Month: March 2017

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!