Month: April 2017

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.