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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The Tale of a Parkie Princess, by Annie Konopka

Further to my posts about books about Parkinson’s for children, I have now received a copy of Annie Konopka’s “The Tale of a Parkie Princess”.

It’s a simple tale, and it seems to be aimed mainly at younger girls, although that doesn’t exclude younger boys (many of whom, untainted by society’s expectations, are quite happy to like pink and identify with female characters). The illustrations are by the author’s own children, which is sweet.

The explanations are simple – “[The doctor] told her that her brain was not working as it should, but he could give her some medicine to make her feel better” – and the drugs do, apparently, work, although they still leave Princess Parkinsonia (who is a mummy) shaking a bit, walking funny and unable to “do things as she did before…”

But everybody loves her, and love is all-conquering in fairy tales, so there is a happy ending even though she doesn’t get better (after all, how could she?).

I’m a bit ambivalent about this book. I’m trying really hard not to be annoyed by the occasional grammatical slip or that rather pointless collection of stray exclamation marks on page 9. So, ignoring that, and thinking only about the story, I find it insubstantial but appealing. My daughter loves it, and my son (who is 7) seems rather fond, too. I think that it does a good job of targeting the younger age group, and it isn’t sad and depressing. It refers to a parent – specifically a mother – with Parkinson’s, and it doesn’t feel like a rewrite of a book about a grandparent (because, of course, it isn’t). It mentions diagnosis, and expresses how shocking that can be (that’s where those exclamation marks were), and it refers exclusively (albeit obliquely) to the early stages of Parkinson’s. Which is fine, because children are not that young for very long, and their parent is unlikely to have progressed significantly during the time that they are so very young.

“The Tale of a Parkie Princess” is a good book for younger children whose parents are affected by Parkinson’s , but I don’t consider it to be essential.


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Children’s Books about Parkinson’s (part 2)

In my last post, I talked about explaining Parkinson’s to young children and discussed a couple of children’s books published by the charity Parkinson’s UK. I have been fortunate to have been loaned a couple of other books for children on the subject, and these are discussed below.

  • Rasheda Ali, the daughter of Muhammad Ali, has written an excellent reference work:

I’ll Hold Your Hand So You Won’t Fall: A Child’s Guide to Parkinson’s Disease"", by Rasheda Ali-Walsh

Although not close to her father at the time of his diagnosis at the age of 42, Rasheda has since become more involved in his life. This book was written, in part, to attempt to answer the questions that her own children had about their grandfather’s condition.

This book deals mainly with the more severe problems that Parkinson’s can cause. I do think that it does so very well, but I also think that it could be confusing and potentially scary for younger children who have only encountered the earlier symptoms. No age guidance is included, but I would guess that this book would come into its own for children aged 8 or older. To be honest, I imagine that it would also be useful for an adult.

There is a lovely interview with Rasheda here.

  • Kay Mixson Jenkins, who developed Parkinson’s at the age of 34, wrote her book, Who is Pee Dee, for her own four year old son.Amazon.com link

Who is Pee Dee?, by Kay Mixson Jenkins

Colt’s mother has Parkinson’s, but he doesn’t understand. He overhears the grownups talking about ‘PD’ (Parkinson’s Disease), and, somehow, his toy – a panda bear – becomes conflated with the condition. The toy comes to life and, without denying responsibility, explains some of the symptoms – which manifest as Pee Dee’s brightly coloured cousins – and describes how Colt can help his mother.

The reviews on Amazon.com are laudatory, but I have to say that I find this book a little confusing. It is a very imaginative way of dealing with the condition, and I must confess that I have not yet read the book to either of my children, but I am not sure how they will take it.
*See my comment below*

I’ll also admit – and I feel slightly embarrassed by this, because I don’t think it should matter at all – to disliking the illustrations. They are bright and colourful, and maybe it is only me who is bothered by the squashed faces, stiff figures and general awkwardness.

Note: The edition that I have to hand has a Web address on the back: www.whoispeedee.com but, sadly, it seems that the site no longer exists.

