Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Don’t Stand So Close to Me

Relativity, by M. C. Escher. Lithograph, 1953.

I’ve been noticing, recently, that my spatial perception on the left (the side currently affected by Parkinson’s) is different to that on the right. I seem to need more space on the left, and I feel uncertain about where things are on that side – or, rather, where I am in relation to them. I often bump into obstructions such as door jambs or newel posts when passing them on my left (I’ve always been a bit clumsy, but I haven’t noticed the disparity between left and right before).

I feel uncomfortable when somebody is standing close to my left hand side, and I frequently ask people to move away before I feel able to perform an action that involves my left hand side. My children are very obliging in this, but my husband wanted to know why – and I couldn’t really explain. After I caught a mention of faulty spatial awareness in Parkinson’s (I’m not sure where; it may have been an incidental mention on a forum), I realised that there was something going on here, and that it might be worth investigating.

One of the first articles I found was entitled “Freezing in Parkinson’s May Be Linked to Perception of Space“. It reports on a 2009 Canadian study of how people behaved on approaching doorways of varying widths (narrow, normal and wide). Three groups of people were included in the study: people with Parkinson’s who experienced freezing episodes, People with Parkinson’s who did not experience freezing episodes, and a control group of people without Parkinson’s.

Unsurprisingly, the narrow doorway caused the most problems.

“While approaching the door, these patients [Parkinson’s patients experiencing freezing] took shorter steps, had more gait variability, and tended to widen their base of support.
[…]
Parkinson’s patients with no freezing episodes were also affected by the narrow doorway and tended to widen their base of support.”

 – Allison Gandey, Freezing in Parkinson’s May Be Linked to Perception of Space

The lead researcher, Quincy Almeida, PhD, (Wilfrid Laurier University in Waterloo, Ontario, Canada) suggested that there might be “a sensory-perceptual mechanism that contributes to — and potentially even causes — the observable freezing episodes identified clinically”.

“Probably the most surprising finding is that even Parkinson’s patients who do not have issues with freezing can be profoundly influenced by the perception of an upcoming narrow doorway,” Dr. Almeida said.

“In other, normal-sized doorways, the typical Parkinson’s patient behaves much more like a healthy older adult with no hint of a change in walking pattern prior to the doorway. Yet in the narrow doorway, there is a shift in behavior and the nonfreezer behaves more like a freezer.”

 – Allison Gandey, Freezing in Parkinson’s May Be Linked to Perception of Space

I find this very interesting. It recalls one or two occasions when I have got temporarily “stuck” in a confined space that I should have been perfectly capable of clambering out of; I started to understand what was meant when people talk about their feet feeling as if they are stuck to the floor.

Another study, this time made by researchers in Reading, England, looked into the perception of space in Parkinson’s patients. Two control groups were included: people with rheumatoid arthritis (who also experience motor difficulties, albeit with a physical cause), and an age-matched group with no motor disorder. The study was performed via a questionnaire, and the findings indicate that those with Parkinson’s:

… do notice significant changes in their perception of the world around them, reporting problems with judging distance and motion in the street and problems reaching for objects and moving through narrow spaces within the home.
[…]
The results of the study suggest visuospatial deficits in PD which may involve the parietal lobe and have implications for understanding the way in which PD patients interact with their environment.

So it seems that I’m not imagining the phenomenon, at the very least.

Related posts:

And just in case there are any disappointed Police fans out there, here is a link to the titular song.


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Australian Researchers’ Insight into Parkinsonian Freezing

Researchers at the University of Sydney have developed a novel way of investigating the phenomenon of “freezing” in Parkinson’s (a sudden, inexplicable cessation of movement that often occurs while walking). Basically, they have combined an MRI scanner with a pedal-operated walking simulator that can be used while lying down. This allows them to see what the brain is up to while a patient is “walking” through a virtual world that features corridors and doorways (narrow doorways often trigger freezing episodes).

The results of the study indicate that, while walking itself requires very little brain activity, as soon as freezing occurs, the brain goes into overdrive:

”… As soon as you freeze, it absolutely flips. The front area switches off and then all these other bits – the prefrontal cortex that is trying to reason and these bits at the back that deal with sensory input – all switch on.”

