2017-02-28 – Tweeting about Parkinson’s.

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

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

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

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

017-02-27 – Travelling back home.

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

Buxton viaduct
Buxton viaduct

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

Victoria Prospect Tower
Victoria Prospect Tower

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

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

Stone bridge
Stone bridge


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


2017-02-26 – Off to Derbyshire.

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

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

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

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

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

017-02-25 – The baby shower.

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

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

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

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

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

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

2017-02-24 – A motivational vlog.

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

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

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

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

2017-02-23 – Going to a gig.

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

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

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

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

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

2017-02-22 – Editing video.

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

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

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

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

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

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

2017-02-21 – More positive today!

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

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

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

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

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

2017-02-20 – A list of tasks

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

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

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

I pay my (overdue) water bill.

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

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

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

2017-02-19 – Motivating myself.

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

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

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

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

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

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

2017-02-18 – Finding a bath.

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

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

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

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

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

2017-02-17 – A disruptive grandchild.

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

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

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

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

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

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

2017-02-16 – Frustrated by my voice.

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

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

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

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

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

2017-02-15 – More planning than doing.

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

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

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

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

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

2017-02-14 – Shaking for the camera.

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

Okay, I’m ready for Valentine’s Day.

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

DBS off and DBS on - drawing a freehand straight line
DBS off and DBS on – drawing a freehand straight line

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

DBS off and DBS on - drawing a freehand spiral
DBS off and DBS on – drawing a freehand spiral
DBS off and DBS on signature
DBS off and DBS on signature

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

DBS off and DBS on handwriting
DBS off and DBS on handwriting

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

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

2017-02-13 – Confined to Southrepps.

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

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

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

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

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

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

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

2017-01-12 – Feeling unsociable

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

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

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

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

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

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

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



2017-01-11 – The God Plant

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

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

Lights, camera, action!
Lights, camera, action!

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

Me and the film crew
Me and the film crew

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

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

2017-02-10 – Another vlog

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

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

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

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

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

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

2017-02-09 – Keeping warm.

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

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

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

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

2017-02-08 – A day of recovery

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

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

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

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

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

An early night is a must, tonight.

207-02-07 – Saying goodbye.

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

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

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

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

2017-02-06 – Careless idiot!

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

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

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

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

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

2017-02-05 – Visitors!

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

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

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

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

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

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

2017-02-04 – Hospital visit.

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

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

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

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

2017-02-03 – Meeting the neighbours

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

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

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

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

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

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

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

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

2017-02-02 – Writing scripts.

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

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

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

2017-02-01 – Just sitting around…

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

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

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

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