Month: September 2018

It’s vlog day, and I’m vlogging about Restless Legs Syndrome (RLS), which is something that I’m reasonably familiar with!   Whilst I’m writing my script about RLS, I’m also thinking ahead for the two extra vlogs that I want to do before we go away on holiday, and I come up with what I think would make a great video (I’m not telling – you’ll have to wait and see) but which requires participation from friends and family (and not many people like having a camera pointed at them!).  I test the water by asking one of my neighbours if she’d be prepared to be interviewed for one of my vlogs and, after some initial hesitation, she agrees.  Now I just need to think about who else I could rope in.

My voice is particularly bad at the moment (even my wife remarked upon it the other day) and I really struggle to make myself intelligible – rehearsing what I’m going to say, practising my breathing techniques, exaggerating my enunciation and trying to project my voice.  I have quite a lot of re-takes before I’m happy with it (and I’m still not 100% happy with it), and then manage to get the footage transferred to my MacBook, edited, uploaded to my YouTube channel and published by the time my wife walks through the door.

I spend most of the day researching topics for my weekly vlogs – I intend to film a couple of extra videos prior to our holiday next month, so that I can schedule them to be published whilst we are away.  I’m struggling a little with motivation, though, and by the end of the day I really am not much further forward than I was at the start.

Yesterday I promised one of our neighbours that I would give her a lesson on using her iPhone to send and receive email and text messages, so this afternoon I wander over to their house to (hopefully) impart the requisite knowledge.  The back garden is a sea of expensive electric tools (they are in the middle of constructing a conservatory), but there’s no sign of anyone.  The back door to the house is open, but there’s no response when I call out “anybody home?”.  Even their dog has gone AWOL!  After five minutes or so of hanging around waiting for someone to appear, I return home – the lesson will have to wait for another day.

I visit the allotment when I take the dog for her afternoon walk, harvest some runner beans, spinach and kale, and do a bit of weeding.  Back at home, I vacuum downstairs and then collapse onto the sofa, exhausted.

I’m having another day of loafing about.  I have decided to do some vlogs in advance of our holiday (so that I can schedule them to be published whilst we are away), so I start researching a subject today.  I had a difficult time getting to sleep last night because of restless legs syndrome, so my wife has suggested that I vlog about that this week.  I hadn’t realised it could also affect the arms until last night, but it really was most uncomfortable, and something I could definitely do without.

One of my neighbours knocks on the door to ask for my assistance in constructing a scaffold platform, so I go across the road, help him to construct the platform, and have a cuppa and a chat with him and his wife.  While I’m up off my backside, I look around for something that I can achieve around the house.  I noticed yesterday (when I went into the loft to look for a trailing socket) that the loft hatch is just about to fall off its hinges (the hinge screws have been loose for quite some time), so I get the stepladders out, some new (longer) screws, and my electric screwdriver, and replace the hinge screws.

I receive a phone call from a television production company about a programme they are making for Channel 4 about cannabis, and they would like me to take part because of my use of cannabis to alleviate the symptoms of my Parkinson’s Disease.  I’m definitely interested in taking part, but it looks like they want to film while we are out of the country (on holiday) next month, which is a bit of a shame – I like to be involved in anything that raises awareness of PD and/or medicinal cannabis.

I’m not feeling very energetic or motivated, but I really don’t want to just sit on the sofa all day, so I decide to do a couple of easy jobs around the house.  After drinking my tea and nutriblast, walking the dog and listening to PopMaster, I clean the bathroom sink, then have a (successful) search in the loft for a trailing electrical socket so that my wife can plug her computer in at her end of the sofa.  I give the dog a much needed grooming, tidy the kitchen and vacuum downstairs.

I have a good video chat with one of my Facebook friends in British Columbia about the legalisation of cannabis over there, and the state of the UK’s drug laws.  It’s a little disheartening to hear that it has been legal for medicinal purposes in Canada since 2001, but the stigma surrounding this medicine still exists – it makes me realise what a long road we in the UK still have to travel.

I have a day of recovery, following our shopping trip to Norwich yesterday.  I sit quietly in the lounge of our little cottage and add a few items to my “To Do” list.

