Author: Ian

I slept a little better last night, only waking once (at 5.30am) but going straight back to sleep until my wife’s alarm went off at 8am.  She is feeling a lot better this morning, and has decided she is well enough to go to work today.  Not really sure what I am going to do today – I have a few things written down on my list of tasks, so I’ll probably spend some time just catching up with stuff.

It is forecast to snow today, so I take the dog for a walk while it’s still dry out there.  It’s chilly but not freezing cold – doesn’t feel cold enough to snow.

• I have still got a load of video files to send to the Cleveland Cannabis College, so I copy some more into my DropBox folder, and then send an email to my contact there.  Only another 2.5Gb of video files to go – it’d be nice to get them out of the way before the weekend.
• I order 2 bottles of Calor gas, and get the empties out of the gas bottle enclosure, ready for collection.
• I photograph my proof of No Claims Discount, and email it to my car insurance company.
• I bring logs in from the back garden and fill the log basket by the woodburner.  I lay the fire and consider lighting it, but resist the temptation – it’s really not that cold.  Still no snow, but it is now raining steadily and the sky is leaden with cloud.  Hopefully it’ll stop for a while – I hate dog walking in the rain, and the dog isn’t too keen on it either!

My cold has pretty much gone now – I’m still sniffling and coughing, but feeling a lot better.  Tremor control and dystonia have improved as well.  My balance and walking are reasonably okay at the moment – not perfect, but okay.  My voice seems to be a little stronger, too –  I’m not strangling the end of my sentences at the moment.

I get lucky with the weather – it stops raining just before 4pm, so the dog and I dash out for a leg stretch and manage to return home just as the heavens are opening again.  Time to light the fire!

My wife is ill.  I had a really bad night’s sleep, probably because my wife is ill.  I had terrible trouble getting off to sleep last night (even though I self-medicated with cannabis), and seemed to be awake for most of the night.  This morning my wife told me that she has the sickness bug that is going around, and has been up half of the night being sick.  I never heard her, so I guess I just woke up when she got in or out of bed, which is why I thought I’d been awake for most of the night.

I get up and leave my wife in bed.  I make a pot of tea (my wife’s feeling too unwell to even have a cup of coffee), feed the dog and think about lighting the fire.  I don’t light the fire, however, because there are only a couple of logs in the log basket and I can’t be bothered to get some more in from the garden.  I take the dog for a walk instead.

I’m still under the weather.  The cough hasn’t really got any worse, and the sore throat is almost gone, but my nose is still running like a tap, and my head feels like it’s going to explode.  Tremor is being a proper nuisance today, and dystonia in my right foot is playing up a little, too.  Dyskinesia is no worse, balance is fair, walking isn’t too bad, mood and motivation are okay, energy is low.

The weather forecast for the rest of the week isn’t great – it’s supposed to be getting colder tonight and tomorrow, and we are expecting snow by the weekend.  I decide to split enough logs to last us a few days because I really don’t want to be doing it when it’s freezing cold and snowy (if the weather forecast is correct).

I’m awake at a tad after 5.30am and can’t get back to sleep.  I lie awake until 7.30 and then decide to get up.  I have an online interview scheduled for this afternoon with Karl Sterling from New York, who runs Parkinson’s Regeneration Training programs.  I haven’t finished preparing the answers to the interview questions that Karl emailed to me, so I really feel a pressing need to pull my finger out and get on with it.  I’ve still got the dreaded lurgy – my nose is streaming and I’m wheezing and coughing.  I obviously have the bug going around that is being referred to as “the Queen’s cough” (because Her Majesty has been ill with it for the last week or so).

Downstairs, tea, Nutriblast, paracetamol, Strepsil – soon I’m feeling about halfway human…  I light the fire at 9.30am because I’m feeling cold – I know the house isn’t cold, so it must be because I’m feeling weak, infected and pathetic.  I walk the dog, listen to PopMaster, and then I’m ready to do some work.

I prepare a comprehensive script for this afternoon’s interview (which is about Parkinson’s Disease, DBS and exercise), and then have sufficient time to split a load of logs and fill the log basket.

The interview gets off to a bit of a bum start because my MacBook is too old to run the videoconferencing software the Karl uses, and the iPhone version (which I do have installed) doesn’t allow him to record the video.  We decide to do an “audio only” interview, which goes very well.  I feel happy with the content, and so does Karl, so that’s good!  My tremor (which was well controlled beforehand) is coming through quite strongly all over my body by the time we are finished – the result of being in a stressful situation, I think.  I dread to think how bad I would have been if I hadn’t prepared my answers.  Tremor is the only symptom that appears to be affected though.  Luckily my voice is quite strong today, and I didn’t feel that I was struggling with it at all (and we were talking for almost an hour).

Just time for the afternoon dog walk before it gets dark – it’s another grey day, but at least it isn’t raining.  More paracetamol.  I slump on the sofa in front of the fire, self-medicate with cannabis and await the return of my wife from work.

I wake at a shade before 7am feeling very rough.  My sore throat has almost disappeared, but has been replaced by a rather nasty chesty cough.  I can’r get back to sleep, so I get up just after 8am.  I have lots of aches and pains when I move around – I feel as though I’ve had a good kicking!

My wife offers to take the dog out before she goes to work, but I decline – I really do need to get out of the house more!  I walk the dog, and get back indoors as quickly as practical.  I bring in a load of logs and light the fire – I’m not going to be straying too far from my seat by the fire today.

I am being interviewed by someone in New York that runs Parkinson’s Regeneration Training programs tomorrow.  He has sent me a list of questions that we can use as a starting point, so I want to make some notes prior to the actual interview – I find that I have difficulty thinking on my feet these days, my brain doesn’t work the way that it used to.  If I don’t have something prepared, I know that there’s a good chance that he’ll ask me a question and my mind will be a complete blank, which won’t be good!

It’s a grey and wet afternoon in Southrepps, and the dog wants me to take her out – so I put my coat on and take her for a quick walk.  I’m not in the mood for throwing the ball in the rain, so as soon as she’s done her business we head back home to the warmth of the fire.

I wake up this morning with full blown man ‘flu – eyes that feel like pickled onions, nose running like a tap and a voice reminiscent of Barry White.  I woke just before 7am, and attempted to go back to sleep.  At 8.15am I gave up trying, got up, got dressed and went downstairs to give the dog her breakfast.

I feel like death warmed-up, so am very grateful to my wife, who takes over dog walking duties today.  I get a large load of logs in from the back garden, light the fire and prepare to slob around on the sofa for the day.  I seem to be getting a lot of practice at slobbing around just lately, and I’m getting very good at it (if I say so myself).  Tremor is breaking through quite a bit today (left leg and right arm), but I’m assuming that’s because I’m a bit under the weather.  I can feel my nose getting more and more sore as the day goes on due to the fact that I’m blowing it every 2 minutes.  I drink hot lemon and honey (made for me by my wonderful wife) and work my way through the packet of Strepsils lozenges that my wife came home with last night – I think she must have known that I was going to be suffering today.

It’s Cromer Firework display this evening – it was originally scheduled for New Year’s Day, but was postponed due to adverse weather conditions.  We would normally go along to watch, but I’m not feeling like standing around in the cold with thousands of other people milling around, so we are giving it a miss.  I’m sure we will be able to see (or at least hear) some of the display from our back garden if we get the urge.  Me?  I don’t really feel the urge – I’m quite happy to stay in the house by the fire.

I had a good night’s sleep, only waking (briefly) at 2.30am and 7.30am.  I allowed myself a little lie-in, and got up just before 9.30am.  I have stopped reducing my Group “A” voltages when I go to bed.  I started to get restless legs on the reduced stimulation, and that is most unpleasant.  Instead, I swap over to Group “B” settings for the night, and back to Group “A” settings during the day – seems to work just fine.  My wife is spending the day at her youngest son’s house today, so it’ll be a quiet one here in Southrepps.  I don’t really feel motivated to do anything at all today, so I spend the day not doing much at all.  Apathy?  Perhaps.

I do take the dog for her two walks today – it wouldn’t be fair not to, and she does ask me so very nicely.  I also spend a little time wielding the log splitting axe in the back garden – I quite enjoy splitting a few logs when I have the energy.  I have a really painful right elbow today, though, and splitting logs isn’t making it any better, so I don’t push my luck.  I carry the freshly split logs into the house, and fill the log basket in the fireplace.  Then I vacuum downstairs (most of the mess was made by me, carrying in the logs), clean the fireplace and lay the fire ready to light a little later on.  Tremor does break through on a couple of occasions (right hand), but does seem a little better than the past day or two.  I haven’t really used my voice today (other than to talk to the dog) so not sure how weak it is – I do know that it’s not strong, though!  I still have a sore throat and slightly bunged up nose – I do wish it would go away.  I thought I might have disinfected my throat with the malt whisky I had yesterday – I obviously didn’t drink enough of it.  I’ll try a slightly larger dose shortly!  Balance, walking, dystonia, dyskinesia all pretty much unchanged.  Mood and motivation – not great.  Energy – so-so.

I light the fire around 6pm.  My wife hasn’t returned home yet, so I sit on the sofa, turn on the television and select a movie to watch on Netflix.

My wife approved my script for this week’s vlog, which is an emotional vlog – principally about her grandma nearing the end of her life – so I start getting the camera, tripod and other ancillary equipment set-up as soon as I am dressed and downstairs.  I drink my tea and Nutriblast which my wife has prepared before leaving for work, and set about loading the script into the teleprompter app on my iPad.

I have a number of unsuccessful takes before I have enough material for my vlog – I keep getting a lump in my throat and choking up when I’m trying to get the words out.  When I have imported all of the footage onto my MacBook, I take a break before starting work on the editing.  I go into our back garden and split enough logs to last us a couple of days, then take a basketful into the house for the fire tonight.  When I have finished that task, the dog is reminding me that it’s about time I threw her ball for her, so I take her for a walk and throw the ball for her.

My walking isn’t too stilted today, but I think my balance is worse than  it was yesterday.  Dystonia and dyskinesia appear to be unchanged, but tremor is breaking through badly (from time to time) on both sides which makes editing my vlog a bit of a challenge.  No adjustments to my device at the moment – I think my symptoms have been a bit up and down this week, probably as a result of late nights and a couple of long days.  I think I need to get back into my usual routine and see if things settle down a bit.

I light the fire, finish editing my vlog, and upload it to my YouTube Channel.  My wife, who is running very late, calls to tell me she is on her way home, so I prepare dinner so that all we have to do is turn the hob on when she walks through the door.  An early night is what the doctor ordered, but it’s gone 8.30pm and we still haven’t eaten, so that’s not going to happen!  My sore throat is still hanging about, so I treat it to a little single malt whisky (neat – I like to be tidy when I drink) while I await the appearance of my wife.

I have a little more energy today, and my tremor, dystonia and dyskinesia are all back under control again.  I self-medicated with cannabis last night, so I slept soundly and recharged my batteries.  My sore throat is still around, but no worse than yesterday – I give it the “gargle with mouthwash” treatment, and it feels a little less raw.

Back to my usual routine…  Tea, Nutriblast, PopMaster and dog walk, and then I check (and respond to) my email, and start to think about a script for my weekly vlog.   I have decided to talk about my wife’s grandma, so I need to give it some careful thought.  I don’t want to be morbid or depressing, and I don’t want to upset any of the family if they should view it.  I also don’t want to hold back on what I want to say, so I’ll get my wife to read my script and (hopefully) approve it when she gets home from work tonight.

I need to give myself some maintenance.  My hair is sticking up in a variety of places, and is well overdue for a trim.  My stubble is fast becoming a beard.  My eyebrows are becoming so overgrown that I’m beginning to resemble Denis Healey.  So, I grab the trimmers, razor and shaving gel, and retire to the bathroom for a while, tidying myself up.  When I emerge, I have a grade 1 buzzcut and am clean shaven (no bloodshed!) – my wife won’t recognise me!

I split some logs and fill the log basket for tonight’s fire, then take the dog for her afternoon “chasing the ball” session.  My balance and walking seem much improved today as well, and I’m feeling much more motivated – it’s amazing what a good night’s sleep will do.

I am going to self-medicate with a little cannabis again tonight – it really helps me to get off to sleep (and stay asleep).

I wake at 8am with a sore throat – just what I needed!  It hurts to swallow.  When I get up (an hour later) I try gargling with a little mouthwash – it stings like crazy, but does seem to anaesthetise my throat a little.  I’m feeling a little fragile this morning!

My wife goes off to work.  It seems strange to be home without our dog (my wife will bring her back this evening) but I’m glad to be able to stay indoors today.  I’m very tired, and my muscles are aching (probably from being immobile for so long yesterday), so I decide to do a couple of pressing jobs (renew my car insurance, which expires at midday today, and contact my dentist about a prescription for the antibiotic that I require before he extracts a broken molar).   I could do with giving myself a haircut, but I’m going to postpone that until tomorrow.  I bring in a basketful of logs from the back garden, light the fire and sit on the sofa warming my lazy bones.

Symptoms have the upper hand today, presumably because of travelling all the way to Basingstoke and back, and having another very late night.  Tremor is being a nuisance at times, I ache all over and I feel completely exhausted – very little in the way of energy.  Balance is a touch on the erratic side, and I don’t feel motivated to do anything apart from sit on the sofa.  An early night is on the cards – hopefully I’ll feel better tomorrow.

My wife’s grandma is in the wars.

She turned 100 years old last year, and has dementia.  She was admitted to hospital with a broken hip a few weeks ago, having had a fall at home.  She seemed to be recovering well from the surgery, but was then re-admitted with an infection.

We heard the other day that the hospital had withdrawn antibiotics because they were not having any effect, and were now medicating her with morphine to “make her comfortable”.  My wife is very close to her grandma, and is (understandably) distressed at the way things have turned out.  Even though there is a good chance that her grandma won’t recognise her, my wife wants to visit her, so we prepare to drive the 190 miles to Basingstoke and North Hampshire Hospital.

We drop our dog off at my wife’s youngest son’s house en-route, fill the tank with fuel, and hit the road.  4 hours later, we are there.

We spend almost 4 hours with my wife’s grandma – my wife talking to her, telling her how much she is loved, reminiscing with her.  Amazingly, she responds to her and seems to be aware that her granddaughter is talking to her, and my wife (although tearful and emotional) gained some comfort from this.

The roads are quiet on the trip back home, and we make good time – only stopping at McDonald’s for refreshments and the petrol station to re-fuel the car – arriving back at Southrepps around half past midnight.

I have had a pretty good day, symptom-wise.  The travelling has tired me out, but tremor, dystonia, dyskinesia, balance are all shunted to the back of my mind.  My voice is weak and strangled, but that’s par for the course at the moment.

Today is a brighter day, at least to start off with.  By dog walking time, it’s looking a little bit grey, and by the time my wife returns (having walked the dog) it is raining.

We decide to go out to the sales – I’m desperately in need of a new coat, and I do hate paying full price for anything!  Before we go, I spend half an hour in the back garden, splitting logs for the fire this evening (or this afternoon! It’s a much colder day today).

My tremor is breaking through (both sides) again, my dyskinesia seems a little worse, and my voice is still not sounding very much like my voice any more.  On the plus side, dystonia is still bearable, my balance is a little bit improved, as is my walking.  Motivation seems to be improved also.  I didn’t have any trouble getting out of the house to go clothes shopping – not one of my favourite tasks at the best of times.

We drive to Roy’s in Wroxham and I can’t find anything that I want to buy, so we journey on to Tesco in Sprowston where I manage to buy a decent coat for almost half of the ticket price.  So, I’m happy because I got a bargain, and my wife’s happy because now she can throw away my old coat!

Home, light the fire, feast on more leftovers, watch another movie on Netflix.  Day done!

We ended up having an extremely late night last night.  We watched a movie on Netflix until gone midnight, and then my wife cracked open a bottle of Prosecco…  It was 2.30 before we stumbled upstairs to bed, so it was correspondingly late when we got out of bed (10.30am!).

My wife took the dog out this morning, and for that I am very grateful – it’s a horrible grey morning here in Southrepps and it is tipping down with rain – a very wet new year!

I have decided that I’m not straying far from the sofa today.  I do, however, brave the miserable weather to split some logs in the garden, and fill the log basket in preparation for lighting the fire a little later on.  I struggle a little with energy and balance when I’m swinging the log splitting axe, so I split just enough logs to be going on with and don’t push my luck.  My voice is weak again today, so my theory that it depends on how much I talk as to how weak my voice gets, seems to be blown out of the water – I haven’t done a whole lot of talking today.  Tremor is breaking through a little on both sides today – perhaps because of our late night and my current fatigue – but it is manageable,

It isn’t cold outside, and our little cottage is quite warm and snug, but I light the fire just after 1pm in any case – I like to have a fire blazing away in the woodburner, it makes me feel warm just to look at it.  I spend some time analysing the viewing figures on each of my YouTube videos, seeing which ones are most popular and considering where  my efforts would be best employed in the future.

After a very early dinner of leftovers, we settle down for the evening in front of the fire with a beer and Netflix.

Another year draws to a close, and I have mixed feelings about 2016.  It has been a real mixed bag.

On the one hand, it is the year that I had my deep brain stimulation operation – something that has immeasurably changed my life for the better.

On the other hand, it seems that scarcely a week went by without another death in the world of music and entertainment – the 2016 body count is phenomenal!

Then there was the referendum, the result of which has shaken our country to the core – whichever way you voted, the outcome was still a shock.  It remains to be seen how quickly we manage to pick ourselves up and dust ourselves off – there is no doubt in my mind that we will do so, it’s just a question of how long it takes.

The U.S. Presidential election – another shocker, but, once again, the people have spoken.  In 2017 we shall see how right (or wrong) we were about Donald Trump – I sincerely hope that we were wrong, that he doesn’t prove to be the loose cannon that everybody says that he is.

Terrorist attacks galore, in every corner of the world.  Man’s inhumanity to man depresses me, quite frankly.  I have no idea what the answer is, I just hope that there is an answer.

Tonight we will be seeing the New Year in at home.  A quiet affair with just my wife’s sons and their fiancees, our granddaughter, a couple of beers, a little music (perhaps).

Happy New Year – I wish you all the very best in 2017!

It’s Friday again, and it’s crept up on me (again).  I need to publish my weekly vlog today, and I really haven’t given a lot of thought to it this week.  What’s it going to be about?  My life is so boring, nobody can possibly be interested in hearing about it, and yet over 300 people have watched last week’s vlog.  I’ll continue for a little while yet and see how it goes.

I decide on a subject (DBS and the dentist) and set about writing a script for the video.  Once I’ve decided what to write about, the words come fairly easily, and by lunchtime I’m about ready to start filming.

I load my script into the teleprompter app on my iPad and have a couple of dry runs to get my timing right, and then switch the camera on.  I really needed the filming to go without a hitch, because my wife and I are babysitting our granddaughter tonight, and I wanted to publish the video before we go out.  As usual, when you want something to go smoothly, it doesn’t – I fluff my lines so many times, it’s beyond a joke.  Finally I think I have enough material for the edit, and I take a break to walk the dog before it gets dark.