Dr Simon Lewis, director of the Parkinson’s Disease Research Clinic at the University of Sydney’s Brain and Mind Research Institute (BMRI), quoted in the Sydney Morning Herald

The researchers also hope that the virtual world can also be used to train the brain.

“It is possible that exercising in VR may offer a potential way of improving symptoms without the need for medications or surgery.”

Dr Simon Lewis, quoted in a University press release


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Michael J. Fox’s autobiographical writings – volumes 1 and 2

Michael J. Fox, “Lucky Man: A Memoir”, “Always Looking Up: The Adventures of an Incurable Optimist”

In the past, I was always quite ambivalent towards Michael J. Fox. He was just another actor; I remember seeing a number of his films – the Back to Future franchise, Teen Wolf, etc – and, later on, we watched Spin City with some enjoyment. But his boyish charms didn’t work their way under my skin (I remember making a facile judgement about his height).

Now, however, I have a great deal of respect for the man.

When I was first diagnosed with Young Onset Parkinson’s, I was reminded that Fox, too, had the condition – he was diagnosed at the tender age of 29, ten years younger than me. I knew that he’d written a book about it (“Lucky Man”), but I didn’t feel up to reading it straight away.

However, I can’t resist the idea of reading a book for long. I duly ordered a copy from Amazon and was about to add it to the pending pile when I decided to have a sneaky peak at the first few pages. I could barely put it down.

Fox adopts an engaging writing style, and he doesn’t allow himself to wallow in his misfortunes. “Lucky Man” tells the tale of how a self-proclaimed “army brat” from Canada made it big in Hollywood (at least in part by being the right face, in the right place, in the right time), and then what happened to his career – and his life – when he was diagnosed with a neurodegenerative disease. This isn’t, however, your usual celebrity biography (although I’m not sure how I know that, as I don’t make a habit of reading celebrity biographies; perhaps I should say that this isn’t what I imagine a standard celebrity biography to be).

Fox doesn’t dwell on the Hollywood successes; he skims through that era, peppering wry observations here and there, stopping to describe significant events such as his wedding to Family Ties co-star Tracy Pollan and the lengths that they went to to avoid the paparazzi. But the subject that this book revolves around is his diagnosis of Parkinson’s – his denial, his subsequent acceptance and the various coping mechanisms he adopted. Fox also documents  his partial retirement from acting and the beginnings of a new ‘career’ as an advocate and activist on behalf of other Parkinson’s patients.

“Always Looking Up” picks up pretty much where “Lucky Man” finishes. Fox talks about his last days as a full time actor, and about the genesis of his previous book. He talks about how the idea of a Foundation for Parkinson’s research evolved – how he was inspired by Lance Armstrong (Tour de France champion cyclist and cancer survivor) and Christopher Reeve (former actor, quadriplegic after a horse-riding accident).

Fox also touches base with Muhammad Ali (former boxer and fellow Parkinson’s patient) and has a run-in with Rush Limbaugh (radio talk show host), who accused Fox of faking or exaggerating his symptoms in a political television advertisement in which he (Fox) advocated funding for stem cell research. The latter incident, while plainly uncomfortable for Fox, seemed to work in Fox’s favour, particularly as Fox retained his dignity by refusing to enter the fray.

The political furore over stem cell research features quite heavily in this latter book. I must admit to having an imperfect grasp on the reasons for this; Fox’s explanations neatly cleared up my confusion.

Both of these books are a joy to read. I would recommend these books to anyone, with or without a connection to Parkinson’s or a penchant for Michael J. Fox. Fox reveals himself to be an entertaining writer; witty, thoughtful, warm and intelligent. Neither book is dull (even the passages about American sports and American politics – neither of which I understand as fully as Fox seemed to imagine his audience might – were interesting and, on occasion, informative – I was particularly tickled by the description of the “antiquated voting machines” used in his district of New York. A machine? For voting? I’ve ony come across the methodology that employs a pencil, a slip of paper and a box). My only caveat is that Fox occasionally comes across as being a bit too optimistic (is he too good to be true?), and that his slight “New Age” tendencies can be a bit wearing at times.

