2016-11-30 – Preparation for shooting!

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.

2016-11-29 – Getting things back to normal

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.

2016-11-28 – Returning to the UK.

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.

2016-11-27 – Playa Chica.

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!

2016-11-26 – Staying local.

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.

2016-11-25 – Los Hervidores

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.

2016-11-24 – Lazing around.

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.

2016-11-23 – Engagement celebration.

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.

2016-11-22 – Timanfaya.

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.

2016-11-21 – Come fly with me

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.

Medtronic Card
Medtronic Card

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.

2016-11-20 – Getting the house straight.

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!

2016-11-19 – Visiting hours.

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.

2016-11-18 – Feels like Winter!

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.


2016-11-17 – Another job.

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!

2016-11-16 – Peace and quiet.

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.

2016-11-15 – Just to be sure…

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.

2016-11-14 – Well oiled!

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.

2016-11-13 – Reviewing software.

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

2016-11-12 – Dragged out.

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).

2016-11-11 – Feeling very lazy.

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.

2016-11-10 – Doing nothing much.

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.

Our black labrador, Willow

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!

2016-11-09 – Editing, that’s all…

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!).

2016-11-08 – The waiting game.

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.

2016-11-07 – Cold and wet.

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.

2016-11-06 – Chilling by the fire.

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…

2016-11-05 – Recovering

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!

2016-11-04 – Jimmy Eat World.

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).

Jimmy Eat World on stage
Jimmy Eat World on stage

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!

2016-11-03 – Shopping and babysitting.

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…

2016-11-02 – A box of goodies!

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.

CBD Goodies
CBD Goodies

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.



2016-11-01 – Pain

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.