129. Daisy, Daisy, put some wellie into it…

I’ve told you before about my Great Uncle Stan. Mind, it was two years ago, and you’ve had a lot on, so let me jog your memory.

Great Uncle Stan kept a fruit and veg barrow on the Northcote Road.  During the war, he spent a lot of time at my Nan’s; once managing to sleep right through an air-raid and waking up to find himself covered in glass from the shattered window beside him.  He had a glass eye which he used to take out at night and put in a jar besides his bed, terrifying my Ma – a child at the time.

Equally terrifying is my memory of him, sitting in the corner of a mental institution in the 1970s. He shook uncontrollably; had no idea who we were;  couldn’t communicate. He has Parkinson’s, the nurses told us.

I know now that the diagnosis of PD was a bit hit and miss in those days.  Also that Uncle Stan liked a pint or two.  Nevertheless, that visit fixed for me the image of how Parkinson’s looked.  This was the mental picture I took into my neurology consultation the day I was diagnosed.  Not good.

Subsequently, I have met and heard about people with Parkinson’s who are a world away from Uncle Stan. The lovely BTMan was one, the neighbour of a friend who came to see me shortly after my diagnosis. He was fifteen years into his condition when I met him: holding down a job, travelling, loving life.  He showed me that life after diagnosis was possible.

I  presume that those newly diagnosed with any disease have to contend with visions of their condition at its very worst. This summer, people new to PD have, added to their worries, had media reports suggesting that Robin Williams’s death was linked to his PD diagnosis. This must have made a difficult time, extra tricky.

So all hail to The Guardian for bucking the trend this week and publishing an article about Parkinson’s which is both positive and helpful. Written by Eleanor Tucker, it explains that younger people get Parkinson’s too but that generally, once the shock has passed, they just get on with leading a life well worth living. The article is topped by a picture of a smiling Jeremy Wares, who, we are told, was diagnosed at 36. A tough thing to get through, but the caption quotes him as saying, ‘life is good’.

Thank you, Jeremy, and to the others featured in Eleanor’s piece. Every hour someone in this country is diagnosed with PD, we’re told: it’s a grim time which can be transformed by encountering someone who has come through it and can still say that life is good.

***

Another bit of Parkie news that popped up this week was the publication of a study into the significant benefits of Forced Exercise, a tautology if ever I’ve heard one. Apparently, if you’re on a tandem with someone who cycles faster than you, so that you have to pedal more energetically than normal, it’s really good for the dopamine levels. Having always thought of a tandem as a machine which allows someone else to do the work while you do the knitting, it might take a while to integrate this finding into my life.

***

I’ve added a new widgetty thing to the sidebar on the right of this blog, allowing a search by categories. So, if you’re particularly interested in pieces about Parkinson’s, you can find them more easily without having to wade through teaching anecdotes. The earlier pieces in particular cover my diagnosis, finding the right medication and my involvement in a drugs trial.

***

A cure is coming closer all the time. Only this week, the Cure Parkinson’s Trust was inviting researchers to apply for help in funding their studies. Yet we know there is even more excellent work that could take place if money were available to fund it. Fortunately, my purchase of a replacement washing line has brought the quest for a cure a stonking 15p closer, thanks to GiveAsYouLive, at no cost to me.  Sign up here by clicking on the link.

 

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3 responses

  1. Thanks. Just what I needed to read tonight.

    1. Are you having a bad night? Hope not. I’ve added a link to your blog on the right of mine – hope that’s OK.

      1. Thanks and yes I noticed and did the same with your blog. Was feeling a bit sorry for myself that’s all … am over it again!

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