2016-07-31 – On the water

I slept well last night, and we had a bit of a lie in as well, so we are feeling good today.  We have to move our boat to a new mooring today, and we are socialising with my wife’s family this afternoon so we need to get our skates on this morning.

River Ant
River Ant

We drive to our current mooring at Stalham and the cruise around to Wayford Bridge where we have our new mooring.  The rivers are practically deserted, and it’s a beautiful day to be out on the water.  We moor up on the river bank, which is to be our home until a space becomes available in the main marina.  The riverbank is fairly overgrown, and I spend half an hour or so cutting back the undergrowth while my wife walks back to pick up her car.  When she gets back I’m about to collapse, so I sit myself down for a while to recover and then we lock the boat up and head back home.

River Ant
Windmill on the River Ant

My wife’s family arrive and we head over to The Vernon Arms for a few beers and plenty of chat.  I’m flicking between Group ‘A’ and Group ‘B’ settings at the moment, trying to achieve a state of calm.  I’m failing.  I’m looking forward to my tune-up – Wednesday can’t come soon enough.

My son arrives this evening, having had a slow journey from Dorset.  It’s good to see him, but I’m very conscious of my tremor.  I really hope to get it back under control by the time he has to go back home.

2016-07-30 – Preparing for visitors

My son arrives tomorrow evening and my daughter is travelling here from York on Monday, so my wife wants to prepare things for their visit.  Little things like making sure that the spare bedroom is accessible, having enough food in the kitchen to make some meals, stuff like that.

We plan to go food shopping in North Walsham as soon as the dog has had her walk, so I walk the dog while my wife is cleaning around the house.  We are just about to go shopping when my wife receives an email about a mooring for our boat which sounds rather nice, so we elect to go and see the mooring first and then get the shopping on the way home.

The mooring is gorgeous.  It’s probably the most secluded spot on the Norfolk Broads – totally hidden away half a mile up a private stretch of canal.  There are just two drawbacks: access by car is difficult, and there is no water supply (which is a bit of a bummer if you want to have a shower and your water tank is running low).  After much consideration and deliberation we decide against it – if I were a little fitter, or access was a little easier then it could have been a go-er, but there seems little point in going to the boat to chill out, when actually getting to the boat and transferring all of the paraphernalia associated with it will leave me exhausted.  Talking of being exhausted, by the time we get to North Walsham to do the food shopping I am exhausted!  We trundle around the supermarket with me using the shopping trolley as a means of support.  I try changing my device to my Group ‘B’ settings to see if that makes a difference, but can’t honestly say that it does.

Home again, I walk the dog again and then sit quietly on the sofa.  I’m fighting fatigue and apathy.  I ask my wife if she’d like me to prepare dinner.  “Do you feel up to it?” she asks.  “Yes” I lie.  I didn’t even manage to convince myself.  My wife prepares the dinner.  I go back to Group ‘A’ settings because dyskinesia is setting in on my right side again.  I’m seriously looking forward to going back to hospital next Wednesday!

2016-07-29 – Catching up with admin

I slept a little better last night, and awoke feeling quite rested.  I decided to make an early change to my settings to see how my mood is affected, so switch straight to my Group ‘B’ settings, get dressed and get myself downstairs.  I beat my wife downstairs (for a change) and put the kettle on.  I make myself a pot of tea, and make a pot of coffee for my wife.  This is promising – normally (on my Group ‘A’ settings) I’d have plonked myself down on the sofa and waited for my wife to do it!  My wife is going to learn all about bookbinding today from a friend of ours, Sheila Robinson, so she is off out and I consider what I have to do today.

I need to confirm to our new boatyard that  I will be taking our boat there this weekend.  I need to talk to my pensions guy about my pension.  I need to find us some accommodation for our holiday to Lanzarote.  I need to book some parking in London for our visit to the NHNN next week.  I need to find out who is playing at the Blues Bar next week when we go to London, and let my children know.

First things first.  Walk the dog.  Switch back to Group ‘A’ settings – dyskinesia has already reared it’s ugly head and, to be honest, tremor control is on the decline.

I spend some time researching parking places on Justpark.com, and manage to find something reasonably priced (for London) and get it booked.  My son is desperate to visit the Blues Bar and has been nagging me for months to take him, so next week he is going to drive us (and my wife and daughter) into London for my appointment at the NHNN on condition that we afterwards go to the Blues Bar.  It’s a deal!  I check out the gig list on the Blues Bar website, and text the details to my son and daughter.

The next most appealing item on my list is to research accommodation options for our holiday to Lanzarote later this year.  Matters are somewhat complicated by the fact that we have invited my wife’s brother to join us, and he hasn’t yet made his mind up whether or not he is coming, so we need to have accommodation with the flexibility to sleep an additional person if required!

It’s time for the dog’s afternoon walk  and I still haven’t chosen accommodation – or tackled any of my other tasks.  I feel as if I’m wading through treacle.  Everything is such an effort, and I’m so very tired.  I switch back to Group ‘B’ settings and take the dog out.

There’s no doubt about it, I definitely feel more “up” when I’m on Group ‘B’.  The dyskinesia is a proper pain, though.  It’s hard to know what to do, and so I find myself switching back and forth between the two groups of settings that are programmed into my device.  Neither is great.  Both have their plus points.  Both have a downside.

After dinner, I sit down with a beer.  The dyskinesia almost makes me throw the the beer over myself.  Back to Group ‘A’ settings I go.  My monosyllabic settings.

2016-07-28 – Mr. Angry

I’m really getting cheesed off with waiting for the hospital to call me so that I can make an appointment for re-programming.  This is the 3rd day that I will be sitting waiting for the phone to ring, and I’m not happy about it!  It probably wouldn’t be too bad if I wasn’t already feeling tired and grumpy because the last 2 nights have been pretty rubbish, sleepwise.

I start phoning the 3 numbers that I have for the hospital as soon as I get downstairs.  All 3 numbers just ring and ring and then go to answerphone.  Again.  And again.  And again.  I’m getting really stressed and angry about this.  In fact I pity the person that I do, eventually, get to speak to, because I’m in real danger of losing the plot!

Around 11.30 I change my settings to Group ‘B’ because I have a lot of tremor coming through on both sides.   Tremor on the left side still seems very strong, so I increase the voltage on the left side to 1.2v (from 1.0v.  I leave the right side at 1.5v).  Tremor is now more under control, but I’ll need to keep an eye out for dyskinesia in my neck.

Lunchtime comes and goes, and still I cannot get through to the hospital.  Around 1.30pm I try the phone number of one of the secretaries, and it is answered!!  Struggling to remain calm and reasonable, I explain that I need to speak to Joseph to make an appointment for re-programming next week.  She asks for my name and hospital number, and says she will see if she can locate him.  A minute later she is back to tell me that I already have an appointment booked for next Tuesday at 10.00am.  Steam is coming out of my ears as I calmly express my surprise that an appointment has been made without my knowledge at a time when I cannot easily attend, Norwich being some distance away from central London.  I also (calmly) express my dismay that I have spent the last 2 and a half days waiting for the phone to ring, unnecessarily.  She puts me through to “the lady who makes the appointments”, who is very apologetic and offers me another unsuitable appointment the same day, or an appointment the following week.  I explain to her that I am expecting to be in London with my children on either Tuesday or Wednesday next week, and that I wanted to kill two birds with one stone – the week afterwards will cost me about £100 to travel to London for a 30 minute appointment, and that’s money out of my pocket.  I don’t receive any benefits and cannot claim any travel costs, so this is a real issue for me, but I really don’t think that they “get it”.  Eventually I am offered an appointment on the Wednesday afternoon, which I gratefully accept.  I hang up and sit quietly, trying to calm myself down.  I didn’t lose my temper, but I did try to point out reasons why I might have been a little upset!  The stress has got my tremor going again, so it’ll take a good while for me to calm down.  Medication time!

