2018-06-29 – Fatigue.

I have a vlog to script, film and edit today, and I’m having difficulty in motivating myself to do it.  The last two days at the Royal Norfolk Show have really taken it out of me, even though I spent most of the time sitting down.  My wife (with her tongue firmly in cheek, I suspect) suggested that I choose “fatigue in Parkinson’s Disease” as a subject, so that’s what I do!

I manage to make myself start scripting the video (I have produced a weekly vlog for over 18 months now, and have made a commitment to publish one every Friday, so it’s unthinkable that I would miss this one), and struggle through the filming and editing so that when my wife arrives home from work I’m just about ready to upload the video to my YouTube channel.

We got to Lidl in North Walsham to get some beer and groceries, and then I spend the evening posting links to my vlog on Facebook, Twitter and Instagram.

2018-06-28 – The second (and final) day of the Royal Norfolk Show.

We are up at 6am for the second (and final) day of the Royal Norfolk Show.  We drop the dog off at my wife’s youngest son’s house in Hevingham, and we are at the Norfolk Showground by 7.30am.

It’s another scorcher of a day, and the craft tent is buzzing with people.  We had a busy day yesterday, but today is even busier.  If half of the enquiries we have had over the last two days result in orders, then my wife is going to be over the moon.  It’s a difficult thing to sell at an agricultural show, because we are selling a bespoke soft furnishings service rather than having a ready made product to sell, and this is the first time my wife has had a stall at the show so we really weren’t sure what to expect, but the number of (seemingly) serious enquiries is most encouraging.  The flow of potential customers reduces to a trickle by 4pm, and we start thinking about pecking the stall away and carrying it to the car (which we aren’t allowed to do until after 6pm – but there’s no harm in thinking about it).  We actually start clearing away at about  5.15pm, carrying stuff over to the car in the car park because we can’t bring the car into the showground until 7.30pm, and we reckon we can be packed up and on our way home by then!   And so we are – we unload the car at Hevingham, collect the dog, grab a couple of beers from Tesco in Aylsham and arrive back in Southrepps at 8.45pm.

Dinner (soup and soggy croutons), beer, cannabis and bed – we’re both completely exhausted.

20018-06-27 – The Royal Norfolk Show.

We’re awake and out of bed at 5.30am, getting ready to leave for the Norfolk Showground where my wife has a stall at the Royal Norfolk Show to promote her soft furnishings business.  A quick cup of tea (coffee for my wife), put the dog in the car and we are on or way to Hevingham to collect my wife’s youngest son (who’s coming to the show to help out) and drop off the dog (who’s being looked after by my wife’s youngest son’s wife).  We arrive at the showground a little after 7am, and prepare ourselves for a long and busy day.

It’s a beautiful day here in Norfolk – brilliant sunshine beating down on us from a clear blue sky.  The show is very busy, and my wife is worn out from smiling at everyone and saying hello.  I’m worn out from watching her – I spend most of the day sitting down at the back of her stall, trying to keep out of the way.  Her soft furnishings business seemed to generate a fair amount of interest, and we’re hopeful that that interest will result in some business over the next few months.  Fingers crossed!

We shut up shop around 6.30pm and head home to Southrepps, picking up our dog (and dropping off my wife’s youngest son) on the way.   We are both exhausted, so an early night is definitely on the cards.

2016-06-26 – Another physiotherapy session.

I have another physiotherapy session on the motorised exercise bike this morning, so I head off to North Walsham cottage hospital (dragging my daughter along with me) as soon as I’ve had my morning cuppa and the dog has had her walk.  I easily maintain a cycling rate of over 80 rpm for over 45 minutes, in fact it seems too easy to me – perhaps I’ll get the physiotherapist to increase the effort required next week.