My walking is still a little wooden, but nowhere near as bad as it has been for the last couple of days.  My voice is still quite weak, and the main reason for having so many takes when I’m filming my vlog is because my voice ends up sounding strangled – if I consciously think about my breathing and don’t rush, then it definitely gets a little better.

By the time my wife calls me to say she’s on her way home, I have just about finished editing my vlog.  By the time dinner is on the table, the editing is finished and I’m uploading the video to my YouTube Channel.

I slept well (again) last night, and didn’t get up until well after 9am.  The world outside our window is sparkling frosty white this morning – my car looks to be completely encased in ice.  I hope the temperature rises a little bit later on – I want to wash my car today (I haven’t done so since before I was in hospital in April).

The ground is frozen hard underfoot when I take the dog for her morning walk, and my toes are completely numb inside my wellies – it’s bloody freezing!

Eventually the sun defrosts the car, and I venture out armed with a bucket of warm soapy water and a sheepskin mitt to do battle with the generous quantity of bird muck that coats it’s paintwork.

The frost (and it’s subsequent melting) has softened the bird muck, so it actually washes off really easily, and it doesn’t take me too long to do.  I’m struggling a little with shortness of breath and muscular stiffness today, and it makes the task a tad more difficult than it usually is.  At least tremor is (mainly) under control.  Dyskinesia and dystonia are fairly stable.  My walking is atrocious at the moment (more of a stumble than a walk), but at least I am still managing to stay upright.  My voice is still not very strong, but it is better than it was yesterday.  Motivation is still improved compared to last week, so I’m pleased about that.

We have to go to Hevingham to give my wife’s ex-husband’s girlfriend her birthday present (what a rubbish time to have a birthday!) and to collect some fabric samples to show to one of her customers tomorrow morning.  When we get back home, the day is pretty much over – it’s dark and everything is getting iced up again.  My wife prepares a dinner of Christmas leftovers while I light the fire, and we select yet another Netflix movie for the evening’s entertainment.

My wife’s family are scheduled to visit us for nibbles and drinks this afternoon, so we are making sure that the house is in a fit state for visitors.  My wife is vacuuming and dusting like a thing possessed, so I take the dog for a walk – she doesn’t like the vacuum cleaner…

When I get back, I organise the logs and woodburner, making sure that the fire is lit, but just ticking over – it can get a bit oppressive with a house full of people if it is really blazing.

My walking isn’t good today and my voice is really strained, so I’m not looking forward to lots of conversation.  Tremor is okay.  Mood is okay. Motivation seems a little better than yesterday.  Everything else is pretty much unchanged.

Our guests arrive (5 adults and 2 children) and I busy myself serving drinks while my wife is warming sausage rolls and mince pies in the oven.  We spend a pleasant afternoon eating, drinking, opening Christmas presents and chatting.  My voice does give up on several occasions, but it’s not too embarrassing.

At long last, we have the house to ourselves again, so we clear up, put the dishwasher on, pour (another) beer and select another movie to watch on Netflix.

I slept like a log last night – no cannabis required!

We are having my wife’s family over for nibbles and drinks tomorrow afternoon, so we need to go and buy some food!  We go to Lidl and Sainsbury’s in North Walsham and purchase the necessary.

While my wife is making sausage rolls, I get the logs in from the garden, light the fire and settle down on the sofa to watch a thriller on Netflix.

I am still in discomfort with my shoulder where I fell onto the sofa the other night.  I thought it would be feeling better by now, but I’m still wincing every time I stretch out my right arm.  If it doesn’t improve this week, I suppose I’ll have to go to see the doctor.  I still have this strange sensation in my right hip – it’s a little bit like pins and needles, and a little bit like the vibration that my iphone makes when it receives a call, in pulses about every 5 or 10 seconds.  It’s not uncomfortable, but it is quite annoying.  My tremor is only just under control, but it is under control.   Dystonia and dyskinesia are both still hanging around, but neither of them is too much of a problem.  My mood is okay, but I know that my motivation us suffering a little bit at the moment.  My energy levels are on the low side, too.

After we have had some dinner, my wife and I pick another thriller to watch on Netflix, and pour a couple of beers.  I’m really glad to be home.

Boxing day!  I had another bad night, in spite of self-medicating with cannabis when we went to bed last night.  I put it down to being in a strange bed with a heavy quilt on it, meaning that I woke many times in the night, uncomfortable and overheated.

We get up and go downstairs after an extended lie in.  Neither of us can face breakfast because we are still digesting Christmas dinner, but we manage some tea/coffee.

A day of lazing around ensues, punctuated with unnecessary food, too many chocolates and a couple of beers.  We spend a good portion of time watching Carpool Karaoke on YouTube, which is highly amusing, and round off the afternoon with the Absolutely Fabulous movie, which is quite entertaining (but which could possibly have been funnier if we had been able to get either the subtitles or my ears to work).

I find that my hearing has deteriorated to the point where I could use a hearing aid – either from going to too many gigs, general old age creeping up on me, or as a symptom of my Parkinson’s Disease.  I don’t know which of these it is, and nobody else seems to know either – probably a bit of all three!

After the movie, my wife and I gather up our belongings, gifts and dog, and return to our little cottage in Southrepps.  In no time at all we have a fire blazing in the woodburner, a film playing on Netflix and a couple of beers poured – a suitably lethargic end to a generally lethargic day.

Merry Christmas!

We stayed at my wife’s youngest son’s house last night, and I’m definitely missing being in my own (very comfortable) bed. I didn’t have a particularly good nights sleep and was awake well before we got up at 6.45am.

We are all round at my wife’s eldest son’s by 7.30am, opening presents and scoffing bacon baguettes before certain family members are due to be at work.

Then we are off to Stalham to see my mother and my brother and his family before getting back to Hevingham so that my wife can supervise the cooking of the Christmas dinner.

I’m feeling particularly knackered today, so I make myself comfortable on the sofa and spend a happy hour or three watching MTV and drinking KingGoblin whilst everyone else is slaving away in the kitchen.

I manage (just) to avoid falling asleep on the sofa, but it is a battle, and not related in the slightest to consumption of alcohol.

Dinner is eventually served just after 7pm and we all eat more than is strictly advisable.

I think I’m having some motivation issues again.  I’m unsure if it’s just because I’m feeling so tired, but I really can’t be bothered at the moment. If it wasn’t for my wife and her family, I’d be perfectly content to shut myself away at home, sit in front of the fire and wait until the festive season is well and truly over.  I’m going to self-medicate (cannabis) before I go to bed tonight.  Hopefully I’ll get a better night’s sleep, and wake up with a more positive attitude tomorrow!

My wife didn’t get home from work until almost midnight last night, so it was about 1am before we got into bed.  My wife was up at 6.30am, wrapping presents.  I dozed until my alarm went off at 7am.  I have to drive to Sprowston this morning to pick up my wife’s present – not really what I want to be doing on the last shopping day before Christmas, especially not when I’m shattered before I start!

My wife is going to her customer’s house to fit the loose cover that she finished making last night, so I take the dog for a quick walk and then head off to Sprowston.

Amazingly the traffic on the roads is relatively light, so driving isn’t too stressful.  I collect my wife’s gift, and then pop into Tesco to buy some chocolates, some milk and some KingGoblin (well, it is only Christmas once a year..).

The trip home is similarly uneventful, and I wrap the chocs and my wife’s present.  We are going to Hevingham tonight – having dinner with my wife’s eldest son, his fiancee and our granddaughter, and then going next door to stay with my wife’s youngest son and his fiancee until Boxing Day.  So, there really isn’t any need to bring logs in today, but I do so in any case – one less thing to worry about on Boxing Day!

I am experiencing a most disconcerting sensation at the moment.  It feels as if I have my phone in my pocket, switched to “silent”, and it keeps going off at 10 second intervals – only my phone is on the table beside me.  I would be inclined to think it was related to my DBS if I hadn’t had this happen before I had the operation (on several occasions).  I’m concerned that it (perhaps) heralds more disease progression – we will just have to wait and see.

Someone posted a link on my YouTube channel to a news item about Mannitol.  It is a product used by the food industry which (allegedly) reverses some of the symptoms of Parkinson’s Disease – I go online and order a kilo of the powder.  Anything is worth a try!

I have a bit of a lie-in this morning.  I heard my wife get up (much) earlier, but went back to sleep.  When I do wake up, it’s almost 9am, and my wife is just about to leave for work.  It’s okay, though, because it’s only Thursday today – plenty of time to do what I need to get done before the big day.  I decide to do some scripting for this week’s vlog, because I’m aware that I need to publish it this Friday, and I think Friday is going to be a busy day – the more I can get finished today, the happier I will be.

While I’m sitting in the lounge drinking my cup of tea, I hear the bin lorry outside the front door, come to collect the recycling bin.  Strange, I thought…  bin day is usually on a Friday, I wonder why they are a day early?  Must be because it’s Christmas weekend, and Monday and Tuesday next week are bank holidays.  Normally a bank holiday will mean that bins are collected a day or two late, not early – but what the heck, we are in Norfolk!

I listen to PopMaster, and Ken Bruce says he will be back on air next week.  I wonder why he isn’t on air this Friday, but it still doesn’t register that today is Friday!

It’s only when I go to use my iPad, that I see the day and date.  Help!  I’ve lost a day!  I was so convinced that today was Thursday, that it has totally thrown me.

After a few moments of blind panic, I manage to isolate a number of things that have to be done today.  Find a present for my wife (I already promised to have some of her grandmother’s jewellery remodelled into a necklace and bracelet, but I don’t have anything to give her on the day); script, film, edit and publish my vlog (in the grand scheme of things, this isn’t really that important, but I hate having a schedule and not sticking to it!); walk the dog (twice);  get the logs in for the fire;  get the Christmas tree into the house from the back garden so that it can be decorated tomorrow.

I manage to find a present for my wife online and reserve it for collection tomorrow morning – major relief!

Walked the dog (one of two!).

Scripted and filmed my vlog, and imported the video to my MacBook in preparation for editing.

Walked the dog (two of two!).  It’s starting to get dark now (just after 3.30pm) but we manage to have a little game of “Fetch” before it is too dark to see the ball.

Got the logs in (by torchlight – it’s just after 5pm, and pitch black outside) and lit the fire.  I did try to lift the Christmas tree, but failed.  I’m going to wait until my wife is here to help me – the last time I struggled to lift a Christmas tree on my own, I gave myself a hernia.

Edited my vlog, uploaded it to YouTube and published it.  My left leg tremor has re-emerged today, but I think it is due to stress/anxiety rather than the settings of my neurostimulator.  I did take some of the Olimax CBD oil that I decarboxylated several days ago, but it appears to have had absolutely no effect – I’ll self medicate with some cannabis after dinner.

I have just sat down on the sofa, when my wife calls me on FaceTime.  She tells me to get myself some dinner because she is still working, and will be “some time” yet.  It’s 8pm.  I make myself a fish finger sandwich, and then curl up on the sofa with the dog.

I don’t have to do very much in the way of preparing for Christmas.  Not because I’m super-organised and have got everything under control, but because I have a wife who manages to take the pressure off me to sort everything out (putting the pressure on herself, instead).  We are having our Christmas dinner with my wife’s youngest son and his fiancee, so the pressure is well and truly off for that one.  Christmas gifts for all of her family have been taken care of by my wife.  I have already sorted out gifts for my son and daughter (so, I did do something, see!), and just need to get some goodies for my mother, a little something for my brother and his family, and a little something for my wife.

It was with my wife in mind that I decided to take a trip out to the outskirts of Norwich today, and also I wanted to buy some beer and get the ingredients to make some brandy butter and some cheese straws – both of which I volunteered to make and take along to Christmas dinner.

The shopping trip was an utter nightmare.  I thought that by leaving the house at 2pm, the traffic would be light, and I planned on being home by 3.30pm.  How wrong can you be?  It took over an hour each way to make a 20 mile journey, I didn’t find a gift for my wife, and couldn’t get the ingredients for the cheese straws.  Luckily I got the beer and some unsalted butter (for the brandy butter), otherwise the entire day would have been one great big fail!

When I got back home it was dark, so the dog had to make do with a trip down some dark lanes on the end of her lead, rather than chasing a ball across the field.  Poor girl – I’ll have to make it up to her tomorrow.

My voice has been a little better today, but I wonder if that’s because I hardly have to talk to anybody during the day, rather than me thinking that it has deteriorated (due to tiredness) by the time evening rolls around and I’m struggling to converse with my wife.  I only really notice the weakness of my voice when I’m struggling to converse – so if I go through the entire day without having to talk to anyone…  Just a thought.

I had a bit of a disturbed night – my wife didn’t sleep very well, so I was also awake a couple of time around 3am.  She tends to have bad nights when she is stressed about work.

My wife is busy trying to finish the loose cover she is making before she stops work for Christmas, so she has given me a couple of tasks to perform.  Today I need to go to Thorpe Market, Buxton and Aylsham to deliver Christmas presents and cards, and resize a large number of photographs so that they can be printed “contact sheet” style for some Christmas presents she is making for relatives.  I also have a bit of clearing-up to do – I left the kitchen in a bit of a state last night after preparing dinner for my wife’s birthday, so there’s a bit of washing-up and drying to be done!

I’m feeling extremely tired at the moment.  Nothing to do with the amount of sleep I’m getting, I’m sure.  Even though I had a disturbed night last night, I have (generally) had plenty of sleep, so shouldn’t be fighting off sleep during the day.  I have to get up and move around when it strikes, for fear of it overwhelming me.  I have heard of Parkinson’s Disease medication causing this, but I don’t take any prescription meds.  I guess it’s just Parkinson’s, then…  My (other) symptoms are much the same – perhaps we have reached a point where my DBS is taking care of as much of my symptoms as it will do.  Perhaps it could be adjusted to address some of my other issues, such as bradykinesia (slowness of movement) and muscular stiffness/weakness – I’m just wary of doing anything which will compromise tremor control.  Another visit to the DBS programmer in the new year, I think.

I do my routine tasks, and then pop out for an hour or so to deliver the Christmas presents and cards.  When  get back, I sort out the kitchen, light the fire and sit down with my MacBook to resize the photos that my wife wanted me to do.

 

It’s my wife’s birthday today,but we aren’t celebrating it until this evening.  She wants to visit her customer and try fitting the loose cover that she has been working on, and until she has done that, she can’t concentrate on anything else.  So she leaves the house at 9am to visit her customer, and then to go to work at her workshop in Hevingham.

I intended to book a table at The Vernon Arms for dinner this evening, but a quick look at the bank balance makes me think again.  I decide to cook a meal for us instead, so need to go and get some ingredients from Lidl in North Walsham.  I have a vague idea of what I want to cook, so that helps, and I manage to get everything I want without any trouble.

Back home I manage to do some leisurely food preparation, get the logs in for the fire, vacuum downstairs, walk the dog and await the return of my wife.  She is going to be late this evening because she is seeing her sons for her birthday presents before coming home –  it makes no sense to drag them all over to Southrepps just so that I can watch her tear the wrapping paper off her presents!  Her brother is coming over to see her at 8pm, so she is on strict orders to be home for dinner at 7pm – I just hope I can schedule it all.  It’s been a while since I cooked a proper meal.

I had a kind of fall last night – not a proper fall…  I was in the act of sitting down on the sofa, but fell sideways as I was about to make contact with the seat.  There was quite a loud “crack”, and we wondered, at the time, if it was me or the sofa that had made the noise.  Today I’m able to confirm that it was (probably) me – I’m not exactly in pain, but definitely in some discomfort with my right shoulder.  It’s not bad enough to warrant a trip to the doctor, but I shall definitely be taking it a bit easy for a few days.  Tremor remains under control (just), dystonia and dyskinesia haven’t got any worse so I guess I’ll stick with my current settings and see how things go.

I self-medicated with cannabis just before going to bed, so I had another good night of sleep.  Considering how well I have slept for the last 2 or 3 nights, I do have moments of almost overwhelming tiredness, and could easily fall asleep during the day (on occasion) if I didn’t fight it off.

I have quite a lot to do today, so can’t spare the time for daytime naps!  It’s my wife’s birthday tomorrow, and she is extremely difficult to buy for.  I plan to go shopping this afternoon – just to see if I can get some inspiration.

My wife is babysitting for our granddaughter today, so she’s up early and out of the house before I’m properly awake.  I get out of bed just after 8am, adjust my neurostimulator to its daytime voltages, go downstairs, make my morning cuppa and Nutriblast, walk the dog and listen to PopMaster.  With the essentials taken care of, I check my email and my YouTube channel and reply to comments and messages, and then drive to North Walsham to wander around the shops.   Inspiration strikes, and I buy a few bits and bobs and a birthday card!  Once back home, I do some gift wrapping, walk the dog (again) and light the fire.

My tremor has been better controlled today, particularly on the left side, so I think the minor adjustment that I made yesterday has had an effect.  I seem to have a little more dyskinesia in my right arm, which is strange!  Usually dyskinesia on my right hand side is related to the right hand setting on my neurostimulator, which hasn’t been changed for quite some time.  Perhaps it’s just a coincidence, although I’m not a great believer in coincidence – things generally happen for a reason, even if you don’t know what that reason might be.  Dystonia in my right foot doesn’t appear to be any worse, which is a relief.  I feel generally pretty good, but am a little lacking in energy and “get up and go”, so perhaps I should have succumbed to the daytime nap after all…

I slept really well last night (because I self-medicated with cannabis just before going to bed), and slept right through until almost 9am.  My wife had a really good night’s sleep as well, and I put that down to the mug of hot chocolate that I made for her with CBD infused milk.  She says that she couldn’t feel any effects of the CBD, but something is obviously working!

I return my device settings to their daytime voltages, and head downstairs for my tea and Nutriblast (prepared by my wife).  My wife has a tricky job on at the moment – making a loose cover for a bed-settee.  She wants to go to work today, because she wants to get it finished so that she can relax and enjoy Christmas, so she heads off to her workshop in Hevingham, and I take the dog for a walk!

I have had some really moving comments in response to my vlogs on YouTube, and I spend some time this morning responding to them.  I get quite choked up when I realise that I have helped someone deal with their own problems, simply by highlighting how I am managing to cope with my own.

Right sided tremor (and dystonia) is fairly well controlled at the minute, but my left side is a different matter.  It’s not that it is unbearable, just that it’s a flipping nuisance!  I decide that I will risk another small adjustment on my left hand side because I don’t seem to have any dyskinesia in my neck (which relates to stimulation on my left hand side) at the moment – I can always reduce it again if it’s a problem.  So now my settings are 2.2v on the left side and 2.3v on the right.  Balance and walking aren’t perfect at the moment, but are not causing me too much concern.  Mood, motivation and energy are all reasonable.  Voice – not great, but not as bad as it has been over recent days.  One symptom that has crept up on me and really bugs me is muscular stiffness in my arms – particularly my left arm.  During the day it doesn’t bother me (too much), but it’s when I get in the bath and try to wash my back…  It’s painful, and so frustrating.  I really appreciate that fact that my wife is happy to come and scrub my back, but at the same time I hate to admit that I need someone else to perform this task for me.  It’s like admitting that Parkinson’s Disease has got the better of me.  When I first had my DBS programmed I was amazed at the effect it had on  my muscle weakness and stiffness.  As time has progressed, and my programming has focussed more and more on targeting my tremor, then the effect upon my muscles has gradually declined.  It’s also possible, of course, that DBS control has remained static, but that my symptoms have progressed – who knows?

