Author: Ian

Another week rolls on by without my physiotherapy.  It’s probably just as well this week, because I’m still aching from my bilge pump exertions at the weekend, but the whole point of having physiotherapy was that it made me do the exercise whether I wanted to or not – I’ll have to message my contact in the physiotherapy department at the North Walsham cottage hospital to see if they have arranged for the motorised exercise bike to be repaired yet.

I ring my neurologist’s secretary at the Norfolk and Norwich hospital to chase up the letter that he promised to write to my doctor, asking him to prescribe exenatide to me.  It turns out that he has written to him, but neglected to send me a copy (as he said he would).  Hopefully I will now receive a copy in advance of my appointment to see my doctor this Friday.

I visit the allotment (after the afternoon dog walk) and harvest some kale and raspberries.  The weeds are threatening to take over, so I hoe between the kale plants and the courgette (zucchini) plants – my legs are still a bit stiff, so I must return to clear the weeds up in the next few days.

My aching muscles are still aching, and every movement is painful so I’m taking it very easy today (just for a change!).  I’m accompanying my wife to one of her customer’s this afternoon – she has Parkinson’s and is very interested in seeing my tremor control video, so my wife is hanging her new curtains for her and I’m going to have a chat and show her some YouTube videos.

I intended to go to Wayford Bridge (straight after meeting my wife’s customer) to check on the boat and make sure that the bilge pump is working as it should, but I forgot – I’ll add it to my list of things to do tomorrow.

I walk the dog, clear up the mess that I’ve made in the kitchen, and then vacuum downstairs before my wife gets back from work.

I’m in a fair bit of pain today, especially my legs.  This is the price that I pay for replacing the bilge pump on our boat yesterday.  I feel as though I ran a marathon, when when all I did was spend a couple of hours on my hands and knees – the payback is completely out of proportion!

I spend most of the day sitting on the sofa in the lounge, although the dog is not denied her two walks and I do wander down to our allotment and harvest a bag of spinach.   I also drive to North Walsham to do our weekly grocery shop in Lidl – my wife is at work today (as she was yesterday) and it’s not fair to expect her to do the shopping as well.  I even prepare our evening meal (well, I turn the oven on and chuck in a couple of ready meals!).

I have arranged to go to see our friend (the one who is battling Crohn’s Disease and the aftermath of cancer) to help her organise her diet and supplements regime – it’s quite complicated when you have to avoid certain combinations of foods, but we eventually come up with with a daily diary that she can print out and work her way through, thus ensuring she doesn’t forget to take anything, (or take something twice).

I drive over to Wayford Bridge to have a go at sorting out the bilge pump problem on our boat, assuming that the engineer hasn’t turned up in the meantime and fixed it (he hasn’t!).   I spend a couple of hours on my hands and knees, up to my elbows in oily bilge water, trying to find out why the bilge pump isn’t working, and eventually come to the conclusion that the pump has burnt out.  I acquire a replacement pump from my brother (who just happens to have a spare one on his boat) wire it up and test it (successfully).  I’m still not happy with the float switch (a device that turns the pump on when the level of bilge water reaches a certain point) because it seems a little temperamental, so I’ll order a replacement to fit next week.  I return the portable bilge pump that I borrowed from Bank Boats, and cancel the engineer – that’s saved me a few quid, even if I am tired and aching.  I seem to have aggravated my sciatica through my boat repairing contortions, and I spend the drive back home in moderate agony.   I have some cannabis to alleviate the pain when I get through the front door, and a good soak in a hot bath helps, too.

I’m up and scripting my weekly vlog without delay this week – my vlog usually takes me the whole day to produce, but I need to take a couple of hours out to drive over to Wayford Bridge and make sure that our boat is still floating (the automatic bilge pump isn’t working at the moment, and there is a slow leak where the steering gear pierces the hull).  It’s also my daughter’s birthday today (23 years, where did they go?), so I make sure to send her a birthday message on Facebook, and check that her presents have arrived (they have).

I manage to write a script, film myself (without too many retakes), edit and upload it to my YouTube channel by 3pm, which is quite an achievement (for me).   I drive over to our boatyard, pump out the bilges (still no engineer – I’ve almost given up hope!) and return to Southrepps in plenty of time to publish my vlog and post links to it on social media before my wife gets home from work.

I need to get my daughter’s birthday card posted off to her, and her birthday presents ordered before lunchtime (so that they are delivered tomorrow), so this morning (after walking the dog) I spend an hour or so online and order a necklace and some perfume for her, sign her card and put it in the postbox.

My wife calls me mid-morning to ask me to go to see our friend (the one who is dealing with Crohn’s disease and the aftermath of bowel cancer and the subsequent chemotherapy) – she’s not in good shape at the moment and needs some help and support, so I drive over to see her and we sit and have a chat over a cup of tea.  She’s still freaking out at the thought of taking an illegal drug (medicinal cannabis), even though her consultant seems to have hinted that perhaps she should try “a herbal remedy” without going into any more detail – I think it’s criminal that the law currently prevents him from just coming out and saying “cannabis might help you”.  She wants to try making some dietary changes that have been suggested to her, so we make a shopping list and I drive into Norwich to visit Rainbow Wholefoods and an Asian food stall in the covered market, where I’m able to purchase almost everything on the list.

I make a detour to Wayford Bridge on the way back to our friend’s house, to check on the boat and pump the bilges out (still no sign of an engineer).

I have to go to check on our boat again today, just in case the engineer (who said that he would take a look at the electrical fault this morning) didn’t make it – it’s pouring with rain here, which isn’t exactly going to inspire anyone who has to work outside.

I get the usual essentials out of the way (including a dog walk in the rain), and then drive over to Wayford Bridge, where our boat is moored.  The bilges are swimming with river water (and a little rainwater, I guess – the engineer hasn’t been) so I rig up the portable bilge pump that I borrowed from Bank Boats yesterday, and pump them out into the river.

I know (from experience) that there’s no point in chasing up the engineer (we are in Norfolk, after all, so I shouldn’t be surprised that everything, and everybody, runs on Norfolk time), so I guess I’ll be pumping out the bilges on a daily basis until he’s been and sorted it out for me.

I return to Southrepps, take the dog for her afternoon walk, and drop by the allotment to harvest spinach, kale and raspberries.

I need to attend to an electrical fault on our boat today, because the bilge pump isn’t working at the moment, and that’s just a recipe for disaster!  I drink my tea and nutriblast whilst ordering a birthday card for my daughter online, and then take the dog for a quick walk before gathering a few electrical tools and a freshly charged battery and making my way over to Wayford Bridge.

The bilges are filling up with river water (there’s a slight leak where the steering gear pierces the hull) so I’m under pressure to get this sorted.   I check all the fuses that I can find but they are all intact, and I’m fast coming to the conclusion that the pump itself has given up the ghost.  I pop next door to Bank Boats to borrow a portable electric pump, and use it to pump the water from the bilges back into the river where it belongs.   I arrange for someone to take a look at the fault on our boat (hopefully tomorrow), and then return to Southrepps, where the dog eagerly awaits another walk.

It’s a Bank Holiday here in the UK, so my wife suggests going out on our boat.  I’m not feeling very inclined to do anything today, but at least it’ll get me out of the house for a few hours.  We drop into Lidl in North Walsham for supplies, and meet up with my wife’s youngest son, his wife and our youngest granddaughter at the boatyard in Wayford Bridge.

