Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Fatigue

I think I am suffering from fatigue.

Fatigue in Parkinson’s is an acknowledged “non-motor” symptom (that is, it is not a visible sign of motor impairment such as tremor or slowness). However, it is not necessarily as well understood as some non-motor symptoms, not least because it has an assortment of possible causes.

Fatigue is a common symptom of depression, and depression is a common symptom of Parkinson’s. But that doesn’t mean that fatigue in Parkinson’s is due to depression and in my case, I’m pretty certain that it isn’t. I don’t feel depressed.

Just as depression is more than feeling down in the dumps, more than a temporary period of pessimism, fatigue is more than just being tired or sleepy. It’s difficult to describe either difference (as I perceive them) except to say that there is a different quality, an intensity of experience in both cases. I have only skirted the edge of depression once, and that was some yeas ago, but I got close enough to recognise it as something other. What I feel now is not that, but it has the same desperate overwhelming type of effect and it is purely to do with feeling tired, sleepy or weary.

I think that at least part of the cause, for me, is my recent change of medication. My consultant suggested to me that ropinirole can instil a form of hyperactivity (which I think may have buoyed me through previous shortages of sleep) and that coming off ropinirole (as I just have done) can result in a period of sleep problems and consequent tiredness.

Sleep at night is a problem, although it’s not as bad as it has been. I go to sleep reasonably well, and at a reasonable hour, but I often wake at 4 in the morning. Most nights (usually after visiting the bathroom) I can get back to sleep for a couple of hours. I’m not often overly troubled by Parkinsonian tremors or rigidity at these times, which seems to indicate that I’ve more or less got the levels of controlled release Sinemet right.

And my difficulties sleeping don’t just affect me. My husband is a light sleeper and I have inadvertently woken him or disturbed his sleep on countless occasions.

General weariness combined with sudden, intense increases of tiredness during the day are a big problem. These are the main reasons I think that I am fatigued rather than tired-because-I-didn’t-sleep-well.

Curiously, I can sleep for up to two hours if I allow myself to when I feel this intense tiredness. I can also ignore it and eventually it dulls, or push through it by doing something physical, but neither of those are easy. I can’t nap unless I’m in that period of intense tiredness (I’ve never been able to nap in the past), and it’s not every day that it’s convenient or possible to nap when my body tells me it needs to sleep. It’s a bit difficult to collect children from school at 3:20 if you let yourself go to sleep in the early afternoon.

I don’t feel right napping in the day. I do feel better after a two hour nap, but not for long, and I’m concerned that it might be adversely affecting my sleep that night.

So I had a bit of a hunt around on the Internet to see what I might be able to do. Advice from Parkinson’s UK and the Michael J Fox Foundation (two organisations that I trust) points very strongly in one direction:

I need to exercise more.

 

References:

Parkinson’s UK Information sheet
https://www.parkinsons.org.uk/content/fatigue-and-parkinsons-information-sheet

Michael J Fox Foundation on Fatigue: “Why can’t I seem to get anything done?”
https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?fatigue

Michael J Fox Foundation on Fatigue: 7 ways to help fatigue
https://www.michaeljfox.org/foundation/news-detail.php?ways-to-help-fatigue-in-parkinson-disease

2009 articleby Jonathon H. Friedman MD (noting the doctor’s clinical responses to fatigue in Parkinson’s) https://www.ncbi.nlm.nih.gov/pubmed/19364453

2005 article by Jonathon H. Friedman MD (summary of what fatigue in Parkinson’s is) https://www.apdaparkinson.org/uploads/files/Fatigue-8-25-vj8.pdf


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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.

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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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Morality and Parkinson’s

I recently had cause to take a good hard look at my own behaviour, and the way in which I was reacting to other people.

It’s difficult to accept that you might be selfish or careless of other people’s feelings. It’s also far too easy to blame it on an illness – or the drugs used to treat that illness – especially if you are aware that this is a possibility.

Which it is…

In July 2015, a study was published that suggested levadopa (the most prevalent treatment for Parkinson’s, and the key ingredient in the Sinemet that I take) made healthy subjects more selfish. The same study also looked at an antidepressant drug that increased serotonin levels, and that drug was found to make people more caring.

