Month: October 2018

We are going away on holiday for a couple of weeks, so there’s one or two things that really need attending to before we disappear.   We abandoned our boat two weeks ago when I bashed my head and had to go to the minor injuries unit at the Norfolk and Norwich Hospital, so this morning we head off to Wayford Bridge and clean up the mess that we left.

We drop into Lidl in North Walsham for a few bits and pieces on our way back to Southrepps, where I “test load” my car with our suitcases and hand luggage – it’s always a bit of a struggle, and it’s easier to make adjustments while the bags are empty.

We drive over to Hevingham to see (and say goodbye to) my wife’s sons, their partners and our grandchildren, and then it’s back to base to do some serious packing!

I’m taking a break from daily blogging whilst we are away, so I’ll be back in a couple of weeks.  Thanks for reading!

I spend the morning posting links to my latest vlog on social media, and then make the rash decision to wash my car (it’s looking fairly grubby).  I intended to wash and polish the outside, and clean the windows, seats, dashboard, and vacuum the inside, but by the time I’ve washed it, I’m flagging.  By the time I’ve finished polishing it, I’m practically on my knees.  It seems ridiculous that I should be so exhausted from such little effort, but these days washing the car is my pre-Parkinson’s equivalent of running a marathon (not that I ever ran a marathon, but you know what I mean).  I collapse onto the sofa to recover, and the dog wants me to take her for a walk, but there’s no chance of that at the moment.   My wife arrives home from work and decides to take the dog out and grab some spinach from the allotment at the same time, so that solves that little problem.

I’m feeling guilty because I haven’t done any housework, so (while my wife is walking the dog) I quickly clear away the mess I’ve made with car cleaning gear, and then run the vacuum cleaner around downstairs.

I spend the morning writing a script for a vlog that I’m preparing for publication whilst my wife and I are away on holiday.   I film myself (with a large number of retakes, mainly due to dissatisfaction with my voice), and then transfer the raw footage to my MacBook and get cracking with editing it.  I finish work on the video well ahead of schedule (surprisingly), and upload it to my YouTube channel before taking a drive out to North Walsham to buy some eggs and milk from Lidl.

I have had some noticeable progression this week – my back has been more rigid and much more painful.  I have taken cannabis for pain relief on three occasions, in addition to my bedtime dose.  I’ve heard that some DBS patients manage to achieve improvements in muscular rigidity, so I’ll have to ask my DBS programmer about it when I next go for a tune-up.

Motivation has returned (just a little bit) today.  I’m still not feeling great, but I do manage to achieve a few things.

I print off the itinerary for our holiday, then enter all of the information that the airline requires in advance of our flights.  I check to see whether the Special Assistance (that I requested through our travel company a couple of months so) has been registered with the airline and/or the airport – it hasn’t, so I ensure that my wife and I are “on the list”, because it makes such a difference to me.  I check our reservation for a hire car, and discover that I can save almost £50 by changing to a vehicle very similar to the one that I’ve booked, so I email the hire company and get them to make the necessary changes to our booking.  I print out the various pieces of paper that relate to car parking at the airport, the hotel that we are staying in (near the airport before we fly out), the transfers, accommodation and car hire (once we reach our destination).  I check currency exchange rates, and order our currency for collection at the airport.

The afternoon dog walk includes a visit to the allotment, and I harvest some spinach and quite a lot of runner beans.  When I get back home, I vacuum downstairs, tidy the kitchen, put the recycling bin out (for collection tomorrow) and then finish off uploading tomorrow’s vlog to my YouTube channel and preparing it for publication.

My motivation is down the toilet again.  I really want to get this week’s vlog scripted, filmed, edited and uploaded to my YouTube channel, but I’m really struggling.  A script that would normally take me a maximum of two hours took me almost 5 hours, and I don’t feel that I made a great job of it, either.  Filming is also a slow process because I’m unhappy with my voice, which is high-pitched, slurred and indistinct.  I try changing my neurostimulator over to group “B” settings to see if that is any better, but I can’t say that I notice any difference.  I finish the editing around 7.30pm, which isn’t too bad (all things considered), but I keep spotting silly mistakes that I made because I wasn’t concentrating, so by the time I’ve corrected the editing errors and recreated the video it’s after 9pm (and my wife is still at work).  I will upload it to YouTube tomorrow.