This afternoon we go over to Hevingham so that my daughter can see our youngest granddaughter, and then we go to the Norfolk Showground to help my wife set up her stall at the Royal Norfolk Show.  By the time we have finished at the Norfolk Showground, grabbed a burger at McDonald’s and returned home to Southrepps, it’s getting late.  By the time we’ve bathed, quaffed a swift beer and watched 20 minutes of telly (to wind down), it’s half past midnight.   We have an early start in the morning (it’s the first day of the Royal Norfolk Show) so we get ourselves to bed – we are going to be shattered tomorrow…

2018-06-25 – Obliged to cook some breakfast.

My daughter is staying with us for a couple of days, so I feel obliged to cook some breakfast – I usually make do with my nutriblast, but this morning I prepare fried eggs on toast for us both.  I take the dog for her first walk of the day, and then sort out my wife’s business insurance to make sure that she has cover whilst attending the Royal Norfolk Show this week.  I also research (and buy) additional trade tickets for the event so that my wife’s youngest son and his wife can come to the show to help us out.

This afternoon, we go to the Norfolk Showground to help my wife set up her stall for the show – my wife has worked so hard to make this event a success for her soft furnishings business, and her stall is looking really good now.

It’s late evening by the time we get back to Southrepps, so my wife knocks up a dinner of salad, ham and quiche, and then we watch a little bit of telly before calling it a day.

I have restless legs this evening, so I self medicate with a  little cannabis which helps to calm them and allows me to get to sleep without too much trouble.

2018-06-24 – Clearing the junk.

My daughter is coming to stay for a couple of days, arriving this evening, so I spend much of the day clearing the junk from our spare room.  After my morning cuppa, nutriblast and dog walk, I set about clearing the room – moving my filming equipment into our bedroom, vacuuming upstairs, putting stuff up in the loft, cleaning the windows and window sill, making the bed…  It’s certainly not ideal, but at least you can get to the bed without having to climb over stuff, and it is now clean and tidy.

I vacuum downstairs while I’m at it, then take the dog for another walk and drop in to the allotment to see how things are doing.   Considering how little rain we have had over the last couple of weeks, everything is doing really well.  I pull a few weeds up, harvest some spinach and return home to await my daughter’s arrival.

2018-06-23 – Up early (for a Saturday).

I’m up early (for a Saturday) because my wife is up early (she’s working all weekend, trying to get things ready for her soft furnishings business‘ stand at the Royal Norfolk Show next week) so, at just a tad after 7.30am, I’m sitting in the sofa in the lounge drinking my morning cuppa.

I’m still feeling very tired from my day in London on Wednesday, so I’m not expecting to achieve very much at all.   I spend a good proportion of the morning posting to social media, and responding to messages and emails, although I do take a break to take the dog for her morning walk around the village hall field.  The afternoon is spent cleaning the bathroom (so that my wife doesn’t have to do it).  It makes me realise how much my Parkinson’s Disease is having an effect on me – it takes me hours to make a thorough job of it, something that I would have accomplished in under 45 minutes prior to PD.  I also have to take a couple of breaks to rest, which makes me feel pretty pathetic.  I finish the afternoon by vacuuming downstairs and walking the dog (again).

2018-06-22 – Chauffeuring…

I am chauffeuring my wife’s niece and her friend to their school prom this evening, so I’m really on the case with my weekly vlog today.  Fortunately I have decided to vlog about my appearance on the Victoria Derbyshire show and my attendance of Doctor Frank D’Ambrosio’s meeting in the Houses of Parliament on Wednesday, so no research required!  I have my video completed, uploaded and published by 4.30pm, leaving me just enough time to walk the dog and change into some smart trousers, shirt and tie before getting in the car and driving over to my brother-in-law’s house in Spixworth.

Photographs are taken of the young ladies, dressed in all of their finery, before we load them into my car (which practically requires the use of a shoehorn), I don my chauffeur’s hat and then drive them to the prom (which is all of a mile and a half away).

