2. Reasons to be Cheerful

“Parkinson’s?” boomed Mrs Jones. “That’s nothing. There are a couple of chaps down the Bowls Club with Parkinson’s.  They go on some lovely trips.”

Well, there’s a turn-up for the books.  How, when the consultant had levelly told us that yes, I had Parkinson’s and yes, it was an incurable degenerative brain disease, and yes, I could well end up in a wheel-chair, and yes, it would probably shorten my life-expectancy; how had he inexplicably failed to mention that, on the plus side, I could wear beige and go on lovely trips?

Such joyous prospects were as yet unknown when I had diagnosed myself by googling symptoms in a more-than-averagely worrying late night browsing session.  Always believe what you read on the Internet, my best beloved.  Especially stuff about Nigerian princesses.  At that point, I only knew of three people – apart from the usual celebs – who might have had Parkinson’s and none had stories that made me want to get up again the following morning.

One is a colleague’s elderly husband who has Parkinson’s and dementia.  One was the younger brother of an acquaintance who I’d heard had been diagnosed a while back and died a few years later.  And the other was my Great Uncle Stan.

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 through an air-raid and waking up to find himself covered in glass from a shattered window.  He had a glass eye which he used to take out at night and put in a jar besides his bed, which my Mum – a child at the time – used to find scary.  And equally scary was my memory of visiting him in a mental institution in the ‘70s, where he sat shaking uncontrollably in the corner, like an over-enthusiastic extra in One Flew over the Cuckoo’s Nest.  He has Parkinson’s, the nurses told us.

“Mind you,” says Dad, when I shared this memory with him.  “He was a heavy drinker.”

“He was not!” Mum counters, indignantly. “He only ever had cocoa!”

“At your place, perhaps. But you didn’t see him down the Rose and Crown.”

So my perception of PD at that stage was pretty grim.  But once I started sharing my fears and then diagnosis, I’ve realised there’s a whole world of people out there who have this condition and are just getting on with life.  PD, it turns out, is not the death sentence I’d imagined it to be.

DearHeart tells me about innumerable game old birds who passed through her speech therapy clinics, having lived with the condition for years.  She also reminds me that, because this is largely a condition of the elderly, many people have it in combination with other fun problems.  And with the accurate diagnosis of neurological conditions still being at a relatively early stage, it was not uncommon for Motor Neuron, say, to be diagnosed as Parkinson’s. All of these factors can colour your perception of the condition.

I hear from colleagues about neighbours who have had PD for 15, 20 years and are still working, travelling, enjoying life.  Challenged by a range of symptoms, yes.  But still out there.

LittleBruv tells me that one of the ministers at his wedding had PD and is still ministering, some 25 years later. LittleSis – a radiographer – tells me that she is treating a patient for cancer who has PD and you wouldn’t know it; underlining the encouraging news that having PD doesn’t give you a Get Out of Jail Free card with regards other horrible diseases.

And I’ve heard from many people; people who know what they are talking about, that a cure for Parkinson’s is a real possibility in the foreseeable future.  If the funding can support the research, that it.

Which is even more of an incentive to keep as fit as I can, for as long as I can, than the prospect of a trip to Margate.

One which note, I’m off for a run.

16 responses

  1. Brave words written in a beautiful way. I enjoyed your blog, though am not pleased that you have Parkinsons, of course. I’m going to follow you being positive.

  2. You are an engaging writer and had me from the start. I was diagnosed 3 years ago and thought it a death knell, an old man’s disease (I’m neither). I’ve since met many women with PD who’ve had it for 10 years or more and are still active. Unlike you, I was, initially, thrilled with the diagnosis, thinking it beat the horrible possibility that I had the same group of diseases that have plagued my mother. In fact, I said to my doctor, “I just need to decide if I’m Katherine Hepburn or Michael J. Fox”. Turns out Ms. Hepburn didn’t have PD…too bad, I might have picked her. She had spunk. I look forward to what you post next. Good luck to you!

    1. Thanks Lucy. Hearing positive stories like yours makes all the difference.

  3. Am loving your blog. Keep up the good work.

    1. Thanks, though I don’t think you’re supposed to reveal my secret identity! If you need me, just call on the jellyphone (see what I did there!)

      1. Right you are Jellywoman – or is it Jellybabe?

  4. Loved it Jellywoman! The thing that came across was the good writing, I laughed out loud at your opening line.

  5. […] of Parkinson’s at that point was extraordinarily limited – I have blogged on this before here so won’t bore you with the details.  Our good friend James died a few years ago from Motor […]

  6. Enjoyed reading this blog. Look forward to reading more. 🙂

    1. Thanks very much. I appreciate the comment. Regards.

  7. Suddenly i’m cheered – thanks, a fellow sufferer who enjoyed reading it again. You know I really DO think that we are on the verge of seeing a significant breakthrough in treatment of PD. Some very encouraging reports in the news recently. Let’s hope, pray, give thanks to men like MJF, who are doing so much and above all, remain cheerful. All the best to you.

    1. Thanks. Yes, I’m also optimistic, having met some brilliant researchers during the course of volunteering for some trials. Glad you liked the blog – it’s one of my favourites.

      1. Fantastic! Optimism is essential if we’re going to beat this thing. And I believe we will. Great blog – highly original slant. Bravo!

  8. sorrry – correction “people like MJF” – it’s not just men is it!

  9. […] unexpected turn of events. So for them, I started writing this blog back in October 2012. Many of the early blogs are about the diagnosis and its fall-out. After that – well, life […]

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