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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Ouch!

I must confess that my back has not been entirely right for some time. But I realise that the tension across my shoulders is most likely to be Parkinson’s-related, and I know that it’s something I’m probably just going to have to put up with. But a few weeks ago, something happened to my lower back – it may have been related to moving a big box of books (or it may not) – and I started getting sharp pains, when I leant at a certain angle, that were totally different.

I tried waiting for the pains to go away. I tried mild pain killers (paracetamol, ibuprofen). Still there. Painkillers had little effect. It seemed to get better as the day wore on and I went about my usual activities. Exercise seemed to help – but not running (too jarring), and I didn’t fancy cycling either (too fixed in a bent position). Walking good. Yoga OK, mostly. Housework quite painful. Painting (pictures), thankfully, quite acceptable, but probably not beneficial with respect to my back.

But the pains still came back. So yesterday I went to the doctor’s. The chap I saw is very agreeable (almost overly so; you suggest a cause and he says yes, that’s probably it. Must stop putting ideas in his head). He gave me a prescription for co-codamol (paracetamol with codeine) and some cautions about using it, and suggested swimming. Oh, and he agreed that being distinctly lopsided and stiff with Parkinson’s has probably inhibited the natural recovery. Probably.

Must make time to get to a pool. I know he’s right about that one. Even without the back pain.


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Multi-Tasking, Dopamine, Tiredness and Marie Claire

I don’t usually pay much heed to what fashion magazines say, but flicking through the pages of November’s edition of Marie Claire (bought partly because the free tube of hand cream on the front reminded me of a tube of paint), I came across a snippet that neatly drew together a few things I’ve heard and read elsewhere.

5.TOO MUCH MULTITASKING
[…]
Simultaneously reading your email, chatting on the phone and doing bottom firming exercises at your desk isn’t necessarily productive. ‘Multitasking overstimulates the dopamine system,’ says Professor Paul Gilbert, consultant psychologist and author of The Compassionate Mind […]. ‘Dopamine is a chemical linked to rewards, drive and vitality and is easily depleted. When stores are low, this can lead to listlessness and depression,’ he explains. Professor Gilbert suggests balancing dopamine release by stimulating your endorphin system – the positive emotional pathway in the brain responsible for well-being. Try gentle activities such as gardening, hiking or meditation.

from “12 Reasons You’re Tired All The Time,” by Anna Magee, Marie Claire, November 2011

Potatoes. Harvested.

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Influenza: Inoculation and Parkinson’s

A medical syringe. Image by Biggishben, from Wikipedia.

I have an appointment for a ‘flu jab next week.

The Internet is stuffed to the gills with stories of how ‘flu vaccines cause neurological conditions, yet the medical establishment are urging those of us with neurological conditions to get inoculated against influenza.

The UK Department of Health says:

People who have a liver disease, heart or chest problems, neurological conditions, those aged 65 or over and all pregnant women are among the groups being urged to make an appointment with their GP to have a flu jab if they haven’t already done so.

Source: http://www.dh.gov.uk/health/2011/11/remember-to-get-your-flu-jab/

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