Chauffeuring the girls
Chauffeuring the girls

 I deliver the girls to the door of the hotel, and then park up to watch the line of classic cars and exotic machinery that the other prom attendees are arriving in, before returning to Southrepps for some dinner (soup and soggy croutons) and then going to Lidl in North Walsham to do our weekly grocery shopping.

2018-06-21 – The proverbial log.

I slept like the proverbial log last night, and didn’t want to get out of bed when my wife’s alarm went off at 7.30am.  I stayed snoozing (while my wife was busy downstairs making tea, coffee and nutriblasts) until 8.30am.  I feel completely wrecked this morning – I ache all over, but my leg muscles are the worst.   After cycling on the motorised exercise bike for an hour on Wednesday, all of the walking and stair climbing of yesterday really finished me off – little wonder that I was tending to drag my right foot a little by the time we got to Westminster.

I do little other than the statutory two dog walks today.  I intended to clean the inside of my car, in preparation for driving my wife’s niece (and her friend) to the school prom tomorrow night, but all I can muster up the energy to do is to vacuum the floor mats while I’m vacuuming downstairs in the house – still, it doesn’t look too bad (given that it’s several months since I last cleaned the interior).

I publish a few photos (from yesterday) on Facebook, Twitter and Instagram, bung a ready meal in the oven for when my wife gets home, and slump on the sofa next to the dog.

2018-06-20 – Awake at 4.20am.

I’m awake at 4.20am and can’t get back to sleep, so I lie awake thinking about what I want to say (given the chance) on the Victoria Derbyshire show this morning, and wondering whether or not I’m expected to speak at Doctor Frank’s meeting in Parliament this afternoon.  I get up when my alarm goes off (at 5.30am), have a quick cup of tea and then drive to Gunton station to catch the 6.05am train to London.

All goes according to schedule until I get to Liverpool Street station, and the taxi that is meant to take me to the television studio is late.  After waiting (in vain) for over 15 minutes, I decide to travel to Oxford Circus on the underground, and stagger the distance from the station to Broadcasting House, arriving hot, sweaty and exhausted just in time to be included in the discussion on medicinal cannabis.  I give a brief history of my cannabis use to alleviate my Parkinson’s Disease symptoms, fail to mention the cannabis research company that my journalist friend wanted me to mention (the opportunity didn’t arise) and then it’s all over.

Me, Greg De Hoedt, Norman Lamb & Baroness Meacher
Me, Greg De Hoedt, Norman Lamb & Baroness Meacher

In the green room I get chatting to the chap that runs all of the UK cannabis clubs (Greg De Hoedt), Norman Lamb MP and Baroness Meacher, all of whom were complimentary about my contribution, and very hopeful that the law will change in the next few weeks to enable doctors to prescribe cannabis to their patients.

Greg and I left the studios together and grabbed a bite to eat before heading off to Westminster to attend Doctor Frank’s meeting in Parliament (to which Greg was also invited).

Me outside Broadcasting House
Me outside Broadcasting House
Doctor Frank D'Ambrosio
Doctor Frank D’Ambrosio

After traipsing up many flights of stairs, we arrived at the appointed venue only to find that it had been changed, but nobody seemed to know where it would now be held.  After a chaotic half hour, a room was acquired, the assembled crowd filed in and the meeting began.   It was a bit like pushing at an open door – of the (approximately) 50 people in the room, not a single one had anything but support for the legalisation of cannabis for medicinal use.   There were some very moving testimonies from cannabis patients, and the MPs amongst us (of which there were several) openly supported legalisation for medicinal use and were extremely bullish about this being accomplished within a matter of weeks rather than months.


I return to Norwich feeling very positive about the day’s events, which takes my mind off the sheer exhaustion that I’m experiencing – I’ll be taking it very easy for the next few days, I think.

2018-06-19 – A bit more of a workout.

Another session on the motorised exercise bike at North Walsham cottage hospital this morning, and this time it’s a bit more of a workout – I’m feeling as though I’ve actually expended some energy this time.