2016-07-27 – Waiting for a call

I awoke this morning feeling exhausted before I’ve done a thing.  I had a bad night and woke many times.  I checked my Fitbit to confirm, and it agreed with me.  Apparently I had been awake and/or restless 18 times last night.

When I get my act together and get myself downstairs, I try calling Joseph at the NHNN again.  Same story.  Phone rings and rings and goes to answerphone.  No point in leaving a message, messages aren’t being picked up.  Another day of sitting in and waiting for the phone to ring.  I also have to be here for a delivery for my wife’s soft furnishings business, so this morning my wife has taken the dog for a walk so that I don’t have to.

I occupy myself by reading The Metro online, checking my email, drinking my tea – exciting stuff; don’t know how I manage to remain so calm.  I resist changing my settings from Group ‘A’ to Group ‘B’ until the tremor has got to the point where it’s driving me mad.  Group ‘B’ settings are still superior as far as tremor control goes, but since I reduced the right hand voltage to moderate my dyskinesia the tremor in my right side is still troublesome.  So long as the dyskinesia remains at its current level, I’ll leave it until bedtime before changing back to Group ‘A’.

I’m in desperate need of a shave and a haircut, so that’s my task for this afternoon.  I had my wife trim my hair with the clippers last time because I felt a little nervous about my lumpy mis-shapen head, but I’m feeling a little bolder today.  My beard has grown beyond the stage of just shaving it off, so I take the clippers to it first.  Mission accomplished without incident, so I proceed with the hair cut.  It takes me a little while, but I manage it and am happy with the result, even though it exposes my lumps and bumps again.  Now to shave.. this proves to be interesting, because my dyskinesia kicks in unexpectedly and I slice a chunk off my chin.  Blood everywhere, and it just doesn’t want to stop.  Oh well, as the founder member of The Parkinson’s Wet Shaving & Blood Letting Society (Norfolk Division) I can’t say I’m surprised.

I clean the bathroom, empty the dishwasher and walk the dog (because it’s now gone 5pm and I’ve given up hope that the hospital will call).

When I get back home, I’m suddenly overcome with tiredness.  My speech is slurred, and I feel as weak as a kitten.  I think an early night is in order.

2016-07-26 – Fitbit!

Had a better night’s sleep last night – most likely because I self-medicated just before going to bed last night.  We got up earlyish again because we are babysitting for our granddaughter again today – in fact my wife was on her way to Hevingham to pick her up before I was even out of bed.

I get myself dressed and go downstairs to make inroads on the pot of tea that my wonderful wife has so thoughtfully made before departing.   I am reminded (by my tremor) that I really must make an appointment with Joseph at the NHNN for a tune-up, so I try calling the secretary’s number.  Answerphone.  Again.

My wife returns with a happy and smiling grandchild, and we immediately go to take the dog for a walk together.  When we return, I try calling the hospital again.  The phone is answered!  Amazing!  Not so amazing is that the secretary tells me that she is unable to book an appointment for me, and that she has passed my message on to Joseph who will call me to arrange a date and time.  So… a day of sitting in and waiting for the phone to ring.

I’m getting fed up of tremor.  I change my device settings over to Group ‘B’ so that I can become less fed up of tremor and more fed up of dyskinesia.  Nothing seems to be working very well at the moment.  Tremor presides over everything regardless of settings, dyskinesia, dystonia, poor balance and weak voice are all present in varying amounts, but I’m coping with them.  The post arrives, and with it is my Fitbit, which I bought on eBay on Sunday.  I spend the next couple of hours installing software on my MacBook, iPad and iPhone, and learning how to use the damn thing!  I bought it on the recommendation of a friend, and thought it might motivate me to do a little more in the way of exercise.  I also bought one for my wife because I know she wants one.  Absolutely bloody typical that hers hasn’t arrived yet (and I bought hers a week ago).

My mother and father-in-law arrive to see their great-granddaughter, and this passes the afternoon away quite nicely.

Granddaughter returned, afternoon turning into evening, still no call from the hospital.  Dog walked.  Dinner eaten.  Hobgoblin Served.  Time for House Of Cards.

2016-07-25 – Making arrangements

We are up earlyish for a change – my wife and I are babysitting for our granddaughter today, and my wife has to be in Hevingham by 8.30am to collect her.  While she is out, I have a leisurely read of The Metro online, and drink my tea.  My tremor is fairly marked in my right arm, but I shall stick with Group ‘A’ settings for the time being because Group ‘B’ didn’t seem an awful lot better yesterday, and added some dyskinesia into the equation.

My wife returns with our granddaughter, who is happy and smiling, thank goodness.  We take her with us while we walk the dog, and then I disappear upstairs to make a couple of phone calls – one to Tony at Bank Boats to let him know that I have decided to take up the offer of a boat mooring at a neighbouring marina, and one to Joseph at the NHNN to try to arrange a re-programming appointment next Tuesday.  Contacting Tony is easy – job done.  Contacting Joseph at the NHNN is practically impossible.  I have his direct number, and two other numbers (the secretaries) to try.  The direct number rings and rings and then goes to answerphone, informing me that messages are not being picked up, and to please call the secretaries.  The first secretary is on annual leave, and her answerphone message informs me that messages are not being picked up, and to please call the other secretary.  The number for the other secretary rings and rings and then goes to answerphone.  I try the number repeatedly over the next half hour  or so, and then leave a message asking her to return my call.

Glass Bowl
Glass Bowl








We have a delivery this afternoon – the glass paperweights and bowls that we made at Langham Glass last week; how exciting!  They actually don’t look too amateurish considering that they were made by a couple of complete amateurs!

Glass Bowl
Glass Bowl

I’m completely wiped out by now, and am fighting hard to keep my eyes open – I suppose that being out and about yesterday has taken it out of me.  I close my eyes for a few minutes, but don’t fall asleep properly – I’ll only be wide awake later on if I have a sleep now.

I take the dog for her afternoon walk while my wife returns our granddaughter to Hevingham, and that wakes me up a little.  I have been noticing that I am getting some tremor in my head over the last couple of weeks – more so when I am tired.  I think this may be related to my most recent settings (Group ‘A’) which don’t give such good tremor control as the previous ones.  Something to consider at my next tune-up.  Talking of which, there has been no contact from the hospital, so I’ll call them again in the morning.

2016-07-24 – Out and about

I have to find a new mooring for my boat by the 1st of August, so time is running out.  We get up reasonably early (for a Sunday), and I’m on the case – scanning the waterways of the Norfolk Broads on Google Maps (satellite view) to see where all of the tucked away marinas are, and printing out “Wanted” cards to put on noticeboards and post through doors.  My wife and I plan out our day – where we are going to go looking, and the order in which we will do so.

And we’re off!  First stop is Dilham – picturesque and quiet, but at the end of the navigation, meaning it takes 45 minutes to actually get down the river to Barton Broad whereas currently we are only 10 minutes away.  We find a host of private moorings tucked away in a gorgeous location, and get talking to a couple of the local residents.  There’s also a noticeboard there with an advertisement for 2 moorings to let.  Seems quite promising, but we are probably going to struggle to get anything sorted by next weekend.  The locals are very helpful and give us a phone number to try.  We return to the car, attaching “Wanted” cards to anything that doesn’t move.