After several days of feeling more motivated than I have done for quite some time, I’m back to not really wanting to do anything – or rather, wanting to do stuff, but not being able to motivate myself into action.

I wanted to script and film this week’s vlog today, so that I only have one more video to make (for publication while we are away on holiday), but I barely make a start on researching my chosen topic (fasting and Parkinson’s Disease), so I’ll have to try to accomplish this tomorrow now.

I get the suitcases and hand luggage bags out of the loft, ready to start packing, and start adding to my list of things that we need to take with us.  I need to print out a load of documentation, but I don’t get around to it.  I also want to ring the holiday company to ensure that they have booked Special Assistance for me at the airport (both ways), but I don’t get around to that, either.  I can see that Friday is going to be a day of blind panic as realisation dawns that time is running out…

My hard-working wife is working hard again today.  I’m not feeling very energetic, so spend much of the day researching things for us to do while were are away on holiday, calculating how much currency we will need to take with us, checking currency exchange rates (and reserving currency for us to collect at the airport), and looking for a pair of size 13 swimming shoes and snorkeling fins.

I do the usual dog walking, and visit the allotment to harvest some spinach and kale, but that’s the extent of my physical activity today.

My wife is at work today, trying to clear the decks before taking a well-deserved break, so I spend the day editing (again) the vlog that I filmed during the last week, and which I intend to publish whilst we are on holiday.  It’s a lot more complicated than my usual weekly vlogs because it’s not just me, talking to camera from a script – I have multiple contributors, all of whom are completely unscripted, which makes the editing process much slower.

My wife returns home at around 8pm, and I have just finished creating the video to upload to my YouTube channel.

It’s the anniversary of the first time that my wife and I met (8 years ago), so we treat ourselves to a bottle of red wine with our dinner tonight.

I film two vlogs this morning, and edit the one that I am publishing later today.  I finish this week’s vlog, upload it to my YouTube channel and publish it.  Then I post links to it on social media and a number of Parkinson’s Disease forums.   I’m well ahead of the game this week, so I can make a start on editing one of the vlogs that I’m preparing for when my wife and I go away on holiday later this month.

We are invited to dinner at my wife’s eldest son’s house this evening, to celebrate the birthday of a mutual friend, so I drive over to Hevingham after walking the dog this afternoon, and meet up with the gang.   A pleasantly chaotic evening ensues, with great food (a Thai curry), a most impressive gluten-free birthday cake (made by my wife’s youngest son), and brilliant company.

I was expecting to film a couple more people for one of my vlogs today, but they both appear to have vanished from the face of the earth, so I spend my day writing scripts – one for this week’s vlog, and one for the vlog that I intend to publish while we are away on holiday later on in the month.

Aside from script writing, I pop down to the allotment to harvest some spinach and runner beans, walk the dog (twice) and vacuum downstairs.

My wife is working late (again) so I take the opportunity to film this week’s vlog, and also the vlog that I’m preparing in advance.   Tomorrow will be a fun filled day of editing!

That’s all, folks!

I’m filming more people for one of the vlogs that I’m preparing in advance of our holiday later this month, so this morning (after walking the dog) I drop in on my neighbours to confirm that they are still prepared to be interviewed (they are!).

I spend some time working on the script for the vlog, and then get the filming gear together and take it over to my neighbours house, where I set it up in their front room.  I conduct three interviews, and then sit down for a cup of tea, a couple of Jaffa Cakes and a chin wag with my neighbours.

When I take the dog for her afternoon walk I bump into a couple of other locals, and manage to persuade them to be interviewed for my vlog as well, so it looks like I’ll be doing some more filming tomorrow.