To my mind, the study was based on a simplistic and fairly extreme premise, probably out of necessity – morality is difficult to measure. The study used the choice to deliver a painful but not intolerable electric shock to either oneself or another person (not present in the same room). In both cases, cash could be paid to prevent the shock. The amount that people were prepared to pay to avoid harming themself, and to avoid harming another, was monitored and compared. The findings can be summarised as follows:

  • those whose serotonin levels were increased were willing to pay significantly more to avoid harm to another than to avoid harming themselves
  • those whose brain chemistry was unchanged (because they took a placebo) would still pay more to avoid harm to others, but not as much as the increased-serotonin group
  • those whose dopamine levels were increased paid equal amounts to avoid harm to others and to avoid harm to themselves

I would like to think that, even with levadopa, my judgement would err towards the altruistic avoidance of harm to another. And perhaps it would – the results were, after all, averages. However, I have never, to my recollection, found myself in that sort of situation.

But what if the situation was more subtle? If it were more a matter of insensitivity, not paying full attention to what others were doing, increased focus on the self? If it were a matter of taking opportunities without paying heed to the limited nature of the opportunities and to other’s desires to take the same opportunities? I think I have been guilty of these things. I’m not sure that it is entirely down to drugs, either; at least some of it is inherent in my personality (I know that I am quite good at some things, and I also know that I can come across as patronising or condescending as a result of the first knowing without meaning to; I try to guard against this tendency, but I do not always succeed). At least some of it must be due to Parkinson’s itself – the difficulties in doing things that didn’t ought to be difficult, that didn’t used to be difficult, and the self-awareness that comes with the process of constant adjustment (because the effects of Parkinson’s vary from day to day, from hour to hour, and gradually become more frustrating over weeks and months). And another part, again, is a result of the knowledge that, because I have Parkinson’s, my timescales are reduced.

Interestingly, I have recently started taking an antidepressant called mirtazapine. This is not the same drug that was used in the study (that was citalopram); it is described as “an atypical antidepressant” because it only targets one type of serotonin receptor in the brain. But it does still increase serotonin levels.

I take mirtazapine to counteract the excessive wakefulness that sinemet causes (that is, it helps me sleep). Might it also go some way to counteract the apparent selfishness that sinemet causes?


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Mervyn Peake Awards 2016

2016-07-06-1-London-1000The Mervyn Peake Awards 2016 were presented on Wednesday 6 July at the OXO Gallery, London. That’s on the South Bank (of the Thames), a short walk from Waterloo station. There was an awards ceremony and exhibition launch event in the afternoon and a VIP preview in the evening.

The exhibition is billed as a celebration of the creativity of people with Parkinson’s, and it is the first year that a full exhibition, open to the public, has been held in such a prestigious location. I have two pieces in the show: Ridge, a landscape that was shortlisted for the art award and Shelves of Inspiration, a composite still life and imaginary piece that won the multimedia themed award, “Inspire”.

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As a winner of one of the awards, I had been invited to both events, along with my guest, Sophie (aka PollieMath). It was truly wonderful to have Sophie’s company; we have much in common and had a lot to talk about… and a lot of things to draw.

2016-07-06-SouthBank1a 2016-07-06-1-StPauls 2016-07-06-SouthBank2

I must admit that I found the whole being-a-winner-experience rather odd. I’m not used to the attention, although I did appreciate all of the positive comments about the winning painting. Inspiration is a very individual thing, and this painting was a very personal piece, and one that I spent a lot of time on – both planning and painting it.

I duly received my award from the fabulous Anders M. Leines, Norwegian photographer responsible for the thought-provoking exhibition “This is Parkinson’s”. Anders asked me if I had anything to say. “No”, I replied (which at least amused the audience), and offered me a hug. That was nice.

The full video version of Ander’s exhibition is on display at the Mervyn Peake Awards exhibition, which is still running – on until 10 July – so, if you’re in London this weekend, do try to visit it.

And if you do visit the exhibition, I’d love to hear what you think.