Next stop, Wayford Bridge.  We pop in to see Tony at Bank Boats.  I had him do some work on my boat last year, and he remembers me.  Amazingly, there is a possibility of a mooring coming up, and he will find out this week and let me know.  There’s another boatyard nearby, and we pop our heads in to take a look.  There are three possible moorings coming up, and in the meantime the owner can accommodate us on the main riverbank – so that’s one in the back pocket if nothing else comes up.  Rates are reasonable, too, which is a real bonus!

We decide to call it a day – we have achieved what we needed to achieve, so we drop in to see my mum in Stalham before heading home.

Home, email the Dilham moorings advertiser, phone the number we were given (no luck there, unfortunately) and take the dog for a walk.  I’m getting bucketloads of tremor and my voice is getting very weak – probably because I’m getting very tired by now.  I try turning my device off completely for 10 minutes, just to see if my voice improves.  I think that it does, but certainly not by very much.  Tremor is through the roof, and my dystonia is curling my right foot in a really uncomfortable fashion!  I power myself up again, and then switch over to Group ‘B’ settings.  Things are a little better, but still have plenty of tremor, especially in my left leg.  Dyskinesia is in my right arm, but it’s manageable so I’ll leave things be for a little while.

We have dinner, and I self-medicate with a Hobgoblin and follow that up a little later with some cannabis.  Much calmer now, and much more likely to be able to sleep easily tonight (last night wasn’t as bad as the night before, but I took a long time to drop off, and I then woke up several times in the night).

2016-07-23 – A low level of achievement

I’m struggling again today.  I had a poor night’s sleep, and didn’t want to get out of bed this morning.  I have no motivation.  No energy.  Tremor is bad again.  I try changing my device settings after I have had my morning tea and Nutriblast.  Group ‘B’ settings offer me better tremor control, but the price I pay is dyskinesia.  Dyskinesia returns almost immediately, and I know I can’t tolerate it for very long.  I try turning down the voltage on the right hand side to see if that will help.  From 2.0v down to 1.5v (I already turned the left side down to 1.0v, which was successful in that the dyskinesia in my neck disappeared.  Unfortunately the tremor in my left leg is now much more pronounced).  The voltage change on the right does reduce the dyskinesia (a little) in my right arm, but also means that tremor control isn’t what it was.  My left arm  is significantly weaker today – quite uncomfortably so at times.

We are going to a barbecue at my wife’s youngest son’s house this afternoon, and we have a few things we want to get done around the house before we go.  My wife walks the dog and then is busy upstairs trying to clear out the spare room so that my son and daughter can use it when they arrive next weekend.  I need to sell a large coffee table that is currently taking up far too much room in the lounge.  So, I polish the table and photograph it, and then I put an advert on Gumtree, list it on eBay, and post it to about 6 different “For Sale” groups on Facebook.  Within 10 minutes, I have a response from one of the Facebook groups, and 3 hours later the table is gone and I have money in my pocket.  Ever think you sold something too cheaply?  I spend the rest of the time before we go out cancelling all of the advertising that I spent all morning creating!

While we are at the barbecue I am having trouble trying not to throw my drink over myself, so it’s back to Group ‘A’ settings we go.  The dyskinesia doesn’t disappear instantly, but is definitely on the wane.  I manage to get my drink down my throat rather than down my t-shirt.

2016-07-22 – Paperwork!

I’m not feeling too sharp this morning – still very fatigued from yesterday, I guess.  Still, I have plenty of paperwork that I need to attend to, so that’s my plan today.  I need to go through the paperwork that Yorkshire Bank have sent us in connection with a business account for my wife’s business and I really need to contact the bloke who deals with my pension – I came across some paperwork yesterday that I had mislaid, so I logged onto the pension company’s website to check on my pension fund to discover that my fund went up by almost 10% in the month following the EU referendum!  Obviously somebody must be happy about Brexit!

I take the dog for her morning walk, and settle down on the sofa with a cup of tea, my iPhone, iPad and MacBook – totally connected, 100% Apple tart.  All of our Apple gear is outdated, though, so I have to think about replacing everything.  I’m keeping a close watch on eBay at the moment.

I switch my device over to Group ‘B’ settings.  My current tremor will make things a struggle.  Group ‘B’ feels a little better, but not a lot.  I can immediately feel the onset of dyskinesia in my right arm, and know that I won’t be able to tolerate it for very long.

Paperwork!  I start to go through the business account application forms, and my heart sinks.  These forms that they have posted out to us should contain all of the (accurate) application data that I entered online – all I should have to do is check and sign them.  The company name is wrong, the trading name is wrong, the trading address is wrong, the registered address is wrong…  I call the company help line, and eventually get to speak to a very apologetic man who promises to make a note on their system, and that they will prioritise our application when I send the forms back, as an acknowledgement that they have screwed up.  We shall see, but it’s not a very impressive start.  This is meant to be their business.  It’s what they do.  If they can’t get a simple application for a business account right, it really does make you wonder!

I switch back to Group ‘A’ settings before taking the dog for her afternoon walk – she’s been very patient, but I know her eyes are watching my every move, waiting for me to move from my seat and head towards the front door.

Tremor returns, accompanied by some dystonia, and I know I’m gong to be self-medicating before too much of this evening has gone by.

2016-07-21 – Langham Glass

My wife and I are having a glassblowing experience at a Norfolk glass factory today.  For her 50th birthday in December last year, we all clubbed together to allow her to select a number of “experiences”, ranging from a spa day through a ride in a hot air balloon to rally driving.  Today is her first choice, and she decided that she wanted me to join her, so she paid for me to have the glassblowing experience, too, for my birthday present (in May).

I have a fair amount of tremor this morning, and I’m delaying switching my settings over to Group ‘B’ until we are actually at the glass factory this afternoon – I want to have the best possible tremor control whilst I am handling molten glass.

My wife makes the tea/coffee and Nutriblast, and then takes the dog for a walk while I simply sit and pass the time of day checking my email, catching up on the news, preserving what little energy and motivation I have.

We arrive at the glass factory in FakenhamLangham Glass – just after 1pm.  My tremor is much worse today, probably because I’m going to be interacting with people that I don’t know.  Parkinson’s Disease is extremely reactive to stress.  I switch over to Group ‘B’ settings when it’s my turn to handle some glass, and immediately the tremor reduces.  Within a few minutes it returns, although not quite so severely, and my right arm and both of my legs are having a little dance.  Our instructor is excellent and doesn’t bat an eyelid even though he can’t avoid noticing. For the next 3 hours we are kept busy making paperweights and bowls.  Our instructor is so good that we almost (but not quite) believe that our items would have turned out just as perfectly if he hadn’t been there.  Towards the end, dyskinesia forces me to return to Group ‘A’ – luckily my paperweight and bowl are finished.

By the time we get home I feel completely exhausted and it’s just about all I can do to join my wife in walking the dog.  Dinner, a beer and House Of Cards follow, accompanied by another change of settings – at least until it’s time for bed.

2016-07-20 – Hot and sticky

Another fabulous warm Summer day.  It’s a little bit hazy today, but it’s 26 degrees Celcius in the lounge this morning.