I have a busy day with the media.  It’s all kicking off with the campaign to legalise cannabis since the Home Office confiscated a sick child’s cannabis based medicine, and then performed an about-turn and gave it back when they realised the strength of public opinion on the issue.  Since that happened, all of the mainstream media have been running medicinal cannabis stories, and my phone keeps ringing.  I do a telephone interview with the Daily Mirror, for publication with a feature on medicinal cannabis on Thursday, and then I get a call from the BBC wanting to know if I would be prepared to tell my story on the Victoria Derbyshire show tomorrow morning.   I give it a couple of minutes of consideration, and agree (in spite of the fact that it entails me catching a train to London at 6am).  I have a conversation with another journalist (with whom I have had dealings before) who wants me to mention a certain cannabis research company if the opportunity arises.  We’ll see!

I make sure of the details of the meeting in Parliament tomorrow afternoon and assemble the paraphernalia that I need to take with me (train tickets, instructions for gaining entrance to the Houses of Parliament, DBS controller, video camera, etc, etc) , and then get an early night.

2018-06-18 – The likely reason…

I finally found out the likely reason for my doctor changing his mind about prescribing exenatide for me – apparently his indemnity insurance would be voided if he prescribed “off label” (i.e. for a condition for which it is not approved).  My neighbour’s son-in-law (a doctor) said that also it would come down to my doctor knowing and trusting the consultant who was asking him to prescribe the drug, so the fact that my neurologist (based in London) is an unknown quantity to him would go against me.   I guess I have to hope that my neurologist will agree to writing the prescription for me, at least in the short term – I will see if I can get to speak to her this week to ascertain her response.

After a cloudy morning, the sun emerges and I get on with the task of polishing my car in preparation for being my wife’s niece’s transport to her school prom this Friday.  It doesn’t take too long (I do it in two shifts) but my reserves of energy are very low (especially after washing the car yesterday) and I feel completely wiped-out by the time I have finished – the car looks great, though!

I finish the day with a trip to the allotment to water the vegetables plants (it hasn’t rained for at least a week, and everything is looking in need of a good drink), and then collapse in front of the telly with a beer (to recuperate).

2018-06-17 – Father’s Day.

Father’s Day, and I have received cards from my son (who is currently in Australia) and my daughter (who is currently in Edinburgh).  My wife is working again today, so I prepare to keep myself busy by washing my car.  Dark clouds loom ominously while I am out walking the dog this morning, and a few drops of rain fall while I’m getting my bucket of soapy water ready, but half an hour later it has passed over and I can continue with my planned activity.  I have washed and dried the car by the time my wife returns from work – I have also completely exhausted myself to the point where I don’t even have the energy to argue when my wife says that she’ll take the dog for her afternoon walk.

We pay a visit to my wife’s parents this evening so that she can give him his Father’s Day presents, and we spend a couple of hours chatting and helping him to drink his Father’s Day beers.

2018-06-16 – Practising guitar.

I’ve been very lazy today.  My wife spent the day in her workshop, working on a loose cover that she has been getting stressed about, while I post links on Twitter and Instagram to the latest of my weekly vlogs, walk the dog (twice) and spend most of the rest of the day practising guitar.

I really need to wash my car – I am driving my wife’s niece (and her pal) to their school prom next week, and want the car to be nice and shiny for them.   My free time is going to be greatly reduced next week what with physiotherapy on Tuesday morning and attending Doctor Frank D’Ambrosio’s meeting in Parliament on Wednesday, and I don’t want to find that I get to Thursday and still haven’t done anything about it!  I’ve pencilled it in for tomorrow, weather permitting.

My wife returns from work late this afternoon, and we decide to get some groceries from Lidl in North Walsham, before sitting down in front of the telly for a couple of hours.

2018-06-15 – A beneficial effect.