My wife and I plan to try following a ketogenic diet, following my research into the benefits for people with Parkinson’s for my vlog a couple of weeks ago – my wife doesn’t have Parkinson’s, but she wants to support me, wants to lose some weight (although she really doesn’t have any excess weight to lose) and it’s less hassle if we are both eating the same meals – so I spend some time this afternoon looking at recipes and foods that are recommended for the diet.  When my wife gets home from work, we go shopping at Lidl in North Walsham, and stock up on keto-friendly groceries.  We still have a few days work of non-keto food that we need to finish off, but at least we can gradually start getting used to the change in our diets.  We will be abandoning the diet when we go away on holiday next month, but we will resume it on our return (there should be some excess weight to lose by then!).

My JustGiving campaign gets a bit of a boost this evening – someone makes a donation of £100.  I’m gobsmacked at the generosity of people, and my friend (who I’m raising money for) is completely overwhelmed when I contact her to tell her.

There have been more donations to my JustGiving campaign when I check on progress this morning, which is great.  I need to figure out a way to maintain this without simply bombarding my friends and relations with requests for money.   I share the video story (that I made for the JustGiving page) on my personal Facebook page, and another couple of donations roll in.

My wife and I go into Norwich this afternoon, because we need to buy some clothes for our holiday next month.  It’s pouring with rain, so (thankfully) it wasn’t too crowded.  Because we wanted to buy Summer clothes, we were able to get some end of season bargains, and we’re both rather partial to a bargain.  After a couple of hours I’m shattered (even though I spent much of the time sitting down in a chair outside the changing rooms while my wife tried on most of the shop), and we head back home.

I’m feeling a little anxious about the JustGiving campaign that I launched yesterday – what if it’s a total failure?  Our friends are not the kind of people who sit out with a begging bowl, but I do know that they are not exactly flush with money and that they are currently running up a credit card debt that they simply cannot afford – and all because of the legal status of a plant!

She has been taking full extract cannabis oil for the last three or four weeks, and the improvement in her symptoms is dramatic.  She has weaned herself off a selection of pharmaceuticals, and feels better than she has felt in a long time.  She first started using cannabis around the start of the school Summer holidays, and it’s the first time in four years that she hasn’t spent at least some of the holiday period in hospital.  Her consultant (who has previously suggested to her that she might find some relief from using a “herbal remedy”) remarked that her inflammation seemed to have reduced, when he reviewed pictures taken during a colonoscopy that she had last week.  It’s just a coincidence (I hear our government cry), but I’m no great believer in coincidence – things happen for a reason.

By the end of the day, there is over £150 in donations, and I breathe a sigh of relief – there’s still a long way to go, but it’s a respectable start.

Today I am launching a JustGiving campaign for our friend who had bowel cancer and has Crohn’s Disease.   Not only do I want to make this the subject of my weekly vlog, but I want to create a video to go on the JustGiving page as well.  Martha Orbach (the artist that we got to know when I was having my DBS operation) has said that she will provide an illustration of hers to go on the page – I promised (some time ago) to record a video of myself walking (she wants to study a Parkinson’s walk so that she can mimic it in an animation she is doing about Parkinson’s Disease and deep brain stimulation) so I really want to get that done today, too!

I already have a script for the JustGiving video (it’s the story that I have written to go on the campaign page), so I quickly film myself reading the script, and then take my camera and tripod out into the street so that I can film myself walking.

I write the script for my vlog whilst downloading the JustGiving and walking footage onto my MacBook, and then film my vlog (with quite a large number of retakes – my voice is still sounding pretty rubbish – indistinct and slurred).

Buy the time my wife gets home from work, I have edited the JustGiving video and my vlog, uploaded them both to my YouTube channel and published them – the walking video (which is very straightforward) is a job for tomorrow.

After dinner, I post links to my vlog on Facebook, Twitter, Instagram and half a dozen online Parkinson’s forums that I’m subscribed to, and sit and wait for the donations to come rolling in…

I’m determined to write the story for my JustGiving campaign today, so I spend the morning sitting on the sofa writing it.  I send a copy to our friend (for whom we are trying to raise funds) for her approval, and am extremely glad that she’s happy with it.