Additional Note (post script): A Web edition of the book, read by a lady with an English accent, is available as a resource at the pan-European site, Parkinson’s Voices.

While researching this post, I also came across another children’s book, entitled “The Tale of a Parkie Princess” by Annie Konopka. Edit: You can read my review of that book here.

I really ought to steel myself to reading some of these books with my children. I think I’ll find it harder than they will.


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Children’s Books about Parkinson’s (part 1)

Following on from my last post, another difficult topic that a young child may need to begin to understand is, of course, Parkinson’s. Particularly if a parent has Young Onset Parkinson’s. I don’t know how much they need to understand; of course, it depends on so many factors: the age and maturity of the child, the nature of the parent’s symptoms, and, of course, how ‘open’ the parents choose to be.

So far, I have talked to my children about my ‘poorly arm’, and how it doesn’t work as well as it used to. This is the most obvious aspect of my condition, and both children (ages 6 and 4) accepted my simple explanation, which (in its extended version) included an analogy with a computer. They also seem to accept that it isn’t going to get any better, and that mummy can’t help them much with buttons or shoelaces (I can just about do my own laces, but somehow it is much harder to do someone else’s).

There does not seem to be a glut of books about Parkinson’s for children. These are the ones that I have read:

  • Virginia Ironside, agony aunt, columnist and author, has written a story for children aged 3-7 that is published by Parkinson’s UK in four versions:

My Dad has Parkinson’s
My Mum has Parkinson’s
My Grandad has Parkinson’s
My Gran has Parkinson’s

I have seen My Mum… and My Dad… , which are basically the same, with superficial differences in the text. Parkinson’s is explained to a fictional child by the parent without the condition, and the afflicted character doesn’t really do anything and does not have a voice in the story.

The explanations are good, although a bit lengthy for a 3-year-old, and the story is quite upbeat as the child is reassured at the end.

Virginia Ironside’s books are available free of charge from the Parkinson’s UK Web site.

  • Parkinson’s UK also publish the following story for slightly older children (ages 8 to 11):

Karen Goodall, My Mum has Parkinson’s

I like this book very much. It is written by a primary school teacher who has Parkinson’s herself, and it does a pretty good job of describing the early stages of Parkinson’s from the point of view of her daughter, Megan. Megan has an older brother and a younger sister, and their mum is a single parent. Megan’s voice is cheery and chatty. Megan’s mum is portrayed as being capable and independent despite the difficulties she encounters.

Karen Goodall’s book is available free of charge from the Parkinson’s UK Web site.

This post is getting a little long. I’ll talk about a couple more books – both published in America – in another post.


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Children’s Books: Difficult Subjects for the Very Young

Many topics have been covered in children’s books. Sometimes, fiction is the best way to understand something – it can help both children and adults come to terms with difficult situations. Of course, this doesn’t preclude non-fiction; sometimes a clear explanation is all that is required.

I think that the really ‘heavy’ topics are very difficult to address for very young children. Of course, many would argue that the very young do not need to understand this sort of thing, but there are circumstances that seem to require accelerated understanding. Small children can, also, be surprisingly open to understanding. In many cases, the difficulty lies in finding an appropriate way to introduce such a topic, and this is where parents and carers may find a book useful as a prop.

One of the most dramatic topics that a young child may need to understand is that of death.

My son was just three when one of his young cousins died. I discovered then that the available books for his age dealt largely with the deaths of older relatives or of pets. It isn’t surprising; these are probably the most likely losses that a child will have to deal with, and, to be honest, a book about the death of a young child could be disturbing to the writer, the reader and the listener.

We settled on a book called Badger’s Parting Gifts, by Susan Varley. It’s a gentle, secular exploration of what the loss of a valued member of a community means to those left behind. Another book that was recommended to us at the time was Goodbye Mog, by Judith Kerr, the last in the series of Mog the Cat books.

My next post discusses children’s books about Parkinson’s.