Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


A day on the North Downs

The weather has been a bit … damp hereabouts, recently. On Wednesday, it bucketed it down. I decided to stay in and paint a still life instead (see right). But the forecast for yesterday (Thursday) was for showers, so I decided to go for a long walk – with all the waterproof gear I had. Some of the showers were pretty heavy, but they were short, and – despite its best efforts – the wind didn’t quite manage to blow my hat off. It was a bit muddy, though.

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Someone Else’s Story

The EPDA (European Parkinson’s Disease Association) shared a link to this story on Facebook. I’m passing it on:

Living with Parkinson’s: Young father learning to cope with early onset diagnosis

It’s a local interest story from Spartanburg in upstate South Carolina, USA. One of the things they talk about is Early Onset (Young Onset) support groups (as distinct from general purpose Parkinson’s support groups, which tend to be dominated by the older PWP – whose perspectives, needs and interests are often quite different to that of the younger person). Now, I do know of one such group not far from me – I just haven’t managed to do anything about it yet. This has reminded me, and pushed the idea further up the to-do list.


Ropinirole Diary – April 2012

Current daily tablet ration. Round white tablet: rasgiline; Oval pink tablets: ropinirole 2 mg; Oval brown tablets: ropinirole 8 mg.

It’s probably about time that I made another entry in the ropinirole diary.

I have been taking 10 mg of the stuff for  fair while now, with no side effects. In general, I feel pretty good; the tremor is minimal (particularly when I’m not cold!), I’ve regained a lot of the dexterity in my left hand (I can tie my laces again), and the rigidity seems to have eased a fair bit, too. It’s obviously working. I can understand Sarah Nock‘s enthusiasm for the drug.

The principal aim, for me, in taking ropinirole, was to try to knock the dystonia in my left foot on the head, so to speak. It hasn’t quite worked yet, but I am very pleased to report that my toes don’t seem quite so determined to curl up. I can run a lot better than I could before I started taking ropinirole (but that is not to say that I am actually any good at it) – my toes aren’t curling up in preparation for impact any more. But they do still curl, and it’s still uncomfortable.

So… I’ve decided to up my dosage one more time. I’m taking an extra two milligrams, starting yesterday.

Toes crossed!


Parkinson’s Awareness Week

Today marks the start of Parkinson’s Awareness Week. I’m not sure how these things get allocated, or by whom (or why the US seem to have a whole month, for that matter), but there you are.

Parkinson’s UK, the largest UK charity for the condition in the UK, are leading the campaign. You can see what they have planned here.

As for me, I’m going to be trying to help raise funds (for Parkinson’s UK) via my sponsored walk*, and I sort of hope that this very blog contributes towards the increasing awareness of Parkinson’s.

*Go on… sponsor me to walk 20 km of Sussex downland. I promise I’ll take some photographs. They might even be pretty.

JustGiving - Sponsor me now!

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Mervyn Peake extension announced.

Just a quick note to say that the deadline for the Mervyn Peake Awards (celebrating the creativity of people with Parkinson’s), in association with Parkinson’s UK, has been extended to the ultra-lucky date of Friday 13th April 2012.

So there’s still time for you to get your creative head on and go for it…

See the dedicated page on Parkinson’s UK’s Web site for details.


The Spice Route: Turmeric and Parkinson’s

Could eating curry be an effective therapy for Parkinson’s?

There is, unfortunately, more to it than that (the answer to my question is “no”), but some recent research indicates that curcumin, a compound found in the spice turmeric (used in many Indian dishes), may reduce the formation of Lewy bodies in the brain. Lewy bodies are clumps of a protein called alpha-synuclein, and their formation is strongly associated with the symptoms of Parkinson’s. There’s a bit of background information on alpha-synuclein and Lewy bodies here.

The study that prompted my optimistic suggestion on diet claims, in its “capsule results”:

Curcumin binds to monomeric α-synuclein, prevents aggregation, and increases the reconfiguration rate, particularly at high temperatures.

Abstract: Basir Ahmad and Lisa J. Lapidus, “Curcumin Prevents Aggregation in α-Synuclein by Increasing Reconfiguration Rate”

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