I have a pretty good day today.  I’m feeling a bit more motivated than is usual, so this morning I clear up all of the dead leaves from our doorstep and little front garden, and then I vacuum the entire house.  It takes it out of me, but I’m feeling really pleased that I have been able to do something useful.

Late this afternoon I gather together my filming paraphernalia (camera, light and tripod) and drive over to Hevingham where I interview my wife’s ex-husband, her two sons and her youngest son’s wife for a vlog that I am making, to be published whilst we are away on holiday.  I get a lot of usable footage, and my mind is working overtime on how it will all hang together when I edit it.

I have an appointment with my neurologist this morning so, armed with evidence of the efficacy of medicinal cannabis (for me) I drive to the Norfolk and Norwich Hospital to ask him two things: (1) to prescribe me exenatide, a type 2 diabetes drug that has been shown to arrest the progression of Parkinson’s Disease in a recent clinical trial.  My doctor was unable to prescribe it to me because the prescription service said that there was “insufficient evidence of benefit”, but he assured me that my neurologist would be able to do so; and (2) to apply to the Home Office’s “Expert Panel” for medicinal cannabis on prescription.

I failed (miserably) on both counts.  My neurologist told me that he would have to apply to the Medical and Drugs Board for permission to prescribe exenatide, that he was a member of that board (and, therefore, well versed in the way that these things work) and that, in his heart of hearts, he knew that the request would be rejected.  When I mentioned applying for medicinal cannabis, he could barely keep the grimace from his face, and then said “cannabis is not indicated for Parkinson’s”.   I explained that I found it extremely beneficial, and that I had evidence of that benefit.  I also told him that my Member of Parliament (Norman Lamb) was aware of my intention to ask for medicinal cannabis, and fully supported me.  In the end, he said that he wouldn’t apply for it at the same time as applying for exenatide because he didn’t want to “overwhelm” the board.   They must be extremely easily overwhelmed, that’s all I can say!  I did get a commitment from him that he would be prepared to apply for medicinal cannabis after the application for exenatide has been considered, which is better than an outright refusal, I suppose, but I leave the hospital with a heavy heart.

We are expecting my wife’s two sons, their partners and our two grandchildren to descend on the boatyard at Wayford Bridge this morning for a leisurely trip down the River Ant, so we are up, breakfasted, car loaded with food, boating paraphernalia and dog, and ready to leave the house by 10am – quite impressive for a Sunday!

Once everybody is on board, we motor down the River Ant, across Barton Broad to How Hill, where we moor up, and my wife prepares bacon butties, cheesy chips and drinks for everyone.  Ice creams are procured from the local shop for dessert, and everybody’s happy.

Getting ready for the return trip, I manage to lose my balance, fall backwards and bash the back of my head on a metal bracket attached to the boat windscreen.  It hurts (a bit) and I have drawn blood, but it doesn’t seem too serious so my wife holds a cold, wet handful of tissues over the back of my head while I steer the boat back up the river to Wayford Bridge.  As we are getting everybody (and everything) off the boat and onto dry land, I put my hand to the back of my head and can feel that I have a gash in my scalp, so my wife and I head over to the minor injuries at the Norfolk and Norwich Hospital to get it checked out.  Luckily the injury is fairly superficial, and a very nice chap cleans the wound and glues my scalp back together again.  Not quite the ending to the day that we had planned, but all’s well that ends well.

We are taking the family out on the boat tomorrow, so today my wife and I are making preparations.  We go to Wayford Bridge (where our boat is moored) to check that the engine will start (it did), make sure that the bilge pump is working properly (it is) and to give the whole boat a bit of a clean.

We then head over to Spixworth to say happy birthday to my sister-in-law, give her her card and present, and to film her for one of my vlogs.  The filming goes well, and I’m pleased with what my sister-in-law says in response to my questions.   One down and about half a dozen or so to go!

We head back to Southrepps just as darkness is falling – the nights are really drawing in now, which is a reminder that summer is well and truly over.  Fingers crossed that the weather stays fine for our family trip down the river tomorrow!