Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


High-powered MRI may provide Test for Parkinson’s

One of the peculiarities of Parkinson’s Disease is that there is no definitive test for it. To be sure, you get a battery of tests on the NHS, but they (blood tests and an “ordinary” MRI scan) are all to check for alternative diagnoses, not to see if you actually do have Parkinson’s. There is a scan which makes use of a radioactive chemical called Ioflupane (123I), or DaTSCAN – this makes dopamine transmitters visible to a gamma camera, and so should allow levels of dopamine to be registered. However, it is not a conclusive test and is often considered too expensive. When I asked my consultant about it, he was quite dismissive (whether because it was unlikely to work in my case or because of the cost, I am not sure).

Only yesterday, I came across an article that suggested that many cases of Parkinson’s were misdiagnosed.  It seems to have been news in 2006. Which is quite a long time ago; the implication in the article is that GPs (family doctors) lacked experience with Parkinson’s and that a specialist should make the diagnosis (they do this by knowing what to look for – it’s quite vague but experience, it seems, helps a lot).

Anyway. Back to the matter referred to in the title. A research institute in Canada has a 7 Tesla MRI machine – exceptionally strong for a medical design (standard medical MRIs are around 1.5 Tesla) – which allows them to get a particularly high-definition scan of the brain. Apparently, it is possible to see the difference between a Parkinsonian brain and a normal one using this equipment. Continue reading


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Al-Jazeera blunder

My husband was watching the news on Al-Jazeera (I wasn’t wearing my glasses, so I was only listening). They were covering the imminent beatification of Pope John Paul II. I caught the phrase “… who died of Parkinson’s Disease”.

The statement is repeated in this article on their Web site, where it says:

He died on April 2, 2005 from his acute case of Parkinson’s.

That’s wrong. You don’t die of Parkinson’s Disease. It can severely affect your quality of life, and may sometimes contribute to a cause of death (falling, for example), but it doesn’t actually kill. Complications of the later stages of disease can cause death (respiratory problems, for instance), or (in some cases) side effects of the medication may contribute to mortality.

Al-Jazeera’s archived article about the Pope’s death in 2005 does not make this claim. Instead, they talk about his suffering from Parkinson’s but are careful to note that the Vatican’s statement “did not give a precise cause of death”. The BBC referred to his heart and kidney problems in their 2005 article. I think that that’s more likely.

Interestingly, the miracle ascribed to Pope John Paul II that permits his beatification is his alleged posthumous “cure” of French nun Sister Marie Simon-Pierre’s “Parkinson’s Disease”. My take on this is that Sister Marie Simon-Pierre was misdiagnosed and did not have Parkinson’s, but another neurological condition with similar, “Parkinsonian”, symptoms that had gone into remission for some reason. Diagnosis of Parkinson’s Disease is an inexact science, or possibly an art.

Regarding the mortality of Parkinson’ patients, the following paper may be of interest:

Mov Disord. 2003 Nov;18(11):1312-6 (abstract only)

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Current Symptoms: October 2010

I’ve alluded to some of these in other posts, but it seems as if it is worth describing exactly what it is like (for me) to have the early stages of Parkinson’s.

I suppose that the thing that springs to mind, for most people, when you mention Parkinson’s, is the tremors. Shaking, palsy – call it what you will, it’s the same thing. But a lot of things characterise Parkinson’s and, as I understand it, tremors are not the most conclusive. When I was first diagnosed, my mother told me a dreadful little story about one of her elderly neighbours, who was apparently diagnosed with Parkinson’s and then, several years down the line, he was told “Oh no, you haven’t got Parkinson’s – it was just a bad case of the shakes”. I think she intended to comfort me with that sorry tale of casual misdiagnosis (followed by such a vague alternative!), but it really didn’t work – not least because “the shakes” were barely there at all for me.

My own symptoms seem to be characterised by a tenseness. It feels as if every affected part of my body (with the possible exception of that sticky out thumb) is trying to curl up into itself. My left arm doesn’t hang straight; it bends at the elbow. The fingers on my left and cleave tightly together (so much so that you can see the white pressure points) and curve just a little too far in towards the palm. The thumb often sticks out, almost at a right angle. The toes on my left foot curl in towards my foot, and the foot itself is, more often than not, pointing in towards the unaffected right foot. This causes my left foot to roll outwards, so that my weight rests on the outer edge of the sole, which is not comfortable. All of the muscles down my left hand side seem to be pulling at once, all the time.

Constant tension results in muscular ache, which I can relieve somewhat with exercise. Yoga helps with this – it’s all that stretching – but so do vigorous aerobic types of exercise.

I did think, at one point, that the tension might cause the tremors (all that taut energy must be released somehow), but my consultant disabused me of this notion. Apparently they are separate.

I do get tremors. They are usually quite mild, but they increase with nerves and, to a certain extent, tiredness.

Then there is the lack of response. One person, more knowledgable than many, asked me if I got paralysis. Slightly taken aback – I had never thought of it in these terms before – I acknowledged a certain selective, temporary paralysis. But really, it is just slowness. Everything will move – just not always straight away, and not always as rapidly as I’d like. Apparently it is not uncommon, later on in the progression of the condition, to feel as if your foot is stuck to the floor.

Part of that slowness is a sort of jerky, ‘cog wheel’ motion. Smooth movement is one of the things that dopamine does for you. Lose the dopamine, and the smoothness of movement goes. I sometimes feel like a robot in need of oiling.