little better today, since I increased the left hand side voltage on my device, so things appear to be settling down.  My voice is getting very soft and weak again, though, and my balance and walking have deteriorated as well.  It takes me so long to recover from a long day like last Friday, though, so it’s currently not possible to say whether the changes in my symptoms are down to the device re-programming or just because I’m exhausted.

I get out of bed with good intentions of working my way through a list of tasks that I have written down, but it’s now approaching the end of the day and I have only crossed one item off (and that was just an email that I needed to send).  I have done the “usual” tasks (2 dog walks, split some logs, filled the log basket and vacuumed downstairs) so I have done something, just nowhere near what I wanted to achieve.

I really need to get the bathroom finished, so I was supposed to have put that job out to tender on the internet, and still haven’t managed to do it.  You’d think it was simple enough.  A simple task.  An easy win!  I don’t understand why it’s so difficult, either.  But it is.

My wife calls to say she’s on her way home, so I stick a couple of ready meals in the oven – that was an easy win!

I’m still feeling knackered (and I slept pretty well last night) so I’m planning on an early bath and early to bed.

I had another solid night’s sleep, thanks to cannabis, and woke just before my alarm went off at 7am.  Tremor is giving my left leg a good shake, so I quickly change my neurostimulator to Group “A” settings.  There is an immediate reduction in tremor, so that’s a relief.  Hopefully it will remain under control.

My wife leaves for work and I start looking at some holiday video that one of my neighbours has asked me to edit for him.  I’m interrupted by the phone – it’s the media office that Baroness Meacher referred me to, just giving me a “heads up” about a possible interview with Channel 4 News this week.  It seems that Channel 4 News have a special interest in cannabis – one of their newsreaders (Jon Snow) participated in a programme about it a couple of years ago…  I’m advised to keep my diary clear this Wednesday and Thursday, just in case.

The phone rings again 10 minutes later.  This time it’s the media and PR Team at Parkinson’s UK – I volunteered to share my experiences with Parkinson’s with the media as part of Parkinson’s Awareness Week.  So we chat for half an hour about me, my attitude towards Parkinson’s medication, my DBS operation, and cannabis.  I have probably ruled myself out of any media contact through Parkinson’s UK, because they censored one of my forum posts in the past when I mentioned cannabis and the positive effect it has upon my symptoms – they must have somebody on the board who has interests in one of the big drug companies (but I’m willing to be proven wrong, so I shall wait and see).

I take the dog for her afternoon walk, and try to get back into editing my neighbour’s holiday video, but my heart’s not in it today.  I’m still feeling incredibly tired, in spite of the long nights of unbroken sleep I have been getting lately.  I find myself fighting off sleep at 4pm, so I guess another early night is on the cards…

I wake with loads of tremor in my left leg.  It seems worse than before I had my device reprogrammed on Friday, but my Group “B” settings (which I switch my device to at bedtime, because Group “A” settings give me dyskinesia and restless legs during the night) haven’t been changed.  I switch my neurostimulator over to Group “A” settings and get up and get dressed.  Downstairs having my morning cuppa, and my  tremor is still driving me mad.  I throw caution to the wind and start making adjustments.  I would  usually just increase the voltage by one step (0.05v) and then let it settle for 24 hours, but the severity of my tremor is such that I know such a small adjustment isn’t going to cut it – so I whack it up by 4 increments.  I’m now receiving 2.4v on the left side (was 2.2v) and 2.3v on the right (no adjustment made).  I feel a slight tingle when I increase the voltage, and my tremor does calm down a little (but only a little).  I’ll leave it alone now (until tomorrow, anyway) to see how it goes.

My wife takes the dog for a good long walk while I drink my Nutriblast and check my email and various social media accounts.  I send my daughter a text to see how she’s getting on with the half marathon that she’s running in aid of Alzheimer’s disease this morning, and get one back soon afterwards saying that she has finished in a time of 2 hours and 15 minutes, so she’s really pleased with herself – especially since she (and her team-mates) exceeded their target of £2,000 raised.

This afternoon we drive out to Cromer via the garden centre in Overstrand (to buy a sack of dog food) and make a swift visit to Lidl (to get some more fruit and veggies).  On return to Southrepps my wife disappears off to our allotment to check on the broad (fava) bean and radish plants that we (she) planted out last week, and to plant out some onion sets and garlic, while I take the dog for a sniff around the village hall field.  I do put in an appearance at the allotment as well, and attempt to weed the overgrown strawberry bed (with limited success – but any progress is better than no progress).

After dinner I decide to self-medicate (cannabis) to help me to relax, because tremor on my left side is still bugging me – job done!

We didn’t get back home from London until almost midnight last night, and by the time we had had baths and got to bed it was closer to 1am, so we feel no guilt at lying in bed until just after 9am this morning.  We need to get over to my wife’s workshop in Hevingham today to perform a roofing repair – storm Doris stripped some roofing felt off, and we really need to get it replaced before any more wet weather comes along.  We also need to collect the dog – the house doesn’t seem like home without her.

So, we gather up a few tools, load the car and head off to Hevingham.

My device re-programming doesn’t seem too effective at the moment, and I’m getting quite a lot of tremor breaking through on my left side (mainly in my leg).  It was breaking through yesterday afternoon as well, but I put that down to being tired – we walked a long way from the railway station to the Chainstore Gym and Parkour Academy on Trinity Buoy Wharf, where Karl Sterling was holding his Parkinson’s Regeneration Training workshop.  Perhaps it’s still a problem today because I am exhausted from having such a long day yesterday.  I’m tempted to have a fiddle with my device settings, but decide to leave well alone – at least until tomorrow.  I’ll self-medicate with some cannabis this evening, and that should enable me to relax a little.

We manage to patch up the roof (my wife does the majority of the work) following an excursion to B&Q in Norwich to buy another roll of roofing felt – we unrolled the roll that we already had, to find out that there was a hole in it!

The dog is pleased to see us and is very keen to get in the car and get back home.  When we get back to Southrepps my wife goes for a run while I split some logs and fill the log basket for a fire tonight – it’s not really cold enough to justify it, but we both like to see the flames so we’ll have a fire in any case.

I’m awake before the alarm goes off, and leap (well, almost) out of bed as soon as it does.  My wife is slightly more leisurely, but puts in an appearance downstairs before the kettle comes to the boil.  One swift cup of coffee later and she is out of the front door with the dog in tow, en-route to Hevingham – her youngest son is looking after the dog today, while we travel to London (and back) for a device reprogramming session at the NHNN.

I grab a few bits and pieces to take with me while my wife is out, including a clean t-shirt and a pair of shorts – we are going to meet Karl Sterling after my hospital appointment, to participate in his Parkinson’s Regeneration Training workshop, so I thought I’d better be prepared!

We get to Gunton station with a couple of minutes to spare, and board the train to Norwich for our connection to London.   Everything is running smoothly today, and were arrive at London Liverpool Street station bang on time.  A quick journey on the underground and we are at the hospital with time to spare.

My tremor its still bothering me (left side only) so that’s really the only issue at the moment (aside from my ongoing motivation problem – it remains to be seen if they can do anything for me on that score).  My other gripes (weak voice, poor balance, wonky walking) I’m happy to put up with as a trade-off for tremor control.

Joseph reprogrammed my left side only, calming my tremor considerably and telling me to come back later if it was causing me any concern.  We then set off on the tube to join Karl Sterling at his Parkinson’s Regeneration Training workshop.  45 minutes later we roll up at the venue, hot and sweaty after having walked rather a long way from the station.  The workshop is extremely interesting and my wife and I gather some valuable insight.

At 5pm Karl, my wife and I depart for the Blues Bar, collecting my daughter (who is also in London this evening) along the way.  2 hours (and 3 pints) later, my wife and I leave to catch our train back to Norfolk.

I’m completely exhausted and can’t wait to get home and crawl into bed

I am going to film my weekly vlog today – I’m going to be spending much of tomorrow travelling to London and back for my appointment at the NHNN.  I’m also going to fit in a visit to the Blues Bar and meet up with my daughter for a quick drink!

I have pretty much finished my script for the video, but my wife came up with a couple of good points that I should make, so I make some amendments to it whilst drinking my tea and Nutriblast.

My wife leaves for work, and I set up the camera and tripod in the lounge, load the script into the teleprompter app on my iPad and rehearse the script a couple of times.

Left leg tremor is very persistent, and I’m glad to be going for a tune-up tomorrow.  My right side is pretty much under control, so I don’t think any adjustment is required there.  My voice is a little on the weak side today, so I concentrate on my breathing, and enunciate slowly and clearly – it’s so easy to just let it slide, and then I end up sounding like some old drunkard!  That would be dreadful, especially since this week’s vlog is all about communication problems in Parkinson’s Disease.

I film the vlog – I’m not too bad in front of the camera this week, but still have 4 or 5 takes before I’m happy with what I have shot – load the video onto my Macbook and edit it in double-quick time.  Sub-titles and watermark follow, and then I load it to my YouTube channel ready for publication tomorrow.

My wife and I eat pizza for dinner, and then find a film on Netflix to watch.

Today I’m going to be performing some research for a script for this week’s vlog.  The subject matter (requested by a YouTube user) is communication difficulties in people with Parkinson’s – which I do know something about, being a person with Parkinson’s who has some voice issues and also some cognitive decline with regard to word fluency, but I want to be sure that I cover the subject adequately and accurately.

First things first – 2 cups of tea, a Nutriblast, a dog walk and then PopMaster!  The dog doesn’t settle down and let me get on with things until she has been for her morning walk – and then she usually starts pestering me to take her out again around 3pm, so I have a 5 hour window!

I write about 5 minutes worth of script, and then email a copy to the YouTube user that requested the subject – I want her to check that I have covered the subject to her satisfaction.  I hope it’s okay – I want to film it tomorrow morning and edit it tomorrow afternoon, because I’m going to the NHNN for a tune-up on Friday.  I’m also going to be going along to meet Karl Sterling at the Parkinson’s Regeneration Training workshop that he is running in London, and then going to the Blues Bar for a beer (or two) before catching the train back to Norfolk.

My tremor is still quite strong in my left leg, but the dystonia in my right foot has reduced significantly today, so things are much more comfortable.  Everything else seems pretty good (or at least no worse than usual!).

I’m up just before 7.30am, and make the morning tea and coffee before my wife arrives in the kitchen to prepare the Nutriblasts.  She comes up with a revision for the script of my “DBS on/DBS off” video, and I set about revising the script (since it is a good revision!) for filming today.

My wife departs for work, I walk the dog, finish my 2nd cup of tea, drink my Nutriblast and listen to PopMaster.  The dog settles down on the sofa for a snooze, and I set up the camera and tripod, load the script into the teleprompter app on my iPad and set about rehearsing prior to actually filming myself and remaking my video.