We motor slowly down the River Ant to Barton Turf, where we are joined by our camping friends from Brighton, and my wife rustled up tea, coffee and bacon butties for everyone.   We lounge around eating, drinking and chatting, and then have a leisurely trip back up the river to Wayford Bridge, spotting kingfishers and a heron on the way.

I discover there’s an electrical fault on the boat, just as we are getting ready to leave for home, which means that the bilge pump isn’t working.  I can’t locate the fault, so it looks like I’ll be visiting the boat with some tools and test equipment tomorrow…

We have invited our friends over for dinner this evening, so today is a whirlwind of cleaning, tidying and cooking (for my wife, at any rate).  While my wife is busy, I make a start on the GoFundMe campaign that I’m setting up to help our friend who is ill.  I spend hours writing up her story (and I’m quite pleased with the result), but then I somehow manage to lose half of it, so I’m annoyed with myself.  Hours of wasted effort!

Our friends from Brighton arrive, and we manage to scoff a huge lasagne, lemon cheesecake, two bottles of red wine and a couple of cans of Stella Artois – a good evening!

We have visitors today – our friends from Brighton (who are camping in Baconsthorpe) are coming over after lunch to see us.   We spend the morning cleaning and tidying the house, and then pop into North Walsham to do some grocery shopping at Lidl.  Our friends arrive (with dog in tow) so we take the dogs for a run in the field by the village hall before retiring to our cottage for cups of tea and a chin wag.

This evening we are invited to dinner at their camp site (a curry cooked on a camping stove – very adventurous!) so we head over to Baconsthorpe at the appointed time, and have a fabulous meal, a few drinks and great company.

I make an early start on my weekly vlog today – some good friends of ours are travelling up from Brighton and staying on a camp site a few miles down the road from us in a village called Baconsthorpe – they are hoping to arrive mid-afternoon, so I want to have finished working on the video in case they drop in for a cuppa en-route.

I choose to vlog about alcohol and Parkinson’s Disease this week, because it’s an easy option, so I soon have a script prepared and proceed to film myself.  Filming and editing are accomplished without too much drama, and I finish work at around 4pm.

Our friends have had a nightmare of a journey (Bank Holiday weekend traffic) and so drove straight to their camp site to put up their tent – we agree to meet up tomorrow afternoon.

I upload my vlog to my YouTube channel, publish it and post links to it on Facebook and a number of online Parkinson’s forums before taking the dog for a walk and then sitting on the sofa to await the return of my wife.

I have a couple of bits of paperwork that I want to get out of the way this morning.  Simple enough, you might think, and I agree that it sounds that way but I’m having trouble with apathy and motivation (courtesy of Parkinson’s Disease), and I’ve been trying to get this paperwork completed and posted off for months and months now.

Mugs of tea, my nutriblast, PopMaster and the morning dog walk are all accomplished before I manage to get off my backside and locate the forms.  I quickly complete them, write a cheque to accompany one, address envelopes and take them to the post office – job done!

We are going over to Hevingham this evening to have dinner (it’s my wife’s youngest son’s birthday today) so were drive over there this evening (via Tesco in Aylsham for some beer) and spend a few hours eating, drinking, chatting and being entertained by our granddaughters.

It’s a beautiful warm and sunny day in Southrepps, and I spend the morning psyching myself up to go down to the allotment and cut the grass pathways.  Around lunchtime I wander down there, get the mower out of the shed and make a start on it.  The job takes me over an hour (it would have taken me less than 20 minutes in my pre-Parkinson’s days) and I’m as hot and sweaty as a very hot, sweaty thing by the time I finish.  While I’m there, I dig up the broad bean (fava bean) plants, and that’s me finished (literally) for the day.

I stagger back home to collapse onto the sofa, where I remain (recovering) for the rest of the afternoon.  I had intended having another go on the mini motorised exercise bike today (because I didn’t exercise for very long yesterday) but I can’t summon up the energy required – tomorrow, perhaps.

My physiotherapy has been cancelled until further notice, possibly permanently.  The motorised exercise bike, which has been making funny clanking noises from time to time, has broken down and requires repair.  Since this piece of equipment was donated to the physiotherapy department, there isn’t a maintenance contact that includes it, and nobody wants to take responsibility for it  So where does that leave me?  It leaves me with no physiotherapy, that’s where!

I try using the mini motorised exercise bike that I purchased a few months ago.  I manage to do about twenty minutes, which is better than nothing, but I really need to mount it on a substantial piece of board because the unit is too lightweight and tends to move around when you’re trying to use it.

I pay a visit to the allotment when I take the dog for her afternoon walk, and harvest some spinach, kale and a load of raspberries.  The grass pathways are desperately in need of mowing, so perhaps I’ll do that tomorrow if the weather stays fine.

I spend most of the day researching the process for applying to the government’s expert panel to acquire cannabis-based medication on prescription.  I already did a certain amount of research a couple of weeks ago, when I did my weekly vlog on the subject, but I wanted to go through the application form that my doctor has to complete to make sure there isn’t anything that I need to do prior to my appointment with him on the 7th September.   I do have a concern that the guidelines for applying state that the clinician must be listed on the General Medical Council’s specialist register, and I’m not sure that my doctor qualifies on this basis.  My neighbour (who I bump into when I take the dog for her afternoon walk) tells me that the doctor is a skin specialist and that he holds a clinic at Cromer Hospital (which appears to satisfy the criteria for being listed on the register), but I can’t find any evidence of this on the General Medical Council’s website.  I guess I’ll find out when I actually attend the appointment!

We decide to spend a little time chilling out on our boat today – not actually going downriver (it’s fairly breezy, and that doesn’t make for stress-free boating – unless you have a sailing boat, which we haven’t) but sitting aboard, drinking tea/coffee and listening to music.  So, we get in the car and drive over to Wayford Bridge, and I spend a few hours relaxing while my wife cleans the boat from top to bottom (it’s virtually impossible to get her to sit down and just do nothing).  My wife’s mother drops in for a cuppa and a chat (bearing gifts of scones, butter and jam, so she was welcomed with open arms) and then we head back to Southrepps for some dinner (soup), a beer, some cannabis and several episodes of Friends on Netflix.

Today we are spending some time with a friend of ours who has had bowel cancer and, following surgery and chemotherapy, is now left with Crohn’s Disease, peripheral neuropathy, depression, anxiety and obsessive compulsive disorder (OCD).  Her consultant recently told her that cancer markers in her blood were slightly elevated, and predicted that her cancer would return within 12 months.  Understandably, she freaked out – she’s a young thirty-something woman, married with two young children, and the thought of not being there for her husband and her boys is unthinkable.   I recently gave her some high potency CBD oil that really helped with her anxiety and OCD, and she has since tried whole cannabis and been astounded at the positive effects on her Crohn’s and neuropathy, especially since she was very much against using an illegal substance, and sceptical of the claims of medicinal value.  In the few weeks that she has been using cannabis, she has managed to wean herself off tramadol, diazepam, morphine, sleeping tablets and anti-sickness pills, and feels a whole lot better.   I managed to get her to talk to a contact of mine in Canada (an advocate for medicinal cannabis) who has recommended a course of full extract cannabis oil, the only drawback being the cost – £3,000 for three months treatment, a sum that is completely out of their reach at the moment.  I have suggested trying to raise the cash through an appeal on GoFundMe.com and, despite some initial resistance, we agreed that I will launch an appeal on their behalf (they really couldn’t cope with “coming out” about her cannabis use – the stigma is too great, and they have to consider their children).