I booked some holiday flights today for my wife and I, and her youngest son and his girlfriend.  I like to go away when the evenings are dark and the weather is cold – I really don’t see the point in paying out top money to go on holiday to somewhere where it’s too hot to sit out in the sun, when we are in the middle of our British Summer.  The last few years we have gone away to the Canary Islands in January or February, but we are mixing it up a little bit this year by going in November.  So… we have flights to Lanzarote; now I need to sort out our accommodation.  I send a couple of email enquiries, and now it’s just a case of deciding which apartment takes our fancy, and then looking forward to going away.  This will be the first time for me going through airport security since I had my deep brain stimulation hardware installed.  I’m not exactly worried about it, because I’m sure it will be okay, but it is certainly on my mind.  At least this time I won’t have any cannabis in my suitcase – something that has really worried me the last 2 years.  Parkinson’s Disease medications either have no effect whatsoever on my symptoms, or the side-effects make me feel so ill that I prefer to have the symptoms!  The only things that have got me through the last couple of years have been muscle relaxants – alcohol and cannabis.  Don’t get me wrong, I haven’t spent the last 2 years tanked up on booze and stoned out of my tiny mind…  A pint of beer does the trick, and miniscule quantities of cannabis work wonders.  I would have hated to have gone on holiday without anything to help me cope with the tremor, so I baked chocolate brownies with cannabis (2 small pieces per day) and packed them in Tupperware containers amongst the clothes in my suitcase.  I have no idea what would have happened if I had been caught, but I did find out that possession for personal use is not a criminal offence in the Canaries, so probably the worst that would happen would have been confiscation and a slap on the wrists.  This time it will be different!

Motivation – not good today, but has been worse!  Energy – not a lot.  Balance – not wonderful, but not actually falling over.  Speech – a bit slurred (to my ears).  Tremor – varies from 1 (mild) to 8 (pain in the arse).  Dystonia – uncomfortable, but not the end of the world.  Dyskinesia – nothing on Group ‘A’ settings, but annoying on Group ‘B’ – stayed on Group ‘A’ all day and changed to Group ‘B’ around 7pm.  Will change back at bedtime.

2016-07-19 – Reminiscing

An old friend and work colleague is visiting today – I haven’t seen her for a good many years, so it will be good to catch up.  I’m a bit concerned that my tremor is going to be a distraction so I’ll have to have a fiddle about with my device settings.  My wife disappears off to North Walsham to buy some food for our lunch, and I take the dog for her morning constitutional.

I’m having to switch between my Group ‘A’ and Group ‘B’ settings increasingly frequently because, although my tremor disappears when new settings are chosen, it returns more quickly each time.  So does dystonia.  And dyskinesia (but only with Group ‘B’ settings).  So what are the differences between these groups of settings?  Well, each group utilises (in my case) a different contact (or set of contacts) on the electrodes that are implanted in my brain.  Differing voltages are applied to these different contacts, and a host of other parameters may also be set, such as polarity, frequency and pulse width.  The aim, in each case, is to block signals from overactive neurons in a certain area of my brain.  So different groups of settings with but one aim – there’s more than one way to skin a cat!  I don’t know why the settings lose their effectiveness over time… perhaps my brain gets used to it, and decides to ignore the stimulus, or perhaps it’s just that my advancing Parkinson’s Disease means that more (or different) stimulation is required (and that’s a frightening thought, because it means that my illness is advancing at a rapid pace).  I did turn my device off for 10 minutes this morning to see how things were without it.  I have either deteriorated significantly in the last 3 months, or the deep brain stimulation has made me forget how bad I was.  I’ll choose to believe the latter.

My friend arrives and we spend he next few hours reminiscing about work colleagues, catching up on family events and, of course, eating some lunch.  We wrap it up with a short dog walk over at the village hall, and then she’s on her way.  I started off on Group ‘A’, changed to Group ‘B’ just after she arrived, and reverted to Group ‘A’ again shortly before she departed (dyskinesia, more than tremor, prompted this).

We have now had some dinner (leftovers from lunch) and opened a beer.  I’m thinking about another setting change, but I’ll wait a while yet – maybe my tremor and dystonia will calm down with the alcohol.

2016-07-18 – Too hot!

It’s the third morning in a row that we wake up to bright sunshine, so Summer is officially here.  It’s just a matter of time before someone moans that it’s too hot!  Me?  I never moan about the weather being too nice.  I love the warmth and sunshine – there are plenty of other things to moan about if you must, but we have so little good weather in this country.

I must apply myself to finding a new mooring for my boat this week.  I need to move it by the beginning of August, so there really isn’t that much time.  I’m going to put a couple of “Wanted” ads on the internet today and hope that I get some sort of response.

My tremor and dystonia are relatively calm this morning, but the usual pattern emerges.  Both get gradually more prominent as the morning wears on, and by the time lunch comes around I’m feeling in need of some kind of relief.  1pm and I change my neurostimulator over to Group ‘B’ settings.  I love the feeling I get when I change settings.  It’s a tingle that floods my body; I immediately stop shaking and my right foot relaxes.  It doesn’t last very long though, and I have significant tremor and dystonia again before the clock strikes 2pm.  I really need to go back to see Joseph at the NHNN, but it’s an expense I can ill afford.  I checked the train fares last night, and the cheapest fares are the 2nd and 3rd of August.  My daughter is coming to stay with us for a few days commencing 1st August, so I really don’t want to be away for a day while she is here.  My son is coming to stay for a few days at the beginning of August also, and wants as all to go to the Blues Bar while he is here.  Perhaps we can tie in a visit to the hospital at the same time?  He also wanted me to pick up the guitar again and has challenged me to learn something new now that my tremor isn’t so severe – I will have to see what I can do.

I persevere with the Group ‘B’ settings until almost 7pm.  By then I have some dyskinesia in my right arm and am fairly uncomfortable, so it’s a relief to go back to Group ‘A’.

2016-07-17 – Lazy Sunday

I’m on a bit of a downer today.  Not sure why, but I just am.  I think it is all down to the settings on my neurostimulator.  The settings that I am currently on (Group ‘A’) are my monosyllabic settings (so my wife says) – I neither make conversation or respond to conversational attempts made by her.  I just grunt or say “yes” or “no”.  They definitely make me feel less motivated, less energetic.  They are no longer so effective at calming my tremor as they were a coupe of weeks ago, and the dystonia in my right foot is very uncomfortable this morning.  I feel that the Group ‘B’ settings are accentuating other aspects of my mood – a minor irritation becomes unreasonable rage, minor excitement becomes impulsive behaviour – so I’m holding off changing them over at the moment.

The morning dog walk makes me feel a little better, gets me out of the house, gets me moving.  My wife is having a day of listing some of our unwanted items on eBay – a task that takes more time than you would credit.  She also works a minor miracle in the back garden, clearing a patch of weeds, nettles and general debris.  I sit in the lounge and do very little.

Time for the afternoon dog walk, and I suggest that my wife comes along with us, so we set off for a walk around the village – a change from the usual run in the field by the village hall.  As we walk out the front door I change my device settings over to Group ‘B’ because my tremor and dystonia are driving me up the wall.  My walking isn’t great today (I ask my wife to watch me walking, and she agrees that I’m not walking too well) and my voice is also very weak and husky.  I will have to speak to the Parkinson’s nurse about some speech therapy.  I can just imagine how frustrating it would be if I can’t make myself understood.  When we get back home I change back to Group ‘A’ settings because I don’t feel any better than before, and I don’t want to risk dyskinesia if there’s no benefit to be had.

I make dinner for once.  A very simple meal that doesn’t require me to use a sharp knife – chicken fried rice.  That’s my achievement for the day!