I film myself (not too many re-takes!), load the video onto my MacBook, and edit it – only taking half an hour out to give the dog her afternoon walk, and grab a few logs from the back garden so that we can have a fire this evening.  I am adding the final touches (sub-titles and watermark) as my wife returns home from work.  This time my work gets full approval, so I upload the video to my YouTube channel and publish it.

I’m feeling exhausted from having my DBS switched off today – I had forgotten how tiring it is to have constant tremor and dystonia.  This evening the tremor in my left side is persisting, and I have a lot of dystonia in my right foot – possibly as a consequence of having my DBS switched off this afternoon?  Who knows!  I just hope that things revert to relative normality tomorrow.

I light the fire while my wife prepares dinner, and then we settle down on the sofa and watch a little something on Netflix.

I’m going to finish my “DBS on/DBS off” video today – I’m determined!  It seems to have been in progress for months and months now, and I want to get it edited and published.  I’m feeling sightly pressured this week, probably because I am going to the NHNN in London this Friday, which is the day that I usually film, edit and publish my weekly vlog, so I need to prepare a script and film it a day or two early.

I take the dog for a walk, listen to PopMaster and then I review the editing that I have already done.  I’m missing a couple of shots, so I set up the camera and tripod in the dining room, turn my DBS off, and film them.  I spend the entire afternoon editing just s few minutes of video, and am just about finished by the time my wife arrives home from work.  I can’t say that I’m very pleased with the result, but then I am my fiercest critic.  I ask my wife to review it before I upload it to my YouTube channel – if she says that it’s okay, then it’s okay!   My wife likes the script, but says that it’s not as good as my other videos – kinda confirms what I thought, so I am going to film it again tomorrow.  Not really looking forward to spending half a day with my DBS turned off, but it has to be done…

Dinner, a beer (Hobgoblin) and an early night!

It looks to be a bright Spring-like day when we get up just after 8.30am, but by 10am it has clouded over and is spitting with rain.  A quick check of the weather forecast shows that there is to be no progress on re-felting the roof of my wife’s workshop today – it is scheduled to rain all day.  I really didn’t want any more  water to get into the unprotected roof, especially since I stripped it all back yesterday, so I’m fretting about it (a bit).

My wife and I take trays of broad bean and radish seedlings up to our allotment, and get them planted out.  The broad bean seedlings, in particular, seem to have grown overnight from being a couple of inches high to being 6 inches high – they’re looking extremely healthy, but are fast becoming root-bound in their little seedling pots.  We cover the bean plants over with plastic poly-tunnels, and then I leave my wife to plant out the radishes while I return home to split some logs for the fire, and to give downstairs a quick going-over with the vacuum cleaner.

Left leg tremor is bothering me (again), although it is well under control in my left arm and on my right hand side – I’m going to try some of the Charlotte’s Web Everyday Plus CBD oil that the Polish medicinal marijuana website sent to me, and see if that will calm it down.  I know that a little cannabis will do the trick, but I don’t really want to have the “high” that accompanies it, at least not during the day.  Dystonia and dyskinesia are also under control and my voice seems to be okay, but my walking is total pants and my balance is a little wonky.

My wife disappears off to Hevingham again, to finish off clearing tree trimmings from her youngest son’s back garden, leaving me in charge of lighting the fire and walking the dog (and tweeting from the @parkinsons52 Twitter account – my last day in the hot seat!).  I also start doing some research for next week’s vlog, which is going to be about communication difficulties faced by people with Parkinson’s.  I take some of the Charlotte’s Web CBD oil, and within the hour my left leg tremor has moderated.

We have a busy day ahead of us.  My wife wants to go over to Hevingham to work  in her youngest son’s garden (he has had a tree pruned, and all of the trimmings are lying in the garden).  We also have to repair the roof of her workshop (storm Doris has ripped some roofing felt off).  We also need to deliver a small pine chest of drawers to her eldest son (his fiancee is going to transform it into “shabby chic”).

This evening we are going to a friend’s 60th birthday party (that’s assuming we have any energy left!).

I help my wife to put the pine chest of drawers in the back of her car, take the dog for a quick walk and then we are off to Hevingham (armed with a roll of roofing felt).

My wife, her youngest son and I put a huge amount of tree trimmings through a petrol wood chipper and produce a prodigious quantity of wood chips – to be fair, my wife and her youngest son do the majority of the work.   I spend some time removing the old roofing nails from where the felt has been torn off my wife’s workshop roof, and generally preparing it for repair – we run out of time to complete this, so it looks like we’ll be back in Hevingham tomorrow.  We deliver the chest of drawers to my wife’s eldest son, and then head back to Southrepps to get ready for the party this evening.

My tremor is bothering me, so I self-medicate (cannabis) before we go out, and that calms it right down.  We don’t make a late night of it – I am feeling pretty knackered – and we are home before 11pm.

Today I have volunteered to collect my elderly neighbour from his care home and bring him back to Southrepps so that he can collect some more clothes and personal bits and pieces from his house.  It is also the day that I publish my weekly vlog, so it is going to be a bit of a challenge to do that as well!

As soon as my wife has left for work, I resume the script writing that I started yesterday.  I seem to have a copious number of words, and I’m worried that my vlog will end up being too long, so I have a test read through of the whole script with a stopwatch running.  I manage to time myself at just under 5 minutes, so that’s okay.

I punctuate the morning with a dog walk, and then set up the camera and tripod.   I load the script into the teleprompter app on my iPad, and then start filming.  I have 30 minutes to get it right, so (after a couple of false starts) manage to get the footage that I require in just 2 takes.

I dash out to the care home, pick up my neighbour and return to Southrepps.  I assist him in getting his clothing together, and then load it into the car while he is getting some of his personal possessions together.  Then I ferry him back to the care home and carry the bags of his belongings to his room.  Good deed for the day, done!

On return to Southrepps, I load the video onto my MacBook and get cracking on the editing, which is almost done by the time my wife returns from work.  I load it up to my YouTube channel, publish my weekly vlog and can then relax for the evening.

Symptom-wise, I’m pretty good today – the only thing bothering me at the moment is some tremor breaking through on my left side.  Dystonia is there, but under control.  My balance and walking are not great, but I’m managing.  Muscular stiffness and weakness – I have some rigidity, but it’s not too debilitating.  Mood and motivation have improved since last week, and I feel cautiously optimistic.  I keep thinking about increasing the voltage on my left side, but I’m worried about provoking the dyskinesia in my neck (which is generally under control).  I have a device programming session at the NHNN next Friday, so I will discuss it with the DBS team and see what they have to say…

Up at 7.30am following another good night’s sleep.

Tea, Nutriblast, Dog walk and PopMaster set me up for the day.

I’m busily tweeting away from the @parkinsons52 Twitter account this morning, when the phone rings.  I am half expecting someone from Baroness Meacher‘s office to call me, following a discussion that I had with the director of Patient Zero Productions the other day, but I’m not really expecting to be called by Baroness Meacher herself!  She was completely charming, and we chatted away for several minutes, discussing my use of cannabis, and how ridiculous that it should be unavailable for medicinal purposes.  She ended by asking if I would be prepared to talk to the media about my illness and how I use cannabis to treat my symptoms – of course, I said “yes”!   She said that someone from her office would be in touch regarding this.  It would be really something if I could help in getting the message out there!  Watch this space.

I consider filming some more for my “DBS on/DBS off” video today, but decide to work on my script for this week’s vlog instead – I don’t want to be doing it in a rush tomorrow morning.   It’s more of a personal vlog this week – someone asked me to talk about my life history prior to my diagnosis with Parkinson’s Disease, so that’s what I’m doing… My script flows, and flows, and flows – I am seriously going to have to trim it down before filming, because I don’t want to make my vlog more than 5 or 6 minutes long.  I think that (generally) people can spare 5 or 6 minutes, but anything longer doesn’t hold their attention (that’s just my opinion!).

I take the dog’s brush with us when we go over to the village hall field this afternoon – she’s shedding her coat at the moment, so I’m going to groom her while we are out.  I manage to remove about a kilo of fur (okay, so I’m exaggerating, but it was loads of fur!) and that’s a kilo of fur that I won’t have to vacuum up from the rug in the lounge!

I make arrangements to collect my elderly neighbour from his care home in Cromer tomorrow and bring him back to Southrepps so that he can collect some of his belongings from home.  My wife and I then visit the Lidl supermarket in Cromer to do our weekly grocery shop.

Then home.  Then bed!

I’ve got quite a lot of tremor breaking through on my left side this morning, so I’m thinking of filming the extra shots that I require for my “DBS on/DBS off” video.  Unfortunately, thinking about it is as far as I get today – I’m having a bit of an “off” day, motivation-wise, possibly to do with the fatigue I’m experiencing at the moment following our weekend trip “up North”.

I tweet a couple of times from the @parkinsons52 Twitter account, and check my email, Facebook, Instagram and Twitter accounts.

I had a call from the director of Patient Zero Productions (who interviewed me a couple of weeks back for their documentary, The God Plant) – they recently interviewed Baroness Meacher in the House Of Lords; somehow they got around to discussing my involvement in the project and she asked for my contact details.  I wonder why?  No doubt it will become clear in due course.

I feel the need to make myself do something (anything) useful.  When my next door neighbour was taken into hospital (several weeks ago), we had to break a pane of glass in his back door to gain access for the ambulance crew.  We taped some polythene over the hole, but the house really needs to be made secure again, so I drive to a glazier in North Walsham and purchase a piece of glass to fit the frame.  Since I’m nearby, I also pay a visit to Lidl and get a couple of packets of ginger nuts.  I fit the glass when I get back to Southrepps, and then sort my neighbour’s wheelie bins out so that his rubbish and recycling get collected when the lorry comes around next.

What else do I achieve today?  Not a lot!  Dog walk (x 2).  Brought a basket of logs in and lit the fire.  Vacuumed downstairs.  That’s all, folks!

Being away from home, even for just one night, makes me appreciate the comfortable bed that we have at home.  I slept well.

We get up at 7.30am.  My wife is out of the door on her way to work by 8.30am, and I settle down on the sofa with my iPad to respond to a number of emails that are awaiting my attention.  I also have a think about what I’m going to tweet about today – I am tweeting (on Twitter) from the @parkinsons52 account all this week and feel the need to provoke some discussion, so I decide to tweet about DBS and prescription medication (or, rather, non-prescription medication – cannabis).

My elderly next door neighbour has now gone into a care home, and has sent a message requesting some more clothing be collected from his house and delivered to the care home.  I go next door, sort out his (mostly junk) mail, and pile clean clothing on his bed, ready to be bagged up and taken to him.

I walk the dog, split some logs and fill the log basket, light the fire, vacuum downstairs, and that’s about all I can manage today.  I’m feeling tired from the last couple of days, and my legs and arms are aching.  Tremor is still there in my left leg, but it’s manageable.  I’m feeling quite rigid today, probably from being sat in the car all day yesterday, and find sitting down and standing up a bit more of a challenge than usual.  I decide to lubricate myself with a beer!