I’m agonising over the subject matter for my weekly vlog.  I can’t decide between “Transcranial Direct Current Stimulation for Parkinson’s Disease” and “Alcohol and Parkinson’s Disease” – the alcohol one is the easy choice (due to my direct personal experience), but I eventually decide on the other one (because I’ve never heard of it before, and I like to learn).

Researching and scripting seems to take forever (it’s very complicated, and difficult to summarise in a 5 minute video), so I’m running well behind schedule today – my wife doesn’t get home from work until 8pm, and I only just finish the editing by the time she comes through the door.  I upload the vlog to my YouTube channel and publish it while my wife prepares a meal for us, then post links to it on Facebook and a number of forums after we have eaten.

Frequent heavy showers of rain prevent me from mowing the grass down at the allotment (as planned) today, so I’m confined to the house (aside from when the rain lets up enough for a dog walk).  I resume my search online for the best Gatwick car parking and hotel deals for our holiday in a couple of months time.  I book car parking on the airport with Gatwick Parking – not the cheapest, by any means, but it does mean that I can be fairly certain that nobody will be racing around in my car while we’re away (because I’ll have the car keys with me) and when we get back from holiday we won’t have far to go to collect the car.  I shortlist several hotels in the vicinity of the airport (our flight time means that we would have to leave home at about 4am to be fairly certain of being at the airport in time, so we decided it would be less stressful to drive down the previous evening and stay in an hotel local to the airport) – I’ll let my wife choose where she’d like to stay.

There’s a gap in the rain late in the afternoon, so I take the opportunity to walk the dog again, then have a quick tidy up and vacuum downstairs before the boss gets home.

I’m tired out from my physiotherapy session yesterday, not helped by a poor night’s sleep.  The dog drags me around the field by the village hall after I’ve got the mugs of tea, nutriblast and PopMaster out of the way, but apart from that I’m happy just to be vegetating on the sofa.  I spur myself into action around lunchtime, hang out some washing in the back garden and clear up the mess (of my making) in the kitchen.

Another sit down is required, and I’m fighting off sleep.  I combine the afternoon dog walk with a visit to the allotment, harvesting some more kale and spinach (and a handful of raspberries) to go in our nutriblasts tomorrow morning.

Tea, nutriblast, dog walk and PopMaster, and then it’s time to head off to North Walsham cottage hospital for my weekly physiotherapy session on the motorised exercise cycle.  It’s a little cooler this week, so I manage to cycle for a full 60 minutes.  After I finish, I pop into Lidl for some snacking items (biscuits, nuts, tortillas) and a couple of bottles of Hobgoblin beer, and then return to Southrepps.

Home again, I sit down to recover from the exertion of my physio, and then tidy up the kitchen, load the dishwasher and vacuum downstairs before my wife gets home from work.

Dinner, a little television (Friends on Netflix), a couple of beers, some cannabis and an early night.

I’m lacking motivation at the moment – I have a number of fairly trivial tasks that I want to complete, but just can’t make myself get up off my backside and do them.  The dog forces me out of the house to take her for a walk, and then I hang some washing out to dry in the back garden, so at least I feel that I have done something other than sit in the lounge vegetating!

I attend to several messages that I have received on social media, and then take the dog out for her second walk of the day.  My wife arrives home from work, we have some dinner and then sit down to watch a few episodes of Friends on Netflix.  Cannabis and an early night follow.

My wife departs for work this morning, and I sit on the sofa in our lounge posting links to my latest vlog on Twitter and Instagram (and doing very little else).  I do walk the dog, tidy the kitchen and vacuum downstairs, so I’m not completely without purpose.

My wife returns home mid-afternoon, and we wander down to the allotment together to take a look at the veggies.  We decide to call it a day (allotment-wise) once we have harvested this year’s crop – it’s a tremendous amount of work (that is mainly left to my wife) and we really don’t devote enough time to it.  The amount of money that gets spent on seeds, equipment and so on, it’d be cheaper to buy the vegetables in the supermarket.  I guess it would be different if there was a water supply at the allotments, but as it is, once the water butts are empty (and they’ve been empty for weeks and weeks) then all water has to be carried from the house – something that I don’t have the energy for, and which my wife doesn’t want to be doing after a long day at work.

My wife is working all weekend (again), so I spend the morning catching up on the news (reading The Metro online), walking the dog, and responding to comments on social media.  There’s a knock on the door around lunchtime, and it’s my neighbour, asking me if I’d like to join him for a classical guitar recital up at Saint James’ Church – it’s Southrepps Classical Music Festival this week.  Classical music isn’t really my thing, but I do enjoy a well played guitar and it seemed churlish to refuse his kind offer, so I strolled up the road to the church with him.  The guitarist was extremely adept, but the choice of music was pretty obscure (to my ears, at least) and it really wasn’t my thing.  Still, it passed away an hour or so…

I wander down to our allotment when I take the dog for her afternoon walk.  The recent rainfall has had a quite dramatic effect, and there is a whole load of produce awaiting harvest, so I pick some kale, spinach, runner beans, French beans and a handful of raspberries.

My wife calls to say that we have been invited to dinner by her youngest son and his wife, so I jump in my car and drive over to Hevingham (via Tesco in Aylsham for some beer, nibbles and a dessert).

I’m vlogging about the Coimbra Protocol today (at the request of one of my vlog followers), something that I had never come across before (but is basically high doses of vitamin D3 for autoimmune diseases), so I spend a large portion of my day learning about the protocol, and then condensing it to a script that will result in about 5 minutes of vlog.  I have the worst time ever filming myself (I’m really unhappy with the way my voice is at the moment – high pitched, husky and indistinct in spite of my best efforts) – I usually regard it as acceptable if I manage to film my vlog in less than 40 takes, but this week it takes me 79!  Luckily the editing is straightforward and I manage to get it uploaded and published just as my wife arrives home from work.

We have a ready meal (Thai green curry) for dinner, and then I spend the evening posting links on Facebook and various online Parkinson’s Disease forums.

The British Summer has returned!  We awoke to the sound of rain on the windows, and it has rained steadily (non-stop) all day.  The temperature has plummeted as well, so it was no hardship to put on an overcoat and wellies when I left the house to take the dog for her walks.  I had a disturbed night last night (my wife didn’t sleep well, so I woke up every time she was restless), so I’m not feeling great today.  I avoid anything of a physical nature, and spend the majority of the day attending to some online account updates that I have been putting off, and thinking about a subject for this week’s vlog (I still haven’t decided on one).

After dinner I pour myself a beer (Hobgoblin), vape a little cannabis, watch a couple of episodes of Friends on Netflix (I didn’t watch it originally because I hated the canned laughter – I’m obviously mellowing with age) and get an early night.

I don’t achieve anything this morning, aside from the usual dog walk.  I don’t feel rested and have no “get up and go” despite having had a reasonable night of sleep.  I plan to clean the carpet (actually, it’s a big rug) in the lounge this afternoon, so I vacuum downstairs, move the furniture out of the way and fill the carpet cleaning machine with cleaning fluid.

