Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Back in the Saddle

I was planning on writing about how being in a proper routine – a going to work in an office sort of routine – helps me to do that crucial exercising malarkey. On a bicycle, no less. And I will. Continue reading



The diagnosis that dare not speak its name

Zippy, with apologies to the TV programme RainbowObviously, this doesn’t apply to me, because I’ve been telling nearly everybody, including you, dear reader, but it isn’t surprising that many people don’t want to talk about having Parkinson’s. According to a New York Times “Well” blog post:

Doctors and researchers say it’s not uncommon for people with Parkinson’s to conceal their diagnoses, often for years.
– Kate Yandell, “Keeping Parkinson’s Disease a Secret”

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Mervyn Peake Awards 2012 – the awards ceremony – some extra stuff

After all the excitement of yesterday’s event, and writing it up in the wee small hours as I did, I completely forgot to include:

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Mervyn Peake Awards: My Entries

I decided not to publish my poem or my painting on this blog until today, the 6th of July, because today is the day of the awards ceremony and the day that the winners get formally announced. Not that I actually won (although my poem got a special mention!).

This is a scheduled post, because I hope to be in London today, attending the awards ceremony and meeting some of my fellow creative Parkies.

Cannon Heath Down 5. Link to Other Blog!Up On The Downs

Climbing steep up the face of the down;
Finding a place with a view.
Flat enough for all the gear
I gladly lugged up here.

Wrestling with the playful wind –
Canvas wanting to set sail.
The easel set, the box displays
Its ware of tubes of paint.

Umber and ultramarine to make the clouds;
Pthalo and lemon the grass.
Rose madder assists and titanium white –
Unsung, it brings the light.

Mankind has shaped this landscape
With flint, and plough, and road.
Perched upon my hillside,
I see, I hear, record.

You cannot see the tractor; I choose not to show
The chopper flying low.
Red kite stoops – but my knife, too slow,
spreads contours of the land.

Chalk underfoot and sky up above
Nature plays its part.
What am I to interfere?
I watch, I paint, depart.


PVI Feedback: delayed due to overwhelming response

If anyone else was wondering what form the feedback from PVI takes (I was), I can reveal that… I don’t know. But I did get an e-mail from them saying that they’d had an overwhelming response and couldn’t send any feedback right now, and to note that:
as stated in the FAQ, we cannot provide clinically-relevant information to you, such as a diagnosis of Parkinson’s disease, because this is a research project not authorized to provide clinical information. However, we plan to give some informative data about your voice. Most likely, this will be the form of a set of numbers that ranks your voice quality among the general population, on a number of different numerical scales.

I hadn’t read the FAQ (Frequently Asked Questions), and I did want to know if their system could recognise any Parkinsonian features in my voice. Ah well. It’s still a good thing.

And I would urge you to call them, if you haven’t already done so. It must be one of the easiest ways to participate in a research project that I’ve heard of.

If you’re in the UK, call 01865 521168. If you’re elsewhere, take a peek at the PVI (Parkinson’s Voice Initiative) Web site to find your local number.