Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

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The Parkinson’s UK Brain Bank

I recently attended a seminar on current research into Parkinson’s. It was organised by Parkinson’s UK (the support and research charity) as part of a series of local seminars aimed at people newly diagnosed with Parkinson’s, and was presented by one of Parkinson’s UK’s research team. It was very, very interesting; Dr Lubna Arif is an engaging speaker, and she managed to present an overview of the research that the charity is currently involved with and to summarise how the charity supports research.

Dr David Dexter

Dr David Dexter, Scientific Director, Parkinson's UK Brain Bank

One of the many things that she spoke about was the Parkinson’s UK Brain Bank. This is not (as I initially guessed) a group of highly intelligent people doing a lot of serious thinking about research into Parkinson’s. It is something a little more prosaic: a ‘bank’ of brain samples that have been donated after death.

The Parkinson’s UK Brain Bank collect and preserve the brains of people who have signed up to donate their brain for research purposes. The Brain Bank supplies researchers with the samples that they require to further their research into Parkinson’s.

As well as collecting brains affected by Parkinson’s, the team also require brains from people without Parkinsonian symptoms. In fact, there is a shortage of non-Parkinson’s brains in the bank.

I’ve requested my information pack (the first stage in signing up to become a Brain Donor) – will you?

Become a Brain Donor


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Hay Fever and Parkinson’s

Hay fever - pencil doodleI get hay fever. I’ve had it since before I went to school – from around the age of four – and I still get it now, at around the age of 40. It’s relatively unusual to start getting hay fever that early (most affected people start reacting during adolescence), but my son also started suffering from hay fever at a similar age.

What has hay fever got to do with Parkinson’s? Well, it turns out that – according to an article published in New Scientist in 2006 (free to view) – there is a link between allergic rhinitis (the medical term for hay fever and other allergies that affect the nose) and Parkinson’s. It’s not a conclusive link – there is no reason to suspect that you will get Parkinson’s just because you have (or had) hay fever – but, apparently Parkinson’s sufferers are almost 3 times more likely to have had hay fever than other people:

They [researchers at the Mayo Clinic in Rochester, Minnesota, US] studied 196 people with Parkinson’s disease and 196 others matched for age and gender. A comparison of the two groups revealed that those with Parkinson’s were 2.9 times more likely to have suffered rhinitis earlier in their lives.

Michael Day, ‘Link between Parkinson’s and rhinitis revealed’, New Scientist, 08 August 2006

The original abstract for the research paper can be seen here.

The link may be due to the inflammatory nature of both conditions and the immune response caused by hay fever:

“The inflammation produced may release certain chemicals in the brain and inadvertently kill brain cells, as we see in Parkinson’s,” [clinical neurologist James] Bower says.


And to think that I thought my hay fever was essentially harmless!


Gut Reaction: A Possible Link Between the Gut and Parkinson’s

It’s absolutely ages since I bought New Scientist. Don’t get me wrong – I love reading it; it’s my favourite popular science magazine – but sometimes there just isn’t time for magazines. Today, however, in the newsagent, the cover caught my eye, and, because I touched upon quantum theory at university, I decided to treat myself.

I got home and opened the magazine up. And there it was, the first featured item on the contents page:

The unlikeliest transplant*
Replacing faecal matter could ease Parkinson’s symptoms
(*You need a subscription to read online).

I turned to page 8 and read:

A few years ago, John Gillies had trouble picking up his grandchild. He would stand frozen, waiting for his Parkinson’s disease to relinquish its hold and allow him to move. Then in May 2008, Gillies was given antibiotics to treat constipation, and astonishingly his Parkinson’s symptoms abated. What on earth was going on?

Anil Ananthaswamy, ‘Bugs from your gut to mine’, New Scientist, 22 January 2011

Subscription required to read New Scientist article on-line.A nice anecdote, and one to inspire hope. Researchers are investigating the link between bacteria in the gut and a number of disorders – in addition to Parkinson’s, diabetes, multiple sclerosis, chronic fatigue syndrome and rheumatoid arthritis are also mentioned.

The theory is that gut bacteria may enter the central nervous system via the vagus nerve, which runs from the colon, small intestine and stomach to the brain. An infection of the colon may release antigens into the bloodstream and so trigger an autoimmune response. Alleviating the colon infection may have unexpected, beneficial, effects elsewhere.

