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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Relaxation Exercise for the Hands

This is a simple exercise that I learnt during the physiotherapy class in which we attempted visualisation.

(c) ZalamandaIt’s very easy. It probably doesn’t need illustrations, but I’ve done some anyhow.

Make you hands into fists – as tight as you can.

Then release the fists and stretch out the fingers to make a star shape – as wide as possible.

A few repetitions should release some of the tension that has built up in the hands and forearms (my left hand gets very tight at times; it’s uncomfortable, verging on painful) and may also restore some of the ‘lost’ function for a short time.

I find it slightly easier to do this exercise with both hands simultaneously; the able right hand ‘leads’ the left. It certainly loosens the affected hand up, and it does seem to help with functionality. I hardly lost any ‘A’s on that last bit of typing!

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Incidentally, even with a half-frozen left hand, the darn thing doesn’t stay properly still to be drawn! I had to reposition it (a trivial task) several times for each drawing.


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Relaxation via Visualisation: an anecdote

Relaxation techniques can be very useful to people with Parkinson’s. It makes sense: if your muscles tense up involuntarily, it should be possible to relax them deliberately and to attempt to stop it happening too often.

On Friday, I attended a class organised by my enterprising physiotherapist, one of a series designed for people with a recent diagnosis of Parkinson’s. The attendees are, naturally, a mixed bunch, but I am, at 40, the youngest there; I think I may also be the closest to the beginning of my Parkinson’s journey. I was feeling a bit tentative this week, because my overall fitness has been impaired by a chest infection that I’m still getting over. I’d managed, earlier, to participate in my yoga class that falls, coincidentally, just before the physio class (it’s a bit tight getting from one to the other, but it just about works). I thought I might have to sit out anything too energetic, but, fortunately, this week’s theme was relaxation.

We went through  few techniques familiar to me from my yoga classes, notably breathing and body awareness. We were encouraged to adopt the position known, in yoga, as the corpse pose (Savasana). This is a very simple pose, being essentially lying flat on your back on the floor with your arms and legs flopped out, palms up (if possible – my left wrist is stiff but I can just about make it turn enough). This pose is particularly advantageous because it also helps promote good posture – something else that becomes an issue when you have Parkinson’s.

Line drawing (made without a model) of the "corpse" relaxation pose. (C) Zalamanda

And then we tried a visualisation exercise, which entails imagining yourself in a relaxing place.

One of the most common relaxing places seems to be the beach. Off we went. A relaxation CD was playing pleasing wave noises. We were encouraged to think of lying on the beach, the waves lapping at the shore.

I think my imagination is a bit overactive.

Anyway, I started worrying about suntan lotion and wondering where my book was. Then palm trees got mentioned and suddenly we weren’t in Cornwall anymore. I decided it was too hot for me (and that I’d get sunburnt soon) and zoned out of the visualisation (by this time, some annoying synthesiser music had appeared alongside the waves on the CD, so I tried to block that out, too) and just concentrated on breathing and body awareness (which included tensing and relaxing groups of muscles).

I’m not saying that visualisation doesn’t work for me. I think I could build my own, and have fun doing it (at the moment, I’m favouring a moorland scene with a stream burbling nearby). Probably my biggest problem was that I’m not much of  beach person – or rather, that I’m not a sun worshipper. I like to walk along beaches, to build sandcastles with the kids and maybe read a book if I’m feeling lazy, but I’ve never been one for sunbathing.

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Interestingly, in the preceding yoga class, we’d done a similar exercise albeit without the visualisation. The doors were open and we could hear the birds singing outside… lovely. Then a Chinook came over – but, somehow, it didn’t quite spoil it for me. The birds were still singing after the helicopter had gone.