Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Downside

Happy Christmas

Happy Christmas

[This post relates to my last-but-one post, “Don’t it always seem to be…”]

I spoke to my consultant. Apparently this tiredness could be part of the withdrawal from Ropinirole, which can  make you “a bit hyperactive”. I think that’s what she said (I think I was, at times). But she also said that it will pass, and that I will reach an equilibrium.

And I’m going to try a modified release Sinemet, which should help to even out what they call the “on” and “off” states.

I refuse to stay down here for long. I’m looking for the UP escalator. Anybody know where it is?

 


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Mervyn Peake winning entry shortlisted for Artist of the Year competition

This is a cross-post from my art blog. It’s relevant here because the painting that got me shortlisted was orignally inspired by the Mervyn Peake Awards (Parkinson’s UK) theme, “Inspire”. I’m also posting it here because you can help me – there is a Reader’s Choice vote online and I’m told that it is hotly contested and I should ask all of my friends and acquaintances to vote for me.

The UK magazine Artists and Illustrators runs an annual artist of the year competition. I entered it and was delighted to hear that the judges had shortlisted my  Shelves of Inspiration. There are 50 artists on the shortlist, and all of the pieces will be on display 23 – 28 Janaury 2017 at the Mall Galleries, London.

Part of the competition is a Reader’s Choice vote. If you want to vote, you can see the whole shortlist here:

If you know that you want to vote for me, click here.


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Don’t it always seem to be…

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

bigyellowtaxi1000

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.