However, unless the antigen is completely cleared from the gut (this is where the idea of a faecal transplant is introduced – effectively adding ‘good’ bacteria to the colon), the immune response is relentless and will manifest as an autoimmune disease.

The idea that Parkinson’s is an autoimmune disease has been suggested by recent research. I’m not sure how well established this theory is, though, but it seems to have given researchers several avenues to investigate.

The use of gut flora to treat various conditions by means of transplant seems to be a relatively new idea that has yet to be developed into anything that can be used on a large scale. As one researcher quoted in the article says, “You don’t want to treat one disease and introduce another” (Arthur Kaser, University of Cambridge, UK).

It’s great to see these things being reported in the (almost) mainstream press, and it was especially gratifying to find such an article in the first copy of New Scientist that I’ve picked up in months.

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Return to the Skeleto-Muscular Podiatrist

Today I went back to see the podiatrist.

After I received my temporary orthotic insoles, I wore them all the time – for about four days. By then, my right knee was complaining – a lot. So I guessed that the insoles might be the cause and stopped wearing them for a week (which coincided with some snow). My knee felt better, but didn’t stop hurting altogether. I tried the insoles again (building up from ‘occasionally’ to ‘most of the time’) and it didn’t get any worse, but it didn’t go away, either. When I spoke to my physio last week, she confirmed that orthotic insoles can cause knee pain, and offered a ‘knee assessment’ when I next see her.

After I told the podiatrist this, she told me not to use the orthotic insoles any more. My gait abnormality is relatively minor (and, I suspect, has been present for many years without causing a problem); it would probably have never come to light if my physio hadn’t spotted it. We agreed that the pain I’ve been feeling in the side of my foot is most likely to be due to the Parkinsonian muscular tension (making my toes curl).


Hard Sell: The Evolution of a Viagra Salesman


Buy at AmazonHard Sell: The Evolution of a Viagra Salesman is a book by Jamie Reidy. It is a factual account of his time as a pharmaceutical representative working for Pfizer, and has been made into a film, Love and Other Drugs, starring Jake Gyllenhaal and Anne Hathaway.

I haven’t seen the film, but I did stumble upon a review of it, and subsequently read a plot synopsis (IMdB has a full synopsis, complete with spoilers) which described how Reidy gets romantically involved with Maggie, a woman suffering from Young Onset Parkinson’s. My interest was piqued.

But I don’t get out to the cinema very often (I have young children and no established baby sitter), so I thought I’d check out the book it was based on. I usually prefer the book to the film, anyhow – and, besides, the film has had some truly bad reviews. I found a reasonably priced copy of the book on Amazon and read it almost as soon as it arrived.

Maggie isn’t in the book. The book doesn’t mention anyone with Parkinson’s, Young Onset or otherwise.

Are you still reading? Well, I was. I was looking out for Maggie – surely the movie studio wouldn’t just invent such a big part of the story? (Answer: yes, they would; it seems that the book and the film bear only a superficial resemblance to one another.) But I was also quite enjoying the book. Reidy is a likeably intelligent slacker who coasts through college and army life. He quits the army and returns home, much to his parents’ chagrin. The job of pharmaceutical rep. at Pfizer lands in his lap and he accepts it. He soon works out how to play the system, doing the bare minimum of work, and somehow ends up being ‘promoted’ to the urology team in California, just in time for the launch of Viagra.

The author comes across as a pretty standard sort of guy – I think I’ve met his English counterparts a fair few times – he’s a lazy, competitive underachiever mostly interested in beer, football and sex, although faintly embarrassed by the latter. There is no romance in the book; a girlfriend is left behind in Chicago, and that’s the last we hear of her, and while there are intimations that Jamie’s got some sort of love life, the girls aren’t mentioned for the simple reason that they have nothing to do with the subject of the book: Jamie’s rather unspectacular career.

The book is fast-paced and well written, with a wry, self-deprecating wit. It throws a little light on many things: the US medical system, big pharma’s relationship to the American medical system, and, of course, the minutiae of American society in general. But it doesn’t pause too long, lest the reader get bored. It is, in truth, a fairly superficial book, written for comedic effect rather than deep insight. In the ‘Epilogue, continued’, added after the book was initially published, Reidy admits that he failed to properly reveal his ‘hopes, dreams and fears’.

