Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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I got me ten fine toes / To wiggle in the sand…

My toes don’t always behave themselves. That dystonia that I mentioned once or twice makes them curl up and squash together. The curling up makes shoes a problem, as the toes rub on the uppers. But even without the friction, cured up feet are difficult to walk on, particularly (and here’s the weird bit) in confined spaces. Like indoors.

I am seeing the podiatrist again in just over a fortnight’s time.

But I also had an idea, and I’m trying it out.

Vibram Five Fingers

Strange shoes, with toes!

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Working with Parkinson’s (part 2)

I’ve been working full time for almost 9 months now, and, you know what? It isn’t all that bad. I’d still prefer to be part time, but that has far more to do with having young children and a busy life (not to mention the burgeoning artistic career, of course) than it does with my medical condition.

I can still do my desk job perfectly well. I might get a bit stiff sometimes, but a brisk walk down the corridor to fetch a drink usually sorts that out. And I do feel a whole lot better if I get out for some fresh air and a bit of exercise at lunch time, but that probably applies to everybody, to some extent. I still ride my bike, and it comes in jolly handy at times, too. My dexterity has been largely restored by the ropinirole, but any thoughts I might have had of touch-typing properly with both hands have been dashed to pieces. Not that I could ever touch-type, mind. It’s just that the left hand wouldn’t be able to keep up.

It seems that the drugs do work. Mostly.

Of course, they’ll need adjusting now and then, and eventually things will change and no doubt strange little things will occur. But Parkinson’s is generally slowly progressive, and I’m still holding on to the idea that I (probably) get a good ten years out of levadopa. Which I haven’t started yet.

Oh, and my consultant is happy; she’s extended the interval between appointments to 9 months rather than 6. I’m sure that it’s not just a cost-cutting measure.


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Temporary Tremor Control

I have the possibility of a job interview coming up (that’s all it is: a possibility). Thing is, last time I had a job interview – it was before my diagnosis was confirmed, and also before medication – I couldn’t stop my leg shaking and it looked as if I was completely and utterly terrified. (I was a bit nervous, but no more than you might expect for a job interview.) It was one of those ‘relaxed’ interviews, on comfy chairs set around a coffee table, so the wobbly knee was definitely on display. I’d been able to control my left arm by holding it with the right, but the leg had eluded me.

After I was rejected, I ‘phoned up for feedback and one of the reasons they gave me was that I seemed to be too nervous and that they didn’t think I’d be up to the (limited) customer interaction involved in the role.

So, anyway, that was the last one. What can I possibly do about the next one, if it happens? I don’t want a repeat – even though it’s a different type of role, and is, in fact, likely to have nothing whatsoever to do with customers, I still don’t want to shake uncontrollably during the interview.

I could tell the interviewers, of course – and that is an option I’m considering, but only if necessary. This is for a temporary role – a 3 month contract – and I went so far as to ask the employment agent (with whom I have a good working relationship) for advice. This meant confiding in her, of course. She seemed fairly unphased, and asked the important question: would it affect my work? It’s a desk job, using computers. No, I said. Well, she told me, I don’t think you should mention it, not for a short-term contract.

So, when I saw my physiotherapist on Monday, I asked her if she had any advice. She had two suggestions:

  • Pressure: applying pressure to the affected limb may hide or prevent the tremor.
  • Relaxation: using yoga techniques (breathing, stretches) may also help.

I shall have to try out methods that might work in an interview situation. It may even be that something as simple as crossing my right leg over the left might do the trick…

When I thought about it, I realised that I already use the pressure idea at night. I often find that my left arm – particularly the hand – shakes when I’m in bed trying to go to sleep. So I lay on my left hand side with my left arm behind me, as straight as I can make it. It’s not very comfortable, but it does seem to work. It squashes my shoulder and I suppose it may also be a sort of passive stretch. After a while, the tremor subsides and I roll over to sleep on my other side.