I clean the carpet in two sessions, giving the carpet time to dry and giving me the chance to recover from the exertion.   By the time my wife returns from work the carpet is cleaned and almost completely dry and I have moved the furniture back into position.  Not too bad for someone who is lacking “get up and go”!

I forgot to secure the batteries on the boat when I was there yesterday morning, so I drive over to Wayford Bridge before going to North Walsham cottage hospital for my weekly physiotherapy appointment.  I wouldn’t normally make a special trip for such a trivial matter, but It’s important that the batteries are secured for the Boat Safety Scheme certificate, and it’s due to be inspected any day now.  I quickly secure the batteries, and get back in the car to drive to North Walsham (just in time to catch PopMaster on the car radio).

I’m still tired and aching this morning, so I take it little easier on the motorised exercise bike, stopping after 45 minutes (I managed an hour last week).

I return to Southrepps feeling shattered and sweaty, and take it easy for the rest of the day, paying some bills online and searching for accommodation and parking convenient to Gatwick Airport for when we go on holiday in a couple of months time.

I’m tired, stiff and aching all over today, but particularly in my left hip and leg.  I don’t recall having over-exerted myself over the weekend, so I guess it’s just Parkinson’s Disease letting me know that it’s still there.

I phone my doctor’s surgery to make an appointment to discuss applying for medicinal cannabis on prescription, so that at least I have set the ball rolling.

I take the dog for her morning walk after I finish drinking my tea and Nutriblast, listen to PopMaster and then load the freshly charged boat battery into my car and drive over to Wayford Bridge.  I refit the boat battery and start the engine, which now seems to be charging the battery as it should do.  It’s a beautiful day to be down by the river, but there’s not enough of a breeze to make the heat of the sun more bearable, so I don’t hang around for very long before making my way back to Southrepps.

This afternoon I combine the dog walk with a visit to our allotment. I really need to mow the grass pathways, but I’m not feeling up to it at the moment. I harvest some spinach, kale, French beans, runner beans and a courgette (zucchini), then wander back home for a sit-down.

We had a decent night of sleep on the boat, although I was awake at around 6am.  We have breakfast and mugs of tea/coffee before my wife takes the dog for a walk, and then we decide to motor back up the River Ant to Dilham (just for a change).

It’s a beautiful sunny day, and the river is quiet (considering it’s the beginning of August).  We eventually arrive at Dilham and moor up at the public staithe.  The dog and I find a nice shady spot to sit in, and my wife spends her time cleaning the outside of the boat.  Were have a moment or two of panic when the boat fails to start (seems the main battery has insufficient charge) but we get going when I swap the main battery over with the auxiliary battery – I’ll have to have someone take a look at the engine and sort this out.  We take the flat battery home with us to charge, and I plan to return to the boat tomorrow to refit it.

My wife treats me to a couple of pints of Abbot Ale in The Vernon Arms this evening, and then we watch a bit of telly before getting another reasonably early night.

We are spending the night on our boat tonight, so this morning is spent cleaning and tidying our cottage (so that we don’t come home to a mess) and getting stuff together that we need/want to take with us to the boat (I confess that my wife does the lion’s share!).

We drive over to Wayford Bridge (where our boat is moored) via Lidl in North Walsham (to buy food and drink), load our gear onto the boat, fill the water tank with fresh water and set off down the River Ant at a very leisurely pace.  We decide to spend the night at Barton Turf, so we shower, walk the dog, eat dinner and then relax by watching a film (Saving Grace) before getting a reasonably early night.

My wife suggests that I vlog about the process that you need to go through in order to obtain access to cannabis related medicines on prescription, so my day is spent researching and scripting the ludicrous hoops through which sick people are expected to jump in order to access medicine that is both effective and safe.

I apologise for banging on (and on) about cannabis, but this is important.  Sick people (who know that cannabis can help them) are being denied legal access to this medicine on the grounds that there haven’t been sufficient studies to prove its efficacy for various ailments.  Of course there haven’t been enough studies – our government have denied that cannabis has any medicinal value, and placed it in Schedule 1 so that it is nigh on impossible to carry out these necessary studies.  The people who use cannabis medicinally (and I am one) know that it is effective for them, and at last the government has admitted that it does have medicinal value (by rescheduling cannabis-derived medicines into Schedule 2, whereby your doctor is allowed to prescribe them), but obtaining these medications on prescription is a complicated and lengthy process designed to be daunting and offputting – and all of this for a plant that is known to be massively less harmful than either tobacco or alcohol.  It makes me angry, and it ought to make you angry, too!

I’m meeting my younger brother this morning to sign some paperwork (and have those signatures witnessed) relating to our mother’s estate – the chap who owns the boatyard next to where our boat is moored at Wayford Bridge, is a Justice of the Peace, so he has said that he’ll witness our signatures.  After getting the paperwork out of the way, I wander over to our boatyard to make sure that our boat is okay.  I make sure that the bilge pump is working and run the engine for a little while to ensure that the battery is fully charged and then head back to Southrepps for a sit down.

After dinner my wife and I sit down to watch “Run From The Cure” on YouTube – the story of Rick Simpson, a pioneer of medicinal cannabis.  I have watched excerpts of the film before, but never watched it from start to finish – the quality isn’t great, and it’s very dated, but it’s definitely thought-provoking, and a recommended watch.  I can hardly wait for The God Plant documentary to be sold to a broadcaster – I watched it again this afternoon, and it really is an excellent film which needs to be shown to the general public.

I’m feeling very tired today, probably as a result of my physiotherapy session yesterday.  I also have a persistent headache which has been with me (on and off) for several days – I always worry when I get a headache (which is, thankfully, a rarity) because of the DBS hardware in my head, but it’s more than likely due to the continuing high temperatures we are having in the UK at the moment.

I get my daily exercise from my dog walking excursions, and spend some time shelling broad beans (fava beans) and making a kind of seafood and broad bean risotto for our evening meal.  It’s not as tasty as I would like, but my wife says it’s nice – I’m pretty sure anything would taste nice to her, just because she hasn’t had to prepare it (for a change).

It’s a lot cooler today, and much rain had fallen this morning, so I am able to cycle for a full hour on the motorised exercise bike at my physiotherapy appointment this morning.  I’m not noticing any apparent improvement in muscle strength in my legs, but my performance on the exercise bike seems to be improving week by week, so I shall continue with the physio for as long as I am offered the facility – it can’t be doing any harm, can it?

I have a number of emails, social media and forum messages that I need to respond to, so my afternoon is spent replying to them, punctuated by taking the dog for a stroll and vacuuming downstairs before my wife returns from work.

We have some more heavy rain showers today, but it is still extremely warm and humid.  I’m feeling the effects of a couple of relatively busy days, and a late night last night, so I’m not up to doing very much and spend much of the day just sitting on the sofa in our lounge.  The dog (of course) ensures that I do get out of the house and have some sort of exercise.  I combine our afternoon stroll around the field by the village hall with a visit to the allotment – the vegetables are looking remarkably good considering the long dry spell we have had, and there are French beans, runner beans and courgettes (zucchini) that will be ready to harvest in the next few days.  I pick the remainder of the broad beans (fava beans), harvest some spinach and a few sticks of rhubarb and head back home for another sit-down.