Today we are travelling back home, but not before we have been tourists for just a little while longer.  We tanked up on our “all you can eat” breakfast at the hotel, and then set off for on a tour of Buxton (where my wife spent her childhood,

and then on to Bakewell (to buy some proper Bakewell pudding).  It is market day today (and the livestock market, too) so Bakewell is extremely busy, in spite of the weather, which is truly appalling – cold, and chucking it down with sleet and rain.

We buy some (extremely expensive) Bakewell puddings, and then drive to Chesterfield and drop in on my wife’s granny again, to wish her a Happy Birthday, stopping along the way to take in some of the stunning scenery.

I have aching muscles today, following all of my exertions of yesterday, so I can’t walk very far and I’m glad to get back into the car and be driven!  Wierdly, it is my shins that hurt the most!

 

Half an hour later, and we are on our way back to Norfolk, stopping just the once (at a McDonald’s near King’s Lynn) and then picking up the dog from my father-in-law on our way home.

 

We are off to Derbyshire today to visit my wife’s granny, who will be 97 tomorrow. So we are up and out of the house by 7.45am, leaving my daughter to look after the house.

We drive to Hevingham where we are relinquishing control and being driven by my wife’s youngest son and his fiancee. My wife’s eldest son, his fiancee and our granddaughter are also travelling there today. We have a good journey, only stopping for a toilet break and a McDonald’s. My wife’s granny was pleased to see us all, especially her great-great-granddaughter whom she was meeting for the first time.

My tremor is behaving thanks to a little self-medication (cannabis) in the car during the journey.

We spend a couple of hours this afternoon in Matlock, where we get ride in a cable car to The Heights of Abraham. We do an incredible (to me) amount of walking up (and down) some very steep paths and steps, which tires me out completely!

We check into our hotel in Buxton, have baths and showers and then visit a local pub for dinner and drinks.

Today is the day of the baby shower – my wife’s youngest son’s fiancee is expecting our 2nd grandchild at the beginning of May, and has hired the village hall in Hevingham for her baby shower.  My wife has done a lot of work to help out, and this morning we are all going over to the village hall to decorate the place with banners and balloons and lay out food and drink etc.

My wife leaves for Hevingham to get the keys to the hall, whilst my daughter and I head off to North Walsham to buy a gift for the baby (after taking the dog for a quick excursion).

We arrive at the village hall and get stuck in – my wife puts me in charge of balloons.  I’m good with balloons, it seems!  45 minutes later the preparation is done, and I leave my wife and daughter to join in with the baby shower while I return home to Southrepps.

While the girls are out having fun, I split some logs, fill the log basket, light the fire, and sit down to think about next week.  I am tweeting (on Twitter) from the @parkinsons52 account next week – each week (for a year) a different person tweets from this account, giving a different Parkinson’s perspective.  I have been asked to do the tweeting for next week (starting on Monday), and I need to have a bit of a think about what exactly I’m going to tweet about!

I reluctantly leave the fire blazing away in our cosy little house to take the dog for another walk.  It’s a pretty miserable day here in Norfolk – blowing a gale (again) and raining quite a lot of the time.  The dog walk is briefer than usual, and even the dog can’t wait to get back by the fire.

My wife and daughter return, and my daughter and I go to Stalham to visit my mother, while my wife takes the dog over to stay with her father for a couple of days – my wife and I are travelling to Derbyshire tomorrow to visit her maternal grandmother, whose birthday it is on Monday.

I didn’t do any more editing on my “DBS on/DBS off” video today, but I did manage to script, film, edit and publish my latest vlog to my YouTube channel, so I’m really pleased about that – especially since the subject matter of the vlog is motivation, apathy and depression!

My daughter is arriving this evening (from Stevenage) – she is coming to attend my wife’s youngest son’s fiancee’s Baby Shower in Hevingham tomorrow – so I need to clear some stuff out of the spare bedroom and make the bed up for her.  I also want to get some logs in, light the fire and vacuum downstairs before she arrives.

I walk the dog (twice) in between working on my video, and do the logs, fire and vacuuming while uploading it to YouTube.  My wife arrives home as I am making up the spare bed, so at least that is a job that she doesn’t have to do.  She does make dinner, though – a superb vegetable lasagne that I know my daughter is particularly fond of.

I sit down to write my blog, and it is only then that I focus on my symptoms – mainly tremor in my left leg that makes my MacBook bounce around on my lap and makes typing a challenge.  I have some increased dystonia in my right foot as well, but it is manageable.  Time to self medicate (cannabis), I think!

Tonight my wife and I are going to a gig for the first time in a long time.  My days of standing up in crowded venues for hours at a time are well and truly over – so that would seem to rule out most gigs these days.  I rang the LCR in Norwich, and asked if they have a seated area, and they have, so we have reserved a couple of seats.

The UK is being battered by storm Doris today, and it’s blowing a gale and chucking it down with rain – not good dog-walking weather.  The dog seems to know this, and keeps her head down.  We take advantage of a brief dry spell mid-morning.

I want to get on with the editing of my video today, but am having trouble getting started (motivation!).  I sit down at my MacBook just after lunch, and review what I did yesterday.  I’m just about to continue with the editing when there’s a knock at the door – my brother arrives to see how I am, so the editing is shelved for a couple more hours.

I manage to do some more work on the video (and vacuum downstairs) before my wife arrives home from work, and then we have a mad rush to have something to eat, get changed and get ourselves to the LCR in Norwich.

The support acts are truly dreadful – when they stopped playing it was akin to removing a tight pair of pants – but Deaf Havana played a storming set, and  we both really enjoyed it.  I’m so glad we had seats – it was tiring enough being seated, I don’t think I would have made it to the end of the gig if we had been standing.

I slept really well last night – cannabis is medicine!  I am going to spend the day editing video, and I’m looking forward to it (with some trepidation) – I think there’s a lot of editing to be done in turning my captured footage into a watchable video.

I make the tea and coffee.  My wife makes the Nutriblasts.  Then she is off to work, and I wait for a break in the weather (it’s chucking it down) so that I can take the dog for her morning constitutional.  It stops raining just after 10.30am, and we make a dash for it before the heavens open again.

I go through the lengthy process of selecting the best “takes” from yesterday’s filming, and import them onto my MacBook for editing.  There are still a few shots that I am missing, and I (briefly) consider filming again today, but then decide to try to get the main body of editing completed, and get the additional shots tomorrow (they involve me turning my neurostimulator off again, and I don’t feel like doing so today!).

I take a break mid-afternoon (when the dog starts looking at me hopefully whenever I move), and take her for another walk.  At least it has stopped raining now.

I receive an email from the DBS team, agreeing to an appointment for reprogramming my neurostimulator on 10th March – fantastic!  I book train tickets for my wife and I.  I am now definitely going to pay Karl Sterling a visit at his Parkinson’s Regeneration Training workshop while we are in London (and have a sneaky beer or three in the Blues Bar afterwards!).

I haven’t made as much progress as I had hoped to make, but any progress is better than no progress at all.  At least my tremor is behaving itself today, my balance and walking are pretty good, my motivation and energy are better than they have been of late, and my dyskinesia and dystonia are both under control.  All in all, not a bad day!

I’m feeling a lot more positive today, like I’ll actually be able to achieve something!  I had a reasonable night’s sleep last night, in spite of forgetting to self-medicate with cannabis.  I got off to sleep okay, but woke at 4am, and then only dozed until the alarm went off at 7am.

My wife leaves for work, and I take the dog for her (earlier than normal) morning walk.  I intend to be back home by the time PopMaster starts, but reckoned without bumping into a chatty neighbour – my quick 15 minute dog walk turned into a 45 minute marathon.  I manage to catch the second half of PopMaster, so my day wasn’t completely ruined!

I spend the next two or three hours working on the script for my “DBS on/DBS off” video, and reviewing the shots that I filmed a week (or was it two?) ago.  Eventually I am ready to start filming, so get the camera and tripod set-up in the dining room, get the lighting sorted, set the radio microphone up, load the script into the teleprompter app on my iPad and then rehearse the script.  By the time I’m ready to shoot some video, the dog tells me it’s time for another walk – she’ll only moan and grumble at me if I don’t take her (and then I’ll curse her when I’m editing, because the microphone will have picked up her vocalising), so I take her.

It’s almost 4pm when I start filming, and I’m fast running out of time.  I’m not very good in front of the camera today, and my voice is weak and husky as well.  Many, many takes later, I call a halt for the day.  I’ll start editing tomorrow and see what shots I’m missing…

I’m feeling knackered after having my neurostimulator switched off during the filming – all the shaking is really tiring!  I clear the equipment away and restore the dining room to normality, before slobbing out on the sofa.

I had a good night of (cannabis assisted) sleep, not waking until just after 6am, and then snoozing until the alarm went off at 7am.  I resist the temptation to leap out of bed until almost 7.30am, and then get dressed and go downstairs to give the dog her breakfast and make the tea/coffee.

I’m still struggling to motivate myself, so I write myself a list of tasks to do today.   I could do with driving over to Wayford Bridge to check on the boat – the engine needs running for while to charge the batteries, and I need to pick up the linseed oil to use on the kitchen worktops at home, which are starting to look a little dried out.  I also want to make some more progress on my “DBS on/DBS off” video, so I plan to do some work on that this afternoon.

I do some more online research on baths – I want to ensure that the bath I buy to replace our cast iron monstrosity is of a decent quality, and find one that has a 10 year manufacturer warranty for little more than the one that I found the other night (which only has a 1 year warranty!).

I pay my (overdue) water bill.

I send an email to the DBS team at the NHNN, requesting an appointment for re-programming my device on 10th March, when I’m planning on being in London to attend one of Karl Sterling‘s Parkinson’s Regeneration Training workshops.

I walk the dog (twice), and that’s about it for today…  I don’t drive to check on my boat, and I don’t make any progress with my video.

I’m feeling a little stressed today (probably because I’m frustrated at my lack of motivation) and tremor in my left leg is bothering me, so I decide to take a dose of Charlotte’s Web Everyday Plus CBD oil – I have several small sample bottles that the Polish Medical Marijuana site sent me to test.  After about an hour, I’m feeling relaxed (or, at least, a little less uptight).  After two hours, I could quite easily go to sleep on the sofa – I’m fighting to keep my eyes open.  I’ll try taking some more tomorrow to see if it has the same effect – and then I’ll have to make a review video for my YouTube channel!

My wife has a long list of jobs that she wants to do today, and is feeling overwhelmed.  I’m not feeling like doing very much at all (to be perfectly honest), but feel that I should be motivating myself to help her out – so I do!

I take the dog out for a quick morning stroll while my wife is making the tea and Nutriblasts, and then get stuck into being useful.

She has a load of stuff that she needs to print out for her youngest son’s fiancee’s baby shower, which is taking place next Saturday in Hevingham.  So, I locate the colour inkjet printer, bring it downstairs and print everything that she needs to be printed.