2016-07-16 – Mood swings!

I’m feeling better this morning – much more motivated (it’d be difficult for me to feel less motivated than yesterday).  We get up, make decisions about what will do today (go shopping, get my glasses fixed, take a carload of junk to the tip, start sorting the conservatory out so that I can find the tools I need to finish off jobs around the house, buy weedkiller to nuke the allotment with), and I take the dog out while my wife strips the bed and loads the washing machine.

I change my device over to Group ‘B’ settings because tremor is bugging me this morning, and also because I know my wife prefers my mood on Group ‘B’.

We head into North Walsham and my wife goes into Lidl to do some food shopping (her youngest son and his girlfriend are coming to dinner tonight) while I head off to the local optician to get my glasses fixed (I have a screw loose, but most of my friends already know that).  Then we drive to the tip, but when we get there there is a queue of about 20 cars and the gates have been closed while they move containers around in the yard.  We can’t be bothered to wait so we head off home, stopping at Waitrose to buy some organic full fat milk.  When we get home, there is nowhere for my wife to park her car outside the house so she puts on her hazard warning lights and passes shopping bags to me to take inside.  She grabs hold of the plastic carton of milk and passes it to me, only to find that the carton has split open and leaked milk all over her fabric sample books as well as the carpet in the back of the car.  I manage to cover my feet, the front door, front path and garden wall in organic milk, and I’m starting to lose the plot…  How I stop myself from hurling the leaky container down the road, I really don’t know – it definitely went through my mind!  I grab a bucket from inside the house and dump the container and what remains of the milk into it.  I’m practically incandescent with rage at this point and have to go and sit quietly for a few minutes.

While I’m pulling myself together my wife goes to the tip and also buys the weedkiller we need.  I’m in no mood to tackle the conservatory today.

For those that do not know me, I’m usually a very calm and placid kind of bloke – it takes a huge amount of provocation to make me lose my temper.  I think it could possibly be a combination of device settings and circumstances (provocation) that has sent me over the edge.  Back to Group ‘A’ settings and see if that fixes anything.

Okay.  I have calmed down now, taken the dog for a walk and am feeling more myself again.  Our visitors arrive, we chat, we eat and drink, and they depart.  I’ll keep my settings as they are for the time being.

2016-07-15 – What a difference a day makes.

Another bright morning, sunshine and blue skies.  That’s the only similarity to yesterday, though.  I had a good night’s sleep, so that isn’t to blame.  I feel unable to do anything this morning, except the morning dog walk.  The morning dog walk has to be done.  It’s expected of me, and she wouldn’t understand if I told her “sorry, no walk this morning because I just can’t be bothered”.  Maybe it’s because I overdid things yesterday at the allotment.  Whatever, my tremor is not very responsive to my neurostimulator today.  Persistent in my left leg and right arm.  Switching over to Group ‘B’ settings provides some small relief, but only for a matter of thirty minutes or so.  When you add in the (mild) dyskinesia that comes with it, the benefit of this group of settings over Group ‘A’ is questionable.  I revert to Group ‘A’ setting mid-afternoon.

The dog is getting restless.  Her built-in alarm clock tells her that I should be taking her for her afternoon walk.  I take her out just before 5pm – an hour after she started to nag me.  When I get back, I  load the dishwasher and put it on while I’m still standing.

My wife returns from work and remarks on my mood.  She wants me to try Group ‘B’ settings again, so I do.  Half an hour later she says that I appear happy again, so I will put up with the dyskinesia, self-medicate with alcohol and cannabis and be happy until bedtime!

2016 -07-14 – Summer has arrived!

Bright sunshine greets us this morning – makes a change from the ominous black clouds and torrential downpours of recent weeks.  I feel quite positive this morning and I’m thinking of getting down the allotment this afternoon to do some more weeding and perhaps strim the grass again – it was looking pretty overgrown when I went down there earlier this week.

First things first!  Cup of tea and Nutriblast.  Check my email.  Read the Metro online.  Take the dog for her morning walk.  Popmaster!  Start the car and charge the battery a little.

I spend 20 minutes weeding the front “garden” – I can hardly believe how quickly the dreaded creeper grows and takes over.  My tremor is starting to get stronger in my right arm (it’s already quite prominent in my left leg, but I’m dealing with that okay) so I change my device to Group ‘B’ settings.  Immediate relief on the tremor front, minor dyskinesia in my neck, minor dyskinesia in my right arm.  Bearable!  All my other symptoms (balance, gait, speech, dystonia, stiff and weak muscles) are stable and manageable.  It’s a pretty good day.

Allotment before strimming
Allotment before strimming

I spend almost 2 hours at the allotment, strimming the overgrown paths and trying to reduce the number of weeds attempting to strangle the onions and potatoes.  When I finish I am exhausted, but I still manage to take the dog for her afternoon walk.

Allotment after strimming
Allotment after strimming

I have a bath because I’m covered in green mush (from strimming long grass, nettles and other assorted weeds), and because I’m aching all over.  I then have a sit out in the garden with a couple of pints of apple juice – desperately trying to rehydrate.  I empty the dishwasher and vacuum downstairs before my wife arrives home from work.  I feel I have achieved today!

Refreshment in the garden
Refreshment in the garden

After dinner I revert to Group ‘A’ settings on my neurostimulator because the dyskinesia in  my right arm is increasingly problematic.

2016-07-13 – Search for a mooring

I had planned on doing some more catching up on my blog today, but a phone call from the company that owns the marina where my boat is moored (Bridgecraft) changed all of that.  I had been witholding my mooring fees for the current year because the access road to the marina is in such an appalling state that you need to own a 4×4 to negotiate it, and I’m not prepared to pay for something that I cannot use!  Bridgecraft admitted that the lane was in a poor state, and that they had no intention of making any substantial improvements to it.  They have waived my mooring fees, but I need to find somewhere else too moor my boat from August onwards.  So… I have been scouring the Norfolk Broads forum on the internet to see if anyone was advertising a mooring or had any suggestions as to where there night be one.  I’m still not much further forward – I think I’ll post a wanted advertisement and see  if that brings me any joy.  If you know of any moorings suitable for a 25ft broads cruiser, please get in touch!

I switched over my device to Group ‘B’ settings mid-morning because of tremor, and manage to put up with the dyskinesia that follows on an hour or so later.  It’s getting unmanageable around 4pm, so I change it back to Group ‘A’ again before taking the dog for her afternoon walk .  I’m not feeling too bad motivation wise, but I don’t really manage to achieve anything today.  I’ll empty the dishwasher, vacuum downstairs and have a shave before my wife gets home from work!  I’d better get a move on, because her father and brother are coming over for dinner this evening so she won’t be late home tonight.

Tasks completed, I change back to Group ‘B’ again and reduce the voltage on the left hand side to 1.0v (leaving the right hand setting at 2.0v) – previously it was the left hand side voltage that influenced the dyskinesia in my neck, so I think if I can reduce that (even if it means more tremor in my left leg) then at least I would have better tremor control on the right side.

Evening over, and I’m still on Group ‘B’ settings, so the experiment has been a success.  I’m frankly amazed that I haven’t experienced severe dyskinesia in my right arm and leg – let’s hope it stays that way.  I’m going to change back to Group ‘A’ settings at bedtime, though.

2016-07-12 – Taking it easy

I’m still feeling the effects of overdoing it on Saturday, so I’m lounging around a lot and doing very little.  My wife has taken the morning off work and is busy cleaning the house (which really should be my job, so I’m feeling guilty).  I eventually prise my backside off the sofa (after PopMaster) and take the dog for her morning walk.