It’s now a week since I turned the left hand side voltage down on my neurostimulator, and it has had a beneficial effect on my eating problems.  I am still catching the inside of my mouth with my teeth when I’m chewing, but only about 10% of the time, and with much reduced impact.  Prior to making the adjustment I was biting myself around 80-90% of the time, with enough force to draw blood, so my mouth is a whole lot less sore than it was a week ago.

On the negative side, I have a lot more tremor breaking through on my left side – particularly in my left leg, but I’ll just have to put up with that for the time being.

It is (perhaps) possible to modify the programming of my device to control my tremor without causing me to bite the inside of my mouth, so I’ll mention it next time I go for a DBS tune-up.

2018-06-14 – I’m champing at the bit.

I’m champing at the bit to know if my neighbours have spoken to their son-in-law (a doctor) to see if he can shed any light on my doctor’s change of heart over prescribing me exenatide.  So, after taking the dog for her morning walk, I prepare an invoice for them (for a blind that my wife ordered for them) and, using this as an excuse, drop in on them .   It turns out that they haven’t yet spoken to their son-in-law, wanting to choose their moment.  They sense my impatience (although I try hard to conceal it) and promise to speak to him before the weekend.

I check on the allotment (it’s been very windy overnight, and I was concerned that the runner beans could have blown over) – the runner beans have survived and everything is looking okay, so I harvest some rhubarb (to give to my neighbour – bribery and corruption!) and deliver it to them on my way back home.

I receive an email (with train tickets attached) inviting me to attend “an event” in Parliament next week – Doctor Frank (who has previously published an article about me, and interviewed me for his social media channels) has organised a presentation to MPs about the benefits of medicinal cannabis, and would like to present me as a case in point (amongst others who have been prominent in the campaign for the legalisation of cannabis for medicinal purposes). Could be interesting!

I practice guitar for as little while, get the washing in from the washing line, water the seedlings that are waiting to be planted out on the allotment, and then run the vacuum cleaner around downstairs before my wife gets home from work.

2018-06-13 – No word…

There’s no word from my neighbour today – I was hoping that he would have spoken to his son-in-law (who is a doctor) to see if he could fathom out why my doctor has had a change of heart over prescribing exenatideoff label” for me.  I’m dying to ask him about it (I’m not the most patient of people) but I don’t want to pester my neighbour…

I pay yet another visit to the allotment this afternoon (combining it with walking the dog), harvest some rhubarb and take the tops out of the broad bean (fava bean) plants which (I have read) are delicious to eat.

On returning home i hang out the washing (that my wife put in the washing machine this morning) wash the broad bean tops and put them in the steamer ready for cooking this evening, and then practice some guitar, using a YouTube video to teach me the chords and strumming patterns for Wreckless Eric’sWhole Wide World“, which gives me confidence that I will be able to learn to play it properly by the time my wife’s birthday comes around (as challenged!).

2018-06-12 – The motorised exercise bike.

I have a physiotherapy appointment this morning, and I am going to try using the motorised exercise bike that they have at the North Walsham cottage hospital.  I had been told they these bikes are not suitable for forced exercise because they are not capable of sustaining 80 to 90 revolutions per minute, but I feel that I need to do something to try to build some leg muscle – I’m increasingly concerned about muscular weakness in my legs, and I really struggle to get to my feet, especially when I have been sitting on the floor.  I spend just 15 minutes on the cycle, and manage to sustain well in excess of 100 revolutions per minute, although that is mainly my effort and not the bike’s motor.   I make another appointment for next week when I’ll be using it for a longer period – it’ll be interesting to see if I can manage to keep up cycling at that rate for half an hour or more…

I’m still fuming over my doctor’s refusal to prescribe me exenatide, and I’m not sure what (if anything) I can do about it – I think I need to understand the reason for his refusal.  I assumed it was because of the cost, but I did some research online, and it costs roughly the same as common Parkinson’s drugs (Sinemet or Madopar). I discuss the situation with one of my neighbours today, and he offers to ask his son-in-law (who is a doctor) if he can shed some light on the matter, so I guess I’ll wait to hear back from him before doing anything.