It’s wet in Southrepps this morning, and a little cooler than it has been of late, which is good news for the veggies on our allotment, which have been dying of thirst (because I have lacked the energy to carry water up there – there isn’t a water tap at the allotment, and our water butts were emptied weeks ago).

I receive a message from the friend we delivered the medicated chocolate brownies to yesterday – she’s eaten a piece of brownie and she’s no longer in pain, which is absolutely fantastic.  Her husband says that he can’t believe the effect it’s had, and that it’s been a long time since he’s seen her so happy and relaxed.  Our government told us that cannabis has no medicinal value and is a dangerous drug – the only danger it poses is to the profits of pharmaceutical companies…

My wife’s father had his 75th birthday yesterday, and so my wife and I meet up with her parents in The Vernon Arms this evening to give him his present and buy him a beer or two (or three, or four…).

I’m making cannabis edibles (for a friend with multiple health issues) this morning – delicious chocolate brownies made with the cannabutter (cannabis infused butter) that I prepared a few days ago.  I try one out before I give them to my friend (to assess how strongly they are medicated – it’s a bit hit and miss when you have to buy your raw ingredient from an unregulated market; another good reason for legalisation) and I’m happy that I have produced something that is effective.

We go to deliver the goods, and then head over to the Hevingham Music Festival to join my wife’s sons, partners and our grandchildren for a little while – we bale out just before the weather changes, driving back to Southrepps through some pretty heavy rain.

My weekly vlog is focused on cannabis (again), and the attitudes of those people who have been misinformed about its medicinal properties, so I manage to write a script for it straight off the top of my head (no research required).

The UK government announced yesterday that they will reschedule cannabis-based medicines within weeks.  That’s a great headline, and it is a step in the right direction, but it truly isn’t the end of the matter.  The government also seems determined to make it very difficult for anyone to qualify for medicinal cannabis, and to only permit pharmaceuticalised medicines, which is a complete nonsense – one of the best known cannabis-based medicines is Sativex, which (according to GW Pharmaceuticals, the manufacturer) is a whole plant extract with added alcohol and flavouring; what was wrong with just using the whole plant?   Profits, that’s what!  I’m afraid that UK policy on medicinal cannabis will be shaped by the fact that the government wants to appease pharmaceutical companies and party donors rather than do what is best for medicinal cannabis patients – time will tell, I guess…

We are awake early and getting ready for my daughter’s graduation ceremony at York University this afternoon.  I adjust my DBS neurostimulator, turning up the voltage on the left side by 0.3 volts (now 3.1 volts on the left side, the right side is unchanged at 2.45 volts) to take care of some troublesome tremor in my left leg – I must remember to turn it back down again later so that I don’t get any over-stimulation effects.  My daughter arrives, and we check out of our accommodation and catch a bus into the centre of York – we are taking her out to lunch at a tapas restaurant called Ambiente before we make our way to the university campus.  We have an array of tasty food to sustain us, and then return to collect my car and drive to the university.

The graduation ceremony goes smoothly and my daughter gets through it without any of her imagined disasters (tripping and falling over, headgear falling off, etc.) taking place – I’m a very proud parent!

After taking photos, my wife and I begin our journey home (this time without any traffic jams) arriving back in Southrepps around 11pm.

We are travelling to York today to attend my daughter’s graduation ceremony tomorrow, so the dog goes to my wife’s parents for a short holiday, and I spend much of the day preparing for the journey and ceremony.  I cut my hair, have a shave, get my suit out and check that it still fits me (it does), and get together all of the paraphernalia that we need to take with us – DBS controller, tablets, vaporiser, iPad, iPhone, chargers, etc., etc.

We get away almost as soon as my wife arrives home from work, and have an extremely tiring 5 hour journey, getting caught up in heavy traffic around King’s Lynn which resulted in us being delayed for an hour.  Finally we arrive at our Airbnb accommodation at a shade after 10.30pm, unload the car and fall into bed.

I’m off to North Walsham cottage hospital for another physio session on the motorised exercise bike this morning.  I am told to limit myself to 30 to 45 minutes, rather than my usual hour, because of the continuing hot weather, so I stop after 45 minutes.

I am feeling quite tired today, so don’t get up to very much at all when I get back home.   I finish making some cannabutter (cannabis infused butter) for making some cannabis edibles for the neighbour who was questioning me about the benefits of cannabis yesterday, then run the vacuum cleaner around downstairs.  I want to wash the dust off my car (we are driving to York tomorrow for my daughter’s graduation on Thursday, and I’d hate to let the side down by having a grubby motor), but it’s just too hot at the moment – I wait until after dinner, when the day is much cooler!

More questions (from people that we know) about cannabis oil, and whether it will help with this condition or that condition.  I’m not qualified to offer them the advice that they are seeking, but I know someone who is, so I message them on Facebook and set up a meeting on Skype, and everyone’s happy with that.

I have an appointment with my neurologist at the Norfolk and Norwich hospital this morning, so we drive into Norwich prepared for another fruitless encounter with him (the last time I saw him was prior to my DBS operation, and he really didn’t have anything of value to say to me).  This time I have some things that I want to ask him to do:

1. Write a letter to my doctor to ask him to prescribe exenatide for me – this is a type 2 diabetes drug that could, according to a recent clinical trial, arrest the progression of Parkinson’s Disease.
2. Assess my condition using the Unified Parkinson’s Disease Rating Scale (UPDRS) so that (if my doctor agrees to prescribe me exenatide) it can be compared with my condition in 12 months time to see if progression has been halted.

I was successful on both counts.  He put up mild resistance to asking my doctor to prescribe me a drug that isn’t currently licensed for Parkinson’s, but after I argued my point, he said that he wasn’t opposed to the idea and agreed to write to my doctor about it.   He printed out the forms to assess me on the UPDRS, but assessed me while I still had my DBS switched on which, of course, invalidates the result.  He really had difficult in accepting my assertion that he had wasted his time, but eventually he saw sense and agreed with me that he needs to redo my assessment with DBS switched off.   Unfortunately we didn’t have sufficient time to do this today, so I’ll be returning in a couple of months time…

All in all I think that I got the results that I wanted (so far), but I feel somewhat underwhelmed by this healthcare professional – I shouldn’t really have to be telling him how to do his job.

Today we are off to London.  I attended the funeral of an old friend a couple of months ago, and we are going to meet with a bunch of his friends to scatter his ashes in the garden that he used to love so much.   We drop the dog off at my wife’s youngest son’s house in Hevingham, and then drive to North Walsham where we grab a bottle of wine (to give to our hosts) and catch the train to begin the journey to Hither Green.

We arrive at Hither Green at a shade after 3pm, and get stuck in to some food, drink and conversation, before our hosts say a few words and our friends ashes are scattered amongst the beautiful flowers at the bottom of the garden.  It’s a real flying visit for us – our train journey home starts at 5.29pm from Hither Green station, so we say our goodbyes and begin our return trip to North Walsham.

We are both absolutely shattered by the time we have collected the dog from Hevingham and driven home to Southrepps, and it’s not even 10pm – it is time for bed, though!

We are going to a fancy dress party this evening – my wife’s eldest son’s partner is having a Hawaiian themed 30th birthday party.  We look after our eldest granddaughter for the morning (while her parents are busy organising the house for the party) and take her to the beach at Overstrand for a paddle in the sea and an ice cream, which meets with her approval!

