I was at a family celebration recently and the Biblical story of Doubting Thomas came up in conversation. Recap: Thomas was the disciple who had to have his Master’s resurrection proved to him by a (possibly) exasperated Jesus and a bloody side wound. I was brought up as one of the legion ‘blessed’ folk who believed this ie those who had faith.

As I mulled this familiar story over later, I saw some parallels with the advocacy roles so many of my co-Parkinson’s sufferers adopt .

A non patrkinsons person whether a carer, practitioner or governmental decision maker ideally should be able to understand that the symptoms and discomforts reported (ok, moaned, shouted and /or sobbed) are real. To the patient. Whether they are symptomatic of infrastructural decline, financial restrictions, missed research developments or seeded and grown by worry, pain and sleepless nights, they must believe they are real and threatening to a person facing a life sentence of incurable chronic illness. To act with purpose they need that passion. Sometimes that level of faith must be almost impossible. Especially since it has to be balanced with a healthy realism. Pity doesn’t cut the mustard when you want real change.

I know Parkinson’s and my other neurological problems can deal me an unhappy hand of infuriatingly cyclical symptoms that I then either downplay in the hope they will disappear, forget (ok, banish) them from my mind so as not to spoil the day or get theatrically mired in a La Boheme-like tragedy of my own making involving me dying piteously early to the tune of my sobbing children.

Obviously I am not claiming celestial status here…it’s just that it has struck me how my perspective has changed. I think Thomas would be slightly cheesed off with his write up in history. I find myself shouting his corner a bit. After all, he never betrayed Jesus like Judas. He never denied him like Peter. All he did was ask a question. He was I like to think, the scientist of the gang.

So I will be spending this April, as 2024’s Parkinson’s Awareness and National Poetry Writing (#napowrimo) months, feeding those questioning souls. I will try to show you what having #yopd is really like. Hopefully I won’t have to let you put your hand into an open wound but perhaps you will understand some of the finer sore points this tricksy condition can bring.

And maybe that will help in the hard slog of finding a cure and improving the lives of current patients. I can but try. Please subscribe to get my posts delivered straight to you. Thanks.