The wrong number?

I am a dodgy old crock and have been living with someone with PD for a couple of decades. Now I can diagnose it in complete strangers at just a glance. Maybe even accurately. TV personalities years before they come out as suffering, musicians with more apparant stage fright than usual, new neighbours, fellas stumbling on their daily walks: I am attuned to PD like a baby calf is attuned to the udder. I admit that when I go out, i go where other old stagers are. The chances of the people who pass me in the park suffering from PD are probably higher than average. But I have a theory to posit: there are more people with Parkinson’s than anybody cares to admit.

145,000 sufferers in the UK at the last count? It cannot be correct. On a 15-minute struggle round a lake thus week, I counted FOUR individuals showing clear symptoms. Neither of whom was my partner. When I got home and was cleaning the windows after a suitable rest, two people passed the house who appeared to be enduring this curse. My cousin is newly diagnosed. My friend’s mum. Another friend’s dad fought it to exhaustion. There have been three people diagnosed in our short cul-de-sac who don’t live in our house. I reckon the figure is far higher than the oft-quoted 145K, but because PD people tend to reticence or simply can’t work up the lifeforce to complete surveys or shout about their health, the illness goes under the radar. Any thoughts, dear forumites?

I tend to do this as well. But along with PD I have peripheral neuropathy and now arthritis is taking hold and my spine is slipping over into scolliossis (sorry, not even sure yet how to spell that one) and some of the people I happily diagnose are 20 years older than me ( I am nearly 77) and when I see these strangers in the street some are just simply older, cold and tired. And yes, I think there are some who never get diagnosed.

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Hello tiredcaregiver, another tired care giver here. I too after 12 + years (plus pre diagnosis of my husband) become attuned to signs of Parkinson’s in strangers out and about. I was quite surprised to read the statistic of 145,000 diagnosed in U.K. and would have suspected that number to be higher.
The bit that worries me the most is the ever vigilant self scanning in the fear I’m developing PD myself and then would I become one of those reticent to seek medical input - probably so !

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Wow, you hit a rich seam of paranoia there, Plus1. I’ve spent years assuming I am getting the curse of PD too. Current worry is my fingers on one hand trying to stick together. Never mind that I am stressed out as we are trying to sell our house at present and therefore spending more time than usual wiping, cleaning, scrubbing and generally trying to make the place appear “presentable” if not “normal”. Hence my hand would be likely to be under unusual strain… I tell myself. And I have spent so long as a partner to PD, it feels almost like it is just the inevitable next stage in life.

As for doubting whether medical help would be anything more than a last resort, I have been there. Having seen my partner’s pre-Parkinsonism peritonitis misdiagnosed as IBS, having been told I had a 3cm lump in my throat which turned out not to exist, and having seen my partner undergo DBS which then did not work when turned on and doesn’t do much today despite numerous adjustments, I too have severe doubts that I would seek medical intervention if diagnosed with PD. But if not that, what?

Parkinson’s and peritonitis: reckon there is a connection, as some researchers have assumed.

Anyway, Plus1, at least you can get in to any event with a name like that…

You are right to bet there are many who never get diagnosed, Mosie. It just gets marked down as a sign of getting old, or the sufferers have so many other problems that PD is the least of 'em. In which case, I feel very sorry for them.