We get togged out in colourful shorts and shirt (me), grass skirt (my wife) and leis (both of us), and head off to Norwich to join in the fun (although parties, especially fancy dress parties, aren’t really my thing).   We do, however, have a good time because there are loads of people there that we know (and haven’t seen for ages) and our grandchildren (of course) are providing much entertainment.  We return home at a reasonable hour and leave the youngsters to it!

My wife has another day off work today, and spends the morning cleaning the house around me, while I attempt to research and script my weekly vlog.  Luckily not a great deal of research is required because I am vlogging about medicinal cannabis, and how we (the general public) have been brainwashed by our government into believing that this medicinal plant is bad.

I bump into one of my neighbours when taking the dog for her afternoon walk, and he gives me good feedback for my appearance on Channel 4 yesterday, which is nice.

My wife spends the afternoon babysitting for our two granddaughters, returning home just as I finish my video and upload it to my YouTube channel – she watches it and gives it her seal of approval, which is also nice!

My wife has the day off work, and we decide to spend it working on our boat, so that it’s ready for use when we eventually get around to spending a few days aboard.  We load my wife’s car with the new boat fridge (which was, conveniently, delivered this morning) and head off to Wayford Bridge where our boat is moored.

I install and connect the new fridge whilst my wife is busy cleaning the shower room and the galley.  I book the boat in for it’s four-yearly Boat Safety check with the neighbouring boatyard, and get some invaluable advice on dealing with a leak from the engine’s water pump (it has been dripping steadily for the last year or two, but the drip has now become a steady stream).  I do as instructed (tighten the gland nut) and the leak is no more, so that’s saved us a pretty penny.  My wife puts the freshly laundered cushion covers back on the seat cushions and I run the vacuum around the cockpit – it’s looking good inside – we just need to spend some time cleaning and painting the outside now!

I spend much of the day researching and sending information to a contact on social media who needs advice on medicinal cannabis – this has been consuming a great deal of time just lately, and I’m beginning to think that it’s my calling!

I also post links to Facebook, Twitter and Instagram about a Channel 4 programme that airs this evening, and in which I appear, discussing the use of cannabis to treat my Parkinson’s Disease symptoms.

Once the heat of the day has died down (we are still having a heatwave here in the UK) I take containers of water down to the allotment in my wife’s pink wheelbarrow, water the vegetables and harvest some spinach and broad beans.

I watch the Channel 4 programme this evening, and am reasonably pleased with my contribution.

Tuesday is physiotherapy day, so I’m off to North Walsham cottage hospital (after drinking my tea and walking the dog) for an hour of cycling on the motorised exercise bike.  I have my brain thoroughly picked by the team of physiotherapists regarding medical applications for cannabis – it’s unbelievable (to me) that they really know nothing of the positive side of cannabis, but spout the usual nonsense that our government has brainwashed them with – I think it’s criminal that access to a medicinal plant is denied to sick people who could really benefit from it.  It angers me.

I decide to wash my car when I get back to Southrepps (I have hardly driven the car since I last washed and polished it for my wife’s niece’s prom, but it’s covered in a thick layer of dust) so I spend a busy hour or two with a bucket of soapy water and a sponge making it clean and shiny again.  Unfortunately, I also succeed in overdoing it, and I feel completely exhausted.  I intended taking some water down to the allotment to water the vegetables (it still hasn’t rained), but I cannot summon up the energy to do so.  Tomorrow, perhaps…

I have admin tasks to attend to today, which is just as well because I’m really not feeling up to doing much else.  I’m relieved of dog walking duties because my wife is taking her to the vet to have her annual booster injections, so takes the dog to work with her this morning.

I need to email my ex-colleague (the one that my wife and I had lunch with yesterday) with some photos that I promised her, and a whole load of links to podcasts on Cannabis Health Radio about medicinal cannabis and Multiple Sclerosis – she has a friend who has MS and could possibly benefit from cannabis, but who is afraid to try it, so wanted some reference material to assist in persuading her to give it a go.

My next two emails are also cannabis related.  One (to my physiotherapist) to recommend a vaporiser for her partner to try vaping cannabis to treat his PTSD, and another to another ex-colleague whose sister has stage 4 lung cancer and who contacted me wanting to find out about cannabis oil as a treatment for cancer (something that I know very little about, but was able to refer her to somebody who is a bit of an expert).

The remainder of the day is spent searching for a replacement water pump for the boat engine (the existing one is leaking quite badly now).  It’s an obsolete part for an obsolete engine, so perhaps I’ll end up having to have the existing pump reconditioned…

We have a busy day of socialising.  An old work colleague of mine is visiting Norwich, so my wife and I meet up with her at the Rushcutters Arms where we have a leisurely Sunday lunch and catch up with each other’s news.

After leaving the pub, we head off to my wife’s youngest brother’s house in Spixworth (via Morrison’s, to purchase beer and soft drinks) to attend the 16th birthday celebrations of my wife’s niece.  Virtually the entire family are there (including my wife’s sons, their partners and our two granddaughters) and a lengthy session of drinking, eating and chatting ensues.  By the time we leave for home it’s getting on for 8.30pm, and we don’t get through our own front door until almost 9pm.

I’m exhausted (again), so am early night is on the cards.

We decide that we are going to the boat today to give it a bit of a clean.  My wife is hoping to take a few days off work next week (if the weather stays nice) and so it would be nice to spend some time on the river, just chilling – if the boat is nice and clean, then it means we can concentrate on the chilling without feeling that we should be cleaning.  That’s the theory, in any case.  We take the freshly charged fridge battery with us (so that I can reinstall it), a pair of shears (so that I can cut down the nettles on the riverbank) and we set off to Wayford Bridge, where our boat is moored.

My wife does the hard work of washing down the outside of the boat while I refit the fridge battery and remove the fridge from the boat (we were given the fridge by my wife’s father last year, but I can’t get it to work, so I’ve ordered a brand new 12 volt fridge which should be delivered next week).  I remove the seat covers (to be taken home with us and washed) and also bale out the engine compartment (which has a couple of gallons of murky river water sloshing around in it) and then chop down the nettles that line the riverbank.

That’s it!  I’m completely knackered, and it’s all I can do to walk back to the car.  Home, dinner (prepared by my wonderful wife), a couple of beers and some cannabis.  Perfick!

It’s Friday the 13th (and I’m not superstitious).  I spend all morning and some of the afternoon researching sleep disturbance in Parkinson’s Disease, which is the chosen subject for my weekly vlog.  I learn quite a lot about this symptom, its causes and available treatments.  I don’t suffer too badly with disturbed sleep (unlike my mother, who used to be awake for half of the night, and could frequently be found in the kitchen at 3am, baking cakes) but I do find that I have difficulty in getting off to sleep, and I suffer with restless legs syndrome (RLS).  I treat both with cannabis, and find that this works well for me – I’d hate to suffer badly with disturbed sleep; I get very tetchy when I’m overtired.

As is usually the case, I learn something new about Parkinson’s when I am researching for my vlog, even when I think I know something about the subject before I start my research.  I have a hard time filming myself (again – it’s becoming a habit) so I am only just finishing the editing when my wife gets home from work.  I upload the video to my YouTube channel, publish it and post links to it on Facebook, Twitter and Instagram while my wife is busy making our evening meal.