We are having dinner with my wife’s eldest son and his fiancee (and our granddaughter) this evening, so I make sure that the dog has a good run around this afternoon, get a load of logs in from the garden (in case we want to light the fire when we return home) and then drive over to Hevingham to join my wife and family.

My daughter wants to go shopping today.  She has an idea of what she wants to get for Christmas for my wife’s sons and their other halves, but hasn’t yet had the chance to buy the gifts, so we get ourselves sorted out at home (tea, coffee, breakfast, dog walk) and then set off for North Walsham.

After an hour and a half spent wandering around various shops we have had enough and my daughter has purchased what she wanted to purchase, so we get back into the car and drive on to Stalham to visit my mother.

My mum (who has advanced Parkinson’s) is pleased to see her son and her granddaughter, and her voice is stronger than usual, so she is actually able to have a conversation (of sorts) with us.

My tremor is very close to the surface and breaking through on both sides from time to time, but it is manageable so I’m not going to make any adjustments today.  It’s only later in the day that I notice that I managed to select my Group “B” settings instead of Group “A” when I changed my device to its daytime voltages this morning – not sure how I managed to do that, but at least it explains the way my tremor differs from the way it was yesterday.  I set it back to Group “A” and things improve (to a degree).

My wife’s son and his girlfriend are coming over to see my daughter and to have dinner with us this evening, so we drive back to Southrepps in time to see them.  Then it is time for my daughter to drive back home to Stevenage (a truly flying visit) as she has things she needs to do at home before she travels to Dorset to spend Christmas with her mother.

By the time we have the house to ourselves again, all we want to do is clear up the fallout from the evening meal, crack open a beer and sit by the fire while some soothing music (London Grammar) plays on the sound system.

I have a busy day ahead.  I need to finish the script for my 2nd vlog, and then I need to video myself, transfer the video to my MacBook, edit, sub-title and watermark the video and then upload it to YouTube and publish it!  Around this activity I need to fit in my visit to the dentist to have a tooth extracted, walk the dog (twice) and go shopping in North Walsham.  My daughter is visiting us tonight, so I need to get something for dinner (ready meal Thai green curry) and something for her to drink (pear cider).

I have my morning cuppa and Nutriblast while I am finishing the script for my vlog, and then walk the dog before PopMaster starts.  The courier calls to collect the parcel to my brother in Nova Scotia, and the postman calls with a couple of packages for me – at least that’s got the doorbell ringers out of the way before I start videoing!

I shoot the vlog video in 2 takes – I’m getting better at being in front of the camera, and the vlog doesn’t have to be perfect!  I load the video onto my MacBook before leaving to go to the dentist in Aylsham.

Tooth extraction cancelled!  My dentist has been reading a letter from the DBS team at the NHNN, and isn’t comfortable with performing dental surgery until he has spoken to my consultant, so it probably won’t happen until the New Year now.

I dash to Lidl in North Walsham, grab the ready meals, pear cider, and a couple of other bits and bobs, and then head for home.

I get back just as the light is starting to fade, so take the dog for a quick rub around the Village Hall playing field.  Then it’s time to edit my video.

My left leg is jumping around a bit this afternoon, which makes editing the video on a laptop a bit  of a challenge.  It seems worse than it was prior to my increasing the voltage the other day…  perhaps it’s just a glitch and it’ll calm down again later – I won’t make any further adjustments at the moment, especially as neither my dystonia or dyskinesia are any worse.  My voice is being a bit of a pain, though – it really hasn’t been very strong for at least the last week.  I notice my balance and walking aren’t (quite) as good as they were yesterday, but they have been worse!

Vlog edited, sub-titled, watermarked and uploaded just as my wife gets home from work – result!   I light the fire, my wife does her whirling dervish impression as she gives the entire house the once over, and then we sit down and await the arrival of our visitor.

My wife seemed to have a much better night’s sleep last night.  She was awake early, but not that early (after 6am), so I am going to put that down to the cup of hot chocolate I made for her (with CBD infused milk) an hour before we went to bed.

I am going to decarboxylate the Olimax CBD oil today.  Decarboxylation is required to convert the CBDA (CBD Acid) into CBD.  CBD is more bioavailable, than CBDA, which just means that the body is more able to use it.  The lab report on the manufacturer’s website shows that the 4% oil only has 0.8mg of CDB, the other 320mg is CBDA – not really what is required!  To decarboxylate the oil, it needs to be heated to about 100 degrees Centigrade for about an hour, so I put my sample CBD oil in a pan with about half a pint of water (to keep the temperature to that of the boiling water) and also chuck in a couple of tablespoons of coconut oil so that (hopefully) the CBD oil will combine with the coconut oil, and thus will become solid at room temperature – I haven’t tried doing this before, so it’s just a theory at the moment!

While my oil is debcarboxylating, I get the camera and tripod set up by the cooker and take some shots of the process to use when I put my review video together.  I also get my thoughts down on my iPad, to use as a script for the video.

When the hour is up, I let the pan cool down to room temperature, and can see that the oils are a nice dark green colour, and appear to be well combined, so I put the pan into the fridge to speed up the setting.  Once it has set, I pour off the remaining water, and I’m just left with the decarboxylated oil.  I will cut it up into dose sized portions and try taking some tomorrow.

Tomorrow, I have also committed to publishing my next vlog, so I need to script that today, so that I can video it tomorrow morning – I’m having a tooth extracted tomorrow lunchtime, so I’m guessing I won’t be feeling like doing very much videoing tomorrow afternoon.

I’m feeling a bit shaky this afternoon, even though my DBS seems to have my tremor under control, so I self-medicate with a little cannabis after I have taken the dog for her afternoon walk.

I have a couple of minor jobs to get out of the way today and then I want to start work on my next video review.  So, I get my routine stuff done (tea, Nutriblast, dog walk, PopMaster) and then arrange for a courier to pick up a parcel to send to my brother in Nova Scotia.  Then I ring my dentist to get his email address – he’s extracting a tooth on Friday, and I have am email from the DBS team at the NHNN telling him what precautions he needs to take because of my DBS.  I get a basket full of logs in from the garden for the fire tonight (it’s not really cold, but I do like having the fire lit).

Okay, now I’m set to start work on my review of the Olimax CBD oil sent to me by the Polish Medical Marijuana website.  I have recently joined a group on Facebook called CBD Users UK, which is an extremely busy and useful group for anyone considering using CBD, so I take a couple of snaps of the Olimax products and post a message to the group asking if anyone had come across the Olimax brand before.  I’m virtually inundated with responses, and eventually come to the conclusion that at least one of the oils sent to me will be of little use without some further processing.  I set up the camera and tripod and take some shots of the product, and then take the recommended dose of 4 drops.  2 hours later, there’s a very mild sensation, but nothing to write home about.  I’m going to decarboxylate the oil in some coconut oil tomorrow to see if that livens it up a little – watch this space!

Tremor is very close to the surface on both sides, and it’s hard to make a judgment on whether or not the small adjustment that I made yesterday has had any effect.  My balance and walking are much better today.  Dyskinesia and dystonia are much the same as they have been for a while now – both present, both bearable!

I walk the dog again, and then set about making a nice root vegetable mash to go with our dinner tonight – I made one last night, and it went down extremely well.

We had a little bit of a late night last night.  We went to see Glenn Tilbrook perform at Norwich Arts Centre, so we didn’t get home until close to midnight.  Then I made my wife some hot chocolate with a dash of CBD infused milk to see if it would help her sleep.

I slept well, but did wake up briefly on several occasions.  My wife got off to  sleep quickly enough, but didn’t have a great night’s sleep – I’ll try giving her a larger dose of CBD infused milk tonight.

I want to install some door furniture today.  The bedrooms have doors fitted, but the doors have not had the latches and handles re-fitted after being removed for the renovation of the doors.  I have a search around the freshly re-organised conservatory for the tools that I require to do the job, and find everything fairly quickly.  There’s just one problem – my wood chisels (required for cutting the door frame trim) are as blunt as a bunch of very blunt things.   I need my bench grinder to sharpen them, but I can’t locate my bench grinder.  After a bit of scrambling around on the floor of our spare bedroom (because I think it might possibly be somewhere under the spare bed) and quite a lot of swearing, I decide to leave that task alone for the day.

I am having a tooth extracted on Friday, and the dentist wants confirmation from my DBS consultant that this is okay, so I dash off a quick email to the DBS team at the NHNN.   Then I order a Christmas present for my daughter on eBay (hope it arrives in time for her visit this weekend – I left it a bit late!).

It’s a miserable, grey, drizzly day in Norfolk, and I have to pick my time for the afternoon dog walk, but eventually it stops raining just after 3pm, so we venture out before it starts again, and before it starts getting dark.  My walking is quite stilted this afternoon, and I must be quite a sight stomping around a muddy field in my wellies.  Hopefully there’s nobody looking.

When we get back home, I decide to light the fire and watch the flames – very soothing.  I have had the usual tremor breaking through on my left side, and also a (very) small amount of tremor on my right side.  I decide to increase the left side voltage on my neurostimulator by one notch, and see how much effect that has.  My (daytime) voltages are now 2.15v on the left and 2.3v on the right.

 

 

I had a better night’s sleep last night (I remembered to turn my device voltages down!).  I return it to daytime settings when I get dressed.

Downstairs, I drink my tea and Nutriblast while my wife is getting ready to go to work.  I’m expecting someone to collect the wooden “thingummyjig” that I sold on Facebook over the weekend.  They are due to collect it at 10.30am, and my main concern is that it might interfere with PopMaster!   In the event, they turned up at 10.35, right between contestant #1 and contestant #2, so I was able to deal with it without disrupting PopMaster – result!

I’ve received an email from the Cleveland Cannabis College informing me that the first batch of video files that I sent to them had now been copied out of DropBox, so I delete the first lot, copy the next 4GB of files to transmit to them and then send them an email telling them exactly what I have done.

Tremor persists in breaking through on my left side (right side is under control at the moment), so I decide to take a double dose of the Charlotte’s Web Everyday 200 CBD oil that the Polish Medical Marijuana website sent to me (this oil has quite a low CBD content, hence the double dose).  An hour or so later I can feel the (mild) effects, and tremor is a little calmer (although not entirely gone).

My wife has been very stressed lately, and hasn’t been sleeping at all well. Although she is loath to take any form of medication to help her cope with the stress or to help her sleep, she might be persuaded to try some CBD infused milk in some hot chocolate, so I infuse the remains of the CBD tea (that I reviewed) in 800ml of full fat milk, and then cool and refrigerate it so that it’s available if she decides that she needs it.

I take the dog for her afternoon run around and then spend half an hour splitting logs and stacking them by the woodburner when we won’t actually be needing them this evening – I forgot that we are going out tonight to see Glenn Tilbrook at the Norwich Arts Centre.  Never mind, it saves me doing it tomorrow.

I had a fairly restless night.  I wasn’t lying awake, just conscious of having been thrashing about a bit from time to time.   It was only when I was getting dressed and went to change my device over to daytime settings, that I realised I hadn’t reduced the voltages last night when I came to bed.  I could have sworn that I had done so, but my therapy controller tells no lies!  At least that explains all of the thrashing around.

I knew that the aim of all of my wife’s efforts yesterday was to clear enough room in the dining room for a Christmas tree, so it wasn’t too much of a surprise when she announced that she would like to go to the smallholding next to Gunton Station this morning to buy a tree!  So we drive the mile or so to Gunton Station and buy the smallest tree we can find (which is still quite a size), cram it into my wife’s little Seat Ibiza, and drive the mile or so back home (with a prickly branch stuck in my ear).

It’s a bit early (as far as we are concerned) to have the tree indoors and decorated, so my wife finds a pot to accommodate the roots, and makes our little tree comfortable out in the back garden.

Next on the agenda – visit my mother, and get some groceries.  We drive to Stalham to see my mum, who is back home again following a brief stay in North Walsham Cottage Hospital.  She seems much better than when we last saw her, so that’s reassuring.  On the way back to North Walsham, we stop off at Wayford Bridge to check on the boat.  The boat is still afloat, which is also reassuring!  Final stop is Lidl for some groceries, and then we head back home.

I take the dog for her afternoon walk (before it gets too dark for her to see the grubby old tennis ball that she likes me to throw for her), and then light the fire before we sit down to have some dinner.

Still the same situation with my symptoms – tremor still breaking through, but not quite enough to make me turn the voltages up on my neurostimulator for fear of provoking dyskinesia.  Dystonia – ditto!  My voice seems a little stronger today, but my balance is still a bit pants.  My mood and motivation have been stable for quite some time, now – long may that continue!  Energy isn’t fantastic, but has been much, much worse.  I’m going to self-medicate with a little cannabis and watch a little something on Netflix!

Today my wife has made a long list of things she wants to get sorted out before Christmas, which means that I really need to get out of her way!  She has a couple of minor tasks earmarked for me, too.  She wants me to advertise, and get rid of, a piece of furniture that we have no room for, and to put some latches and handles on the bedroom doors before my daughter comes to stay next weekend.  So I start by taking various photos of the wooden “thingummyjig” (I haven’t a clue what it is, but I’ve had it for years) that we want to get rid of, and then formulating a witty (at least I think so) advertisement to post on the various local “For Sale” pages on Facebook.

While I’m busy doing the hard work, my wife organises the conservatory (again!), washes the tiled floor and clears a space in the dining room for the Christmas tree (which we haven’t got yet).

Within a few minutes of me posting my first advertisement, I have a message from someone who wants to buy the “thingummyjig”, so that’s good and my wife is pleased (so that’s extra good).

That just leaves the door handles and latches to fit.  My wife has found the bag with all of the necessary bits and pieces in it – all of the handles and latches that I took off the doors when I was preparing to renovate them 5 years ago.  Now the trick will be to match up the right latches and handles with the right door.  That’s a job for tomorrow – I don’t want to overdo things!

I get the logs in from the garden, clean the woodburner – emptying the ash and getting the soot off the glass windows in the doors – and then lay the fire ready for lighting this evening.

Tremor is breaking through on both sides this afternoon.  It was breaking through on the left hand side from the word go this morning, and I very nearly decided to increase the voltage on my neurostimulator, but resisted the temptation to do so in case it was just a passing phase.  I am still tempted to do so, but resist again because I am worried about aggravating the dyskinesia (which is tolerable at the moment).  If the dystonia in my right foot gets any worse, then it will be time for an increase!  My voice remains quite weak at the moment, and my balance is a bit unpredictable, but generally I’m okay.

Whoops!  My apologies to those of you that receive my blog via email – I’m afraid I published yesterday’s enthralling edition before I had finished writing it.  Here’s a link to the full post.

I’m thinking about doing a weekly vlog, at the suggestion of a number of people who have commented on my YouTube videos, so I am going to spend some time today thinking about what on earth I could say that would prove interesting to others…  First things first, though – tea, Nutriblast, dog walk and PopMaster!

Once the important things have been accomplished, I sit down with my iPad and try to make some notes about Parkinson’s Disease, what it means to have it, what perceptions people have about it, what people may not realise about it.  I latch onto a couple of points, and before I know it, I have quite a script.

Strike while the iron’s hot…  I set up my handheld digital video camera in the lounge in front of the sofa and, after a couple of practice runs, shoot the video for my first vlog.

It’s a much more straightforward job than making a review video – it doesn’t matter (so much) if I fumble a few words, and I can do most of it in a single take, so getting the video onto my MacBook and editing it is a breeze.  I upload the result to YouTube and publish it.

I feel strangely nervous about it – perhaps because it’s about me, rather than some kind of product that I’m offering a critique on.  Oh well, it’s done now – publish and be damned?

Another good night of sleep, thanks to self-medication with cannabis.  I have a busy day ahead of me – I want to edit and publish my review of the CBD tea infused milk, and then I have another appointment (the second one of the week) – this time it’s at the hospital rather than the dentist!

After walking the dog, drinking my tea and Nutriblast, and whilst listening to PopMaster, I make a start on editing my review video.   Time flies by in a blur when you get really involved in something, and before I know it the dog is asking me to take her for her afternoon walk.  I finish sub-titling and watermarking the video, upload it to YouTube, and then publish it and take the dog for walkies.

My hospital appointment is a screening for bowel cancer, and is scheduled for 7.15pm.  My wife gets home from work early, and we set off to the Norfolk & Norwich hospital, which involves a trip around the ring road at rush hour – joy!

Whilst going through the paperwork prior to the screening procedure, I’m given a tiny insight into how mistakes can be made!  I filled out the medical details form, and made sure that I wrote “DBS installed April 2016” against the question about implants, and I also noted “DBS neurostimulator” next to the question about pacemakers.  As she went through my form, the nurse said “no metals in your body. that’s fine”.  I said “Er, yes!  I have DBS” to which there was no acknowledgement.  I can’t see how a screening for bowel cancer could affect my DBS (or vice versa), but if that’s the case, why ask the question?  I made sure that the person operating the scanning equipment was aware – I don’t want anyone saying “you should have told me” after the event!

I’ll spare you the details, but let’s just say the procedure is most uncomfortable, and half way through, my tremor kicked in with a vengeance and I lay on the table a shaking wreck.  Anyway – it’s soon over and done with, and I’m given the all-clear, which is good news.

On the way home, we pay a quick visit to Asda (beer and tomorrow’s dinner) and pay a visit to the in-store McDonald’s.  Satan’s food, but it did fill a gap!

The CBD infused milk that I drank yesterday afternoon was effective for almost 12 hours, and was certainly useful to me in getting off  to sleep last night.  I didn’t have a bad night’s sleep (considering that my wife did have a bad night’s sleep) and only awoke briefly on a couple of occasions.

Out of bed.  Adjust my device (daytime settings!).  Get dressed.  Downstairs.  Tea.  Nutriblast.  Dog walk.  Popmaster.

It’s time to address my crumbling teeth…  I had a crown (dental variety) part company with one of my molars whilst I was on holiday, and today I have an appointment with the dentist to see if said crown can be reunited with said molar.  I’m going to see a new (to me) dentist today, on recommendation from my wife’s youngest son, so I arrive early to compete the necessary “new patient” paperwork.  Whilst he is preparing to have a look-see, I mention to him that dental metals (particularly mercury amalgam) don’t agree with me.  Usually this is the cue for a long silence where the health professional waits for me to say something less controversial.  I am, therefore, surprised to find him willing to discuss the matter, and then to admit that there could well be a link between dental metals and Parkinson’s Disease.  He was also aware of what DBS was, and asked me to consult the DBS team to approve a tooth extraction (required because my molar is irreparable).  A very promising start, even if he couldn’t put my crown back on!

