2 years in – The Sun and The Rainfall

A long time since my last post so there is a lot to update on my Parkinson’s Disease experience.

(Original post started in November 2019)

It started with the Sun in Grenada in April , our trip to see where one half of our ancestry was from. When we booked the holiday, the story from my Mum often told of at family get togethers, was that the family history had links back to Jamaica and so the tale went. So checking in with my Mum as we were about to book she said the truth was that my great great great Grandfather had actually come from Grenada. So we switched our holiday booking accordingly from Jamaica to Grenada and there was some family history that my Mum would dig out for us before we went. Time past and Mum brought the research over on a visit the week before our departure and the anticipated adventure to an ancestors’ home island in the Caribbean.

Only problem was my dear Mum had got it all wrong and it was actually Barbados!

Anyway we had a lovely break away mostly spent lazily around the great Calabash hotel and our pool villa or the beach.

My half joke at the end of my last post about Dopamine Agonists (as in I would be needing them soon) was no longer any joke. I had just started a smallish dose of Ropinirole up to 8mg if I remember correctly. Unfortunately, on the day we were going up to Heathrow I had switched to a new prescription but had been given a different brand and had quite a violent reaction. I sweated profusely, felt weak and very nauseous, no way could I get on a plane like that. Luckily we had travelled up the night before so I had some time to recover which I did and it passed. But the same thing the next morning in taking the next dose. I then realised it was the dopamine agonists causing the problem and I had been given an instant release version, more for restless leg syndrome by mistake , not the slow release version I was supposed to have. Luckily, I managed to pull myself together in time for the plane, however, it served to underline to me the power of these particular type of drugs for Parkinson’s (more on DAs another time). [But for anybody just starting out on their Parkinson’s Disease journey watch out for this one!]. For the holiday , I had figured it out and made do with just my Sinemet and Rasagiline; it was still very early with my diagnosis and symptoms then. So grateful I am now to have had that holiday as I look back and reflect on where I was with Parkinson’s Disease.

The rest of 2019 is a bit of blur now (writing this retrospectively) , I slowly increased the dosage of my medication but the main thing that characterises that time was the problem with sleeping and lack of it. Even though I had taken up drawing and painting which gave me a good sense of purpose and enjoyment , and which I would do late at night until tired enough to attempt to sleep. Sleep though was, and still is, a significant problem. Looking back on that period now , it couldn’t have been as bad as I have since felt. After all I was still working and travelling to and from London. I couldn’t imagine doing so much, if at all now, albeit perhaps because of the Pandemic and lockdown, but finishing writing this in 2022, my issues are much more impactful.

On this point it is very hard to measure the progression of the disease in your own mind , let alone define and set down clear steps for external measures or timings for when I noticed changes in the impact of Parkinson’s Disease. However, this would be useful for anyone with the disease to know and of course was part of the reason for writing and sharing my story in the first place. At the start of my journey , my neurologist’s guidance was “you’ll be fine for the first decade, the second will be more challenging, and we’ll worry about the third when we get there”. This is probably still holding true as a very generic outlook , although halfway through the first decade it is a lot harder than I imagined and of course it is progressing and therefore getting more challenging already,

The rest of 2019 I will remember as the year we took our son to see his first hero’s of music KISS! He was dressed as Starchild of course, and we had a great time. Although we needed to have practiced the make up really; being novices in this field. It dried and cracked easily and I have since found out that there are whole tutorials on YouTube from Gene Simmons himself; what you can find through technology never ceases to amaze!

I am very grateful to all those people who take the time to share their knowledge in this way, the very many artists for example, have helped me tap into a creative side of my brain I never new existed with my painting. Perhaps it didn’t until this PD thing came along and started altering my brain chemistry. One of the upsides to having this disease!

And so to the Rainfall, the drip drip away of Dopamine. The drain away was slow but determined & I gradually needed more medication through 2019 until reaching a level with 4 different drugs somewhere near the end of the year. Sinemet 3 to 4 times a day, Rasagiline 1 per day, Ropinirole 16mg per day and Encapatone to boost the Sinemet. I believe that puts it at two thirds of the maximum for Ropinirole and about half the maximum of Sinemet. So perhaps it was early days in medication terms and a smallish dose of Sinemet. The big question was how long would I be able to function with this level of medication and what was my Parkinson’s going to be like to live with in the future,

As I post this , the big question is still very much the same question but this is the story I will try and bring the blog up to date with.

The saga will continue……