I wander down to the allotment when I take the dog for her afternoon walk, and spend half an hour edging one or two of the vegetable beds and doing a little light weeding – it makes me feel that I haven’t been completely lazy today.

2018-06-11 – Gutted!

I’m more than disappointed, I’m gutted!  I rang my doctor’s surgery this morning and made arrangements for my doctor to phone me after morning surgery to discuss the letter from my neurologist asking him to prescribe exenatide for me.   I received a call from him just after lunchtime, and he started to sound little bit evasive about prescribing the drug, and said that he would have to speak to someone in the prescription service about it, because it wasn’t licensed for Parkinson’s Disease.   Okay, but that’s not news to either of us – I already explained that it was only bring trialled for PD, and it was he that suggested (without even being asked by me) that if my neurologist were to write to him suggesting that it could be worth a try, then he would be happy to prescribe it to me “off label” (i.e. for a condition other than that for which it has been approved).  So why the change of heart?

He called me back a couple of hours later to say that he had now spoken to someone in the prescription service, and that he couldn’t prescribe it for me because there was insufficient evidence of benefit for my condition.  He did, however, say that he would write to my neurologist to ask her to write me a prescription for exenatide which could them be filled here in Norfolk.  I won’t be holding my breath.  I need to have a think about how I respond to this news, but suffice to say I’m extremely p*ssed off!

2018-06-10 – No right to feel tired.

We have no right to feel tired today – we were in bed before midnight last night, and we didn’t get up this morning until almost 11am.   I have a very relaxed morning (what’s left of it) lounging around on the sofa drinking my tea and nutriblast (prepared by my wife) whilst my wife is busy doing some laundry, sorting out summer clothing and putting our winter clothing away until it’s needed again.

We take a drive into North Walsham this afternoon, to get some beer and groceries from Lidl, and for my wife to do some clothes shopping in Roy’s (amazingly, she finds some jeans that she likes and that actually fit her).

We return to Southrepps, and decide to do some more work down at the allotment (the sun is shining), so we wander down there with wheelbarrow, watering can, trays of seedlings and the dog.  We spend a pleasant couple of hours hoeing, weeding, planting and watering, while the dog lies in the shade cast by the wheelbarrow.

2018-06-09 – Busy Saturday.

We’ve had a busy Saturday today.   I construct the fireguard and vacuum downstairs while my wife drives to Hevingham first thing this morning to collect our eldest granddaughter and bring her over to Southrepps for a couple of hours (to give her parents a break).   My wife takes our granddaughter down to the children’s playground by the village hall, while I take the dog for her morning walk.  It’s not long before we have to take our granddaughter to be reunited with her mother at the school swimming pool in Aylsham, and then we pay a visit to Tesco (for essential provisions) before returning home to Southrepps.

The afternoon dog walk is combined with a trip to the allotment, where we spend a couple of hours hoeing and weeding and preparing a couple more beds for some more seedlings.   I return home feeling exhausted, leaving my wife to finish what we started.

I must have slept awkwardly last night, because I was woken by a stabbing pain in my right hip this morning.  It has been painful all day (not helped by kneeling down to do some weeding at the allotment).   After dinner I decide to apply some beer and cannabis for pain relief – most effective!

2018-06-08 – My eating problems.

I thought that my eating problems (whereby I keep biting the inside of my mouth when chewing) were over, following my discovery (10 days ago) that I had used the incorrect settings on my neurostimulator.   Certainly there is little doubt that my problem has been exacerbated (if not caused) by my DBS, and the new settings that I am currently using are a vast improvement, but I’m still biting the inside of my mouth.