Boat seats
Boat seats

When we get back I busy myself reading the Metro online, and editing a couple of photos of the boat cushions that we delivered yesterday so that I can use them to promote my wife’s business on Instagram, Twitter and Facebook.  My tremor is bothersome in my right arm, but I dare not change the settings over to Group ‘B’ at the moment – I changed them over this morning before I got out of bed, and was immediately rewarded with very uncomfortable dyskinesia in my neck, so changed them back again pretty sharpish.

A couple of things that have been bothering me since the last tune up of my DBS device… My balance isn’t great and, although I haven’t actually had a fall, I do tend to hang onto things to keep myself vertical.  In particular I notice myself leaning on the wall when I walk up the stairs.  My gait isn’t wonderful either, and I notice that I tend to drag my right foot slightly when I walk – particularly noticeable when I am wearing my wellies to take the dog for her walk.  My voice has become much weaker and huskier, and I notice people asking me to repeat myself more often. Sometimes, when I’m really tired, my voice disappears altogether, just leaving me with a whisper.  I also have been wheezing a fair bit ever since my operation – I sometimes sound like I’ve just smoked a couple of packs, and I gave up the evil weed over 10 years ago.  I did mention this to Joseph at the NHNN when he reprogrammed me on the 12th May, but he didn’t seem to think it was anything to do with DBS.  It still persists, though, and I think it may have something to do with the tubes they shove down your throat during surgery.

It’s supposed to rain heavily this evening, but the sky is getting very dark after lunchtime so I decide to walk the dog a little earlier this afternoon.  I then spend the remaining time trying to catch up with my blog, plugging a couple more of the gaps…


2016-07-11 – Helping out

We are off to Brundall this morning to deliver and install some boat seat cushions that my wife has been making.  We have to go to my wife’s place of work in Hevingham to pick the cushions up first, so things are a little rushed in the house this morning – cups of tea (and coffee) are drunk in super-quick fashion, the dog gets let into the back garden for a wee, and then we are out of the door and on our way.

Boat seats
Boat seats

Installing the seat backs is a pain in the bum, but we manage it eventually.  In with the rest of the cushions, one happy customer and a cheque for the balance – result!

An afternoon of paperwork is looming – invoices and quotations for my wife to prepare and I need to do something about transferring her business bank account from the absolutely useless NatWest to something rather cheaper (free banking!) and, hopefully, more competent.  I also need to pay the river license to the Broads Authority for my boat.  I’m still struggling a little bit with low motivation, but am managing to make myself do a few things, so that’s good.

Just after lunch I decide to change my settings to Group ‘B’ (my happy settings) because tremor is pretty strong in my left leg and right arm.  I know I won’t be able to tolerate them for very long because the dyskinesia in my neck will appear in no time at all.

I apply online for a business bank account with Yorkshire Bank, pay my river license and then switch my settings back to Group ‘A’ – the discomfort of a twitching neck is greater then the discomfort of the tremor.  Time for a little self-medication in the form of alcohol (a beer) and cannabis.

2016-07-10 – Oops!

I tried turning my neurostimulator off last night to see if the new settings were causing me to have difficulty in falling asleep, but it was just as difficult to fall asleep with the tremor running riot.  Perhaps it would have been better if I had self-medicated before going to bed, but by the time I thought of that, I couldn’t be bothered to go back downstairs.  Anyway, I did fall asleep eventually, and slept pretty well until 5am, when I turned my device on (Group ‘A’ settings!) and then dozed until 9.30am – lazy git!

It’s only when I go to get out of bed that I’m reminded that I might possibly have overdone things yesterday.  Every fibre of me aches, and my back, arms, legs, neck are all as stiff as a very stiff thing.   It’s lucky that I am married to the most fantastic woman on earth who makes me my tea and Nutriblast, and allows me to slob out on the sofa while she goes about finishing off the cast iron fireplace in our bedroom, does the washing, vacuums everywhere, etc. etc.

We are going out to see my wife’s family this afternoon – it’s her niece’s birthday and there’s a bit of a get-together over at her brother’s house.  I change my settings to Group ‘B’ because of the superior tremor control, but also because my wife says that I am more cheerful on those settings (apparently I’m rather monosyllabic on the Group ‘A’ settings).  All is well for the first couple of hours, but then dyskinesia in my neck becomes a bit of a nuisance, and I have to switch back to Group ‘A’  again.  I think we will have to book a return visit to the NHNN for reprogramming sooner rather than later.

As the day goes on my limbs feel as though they are loosening up, although I am having some pretty uncomfortable cramps in my hip.  Hopefully I’ll be feeling a bit more normal by tomorrow.

2016-07-09 – Riding the wave

I’m still feeling positive this morning, and am determined to take advantage of this feeling while it lasts.  My wife has been feeling a bit swamped of late – trying to build up her soft furnishings business, deal with the reality of my Parkinson’s Disease, run the house (because, frankly, I haven’t been much help), help her sons out (because that’s what mothers do) and 101 other things besides.  I know that she hates driving around in a dirty car, and her car is minging at the moment – covered in bird shit from when she parked under a tree in the village hall car park last week, full of fabric sample books and desperately in need of a good vacuuming out, upholstery in need of cleaning – so I made up my mind to give her car a thorough clean today, make her feel a bit better about it.  Before we have even finished our morning tea/coffee it’s chucking it down.  There’s no space outside the house to park her car while I wash it.  Obstacles to my achieving my goal.  Normally this wouldn’t be a problem – my lack of motivation would welcome the excuse to do nothing – but the fact that I’m feeling more positive, more motivated, has to be taken advantage of.  My wife has gone to North Walsham to pay some cheques into the business account.  When she returns I am going to move my car to the village hall car park and park her car outside the house, and I’m going to wash the bloody thing even if it is raining!

My wife returns and I get her to park her car in place of mine.  It’s absolutely hammering it down.  She wants me to hang some pictures in the lounge, so I get on with that while I wait for the weather to improve.  I hang a couple of pictures that my aunt, Carolyn Graham, gave to me – lino cuts that she did when she and my uncle, Bob Graham, were living in Somerset before returning to Australia.

"Pig" by Carolyn Graham
“Pig” by Carolyn Graham

She is from the artistic side of the family.  My uncle is a cartoonist and illustrator, and has many successful children’s books under his belt.  Their son (my cousin), Peter Graham, is a well known artist.  My other aunt paints for her own pleasure.  My older brother is a graphic designer.  Me?  I have difficulty painting a wall.

I also hang a couple of old metal enamel signs that we saw, liked and bought many moons ago.

Enamel Signs
Enamel signs

By this time it has stopped raining and the sun is trying to put in an appearance, so I get stuck in and wash my wife’s car.  By the time I’m finished (outside only) I’m completely exhausted, but pleased that I have managed to achieve what I had set out to do.  I take the dog for her afternoon walk, and then collapse (honestly) into a bath.

My wife dishes up dinner, and I realise that I really have overdone it when I scarcely have the strength to eat.  Time to collapse on the sofa, have a beer, switch my device over to Group ‘B’ (superior tremor control) and watch an episode of House Of Cards before bedtime.

2016-07-08 – Positivity

I switched back my device to my latest settings (Group ‘A’) before I went to sleep last night so that it doesn’t result in my thrashing around and shouting out in my sleep like it used to do.  I slept well, only waking briefly at 4.30am.  I get up at 9am. Dress.  Go downstairs.