But it’s still an entertaining – and, to a certain extent, enlightening – read.

Buy Hard Sell at
(Use this link and I will get a small percentage commission)


Running with Parkinson’s

Hi-Tech Running Shoes with Lock Laces

My running shoes

I have to say right now that I’m a rubbish runner. Always was, always will be (I usually say that it’s because my legs are too long and I’m not coordinated enough*). But it’s a cheap way of trying to get fit, and, as a bonus, there’s no bulky equipment to clog up your home. All you really need is a half decent pair of shoes and somewhere out of doors to run.

And a reason to run.

I’ve got one of those. I feel more inclined to run now than I ever have before (I’ve tried ‘running’ as an activity at least twice in the past, but it never lasted long). But I feel very disinclined to ‘go for a run’ when I could be doing something more interesting or more useful instead. So I’m trying to fit it in to my day by letting the kids use their scooters and running after them (only works when it’s not wet; no scooters on wet pavements), and by running home after dropping the kids off (only works when it’s not icy, but we’re having mild weather at the moment, so I don’t have that excuse now) – and, of course, back again. It’s not far – a brisk five minute walk – but I’m not up to running all the way yet. More practice, I suppose.


The point is that, while I can run (inefficiently, inelegantly, and quite slowly, but that’s how I’ve always run) with Parkinson’s at present, there are a couple of things that I have noticed.

One of them is positive: when I’m running, my arms do that pumping thing – not the swing that happens when you walk (and which I have lost in my left arm), but a more vigorous action.¬† And it works with both arms. Apparently this is because running is a different mode to walking and is governed differently by the brain.

The other is a bit more worrying. Last week, while running home from school in my ‘normal’ boots (a pair of lightweight walking boots – yes, I do have running shoes, but they are not waterproof and it was wet and I probably forgot about them anyhow), the toes on the outside of my left foot encountered a strange popping sensation. It felt a bit like standing on bubblewrap. It was puzzling, distracting, and decidedly uncomfortable. I thought it might be the boots – they’re relatively new, and a bit more generous in the toe region than some shoes I own – and resolved to try a different pair of shoes. As it happens, the problem only seemed to occur with the new boots. Blame the boots, I thought, trying very hard not to write off ¬£40 worth of footwear. Maybe I need a thicker insole? Maybe I shouldn’t run in them?

Maybe both. But I think I know what the problem is, and it’s nothing to do with the boots. It’s my toes, curling up inside the boots, making the impact jolly uncomfortable. I’m worried that I could break my toes.


*Alternatively, it has been suggested to me that my poor running may be due to a slight tendency towards being knock-kneed. I don’t think that this is anything to do with Parkinson’s. It also doesn’t cause me any trouble. However, I suspect that the true reason for my poor running is that I’m not very interested in running!

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Parkinson Society Canada’s Awareness Campaign

A striking set of images and an accompanying video comprise the Parkinson Society Canada’s current awareness campaign, which illustrates the idea that Parkinson’s causes your body to turn against you.

In the still images, people are restrained by numerous hands, preventing them from doing simple, day to day tasks. The restraining hands bear a striking resemblance to their own hands.

(Click on the images to see the full size PDFs)

An unreasonable part of me resents the fact that the individuals shown all seem to be older people, so reinforcing the idea that Parkinson’s does not affect younger people. Of course, there are only three images, and most sufferers are older.

However, it does seem to represent an element of how it feels to be failed by your own body in this way (my own, mild, symptoms, are nothing compared to the sort of thing illustrated, but I can definitely identify with the idea of restraint and involuntary positioning). It also completely ignores tremors – the most visible, and perhaps best known aspect of the condition – which I think is good.

In the video, below, a sort of evil twin violently attacks a man as he attempts to answer his telephone:

This chap doesn’t look so elderly, it has to be said (perhaps a youngish actor was required for those fight sequences?). Thankfully, I’ve never experienced anything like that – the worst I get is general slowness and clumsiness, with the very occasional, and very short term, temporary paralysis. But I think I can see what they are getting at – convulsions and awkwardness of movement, basically fighting against your own body’s reluctance to do what you know it can do…