When I get back home, I decide to get the logs in from the garden before walking the dog again.  My recent log delivery is a bit on the large size, and large logs are difficult to burn if you do not also burn some solid fuel, so I get the log splitting axe out of the shed and spend a happy half hour splitting some of the larger logs into a more manageable size.  I’m pleased that I am capable of swinging the axe – something I haven’t done for a very long time.

Logs split and carried indoors.  Dog walked.  Time to light the fire, and then finish the task of importing the rest of yesterday’s video onto my MacBook.

Tremor is (once again) breaking through, mainly on my left side, and dystonia is on the increase in my right foot, so I intend to self-medicate (cannabis) in a moment or two.

I have decided that I’m going to try making some CBD tea again.  The last time I tried it was when I was videoing a review of it several weeks ago, and I found it to be of minimal benefit to me.  I got chatting to someone online last night who convinced me that I had prepared it incorrectly – to get the maximum benefit from it I should decarboxylate the tea by putting it in the oven for 45 minutes, and then bung 7 grams of the tea into 400 millilitres of full fat milk and steep it over a gentle heat for another 45 minutes.  So… I video the process, just in case the effects are such that I have a change of opinion and need to produce another (updated) review.

My tremor is close to the surface again today, so it seems to be a good time to try the CBD tea.

My wife disappears off to work, so I walk the dog, listen to PopMaster, then turn the kitchen into a studio again and film the process of making this CBD infused milk.  Then I drink the milk – it has a slightly bitter aftertaste from being steeped for such a long time, but other than that it tastes pleasant enough.   I’ll try chucking some drinking chocolate in it next time!

I was told it would take about an hour to feel any effect, but after 20 minutes I can feel it relaxing me (and sending my tinnitus through the roof).  By the time an hour has passed I’m extremely relaxed, and there’s no doubt that this infusion is more effective than the Charlotte’s Web Everyday 200 CBD oil that I reviewed a couple of weeks back.  I’m astounded – I hadn’t bargained on getting this kind of a response from a tea.   I write the script for my (revised) review, and then set up the camera. tripod, radio microphone, etc. and film it.

I walk the dog again before it gets dark, and then start the process of importing the video to my MacBook for editing (tomorrow).

It’s now 6 hours since I drank the CBD infused milk, and I’m still fairly well medicated – I’m most impressed.  It will be interesting to see how I sleep tonight!

 

My car has been sitting without being used for almost 2 weeks now.  I tried to start it yesterday, but it had a flat battery – scarcely enough charge left in it to light up the dashboard!  I bring my wife’s car in front of mine, and connect the jump leads.  After a few minutes, my car’s battery is sufficiently charged to enable me to start the engine, and I take it for a quick spin to charge the battery a little more so that (hopefully) I will be able to start it again in the next day or two without having to jump start it.

The next task for today is to clear a space to stack the delivery of logs that I am expecting this afternoon, and rig up a tarpaulin to keep them dry when it (inevitably) rains.  So, I clear a space and rig up a tarpaulin, and then await delivery.

My energy is much better today, but my tremor is acting in defiance of my DBS hardware, breaking through on both sides of my body.  It’s not too much of a problem, though.  Dyskinesia and dystonia are (likewise) bearable.  Balance and walking are ok, too.  My voice is still struggling a bit, but perhaps that’s because I use it too much 🙂  Mood and motivation are (still) pretty damn good!  What I am having a lot of (at the moment) is muscular stiffness and pain – perhaps that is something to discuss with the DBS team at the NHNN, because I know that they can alleviate it by programming my device.  I’ll definitely be talking to them if it persists.

The man arrives with a large trailer full of logs, and dumps them in the road outside our back garden.  Luckily my wife is working from home this afternoon, so she helps me carry the logs into the back garden and stack them against the back wall.  It takes us a solid hour, but when it’s done I know that we won’t have to do it again for at least a couple of months.

I light the woodburner while my wife prepares our evening meal, and then collapse (exhausted) on the sofa.

Time for a beer, methinks.

Another decent night of sleep.  Not quite as good as the night before, but I only woke up twice (3am and 7am).  I think I was slightly more medicated the night before, which could explain it.  I’m feeling that I have a little more energy today.

I leap out of bed (okay, it’s more of a crawl) at 9.25am, adjust my neurostimulator to daytime settings, and go downstairs to where my morning cuppa and Nutriblast are awaiting my attention (courtesy of my wonderful wife).  My wife is off swimming with our granddaughter this morning, so she’s out of the door soon after I get up.  I take the dog for her morning business, and then spend some time checking my DropBox file uploads (still chuntering away) and my email (nothing but junk mail).

When my wife returns, we head off towards Norwich – we have a couple of pre/post-Christmas birthdays to buy for, as well as Christmas gifts we need to purchase.  First stop is Asda to stock up on beer (we have our priorities right) and pressies for the dogs (yes, we really are that soft!).  Then we drop into Dunelm Mills to pick up something that my wife found online a couple of evenings ago.  Final stop is Aldi in Sprowston – principally for organic vegetables, but my wife managed to find a couple of gifts in there as well.  Home again by 5pm, and it’s already completely dark.  We both take the dog for a brief walk around a very dark field, and then sort out some dinner, and relax!

I’ve been pretty tremor free today, but now I notice the shakes coming through in my right hand, and dystonia is increased in my right foot – I’m not going to adjust my device, but I am going to self medicate (cannabis).  I’m sure it’s just because I’m tiring from this afternoon’s activities.

I self-medicated with some cannabis before coming to bed last night, and had the best night’s sleep I’ve had in ages – slept right through until almost 6.30am, and then went back to sleep again until gone 9am.  So why am I lacking energy?

I get dressed, change the settings on my device to daytime values, go downstairs, and just sit…  There’s nothing in particular that I need to do, but I haven’t the energy in any case.  My wife walks the dog this morning, which is good/bad (good because I have no energy, bad because it would normally be the thing that gets me out of the house in the morning).

I check on the DropBox folders to see how the transmission of my video files to the Cleveland Cannabis College is going – it says that it’ll be finished in 2 days time!  I put together (and send) an email to my contact at the college, telling him what all the files are.  I could really use some more space on DropBox.  If I refer someone to DropBox and they register and install the software, they will give me an extra 500MB of space… So, I register my wife and get an extra 500MB (thank you!), and then register the dog as well (another 500MB) 🙂

I prise myself out of the house by taking the dog for her afternoon walk, and then my wife and I go to North Walsham for a quick whizz around Lidl, and then on to the Cottage Hospital to visit my mum (who is fast asleep, and I didn’t have the heart to wake her).

My symptoms are much the same as yesterday, apart from the lack of energy.  My voice is still weak and husky, which is a blooming nuisance, but otherwise I’m doing just fine.  I’m definitely going to self-medicate again just before going to bed – hoping for another good night of sleep (and some more energy, perhaps).

I remember to change my device settings to my daytime voltages when I get up this morning, but I still have a little bit of tremor coming through on my left side.  I may self-medicate with a little cannabis later on, if it doesn’t settle down.  I stopped videoing for the Cleveland Cannabis College yesterday because I was getting exhausted, so I have to go through the rigmarole of getting everything set up again in order to get a couple more takes.

I take the dog for a walk and then wait for my wife to go to work so that I have the house to myself (well, apart from the dog), and then set up the camera, tripod, radio microphone, lighting, teleprompter app, and clear the island in the kitchen before sitting down for PopMaster.

I finish the take that was incomplete from yesterday, and then do one more to be on the safe side.  Then I load the video onto my MacBook and set about transmitting the video files to the college via DropBox.  There’s a lot of data to transmit (about 12GB), so it’ll probably take a couple of days to go through, especially since I haven’t got that much space available on DropBox, so I’ll have to send it in small chunks!

That’s taken care of the bulk of the day – it’s starting to get dark now, so it’s time to take the dog for her afternoon walk.  My tremor, which has been a nuisance all day, has finally abated – just as I’m about to administer some cannabis.  I’ll save it for later to ensure that I get a decent night’s sleep – the last two nights have been very restless!  Dystonia remains about the same (it’s there, but manageable) and Dyskinesia seems to have reduced a little – either that, or I’m just getting used to it!  My voice is the worst thing at the moment – very weak and husky, and strangling my sentences a lot of the time.  It has made my videoing quite difficult.  Hopefully it will improve soon!

I’m videoing for the Cleveland Cannabis College today, so I have loads of preparatory work to do.  While my wife is walking the dog, I bring the camera, tripod and bag of video goodies (radio microphone, connecting cables, remote controls, batteries, etc.) downstairs to the kitchen/studio and then clear the island of plant and fruit bowl so that I can put all of my paraphernalia on it instead.

Once my wife departs for work, then the serious business commences.  Firstly, I need a shave.  Then I have to iron the Cleveland Cannabis College t-shirt that they sent for me to wear.

I wonder why my tremor is so bad this morning, and then I realise that I have forgotten to return my device to its daytime settings, having reduced the voltages at bedtime last night (still sticking to 1.9v on the left and 1.7v on the right at bedtime, and 2.1v on the left and 2.3v on the right during the day).  I make the necessary adjustments, and my world becomes a little steadier.

I load the video script into the teleprompter app that I have on my iPad, and then do a couple of practice runs to make sure that the text is scrolling at the right speed.  I set up the camera and tripod in the kitchen, and the music stand that I use to hold my iPad while I’m running the teleprompter app.  I set up the radio microphone and adjust the room lighting, and then I’m just about ready to shoot!  I’m not editing the video for the Cannabis College – just providing them with the raw footage so that they can edit it however they want – so you would think that would make my job easier.  Not so!  The perfectionist in me has me doing re-take after re-take because I want the raw footage to be as near perfect as possible.  I would normally do two or three takes, and then edit around any mistakes – I must have done about 30 takes this afternoon, and now I’m feeling exhausted and my voice has almost packed in!  Tremor has been creeping back on both sides as I get more tired, so I decide to pack it up for the day and have a sit down before taking the dog for her afternoon walk.

After dinner, I review the video and start importing it onto my MacBook, ready to send to the college via DropBox.  I’ll finish this tomorrow – for now, I’m going to open a beer!

I returned from holiday to find that I had been paid some money through PayPal by the Cleveland Cannabis College – I am providing them with some video to show to their students.  I’m going to review the video script today, in preparation for shooting the video tomorrow and Friday – the first piece of real paid work that I have had in many, many moons!

My wife walks the dog and then disappears off to work, and I get on with the task of reviewing the script.  I make a number of small amendments and add a paragraph or two that I’m pretty pleased with, then send it off to my contact at the Cannabis College for his approval.

The landlord of The Vernon Arms calls at the door with a parcel that he took delivery of while we were away on holiday, and I take the opportunity to ask him for the telephone number of his log supplier.  “Ah, yes, I have got his number, just haven’t got it on me” he said, “pop over to the pub and I’ll give it to you – perfect excuse for a lunchtime pint!”.  And so I did…  I took the dog with me, got the number of the log man, and lingered in front of the open fire with a very leisurely pint of Abbot Ale.

Tremor is breaking through on both sides (more left than right), but I’m not about to fiddle with my device settings just yet – I’m sure it’s due to travelling back from holiday, the subsequent tiredness, and the stress of actually having something specific to do!  Dystonia and dyskinesia are both present and correct, but neither of them is giving me too much bother.  My balance and walking seem a little better than yesterday, and so does my voice.  Mood, motivation and energy are all fairly stable too.  I’m feeling pretty good at the moment.

I get back from the pub to find an email from the Cannabis College approving my revisions to the script, so I’m all set to start work tomorrow.

We have a bit of a lie-in this morning, and I’m not out of bed until gone 10am.  My wife is already busy laundering all of the dirty clothing that we returned with from our holiday, and getting things back to normal.  Then we have to go shopping at Lidl in North Walsham, collect our dog from my wife’s parents in Worstead, and visit my mum, who is still in North Walsham Cottage Hospital.

The shopping is relatively painless, the dog is pleased to see us (last time she ignored us for a couple of days), my mum is doing well and is expected to return home later in the week (provided a care package can be sorted out for her).

On the surface, there is no more stress here than there was in Lanzarote, but I know that my tremor is closer to the surface than it has been for the last week, even breaking through (briefly) on a couple of occasions, and I’m sure it’s related to stress.  My balance is still fairly poor, my walking is still fairly stilted.  My voice is stronger today, and dystonia and dyskinesia aren’t such a problem.

We pop over to Hevingham to see my wife’s sons and our granddaughter, and to remove the roof rack and roof box that we had installed to carry all of our luggage.  Then we are back home for dinner and to relax for the evening.

The holiday is almost over – we have to be at the airport around 3pm for our 5pm flight to Luton.  We make the most of our remaining time, and are soon down at the local beach armed with our snorkelling gear.  The sun is incredibly strong (for November) and the temperature is well into the 20’s centigrade – it’s going to be quite a shock returning to the UK.

We get back to our apartment for 1pm, have showers, pack our cases, have a quick tidy around, load the car and then we are off to the airport.

Lanzarote airport security are much more accepting of my Medtronic card than Luton airport security, and I bypass the scanners without any problem.  I’m given a thorough frisking (albeit not as thorough as the one at Luton airport) and we are through to the departure lounge.

Our flight leaves ahead of schedule, and the pilot also manages to take a short cut, so we land at Luton airport half an hour early.  Still, it’s 2am by the time we get through our front door.  It’s also flipping cold!  -2.5 degrees centigrade, and our car is sparkling white in it’s coat of frost.

It’s a real shame that the holiday is over, but it’s such a pleasure to be back in our own bed.

We are off to Playa Chica today.  Pre-Parkinson’s Disease that would be just a little stroll along the seafront, but instead we chuck our gear into the back of our hire car and drive to the old town – probably about a mile and a half away.

It’s another beautiful day, and we stay there swimming, snorkeling and sunbathing until the sun is about to set.  My wife and I check out the scuba diving courses at Safari Diving – I promised my wife a really special holiday if I made it through my operation, and we want to go to the Maldives next year.  If you’re going to the Maldives then you really need to be able to scuba dive to get the most from the holiday, and we have been planning to do the basic PADI course in the UK, but obviously it’d be nicer (and warmer) to do it over here.  We will have to sit down and cost it out when we get home.

My knee is a lot better today, still giving the occasional twinge, but nothing like the stabbing pain of the last few days.  Tremor, dystonia and dyskinesia are all under control.  Balance and walking aren’t too bad. MThe only thing that is a problem today my voice, which feels very weak, and ends up strangling the ends of my sentences.  Still, if that’s all I have to complain about, then things are pretty good.

We are going out for a slap up meal tonight, since it’s the last night of our holiday.  I’m going to end my blog here – things could get messy later!

We aren’t going very far at all today.  We had intended going to the market at Haria this morning, but when it comes down to it nobody feels like going.  The sun is shining, so we get our swimming stuff together and head for the nearest beach on foot.

By the time we get to the beach, it’s raining and some very dark and menacing clouds have gathered.  I’m all for getting in the car and driving to the other side of the island to see if the weather is better over there, but my wife’s son persuades me to wait 10 minutes and see if the sun returns.  It does.  We spend the rest of the day sunbathing, swimming, snorkeling and eating expensive ice creams from the Italian ice cream kiosk on the promenade.

When we eventually return to our apartment, we discover that we’re almost out of beer, so I drive to Lidl to buy some more while my wife cooks dinner.

After we have eaten, my wife and the rest of the gang go shopping for perfume and clothing, while I stay behind to have a shower and a shave – I’m feeling very tired and don’t want to overdo it.  Today is the first day of the holiday that I’ve felt that my tremor is close to the surface, and I’m sure it’s because I’m getting over tired.  My balance and walking have also deteriorated, and my dyskinesia has been worse today.

It’s a windy day on the island today, making the temperature feel much lower than it actually is.  We decide to drive out to Los Hervidores and El Golfo today.  The tide was not fully in, so Los Hervidores wasn’t as spectacular as it is usually, but still a nice way to spend the morning.

On returning to Puerto del Carmen, we stop in the old part of town and have a late lunch in one of the restaurants that overlook the port, then pop into Lidl on our way back to the apartment to get some bits and pieces for our dinner tonight.

My knee is still painful, but it’s most evident when climbing steps, so I’m taking things very slowly at the moment.  I’ve also noticed that my wheezing (which manifested itself immediately following my operation in April) had been much worse lately, and I’m getting out of breath putting my socks on, or tying my shoelaces.  I’d probably be inclined to ignore it, but my wife is concerned and wants me to see the doctor about it, so I’ll add it to the list of things to discuss with my GP when we get back home.

Tremor is so well controlled at the moment that I’m loath to make any adjustments to my device.  Dystonia is also pretty well suppressed, but dyskinesia keeps rearing its ugly head – it’s bearable, though.  My balance and walking seem slightly better today.

A day of lazing around… Beautiful sunshine this morning, and scarcely a breath of wind.  We all sit around on the balcony reading books, eating breakfast, drinking tea and coffee – content to be doing nothing of any importance.

My right knee has been playing up again these last couple of days.  I presume it’s due to a combination of travelling and walking much further than would normally be the case, and disproves my theory that it was due to certain settings on my neurostimulator.  It’s not as bad as it has been previously, but still pretty uncomfortable, so I guess I’ll go and see my GP about it if it’s still a problem when we get home.

We stay local today, and go swimming and snorkeling at Playa Chica, which is just a short distance from our apartment.  The water is calm and clear and there’s plenty of marine life to see.

When we get back to our apartment I notice that my knee has got much worse (because there are steps to climb) and I elect to stay on the balcony with my book and a cold beer while everyone else goes for a walk to work up an appetite for dinner.

My wife’s son and his girlfriend got engaged last night, so we had a bit of a late one. We stayed out drinking at the  Africa bar until midnight, and then continued when we got back to our apartment. Amazingly, there are no hangovers this morning.

The sun is shining and we’re intent on getting to the beach at some point today.  We are off to the market at Marina Rubicon in Playa Blanca this morning.  We spend a pleasant hour or so wandering around looking at the various tat that is always on offer at these places, and then mosey along to a quiet little beach a little way up the coast.

The water feels cold in comparison to the air temperature, but it’s fine once you get right in.

My symptoms are very well controlled at the moment – I think it’s because I’m so relaxed over here.  As yesterday, the only thing that’s a bother is my balance and walking.  I did get a little tremor break through in my left arm at one point, but it was very brief and didn’t linger.

We eat out at a Chinese restaurant this evening, and then retire to the Africa bar again for some more live music.  We attempt to have an earlier night tonight, but it’s almost midnight by the time we get back to our apartment.

I had a reasonable night’s sleep, considering I wasn’t in my own bed.

I have to convert some currency this morning to pay for our accommodation, so I get up, adjust my neurostimulator to it’s daytime settings and walk to the nearest currency exchange place on the seafront.  It’s raining, but it’s warm rain so I just don’t care.  I’m too early for exchanging currency, apparently, because the shop isn’t yet open!  I return to our apartment and borrow the required euros from one of our group – we’ll convert currency later!

