Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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“This Is My Mama” – video

EPDA (European Parkinson’s Disease Association) shared this on their Facebook page. I thought it was very touching.

“Naomi was just a kid when her mom was diagnosed with early onset Parkinson’s disease. This is her story.

This film has been entered into the 2012 Neuro Film Festival from the American Academy of Neurology Foundation at http://www.neurofilmfestival.com

Let’s put our brains together to support brain research.”

I find it particularly interesting to get the child’s point of view, even though Naomi’s tale doesn’t echo the experiences of my own children very closely. My children were younger than she was, and I was diagnosed in less time than her mother was. I do know that I do sometimes get angry with them, but I’m really not sure how much of that is down to the Parkinson’s.


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“Mediterranean” Style Diet helps fend off Parkinson’s?

The British press seem to be all over this one. I can find The Mail, The Mirror and The Huffington Post, not to mention diet.co.uk and AOL Lifestyle UK. All of them witter on about the “Mediterranean” style diet – rich in fruit, vegetables and fish – that is the healthiest, and which seemed to have a level of protection against Parkinson’s. That’s all fine and dandy, but the research was done in Japan, and the abstract does not mention the Mediterranean at all. The healthier, allegedly protective, diet that the Japanese researchers tested against the Western menu and an intermediate style of eating was actually the traditional Japanese diet.

Maybe it does resemble the Mediterranean diet. But why call a spade a pickaxe? Continue reading


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Acupuncture as a treatment for Fatigue

Not an acupuncture needle.

Personally, I seem to be escaping fatigue at the moment, but it’s a very common symptom in Parkinson’s. The Michael J. Fox Foundation is sponsoring a study on how acupuncture might help Parkinson’s patients who suffer from fatigue.

To test the effects of acupuncture on fatigue in Parkinson’s disease we will randomly assign Parkinson’s disease patients to either receive real or placebo acupuncture twice a week for six weeks. We will measure patients’ fatigue and other measures of quality of life and disease status prior to starting acupuncture, half-way through treatment, at the completion of treatment and six weeks following their last treatment. We are interested to examine whether patients receiving either real or placebo acupuncture had improvements in their fatigue and whether there are differences between these two groups. We are also interested to see if acupuncture has any benefits on quality of life or other Parkinson’s symptoms.

[from the Grant Abstract for “Acupuncture as a Symptomatic Treatment for Fatigue in Parkinson’s Disease”]

I hope it does prove to be useful, although I can’t help but wonder how you can have placebo acupuncture. Surely a needle is a needle?

(My best guess as to how placebo acupuncture works is that they still stick needles in, just not in the approved points. I’m not entirely convinced, because – well, maybe the “wrong” point is just an undiscovered “right” point. Assuming, of course, that acupuncture works how they say it does. And I’m trying to be open-minded on that one.)


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“Time Bomb” Faces NHS

The UK’s National Health service has been warned that it faces a “neurology timebomb” by the Neurological Alliance (a group of over 70 charities and other organisations; Parkinson’s UK, whose article here first alerted me to this story, are among them). The short version of the story is that the number of people being diagnosed with neurological problems is increasing (part of this is due to the aging population), and that the NHS doesn’t seem to know what to do with them. Care is often “haphazard” and interim measures – such as provision of physiotherapy for newly diagnosed Parkinson’s patients – varies according to wear you live in the UK.

The Neurological Alliance is calling for a “neurology tsar” – a political figurehead to champion the cause.

The press have reported on this story:

My opinion? I think it’s a great idea. Better care, more consistent care – this is required. Measures can be taken to ensure that people stay healthier for longer; Pete Langman, in his post on the ballet story yesterday, suggested:

I’m sure martial arts or dance classes for the newly diagnosed, when delivered on the NHS as a matter of course, would save hundreds of thousands of pounds in the long run … and make for much happier patients.

Wouldn’t it be nice? But is the money there, and can the powers-that-be be persuaded to spend it? UK governments are often dreadfully short-sighted, looking only as far as the next election. Will long-term care form part of their plans? How persuasive can the Neurological Alliance be?


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The Beeb Covers Ballet for Parkies

You may recall my post about ballet a while back. Well, it seems that there is still interest from the media in the subject – and from researchers, too.

It’s a video article, and you can watch it here:

English National Ballet helps Parkinson’s patients

The study is being performed by scientists at London’s Roehampton University. I have heard resentment among other people with Parkinson’s that research money is being spent on this – which we already “know” helps – and not on a cure. I would guess that the amount being spent on this is probably very small – the classes were already being run – and I think that it may help to confirm the benefits, and maybe even establish the “best” type of exercise.


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Ropinirole Diary with Lighthouse


I’m pretty certain that the ropinirole is making a difference at 6 mg, but it’s not quite enough

Here’s how it is. I seem to be better able to cope with laces, buttons and zips, so my dexterity is better than it has been. I’m not feeling tired (except when I stay up until two in the morning fiddling with Word documents), I’m not experiencing any obsessive-compulsive problems (well, no more than usual), and I mostly feel pretty good. Apart from my left foot, that is, the toes of which is still curling up with what is most likely to be dystonia.

It’s not just that running hurts; the tops of my toes are rubbing against my shoes, and the muscles ache. I saw a video of myself ambling along a beach on New Year’s Day, and I was limping. I didn’t realise that I limped. You can’t blame the beach – it was hard, wet, sand, easy to walk on. I wasn’t striding along, like I often do (I suspect that there is less of a limp then), but wielding my lovely new-for-Christmas camera, looking for a good shot of the lighthouse. It was a bit of a grey day, but I still think that the results were fairly effective.

Anyway, once Christmas was out of the way and everybody had (mostly) settled into their old routines, I had a good think about this, consulted with my Parkinson’s Nurse, and had a conversation with my GP over the telephone.

So, tomorrow, I’ll start doubling up my 4 mg tablets (giving a total of 8 mg) and see how that goes. I hope to bring you news of the results within a couple of weeks!