2017-01-31 – Exhausted!

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

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

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

2017-01-30 – Turning myself off.

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

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

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

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

2017-01-29 – Not much help, really.

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

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

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

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

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

2017-01-28 – Making myself useful.

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

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

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

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

2017-01-27 – Filming again

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

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

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

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

2017-01-26 – A bad influence.

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

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

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

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

2017-01-25 – The God Plant

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

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

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

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


2017-01-24 – Good neighbours.

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

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

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

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

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

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

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

2017-01-23 – Back to normal

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

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

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

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

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

2017-01-22 – Recovering nicely

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

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

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

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

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

2017-01-21 – Kicked in the guts

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

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

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

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

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

2017-07-20 – I’m bugged!

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

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

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

2017-01-19 – Video!

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

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

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

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

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


2017-01-18 – Sat on my backside.

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

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

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

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

2017-01-17 – Getting out of the house.

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

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

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

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

Sunset at Southrepps

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

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

2017-01-16 – A day of Netflix.

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

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

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

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

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

2017-01-15 – Spick-and-span.

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

First things first! Tea, Nutriblast, dog walk.

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

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

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

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

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

2017-01-14 – Shopping again.

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

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

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

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

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

2017-01-13 – Slipping and sliding.

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

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

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

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

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

2017-01-12 – Catching up with stuff.

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!

2017-01-11 – Preparing for colder weather.

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).

2017-01-10 – An interview.

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.

2017-01-09 – Feeling very rough!

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!

A blazing fire
A blazing fire

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.

2017-01-08 – Man ‘flu.

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.

2017-01-07 – Not doing much at all…

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.

2017-01-06 – An emotional vlog.

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.

grandma and great-great-granddaughter
My wife’s grandma and her great-great-granddaughter

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.

2017-01-05 – Tidying myself up.

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).

2017-01-04 – Feeling a little fragile.

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.

2017-01-03 – Road trip.

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.

2017-01-02 – The sales!

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!

2017-01-01 – A very wet new year.

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.