Another six months

Friday 27 July 2018

This week marked nearly six months since my last visit to see The Professor, and it was tIme for my biannual check-up.

Although I didn’t have much to report, I was looking forward to seeing him again. Maybe I could spend a few minutes discussing his research and some of my own ideas about the underlying causes of Parkinson’s. And maybe I could get to know him a little better.

I sat patiently, catching up on work emails for the customary half hour or so delay.

“Hi there,” I said when he appeared. But he called for an elderly woman in the waiting room instead, and more or less ignored me.

Shortly afterwards a young doctor approached me and explained that he was one of The Professor’s clinical team and that he would be seeing me today.

I confess: I was disappointed. 

I had been downgraded. No longer an interesting case. Just another one of thousands of people in the UK on their inexorable journey of neurodegeneration. Nothing the doctor can do other than prescribe the same medication or tweak the dosage and tell his patient to come back again in six months.

To be honest, I would do the same: delegate the ordinary cases and focus on the unusual stuff.  

To his credit, Dr J realised he was second choice and made a real effort to be friendly and courteous, and to do his homework by carefully pre-reading my clinical notes.

He went through the motions of the various physical tests, and, as expected, quickly declared that there was no need to change my medication. Although I had deteriorated slightly since the last visit, I was still in relatively good shape; able to walk properly and, for the most part, use my hands reasonably well. We discussed my ongoing sleep and fatigue difficulties, but unfortunately they are par for the course. 

There was no news on my genetic test results, but Dr J was confident that they would be ready by my next appointment - in six months’ time.

But the visit wasn’t valueless. I was invited to take part in a new clinical study, one specifically focussed on identifying and analysing mitochondrial dysfunction as a more specific form of Parkinson’s (do they know something from my genetic testing that they can’t yet tell me I wonder?).  

As always, I was happy to help. I’ve booked myself in for the blood test, but will need to think a bit more before committing to the optional skin biopsy and lumbar puncture...  

As with the other studies in which I have participated, I won’t get to see any results. I don’t mind this but I do get a little frustrated at the overall pace of research. Medical science has achieved many wonderful things but can be frustratingly slow as hypotheses are tested and discarded, and as methodical trials and processes are followed.

I look forward to next seeing Dr J at the start of 2019. I am grateful that the slow progression of my disease means that I am still able to do most of the things I want to do. 

But I’m not holding my breath for a breakthrough.

Heatwave

Thursday 19 July 2018

Does Parkinson’s get worse when the weather is hot?

During the heatwave that the UK has experienced over the last month - the longest hot spell since 1976 according to a headline I saw - my local Parkinson’s WhatsApp group was abuzz with stories of aggravated movement symptoms. People complained of freezing and of cramps and general discomfort.

There was also the obligatory chatter about dietary supplements, from calcium to magnesium. Though with my own Scotch whisky fad, I am certainly in no position to be judgemental.

For myself, I have noticed a bit more tremor over the last couple of weeks. So perhaps hot weather does make it worse.

But the biggest issue is that I’m totally knackered. Sleeping has been a sweaty, restless affair, even with windows open, fan on and even an ice pack under the pillow.

For the first time I’ve started to experience another one of this strange condition’s myriad symptoms - daytime falling asleep.

Well actually, whilst at weekends I fall asleep like switching a light off when having my afternoon power nap, I have yet to fall asleep at my desk during the working week. But I’m getting perilously close. 

It normally happens after lunch. Not just a general feeling of tiredness but a rush of a powerful sleep potion that rises through my body to my head. A bit like the feeling of a general anaesthetic surging from the cannula, up the arm and into the brain. I frantically fidget and the feeling subsides for a minute or two, before I need to fight it off again. After perhaps half an hour, I start to perk up and just feel very tired. By early evening the sleep demon returns and I often crash out by 9pm.

In fact, I think I do microsleep at my desk occasionally - with eyes still open, I slip into la la land for just a couple of seconds - but surely it’s just a matter of time until I have a genuine snooze in front of my computer. That is certainly going to be an embarrassing episode when it finally happens.

As for the hot weather, mercifully it’s a little cooler today and I am able to function more normally.

But the forecast says the hot days are due to return next week. A long summer indeed for people with Parkinson’s...