Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Fastenings: Shoelaces, Buttons and Zips

It’s the little things that get you – at first, at any rate.

Take fastenings on clothing. Buttons, zips, shoelaces… I’ve had problems with all of them in the past year. More a frustrating slowness than anything else, but when you’re also trying to jolly along two small children on their way to school, clumsy hands are the last thing you need.

Image from Wikipedia.

Buttons can be tricky because they require a fair amount of dexterity in both hands. I can do the button on my jeans without too much trouble, but shirt buttons have proved a little more troublesome (it’s easy not to wear shirts with buttons, mind). The worst culprits are the buttons on the duvet covers – I’ve even resorted to asking my children to do those up for me! I’m not sure why that should be – perhaps it’s the angle, or maybe the large, flat button is somehow trickier. It’s a shame we don’t have more duvet covers with poppers on them at home.

Plastic and nylon (coil) zips. Image from Wikipedia.

Zips are quite variable. I sometimes have trouble connecting open-ended zips, such as are found on jackets (again, jeans are no trouble).

I had two waterproof winter jackets. One is a mens’ jacket, and, although it has a good quality plastic zip, it is actually a little long for me (most of my height is in my legs; I used to do the double-ended zip up and then undo the bottom inch). This winter, I have found that that extra length makes starting the zip off – i.e. connecting it – difficult. The other jacket is much newer, and is a shorter, ladies’ jacket. Unfortunately, it has a cheaper coil zip, and the lowest end of the zip tape has broken, which – again – makes starting the zip off very awkward.

But I acquired another jacket this winter, a short ladies’ ski jacket with a strong plastic zip. Hopefully it will see me through many winters to come, clumsy hands or no.

I’m actually using shoelaces as a personal indicator for how well the drugs are working.

Before the Rasagiline kicked in, I was ridiculously slow tying my shoelaces, and I ended buying some lock laces as a replacement (cheaper than new shoes, particularly as laced shoes have always fit me best). Lock laces are elastic laces with a spring-loaded ‘lock’; they are, it seems, much loved by runners. They worked well for me, even in my lightweight walking boots.

But then I replaced my boots. In the shop, and the first few times I wore them, it seemed easier to tie the laces. I don’t think that there was anything different about these new laces; I think it’s just that the Rasagiline was doing its job, and that tying laces had become more feasible.

So… when I start thinking about giving up on traditional laces again, that’s when I’ll know it’s time to move up a step on the medication.


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What’s Shakin’, by John Brissette

Book Review: John Brissette, What’s Shakin’ (An Insider’s Look at the Humorous Side of Parkinson’s Disease)

I came across this book by accident while investigating children’s books about Parkinson’s (it came up in a ‘Customers Who Bought This Item Also Bought…’ link on Amazon). This isn’t a children’s book; it’s a collection of humorous real life anecdotes relating to the author’s Parkinson’s. Brissette was diagnosed at the age of 45, and this book was written after ten years of dealing with the condition, during which time he seems to have been determined not to let Parkinson’s rule his life.

The book is a self-published work from America, available via iUniverse. I bought it via Amazon marketplace (the book was printed and bound on demand – the service was prompt and very satisfactory).

The book itself reads like a collection of newspaper columns, although I cannot imagine any newspaper that would be likely to tackle the topic of living with Parkinson’s on a regular basis. However, the introduction is written by a columnist from a Michigan newspaper.

There is no overriding narrative, but that is not necessarily a criticism; it just isn’t that sort of book. An attempt has been made to categorise the anecdotes according to symptoms and side effects (of medication); I found this superfluous, but it may be useful to some readers. As you might expect, some of the tales are more amusing than others, but the thing that gives them their real charm and readability is the voice of the author, whose character really shines through. Now, to my mind there were far too many stories about golf – but it’s evident that the fellow rather enjoys playing golf (and having close encounters with golf carts), so I suppose that’s just par for the course*.

While this may not be as brilliant as the reviews on Amazon would have you believe, it is a warm, positive book. The author’s can-do attitude and his belief that laughter makes life worth living makes up for the odd place where the humour misses or where the situation described is just too plain scary (golf carts and foolish DIY decisions loom large).

*I’m sorry, that pun just popped into my head and I couldn’t resist it.


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The peculiar land of Dystonia

Dystonia sounds like the name of a curious little East European country, doesn’t it? A bit like Elbonia in the Dilbert comic strips.

The first Elbonian strip

Or maybe it’s a fancy name for a hearing malfunction (as it happens, I am a little bit tone-deaf. Probably).

Sadly, neither of these is true.

Dystonia is:

“a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.”

(Oxford Dictionaries online)

Dystonia is a serious condition. It can occur as a symptom of another condition (such as Parkinson’s), in which case it is known as secondary dystonia, or as a neurological problem in its own right (primary dystonia). The Dystonia Society (UK) have a great deal of information on the subject.

Parkinson’s UK have an information sheet on dystonia, from which I learnt that it is more common amongst Young Onset Parkinson’s patients, that it usually occurs on the side of the body that other Parkinson’s symptoms are most pronounced, and that “in people with Parkinson’s it is most commonly seen in the feet”. Apparently, “spasms in the calf muscles can cause the toes to curl into a claw-like position”.

Which sounds familiar.

My interest in dystonia was prompted by a short discussion I had with my Parkinson’s nurse at a local Parkinson’s UK seminar in which she was discussing medication. I can’t quite remember why, but I mentioned my recent problem with toe curling and she said that it sounded like dystonia, and suggested that I look it up.

I think she’s right: it does seem an awful lot like dystonia.

She also said that it may be an indication that I am undermedicated. Of course, I can’t increase my dose of Rasagiline, so this means considering the next stage of medication – dopamine agonists or levadopa. That’s a decision that I freely admit to have been dreading.

However, I am due to see the podiatrist again next week, so I will see what she has to say on the subject. My physiotherapist talked about an orthotic device used to spread the toes, and a Parkinson’s UK information sheet on feet refers to a silicon “toe splint” or “toe prop” to remedy problems of this type. It certainly feels as if something like that might help.

At the moment, I’m putting weight on the tips of my toes that really didn’t ought to be there – especially uncomfortable when running – and my shoes are starting to rub. I discovered recently that the unnatural curl in my toes is uncomfortable during a long drive (I seem to use my toes to depress the clutch pedal). The constant muscular tension in the outer-underside of my foot causes an ache, too.

Read about the next visit to the podiatrist.

Read about high-heeled shoes and dystonia.


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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.