Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Don’t it always seem to be…

You don’t know what you got ’til it’s gone.

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Joni Mitchell’s song, drawn in a sketchbook by me in 2014

I’m really missing sleep. I used to sleep very heavily (it’d take me a while to get there sometimes, but I didn’t used to wake up worth noticing before I had to, and even then I was very good at sleeping through alarms). Now I wake up in the wee small hours and I can’t get back to sleep.

It isn’t as bad as is has been, but it’s still not great. Last year, when I started taking Sinemet, I was waking up at 3am on a regular basis. Tired but not sleepy.

My consultant supposed that it might be an interaction between the two drugs, Sinemet and Ropinirole. You need to be careful coming off Ropinirole, as with all dopamine agonists, and do it gradually. There are horror stories of eternal depression as a result of DAWS (Dopamine Agonist Withdrawal Syndrome); it seems to be a greater risk if you experienced a severe impulse control disorder as a result of taking the dopamine agonist. I’m very glad to say that my artistic impulse was not unduly increased by the Ropinirole I was taking (coincidence of timing might have made it seem so from the outside) and that I have not had any trouble coming off Ropinirole.

The Ropinirole is gone. I’m not taking it any more. It’s been gone for three or four weeks and I don’t miss it.

But I do miss that sleep. Like I say, it’s not as bad as it was. It’s usually 5am that I wake up at at the moment. And when I do wake up, it’s blatantly obvious what’s wrong – my muscles are stiff and I’m shaking and it’s really uncomfortable. My medication has worn off. I know that I need to get up in around two hours and so taking a “bedtime” medication isn’t a good idea. I can either get up and start my day early (and slowly), or I can try and tough it out without fidgeting too much (my husband is a light sleeper and is also suffering from my lack of sleep).

I think it’s time to talk to the consultant again.

 

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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.


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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.