We decide to visit Timanfaya today, since the weather isn’t perfect.  It’s an amazing sight, even when you have seen it all many times before (as I have), and a great way to pass a few hours.

Puerto Calero is our next stop, where we sit in the sun drinking ice cold beers and eating some remarkably good food.

I haven’t even thought about tremor, dyskinesia or dystonia today, so they evidently haven’t been bothering me.  Balance and walking are both rubbish (and nothing to do with the beer!), but all in all, I cannot complain.

I’m on holiday this week, so apologies if my posts are rather brief – I have other things on my mind.

We were up at 5.30am after a very poor night’s sleep. A quick cup of tea, load the cases into the car and then we’re off to Luton airport.  Traffic is worse than I anticipated, and it takes us over 3 hours to get there – luckily we left in plenty of time.

This is the first time that I have flown since my DBS operation, and I’m a little apprehensive about going through security.  I tell everyone to remind me not to just walk through the security scanners, because I’m scared that I’ll forget not to do so.

I have my little card from Medtronic to show to the security guards, so I’m all set.  We drop off our cases, and head for security.  The security guard doesn’t know what to do when I show him my card.  “I’ve never seen one of these” he said “I’m only a trainee, I’ll have to get my supervisor”.  My card gets passed around a number of people, before they decide to let me avoid the standard scanner, and they ask me to step inside a different kind of scanner that they assure me is safe.  I pass through without any drama, and then I’m given a really thorough frisking – in fact I’m beginning to think the guard is enjoying it!  Then I’m through, and we proceed to the departure lounge.

We arrive at our destination on time, collect our hire car and then drive around in circles for a little while – we know exactly where we need to be, but had reckoned without the one way system.  Eventually we arrive at our apartment, drop off our cases, go shopping at the local supermarket, and then go to a local restaurant for a meal.

By the time we are walking back to our apartment, I’m really knackered and my feet are beginning to drag.  That’s the only thing that’s bothered me today – my walking has been fairly rubbish all day, but everything else has been well controlled.

I had a bit of a lie-in this morning, and didn’t surface until almost 9.30am.  We had a late one last night – my wife’s brother dropped in to see us, and we got chatting…  It was gone 1am by the time we got into bed last night (this morning).

I don’t rush to change my settings to their daytime values this morning – although I had quite a lot of left leg tremor while I was still in bed, I am remarkably tremor free since getting up and coming downstairs.   Half an hour later, I notice it creeping back, and adjust my neurostimulator.  Dyskinesia and dystonia are both pretty stable at the moment – they are both present (and I wish that they weren’t) but they don’t seem to be getting any worse (or any better) at the moment.  Even the really irritating neck twitch is manageable.  The only symptom that appears to vary significantly, without any apparent reason, is my balance.  It’s not causing me to fall, but it does have me hanging onto the walls for support at times.  I’m pleased to say that my mood, motivation and energy are also stable.

We are going over to Hevingham this evening to have dinner with my wife’s youngest son and his girlfriend, and my wife is cooking a chilli con carne to take with us.  We spend much of the day getting the house straight.  It’s not that we allow the place to get dirty or untidy, it’s just that our dog is losing her coat at the moment, and she has a lot of coat to lose!  Black dog hair adorns the rug in the lounge (and I did vacuum it yesterday), and the fireplace is also in a bit of a state (and that’s my domain), so there is a bit of a frenzy going on with the vacuum cleaner downstairs  By the time the light is fading (just after 4pm), the house is looking good, and we can leave it with a clear conscience when we go out tonight.

My brother calls to let me know that my mother (who is in the Norfolk and Norwich hospital) is being transferred to a rehabilitation unit in North Walsham today – it seems they have finally managed to find her a bed!  Her mobility seems to be improving, and it is looking like her inability to walk was due to her Parkinson’s Disease medication.  I’m so pleased that I don’t currently take any – long may this state of affairs continue!

There’s a sharp frost in Southrepps this morning, and the cars are sparkling white in the street outside our house.  It feels very cold, just looking out from the warmth of the house!  I put up no resistance when my wife says that she’ll take the dog out this morning.

I’m feeling particularly shaky when I’m sitting down on the sofa drinking my cup of tea – and then I remember that I’m still on my night time device settings.  I increase the voltages to their daytime values, and immediately I’m feeling calmer!

My mother, who has advanced Parkinson’s Disease, was taken into hospital a couple of days ago because she was unable to stand.  The consultant that she saw at the Norfolk and Norwich hospital was unsure of the reason, but surmised that it was probably due to progression of Parkinson’s Disease and that she may never walk again.  When I called the hospital yesterday, they said that she had been using a walker, and they were transferring her to a rehabilitation centre nearby – good news!  Today they have had to cancel the transfer due to a lack of beds at the rehabilitation centre, so she’s stuck in a geriatric ward at the Norfolk and Norwich for the time being.  We make the trek into Norwich to visit her late this afternoon (it’s almost a 50 mile round trip).  We are outside of visiting hours, but I ring the ward before we arrive, and they agree that we can visit until mealtime.  Mum seems pleased to see us, and has been up and walking (using a walker) again.  We have the usual communication problems…  her voice is scarcely a whisper (most of the time) and my hearing leaves a lot to be desired (all of the time).  We use my wife as a go-between because her hearing is (almost) sharp enough to hear what my mother is saying (most of the time).  We stay until we are ejected by the nursing staff when they serve dinner.

I’m getting tired now, and I can feel my walking is getting worse.  I’m aware that my left foot is making a scuffing sound as we walk back to the car.  I’ll be glad to get home and slump in front of the telly for the evening.

A day of video production lies ahead – I want to finish the editing, then add sub-titles and a watermark, and get it published before my wife gets home from work, so I’d better get a move on!

I till have a reasonable amount of left-sided tremor, in spite of my adjustment yesterday.  I would turn it up another notch, but I think I’m getting a little dyskinesia in my neck – nothing too serious, but I don’t want to encourage it.

I drink my morning cuppa and Nutriblast, and then take the dog out.  It’s really bloody cold this morning!  No frost on the cars, but there’s an icy edge to the wind that is blowing across the field his morning.  I’m really glad to get back inside into the (relative) warmth.  I still haven’t got around to ordering any logs, so I can’t light the woodburner, and I’m too mean (and too poor!) to have the heating on all day – I wear a nice thick fleece instead, and zip it right up.

I listen to PopMaster, and then get on with editing the video.

Editing done, sub-titles added, video watermarked.  I upload the Charlotte’s Oil review to my YouTube channel, and then post links to it on my Instagram, Twitter and Facebook accounts.  Then it’s time for another walk around the field with our dog – it feels even colder this afternoon than it did this morning, in fact it feels like Winter.  When we get back indoors, I put the heating on!

I mildly self-medicate (a beer and a minute amount of cannabis) while we watch a film on Netflix this evening.

 

My wife had a bad night’s sleep, which meant that I, also, had a disturbed night.  I remember being awake at 3am, 5am, 6am…  Luckily I managed to get back to sleep fairly easily, but I’m still feeling very tired today.

Tremor is (once again) quite strong in my left leg, even after I return my neurostimulator to its daytime settings – I’m considering upping the voltage a notch today.  My knee pain has completely disappeared, and I’m thinking that it is related to my device settings – I’m going to persevere with Group “A” settings for another week or so (just to be completely sure that the pain is really gone), and then switch to Group “B” settings for a few weeks to see if it recurs.  Tremor is also breaking through (on occasion) in my right arm, and the dystonia in my right foot would benefit from a little more help – the only thing that stops me from increasing the voltage on my right side is the threat of worsening dyskinesia.  It is currently bearable, even if I do impersonate a windmill (with my right arm) when I get up from the sofa – I really don’t like it when I am fighting the twitches, trying to pick up drinks without flinging them across the room.  My balance is generally pretty good today, although it has its moments.  I’m still very conscious of my poor stance when I walk, though.

Today I was hoping to edit the video footage that I shot yesterday, but my wife is in need of my MacBook for the preparation of a quotation for a loose cover.  We go through all of the calculations for fabric quantities, labour charges, cushion pads etc., and put together a quotation which my wife emails to her (potential) client.  Business has been very quiet for the last couple of weeks, and I know that my wife has been worried that there is no new work coming in (which is probably one of the reasons that she isn’t sleeping very well).  Within a couple of hours she has received an email back, accepting the quotation – another job in the pipeline!

I manage to do a little bit of editing before we sit down to dinner – tomorrow I’ll finish it off while my wife is at work!  I increase the voltage on my left side (now 2.1v on the left, and 2.3v on the right) –  I’ll let it settle for 24 hours and then review the situation!

My wife is out of the house early this morning – she’s gone just after 7am, leaving me in peace and quiet for the day.  Also leaving me to make my own tea this morning – it’s been so long since I had to make it, I’ve almost forgotten the recipe…

I change my neurostimulator settings to my daytime voltages (2.05v on the left, 2.3v on the right), and plan out my day.  I am definitely going to video my review of Charlotte’s Web CBD oil today – there’s nobody here to disturb me.  I clear the kitchen island (again), set up the camera and film some “before” shots of  the tremor in my left arm.  Then I take a dose of the oil, and wait for it to take effect.

My tremor is still breaking through on my left side, but is under control (mostly) on my right.  My balance is not as bad as it has been, but my walking is still a bit stilted.  Dyskinesia is still around, but it’s been fairly stable for some time now, and not too problematic.  Dystonia, ditto.  Mood, motivation and energy are all pretty good.

While I’m waiting, I take the dog for her morning walk, and then listen to PopMaster.  I feel the tremor reduce, and it’s my cue to get up off my backside and film the review.  I’m getting better at being in front of the camera, and manage to get the review filmed with only 4 takes.  Next step is to get the video transferred to my MacBook ready for editing, and that’s achieved in double quick time also.  I make a start on the editing, and then the dog wants another walk.  We get to the field next to the village hall only to find that the entrance has been fenced off – there has been some work pending for quite some time, which necessitates the closure of the field, but I wasn’t expecting it just now!   We manage to find a way around the barrier, and continue with our walk – they haven’t started to dig the field up just yet, but once they do, we will have to find somewhere else to exercise.

My wife returns bearing gifts (beers from Asda), so I finish my work for the day, bung a ready meal in the oven (a green Thai curry from Lidl), and we settle down in front of the telly for the evening.

I intend to video my Charlotte’s Web CBD oil review this morning, whilst my wife is out on an appointment (measuring up for a loose cover), so I clear the island in the kitchen, and set up the camera ready.  I’m just setting up the radio mic, when my wife returns home and announces that she’s going to spend the day preparing a quotation, and getting the company books up to date.  I hate having anyone watch me, so I pack the equipment away again, and resolve to shoot the video tomorrow instead.

I had a reasonably positive reaction to the Charlotte’s Web oil yesterday, and decide to take another dose of it today just to be sure that yesterday’s reaction wasn’t a fluke.  My tremor is about the same as yesterday (left sided, moderate tremor in my left arm, stronger tremor in my left leg), so I measure out the oil, and then drink it.  After about 45 minutes it is having an identical effect to that of yesterday, so I feel much more confident about giving it a positive review.  I will update my script to indicate that I have tried this more than once, and had the same result!

I get the last few remaining logs from the back garden, and fill the log basket – they’re a bit soggy, so I don’t think I’ll be very successful lighting the fire today.  I’d better get some more logs ordered this week – it’d be just my luck for us to have a cold snap and have no wood to burn.  I vacuum half the dog up from the lounge floor (she’s been losing her Summer coat and growing a nice thick Winter one), and then take the other half (of the dog) out to chase a tennis ball around the field.

The effects of the CBD oil last for quite some time, but it’s now 8.30pm and it’s definitely worn off.  I notice an increase in dystonia in my right foot, and have some break-through tremor in my right arm, too.  I self medicate with a little cannabis, and settle down to watch some telly.

I’m going to be product testing today, once my wife has gone to work!  She’s working from home for some of this morning, getting her expenses up to date – they haven’t been done since last December (we have had a bit of a year, what with my operation and subsequent convalescence).  I intend to test the Charlotte’s Web CBD oil that the Polish website sent to me, and then script the review ready to video it tomorrow (probably).

When I get back from the morning dog walk, I clear the kitchen island (which is where I’m going to film my review), set up the video camera and proceed to film some of the covering shots which I will be using (a close up of the product, measuring out the dose, actually taking the oil) and then transfer the video to my MacBook ready for editing.

My tremor is still breaking through a little on my left side (more so in my leg than my arm) so it will be interesting to see if the oil has any effect on it.  My right sided tremor seems to be under control, and dystonia is merely annoying today.  Dyskinesia is still around (in my right arm), but it’s not too problematic.

I took the Charlotte’s Web oil a couple of hours ago now, and I’m quite pleasantly surprised to find that it has calmed my tremor in my left arm.  My left leg still has some tremor, but it’s certainly better than before, and generally I feel that tremor is a shade further from the surface than it was.  I had been a little concerned that CBD alone would not have any beneficial   effect, since the cannabis that I use is high in THC and low in CBD – it’s not going to replace cannabis, but it could be useful in places where I can’t use my vaporiser.

I had a better night’s sleep last night, waking (briefly) at 3am and 5am, but  managing to get straight back to sleep.  The sun is shining when we pull back the curtains, which is a pleasant change.

I turn my device up to daytime settings when I get downstairs – tremor is really quite strong on my left hand side, not so bad on my right side.  Dystonia is still being a pain in the foot, but it’s bearable.  Balance is a bit off, and I’m having to hold onto things when I put my wellies on to take the dog out.  My knee pain has diminished further, and I’m becoming more confident about my assertion that it is related to my device settings!

My wife is busy making a cake for her youngest son’s girlfriend (who has a birthday tomorrow) as well as feeding the washing machine and generally getting things done around the house.  I bring the logs in, clean out the woodburner and lay the fire for this evening (it’s a little warmer today, so I’m not going to light it so early).

We sit down together this afternoon, and review accounting software for my wife’s business – we have been getting by with using an Excel spreadsheet up until now, but we really need something a little more suited to the task in hand, preferably free!  We settle on GnuCash, which seems to tick all of the necessary boxes (especially the ‘free’ one!) and set about installing it on my MacBook and then tailoring it to our requirements.  My left leg tremor is driving me nuts, and I increase the voltage on my device (now 2.05v on the left, 2.3v on the right) to try to rein it in.

I light the fire, we have dinner, and I declare an end to faffing about with software (at least for today).  Time to find some rubbish to watch on Netflix…

We awaken to another grey and cold day, and the rain is falling steadily.  Depressing!  I’d stay in bed all day if it were left to me, but my wife is up and putting the kettle on, so I reluctantly crawl from beneath the duvet and get myself dressed.  I set my neurostimulator back to its daytime voltages, and head downstairs.

We drink our tea, coffee and Nutriblasts and wait for a break in the weather so that we can take the dog for her morning leg stretch.  Luckily the dog has a cast iron bladder, because it doesn’t stop raining until gone 11am, and it resumes soon afterwards.

I’m feeling that my tremor is much closer to the surface on the Group “A” settings than it was on Group “B”.  I’m resisting  the temptation to self-medicate with cannabis because I want to try the Charlotte’s Web CBD oil that I have been sent by the Polish website, and don’t want anything else to be in my system.  Mind you, I’m probably not going to sample the oil until Monday, because I want a decent window in my schedule in case it gets me too relaxed!  Dystonia in my right foot is also more prominent on these settings – not enough to be truly uncomfortable, but enough to be annoying.  My balance seems a little better today, but I notice that my walking (when I was out walking the dog) is not great.

I brave the weather to replenish the log basket, and then light the fire.  I’m all for sitting by the woodburner for the afternoon, but my wife reminds me that we need to get some groceries, and she also wants to pop in to see her mum and dad.  So, I allow myself to be dragged out of the house (kicking and screaming) and we head off to Lidl in North Walsham.

After Lidl (which was packed – remind me not to go shopping on a Saturday in future!), we head off to Worstead to see my wife’s parents.  One chin-wag and a beer later, we emerge into the darkness (it’s 6pm) and head off home to have our evening meal, re-light the fire, walk the dog (it’s still raining, and she doesn’t want to go out in it) and then chill out in front of the telly (Netflix).

A lousy, uncomfortable, fractured night’s sleep.  At least, that’s my verdict!  My Fitbit says I slept pretty well, with only a couple of restless periods through the night.  I beg to differ!  Perhaps it just seemed like I was tossing and turning and thrashing around with dyskinesia in my right arm and leg (and yes, I did turn my neurostimulator down before getting into bed last night!), but I felt like I had been awake half the night.  My wife was up and out of the house before I got out of bed just after 8am.

I adjusted my neurostimulator to my daytime voltages,  drank my morning cuppa (kindly brewed by my wife before she left for work), read the Metro online, and then walked the dog before PopMaster.

I have been analysing my knee pain a little bit more – I have been suffering with a sharp pain in my right knee since changing from Group “A” settings to Group “B”.  I changed my settings back to Group “A” to see if the knee pain was settings-related, and had just about decided that it wasn’t, until yesterday…  I wrote that I had had a pain-free day yesterday, and I thought the same was true of today, but when I focus on my various aches and pains, then I notice that there is still some knee pain.  It’s not the “knife in the kneecap” pain that I was experiencing, but still there in the background all the same.  I’ll persevere with Group “A” settings for a little longer, and see if the pain will go altogether.

I don’t achieve very much today, and I’m feeling very lazy.  I do the bare minimum around the house – get the logs in, light the fire, empty the dishwasher, take the dog for (another) walk and vacuum downstairs – and spend the rest of the time surfing the internet and toasting myself in front of the woodburner.  Oh! I did put the recycling bin out for collection this morning, and brought it back in after the lorry had been (I know – big, fat, hairy deal!).  I don’t think it’s my motivation deserting me again, I think it’s just because it’s grey and cold outside, and so much nicer sitting by the fire.

My wife disappears off to work sharpish this morning – she’s combining a day of book-keeping for her soft furnishings business with keeping an eye on her eldest son (who lives next door to her workshop) and making sure that he doesn’t overdo things following his operation on Tuesday.

I slept well, only briefly waking around 4am, and again (for a visit to the smallest room) around 6am – I remembered to turn down the stimulation on my device (to 1.9v on the left, 1.7v on the right) before getting into bed last night, thus avoiding the uncomfortable dyskinesia that I experienced previously on these settings.  Importantly, I remember to set them back to their higher daytime values (1.95v left, 2.3v right) as soon as I get out  of bed, thus avoiding the tremor breakthrough that I experienced yesterday morning!

I have an email from the Polish website this morning, telling me that they thought my review was great.  I’m pleased about that – having made the video, I was going too publish it in any case, but if they hadn’t liked it, then I would have had to remove the credit to them for supplying the sample product!  I publish it on Youtube, and post links to my review video on Instagram, Twitter and Facebook.  It amazes me how quickly people start to view my work, and after just a few hours it has been viewed 100 times – quite amazing for a video which has (I would have thought) very limited appeal!

