When muscles go AWOL

Regular readers will know that this column centres its attention upon my daughter, The Girl, who is sixteen and has Down Syndrome. Hers is a rollicking good story and we have followed her tale through primary school to Cardiff High school. She is currently in Year 11 and, if everything else goes to plan will enter Whitchurch High this coming autumn for two years in sixth form. Among other things these musings have considered issues surrounding her ‘special needs’, looked at her wide range of activities and achievements and, all in all, concluded that a life with Down Syndrome is very much a life worth living. But it’s been a while since I’ve had something to report to readers about my developing Parkinson’s Disease.

Back in 2016, after about a year of watching my left hand develop a life of its own – shaking and dropping things at random, challenging me to get food and wine successfully into my mouth before it tumbled from my fork – I decided to visit my GP. The Boss and I spent a lot of time online first, analysing what might be my affliction. We decided that it sounded either like an intention tremor, multiple sclerosis, or Parkinson’s disease (PD). We learned that it can be tricky to diagnose PD.

The NHS website puts it thus: “No tests can conclusively show that you have Parkinson’s disease. Your doctor will base a diagnosis on your symptoms, medical history and a detailed physical examination. Your GP will talk to you about the problems you’re experiencing and may ask you to perform some simple mental or physical tasks, such as moving or walking around, to help with the diagnosis. In the early stages, your GP may find it difficult to say whether you definitely have the condition because symptoms are usually mild. If your GP suspects Parkinson’s disease, you’ll be referred to a specialist” (usually a neurologist or a geriatrician). me that a diagnosis of PD would be likely if I had two of the following three symptoms:

• shaking or tremor in a part of your body that usually only occurs at rest

• slowness of movement (bradykinesia)

• muscle stiffness (rigidity).

And, If the symptoms improve after taking a medication called levodopa, it’s more likely that one has PD.

Long story short. I was diagnosed with PD. I had to inform the DVLA and be given the green light to drive by my GP. But for the first couple of years post-diagnosis, to tell the truth, I did not worsen much at all. I didn’t think that I was poorly enough to apply for PIP or its then equivalent. I twice fell into the river by the bowls club (don’t ask) and had a nasty fall running up the granite steps to our then home. Yes, I could still run! But gradually my stamina went and nearly all my trips were by car rather than foot. Things became tricky when I developed hyperthyroidism too. The doctor had to work jolly hard to differentiate between the symptoms of PD versus those of the thyroid condition. Walking on any than flat surfaces proved treacherous; my brain telling me to go left but my body insistent on going forward, with falls ensuing. Following a close call on the cliff path near Caerfai in St David’s I decided to

by Wyn Evans

rule out footpaths from my itinerary. A further couple of years passed. On the plus side, I could still manage the big weekly shop at Sainsbury’s but I proved unable to get off the beaten track with my cameras any longer.

I worried that The Girl would lose opportunities for holidays because of my condition. However, this was one area that the Covid lockdown did us a favour; no one could get abroad to their dream holidays. This meant The Girl was in the same position as everyone else. But with the end of lockdown came a downturn in my PD. It was probably a coincidence that these happened in tandem but between March and April this year I went from moderately unwell to prodigiously unwell, as follows: unable to get out of the armchair; unable to walk upstairs – having to crawl up; sleeping 20 hours a day; light-headed; tumbling and falling to the fl oor, breaking no bones but hurting myself. And if one thing differentiates the Pre-PD from the Post-PD me it is my musculature. The Boss says my legs have disappeared. Whilst that is a stark assessment it is given the lie by virtue of the fact that they are here now, bearing my weight! But my biceps (which in College won me arm-wrestling competitions!) have, over the last three months, disappeared. That’s right, my biceps have left the building. Alongside that there is the inconvenient (pun intended) necessity to plan any journey or route around the proximity of public toilets, and the annoying requirement always to be no further than a yard away from a box of Kleenex.

More positively, the GP and Specialist are working in tandem, reviewing everything about my condition and trying different assimilations of drugs. I think that they are on the right track as I am regaining energy and activity daily. I lost three stone between February and April and I am now looking forward to getting it back.

My diagnosis of PD has not proven to be a death sentence (something I feared) and I am doing all I can to live a long and happy life. Good luck and respect to any of you who are, or whose family are battling Parkinson’s. As Billy Connolly wrote(1): “I’ve got Parkinson’s Disease, and I wish he’d ******* kept it to himself... The Parkinson’s just rumbles along, doing its thing. It bothered me for a while but when I think about it, I suppose I’m lucky I didn’t get something worse”.

Next month, more from The Girl.