Month: August 2018

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.