I was still suffering with a sharp pain in my right knee yesterday, and was on the verge of conceding that perhaps it wasn’t related to my Group “B” settings after all (I changed over to Group “A” a couple of days ago to see if that would affect it) – I resolved (yesterday afternoon) to stay on Group “A” settings for just another 24 hours before switching back to Group “B”.  Sitting here this evening, typing my blog, toasting myself in front of the woodburner, I suddenly realise that I haven’t had a single instance of knee pain today, and I’ve done all of the usual stuff – walked the dog twice, brought in the logs, lit the fire, vacuumed downstairs, emptied/loaded the dishwasher, been up and down the stairs – so perhaps it IS settings related after all.  It could be coincidence, but I’m not a great believer in coincidence – things usually happen for a reason, cause and effect…  I’ll be leaving my settings alone for at least a few more days now – see if knee pain returns.

I had an email from one of my blog readers this morning, enquiring about our dog, wanting to know what kind of dog she is.  I said I would put a picture of her on today’s post – so here she is, Willow the Black Labrador, who can also be found as a video star on my YouTube channel!

Slept well, and seemed much the same as usual until I got up and went downstairs.  I got a little stressed with sorting out a birthday card for my son – don’t ask me why, because I really don’t know!  Anyway, I went to the Southrepps Post Office, got a card and stamps and sat down on the sofa to write it.  Tremor came on big-style and took my handwriting, so I’m none too happy with my writing on the envelope, and even less so with my writing inside the card.  In fact  I had such a lot of tremor (and dystonia) that I had to check that I hadn’t turned off my neurostimulator by mistake.  I hadn’t, but I did think that the voltages (especially the right hand voltage) were on the low side (1.9v on the left and 1.7v on the right).  I vaguely recall setting my Group “A” settings to low values at night, the last time that I used them, and wonder if that’s the problem – only thing is, I can’t remember clearly!  Luckily I have this blog, the whole purpose of which is to record my settings and symptoms so that I can jog my memory, when required.  After a little bit of trawling through the archives, I manage to locate the post that logged my last usage of the Group “A” settings – I hadn’t realised it was so long ago!  I increase my voltages (to 1.95v on the left, and 2.3v on the right) and immediately the tremors and dystonia subside.  My balance is bad again (and was bad before I adjusted the settings) but at least I’m (still) not falling, just lurching and stumbling.  Dyskinesia is almost unnoticeable before I adjust my voltages, and seems no worse afterwards – I expect it’ll become more pronounced as the day goes on.  Mood, motivation and energy all seem pretty good, and I haven’t really noticed any fluctuation when I have been swapping between settings, which I’m happy about.

Donald Trump has won the US Presidential Election – I’m stunned, and indeed most people seem to be disbelieving.  Hold on tight – it could be a wild ride!  Let’s hope that he’s a better president than he has been as a candidate…

My wife leaves for work, and I decide to finish editing my video review of CBD Tea, which I started yesterday afternoon/evening.  Before sitting down in front of my MacBook for the day, I clean the woodburner out, fill the log basket and then light the fire (it’s another wet and chilly morning here in Norfolk).

I finish the edit, send a copy of the video to the Polish website for their approval, and upload it to my YouTube channel, ready to publish once it has been approved.

I give up waiting for the rain to stop, put my coat on and take the dog for a very wet and cold (and brief) walk.  I’m very glad to get back inside in front of the fire (and so is the dog!).

My wife’s eldest son is having an operation today, so she’s up early making tea and coffee and Nutriblasts before leaving the house to spend the day at the hospital.  I’m staying at home with the dog, but it’s going to be a waiting game for all of us today – waiting to hear that everything is ok, that the operation went as planned.

I walk the dog and then decide that I’m going to pass the day (and make the waiting more bearable) by reviewing the CBD Tea sent to me by the Polish website, and then making a video of the review.  I set up the camera, clear the area so that I don’t end up with unexpected items appearing on film where they shouldn’t, and take some stills and opening shots of preparing the tea.  Then I drink the tea, and wait for it to take effect before writing the review/script for the video.

Script written, I video myself reviewing the tea, and manage to do so with only 4 takes.

I keep thinking that the pain in my right knee is getting better, and then I get a particularly sharp stab to remind me that it’s still there.  I thought it got a lot better overnight (I changed settings to Group “A” yesterday), but perhaps it’s just wishful thinking.  I really don’t want to be on Group “A” at the moment – tremor control doesn’t seem as good as Group “B” (particularly in my right arm), and I also woke up with moderate lower back pain this morning, which is definitely settings related.  On the plus side, dyskinesia and dystonia are improved and my balance seems a little better today, although my walking is still fairly pants.  I’ll stick with it for another 24 hours or so, though, just to see if this knee pain is settings related.

I get the logs in from the back garden and then light the woodburner – it feels like Winter, and I like the cosiness it gives.

Another dog walk and still no news from the hospital.

I start importing the video onto my MacBook in preparation for editing, and get an update from my wife – all went well, thank goodness!  I open a beer in celebration (well, that’s my excuse) and chill out in front of the fire – editing can wait until tomorrow.

When I get out of bed this morning, it’s a bright and sunny Autumn day.  By the  time I’ve had my tea and Nutriblast, it’s cloudy and raining – perfect weather for dog walking 🙁

Back home in the warm and dry, I listen to Popmaster, and then decide to do some work on reviewing the CBD tea sent to me by the Polish website that I did my Interview video for.  I take some photos of the product on my iPhone, and then make a brew.  I take a few photos of the brew, and then I drink it.

The pain in my right kneecap is still there, so I’m going to change my settings over to Group “A” from the current Group “B” in a little while.  Tremor, dystonia, dyskinesia, mood, motivation – all pretty much the same as yesterday.  Balance and energy seem a touch better.

I load the log basket for the woodburner, and then decide to light it – it’s flipping freezing outside, and pretty damn chilly indoors.  It makes you feel warmer to just see the fire alight, and there’s a hypnotic quality to the flames.

The dog is gently suggesting to me that it might, just possibly, be time  for me to take her for her afternoon walk.  I wait for a break in the rain, and then take her for a run on the playing field by the village hall.  It’s particularly good to get back indoors today, and I top up the log basket before it gets too dark outside.

After dinner (a lovely green Thai curry) I change my neurostimulator over to Group “B” settings.  I’ll now monitor my knee pain (in particular) and other symptoms.  Time to pop open a little beer, and watch something on Netflix.

I decided yesterday that today was going to be a very lazy day of doing as little as possible and recovering from the last couple of days, which have been pretty hectic.

In line with this, we have a mega lie-in and don’t get out of bed until well after 11am – feels so decadent!  Even the dog wants a rest – she’s usually asking for her breakfast if we’re still in bed at 8am, but she stays asleep in her bed until she hears us getting up.

It’s definitely weather for staying indoors and doing nothing – it’s raining the kind of fine rain that gets you the wettest, and it doesn’t look like it’s going to stop any time soon.  My wife takes the dog for her morning walk (she doesn’t really want to go – the dog, that is, not my wife!) while I get some more wood in from the back garden, and light the woodburner.  All I want to be doing today is chilling by the fire.

I’m still very off balance (from time to time) and really think it’s related to me being tired, so I’m hoping it will improve over the next day or two.  I’m still suffering with this stabbing pain in my right knee, which I think might be related to my DBS – if it’s still a problem tomorrow, I’m going too change over from Group “B” settings to Group “A” for a little while, just to see if it makes a difference.  I have some left leg tremor again, and from time to time tremor takes over my right arm.  Dystonia is here in my right foot, but it’s no worse than yesterday.  Dyskinesia is also here in my right arm, but it only really bothers me when I’m getting up from the sofa (I do quite a good windmill impression), and I don’t intend to do very much of that today!  My mood and motivation are still fairly good.  Energy is a bit on the low side at the moment.

Aside from taking the dog out for her afternoon outing (in between rain showers), I remain sitting in the lounge, occasionally piling some more wood into the woodburner, and playing Jimmy Eat World, Twenty One Pilots and Foo Fighters on the Sonos system.  I truly have had a very lazy day…

I’m rudely awakened after less than 5 hours sleep – my son is calling me on my mobile phone.  Disaster!  He stayed in Southampton at his grandfather’s house after the Jimmy Eat World concert last night (rather than driving back to Dorset when he was tired), and  was driving back home this morning to go to work when he had an altercation with another vehicle on a roundabout in Blandford Forum (he pulled out in front  of another car) and wrote his car off.  He is (understandably) very upset.  I sympathise, but there’s very little I can offer (other than advice) from 250 miles away.

Once awake, I can’t get back to sleep – especially when my phone is ringing repeatedly with my son wanting to know my opinion on this and that (insurance, the police, getting his car recovered).  My wife and I decide to get out of bed and get on with the day.

I still have some left leg tremor, and some dystonia and dyskinesia on my right side, but my balance is definitely my worst symptom today – not sure if it’s just because I’m so tired, but I’m guessing that’s the case.  I also have a persistent dull headache that is definitely due to being tired.  We have to go out to Norwich to collect an item of shopping that we ordered online, and I really don’t feel up to it – we resolve to go out and do what we have to do today, and have a day of doing nothing tomorrow.

I have a sharp pain in the middle of my right kneecap, which makes itself known when I climb the stairs.  I have had it before, and always dismissed it as old age catching up on me.  I’m wondering now if it’s related to my stimulation (I never had it prior to DBS) – to be monitored!

I slept right through until 8.30 this morning, and feel nicely rested. I have left leg tremor on waking, and by the time I’m downstairs I have quite a bit of tremor in my right arm as well.  I’ll wait a little while before adjusting to see if things are going to calm down of their own accord.

My son and daughter have bought tickets for my wife and I to see Jimmy Eat World at the Guildhall in Southampton this evening, so we are driving to Southampton via Stevenage (to collect my daughter en-route) this afternoon, so I’m hoping that the Friday afternoon traffic is going to be kind to us.

Before we leave for Southampton, we have to drop our dog off at my wife’s youngest son’s house – he and his girlfriend kindly agreed to look after her while we are away – and then we brave the Friday afternoon traffic, which is heavy, but not as bad as I had feared.  Thankfully my wife is driving, so I relax in the passenger seat and manage to bring my tremor and dystonia under control again without having to tinker with the settings on my neurostimulator.

We pick my daughter up in Stevenage, and manage to get to the middle of Southampton and parked with the minimum of stress, although my balance appears to have suffered from sitting in the car for almost 7 hours (I have to cling to the side of the car for support for a moment or two when I get out).

The gig is brilliant, but all to soon we are back in the car and faced with the return journey.  We arrive home just before 3.30am and collapse into bed!

We are babysitting our granddaughter this afternoon, so the morning is spent preparing for the onslaught.  The stairgate has to be installed, as does the fireguard, and anything small and interesting has to be relocated out of a toddler’s reach.  The rug in the lounge has to be vacuumed and the kitchen and dining room floor tiles have to be vacuumed and washed.  My wife does her impersonation of a whirlwind while I sort out the stairgate, and before you know it we are ready for a small visitor.

We also have to pick my wife’s car up from the garage in Hevingham where it’s been having a multitude of problems sorted out.

Before going to pick up our granddaughter and my wife’s car, my wife walks the dog and then we go to Lidl in North Walsham to buy the makings of a vegetable lasagne (a speciality of my wife’s) for dinner tonight.

I drop my wife off at the garage, and then head back home to savour the calm before the storm.

Everything on the symptom front appears to be much the same as yesterday, apart from my voice.  I’m running out of voice before I run out of sentence, and the end result is that I am sounding a little bit strangled.  It doesn’t get any better as the day progresses, and by the time dinner time comes around I’m struggling with a weak and slightly slurred voice which very quickly runs out of steam.

I intended to try the CBD tea again today, but really haven’t had the time to brew up.  Tomorrow is another busy day, and I won’t be able to brew up because we are  going to be out in the car for most of the day.  Perhaps on Saturday…

I slept much better last night – co-codamol helped!  I woke this morning without the dreadful pain in my chest that I was suffering with yesterday, which is a relief.  By the time I’m out of bed and moving around I’m getting the odd twinge, but absolute peanuts compared with yesterday.

Tremor remains dangerously close to the surface (more on the right side than the left) and yet I dare not increase the voltage because of the dyskinesia in my right arm, which isn’t unbearable, but is close to being a damn nuisance.  Dystonia is the same – bearable, but close to being a damn nuisance!  I’m hoping that dyskinesia will recede and enable me to increase the voltage, which will help both tremor and dystonia.

I received a delivery late last night – a box of goodies from the Polish website that I did my interview video for, containing bottles of Charlotte’s Web and Olimax CBD oils and packets of CBD tea as well some key belts and badges – an impressive selection!  I take some photos to post on Instagram, Twitter and Facebook.  I spend some time on the internet, translating Polish (from the packaging) into English, and trying to make sure I know how to use the various items.  I’m going to try some CBD tea a little later on this afternoon, once I’ve figured out how much of the dried material to brew up with.

I take the dog out for her walk this afternoon – my walking isn’t quite so bad as yesterday, although it’s still a little bit wooden.  When we get back

indoors, I brew up some CBD tea – it tastes pleasant enough (given that I have no sense of smell, which affects how everything tastes).  I don’t notice any dramatic effect, but I’ll have another brew tomorrow and try making it a little bit stronger.  I think it’s likely to be a lot more subtle than when I self-medicate with cannabis in any case.

 

 

I hardly slept last night.  Well, actually, I did – it just didn’t feel like it!  I was awake many times during the night, in discomfort with this damned pain in my right chest.  Eventually (around 5am) I change my settings from Group “B” to Group “A” (1.9v on the left, 1.7v on the right), just in case this pain is related to my settings.  I manage a couple of hours sleep, and am awake again around 7am with dyskinesia in my right arm – now that’s definitely settings related!  I leave my device on Group “A” settings for the time being – the chest pain is still bothering me.

Downstairs, I’m finding it very difficult to initiate movement without squawking in pain like a baby.  I’ve decided that I must have pulled a muscle – probably while throwing the ball for the dog – it feels like muscle pain, nothing serious.  I change my settings back to Group “B” (2.15v on the left, 2.2v on the right) because Group “A” is causing dyskinesia and isn’t controlling the tremor in my right arm very well.

My wife drafts an advert for her soft furnishings business, to run in our local community magazine, The Mardler.   I take the dog for a walk/stumble (my walking’s not great at the moment).  Dystonia is also bothersome at the moment – I should probably increase the right hand voltage on my device, but I’m trying to let my settings settle for a while before making any adjustments.  My balance seems quite good at the moment, which is strange, because it usually goes hand-in-hand with how good (or bad) my walking is.

I go out to Bank Boats at Wayford Bridge this afternoon – I need to pay for the repairs that they have recently done to my boat – and then I pay my mum a visit in Stalham.  She seems a lot better than the last time I saw her (she has advanced Parkinson’s Disease), so that’s good!

I’m still struggling with the chest pain when I get home – I think I’ll take a couple of co-codamol after dinner, and then get an early night.

 

I slept better last night – sleep came quickly, and I didn’t wake until gone 6am.  My Group “B”settings weren’t causing me any issues – no dyskinesia to speak of, and my left leg tremor was minimal.  It wasn’t until I was downstairs, sitting on the sofa having my first cup of tea, that I noticed some muscle pain in my right chest.  It only manifests itself when I try to move after sitting still for a while, and it’s like a vicious cramp.  I can’t think of anything that I have done that could have brought it on, aside from changing my neurostimulator over to Group “B” yesterday.  If it persists, I’ll have to try switching back to Group “A” settings to see if that helps – it really is very painful!

My wife goes off to work, and I take the dog for her morning walk before my morning date with PopMaster.  I’m really not feeling like doing very much today – every time I move, the muscle pain in my chest takes my full attention.  I have a number of emails, messages and comments to reply to – a couple of people on Instagram want my help and advice on how to persuade their relatives (who have Parkinson’s Disease) to try cannabis to see if it will help with their symptoms, and there is a lengthy comment on my blog from someone who is approaching deep brain stimulation surgery and has a few questions for me.  I busy myself for a while, interacting with my readers – pleased to be of some use to somebody.  I fill the log basket with wood – it’s definitely getting a tad chilly in the evening now, and I do love having the woodburner going.

By the time my wife returns from work, I’m in quite a bit of discomfort with my chest, and also the dystonia in my right foot is making its presence felt.  After dinner, I try a little self-medication (cannabis) to see if that helps matters.

My wife is going swimming with our granddaughter this morning, so the dog and I have the house to ourselves.

I slept reasonably well again, with reduced voltages and a little cannabis to help things along.   It took me a little while to get off to sleep because my left leg was restless – I eventually increased the voltage on my left side in an attempt (partially successful) to calm it down.  When I woke, I was in quite a bit of discomfort because of dyskinesia in my neck – cause and effect…  I decide to change  over to my Group “B” settings for a while and see how I feel.  I leave the voltages alone for the time being (2.15v on the left, 2.2v on the right).  Tremor seems quite well controlled, but feels quite close to the surface on my right side – the dystonia in my right foot is also a little bit worse.  Dyskinesia is still afoot, but it’s manageable.  My balance feels a little better, but I notice my walking is not so good when I take the dog for her morning stroll.

My wife returns from swimming, and then we are off out to Norwich to go shopping with her youngest son and his girlfriend – It’s good to get out of the house and breathe some city air for a change (well, it’s good to get out of the house…).   Then it’s a quick visit to my wife’s workshop in Hevingham to load her car with fabric samples and the paraphernalia of her trade – she has an appointment in the morning to measure up and quote for some curtains.

Tremor is still well under control on my left side (for a change), but my right side is less good.  If it weren’t for the dyskinesia, I’d be tempted to crank the voltage up by a click or two.  Bedtime is looming, so I self medicate (cannabis) and leave my settings be – at least for the time being.

I had another decent night’s sleep, not waking until 6.30 to go to the smallest room, and then getting back to sleep for another 2 hours.  I have a hefty amount of tremor in my left leg, so turn my neurostimulator back up to it’s daytime voltages (1.95v on the left, 2.3v on the right).  Things calm down a little on the tremor front, and I get up, get dressed and go downstairs.

It’s the weekend, which means I feel like a bit of a spare part while my wife does her impersonation of a whirlwind – stripping the bed, doing the washing, cooking food to take over to her eldest son’s this evening (we are invited to dinner, so my wife is making desserts and a salad), cleaning, etc. etc.  In the midst of doing all of the above, she takes the dog for her morning walk and then goes for a half hour run..

While she’s out having her run, I decide to give my hair a bit of a trim (before she cleans the bathroom), so out with the clippers, and 15 minutes later I have a grade one buzzcut – nice!  I clean up after myself, and then adjourn to the back garden, where 2 rather large piles of dead leaves await my attention (thankfully there’s still no wind here, otherwise my leaf piles would have been redistributed).  I scoop them up and bag them, and then break all the rules by putting the bags of leaves in the bottom of my wheelie bin and plonking a sack of household waste on top of them.  I fill the log basket from the pile of wood that’s stacked against the wall in the back garden, and then figure I need a rest.