Another day of taking it easy – I’m not quite as fatigued as I was yesterday, but I do still have a streaming cold.

I have a lengthy video call from my son, who is currently in Australia and wants to tell me all about his planned trip to Nepal and Sri Lanka later this month.  I also spend a good deal of time searching online for a suitable graduation gift for my daughter, who graduates from York University with a Starred First in Biochemistry this month.

When I take the dog for her second walk of the day, I also visit the allotment to harvest some rhubarb and a couple of handfuls of spinach.  I chop (very slowly and very carefully) and cook the rhubarb when I get back home, and also make a pint of custard – pudding for this evening!

I have a streaming cold today which, partnered with the fatigue that I’m experiencing, means that I don’t feel very much like doing very much (or anything, to be 100% accurate).

I receive a copy of Doctor Frank‘s new book (The A-Z Of Medical Marijuana) in this morning’s mail, which is a nice surprise, and it seems very readable (in spite of the small typeface, which I’m struggling with a little).

The dog drags me around the field a couple of times, but that’s about all the activity that I get until late afternoon when, ashamed of myself, I manage to motivate myself to wander down to our allotment to water the vegetables (still no rain, although it has been overcast today).  On return to our cottage, I vacuum downstairs before resuming my position on the sofa, sweating profusely from my exertions.

I’m still feeling a little below par, and don’t really want to go to North Walsham cottage hospital for my physiotherapy appointment this morning.  I force myself, though, because I think it’s important to improve muscle tone in my legs.  I spend an hour on the motorised exercise bike, and feel pretty knackered afterwards.  I had an interesting chat to a couple of the physiotherapists (one of whom recognised me from my YouTube video showing the effect of cannabis upon my tremor) about my speech in support of medicinal cannabis at the United Patients Alliance event last week, and about the many  conditions that people are treating with cannabis.  If only our politicians were as open minded as these health professionals!

I return to Southrepps, collapse onto the sofa and spend much of the afternoon fighting off sleep – I think the physiotherapy has taken it out of me.  I wake myself up (momentarily) by taking the dog for her afternoon walk.  I’m planning on another early night tonight.

I really have to go to the boat and fit the freshly recharged batteries today – I hate leaving it without any power on board because the bilge pump won’t be working, and that worries me.  So, after I’ve had my mugs of tea and my nutriblast, and walked the dog, I load the batteries into my car and drive over to Wayford Bridge, where our boat is moored.   As expected, the fridge battery that I connected yesterday (so that the bilge pump would be working) has completely discharged, so I connect the newly charged batteries and stick the fridge battery in the car to take back home for charging.  The boat engine starts really easily, and I leave it running while the bilge pump empties the bilges.  Next on the agenda is pouring the jerrycans of red diesel into the boat’s fuel tank, and in doing so I manage to slip and fall into a patch of nettles (which really hurts!).  Luckily my younger brother has turned up to help me, so he helps me to stand up and ensures that I don’t end up in the river (which was a distinct possibility).  I have nettle stings on my left arm and all the way up my back, but aside from that, I’m fine – just annoyed with myself for falling in the first place.

I leave the boat feeling happier about it having freshly charged batteries and a tankful of diesel.  Hopefully we can get some use out of it this year!

I wake up feeling somewhat ropey, but not as bad as I had feared – obviously the cherry schnapps did the trick!  We decide to go to our boat today – I have three 25 litre containers of red diesel in the garden shed which would be much better in the fuel tank of the boat, and it’s been such a long time since we checked on it.  We get to the boatyard in Wayford Bridge shortly after lunchtime to find that we are only just in time!  The batteries are completely exhausted, so the bilge pump hasn’t been working and there is a lot of water in the bilges – luckily the engine compartment hasn’t been completely flooded, so I swap over the fridge battery (which still has some charge in it) for the main starting battery (which is completely dead), and the bilge pump springs into action.  There’s not enough juice in the battery to start the engine, but at least it should reduce the level of river water in the bilges while I take the other batteries home to charge them.  We load the batteries into my wife’s car, and then drive around to Barton Turf to meet my wife’s youngest son, his wife and our youngest granddaughter, where we sit in a shady spot and enjoy a picnic and a chinwag.

We arrive home in the early evening and I get the batteries into the house and on charge while my wife busies herself washing her car.  Hopefully, there will be sufficient charge in the batteries to start the boat tomorrow.

I’m whacked, and I wake up with a sore throat this morning, so it looks like I’m coming down with a cold – terrific!  I’m not feeling like doing very much, in any case.  I post links to my latest vlog on Facebook, Twitter and Instagram, and then my wife and I drive to Longwater to buy some clothes in the Next sale (for my wife) and to buy some gifts for my wife’s niece (who is soon to have her 16th birthday) and also for our grandchildren (for no real reason – just because!).  Actually, it’s my wife that does the shopping – I’m feeling worn out from my London trip yesterday, and I’m also feeling lousy with whatever bug it is that I’m coming down with, so I stay sitting in the car for most of the time.

We call in on my wife’s sons on the way back home, just in time to catch the last half of England’s World Cup quarter final match against Sweden – I have no interest in football whatsoever, but I have to say that I did enjoy seeing England win their match 2 – 0!

Home again, I slump on the sofa (feeling sorry for myself) while my wife prepares dinner for us.  I’m planning on a couple of beers, some cherry schnapps (for my sore throat), some cannabis (to help me sleep) and an early night.

I’m up at 7.45am, drink 2 mugs of tea and a nutriblast, grab my essentials (car keys, DBS controller, camera, phone, speech and tickets) and I’m out of the house just a shade after 8.30am. I’m soon on the train from Gunton to Norwich, on my way to Westminster in London, where I have been asked to speak on behalf of Parkinson’s patients in support of medicinal cannabis at the United Patients Alliance event, Patients In Parliament.

I arrive in plenty of time (I’m the first person there), so can sit in the relative cool of the Houses of Parliament (it’s still a heatwave here in the UK – I hate to complain about good weather, but it’s almost unbearably hot outside).  Other people arrive soon enough, and the event kicks off just a few minutes after 1pm.  I am one of about a dozen people who have been asked to speak, and the audience consists of medicinal cannabis patients, MPs and parliamentary secretaries who will be providing input concerning the prescription of cannabis for medicinal purposes, so it’s important that the patient voice is heard.  I give my speech, which runs a little over the three minute limit, but nobody seems to mind, and it seems to be very well received (I lost count of the number of people who came and shook my hand afterwards).  We get turfed out of the meeting room shortly after 3pm, and everyone wanders down to Parliament Square where much socialising and photographing takes place.  I get asked to tell my story to camera by a film maker who is also a medicinal cannabis patient, and then I wander off to the Blues Bar in Soho to catch a little live music before catching my train back to Norfolk.  I roll through the door of our cottage around 11.45pm, completely knackered!

I am scripting, filming and editing my weekly vlog today, because tomorrow I will be travelling to London to speak in Parliament on behalf of Parkinson’s patients, in favour of the legalisation of cannabis for medicinal purposes.

I select a subject, research it online and write myself a script.  I have a difficult time filming myself because my voice is so bad – retake after retake, and I’m now starting to worry that my voice will let me down tomorrow, which will be a real bummer!  I’m really not satisfied with the video – it’s just as well that I put subtitles on my videos, because even I would struggle to understand myself without them.  I finish editing it, upload it to my YouTube channel and schedule it for tomorrow evening.