I am grateful for small mercies, though, and I’m no longer biting myself with quite so much vigour so, although it is still painful, I am no longer drawing blood each time I do so.  I think I’ll try turning the voltage down by a couple of clicks on the left side – so my device settings are now 2.80 volts on the left, and 2.45 volts on the right.  I’ll monitor my left leg tremor and my chewing issues!

2018-06-07 – A copy of my neurologist’s letter.

At last!  I received my copy of my neurologist’s letter to my doctor this morning.  It’s two weeks to the day since I had my appointment with her, but I feel as though I’ve been waiting for this letter for much longer.  As promised, the letter requests (very nicely) that I be prescribed exenatide, and recommends dosage, precautionary measures, and warns about potential side effects.   I ring my doctor’s surgery to see if I can talk to him about it, but the surgery hasn’t yet received their copy, which is a bit of a bummer – I agree to phone back next Monday, when they should have received their copy of the letter and my doctor will have had a chance to read it.   While I’m in a phoning mood, I phone the neurology department at the Norfolk and Norwich hospital to make an appointment – I want to be properly assessed on the Unified Parkinson’s Disease Rating Scale (UPDRS) at the beginning of my treatment with exenatide so that I can be reassessed in 12 month’s time to see if my Parkinson’s Disease has progressed.   I manage to get an appointment at the end of July, which isn’t great but is better than nothing.

I’m fighting sleep again this afternoon, so fight it off by practicing some guitar and taking the dog for her walk.  My wife and I are babysitting for our youngest granddaughter this evening, so I leave the house around 4.30pm to drive over to Hevingham, stopping at Tesco in Aylsham (to buy some beer and nibbles) on the way.

2018-06-06 – A little more guitar practice.

I sleep well, but I’m still not really feeling very rested.   I don’t feel very motivated, either, but the dog pesters me to take her for her morning walk, so I take her.  When were return home, I read The Metro online, and then decide to have a little more guitar practice – progress is slow and my fingers are stiff on the frets, but I think that I have improved since last week, which is encouraging.  I’m still a hell of a long way from being able to play “Whole Wide World“, mind you!

Tiredness is overwhelming this afternoon, and I pay a visit to my neighbour (after taking the dog for her afternoon walk) for a cup of tea and a chat to take my mind off falling asleep (which works).

I run the vacuum around downstairs and stick some Cajun chicken in the oven (for our dinner) before my wife gets home.  After dinner we take a wander down to the allotment to check on the plants, do a spot of weeding and administer some water (or would have, had we remembered the watering can) – everything looking good and healthy down there!

2018-06-05 – Another appointment.

Another day, another appointment.  This time it’s with the physiotherapist at North Walsham cottage hospital so, after drinking my tea and nutriblast and walking the dog, I drive to North Walsham.   I have a scant 15 minutes with the physiotherapist, but we make another appointment for next week, when I’ll be allowed to use the motorised exercise bike that they have there – it’s not really suitable for “forced exercise” use because it isn’t capable of achieving the necessary 80 to 90 revolutions per minute, but it’s better than doing nothing at all.  My legs are getting extremely weak, and I’m struggling to get to a standing position when I’ve been on my knees (weeding) down at the allotment, so I need to do something to strengthen the muscles.

I’m really struggling with fatigue today, and it’s all I can do to keep my eyes open this afternoon – I haven’t been doing anything very strenuous, so I can only put it down to my Parkinson’s.  I spend a little while practising guitar, and then take the dog for her afternoon walk – both activities prevent me from falling asleep!

Another early night is on the cards, I think.

2018-06-04 – A waste of space.

Another appointment with the Parkinson’s nurse this morning, so I’m up early, tea drunk and dog walked by 8.30am.  I drive to the cottage hospital in North Walsham and spend 20 minutes telling the Parkinson’s nurse what a waste of space Parkinson’s UK are (she agrees with me 100%).  I come away with some contact details for some local Parkinson’s groups that she thought I might like to get involved with – I’ll call their coordinators and have a chat, but if they’re anything like our biggest charity (Parkinson’s UK) then I won’t waste my time on them.  I feel that I could (and, perhaps, should) get involved with some fund raising for local people with Parkinson’s, but if our biggest charity are not prepared to get involved with us, then I’m damned if I’m going to raise money to put in their coffers.

