“A sort of ‘coming out’ story” by Wyn Evans


It is Saturday 30th April 2016. Around midday, I was in the checkout aisle of Sainsbury’s Colchester Avenue superstore. I have been a regular there for twenty-three years and know many of the staff well-enough to pass the time of day with. Before today, I had given little thought to the fact that shop staff must also necessarily recognise customers and their (our) little habits. Then one of the members of staff made me cry. I know what y’all are thinking: someone caught me half-inching a grape under the guise of “just testing if they are fresh!”; or someone else had caught me downing a bottle of Lucozade to sustain myself through the soul-destroying aisles of cake-mix, lasagne sauce, and toilet paper.

I admit that I am a serial offender in both these cases – but I always pay for the bunches of grapes and pass the empty bottle of carbonated health drink through the till. But it was something about my behaviour that occasioned the check-out lady [CoL] to smile and say to me: excuse me sir, but are you OK?

Me, somewhat taken aback: Why do you ask?

CoL: The last few times you’ve been in here you haven’t been yourself…

Me: What do you mean?

CoL: … Usually, you are very focused; you go round the aisles as if you know exactly what you want and where it is. And you usually unload your trolley quickly and pack your bags efficiently. I said to my colleague the last time you were here: ‘look at that man, doesn’t something look different to usual – he’s slow and hesitant?’

At which point I cried and Check-out Lady and I introduced ourselves. It’s an interesting story, so I thought I’d tell you all what I told Elaine [the CoL]. This little column has tried to tell our family’s story, usually in an amusing way. But we’ve touched also upon serious topics like Auschwitz, the Holocaust, and the future of Down Syndrome (DS). As part of this story we’ve touched upon The Girl’s DS, The Boss’s Multiple Sclerosis, and my depression. I’d like this column to return in future to its usual tone and content and to do that I need to come out, as it were. I have a neurological condition that may be Parkinson’s Disease (PD).

My GP told me this eight days ago. He added that a diagnosis of PD would account for most of my symptoms: the tremors encompassing, first, my index fingers, then my hands, until it now affects arms, legs, chin, whole body; the drooling; the poor balance; the abrupt and continuing change to my voice; the increasing (or should that be ‘decreasing’?!) slowness of movement; changes to my writing, and muscle rigidity. However, he said that some of my symptoms were not consistent with PD, particularly the chronic pain in my arms and legs. Previously he’d thought that these pains might be referred pain from arthritis in my neck. He continued that it might alternatively be a condition that used to be called ‘Benign Essential Tremor’ but was renamed ‘Essential Tremor’ because there was nothing benign about its effects.

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Thus, my GP has referred me to a consultant Neurologist. We discussed waiting times; they measured in months. Given the speed with which the symptoms have come on The Boss and I and the GP all agreed that it would be best to go private and see the same Neurologist on May 14th at the Spire hospital. I mentioned the speed of onset. While not being anything like a touch-typist, I am a good and accurate typist. I would guess that I would normally make about twenty major typos in fifteen-hundred words. These I would return to during proof-reading and correct. This was certainly the case a month ago when I wrote the May Cardiff Times article. Let me now show you what it is like today, uncorrected: “Thus my GP has referrd me to a consultanat Neurologiste. We discaused waiting times; they measured in mothens. Given the speed with which the symptopms ha dve come on…“, and so on. (Though who wouldn’t want to be a ‘Neurologiste’, complete with a French accent and penthouse suite overlooking the Seine?) .

…It is now Saturday 14th May. The Spire hospital is calm and peaceful but the Neurologist confirms that I do have Parkinson’s Disease and any calmness felt by The Boss and me is shattered. Although there is no test  that can confirm PD the Neurologist is sending me for a brain scan to rule out other stuff. He’s also given me a note to take to my GP so as to start drug therapy immediately, and he will see me again in 6 months. The direct cause of PD is a loss of nerve cells in the basal ganglion area of the brain, which cells are responsible for voluntary movements. These cells stop producing the chemical dopamine which disrupts the transmission of messages between the brain/spinal cord and the rest of the body. The condition worsens over time.

So the drugs therapy aims to add-back dopamine to the body’s systems. Finding the right level of drug is very much ‘stick your finger in the air and see which way the wind is blowing’. There are likely to be many changes to the volume and type of drug. The drugs themselves have side-effects like nausea, nightmares, hallucinations, tiredness and dizziness. (So no change there then! Joke.) Apparently I can look forward to a normal lifespan and it seems that relatively few people with PD go on to get Dementia. This is a good thing as my long-term nightmares have always been that I might become physically immobile and/or mentally incapable. Last Wednesday I happened to tune into Radio 4’s ‘You and Yours’ just as Winifred Robinson was interviewing a chap with PD who said: “it [PD] is all-consuming, a nasty-nasty disease that takes over your whole life”. Needless to write, those words have haunted me all week. The Neurologist today said nothing to suggest they were incorrect but did imply that with proper management it all might be like a walk in the park. (I’m not joking – Nikki and I looked at each other as we left his office and sardonically said to each other “that’s all right then”.

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Before submitting this column, I asked The Boss whether I ought to discuss PD on what is essentially The Girl’s blog. I also asked the Cardiff Times’ Publisher whether she’d like me to rewrite it in favour of a lighter piece. I hope that no-one reading this has been put-off returning again to hear about The Girl’s future adventures next month and in the months after… It’s just that we’ve tried always to tell Angharad’s story for better and worse. Being her dad, my PD will impact on her life, as does Nik’s MS. So there will be times when PD makes its appearance here again, maybe a few. I hope you will bear with us as we try to map out this unexpected turning on our journey.