I’m feeling a little better than I have been – as though I could possibly achieve something today!  If you have been reading my blog for the last few days, you’re probably thinking “about time, too!”.  Me too.

I jump start my car from my wife’s car before she goes to work (my car has been sitting unused for so long that the alarm has flattened the battery) and have a quick spin around the block to charge it up a little.  I walk the dog.  I check my email.  Check Facebook.  Read The Metro online.  Tremor is getting stronger in my right side, so I switch my device to Group ‘B’ again – tremor subsides.  The post arrives, and in it is an adjustable spanner I ordered to fit the gas bottles that run the boiler (no mains gas in our village) – I’ve been holding off changing over the empty bottle because I almost rounded off the nut last time.  I change over the empty bottle without rounding off the nut any further!  I rang Calor and ordered a couple of gas refills!  I’m on a roll now.

I actually listed the stove pipe on eBay!  I fill the dishwasher.  Put the dishwasher on.  Empty the dishwasher.  Walk the dog (afternoon edition).  Vacuum upstairs.  Vacuum the hall , stairs and landing.  Vacuum the lounge.

I’m exhausted, but happy that I’ve been able to do stuff today.

Dyskinesia, which has been slowly returning in my neck, returns to my right side so I return to Group ‘A’ settings on my neurostimulator.  Perhaps this is the solution until I can afford to go back to the NHNN for a re-tune… keep switching back and forth between the two settings groups on my device.  Because it seems to take a good 24 hours for any problems to emerge following a change in settings, perhaps I need to book appointments on two consecutive days in future – I’ll think on that one.

2016-07-07 – Nothing to see here…

I struggled a little bit with dropping off to sleep last night, lying wide awake for over an hour.  When I did eventually sleep, I slept well and woke around 5.30am.  I managed to sleep again until 8.45am, so I feel well rested.

Motivation is the biggest problem at the moment, because I simply don’t have any.  My get-up-and-go has fallen flat on it’s arse.  I have a list of tasks for me to do – most of them are incredibly simple and should pose no problem for me to achieve – but I’m not even going to list them here, because I know I’m not going to achieve any of them today.

Correction!  I’m only going to achieve two things today – the dog’s morning walk and the dog’s afternoon walk.  After I return from the morning walk I decide to do some fiddling with my neurostimulator settings to see if I can improve my mood.  My latest settings (Group ‘A’) are great in that I no longer suffer with the dyskinesia in my right side, but tremor has crept back fairly quickly.  I feel that tremor control was better on my old settings (Group ‘B’), so I activate Group ‘B’ on my device.  I can feel the new (old) settings kick in with a bit of a tingle and my tremor is instantly better.  I am at the upper limits of adjustment within Group ‘B’ – left side is 1.7v, right side is 2.0v.  I will watch out for dyskinesia, but for the moment these settings are superior.

I pop round to my neighbour’s to scrounge a 1st class stamp (our Post Office is still closed following the robbery on Monday) and while I am chatting to him I do notice a little dyskinesia in my neck – very minor and not painful (or even uncomfortable) but something to keep an eye on.

So, we will be getting a woman prime minister.  Theresa May and Andrea Leadsom are the 2 candidates in the race for the top job.  The best of a fairly poor field, but I don’t know enough about either of them to favour one over the other.  I believe that Theresa May has been an absolute disaster in the Home Office, so she’ll probably get the job!

When my wife returns from work, we go food shopping in North Walsham.  While we are out I’m aware that dyskinesia is becoming more of a feature and the dystonia in my right foot is also more uncomfortable, so no doubt I’ll soon have to go back to Group ‘A’!

2016-07-06 – A late surge of motivation

I have felt supremely unmotivated today – happy just to sit with my iPad and laptop watching the Oscar winning performance of a certain squirming British ex-prime minister as the contents of the Chilcot enquiry are made public and digested by the media.

I slept pretty well again last night and was hoping for a more positive outlook this morning, now that I have increased the stimulation from my device to the maximum.  No such luck.  Tremor is still fairly troublesome on both sides, but let’s put it into perspective…  I can sign my name and write legibly, and I don’t spill my tea carrying it from the kitchen to the lounge!

I have several things that I need to do today:

  1. I need  to locate an email from the bank, and print off a number of forms for us to complete and return.
  2. I need to list a stack of insulated stove pipe on eBay – I have been meaning to do this for several months but always seem to find something else more pressing to do.
  3. Vacuum downstairs.
  4. Shave.
  5. Get the washing in from the washing line.

I manage to avoid doing anything constructive, although I do take the dog for her 2 walks.  It’s 4pm before I get around to locating the email from the bank.  I print the forms out and suddenly get a surge of motivation.  I get the washing in, vacuum downstairs and then have a shave!  Incredible!  I still manage to avoid listing the stove pipe, mind you.

2016-07-05 – Confused and concerned

Another good night.  These new settings certainly seem to be agreeing with my sleep patterns.  I’m getting more and more unbroken sleep, I’m not thrashing around and calling out in my sleep and neither am I waking up in discomfort.  I’m a little bit disappointed that my tremor is coming back again so quickly, and I appear to be getting towards the upper limits of adjustment with my device…

I have a moderate tremor going on in my right arm as I return from my morning dog walk, and I’m tempted to increase the voltage on the right side  I decide to sit quietly for a while and see if it will calm down a little on its own.

I send a text to my son (who is on his first holiday abroad accompanied only by his girlfriend) and one to my daughter.  I have a FaceTime call from my daughter, which is nice.  A couple of texts fly between me and my mate Gerry at Fig Tree House.  Then I pick up my copy of the letter from Joseph at the NHNN which was sent to my GP following my re-programming on the 28th of June.  I had given it only a cursory glance when it arrived at the weekend – it merely contained a summary of the settings programmed into my device following my appointment.  I read the letter in detail, and am now confused because the settings detailed in the letter do not seem to correspond with what Joseph had told me last week.  I decide to check, using my remote control, the minimum and maximum voltages permitted on each side of my body.  Sure enough, they do not correspond to the values stated in the letter.  Completely different.  I’m going to have to email Joseph and see why this is.  I’m also alarmed to note that the battery level on my device has fallen to 2.99v already – it was 3.01v just a few days ago.  If I turn my (right side) voltage up to the maximum permissible then I will be receiving 2.9v – this seems a little too close for comfort to the battery level remaining.  The battery is supposed to last between 3 and 5 years – it’s been less than three months since my hardware was implanted.  At this rate I’ll have to have the neurostimulator replaced within 12 months.  I’ll raise this concern with Joseph as well – see what his comments are.

I’m feeling a bit low today.  The discovery that the hospital letter doesn’t tally with either my understanding of my re-programmed settings or with the actual settings held in my device doesn’t really help.

We are going to dinner at my wife’s eldest son’s house tonight, so I go for it with my device settings and whack both sides up to maximum (1.9v on the left, 2.9v on the left).  Still my tremor isn’t completely calmed.  I can see myself going back for a tune-up sooner rather than later…

2016-07-04 – Post Office job!

We are no stranger to sirens in this village.  We are evidently one of the routes that the ambulance drivers habitually use, and we generally have 1, sometimes 2, ambulances per day pass through the village with sirens blaring and lights ablaze.  We weren’t unduly surprised to hear a siren approaching the village this morning, just as we were sitting down with the first brew of the day.  The surprise was that the siren stopped in the middle of the village, outside our little Post Office.

