Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Silver Lining

6 Comments

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Today, as part of a trivial online conversation about music, I realised that it is 25 years since I was at university and spent part of my student grant on bargain vinyl from Woolworth’s on Preston Road, Brighton because they were ceasing to stock actual records.

Woolworths is gone, now, too.

And the person I was talking to hadn’t been born then.

BUT.

My consultant (younger than I, with a confident, enthusiastic air about her) remarked yesterday that I was “quite young”.

I have started attending a local group for people “of working age” with Parkinson’s. Admittedly, I haven’t met everybody – many seem to have been going on holiday – but in the two meetings I have been to, I was definitely the youngest there.

It is a very, very small thing. But Parkinson’s, curiously, sometimes makes me feel young.

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6 thoughts on “Silver Lining

  1. I know what you mean. Having rheumatoid arthritis can make me feel young sometimes. I am always the youngest one in the waiting room at the consultants.

    How come we were both unlucky enough to have ‘old people’ diseases?

  2. Me too! My consultant is probably my age (40) or perhaps a little younger. I have never seen a person under 70 in the waiting room and when I first started seeing him he couldn’t hide his excitement at having “bagged” somebody young. So most days, having Parkinson’s makes me feel ancient but my visits to the consultant, although dreaded, do make me feel very young indeed. I’m so glad to see you posting about Parkinson’s again. It was so frustrating: when I found your blog :you had been writing amazingly insightful and mind-blowingly relevant (to me, anyway) posts; then a month later you stopped! Just my luck. But I do understand your priorities changed. In reference to your last post re Siminet, my consultant is firmly in the “take it – the ten year thing is nonsense” camp, so I have been taking it for a few years. It really does make a huge difference: I am a headteacher of a secondary school which is something else I am widely considered to be too young for, so have definitely something to prove, so hate the thought of my staff, colleagues, pupils, governors etc seeing a “weakness”. I take madopa (largely the same as siminet) and it really gives me the best disguise I could hope for. I too suffer from dystonia – in my feet and sometimes I have several days of bouts of it affecting my neck (very hard to hide) and the drugs do help with it (I still get it but it’s far more controlled and now mainly a problem in the morning when I am clearly unmedicated ). But my stiffness and tremour are really well controlled. Of course, this disease has a personality of it’s own so occasionally it gets it own way and will beat the drugs, but this isn’t regular (and is definitely at times of high stress. I have definitely noticed more significant breakthrough tremours at stressful times). I had my appointment with my consultant last week and it was the best one yet. He too suggested I use the madopa on a more “when you need more/less” basis which felt incredibly liberating. I also take Azalect but have never taken an agonist. His attitude this time, given the amount of reading I do, was “you decide”. Honestly, it felt like he was holding his Prescription pad out and saying ” patient: heal thyself”. But in a good way. So in his letter, he is telling my GP all the options we discussed and I can make decisions about what I want to try as and when I decide. Including adding in an agonist which terrifies me for some reason.

    Wow.

    This is the most I have ever spoken about my Parkinson’s. I kind if try to bury it as much as possible. Once again, so thrilled to see a couple of posts from you. Let us know how your travels with Siminet goes. Good luck. Rachel.

    • Thank you for your comment, Rachel. I suppose that I just didn’t have much to write about recently (and I haven’t been reading my research alerts either; no doubt I have missed something hugely important – like this apparent trend to let patients adjust their own dosage!)

      The timing of my silence was unfortunate. Thank you for being so understanding!

      It sounds like you are doing really well. It can’t be easy being the head of a secondary school, even without Parkinson’s – or being seen as “too young” or, indeed, with the added pressure of the dreadful hostage situation thing and the media attention. Your experience regarding dystonia and Madopa is good to hear about; I am (even) more hopeful that my feet will behave themselves better with a bit of extra dopamine enhancement from the new-to-me drug.

      I seem to recall talk of a campaign for greater patient control over their medication – both Parkinson’s UK and the CPT have, I think, advocated this. What we have both seen in the way our consultants are offering us choices may be a result of these ideas coming to fruition.

      It’s interesting to see that you haven’t spoken much about your Parkinson’s until now. It is much nicer to ignore it as much as possible (I often do that), and, in your position regarding your career, I can see that you need to hide it. Did you find it a relief to write about it, though?

      Do keep in touch.

    • Post Script:

      Re. dopamine agonists, many consultants are wary of them because of the potential for extremes of behaviour. I was told that:
      – it was worse for younger people
      – it was particularly risky for younger men
      – the drugs tended to exaggerate behaviours that already existed
      My current consultant said, on Friday, that she would never have put me on an agonist (I was offered a choice at the time, which I appreciated, but found – if you will excuse the pun – agonisingly difficult). She also said that there was (no longer seen to be) any benefit to taking the agonists in preference to a levadopa-based medication.

      So I suspect that you are right to be wary, yourself.

      • While I only have anecdotal comparisons, on balance I would say that the ropinirole has been fairly kind to Zalamanda. Yes I have seen some behavioural changes, but they’ve been mostly mild and liveable-with. The more pronounced ones have required (and continue to require) some active management but we’ve worked through it.

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