Then I clean the woodburner, emptying the ash and cleaning the soot from the glass in the doors.  I clean the hearth and then bring in a supply of kindling from the garden shed.  I spend some time clearing up some rubbish in the back garden, then split a load of logs and fill the log basket for this evening’s fire.

The dog is asking me (very nicely) to take her out again, so I oblige and spend a happy half hour throwing a ball for her on the field by the village hall. When we get back indoors I vacuum downstairs, and then feel that I have earned a little sit down.  I’m feeling pretty knackered – I think I overdid it in the garden, filling a sack with garden rubbish that I then struggled to lift into the wheelie bin – so I need to recover a little.  I’m still getting a significant amount of tremor breaking through on both sides – but mainly on the left.  Dystonia is a little worse today, but it has been worse, so I’m merely commenting (not complaining).  Voice is still on the weak side, balance and walking still a bit pants, weak and stiff muscles are still weak and stiff.

My wife prepares our meal while I get the fire going, and then I sit down to write my blog before getting an early night.

We decide to try to progress the renovation of our cottage today, by finding a bath.  This renovation has been ongoing since I bought the cottage in 2011,  a month or two before I was diagnosed with Parkinson’s Disease.  We moved in here almost 2 years ago with just the kitchen and bathroom still in need of major work, and they are still in need of major work!  The bathroom is usable (thankfully!) but the old cast iron bath (which is chipped) has to be replaced with a more modern pressed steel bath, and then I need to get my backside into gear and finish off the tiling, so that we can use the shower.  I really miss having a shower!

So, off we go to Rackheath, where there is a bathroom showroom that has been recommended to us, and amble around the showroom until a salesman notices that we are there.  We choose a bath and taps, get some advice on smashing up our old cast iron bath, and head off back to Southrepps armed with brochures and prices.

My wife is joining her father and brother on a walk from Sheringham to Southrepps this afternoon (and evening).  Her father is a keen long distance walker and is actually walking 50 miles today (as a member of the LDWA) – my wife and her brother are merely keeping him company for 12 miles or so.  I drop my wife off in Sheringham and go home to walk the dog and check the bath and tap prices on the internet!

I have quite a bit of tremor on my left side today (mostly in my leg), so I decide to self medicate (cannabis) while I’m surfing the ‘net.  It’s amazing how effective this plant is, and I stop shaking completely for the first time today.  Voice is still husky and weak.  Balance and walking ain’t great.  I get some logs in and light a fire.

My wife, her father and her brother arrive in Southrepps some 4 hours later, and we sit down to have some dinner.  They may have walked 12 or 13 miles from Sheringham, but I have managed to save £125 on the bath and taps simply by ordering them online..

Our granddaughter is being delivered to us at 8.15am, so we are up and ready for action at 7.30am.  My wife is busy trying to sanitise the house when there’s a knock at the door and a disruptive grandchild arrives.  Disruptive because I have had to reorganise my schedule for my weekly vlog – I prepared my script and filmed myself yesterday, so all that remains to be done is the editing and publishing!

I intend to edit my vlog this morning, but let’s get real here!  With a 17 month old toddler in the house, that’s just not going to happen.  I do make a start on it, but lunchtime rolls around and I still haven’t made a significant dent in the task.

My elderly neighbour is being discharged from the Norfolk & Norwich hospital today.  He is going straight into a care home in Cromer, and another of my neighbours has asked me to go with him to Halsey House to take him a change of clothes and a few personal bits and pieces.

My tremor is through the roof today, making everything more of a challenge than it usually is.  It’s only when I am preparing to go to Halsey House that I discover that I have forgotten to change my neurostimulator to its daytime settings.  I change the settings, and things are immediately much better (not perfect, but definitely much better).

So, I leave my wife to look after our adorable (yet disruptive) granddaughter while I go to Cromer to make sure our neighbour is settled in and happy (and he is, so that’s a result!).

I walk the dog when I get back home, and then sit myself down to finish my editing.  Our granddaughter is collected before 5pm, and I manage to finish my video just after 6pm and leave it uploading to my YouTube channel while my wife and I go to Lidl in Cromer to do our weekly grocery shopping.

I’m not having a great day!  I want to get my vlog scripted, filmed and loaded onto my MacBook today.  Our granddaughter is spending the day with us tomorrow, so filming is really out of the question.  If I can get that done today, then I can spend some time tomorrow editing it, and get it uploaded to my YouTube channel by tomorrow evening.

I intended to finish the script yesterday, but didn’t get anywhere near.  I’m struggling with it this morning – not because I’m having trouble with the subject matter, but because my tremor is being a damn nuisance.  I take a break and walk the dog, hoping that that might calm my tremor, which it does (to some extent).

I finish the script around lunchtime, and then get the camera and tripod set-up in the lounge.  I load the script into the teleprompter app on my iPad, and run through it a couple of times to get my timing right.  To cut a long story short, I lose count of the number of takes.  I fluff my lines continually, and when I do get them right, then I’m frustrated by my voice!  My voice is pretty weak today, and sounds indistinct and slurred (to my ears).  I am also running out of voice and strangling the ends of my sentences, which is a real pain in the …

It takes me over 2 hours to do what should have taken about 30 minutes.  I’m not happy!

What does make me happy, though, is the arrival of a package from CBDBrothers.  They have sent me some CBD oil, CBD paste and CBD balm to try out – very generous of them!  I send them an email of thanks, and then get some logs in and light the fire before my wife arrives home from work.

My wife’s car is all better now, since its lifesaving wiper motor transplant, so I drive my wife over to Hevingham to pick it up this morning.  I return home to Southrepps and my wife goes to work.

My right sided tremor is a little better today, but my left leg is still jumping about from time to time.  Dystonia is under control.  Dyskinesia – still there, but I have got so used to it that I seldom dwell upon it.  My voice is weaker today, but that’s ok – I don’t speak to anyone or anything (apart from a brief conversation with the dog) all day.  Rigidity and muscular weakness are no better and no worse.  I’m lumbering a little better when I take the dog for her walks, so I think that’s an improvement.  Balance must be improved also, because I haven’t had to catch myself at all today – or perhaps that’s because I’m spending so much time sitting on my backside at the moment…  Whatever!

I intended to do some more filming for my “DBS on/DBS off” video, but instead decided to do some work on the script for my weekly vlog.  I also intended to recreate the script for my “DBS on/DBS off video”, but I simply didn’t get around to it.  Our Granddaughter is spending the day at our house this Friday, so I won’t really have the opportunity to film myself for my vlog.  I am aiming to film myself (and bung the video onto my MacBook) on Thursday afternoon, so I can then edit the vlog sometime on Friday.  I need to have the script finished by lunchtime tomorrow – plenty of time, but I am making such slow progress (with everything) at the moment.

I edit some stills from the video I shot yesterday, showing the effect that DBS has upon my handwriting and other fine motor skills, and post them to Instagram, Twitter and Facebook.   There wasn’t really any need to do so, so I guess I’m just avoiding writing scripts.

When I return from this afternoon’s dog walk, I fill the log basket, and light the fire – it’s quite mild out there today, but I’m feeling cold!

Card – check!  Flowers – check!  Chocolates – check!

Okay, I’m ready for Valentine’s Day.

I am determined to start filming my “DBS on/DBS off” video today.  Even so, it’s mid-afternoon before I have decided upon the shots I am going to take, cleared the dining table and set up the camera and tripod.  I turn my DBS off and start shaking for the camera.  I try mapping my tremor again, trying to draw a straight line (freehand, with no support to my hand or arm) alongside a ruled line, then I try drawing a spiral (again, freehand, with no support to my hand or arm).  I produce a sample of my handwriting, and then attempt my signature – both are appalling!

I switch my DBS back on again. Phew!  What a relief!

I repeat the previous exercises with the benefit of a couple of volts of electricity and, although my handwriting isn’t great and my signature is a scrawl, the difference is absolutely amazing.  I had been noticing some tremor breaking through in my right arm and my left leg this morning – this really puts it all into perspective.

I clear the filming paraphernalia out of the way, and then the dog takes me out for some exercise.  The day has passed in a flash, and I really don’t feel that I have done very much.  I have done something, though, and that’s the main thing.  I split some logs, fill the log basket and lay the fire for this evening.

I chill the champagne, wrap the chocolates and wait for my wife to return from work.

I’m still feeling fairly unmotivated, and am struggling to do the simplest of things.  My wife is using my car today because her car is being repaired – this wouldn’t normally be a problem, but today I could do  with going to North Walsham and instead I find myself confined to Southrepps.  Never mind, I’ll just have to go there this evening when my wife returns from work.

I have some tremor on both sides (again) today, but it’s not bothering me (too much).  My dystonia, which was bad yesterday, is much better today.  My voice is improved.  My muscular stiffness and weakness is uncomfortable, my walking isn’t great, my balance is rubbish, but these are all manageable.  In fact the only thing that is bothering me is my lack of motivation.  It’s the end of the day now, and the only thing that I have been doing plenty of, is nothing!

That’s not strictly true, but it is how I feel.

I have walked the dog twice.  I have sorted out some things for my neighbour, who is currently in hospital.  I have responded to a couple of emails that have been sitting in my inbox for several days now.  I have split some logs, got some kindling in from the garden shed, filled the log basket and lit the fire.  I have groomed the dog, because she’s losing her coat at the moment.  Last (but not least) I have vacuumed downstairs.

That’s not a bad list of accomplishments for someone who is lacking motivation, but I still feel pretty wretched.

When my wife arrives home, I drive to North Walsham while she is preparing our dinner, and do the things that I need to do.

After dinner, we sit down to finish watching the documentary (about debt) that we started watching last night (“Strawman – The Nature Of The Cage“) which is proving extremely interesting!

After the hubbub of people in the house yesterday, I am craving a day of peace and quiet – just the wife and I, 1 dog and a blazing fire.  I’m feeling unsociable today!

My wife is going swimming with our granddaughter this morning, so she is out of the house by 9.30am.  It’s a cold and miserable day here in Southrepps – 2º Centigrade, heavy, dark clouds and a fine drizzle.  Perfect weather for walking the dog, so (of course) that’s what I do.  I follow up this act of bravado with a log splitting session in the back garden, and bring in a basketful of logs for the fire, which I’ll be lighting a little later on.

I get a morning of peace and quiet (just me and the dog), but this afternoon we go to the Norfolk and Norwich Hospital to visit my elderly neighbour who is still being treated for an infected leg.  I also need to help my wife drop her car off at the local garage this afternoon, where it is being repaired next week (the windscreen wipers have packed up – not an ideal situation in this weather!), so we do that on our way to the hospital.

My neighbour seems to be in good spirits, and is keen to get himself out of hospital as soon as possible.  We take him a couple of packets of ginger nuts, a book to read and a newspaper – that should keep him quiet for the next 24 hours or so.

We get home at dusk – just enough light for me to take the dog for a quick walk so she can do her business.  Then I light the fire while my wife prepares our dinner.