Of course, Michael J. Fox is a wealthy man, and with wealth comes privilege, and high quality health care.  He does not have to put himself in the public eye, but I, for one am glad that he has done so, and continues to do so. His fundraising and political clout is valuable for funding research, and his visibility is a constant boost to public awareness of Parkinson’s, with the bonus that it highlights the fact that younger people can get the condition, too.

Fox has since written a third memoir. This volume, “A Funny Thing Happened on the Way to the Future: Twists and Turns and Lessons Learned” seems to be a collection of anecdotes rather than a conventional autobiographical tome. Of course, I haven’t actually read it, yet, so I can’t tell you any more about it…


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Oxford University Stem Cell “Breakthrough” in Parkinson’s Research

Dopamine neurons (in green) grown using stem cell technology. (c) Oxford University

A BBC video article alerted me to a new “breakthrough” in attempts to grow nerve cells from stem cells (derived, in this case, from skin samples). Researchers at Oxford University took skin samples from people with Parkinson’s disease and used stem cell technology to create “nerve cells that are just like those of the people with Parkinson’s” in the lab.

This is a breakthrough in that it allows the Parkinsonian nerve cells to be studied in an attempt to discover what makes the dopamine neurons die off in Parkinson’s Disease.

‘We can’t take bits of people’s brains when they are alive, of course,’ says Dr Richard Wade-Martins of the Oxford Parkinson’s Disease Centre, who led the work. ‘So we never have been able to study dopamine neurons from a patient.’

News article from Oxford University

This is the first stage in a long-term study funded by Parkinson’s UK intended to investigate “all the biological processes that go wrong in Parkinson’s, giving greater insight into the causes of the disease.”

It is not the much vaunted stem cell therapy, but it is, potentially, a step towards some type of therapy – to be determined by the results of the ongoing study.


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New York Times on “Marching Through Life with Parkinson’s”

The New York Times has an article discussing Parkinson’s Disease and a few strands of research:

Marching Through Life With Parkinson’s

Marching Through Life With Parkinson’s

The article, written by Jane E. Brody, talks about how patients cope with the condition, including touching upon the subject of medication and – with a little more emphasis – physical exercise. It includes Young Onset patients (in fact, it begins with one), which makes a pleasant change. Then the subject of research is broached, and we get reference to the Michael J. Fox Foundation (whose post on Facebook alerted me to the NY Times article, and who fund a lot of research into Parkinson’s). The ongoing development of a biomarker for Parkinson’s progression is covered, as is a form of radical gene therapy. There isn’t room in this type of article for a general survey of current research, but the two elements selected seem to represent the breadth of what is being studied.

It’s a nice piece of journalism, and it’s good to see the condition covered in such a high profile newspaper.


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Jonathan Franzen, “The Corrections”

The back of my paperback copy of this novel has a quote on it, from a review in Elle. Will Blyth describes the book as “the first great American novel of the twenty-first century.” I must confess that that one phrase (“great American novel”) very nearly put me off. Other novels that I have read that have been lumbered with that description have not been to my tastes. Quite often unbearably pretentious, excessively intellectual – basically, trying too hard. I usually find the characters (who are often dissolute, lecherous types) difficult to identify with. I won’t name names – in part because I have tried to excise the memory of reading such books from my mind.

Fortunately, Franzen’s “The Corrections” isn’t like that. It’s an engaging read, intelligent and warm. The characters are not universally appealing, it is true – but they do seem real, and each of the main characters is given time to develop into a person you can feel for.

“The Corrections” is a book about a the various dysfunctional members of a family. The children are al adults and have all left home. The parents remain in the family home.

The father, Alfred is, in many ways, the central character despite being the one who remains the most aloof. His distance is part of his character – he has always been very ‘correct’ in his opinions and his behaviour, and seems to find it hard to express emotions. One might say he is repressed. His family seem to think he is depressed. Now an old man, he has Parkinson’s.

Enid, his wife, is a disappointed woman. Her husband disappoints her by his distance and his inaction. She tries very hard not to let her children disappoint her, to the point of telling herself untruths about their lives. She yearns for happier days when the family were all together. As her husband’s condition deteriorates, she sends out the call for one last family Christmas.

But each child has their own reasons for wanting to avoid the parental home.