The dog reminds me that she’d very much like to go and chase her ball, so I take her for her afternoon walk, and throw the ball for her like the obedient human that I am.  Dyskinesia is still making it’s presence felt, but it isn’t so severe as it was yesterday.  Dystonia is still under wraps, which is brilliant.  Balance doesn’t seem quite so bad, but I still think my walking isn’t great – it does vary throughout the day, though, so perhaps I’m being a little too critical.  Mood is ok, motivation is ok, energy is pretty damn low!

I slept right through last night.  I woke up while it was still dark, thinking it was 3am or 4am – a quick glance at the alarm clock revealed it was almost 7.30am!  I turned my neurostimulator down last night, before getting into bed – 1.5v on the left and 1.7v on the right.  I also self-medicated with cannabis.  Something obviously worked because I got off to sleep without trouble, slept right through without being woken by dyskinesia, and feel much better this morning (apart from the ever present tremor in my left leg).  I restore my settings to their previous values (1.95v on the left, 2.3v on the right) and then I’m ready to face the day.

I’m not sure what to do today.  Now that the latest video has been published, there’s a bit of a void.  There are plenty of jobs waiting to be done around the house, but nothing that doesn’t require major disruption, and I can do without major disruption at the moment.  I end up bringing the wood in for the fire and building the fire for lighting this evening, and then sweeping up (the majority of) the fallen leaves in the back garden.  I just leave them in a big heap for the time being, and hope the wind doesn’t get up and blow them all over the place again before I’ve had a chance to bag them up and put them in the bin!  I’m thinking of another couple of DBS videos that I’d like to do, so perhaps I can get on with scripting those next week – all of this video work isn’t getting the house finished, but it is giving me some sense of purpose.  I feel as if I’m struggling a little with my motivation, but I am still managing to get stuff done, and that’s the main thing.

My left leg tremor is persisting, and I also have (from time to time) some tremor in my right arm.  Dyskinesia has got quite a bit worse since I set my voltages back up this morning.  I’m almost (but not quite) throwing my drinks around as I raise them to my mouth – not quite bad enough to make me change my settings again.

I intend reducing my voltages again at bedtime, and also self-medicating with some cannabis – let’s hope it’s as effective tonight as it was last night!

My wife had a lousy night again, and that meant that I also had a restless and disturbed night.  I’m definitely going to be self medicating (cannabis – and probably alcohol, too) tonight.

My wife disappears off to work, and I do the usual dog walk and PopMaster, and then sit myself down at the computer to finish editing my video.  I finish the sub-titles and then double check that the words on the screen match the words that I’m saying (they don’t, and I make the necessary amendments) and that the words on the sub-titles are all spelt correctly (they’re not, and I make the necessary amendments).

My wife’s grandma has had a comfortable night, and they are going to get her up and walking today – It’ll be such a relief if she makes a good recovery from her fall; I know that my wife is really stressed about it at the moment.

My tremor seems a little stronger today (left side and right side) but it’s more than likely down to stress rather than any failing of my DBS to keep things in check.  I’m certainly not about to make any changes right now.  Dystonia is also a little more noticeable, but I’m coping.  Dyskinesia is mostly not too much of a problem – I just tend to windmill about with my right arm when I’m getting up from the sofa, which is probably amusing to watch, but isn’t really very funny from my perspective…

Before I know it, it’s 4pm, and time to take the dog out again before it starts to get dark.  When I return, I publish my video “Deep Brain Stimulation (DBS) Side Effects” to YouTube, put links to it on my Instagram, Twitter, and Facebook accounts, and then post messages in the various Parkinson’s Disease/DBS groups on Facebook and Yahoo Groups.  It’s amazing how quickly the video starts being viewed by people, and the comments start to come thick and fast (positive comments, by and large).

We eat dinner, chill with a beer or two, and then I self-medicate and get myself into bed – hoping for a better night tonight!

It’s our 3rd wedding anniversary today, but there’s really nothing to celebrate…  My wife’s grandma (she was 100 years old this year) had a fall last night and broke her hip, so now she’s in Basingstoke hospital and due to have surgery this afternoon.  My wife is worried sick, as you can imagine.

I re-arrange the lounge and dining room this morning, trying to create a space for me to film my “DBS Side Effects” video.  Then I spend a couple of hours filming take after take after take – wide angle and close-up.  I import the video to my MacBook, and make a start on the editing process.  I had hoped to be able to publish the finished video today, but then I’m always optimistic – I tend to forget how long these things take!  The day passes in a blur, and it’s soon time to take the dog for her afternoon walk – the evenings are really closing in now, and this weekend the clocks go back an hour – next week it’ll be getting dark soon after 4pm.  By the time my wife gets home from work, I have finished the basic edit – it just remains for me to watermark the video (so that people don’t just steal it and brand it as their own – live and learn!) and then sub-title it (because I feel that my voice can be a little difficult to understand).  I concede defeat around 9pm, and will finish it off and publish it tomorrow!

I had intended booking us a romantic anniversary meal over at The Vernon Arms this evening, but my wife just doesn’t feel like celebrating at the  moment – and I can’t say that I blame her.  We have a Lidl paella, and crack open a bottle of beer – the champagne will keep for another day.

Not quite such a bad night last night – I certainly woke up a few times and I certainly had some dyskinesia, but I felt relatively well rested when I woke just after 8am.

We are having our granddaughter here for the afternoon, so I plan to film a couple of shots that I have in mind for the “DBS Side Effects” video before she arrives.  I want to get some footage to illustrate my balance issues and my walking, and since these are both pretty rubbish at the moment, I resolve to do that before they suddenly improve!  I know that my balance is most noticeable (to me) when I am climbing the stairs, so I set the camera and tripod up at the top of the stairs and film a couple of takes of me coming upstairs and using the wall for support.  I think I notice my walking the most when I take the dog for her walks, so I venture onto the streets of Southrepps (which are, mercifully, quiet this morning), set up the camera and tripod in the lane which leads to the village hall, and film myself walking up and down the lane (from several different angles).  I should be able to get something usable from that.

Dyskinesia has receded slightly since yesterday, and tremor has returned (slightly), principally in my left leg.  I’m going to leave well alone, though, because I don’t want to make any changes that will impact on me negatively.  The dyskinesia is a nuisance, but I can deal with it.  The tremor is bearable.  Everything else seems pretty stable at the moment.

Our granddaughter arrives, and while my wife is keeping her entertained, I import this morning’s video onto my MacBook.  Not a lot else, video-wise, is going to get done today!

It’s our 3rd wedding anniversary tomorrow, and I haven’t had a chance to get out to the shops on my own recently, so I disappear off to North Walsham to buy a gift, card and flowers while my wife slaves over a hot stove preparing our evening meal.

I had a lousy night’s sleep.  Self-medication helped me get off to sleep without too much trouble, but I was awake and restless many times during the night, and thrashing around a bit with dyskinesia in both my right arm and my neck – most uncomfortable!

My wife is up and out early – she’s babysitting our granddaughter today and has to be in Hevingham (20 minutes away) by 8am.  I get up at 8am, wander downstairs and make myself a cup of tea.  I’m glad I didn’t muck about with my settings yesterday (which would have resulted in my increasing the voltages) because I think my dyskinesia would have gone through the roof.  It’s certainly worse on Group “A” settings than it was on Group “B”.  Tremor control does seem a little better, though.  Dystonia is very slightly worse, but definitely bearable.  Balance and walking are still a bit rubbish, but I’m not tripping or falling, just stumbling from time to time.  My mood is slightly better (I’m not quite so withdrawn) and motivation has also improved.

I take the dog for her walk, listen to PopMaster and check email and social media – my video is doing well, over 600,000 views now.

I remember one or two additional details that I wanted to include in my “DBS Side Effects” video, and spend some time researching it on the internet, and then making adjustments to the script that I have already  prepared.  I had intended doing some filming today, but my wife has returned with our granddaughter, so my “studio” (the lounge) is scattered with toys and various baby paraphernalia, so it will have to wait until another day (tomorrow?).

Evening rolls around.  I’m still suffering with dyskinesia, but I’m coping with it so I don’t think I’ll turn the voltages down (just yet).  I light the woodburner (it’s definitely feeling Autumnal), and think about a little self-medication…

I checked out the ATTN: Facebook page this morning to see if they had published the video story about me – they said they intended to do so over the weekend.  Sure enough, I found it a couple of pages down from the top.  It’s an edited version of my original Parkinson’s Disease Tremor Control video, with some additional images, and a few seconds of footage taken from the Skype call which we had on Thursday evening.  It hasn’t been published for 24 hours yet, and already it has had almost half a million views and been shared more than 10,000 times – looks like I’m going viral again!  I post links to my Facebook pages, Instagram and Twitter, and then spend some time reading the comments and replying where necessary.

Tremor is more pronounced this morning, both in my left leg and my right arm.  Everything else (dystonia, dyskinesia, balance, walking, mood, motivation, energy…) seems pretty much the same.  I decide to switch programs back to my Group “A” settings and see what happens.  I feel a good old tingle on my left side as the other program kicks in, but other than that, there doesn’t appear to be any immediate change.  Half an hour later, I notice that tremor has all but disappeared from both my right arm and my left leg, which is brilliant!  I will just have to wait and see if it comes back once my brain has become accustomed to the change in stimulation.  I’ll leave the voltages alone (left side 1.95v, right side 2.3v) and adjust them later, if necessary.

We go out to dinner at my wife’s youngest son’s house in Hevingham, and get to see our granddaughter at the same time, so that’s a bonus.  My tremor remains fairly well controlled, so I don’t make any adjustments to my device.  Let’s hope my sleeping is good, too.  I mildly self-medicate with cannabis when we get back home, just to ensure I can get off to sleep without any trouble.

I wake with the usual left leg tremor.  I know I won’t get back to sleep again, but it’s Saturday and I’m having a lie-in.  I eventually crawl out of my pit at 9.30am.  The sun is shining, although there are a few ominous looking dark clouds.

My wife takes the dog for a walk, while I drink my tea and Nutriblast and check my email.  I still have a little dystonia in my right foot, and dyskinesia in my right arm, but tremor is well under control on my right side.  There is still some left sided tremor, but only in my leg, and it’s manageable.

We got out to Lidl in North Walsham to get some groceries – my wife remarks that my walking seems a little better, and I’m more upright than I have been lately.  She also thinks that I’m a little subdued, and she may be right.  I don’t feel particularly “down”, but neither do I feel particularly “up”.  Mood is something I really need to be aware of, because I don’t want to get back in the rut that I was in just a few weeks ago.  It may, or may not be to do with my device settings – that’s what is so difficult to determine.  It could just be that I’m having a few off days with my Parkinson’s Disease, and that I’ll be fine again in a day or two without the need for any intervention.  Conversely, it could be my device settings, and things won’t improve until I adjust them.  Nobody knows.  Not even the experts.  Everything is trial and error – suck it and see.

I’ve decided to try to make some progress with my video script today, but won’t be beating myself up if I don’t manage it.  I decided (following some remarks from my wife) that I’m putting myself under unnecessary pressure to meet a deadline that only exists in my head.

I manage to finish the script this evening, and my wife checks it over and approves.  Now I just have to shoot the video – Monday or Tuesday, while my wife’s at work and I have the house to myself.

I’m awake before my wife’s alarm goes off at 7.30am, but I don’t get out if bed until 8.30am.  I had a reasonable night’s sleep, aside from a little difficulty in actually going to sleep (in spite of some mild self-medication).  Left leg tremor is present, dystonia in my right foot is noticeably worse, as is dyskinesia in my right arm.  My voltage settings on Group “B” are much lower than the last time I used them, so I increase them to the maximum allowable (2.15v on the left and 2.2v on the right) to stop the tremor and dystonia – if dyskinesia goes through the roof, I’ll have to re-adjust later.

Downstairs, I grab my morning cuppa and Nutriblast (courtesy of my darling wife), give the dog a brisk walk around the village hall playing field and then get ready to go out – I am picking up some fabric sample books from Norwich for my wife’s business this morning.

PopMaster (in the car), a quick trip to Asda to stock up on some fabulous St Peter’s Cream Stout, and then I collect the fabric sample books and deliver them to my wife’s workshop in Hevingham.

Back home, I email the news agency that interviewed me yesterday offering to do a 2nd take – I’m convinced that they won’t be able to use very much of the footage they shot last night…  I seemed to be very slow responding to questions, and my speech was halting, which wasn’t helped by the shed-load of tremor that the stress of the situation brought on.  I’ve been researching the side effects of DBS for my video, and think that I do have some (mild) cognitive impairment – my thought processing speed and speech fluidity are not what they once were.  I hope this isn’t going to get worse.  On a more positive note, I had an email from the Cleveland Cannabis College about the script that I sent to them a week ago for approval – they were very happy with it, which is a relief!

I’m still slightly concerned about my motivation, because I haven’t done anything about progressing the script for my new video, although I don’t feel at all negative about it.  It’s something that I really want to do, and the content  (so far) seems pretty good, but I’m just not getting on with it!  Tremor is still there in my left leg, so is dystonia in my right foot – both seem slightly better since I changed my settings this morning.  Dyskinesia hasn’t increased substantially, which is a plus!  To be monitored!

I start the day with every intention of knuckling down and finishing my video script, but the day doesn’t start well.  My wife is still battling technology and trying to post online adverts for her soft furnishings business on various Facebook pages and internet newsgroups, so I abandon hope of making progress until she goes over to her workshop in Hevingham to take some product photographs for the website – but that’s okay, there’s still plenty of time.

I still have a fair amount of tremor on both sides of my body (but mainly on my left) and I still can’t decide what to do settings-wise – do I increase the voltages on my Group “A” settings (and risk dyskinesia increasing) or do I change over to Group “B” settings and see how they affect things?  I’d be more inclined to increase the voltage on Group “A” if it weren’t for the fact that dyskinesia is a little bit stronger today.  I take the dog for her morning walk, and note that my balance and walking are still fairly pants.  So, when I get back home I decide that I shall change my device settings to Group “B” if things haven’t improved by this afternoon.

I’ve received an email from another American news agency, wanting to use my “Parkinson’s Disease Tremor Control” video, and also wanting to chat to me on Skype.  I email them back and refer them to the news agency that is handling the licensing of my video.  They sound very keen, and I suspect I’ll be hearing more from them later on today.

I change my neurostimulator settings from Group “A” to Group “B”.  I get the usual tingle and “Wow” feeling as the different program is loaded, but no great feeling of being tremor free – in fact, if anything, it’s worse!  I check the voltages, and I’m getting 1.75v on the left, and 1.8v on the right, so much lower than the last time I used Group “B” (10th October, when I last went to the NHNN for a tune-up).  I’ll give them a few hours to settle in before making any adjustments.

I’m still not walking very well when I take the dog for a walk this afternoon – no improvement whatsoever.

The American agency that messaged me earlier have been back in contact – they are going to use my video, and also want to record a video interview on Skype.  When they call me late this evening, I get quite stressed, and tremor comes flooding back big time.  I hope I didn’t appear to be a complete gimp.  After the call, I self-medicate with a little cannabis – perhaps I should have done that during the interview!

I really did have a disturbed night last night – my Fitbit confirmed it!  I was wide awake at 1.30am (and so was my wife, so I think that I had a disturbed night because she wasn’t sleeping), and then restless time and time again through the small hours.  I woke to my wife’s alarm at 7.30am and managed to snooze until 8.30am, when I got up and got dressed.

My wife is having a bit of a lull in business at the moment, so is spending her time delivering leaflets, posting on Facebook, and updating her business webpage.  Delivering leaflets isn’t a problem, it’s the technology related activities that cause the stress – she really doesn’t get along with computers.  I learn a whole new vocabulary of swear words whilst sitting next to her on the sofa while she’s trying to update pictures on the website and post advertisements to a number of Facebook pages.  It’s a relief when she finally finishes and gets ready to go to Hevingham to babysit our granddaughter for the afternoon.

I was hoping to finish the script for my “DBS Side Effects” video today, but it’s just not going to happen.  There are a number of problems that my wife encountered during her “morning of stress” that I need to sort out for her, and those take priority!  To add to the fun, it’s chucking it down with rain again, and I need to keep an eye open for a break in the weather so that the dog can have her exercise.

I’m still getting tremor on my left side (mainly my leg), but it isn’t so bad that I need to alter my device settings – I’m trying not to adjust it too frequently – I think my symptoms vary on a daily basis in any case, and trying to chase them by changing my neurostimulator settings is muddying the water.  My other symptoms seem stable enough, and my dyskinesia may even have decreased a little bit, all on it’s own!

I do, eventually, get around to writing some more of my script, and I’m resigned to not completing it today – will aim for tomorrow evening instead.

I thought I had a very disturbed night’s sleep, but my Fitbit begs to differ.  I recall being awake a multitude of times, but it seems I was wrong – I actually had a brilliant, undisturbed night of sleep until just after 7.30am, when I tossed and turned until I finally got up at 8am.  I guess my recollection of a disturbed night is solely based upon that final 25 minutes or so…

I’m determined to write the script (or at least make a start on it) for my “DBS Side Effects” video.  I drink my tea and Nutriblast, and start going through my notes.  It’s a miserable, gloomy day here in Southrepps; pouring down with rain, which doesn’t look like it’s going to stop any time soon.  The dog keeps her head down – she never wants to go out when it’s raining.

I make sure that I don’t miss PopMaster today, and then a little while later the rain stops, the sun comes out and the dog looks at me expectantly.  Wellies on, the dog (not wearing wellies) and I trudge around the soggy playing field by the village hall.

When we get back indoors, and I’ve towelled the dog dry, I get on with the task of scripting my video.  My tremor is still being a bit of a nuisance, but my adjustments of yesterday seem to have had some sort of effect, because it has certainly improved.  I might be tempted to increase the left hand side voltage a little more later on…  Everything else seems pretty stable – no changes in dyskinesia or dystonia, balance or mood.  My motivation appears to be a little better today – whether that’s due to the change in voltage or not is anyone’s guess.

I have, at least, made a good start on the script.  I haven’t done as much as I had wanted to, but at least it’s a start…

I’m really annoyed with myself this morning.  I still have a lot of tremor in my left arm and leg, so I’m a little bit on the grumpy side to start with.  I’m checking my Facebook, when I notice a post from an old friend of mine about a gig that she went to last night at The Brook in Southampton.  It reminds me that my wife bought me some tickets for my birthday (in May) to go to see UB40 at the UEA this October.  I’m sure that I put a reminder on the calendar of my phone so that I’d be alerted to the concert a couple of days beforehand, so I’m not all that concerned.  I Google the gig to see when it is, and it was last Tuesday!  I can’t believe it!  I’ve never bought tickets for a gig before, and then forgotten to go!  I hate it that I missed the gig, but I hate it even more that the tickets simply went to waste – I hate waste!!  I check my phone calendar to see why I hadn’t been alerted to it, and I evidently forgot to put a reminder on there…

I take the dog out for her walk – perhaps the fresh air and exercise will make me snap out of it.  It doesn’t.  I’m still feeling out of sorts when I get back home.

