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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Welford Parkinson’s

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Bluebell woods at Welford Park, Berkshire

Somwhat belatedly, here are some pictures from our walk in the Park in April. I carelessly allowed my camera batteries to go flat, although the camera in my smart phone was able to take reasonable images in the brilliant sunlight that we all enjoyed that day. The ink in my assorted fountain pens didn’t run out, though, and I made a fair few walking-sketches…

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Jenni from Parkinson’s UK, the organiser of the walk, talking to the assembled walkers at the beginning of the walk

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The official photographer. The incongruity of drawing photographers at work appeals to me…

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Assorted scenes from during and after the walk


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A walk in the Park

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Welford Park, a private estate near Newbury, is known for its snowdrops (the ones above were in Kingsclere) and – more recently – as the location for the television show Bake-Off. I’ve not been to see the snowdrops before (although I intend to every single year) and I don’t think I’ve seen the Bake-Off on television (there are no intentions in that direction). But I am going to be visiting Welford Park, with my family in tow, for another Parkinson’s UK sponsored walk.

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Walk Oxford

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The Radcliffe Camera in Oxford, sketched during the London Urban Sketchers’ Oxford Sketchcrawl

Oxford is a very attractive town. I last visited it on a “Sketchcrawl” organised by a friend for the London Urban Sketching group. I seem to recall doing quite a lot of walking that day, but it was interspersed by stopping to make¬† drawing or two.

My next visit to Oxford (which is about 40 miles away) will be in order to take part in another organised event: a sponsored walk in aid of Parkinson’s UK. This time my husband and children will be joining me. We’ve signed up to do the full eight miles. All of us.

The walk is on the 25th of October (not very long to go!).  Wish us luck Рand, if you would be so kind, please sponsor me:

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Newbury to Watership Down… and a few miles extra

Well, I walked the walk.

It turned out to be 11.4 miles. I toogooglemapk an option which reduced the road-walking miles but missed out Nuthanger Farm and the steep bit of Watership Down. This was partly down to me misreading the map, but was probably a good thing as far as my feet were concerned!

The map shown to the right is a link to the Google map that I plotted my route on to determine the distance.

One of my lovely friends gave me a lift to the far side of Sandleford Common in Newbury. The theoretical end of the walk was White Hill, at the end of Cannon Heath Down, where there is a road and a car park, but I walked a few miles more to get home.

During my walk, I texted brief progress reports to Facebook. I’ve copied them here (in italics) and added photographs and extra details. Continue reading


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I got me ten fine toes / To wiggle in the sand…

My toes don’t always behave themselves. That dystonia that I mentioned once or twice makes them curl up and squash together. The curling up makes shoes a problem, as the toes rub on the uppers. But even without the friction, cured up feet are difficult to walk on, particularly (and here’s the weird bit) in confined spaces. Like indoors.

I am seeing the podiatrist again in just over a fortnight’s time.

But I also had an idea, and I’m trying it out.

Vibram Five Fingers

Strange shoes, with toes!

Continue reading