My car is going for its MOT today, so this afternoon I drive to the garage (Duff Morgan) on the outskirts of Norwich, and sit in the waiting room whilst they check the car over.  Happily, it passes without needing any remedial work, so that’s out of the way for the next 12 months.

I have a few messages on social media that I need to respond to, so that takes up quite a lot of my morning.  Then I have a couple of letters to write to Norman Lamb (my MP) about my intention to apply for medicinal cannabis.  He messaged me last week to give me his support in my application, and offered to give me an official letter if I wanted to draft one for him to review and sign – so I draft a letter from Norman to my consultant neurologist at the Norfolk and Norwich Hospital, and email it to his assistant for review and signature.  I also wanted to write to him about a couple of issues that will affect my application, and which I want him to question the Home Secretary/Home Office about, so I craft a substantial email with all of the relevant information in it, and send it to him.

I receive a phone call from East Bilney Coachworks (the bunch of cowboys that performed a bodywork repair on my car) about the state of the paintwork and they offer to rectify it (again!  This will be the third time they have had my car back).  We disagree over the provision of a courtesy car whilst my car is with them, so I decide to call my insurance company and let them deal with it.  After over an hour and a half of being passed from department to department and being put on hold, my call gets disconnected.  Very frustrating, and I decide to try again tomorrow.

I have an appointment to have my ears syringed this morning, so after PopMaster I get in my car and drive to my doctor’s surgery in Aldborough.  Ten minutes after arriving, it’s all done and I can hear again!  I was really struggling to hold simple conversation before, so it’s a real relief – it should also help my balance (which hasn’t been great recently).

I book my car in for it’s annual MOT test, and then call the paintshop that performed a bodywork repair (four years ago) that has (so far) been back twice for remedial work – it’s still not right, and is going to require returning for a third time.   I’m not happy, and the manager of the paintshop knows it – he promises to call me back this afternoon or tomorrow morning.

I cross two items off my “To Do” list!

I achieve two things today.  The first one is a “To Do” list – something that I’ve been trying to accomplish for a number of days now.  The second one is that I manage to cross the top item off the list – it’s time to change energy providers because our fixed price tariff for electricity expires in under a month.  So, I research the best deal using Moneysavingexpert’s Cheap Energy Club, and fill out the necessary application form online.   I get the expected emails to confirm that my application has been received and that the process of changing electricity supplier is now underway.

The rest of the day is spent doing very little, aside from walking the dog.  I’m feeling quite isolated at the moment, although the isolation is of my own making.  My hearing, which has been an issue for some time now, has deteriorated rapidly over the last couple months and I’m having the greatest of difficult in following simple conversation – it’s easier to isolate myself than feel like an idiot, so that’s what I’ve been doing.   I have an appointment with the nurse at my doctor’s surgery tomorrow morning to have my ears syringed, so hopefully that will sort this out!

My wife suggests that I take it easy today, to recover from my busy day yesterday.  I don’t need to be told twice, and so I’m taking it easy for most of the day, while my wife clears up the birthday cake fallout in the kitchen, does the laundry and generally straightens things out in our little cottage.

This afternoon we walk down to the allotment to do some weeding and hoeing, and harvest some spinach, kale, courgettes (zucchini) and raspberries.  We are only down there for an hour, but it exhausts me completely – I expect I’ll be aching for the next couple of days.

We finished watching all 10 seasons of Friends on Netflix the other evening so, just for a change, we spend the evening doing a jigsaw puzzle – it’s been years and years since I did one, and it made a refreshing change from sitting in front of the telly.

It’s our eldest granddaughter’s birthday party today (she turned 3 yesterday), so my wife spends the morning finishing the Frozen themed birthday cake that she has made, while I walk the dog and then loaf about on the sofa.

We drive over to the village hall in Hevingham, and enjoy a chaotic couple of hours.  Scratby Donkeys are there with a couple of ponies (one of them disguised as a unicorn, and used to give rides to a succession of delighted children), a very tame goat and a beautiful owl that had the most amazing orange eyes.

We go back to my wife’s eldest son’s house afterwards for a barbecue, sitting in the garden until well after darkness has fallen.