Southrepps Post Office
Southrepps Post Office

I saw the police cars (2 of them) outside the Post Office as I took the dog for her morning walk, and took a snapshot on my phone to post on Twitter – perhaps someone there would shed some light on what had happened?  We continued our walk to the field by the village hall, and came across 2 more police cars in the village hall car park, and half of the car park had been cordoned off.  As we returned to the house, a police dog unit vehicle arrived.  What on earth could have happened?  As soon as we got home I posted the picture I had taken on Instagram and Twitter.  Within 5 minutes I received a Tweet from the Eastern Daily Press asking if they could use my photo.  It transpired that the postmaster had been attacked and knocked unconscious as he arrived for work this morning.  His assailant had taken his keys and then burgled the Post Office.  I do hope he is okay – I often have a good old chinwag with him if I pop in there for a stamp or a card…  It’s a shock to think this could happen in our sleepy little village.

I have a fair bit of tremor on both sides this morning.  I’m not sure if the events of the morning have had an impact on it, but it certainly won’t have helped.  It seems a little stronger on my right side than on my left today, so I increase the voltage to my right side by 0.1v and leave the left side alone for the time being – if I provoke any side effects I need to know which setting has caused it.  My device is now delivering 1.8v to my left side, and 2.8v to my right.

We are going to The Vernon Arms this evening to meet a local couple, friends of one of our neighbours.  He is also a Parkinson’s Disease sufferer, and is currently being evaluated for deep brain stimulation at the NHNN.  He and his wife want to talk about the operation, and how effective it has been for me.  I had better not self-medicate prior to our meeting because I want him to see exactly how my condition is with DBS but without any medication at all.  I have a bit of tremor in my neck and jaw this afternoon, and I turn up the voltage a click on the left hand side just for a moment to see if that will calm it.  It does.  I turn it back down again for the time being – I may increase it later on tonight if there have been no adverse effects from my earlier increase of stimulation to my right side.


2016-07-03 – An easy day.

We get our deserved lie-in this morning and don’t rise until gone 10am.  Still feeling pretty shattered, though.  I can’t do late nights like I used to be able to!

My wife makes the tea and coffee and then disappears off to Hevingham to collect our dog, leaving me to catch up with my blog (which I am doing!).  I also empty the dishwasher and put the breakfast dishes and mugs in there.

My tremor is bothering me still.  It’s mainly in my left leg, although my wife said that she noticed I had a significant tremor in my right hand last night when I was holding a torch while trying to get my mother out of my brother’s van.  Possibly because I was incredibly tired at that stage.  I put up with it for a while and then decide to increase the voltage on my left side by 0.1v (now 1.8v left, 2.7v right).  There is improvement, but I can still feel the shaking.  I’ll resist the temptation to add another click or two until later in the day.  Tremor in my right side is mainly under control, but it re-emerges from time to time just to let me know it’s still there.  The difference between my pre-operation tremor and the post-operation tremor is control.  Before my operation the tremor had become so violent that I was unable to control it.  Now when I get tremor, I can generally calm it without too much trouble.  When I take my mind off it, then it creeps back again.  It’s the degree to which it creeps back that determines whether or not I increase the voltage on my neurostimulator.

It’s a fairly bright day here today.  My wife returns with our dog, who is pleased to be home and pleased to see me.  I let her take me for a walk before the weather decides to change.

I’ve now had some dinner, opened a beer and mildly self-medicated with cannabis, so I’m nicely relaxed and feeling no urge to change my device settings at the moment.

2016-07-02 – It’s a family affair.

Today we are travelling down to Winchester to celebrate my Aunt’s 9oth birthday.  My brother is driving us down there in his van, along with George (his Gordon Setter) and my mother (who has advanced Parkinson’s Disease).  We have to leave our dog with my wife’s youngest son and his girlfriend for the day, so go to Hevingham first to drop her off, and then to Stalham where my brother and mother reside.  I’m glad not to be driving – I’m definitely not up to driving such a long distance at the moment.  It will be interesting to see if the excitement of the occasion (it’s been several years since I have seen my Aunt and my cousins) causes any impulsive behaviour to emerge.

It’s a long drive – 220 miles each way – and it takes us nearly 4 and a half hours (including a pit stop at a McDonald’s along the way).  We arrive in Winchester to find many of the roads in the city have been closed for some sort of event.  Amazingly we manage to find our destination (it was a complete mistake, but life’s like that sometimes) and find parking within a stone’s throw of the Hotel Mercure, where our family gathering is taking place.  We transplant my mother from the van to her wheelchair without too much drama, and make our way to the bar!

The next few hours pass by with startling velocity.  It’s really good to see my aunt and cousins again, and to meet all of their extended families.  In most cases we have met before, in the dim and distant past, but we haven’t been in touch.  Girls and boys that I remember have become men and women, mothers and fathers.  The next generation shuffling up the ranks.

My tremor is still present but not too distracting, so I resist the temptation to tinker with the settings.  I haven’t had any recurrence of dyskinesia or impulsive behaviour and don’t want to risk provoking either one of them.  I have noticed a slightly manic quality to my laugh, but nobody else seems to notice it, and my wife would certainly tell me if I were acting out of character.  My balance is relatively good today, but my walking feels a little stilted – I’m not tripping or stumbling, though, so it can’t be too bad!

After eating and drinking and chatting it’s time to return to Norfolk, and we get mum back in the van and say our goodbyes.  It’s 1.15am by the time we get back to my brother’s house in Stalham.  Mum has had a ‘freezing‘ episode, and it takes us almost half an hour to get her out of the van and into the house.  By the time my wife and I get home and get to bed, it’s almost 3am.  A bit of a lie-in is called for in the morning, methinks!

2016-07-01 – A period of adjustment!

My recent reprogramming has definitely improved matters – I can now leave my neurostimulator switched on all night without it causing me to thrash around and shout out in my sleep, and the troubling dyskinesia, with which I had been suffering, is now a distant memory.  Tremor has been creeping back, though, and I decide to increase the voltage on both sides to see if it can be moderated without causing any side effects.  Joseph (at the NHNN) has given me a bit more control over my device: I am now able to adjust the voltage by 0.6v above and below the settings that he programmed into my device in steps of 0.05v which gives me a wide range of adjustment.  I left hospital on Tuesday with my device delivering 1.5v to my left side, and 2.5v to my right.  I increase the voltage by 0.1v on both sides (now 1.6v on the left and 2.6v on the right) and feel an immediate reduction in tremor.  I’ll let things settle and see how my tremor is at the end of the day.

I go about my daily routine.  The dog takes me for a walk – it’s a sunny morning and no great hardship.  I load the dishwasher and switch it on.  Bring in the washing from the washing line, and replace it with the next load from the washing machine.  I’m definitely feeling a bit more motivated than I have been, and suspect this is due to the increased stimulation.

I take the dog for her afternoon walk, and then go to the allotment to check on the weeds and pick some strawberries.  There are a few broad beans as well, so we can have those with our dinner tonight.

I chuck a couple of lamb shanks in the oven and prepare some veg – new potatoes, carrots and the broad beans from the allotment.  While everything is cooking I manage to make a start on the ironing!  Definitely more motivated!

I still have a fair bit of tremor on both sides, so whack the voltage up another 0.1v on both sides (1.7v left, 2.7v right).  Again, the reduction in tremor is instantly noticeable.  No immediate side effects – I’ll keep a close eye on things, because they tend to creep up on you!  In the meantime, a little self-medication is in order…