I have a parcel collection (a box of British goodies for my brother, who lives in Nova Scotia) and a parcel delivery (a free box of food from Hello Fresh) this morning, and I manage not to miss either of them while I’m out walking the dog, so that’s a bonus!  I notice the time, though, and see that I have missed PopMaster this morning, and that annoys me as well – I hate it when my routine is disrupted!

I feel that my motivation is missing – I just sat on my backside today, and didn’t do or achieve anything.   The only time I did do anything, it was because the dog nagged me to take her out for her afternoon exercise.  I did manage to make dinner, though – although it was because I felt obliged to do so, having ordered the box of food from Hello Fresh.  My wife was very pleased to come home to a meal for a change, rather than having to prepare food the moment she gets through the door from work.  I had wanted to do some work on the script for my “DBS Side Effects” video, but have done absolutely nothing towards it – maybe tomorrow.  If I still feel this way tomorrow, I’m going to try changing over to Group “B” settings.

Slept well (must have been due to all the wine I drank last night!), and didn’t waken until almost 9am.  Immediately it’s evident that I have a lot more tremor this morning.  I’m also feeling incredibly tired, in spite of my good night’s sleep.  Dyskinesia in my right arm was a little more pronounced last night, while our guests were here.  This morning it’s also more of a problem than it has been lately.  Dystonia, balance, mood, all much as they have been.  Energy – I’m whacked!  Motivation – I just don’t feel like doing anything

My wife is off swimming with our granddaughter this morning, so I sit on the sofa, check my email, and do very little else (although I do manage to take the dog for a walk) for a couple of hours.  I’m struggling to contain my tremor, and it’s a battle that I’m losing.  Generally my tremor is fairly close to the surface, but manageable.  My left leg, though, is a different matter.  I can’t seem to keep it still for more than a handful of seconds, and it’s driving me mad.  Should I adjust my neurostimulator?  Should I self-medicate with some cannabis?  I’ve been avoiding any device adjustments because I have been worried about increasing my dyskinesia.  My dyskinesia is solely in my right arm at the moment, and this is related to the right hand side setting on my device.  Right sided tremor isn’t the problem right now, so I could (in theory) adjust the voltage on my left side up a notch to try to calm my left sided tremor without affecting the right sided dyskinesia.  My wife arrives back home, and asks me how I’m feeling.  In response, I raise the voltage on the left hand by two notches (0.1v) – so now I’m getting 1.95v on the left side, and 2.3v on the right.  I feel an immediate improvement.  It isn’t perfect, but it’s an improvement.  I resist the urge to increase the voltage a little more – I’ll give it 24 hours to settle.  If I’m still struggling tomorrow lunchtime, I could always try switching from Group “A” settings to Group “B” – perhaps using a completely different program will help.  Let’s just wait and see.  In the meantime I’m having a beer (medicinal!) and some cannabis (medicinal!).

I’m awake early again – 5.30am, and can’t get back to sleep again.  I lie awake, resting, until almost 8am.  My wife isn’t feeling too bright this morning, so I get up and leave her to sleep on for a while.

Everything, symptom-wise, is pretty much as it was yesterday.   Tremor is under control in the main, although it is fairly close to the surface.  Dystonia – manageable.  Balance – ditto.  Dyskinesia – ditto.  Energy and mood seem okay, and I’m still keeping an eye on my motivation.

We have dinner guests tonight, and I want to get started on preparing the food (so that my wife doesn’t end up doing everything), so I start off by reducing a packet of Digestive biscuits to crumbs, and make the biscuit base of the banoffee pie that we are having for dessert.  I struggle a little with spreading the biscuit mixture into the dish that I’m using, because any rhythmic movement presents me (and a lot of other Parkinson’s Disease sufferers) with difficulty.  I make a reasonable job of it (eventually) and bung it into the fridge to set.  Next on the agenda is the Thai green curry, which shouldn’t present too much of a problem (initially), but might be more of a problem when I need to cut the chicken and vegetables up later.  By the time my wife puts in an appearance, things are well under way – I even manage (with great concentration) to cut up the chicken and vegetables without cutting myself in the process – result!!  I finish assembling the banoffee, and then take the dog out for her afternoon runaround.

I’m still contemplating a change to my settings.  And I’m still hesitant.  I don’t want to upset the status quo.  I’m going to leave well alone (again) and just see what happens.  I self-medicate (mildly) with cannabis before our guests arrive – hopefully it’ll help me contain the tremor, and relax a little more.

I’m awake just after 6am – minor back pain, minor tremor (left leg), minor dyskinesia (right arm).  I can’t get back to sleep, but still manage to remain in bed for over 2 hours.  I get up and head downstairs for my cup of tea (I heard my wife putting the kettle on).

I’m a little concerned that my motivation may be affected by my latest settings, but perhaps I’m just tired and still recovering from our day in London on Monday.  Nevertheless, I need to keep an eye on it – I can always revert to my Group “B” settings, which are basically the same as prior to my tune-up (just a couple of very minor adjustments).  My wife hasn’t said anything yet, and she usually sees issues with my settings before I do.  My tremor is a little close to the surface at the moment – mostly well contained, but liable to break out without any warning.  Dystonia has calmed down again after yesterday, when it was a proper nuisance.  Balance is much the same (a bit pants), but generally I’m not too bad at the moment.

The reason I’m questioning my motivation is because I have a lot of work to do on my next video (Side Effects of Deep Brain Stimulation), but I keep putting it off.  I have collected loads of data from various online sources (Facebook pages and a Yahoo Groups Forum), and the next step is to take that data and incorporate it into a script for filming.  I keep finding other things to do.  Today I’m clearing some of the mess that I left in the conservatory following my woodwork attempts of several weeks ago – stacking the wood up into a neat pile, and putting the tools away.  Then I decide to light the woodburner (it’s distinctly chilly here today, and Summer is most definitely over) so I bring in some wood from outside, get the stove fan out of the loft, and stack the kindling  in place.

I vacuum up the debris that came into the house when I brought the wood in, and then light the fire.  By the time my wife comes in from work, the house is nice and cosy, and dinner is in the oven.

I still haven’t tweaked my settings.  The emerging tremor would indicate that some additional voltage is required, but I’m pretty sure that additional voltage will also mean additional dyskinesia, and since both tremor and dyskinesia are manageable at the moment, I’m inclined to just let things be.

I had another good night of uninterrupted sleep, and woke up just before 8am with a fair amount of lower back pain (but not as bad as yesterday!).  Some tremor, some dyskinesia, but overall I can’t complain.  I still haven’t fiddled around with my settings following my device re-programming on Monday, but I might be tempted to do so later on today.  I have more tremor on the right side than the left, for a change – although it is intermittent and not too severe.  Dystonia in my right foot is also more prevalent than it has been for several weeks, so perhaps an increase in voltage on the right side would be in order…

I drink my morning cuppa and Nutriblast, walk the dog, listen to PopMaster, and think about going to North Walsham to do some food shopping (we are having friends over to dinner on Saturday evening, and I need to get the ingredients for a green Thai curry and a banoffee pie).  I also need to go to Wayford Bridge and pay Bank Boats for repairing my boat.

The weather is obviously too miserable for Bank Boats to open today, and I leave without paying my bill for the second time this week.  Lidl in North Walsham is absolutely packed, and I whizz round with  my trolley as fast as I can – I hate crowded shops!   Next stop is Sainsbury’s for a couple of things that I couldn’t get in Lidl, and then I’m homeward bound.

I receive a message from the webmaster of the Polish Medical Marijuana website when I get home.  She has published an article on me about my  use of cannabis to calm my Parkinson’s Disease symptoms.  I have a quick look, and it looks good.  I’m not quite sure what it all says, but it looks good!  I post links to the article on my Instagram, Twitter and Facebook pages.

It’s approaching bedtime now, and I still haven’t adjusted my settings – I’m a little bit afraid of making my back pain worse, or increasing my dyskinesia.  I’ll see how I feel tomorrow…

I slept much better last night – self-medicating with cannabis yesterday evening made sure that I dropped off to sleep quickly when I went to bed.  I woke a couple of times, but went straight back to sleep.  When I woke around 8am, I had quite bad lower back pain, but at least I didn’t have the violent dyskinesia that has accompanied it in the past.  I had no tremor, and my dystonia was virtually unnoticeable.  I got up, got dressed, got myself moving and the back pain was soon a distant memory.

I posted a question to various Parkinson’s Disease and DBS pages on Facebook a few days ago, asking people who had undergone Deep Brain Stimulation surgery to document any unexpected side effects from having the procedure.  The idea is to gather all of this data, and make a video cataloguing  the various effects and side-effects as a resource for people who may be considering having DBS – I was unable to readily find this information before I had my operation and, although there is nothing that could have stopped me from having the surgery, it would have been nice to have been a little better informed.  Luckily, I haven’t had any really bad side effects, but if I had, then I think it would have been nice if I had been warned about them beforehand.  I find it amazing that people have had such appalling side-effects (even ones which they haven’t been warned about) and yet when I ask the question “If you had to make the decision again, would you still have DBS?” the response (generally) is a resounding “Yes!! It’s changed my life!”.  It just shows how poor their quality of life must have been prior to surgery.

I feel incredibly fortunate to have had this surgery, and to have greatly improved my tremor without sacrificing my vision, or my voice (too much), or my balance (too much), and to have also improved my bradykinesia, my mood and my motivation.

I didn’t have a great night’s sleep, in spite of being incredibly tired when we got home last night (at about 11.30pm).  It took me ages to get off to sleep, and then I was awake from about 5am, and quite uncomfortable.  Although I didn’t have the severe back pain that I have experienced from other device settings, I did have some discomfort.  I also have some dyskinesia in my right arm, and tremor in my left side (both arm and leg) this morning – it comes and goes…  I think I’m going to leave my settings be for at least the next 24 hours and see if letting them settle will alleviate the side effects.  I’m currently using Group “A” settings (which is a completely new program) and receiving 1.85v to my left side, and 2.3v to my right side.  Group “B” settings are basically the same as they were previously, apart from a change in frequency from 160Hz to 180Hz, and a wider window of adjustment so that I have more tweaking flexibility.

I have quite a lot of stuff to catch up on.  I email the Parkinson’s nurse with details of my videos on YouTube (because she hasn’t seen them yet).  I email a selfie over to the webmaster of the Polish Medical Marijuana website (because he needs a photo to publish with an article that he is writing about me).  I download the DBS programming video (that my wife filmed at the NHNN yesterday) onto my MacBook.  I enter the required passenger information into our flight reservations for our holiday.

Tremor still there.  Still a bloody nuisance.  Dyskinesia has calmed down.  Dystonia is under control.  Balance is a bit pants, but I’m coping.  Mood and motivation still seem good, and my energy levels are better than I expected following our long day yesterday.  My speech is much improved.  One of the speech specialists on the DBS team at the NHNN commented on how strong my voice was, following my reprogramming session.  She was amazed to find out that I’ve had Parkinson’s for over 20 years, and that I’m not taking any Parkinson’s medication.  It’s very encouraging when you get that kind of reaction from someone who sees Parkinson’s patients every day of the week!

I have a stab at writing a script for the video that Cleveland Cannabis College want me to film for them, and email it across for approval.  Then I self medicate with a little cannabis, and crack open a bottle of Hobgoblin!

A long day lies ahead.  My wife and I have a 9am appointment with the Parkinson’s nurse in North Walsham, and then we have to catch the train into London for a tune-up appointment at the NHNN this afternoon.  We arrive in plenty of time to see the Parkinson’s nurse, and she’s very interested to hear about my viral video and subsequent updates. A far cry from the response from Parkinson’s UK, whose immediate response to my posting a link to the video on their forum was to delete it.  They did, eventually, reinstate it, but only after I “outed”them on Twitter for censorship.

Next stop, North Walsham train station, and before you know it, we’re on our way to Liverpool Street station.  We travel first class, because it’s only as few quid extra, and you get free coffee and biscuits, and free WiFi.  Only problem today is that the WiFi isn’t working!  Just as well we have our phones with us and can use the phone network to access the internet!  We arrive in London on time, and roll up for my appointment at least 5 minutes early – a new record!  We have brought a little video camera with us today, in the hope that the DBS nurses will allow us to film me having my device programmed.  They make a few remarks about my Parkinson’s Disease Tremor Control video (in good humour) and allow us to film the programming session, which is great.  Not yet sure where I’m going to use the footage, but I’m sure it’ll come in useful.

My son and his girlfriend are travelling through London today, catching the Eurostar to Paris. We manage to meet up at St. Pancras station after we have finished at the NHNN and we have coffee and a chat before they go on their way.  While we are wandering sound killing time until the Blues Bar opens, I notice some tremor emerging, so we decide to return to the hospital for some adjustments.  This time we get a different programmer, and there’s some confusion over exactly what has been done at the previous session.  Luckily we managed to figure it out, and adjustments are made which send the tremor well below the surface.

Of to the Blues Bar, via Subway, and we are ready for a beer or two and some quality music. We are in for a shock.  I’ve seen some amazing musicians at the blues bar in the past, and I’ve seen some fairly average ones. I’ve never before felt like walking out, as I did today – it was almost painfully bad. In the end, we left early and went to McDonalds to get a couple of McFlurrys on the way back to Liverpool Street station. Very disappointed!

We are on the train back to Norwich now and all we want is to be at home and in bed.

Tremor has returned this morning, although not as bad as Friday.   I’m up reasonably early today, because I woke up early and couldn’t get back to sleep – tremor and dyskinesia saw to that.

I get myself downstairs, have my cuppa and Nutriblast, and take the dog for a walk.  When I get back from the walk, I change my settings over to Group “A”, and that feels much better (tremor-wise), although the dyskinesia hadn’t really improved.  My balance is still pants and so is my walking.  Dystonia isn’t a problem at the moment.  Mood and motivation is still good, and I seem to have more energy.

We see going to the NHNN tomorrow for a tune-up, so today we are going to Wayford Bridge to check on the boat, to Stalham to see my mother and brother, and to Hevingham to drop the dog off at my wife’s son’s house for the day.  The boat is looking good, and my mother is much better than last time I saw her (she has advanced Parkinson’s Disease) and her voice is strong enough to enable us to actually have a conversation.

We have dinner with my wife’s son and his girlfriend and then take our leave of them (and our dog) and get ourselves home and to bed.

What a difference 24 hours can make.  This morning I awake with only mild tremor in my left leg.  I’m on Group “B” settings, same as yesterday morning, but the difference in my tremor is quite remarkable.  I just wish I could figure out whether it’s because my Parkinson’s is having some time off, or my settings have reached a part of my brain that they couldn’t reach yesterday.

I want to finish subtitling my Interview video in Polish this morning, so need a reasonably steady hand to control my computer trackpad.  In fact, I’m so steady this morning that I use my wife’s mouse – something I haven’t been able to use successfully for a very long time!  After a little while I’m aware that I have some tremor in my legs (both of them), but it’s not troubling me enough that I am going to change my settings just yet.

Polish subtitles completed, I drop the Polish webmaster a quick email to ask him to check them, and then I see that I have a new email from the guy at Cleveland Cannabis College with the first few interview questions for me to script, in preparation for shooting their video.  I’ll have a think about them a little bit later – I need to finish my wife’s company’s books first, so that they can be emailed to our accountant on Monday.

While my wife gives the house a top to bottom clean, and reorganises the lounge, I sit amid the organised chaos and attempt to update the sales ledger spreadsheet.  Eventually, I enter the final figures, save the files and can relax a little bit.  Tremor is still remarkably under control, although dyskinesia has been a little on the strong side.   In fact, I had to check that my device was actually using Group “B”settings (and it was!), because dyskinesia is generally worse (and tremor generally better) when I’m using Group “A”

My wife has worked a small miracle in the lounge, which now looks much more cosy and homely than it did before she gave it her attention.  We have dinner, open a bottle of wine (red) and settle down for the evening.

I switch over to Group “A” settings almost as soon as I’m downstairs this morning.  Tremor is there in my left leg from the moment I wake, and I know I can’t deal with it today.  Today is the day when my wife and I must complete the company accounts for my wife’s business – I received the dreaded email from our accountant yesterday, asking me to send our records to him in order that he can perform the necessary annual audit.  Each year at this time, I promise myself that next year will be different – I will keep the books up to date on a weekly or monthly basis, and then there won’t be this mad panic at the last minute as we go through all of the bank statements, desperately trying to remember what the hell it was that we bought for £3.25 on the company debit card 18 months ago.  This year, I really mean it!

It doesn’t help matters that I am on my Group “A” settings – tremor control has been pretty good the last couple of days, but my wife thinks I have been a little aggressive and loud (and she’s right), and my patience and diplomacy is on the short side.  Luckily my voice is weak and strangulated today, so there’s no point in me losing my rag!  Eventually I send my wife out to walk the dog and de-stress, which she does, while I get on with putting some figures into the petty cash spreadsheet.  When she returns, we work together and manage to complete all of the purchase ledger entries.  It’s almost 6pm, and we agree to call it a day – sales ledger entries can wait until tomorrow!

My wife prepares our evening meal, while I check my email.  Polish subtitles for my Interview video have arrived, so I decide to make a start on them.   I talk quite a lot of words in the video and, consequently, there are a lot of Polish words, too.  It doesn’t help that my Polish friend has not exactly matched the Polish subtitles to the English subtitles – there is a fair amount of guesswork going on here, and it’ll be interesting to see if I have got it right when I ask him to check them.  I have subtitled almost half of the 8 minute video, and it’s getting on for 10pm, so I’m calling it a day, having (another) beer, and getting myself off to bed!

I slept well last night, and wake fairly tremor free for a change!

Downstairs, check email (Polish webmaster has emailed to say translations will be here tomorrow), cuppa, Nutriblast, walk the dog, PopMaster!

By the time PopMaster is over, tremor has returned and I switch my device over from Group “B” settings to Group “A”.  Much better tremor control, but my balance is definitely affected and my speech is even more indistinct.

I  am expecting a FaceTime call from Ohio this afternoon.  I have been emailed by someone who has seen my videos, and wants me to do a video interview for a Cannabis College that he is setting up to educate the general public and medical professionals in the benefits of medical cannabis.  The time for the call comes and goes, and then my wife arrives home and wants me to accompany her to North Walsham to do some food shopping.  I dash upstairs to put my shoes on, and while I’m upstairs the call comes through (and I miss it).  I text him and rearrange the call for when I get back from shopping.

We return from North Walsham, and I call Ohio on FaceTime while my wife chucks a ready meal in the oven and then takes the dog for a walk.  I have a good chat to the chap who is setting up the Cannabis College – it sounds very interesting, and just the sort of thing I’d like to be involved with.  I commit to producing an interview video for him (wearing a branded t-shirt) and also to taking part in live broadcasts to his classes of students – that should get the adrenaline going!

A late dinner and an early night are in order, and a change of settings back to Group “B”!