I sent a Facebook message to my Member of Parliament (Norman Lamb) last week, reminding him who I am (we both appeared on the Victoria Derbyshire show about medicinal cannabis), informing him that I intend to ask my neurologist to apply to the Home Office’s “Expert Panel” for medicinal cannabis on prescription, and asking him to  support this application.

I received a reply from him this afternoon, and he has stated that “I strongly support your position” and has offered to give me an official letter stating that fact.  I’m really pleased, because I think it makes it less likely that my neurologist will simply refuse to make the application.

I don’t think that I have a snowball’s chance in hell of being prescribed medicinal cannabis, because the process (for applying for medicinal cannabis on prescription) put in place by our government is intended to be so complicated and have so many conditions attached to it that nobody will ever actually qualify.

This is why it is so important to make the application – to highlight and publicise the fact that the official process doesn’t work for patients.  Since the government made the headlines by announcing that cannabis would be legalised for medicinal purposes, the general public believe that this is the case.  The sad fact is that, in reality, absolutely nothing has changed for the vast majority of medicinal cannabis patients – all medicinal cannabis patients apart from two little boys (who shamed the government into making their announcement), in fact.

And that was always the intention of this government.

I’m struggling with motivation again – the only thing I’m managing to do without too much trouble is taking the dog out for her walks.  I need to make a “To Do” list because I’m currently failing to do anything at all and there’s quite a lot that I need to do before we go on holiday next month.  I get my notebook out (as I did yesterday, with the same intent) but the page remains blank.

My car has been repaired, so this afternoon my wife drives me to Autowerke in Norwich so that I can collect it.

My wife and I return to Hevingham to complete the construction of our eldest granddaughter’s trampoline, which we started yesterday, and complete it (apart from lacing the safety net to the trampoline frame, which my wife says she will do).  I return to Southrepps to walk the dog and have another sit-down.

My car is going in for some minor repairs today, so first task this morning is to drive to the outskirts of Norwich and deliver the car to Autowerke.   My wife lends me her car for the day, so I return to Southrepps where I finish my (lukewarm) cups of tea and take the dog for her morning walk.

I do little else until the afternoon, when I walk the dog (again), have a tidy-up in the kitchen and then run the vacuum around downstairs.   Late afternoon, my wife calls to ask me to go over to Hevingham (to her eldest son’s house) to help her construct a 10ft trampoline (our eldest granddaughter’s present for her 3rd birthday this Friday) so that it’s ready for use when she (and the rest of the family) return home from CenterParcs on Friday afternoon.  We almost complete the construction work, but failing light makes us decide to finish it tomorrow.

Home, dogs fed, dinner, Netflix (Friends), a little cannabis and off to bed.

My wife’s two sons, their partners and our two granddaughters are on holiday at CenterParcs in Elveden this week, and we have been invited to join them all for the day.  So, we drop the dogs off in Hevingham (my wife’s eldest son’s neighbour is keeping an eye on them) and drive to Elveden.   We meet up with everyone (including my wife’s ex-husband, whose birthday it is today), have coffees, a snack lunch (including a chocolate birthday cake that my wife made for her ex), an afternoon in the swimming pool complex, and a pizza in Bella Italia (an Italian restaurant within the CenterParcs complex) before wending our weary way home (picking the dogs up on the way).

When we get back to Southrepps I have a video call from my son, who is in a departure lounge in Kuala Lumpur airport on his way back to Melbourne from Nepal and Tibet.   He has been out of touch for quite a while due to a distinct lack of phone service and Wi-Fi, and it’s good to have a chat and catch up.

I do very little today because I’m feeling spectacularly unmotivated.  The postman brings me more paperwork concerning my mother’s estate, so I sit on the sofa and read through it to see what needs to be done next.  I need to send more documents (identification) for one of my brothers, so I send him a text message so that he can dig out something for me to send.

My car is approaching its annual MOT test, and also has a couple of minor defects that need looking at, so I call Autowerke and get it booked in for Wednesday.