After dinner I decide to self medicate with a little cannabis – my tremor is better than it was yesterday, but still being a bit of a nuisance in my right arm and leg.  Dystonia in my right foot is pretty uncomfortable, too.  Dyskinesia seems to be about the same as it has been for some time now.

We settle down to watch another Patient Zero Productions documentary, which we were discussing with the film crew yesterday, about money and debt, entitled “Strawman – The Nature Of The Cage“.  Fascinating stuff!

 

 

We have a film crew in the house this afternoon – Patient Zero Productions are coming to interview me for a documentary about cannabis, called The God Plant.  This means the house has to be cleaned from top to bottom this morning (says my wife).

We get up at a reasonable time (for a Saturday), and I take the dog for her morning walk while my wife gets stuck in to the house cleaning.  Then I get stuck into scripting my answers to the questions that I am going to be asked later on.  I’d love to think that I could simply answer “off the cuff” as I would have done in the dim and distant past (before Parkinson’s), but I know from experience that my stream of words will dry to a trickle before grinding to an embarrassing halt.

My wife has just about got the house straight by the time the film crew arrive.  Some time is spent turning the downstairs into a studio, setting up the camera and tripod and the snazzy LED light units – some very nice equipment (I’m jealous).  We film 2 takes of each interview question, and a couple of supplementary questions (for which I hadn’t prepared – seemed to go alright, though!), and then I’m asked if I would demonstrate what happens when I turn my DBS off.  So, I turn my DBS off, and within a few minutes become a shaking wreck of a man.  The stress of being in front of the camera was already apparent, ably demonstrated by the strong tremor in my left leg, but turning off the power takes things to another dimension.  Would I vape some cannabis to show the effect on my tremor?  Why not…  So, I vape some cannabis and we wait (10 minutes) while it takes effect.  The guys are amazed at the transformation that occurs before their very eyes, and manage to capture some good footage.  I switch my DBS back on again, and feel very grateful for the tingle of electricity that courses throughout my body – who would have thought that a couple of volts could feel so good?

The crew pack their gear away and depart, and my wife and I take the dog for her afternoon exercise.  It’s flipping freezing outside, and I’m glad to get back in the house and light the fire.

My wife cooks us a delicious green Thai curry, and then we crack open a couple of beers and settle down in front of the telly for the evening.

Things don’t go quite as planned. I didn’t finish my script for this week’s vlog, so I can’t start filming as soon as my wife has left for work this morning.

I take the dog for her walk, because otherwise she’ll give me no peace, and then settle down with my iPad to finish the script. It takes me an hour or so, but finally I finish. I load it into my teleprompter app, rehearse a couple of times, set up the camera and tripod and start filming myself. I’m doing much better than when I filmed last weeks vlog – I have one false start, and then two good takes that give me sufficient footage for editing.

My tremor seems milder today, so I’m obviously almost recovered from Tuesday.  Its still present, mainly on my left side, but less troublesome than yesterday. My voice is weaker, though, and I’m slurring slightly – I hope it isn’t too noticeable on my video.

I download the raw footage to my MacBook, edit my vlog, upload it to YouTube and publish it.

I had intended to do some preparation for my interview for The God Plant documentary tomorrow, but I’m running out of time.  I get some logs in, light the fire and then vacuum downstairs.

We are babysitting our granddaughter tonight – my wife’s eldest son and his fiancee are going out to dinner to celebrate 10 years together – so we eat as soon as my wife gets through the door, and then jump in the car and go to Hevingham for the evening.

I had a good night’s sleep, my wife did not. We wake when the alarm goes off at 7am, but don’t get out of our cosy bed until 7.30am.

Outside there is no frost on the cars, but it looks bleak and Wintry.   It is just as chilly as it looks, as I find out when I take the dog for her morning exercise.  It’s trying to snow.  I won’t be going very far today, which is just as well, given current energy and motivation.  I motivate myself to light the fire, get a basket of  logs in from the back garden and devote the rest of the day to keeping warm!

Despite having plenty of sleep last night, I’m still feeling whacked.  Probably due to the long day we had on Tuesday – sometimes it takes me a couple of days to recover, if I have overdone things.  Tremor is present, mainly in my left leg, but occasionally putting in an appearance in my right arm.  Dystonia is bearable.  I’m only aware of dyskinesia when I get up from the sofa – my right arm tends to flail around somewhat.  My right shoulder is still uncomfortable following my fall a couple of weeks (or more) ago, when I pitched into the sofa as I as trying to sit down – and no, I still haven’t been to see the doctor about it.  My left shoulder has now decided to join the party, and is quite painful.  It may be because I have slept awkwardly, but I think it is more likely to do with my Parkinson’s.  I have met several people with Parkinson’s recently who have mentioned shoulder pain as being one of their main symptoms, and have counted myself lucky not to suffer with it.  Perhaps mine is coming out in sympathy!  Rigidity, generally, is still a problem.  Muscular rigidity and weakness in my arms is still bloody painful!  My voice is weak, but it’s been worse.  Overall?  I’ll live.

I decide to spend the afternoon working on the script for my vlog this week, which is the second part of my “Deciding to have Deep Brain Stimulation surgery” topic.  I’m trying to keep it reasonably short – Part 1 was over 5 minutes long, and I’d like Part 2 to be no longer than that, but I have so much to say…  I’ll just have to film it tomorrow and see how long it ends up.  I’ll try to get my vlog done by lunchtime tomorrow – we have a film crew from the production company that is interviewing me for “The God Plant” documentary, coming to the house on Saturday morning, so I want to spend some time cleaning and tidying the house before they get here (and before my wife does it all).  I also need to spend some time reading through the interview questions that they have emailed to me – mild cognitive impairment in the form of lack of fluidity of thought and speech means that I need to be prepared with at least some idea of how I will answer them.

My wife is up and out of the house by 8am.   I have a lie in until 9am.  I’m absolutely whacked after yesterday – a long day following a really early start after having had less than 4 hours sleep.  I am taking it easy and having a day of recovery today.  I wish I could motivate myself to do more, but I’m struggling to make myself take the dog for her morning walk – of course, I do take her;  I just don’t want to!

It doesn’t help that it’s a cold day here in Norfolk, and it’s spitting rain that is trying to be snow.  I clean the woodburning stove, get some logs in from the garden and light a fire.

My tremor is particularly bad this morning, breaking through (quite violently, at times) on my right side.  I was so tired when we got home yesterday that I forgot to change my device settings at bedtime last night.  I must have been tired – I didn’t wake multiple times with dyskinesia as I usually do when my night time settings are too high.  My walking is poor, dystonia and dyskinesia more pronounced.  Energy and motivation are on the floor, but my mood remains pretty good (surprisingly!).  I suspect my increased symptoms are due to my current state of tiredness, and will improve when I have caught up with my sleep.

I give myself a stern talking-to, and clean the hearth, empty/load the dishwasher and vacuum downstairs before my wife returns home from work – after all, she had a long day yesterday, as well!

The dog is looking at me expectantly, so I take her for another walk and to chase the ball for a little while.  She is such a patient, tolerant animal that I simply can’t deny her – it’s not her fault that I am feeling this way.

An early night is a must, tonight.

Today is a sad day.  Today is the day of my wife’s grandma’s funeral.  A day for saying goodbye.

The funeral is in Bramley in Hampshire, almost 200 miles away from where we are in Norfolk.  The service is at 11am, so we are up and out of bed at 4.30am, and on the road by 5am – picking up my wife’s eldest son and his fiancee on the way.  At first the roads are clear and we make good progress, but by the time we are on the outskirts of London then rush hour has well and truly begun, and we are in really heavy slow traffic.

We had thought that by leaving home at 5am we would be a couple of hours early on arrival at the church, but the heavy traffic meant that we were there just 30 minutes before the appointed time.  We travelled in my wife’s car today, which is a manual (stick shift), doesn’t have cruise control and is much more of a challenge for me to drive smoothly.  Fortunately my tremor is under control today, and what little there is is in my left leg, so that means that I can share the driving with my wife.

We drove most of the way to Hampshire through the rain, but the sun was shining by the time we arrived.  The service went smoothly, the tributes were warm and heartfelt, and I think we all felt emotionally drained by the time it was all over.  The wake was held in a local pub, where we ate from a lovely buffet, and spent a couple of hours chatting and reminiscing with friends and family members.  And then it was time to return to to Norfolk, breaking the journey at Stevenage to drop in on my daughter for a swift cup of tea / coffee.  We arrive home at 10pm, both of us feeling completely exhausted.

I still have a couple of emails from last week that I haven’t replied to – I keep meaning to do so, and then don’t.  I keep trying to persuade myself that I’m okay, that I don’t have a motivation problem, but really and truly I think that I have.

I want to get on with my “DBS on/DBS off” video – I filmed quite a lot previously, but I’m really not happy with the camera angles and want to shoot it all again.  I set the camera and tripod up, experiment with lighting and angles, and then take the dog for a walk (because she is pestering me).

When we get back, I have a look at the script, which I spent some time last week putting together for the video, so I can decide on the order of shots.   While I’m scrolling around the script editor, I somehow manage to delete the entire script!  I can’t believe it!  What a careless idiot!  I spend an hour or so searching around for my latest iPad backup, but it seems I haven’t backed it up since I wrote that script – so it’s just lost…  A whole day’s work down the tubes.

Oh, well.  I unplug all of the equipment and  put it out of the way again.  I decide that I’m going to sit down and write the script again after I have walked the dog (again) and got some logs in for the fire, but by the time I have done that, my wife is home – so I light the fire and save the re-scripting for another day.

We are going to Hampshire tomorrow for the funeral of my wife’s grandma, so we will be leaving here at 5am.  An early night is called for!

We are expecting visitors this afternoon – a friend of a friend of a friend (who has Parkinson’s Disease) has been following my blog and watching my videos on my YouTube channel and would like to talk to someone who is in the same boat.

We also have to prepare for the funeral of my wife’s grandma this week, so my wife wants to go out to buy some new black trousers to wear.  I need to make sure that my black trousers will still fit me, find a decent shirt to wear and my black tie.  So my wife walks the dog and then we go to Roy’s of Wroxham.   Unbelievably, my wife finds some trousers that she likes almost immediately, tries them on (they fit!), buys them and we are back in the car again within the half hour.  Once home, I try my black trousers on (which fit!), choose a shirt to wear and locate my black tie.  All sorted for Tuesday, then.

My tremor seems to be behaving itself a little better today, and my voice isn’t quite as strained as it has been the last couple of days.  My walking is also not as bad as it has been, although it is still a little wooden.

I split some logs, fill the log basket and light the fire while my wife is busy walking the dog (again), cleaning upstairs and doing the laundry.  Then I vacuum downstairs, my wife mops the kitchen floor and we are ready for our visitors.