I spend the evening preparing everything for tomorrow – tickets, hardcopy of my speech, directions to the event…

I need to refine my draft speech for the Patients In Parliament event this Friday – I take into account my wife’s comments, and then time myself reading it to ensure that I’m neither too wordy or too brief.  It takes me a shade under three minutes to read it (the target is three minutes) so that’s okay.  I then film myself reading it, and manage to add about 30 seconds to it, but I’m sure that’ll be alright.

I go to see my neighbours, who have volunteered to give my speech a critical review.  After much speech reading (and quite a lot of tea drinking), we agree on some subtle changes, and I return home to edit my script.

I run the changes past my wife when she gets home, and she approves, so now I just need to work on the rhythm and speed so that it flows nicely and I don’t run out of breath and start strangling my sentences – an added complication that I could do without, frankly.

It’s time for another session on the motorised exercise bike, so I’m off to North Walsham cottage hospital after I’ve had my tea and walked the dog.  I manage a solid hour of cycling at between 80 and 100 revolutions per minute, and feel as if I’ve had a proper workout – the current heatwave isn’t helping!

I tackle some domestic chores when I get back home – emptying the washing machine, having the washing out to dry, and ironing some of the stack of clothing that is waiting to be ironed (I’m feeling guilty about my wife doing everything, especially since she hasn’t had a day off work in over three weeks now).  Finally, I vacuum downstairs before collapsing onto the sofa to work on scripting my speech in preparation for the Patients In Parliament event this Friday – I have a finished draft by dinner time, and my wife reviews it and declares it fit for purpose (with a couple of minor revisions) so that’s a relief.

I don’t feel quite as bad as I thought I was going to feel today – I’m still exhausted, though, and I don’t think that the current heatwave that we’re experiencing is helping (not that I’m complaining – give me “warm and dry” over “cold and wet” any day of the week).  My voice is the only outward sign of my fatigue, and it’s weak, husky and slurred, despite my attempts to make it otherwise.

I take the dog for her morning walk, and then spend the rest of the morning thinking about (and researching) the speech that I have been asked to make (on behalf of Parkinson’s patients, in support of medicinal cannabis) in Parliament this Friday.

I have received an email from My Dreams To Reality (the company that, in conjunction with Patient Zero Productions, have been working on The God Plant documentary about cannabis) giving me access to a screening of the film, so I sit down and watch it (with one of my neighbours who was interested to see it) this afternoon.  I’m very pleased with the way that it has turned out, and delighted that they have used so much of the footage that they shot at our cottage last year.

I round the day off with another dog walk and then run the vacuum around downstairs.

I decide to do some work down at the allotment today, while my wife is at work.   So, after drinking my tea and nutriblast, and walking the dog, I load my wife’s (pink) wheelbarrow with pots of seedlings and a watering can full of water and wander (slowly) down to our allotment.

I spend a couple of hours hoeing, weeding, planting out seedlings and watering some very thirsty plants (we haven’t had any rain for a couple of weeks, and the ground is starting to crack up).   I return home about half an hour before my wife arrives home from work – it’s only then that I realise that I might possibly have overdone it.  I wasn’t exactly exerting myself, but I find myself staggering slightly on the walk back home, and almost collapsing onto the sofa – it takes me a good hour to recover sufficiently to get up off my backside.  I expect I’ll be feeling a little bit sore tomorrow.

I start thinking about my 3 minute speech in Parliament this Friday, and begin my research – I don’t want to find myself still writing it on the train to London!

I’m still feeling fatigued, so I’m taking it easy (again) today.  My wife is working all weekend (again) so I decide to deal with some administrative tasks that I can accomplish online from the comfort of the sofa.  I pay the river licence for our boat and settle the invoice for our Calor gas delivery before taking the dog for a stroll around the field by the village hall.

Last week I received an invitation from the United Patients Alliance (UPA) to join them for an event inside the Houses of Parliament next Friday.  I declined the invitation (the event was to do with the legalisation of medicinal cannabis) on grounds of cost, but today I receive a message from the UPA offering to pay my travel costs if I would be prepared to speak on behalf of Parkinson’s patients. Naturally I agreed, so now I need to have a think about what I want to say, and prepare a script for myself (or at least a list of bullet points).  I book my train tickets for next Friday, take the dog for her afternoon walk and then have a quick tidy-up and run the vacuum around downstairs before my wife gets home.

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.

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.

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.

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…

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.

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.

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).

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).

 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.

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.

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.

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).

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.

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.

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).

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.

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.

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.

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.

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 exenatide “off 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’s “Whole 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!).

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.

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!

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.

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!

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!

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.

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!

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.

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.

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).

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.

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’s “Whole 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!

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.

I’m still overtired and under-motivated and feeling miserable (because I’m not achieving very much, and because I’m still biting the inside of my mouth when I’m eating, and it’s very sore).  I feel that I’m biting myself a little less this morning, but the inside of my mouth is so swollen that it’s difficult to tell.  I resist making any further changes to my DBS settings.

I have set myself a very simple task today (to fill out some forms that the speech therapist sent out to me, for inclusion in a LSVT trial) but it’s late afternoon by the time I manage to persuade myself to do it – I do complete the form, though, and all that remains is to get my wife to read the information sheet and see if she wants to be included in the trial (as a carer) and then return the completed form to the speech therapy department.

Other than that, I walk the dog (twice) and vacuum downstairs – That’s all, folks!

I’m thoroughly worn out at the moment, and I ache – not sure if it’s because I’ve been working down at the allotment, or just symptoms of my Parkinson’s Disease.  Whatever, its extremely debilitating.  I have planned to do as few things today – none of which are physically demanding, but I just can’t get myself to get on and do them!  The essential routine tasks (dog walks – two of) are completed, but I manage to do very little else.

I am still biting the inside of my mouth, and the incidence is becoming more frequent, so I decide to adjust the voltage on my neurostimulator.  It’s only when I go to make the voltage change that I notice I am using group “B” settings (my old settings that caused my eating problems to intensify) instead of group “A” settings (the ones that my neurologist amended last Thursday) so it’s little wonder that I’ve been having problems!  I switch my service back over to group “A” settings, and will have to let these settings “soak in” for a couple of days before making any further adjustments – let’s hope for a reduction in my chewing issues.

I complete some paperwork relating to my mother’s estate (which I have had for several months now, and had only partially completed), so now I just have to get my youngest brother to sign it, have the signatures witnessed by a Justice of the Peace and get it posted off.

It’s another Bank Holiday Monday, and we have very untypical Bank Holiday weather – the sun is shining and the sky is clear and blue.   Our expected visitors do not materialise today, presumably because the call of the beach was so strong.

I think that my recent DBS adjustments are causing me problems – I have noticed that the problem I had with biting the inside of my mouth when chewing, has returned and I also have lower back pain that I attribute to muscular tension caused by over-stimulation.  I will give it until tomorrow, and then make some setting changes if things haven’t improved by then.

My wife and I drive to North Walsham to do some grocery shopping in Lidl, and also for my wife to have her eyes tested, and then we spend some time down at the allotment, weeding between the spinach, carrots, beetroot and radishes.