I return to Southrepps and take a wander down to the allotment to see how the seedlings that were planted yesterday are coming along.  It rained last night, and today there is fine drizzle in the air, so the seedlings are looking pretty good – my wife will be pleased.   I drop in on some neighbours on the way back home – I promised to help the wife of the couple learn to use her iPhone, so I drink tea and scoff cake while teaching her how to send text messages and emails.  Time for the dog’s afternoon walk, and then I vacuum downstairs before my wife gets home from work.

I feel I have done something useful today (although to you it probably seems like very little) and my mood is a major improvement on last week.

2018-06-03 – Allotment!

As predicted, I’m very tired after our late night last night, and we have a bit of a lie-in, not getting out of bed until almost 10am.   We decide to attend to our allotment today, so we drive to our local garden centre in North Walsham to buy some vegetable plants, and then spend a sunny afternoon down at the allotment, hoeing, weeding and planting stuff.  We plant out two different varieties of cabbage, some sprouting broccoli, courgettes (zucchini) and some runner beans (my wife constructs two wigwam like structures for the plants to grow up, using bamboo canes).  We hoe until we can hoe no more, and weed around the broad (fava) beans, spinach, strawberries and raspberries.  I return home, knackered, while my wife works on.

A hot bath and some cannabis eases my aches and pains, and an early night should help with the fatigue (hopefully).

2018-06-02 – Dinner guests.

Saturday, and my plans to panel in the side of the bath fall by the wayside.  We have dinner guests this evening – my wife’s parents are coming over, so we go shopping (Lidl and Sainsbury’s in North Walsham) for the ingredients for a green Thai curry and sticky toffee pudding.

When we get back to Southrepps, my wife gets busy preparing the meal while I take the opportunity to practice some guitar.

We have a very pleasant evening with my wife’s parents, eating, drinking, chatting and listening to music from the 1960s – I’m going to be tired tomorrow, though – its midnight before they leave to go home, and it’s after 1am by the time we get to bed.

2018-06-01 – Learning the guitar.

I have the usual Friday things to do.  I have my everyday routine of tea, nutriblast, PopMaster and dog walking, plus researching, scripting, filming and editing my weekly vlog.  I have been given a challenge by my wife, designed to motivate me to pick up the guitar again.  She has challenged me to learn to play Wreckless Eric’sWhole Wide World” and to perform it for her on her birthday in December this year.  I didn’t get very far with learning the guitar when I first started (over 10 years ago), because my tremor had started to make life difficult for me.  As tremor increased, so my guitar playing decreased until I gave it up altogether about 8 years ago, and my guitar has been gathering dust since then.  I decide that it’s been such a long time that I may as well get right back to basics and re-learn all of the scales and chords, so I pick up my guitar and get learning while my video is copying from my camera to my laptop ready to be edited, and again while my finished video is uploading to my YouTube channel.  It’s a start!

2018-05-31 – Exhausted before I’ve lifted a finger.

Once again, I’m exhausted before I’ve lifted a finger, which doesn’t bode well for the rest of the day.   I planned on doing some work towards paneling in the bath in the bathroom – my wife wants to finish off the tiling in there this weekend, and there’s little point in mixing up a load of tile adhesive unless the bath panel is ready to be tiled.  I make a start on marking out where the framework needs to be secured, but that’s as far as I get.  Tomorrow I will be busy with my weekly vlog, so I guess I’ll be doing it on Saturday now.

I empty the dishwasher, tidy up in the kitchen and then take the dog for her afternoon walk.  I start work on the script for my vlog, but don’t get very far with it by the time my wife gets home.  We watch a little telly and then catch an early night.