They arrive, and we spend a pleasant hour or two chatting about our experiences with Parkinson’s Disease (both from the perspective of being a person with Parkinson’s, and being the partner of someone who has Parkinson’s), our (largely negative) experiences of the health professionals on whom we rely, and the various medications that we have had experience of.

After they have departed, we have some dinner and settle down in front of the telly (and the fire) for the evening.

I slept through until 6.30am, paid a visit to the smallest room and returned to the land of nod until almost 11am (well, we did have a late night!).  Tremor is fairly strong in both of my legs this morning, but I am still changing my device over to Group “B”settings at bedtime, and these settings are a lower level of stimulation than the Group “A” settings that I use during the day.  I change my device over to Group “A” settings and, although my tremor doesn’t disappear completely, at least my right leg stops jumping around quite so much.  My voice is still quite weak, but I accept that as a price worth paying for keeping my tremor under control (almost).

My wife makes the morning tea/coffee and Nutriblasts and then takes the dog for a good long walk while I deal with several emails that are sitting in my inbox and need to be replied to.  I have an email from the television company that are interviewing me for the documentary (The God Plant), confirming the date of the interview (11th February) and giving me an outline of the questions that they want to ask me (so that I can be prepared).  I email them back to confirm the date, and ask what time they will be arriving.  A couple more emails are from people who have seen my YouTube videos and have questions for me.  I answer their queries as best I can.

This afternoon we are visiting my elderly next door neighbour in the Norfolk and Norwich Hospital.  We find him in good spirits – he’s enjoying having 3 square meals a day without having to cook them himself.  His leg is still horribly swollen and painful, though, and he won’t be coming home in a hurry – he has terrible rheumatoid arthritis and struggles to climb the stairs at home on a good day, let alone when his leg is in the state that it’s currently in.  My wife goes to the hospital shop and gets him a couple of packets of biscuits and a newspaper before we depart for home.

I’m almost falling asleep on the journey home (my wife was driving!), so we plan to have a bite to eat, watch a movie on Netflix and get a (relatively) early night.

I slept better last night, and feel more “with it” today.

I get busy trying to finish off my script for this week’s vlog about my decision to have Deep Brain Stimulation surgery.  It becomes apparent that I have far too much to say on the matter, and my vlog will end up being 10 minutes long rather than the 4 minutes that I’m aiming for, so I decide to split it into 2 parts and publish part 1 today, part 2 next Friday.

I sort the camera and tripod out, load my script into the teleprompter app on my iPad, and set about filming myself.

I’m completely useless in front of the camera today – fluffing my lines so many times I start to lose my normal good humour.  Then I start having trouble with my voice – losing it mid-sentence, or strangling the ends of my sentences – most annoying!  At the same time, my left leg tremor is going through the roof (probably because I’m getting stressed), and that just adds to my difficulties.

Finally I get sufficient footage to edit, so I load the video onto my MacBook, put all of the equipment away and start editing.  I realise that I’ve missed out (from my script) some details of my assessment for DBS, so, cursing loudly, I get everything set up again, amend the script and set about filming the couple of sentences that I had missed out.  4 takes later, I’m satisfied with what I have captured, so import the newly captured video to my MacBook, put all the equipment away (again) and get on with the job of making a silk purse from a sow’s ear.

I pause, mid-edit, to take the dog out for walk and load the log basket.

By the time my wife returns from work, I have completed the edit, loaded my latest vlog to my YouTube Channel and published it.  Ta-dah!!!!

We are going over to see one of our neighbours this evening – they want my wife to quote for some soft furnishings.  We have been on friendly terms with them since I bought the house in the village, but we haven’t really got to know them beyond saying “Hello” in the street, or chatting when we bump into each other when walking our dogs.  We take some flowers and a bottle of wine, and have a very pleasant evening (during which very little attention was given to soft furnishings – my wife is going back to measure up at a later date) and we emerged shortly before midnight having set the world to rights, demolishing 2 bottles of wine in the process!

I have a disturbed night because my wife couldn’t sleep, so today I’m feeling very tired again.  My tremor is back in my left leg this morning, but well under control on my right side.

I still haven’t finished scripting my “DBS on/DBS off” video, so I sit and work on that some more (after walking the dog).  I also have some ideas for this week’s vlog, triggered by a comment in one of the Parkinson’s Disease groups on Facebook, and start making some notes towards that script as well.  I’m really not doing very much at the moment, and I’m not sure why!  I have quite a lot of things that I would like to do, but don’t seem to be achieving any of them.  Perhaps it’s just a glitch caused by being tired…  I’m still doing the essentials though – the dog gets her walks no matter how I am feeling, I split logs and fill the log basket every day and i vacuum downstairs and keep things reasonably tidy so that my wife doesn’t have to do it when she gets home from work.  When I start dodging any of those tasks, then I will know I have a problem!

My wife returns from work, and we have a swift bite to eat  before going to Lidl in North Walsham to do some grocery shopping.  I light the fire when we get back home, and we settle down to watch a film on Netflix.

I managed to catch up with my sleep last night – we had an early night, I went straight off to sleep (with a little help from cannabis) and slept right through until shortly before the alarm clock went off at 7am.

I intend to do some more filming for my “DBS on/DBS off” video today, so I review the footage that I shot a couple of days ago.  I’m really not happy with the camera angles that I used, and feel inclined to bin the lot and start again – in fact (aside from a couple of shots that I think I can use) that’s exactly what I’m going to do.  I decide that I need to script the video before shooting any more footage – having a script helps me to decide upon the shots that I require, and also “shapes” the video – so I sit on the sofa with my iPad and start scripting.

My tremor is breaking through more in my right arm than in my left leg, for a change, but it is quite variable – one minute I’m shaking like a very shaky thing, the next it’s all back under control.  Motivation and energy seem better than yesterday, although I do feel quite inclined do do absolutely nothing.  I fight off the urge, and take the dog for a walk instead.  It’s a nasty wet and chilly day in Southrepps today, so I decide to light a fire.  That also prevents me from just sitting around – logs have to be split and the log basket filled, so I swing the log splitting axe for 5 minutes or so and bring the logs in.

My voice isn’t particularly strong at the moment, but it has been this way for quite a while now.  Mostly my symptoms seem to be fairly stable.  The only thing that really varies on a day to day basis (and sometimes from hour to hour) is my  tremor, but as long as it remains manageable then I can deal with it.  I am resisting making any adjustment to my device because I don’t want to aggravate my dyskinesia.

My elderly next door neighbour was taken ill yesterday evening.  The first I knew of it was when another of my neighbours knocked on my door to tell me that an ambulance had been called to take him to the Norfolk & Norwich hospital.  My wife and I spent the evening sitting with our neighbour waiting for the ambulance to turn up.  At 11pm, we left him alone and went back to our house to get some sleep.  My wife went to bed, and I sat downstairs in the lounge, waiting – I have a front door key to my neighbour’s house, and I need to let the ambulance crew in when they arrive.  At 2am my wife calls me to come to bed, and I’m falling asleep on the sofa so I go upstairs, undress and get into bed.  The ambulance arrives at 2.15am – over 9 hours since it was called for.  I realise that my neighbour wasn’t considered a priority case, but to keep him waiting for that length of time seems unreasonable to me.

I have a little bit of a lie-in in the morning, getting up just before 9am.  I feel as if I’ve hand no sleep at all – totally exhausted!  I intended to finish off filming my “DBS on/DBS off” video today, but I just can’t make myself get up from the sofa and get on with it.  Tremor is controlled as is dystonia.  Dyskinesia is no better, but no worse.  Voice, ditto.  Rigidity and muscular stiffness, ditto.  Mood is good, but motivation and energy are severely lacking today.  In the end, all that I achieve today is a couple of dog walks and ten minutes in the back garden splitting some logs for the fire tonight – better than nothing, I suppose.

I light the fire (it’s definitely a little bit parky out there), and promise myself an early night tonight.

I really want to start taking the mannitol that I recently purchased, so need to record the current state of my symptoms so that I can tell if the mannitol is having any effect.  The easiest way to do this is by turning my DBS off and filming myself.  I have been planning to do a couple of “DBS on/DBS off” videos for my YouTube channel in any case, so perhaps I can kill 2 birds with 1 stone!

I turn my DBS off.  I wonder if the neurostimulator turns itself off gradually rather than being instantly switched off – it takes a few minutes before I feel any difference.  When the NHNN play around with my neurostimulator (when they re-program it) then I feel the changes instantly.  I set up the camera and tripod and film myself doing the usual motor skill exercises that the neurologists have us do:- drawing a freehand spiral, a sample of handwriting, signing my own name.  I record my tremor by drawing a straight line (using a straight edge) on a piece of paper, and then slowly attempting to draw a freehand line next to it, my tremor showing as a deviation either side of the straight line.  I pour a bottle of beer into a pint glass without resting the neck of the bottle against the glass while pouring – I actually manage to pour it without spilling any, although I have to stop and regain control 2 or 3 times.

By the time I finish filming, I’m really glad to turn my DBS back on.  I had forgotten how tiring it is to just be shaking constantly, let alone the discomfort from my dystonia.  Tremor control returns with a welcome tingle of electricity that I feel throughout my body – I’m so grateful for my DBS!

I walk the dog, get the logs in, and then clear away the camera and related paraphernalia.  I just have time to light the fire before my wife returns home from work.

I need to plan my days and weeks a little better.  I have so much to do, and yet never seem to achieve very much.  If I can plan to do just a couple of hours per week working on the various projects around the house that I have started and not finished, then perhaps I’ll feel a little better about myself.  As it is, my wife seems to do the lion’s share, and I’m not much help, really.

I need to make a frame and door for the cupboard in the dining room (which is just a set of open shelves at the moment).  I need to make cupboard doors for the base units in the kitchen.  I need to make doors for the lounge/hallway, bathroom and cupboard in our bedroom.  I need to replace the bath and finish tiling the bathroom walls so that we can use the shower (we are both fed up of having to have baths every day).  Most of all. I need to locate all of the tools and materials required to accomplish the aforementioned tasks – a major task in itself!

My wife walks the dog, and then goes off to do some more work on the allotment.  I go along to help, and manage about 10 minutes of digging before I’m knackered and heading back home for a sit down.  I do manage to split a few logs and fill the log basket.

My tremor doesn’t seem so bad today – it’s still very close to the surface, but only breaking through occasionally.  Dyskinesia is still there, but not a problem.  Dystonia, ditto.  Rigidity was very noticeable when I was trying to pull up weeds at the allotment, but in reality is much the same as it has been recently.

We go to see my wife’s parents this afternoon.  At least that stops my wife from doing chores for a couple of hours.

I spent this morning catching up on my emails – I needed to write to my contact at the Cleveland Cannabis College about the video that I recorded for him, also to Karl Sterling who sent me an email about his Parkinson’s Regeneration Training program a couple of days ago, and last (but not least) the film company that approached me for an interview for their documentary (The God Plant).