We are looking after my wife’s youngest son’s two dogs this week (while they are away at CenterParcs) so my wife returns home with them, and chaos ensues in our little cottage.  We take all of the dogs for a run around the  field by the village hall before we sit down to have dinner – hopefully they will settle down a bit now…

I spend the morning catching up on stuff that I usually do on Friday evening or Saturday morning – posting links to my latest vlog on Facebook, Twitter, Instagram and a number of online Parkinson’s Disease forums.

I’m not feeling much like doing much, but this afternoon my wife suggests a trip out to Cromer – principally to get some bits and pieces from Lidl.  So we drive to Lidl and do some shopping, but we also park up in the middle of town and have a little wander around the shops before they close.

I spend most of my day helping our friend (the one suffering with Crohn’s Disease and the aftermath of bowel cancer) to prepare her medicinal oil by mixing it with olive oil and sunflower lecithin so that it is ready to be used.

 She has only been taking the oil for 8 days, but she looks so much better already and she has her symptoms of Crohn’s Disease almost completely under control (which is more than the prescription meds were doing).  She’s going to see her consultant at the hospital next Wednesday, so it will be interesting (to say the least) to see what they make of her progress.

I fit my Friday routine around an afternoon appointment with my doctor today, so I am keen to get as far as I possibly can with my weekly vlog before I have to leave the house to drive over to Aldborough Surgery.  I research my chosen subject (infrared light therapy for Parkinson’s and Alzheimer’s) and write a script before I have to go.

I originally made the appointment for the purpose of requesting that my doctor apply to the Home Office’s Expert Panel for medicinal cannabis on prescription, but found out he wasn’t on the British Medical Council’s list of specialists (which is a requirement), so I decided to keep the appointment to discuss his reasons for refusing to prescribe exenatide to me, and also to find out the reason for my deteriorating hearing.  I recently saw my neurologist at the Norfolk and Norwich Hospital, and persuaded him to write to my doctor to request that he prescribe exenatide to me, so it’ll be interesting to see if he has changed his mind again (he offered to prescribe this drug to me “off label” if my consultant said it could be “worth a try”, so I got my neurologist in London to write to him, whereupon he changed his mind without offering me any explanation).  It transpires that he wanted to help me out, but the North Norfolk Prescription Service told him that he want allowed to, because there isn’t sufficient evidence that it’s effective for Parkinson’s – he has written to both neurologists telling them that he was unable to prescribe it, and suggesting that they could prescribe it to me instead.  I have an appointment with my Norfolk neurologist next month, so I’ll quiz him about this then.  My doctor checked my ears out, and it would seem that I need them syringing, so I make an appointment for ten days time.  I tell my doctor (out of courtesy) that I intend to ask my (Norfolk) neurologist to apply to the Expert Panel (because he is on the list of specialists) for medicinal cannabis on prescription, and he wishes me good luck!

Another day of lazing around.   My muscles have recovered from last weekend and I no longer wince when I move, but I just don’t feel inclined to do anything.  I spend the day researching online fundraising websites, decide on JustGiving, and setup an account.

I want to create a campaign to raise money for a friend who is embarking upon a cannabis oil treatment for her Crohn’s Disease/bowel cancer, but the last time I tried to do so (on GoFundMe) my campaign was suspended because it involved an illegal drug.  This time I’m careful not to mention the treatment that she’s having, and the campaign is to raise funds for “other expenses” rather than the treatment (which she and her husband are now funding by drawing cash against a credit card).  Hopefully this will be allowed!

I have a day of doing almost nothing.  I have absolutely no drive to do anything.  The dog drags me out for her walks, of course – I would never deny her her walks, it’s not her fault that I feel this way.  I sit on the sofa in the lounge, catch up on the news by reading The Metro online, and research float switches (on eBay) for the bilge pump on our boat.   I end up by getting myself stressed over the boat – imagining that the existing float switch had failed and that the boat was sinking – so, I get in the car and drive over to Wayford Bridge to check on it.  Everything is okay, the bilge pump has been operating as it should, the bilges are virtually dry, and I have been worrying for nothing.

I clear up my mess in the kitchen and vacuum downstairs before my wife gets home.  I’m not drinking any alcohol until we go on our holiday in October – I could do with losing a bit of weight, and abstaining from the demon drink seems as good a way as any to achieve this.  Of course, I will also be cutting out as much sugar from my diet as possible.

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.