Gary, the eldest, is – on the face of it – the most successful. He has a good job in the banking sector, a wife and three children. But his wife – who seems a little unstable – does not get on with her in-laws, and refuses point blank to go to their house for Christmas. Gary himself is struggling with his own mental health – might he, as his wife suggests, be depressed?

Chip, the intellectual with an overt “alternative” lifestyle (basically, he doesn’t have a steady job), has financial concerns. And his girlfriend has just left him. Then he is made an unconventional but lucrative offer that involves overseas travel…

Denise, the youngest, is a successful and highly regarded chef (this is a source of pride to her mother, but Denise’s recent divorce and lack of children causes disappointment). But she is also undergoing a sort of identity crisis, which ultimately results in her losing her job.

Taking in the American midwest, Philadelphia, New York, a sea cruise and the perils of Lithuania, the story ricochets between the family members as we learn more about their pasts and their present situations. There’s a sub-plot involving a hyped fictional cure for Parkinson’s, and a few twists that I, for one, didn’t expect.

Alfred, the character with Parkinson’s, is, I think,  a complex fellow with hidden depths. We don’t really get to explore these, but they are hinted at. His supposed depression predates the onset of his Parkinson’s (not, in itself, unheard of – not least because dopamine losses typically begin up to ten years before external symptoms appear). He may not be the most attractive character I’ve ever come across, but – to borrow a phrase from Burns – a man’s a man for a’ that, by which I mean to say that he is a human being, and that Franzen manages to portray him as such (Burns’ poem is  proto-socialist recognition of the humanity of the poor, so it’s not quite appropriate here; nonetheless, the phrase insinuated itself into my review and I couldn’t resist it). He is, by turns, stiffly dignified, intensely focused, desperate and confused, among other states. And his family members revolve around him.

Franzen seems to be aware of many of the issues surrounding Parkinson’s – either he’s done his research or he has encountered the condition in his personal life. This isn’t a book about Parkinson’s – it’s a book about human relationships, and as such it is a book with wide appeal – but it is a book in which Parkinson’s features heavily.


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Services for People with Parkinson’s disease in the South Region

Whew! What a long post title – but it’s the official name of the meeting. I know; I have the agenda in front of me.

I was invited along to this meeting held by Parkinson’s UK in Reading, last Wednesday evening. It was part of a larger event (a national board meeting held, this year, in the South region); this was the introductory meeting, to which a number of People with Parkinson’s were invited. I was one of them. I’m aware that I was part of a token presence – it is, after all, impossible to invite everyone – and I suspect that one of the reasons I was invited was to help represent the younger Parkie. But I think we were positive sorts of tokens.

To be honest, it was kind of nice to get out of the house in the evening and focus on being with other adults, although I must confess that, when asked my job title, I said “Mum” (concise and true).  I suspect that my age and appearance may have implied that I may have had a professional, as opposed to personal, interest.

We were treated to a lovely buffet, during which I met some of the charity’s directors and staff, and then we had a series of talks designed to illustrate the current level of services and the imagined future. Inevitable concern was expressed regarding potential NHS cuts – it seems that Parkinson’s, as a long term condition that rarely presents an all-out emergency, may not be top of the NHS’s list of priorities.

Finally, those of us present who suffer from Parkinson’s were asked to relate our experiences with various services received. Naturally, my tale was quickly told – my diagnosis is, after all, quite recent – and was generally satisfactory (with the possible exception of my consultant neglecting to mention the availability of a Parkinson’s Nurse; this was, fortunately, quickly remedied by the physiotherapist whom I requested access to). Most of the services I have made use of thus far involve consultation and education – some of the latter provided by the NHS, some by the charity Parkinson’s UK. It seems to me that there is a willingness for the two groups to work together.

In fact, cohesion of service was one aspect that was identified as in need of improvement. GP’s surgeries, assorted hospital departments, sometimes multiple hospitals, physiotherapists and specialist nurses – all can be involved in managing one person’s Parkinson’s and quality of life. And then, of course, there are the unpaid carers

All in all, it was a positive meeting. It seemed like there was a lot of thought being expended on the future of services in the UK for people with Parkinson’s, and that the will was there to continue improving those services.