My wife is intent on doing some work at the allotment today, so she disappears and leaves me to it.  I decide to do some of the household chores that my wife usually does at the weekend, as well as a couple of tasks that I usually take responsibility for.  So, I get a load of kindling from the garden shed and stack it by the fire, then I swing the log splitting axe for 10 or 15 minutes, and fill the log basket for the fire this evening.  I vacuum the kitchen, dining room, lounge and staircase and clean the hearth.  I clean the glass windows on the woodburner, and then wash the lounge windows (which are getting extremely grubby).  I’m glad to be making myself useful, but when my wife returns, she is a bit miffed that I’ve been doing “her” jobs.

I take the dog for her afternoon walk, and light the fire when we get back – it’s decidedly chilly out there today!

Symptom check: tremor still breaking through (both sides); dyskinesia a little better today; dystonia much the same as yesterday; voice much the same as yesterday; balance and walking are fair to middling; mood, motivation and energy are all good; rigidity and muscular weakness and stiffness are all unchanged and bothering me less today.

I am still very shaky today, and dyskinesia is still making me very cautious as I drink my morning cup of tea.  Dystonia is under control.  Balance isn’t so bad, but walking is a little stilted today. My mood, motivation and energy have all been pretty good for the last few weeks.  Rigidity and muscular weakness and stiffness are bothering me at the moment, but all seem to be (marginally) better than they were last week.  My wife takes the dog out before she goes to work, so that’s one thing I don’t have to worry about doing this morning.

It’s Vlog day, so I need to come up with a subject, and then write a script of some sort.  I decide to write about how important exercise is for people with Parkinson’s, and settle down on the sofa with my iPad to scribble a few notes.

By the time I have finished the script, filmed myself, imported the raw footage to my MacBook and edited my vlog, it’s time to take the dog for her afternoon walk.  So we go over to the playing field by the village hall, and I chuck the ball for her for a little while.  It’s starting to get dark by the time we get back home, so I start uploading my vlog to my YouTube channel and then get the wood splitting axe out of the garden shed and spend 15 minutes or so splitting logs and filling the log basket for this evening’s fire.

I light the fire and put away my vlog paraphernalia (camera, tripod, various leads and equipment stands) so that the lounge is tidy and snug for when my wife gets home from work.  My tremor is still bothering me, so I decide to self-medicate with a little cannabis, and that helps me to relax.

I slept well again, getting off to sleep without too much trouble (cannabis helped!) and not waking until around 6.30am.  My wife and I both get up just after 7am, and my wife prepares my morning cuppa and Nutriblast before dashing off to work.

I have quite a lot that I would like to achieve today.  I want to finish editing my CBD oil review video, get it uploaded to my YouTube channel and published.  I also want to try to record (on video) the current state of my tremors, balance, walking and gait, along with some form of commentary on my “invisible” symptoms – I’m keen to start trying the mannitol that I purchased recently, but need to be able to pinpoint any changes in my condition.  My tremor is really not great today, mind you.  It is breaking through on both sides (left leg and right arm), and the only thing that’s stopping me from making adjustments to my neurostimulator is the fact  that my dyskinesia is a lot worse today, also.  For the first time in a long time I find myself fighting the twitch in my right arm, trying (unsuccessfully) not to spill my cup of tea.

I’m busily editing my review video when I get a phone call from my eldest nephew wanting to call around to see me.  Of course, I said “yes”!  We have a cup of tea/coffee and a chinwag whilst playing music videos on YouTube and catching up on events since we last saw each other.  When I offer him another cup of coffee, he suggests that we pop into The Vernon Arms for a beer, and it seems churlish to refuse – he is such a bad influence!  While enjoying a pint of Abbot Ale, we play a game of pool (very badly) and I win in spite of my shaking.

After he departs, I finish off the video and upload  it to YouTube just as my wife arrives home from work.  Perhaps today wasn’t the best day to record my symptoms anyway…

I remembered to self-medicate with cannabis last night and, consequently, had no trouble in getting off to sleep (or staying that way).  I slept really well, and felt much more rested this morning than I have been of late.  Tremor is still breaking through on my left side (mainly my leg) but I’m not feeling quite so weak on the muscle front – I’m not struggling (quite so much) when getting up from a seated position.  I am wheezing to excess, though – I think it must be due to my recent cold bug (Queen’s cough!), so I’m hoping it will get better in the next few days.

I had a YouTube message from a documentary filmmaker who is currently working on a documentary called The God Plant.  It’s about the many uses of the cannabis plant, but particularly its medicinal applications.  He was very complimentary about my latest vlog, and also about my Parkinson’s Tremor Control video.  He would like to interview me for inclusion in the documentary, and called me today to discuss my involvement.  So, it looks like the production company will be coming to sleepy Southrepps in early February to record an interview with me, which should prove very interesting!

I finish off the script I have been writing for the CBD oil review video, and then set-up the camera, tripod and teleprompter app in the kitchen.  I managed to film myself (only took 3 takes!) and then import the video onto my MacBook ready for editing.

The dog takes me for a walk, and then I fill the log basket and light the fire.

 

We had an early night last night, but it took me ages to get off to sleep.  I had the same problem the night before – wide awake for ages, and then the restless legs kick in…  I meant to self medicate with a little cannabis before going to bed last night, but forgot to do so.  I’ll try to remember to do so tonight!

My wife is babysitting our granddaughter this morning, so she is up and out of the house by 6.30am.   I have a lie in and get up at 7.30.

I start working on my CBD oil review video (after walking the dog) and import the raw footage onto my MacBook.  I will need to film some pieces to camera to link it all together, so I bring my camera and tripod into the dining room and then set about writing a script.

When I planned a day of filming and editing for today, I had forgotten a minor detail – we are having a trailer-load of logs delivered this afternoon and I need to prepare for them!  I clean the log basket out, sweep the hearth and vacuum downstairs.  Then I go into the back garden and sort out the tarpaulin that we use to cover the logs.  Just enough time to take the dog for her afternoon exercise before the logs are delivered…

My balance (and walking) seem a little better today.  Left leg tremor is being a bloody nuisance – might have to have a think about increasing the voltage on the left side, but not today.  Dyskinesia is in my neck (to a degree), and increasing the voltage on the left has (previously) increased dyskinesia in my neck.  Rigidity is still proving a problem, and I really notice it when I am having to bend over to prepare the space in which to stack the logs.

The logs arrive and are unceremoniously dumped in the road by the gate that accesses our back garden.  My wife arrives home, bang on cue, to help me carry the logs into the back garden and stack them against the back wall.  One of our neighbours sees my wife and I struggling with the huge pile of logs, arrives with a wheelbarrow and proceeds to help us move the wood – isn’t it nice to have good neighbours?

Darkness falls as we are stacking the last of the logs, so my wife finishes the stacking while I carry the (full) log basket into the house and get the fire lit.

I’m feeling much more human today – back to normal (almost).  My wife and I get up just after 7am, and my wife kindly takes the dog for her morning walk – not that I couldn’t have, but it is an extremely cold morning this morning, so I am glad not to be going out in it!  Unfortunately, the dog is as much a creature of habit as I am, and so leaps to her feet excitedly every time I move (between 10am and 3pm), thinking that she is getting another morning walk.  At 3pm I relent and take her out to play ball for a little while.

My latest vlog (about Parkinson’s Disease awareness) has been getting quite a lot of comment on Facebook, YouTube and Instagram, and has been viewed over 200 times this morning (I only published it yesterday evening), so I’m feeling pleased about that.  I have been reading up on YouTube channels, and need to make some changes to my channel in order for my videos to be more easily found by people, so I settle down with my laptop and make the requisite changes.

I find that my old friend, the left leg tremor, returns as soon as I have the laptop on my lap, so I quit fighting it and sit up at the dining table to work.  My voice was a little strangled this morning, but it has got better as the day goes by.  My balance, combined with the muscle weakness in my legs, is giving my wife (and me, if I’m honest) a few scary moments, but I have managed (so far) to avoid falling.

When I have finished tweaking my YouTube account, I review some of the video that I recorded some weeks ago when I was trying some of the CBD oil that the Polish medical marijuana website sent to me – I intended to edit the review and get it published today, but it’s now almost 6pm and I haven’t even imported the video onto my MacBook, so I expect that’ll be a job for tomorrow now.

I need to make an accurate record of my current symptoms so that I can get on with taking the mannitol that I ordered (if you want to know about mannitol, look here), so I think the best method of doing that will be to switch my DBS off for the morning, and video myself.  I have been meaning to film a “DBS on / DBS off” video for quite some time, and I think that now (well, tomorrow) could be as good a time as any!

I slept better last night, and even managed to lie in until 9am.  I feel a little bit less like I’ve had a good kicking, so I’d say that I’m recovering nicely.

I manage a cup of tea and a Nutriblast without feeling nauseous, so that’s a good sign, too.  I decide that I’m feeling well enough to do the vlog that I was too ill to produce on Friday, so I set about writing a script, and then film myself while my wife is out walking the dog.

My dystonia is improved this morning, and so is my dyskinesia, but tremor is still a feature in my left leg.  My balance is rubbish, and my voice not as strong as it has been for the last few days.  Overall?  I’m not complaining.

My wife leaves me (and the dog) at home while she goes to do some work up at our allotment, so I import the video to my MacBook, edit my vlog and then publish it on my YouTube channel.

I post links to my vlog on Facebook, Twitter and Instagram, and that’s me finished for the day.

I had another restless, uncomfortable night.  The stomach bug is on its way out, so at least I’m no longer puking, but I do feel like I’ve been kicked in the guts.  Being ill doesn’t agree with my Parkinson’s Disease, so my tremor is more pronounced, my dyskinesia is worse, dystonia is a pain in the….. foot.  Basically I ache all over and I’m feeling sorry for myself!

I get up around 7.30am and light the fire.  I manage to drink a cup of tea and eat a couple of Rich Tea biscuits – the first thing I’ve eaten since Thursday evening.  My wife walks the dog – I stay in the warm.

My wife disappears off to Lidl in North Walsham to get some groceries while I stay in the house and keep the fire stoked (well, someone had to do it!).

We are going out to dinner this evening to The Buckinghamshire Arms in Blickling – it’s a surprise birthday party for my wife’s eldest son, who turned 30 years old on Wednesday.  At least 4 of us attending this evening have had this damn stomach bug this week, so the conversation should be lively even if the eating and drinking will be somewhat restrained.

The party is a great success, and the surprise element maintained right up until the last minute.  I tried to select something easy on the stomach, but by the time we get back home I’m wishing I hadn’t eaten at all – time for a little digestif!

I’m bugged – stomach bugged, that is.  My wife was ill with this bug about 10 days ago, and I thought I had got away with it…  I spent a good portion of last night shouting for “Ralph” on the great white telephone.   The rest of the time I was alternating between the shivers and being too hot.  At 7,30 I got up and went downstairs – I was just too uncomfortable lying in bed.

