Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

The peculiar land of Dystonia

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Dystonia sounds like the name of a curious little East European country, doesn’t it? A bit like Elbonia in the Dilbert comic strips.

The first Elbonian strip

Or maybe it’s a fancy name for a hearing malfunction (as it happens, I am a little bit tone-deaf. Probably).

Sadly, neither of these is true.

Dystonia is:

“a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.”

(Oxford Dictionaries online)

Dystonia is a serious condition. It can occur as a symptom of another condition (such as Parkinson’s), in which case it is known as secondary dystonia, or as a neurological problem in its own right (primary dystonia). The Dystonia Society (UK) have a great deal of information on the subject.

Parkinson’s UK have an information sheet on dystonia, from which I learnt that it is more common amongst Young Onset Parkinson’s patients, that it usually occurs on the side of the body that other Parkinson’s symptoms are most pronounced, and that “in people with Parkinson’s it is most commonly seen in the feet”. Apparently, “spasms in the calf muscles can cause the toes to curl into a claw-like position”.

Which sounds familiar.

My interest in dystonia was prompted by a short discussion I had with my Parkinson’s nurse at a local Parkinson’s UK seminar in which she was discussing medication. I can’t quite remember why, but I mentioned my recent problem with toe curling and she said that it sounded like dystonia, and suggested that I look it up.

I think she’s right: it does seem an awful lot like dystonia.

She also said that it may be an indication that I am undermedicated. Of course, I can’t increase my dose of Rasagiline, so this means considering the next stage of medication – dopamine agonists or levadopa. That’s a decision that I freely admit to have been dreading.

However, I am due to see the podiatrist again next week, so I will see what she has to say on the subject. My physiotherapist talked about an orthotic device used to spread the toes, and a Parkinson’s UK information sheet on feet refers to a silicon “toe splint” or “toe prop” to remedy problems of this type. It certainly feels as if something like that might help.

At the moment, I’m putting weight on the tips of my toes that really didn’t ought to be there – especially uncomfortable when running – and my shoes are starting to rub. I discovered recently that the unnatural curl in my toes is uncomfortable during a long drive (I seem to use my toes to depress the clutch pedal). The constant muscular tension in the outer-underside of my foot causes an ache, too.

Read about the next visit to the podiatrist.

Read about high-heeled shoes and dystonia.


One thought on “The peculiar land of Dystonia

  1. Pingback: Podiatry Again: Custom Insoles… | Blogging with Parkinson's

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