I decide that I am too ill to do my vlog today, so I post an apology video to my YouTube channel and resolve to do it at some stage over the weekend (assuming I’m feeling better than I am right now).

My wife lights the fire for me and leaves me in the company of a packet of Rich Tea biscuits and a bottle of Lucozade.   I spend the day lying on the sofa, and snoozing most of the time, awakening periodically to feed the fire and take more paracetamol.

I was only fooling myself, thinking that I could finish transcribing the audio from my interview with Karl Sterling yesterday.  There’s still 5 minutes or so that I haven’t yet done.

I get the routine tasks out of the way (tea, Nutriblast, dog walk, PopMaster) and then sit down and finish the transcription.  Next task is to film my side of the interview, so I set up the camera and tripod and load the script into the teleprompter app on my iPad.  I manage to get most of it in a single take, just requiring another take for a couple of questions that I managed to louse up.

I take a break around 3pm to dash out to get some logs for the fire (we have run out of logs at home until the next delivery, next week), and then take the dog for a ball chasing excursion.

My tremor is breaking through on my right arm and left leg today, but not too seriously.  Dystonia in my right foot is also playing up.  The thing that is troubling me most at the moment, though, is muscular weakness (in my legs, making it extremely difficult to get up off the sofa without causing a scene) and muscular stiffness in my right arm, which is affecting pretty much everything that involves using my right arm, from switching the table lamp on or off, to picking up my mug of tea.

I transfer the video to my MacBook and then send it to Karl in New York via Google Drive.  I intended to do some work on the script for this week’s vlog today, but I’m tired and not feeling up to it, so that’s a job for tomorrow morning.  I’m getting an early night tonight!

 

My son and his girlfriend are driving back to Dorset this morning, so we are all up at a decent hour and I make a bacon butty for my son and some sausages (yes, just sausages) for his girlfriend.  They scoff the food, swill it down with a quick cup of tea and then depart.

My wife is making desserts again – it is her eldest son’s 30th birthday today, and we are going round to have dinner with him, his fiancee, our granddaughter and a whole bunch of other family members this evening.

I am scripting and filming today – I did an audio interview with Karl Sterling the other day, and we have decided that the audio quality isn’t good enough.  So, I’m going to film my half of the interview, Karl will do his half in New York, and then he will edit the 2 halves together.  First I have to listen to the audio interview and transcribe all of the questions and answers, so that I can (fairly) accurately recreate it in front of the camera.  The interview is almost 40 minutes long, and transcribing it takes me all flipping day.  I take the dog out (twice), but aside from that I spend the entire day sat on my backside!  I’m not going to get any of the video shot today, so that takes care of tomorrow morning.

I light the fire to take the chill off the house (even though we won’t be needing it this evening), vacuum downstairs and put the dishwasher on – I’m a proper little domestic God, aren’t I?  Then I just have time to feed the dog and get myself over to Hevingham to join the rest of the family.

Today I am taking my son and his girlfriend over to Stalham to visit my mother and brother.  I also need to call into the boatyard at Wayford Bridge to check on my boat, start and run the engine for a short while and also to collect the container of linseed oil that we left there when we last stayed on the boat and were oiling some of the external woodwork.  I need to oil the kitchen worktops at home – they haven’t been done for ages and are starting to look a little bit dried out!  I haven’t been to see my mum since Christmas Day, and I am feeling a bit guilty about that, even though I have an excuse (both my wife and I have been unwell since New Year with the usual seasonal bugs that are going around).  We really haven’t been anywhere (sociably) for a while, so it will do me good to be getting out of the house.

I prepare a breakfast of beans on toast for my son and sausages (yes, just sausages) for his girlfriend, take the dog for a walk, and then we are ready to go out.

My mother is pleased to see us, and seems quite well (she has advanced Parkinson’s Disease) although it is a struggle (as usual) to hear her because her voice is so weak.  We sit and chat to my brother, and my mother just sits and listens – it is really difficult for her to join in conversationally, and I really feel for her.  I asked the Parkinson’s nurse to refer her to the speech therapist almost 6 months ago, and nothing seems to be happening – time for me to chase things up, I think.

We call into the boatyard at Wayford Bridge on our way back to Southrepps.  The boat engine is reluctant to start (probably because it hasn’t been started for about 6 months) but it eventually splutters into life.  I intended to run it for half an hour to put some juice into the starting battery, but for some reason (probably damp) the alternator wasn’t charging.  I did some expert wire wiggling, but all of the wires appeared to be attached where they should be…  I will have to return and sort this out.  I do have a solar panel that trickle charges the starting battery, but I still worry that the bilge pump will flatten the battery and then we really will have a problem (because the boat will eventually sink).

We are halfway home when I realise that I forgot to pick up the linseed oil – that will ensure that I return sooner rather than later to sort out the battery charging problem.

We get back home in time for the dog’s afternoon walk – she chases a ball around the field with one of her doggie chums, while I admire the beautiful sunset.

I get up at 8am, intending to get the routine tasks out of the way before my son and his girlfriend show their faces.  My wife gets herself off to work, and I deal with a bunch of emails that have been sitting in my inbox for a day or two.

My son comes downstairs a little after 10am – his girlfriend snoozes on.  I make us some bacon sandwiches for breakfast when she surfaces just before 12pm, and then we settle down in front of the TV to watch season 3 of Sherlock (which we have all seen before, but we need our memories refreshing).

We take a break from slobbing out, take the dog for a walk and get a basket of logs in for later on.  I remember to order some more logs, but it looks like we will run out before the next load is delivered – our log man is moving house this week, so deliveries are on hold until next week.  Oh well, we won’t freeze – we have the central heating to fall back on, especially since we had some more Calor gas delivered today.

Tremor is not as good today – breaking through on the left side (leg), but everything else seems to be much the same as yesterday.  I’m still getting over “the Queen’s Cough” bug, but it’s no big deal.

My wife arrives home and prepares a meal for the 4 of us, and knocks up a cracking lemon cheesecake for dessert – she’s a proper diamond, my missus!  I light the fire and select something amusing on Netflix for us to watch this evening.

My son and his girlfriend are travelling up from Dorset this evening to stay with us for a couple of days, so my wife wants to make sure that the house is spick-and-span.  We also need to visit the garden centre in Overstrand to get the dog’s food (the garden centre has the best price for the brand of dog food that we buy), remembering to go there while they are actually open (we went there yesterday, but 10 minutes after they had closed!).

First things first! Tea, Nutriblast, dog walk.

I split the rest of our supply of logs, fill the log basket, and cover the rest over with a tarpaulin to keep them dry – it looks like there’s about enough wood to last us until the middle of the week, so I’d better make sure I order some more tomorrow.

The spare room is also our store room, so I need to clear some floorspace so that my son and his girlfriend can actually get to the bed (which is stacked up with boxes, too).  I move my camera, tripod, and various bags of camera equipment into a corner of our bedroom, and shift the laser printer onto the top of a chest of drawers (it usually lives on the floor of the spare room).  It’s looking more like a bedroom already.  My wife moves the rest of the boxes (some into our bedroom, some into the loft), and I make the bed.  Job done!

We go to the garden centre before it gets too late, buy the dog food, a large terracotta planter for the back garden and a couple of plant pot holders for indoors.   When we get back home, I light the fire while my wife vacuums, mops floors, cleans the bathroom and prepares our dinner – seems like a fair division of labour to me!

Tremor is really well controlled today.  Dystonia is ok.  Dyskinesia is passable.  Balance is rubbish.  Voice is okay.  Mood, motivation, energy – all okay.

We eat dinner, pour a beer and await the arrival of our guests.

We awake to a world of slush.   It has snowed overnight, but the temperature is too warm for it to remain as snow, so now it’s just a grey, wet, slushy mess.

My wife takes the dog for a good long walk, while I drink the tea and Nutriblast that she has made for me.  My son and his girlfriend are coming to stay for a couple of days, arriving tomorrow night, and my wife wants to make sure that we have enough food and drink in the house, so today we are going shopping again.

We drive to North Walsham and do a grocery shop in Lidl, followed by a (much) smaller grocery shop in Sainsbury’s (who are so much more expensive).  We then drive to a garden centre in Overstrand to buy a sack of food for the dog, and some seed trays so that I can make a start on growing some vegetable seedlings to be planted out on the allotment this Spring – unfortunately, we have taken so long to do the grocery shopping that the garden centre has closed for the day – try again tomorrow!

Now that tremor, dystonia and dyskinesia are more under control. I have noticed that rigidity is becoming more of a problem these days – I struggle to get up from a seated position, and when I go to sit down, I only have control for the initiation process.  I end up falling the rest of the way. Falling back onto the sofa at home isn’t really a problem, but falling into the passenger seat of my wife’s car is a bit hit and miss – and today I managed to bang my head on the way in… not recommended!  I’m not sure if it is more of a problem because Parkinson’s is progressing, or if it’s that I notice it more because I’m less bothered by tremor, dystonia and dyskinesia.  A question to ask the team at the NHNN next time I go there for device programming.

Back home, I get the logs in, vacuum downstairs and then light the fire, while my wife sorts the rest of the house out, does the laundry and prepares our dinner.  Then we settle down in front of the fire (and TV) to watch a movie and drink a beer.

I’m definitely having a little more trouble in getting off to sleep just lately – even when I have self-medicated with cannabis.  I do hope this isn’t the beginning of disrupted sleep patterns.  I woke at 3am and 4am but got straight back to sleep.  My alarm went off at 7am, but I didn’t get up until 8am.

I take the dog for an early walk – I have to drop my wife off at work this morning (her car has been in for repair) and have decided to pop into Asda in Norwich to stock up on beer (my son and his girlfriend are coming down for a couple of days).  I need to get back at a reasonable time to finish scripting my weekly vlog, then film, edit and publish the video!

It starts to snow as we are on our way to my wife’s workshop in Hevingham, and it continues to chuck it down all the way into Norwich.  When I come out of Asda, my car is completely covered in snow, and I get very cold and wet just putting my purchases in the boot.  The entire car park is a skating rink, and it’s chaos!  Everybody is just slipping and sliding, and it takes me nearly half an hour just to get out of the car park.  I return to Southrepps doing a stately 20mph most of the way.  The temperature in Southrepps is about 1 degree Celcius above the temperature in Norwich, and the snow has melted, which I’m most grateful for.  I get the shopping in, and then get started on my vlog.

I break for 15 minutes to take the dog for her afternoon walk and get some logs in, then I light the fire and finish editing my video.  By the time my wife gets home I have published my vlog, popped a top on a bottle of beer, and am relaxing on the sofa.  Tremor has been better (again) today, as has dystonia.  Balance is worse, and my wife gets quite alarmed at one of my near misses this evening – luckily there’s a chair in the way to break my fall.  My voice seems weaker as well, but perhaps that’s just because it is getting more use than normal because I’m filming my vlog…

Time to watch a movie on Netflix, and then we can try to get an early (ish) night.