Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Relaxation Exercise for the Hands

This is a simple exercise that I learnt during the physiotherapy class in which we attempted visualisation.

(c) ZalamandaIt’s very easy. It probably doesn’t need illustrations, but I’ve done some anyhow.

Make you hands into fists – as tight as you can.

Then release the fists and stretch out the fingers to make a star shape – as wide as possible.

A few repetitions should release some of the tension that has built up in the hands and forearms (my left hand gets very tight at times; it’s uncomfortable, verging on painful) and may also restore some of the ‘lost’ function for a short time.

I find it slightly easier to do this exercise with both hands simultaneously; the able right hand ‘leads’ the left. It certainly loosens the affected hand up, and it does seem to help with functionality. I hardly lost any ‘A’s on that last bit of typing!

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Incidentally, even with a half-frozen left hand, the darn thing doesn’t stay properly still to be drawn! I had to reposition it (a trivial task) several times for each drawing.


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Stomach Ulcer Bacteria Linked to Parkinson’s

Helicobacter pylori, image linked to via the BBC

A recent study, reported on the BBC Web site, has linked the bacteria that cause stomach ulcers to Parkinson’s Disease.

To my mind, it’s not a very conclusive finding. The researchers, based in Louisiana, gave mice large doses of the bacteria Helicobacter pylori and the “middle-aged” mice went on to develop “Parkinson’s like symptoms”, while younger mice did not. The researchers have also identified a chemical route by which H. pylori can cause loss of neurons.

  • The abstract for this study can be read here. It gives additional details on the methods used in the mouse experiments.

Now, humans are the only animals that get Parkinson’s – so any study using mice cannot be conclusive by itself. There are, of course, several causes in humans of “Parkinson’s like symptoms” that are not, actually, Parkinson’s Disease. In fact, the researchers themselves cite one such example; H. pylori is, apparently, able to generate a neurotoxic chemical “almost identical to one found in seeds from the cycad plant, which had been shown to trigger a Parkinson’s-like disease among people in Guam.”

I would also note that, as I understand it, current thinking is that there are likely to be several triggers that are suspected of causing Parkinson’s. Head trauma is one, inflammation another, and it is likely that some cases may be genetic. Environmental factors are also suspected, notably pesticides (one study based on farming communities in California’s central valley is particularly well known for promoting this link).

To mitigate my scepticism, it should be noted that a correlation between Parkinson’s and stomach ulcers has been observed in the past:

“Physicians have noted a correlation between stomach ulcers and Parkinson’s disease as far back as the 1960s, before it was even known that H. pylori was the cause of ulcers. More recently, a number of studies found that people with Parkinson’s disease were more likely to be infected with the bacterium, and that Parkinson’s patients who were treated and cured of infection showed slight improvement compared to controls that continued to deteriorate.”

Science Daily, “Ulcer Bacteria May Contribute to Development of Parkinson’s Disease”

However, Dr Kieran Breen, director of research at Parkinson’s UK, is quoted in the BBC article as saying that “no strong evidence that people who have H. pylori in their gut are actually more likely to develop Parkinson’s.” And, to be honest, I have a lot of faith in the people at Parkinson’s UK. They have a great deal of experience and knowledge on the topic.

Personally, I have never had a stomach ulcer. I have never experienced any notable head trauma. I do not believe that I have had a large exposure to pesticides. There is no history of Parkinson’s in my family. My health has, in general, always been good; I have certainly not had any extended periods of illness. The only factor I have come across so far that seems in any way relevant to my own case is the very tentative link that was made with hay fever.

As a Young Onset Parkie, I feel uncomfortable about the noted differences between the young and the “aged” mice and the way in which this is held up as being further evidence to support the link with Parkinson’s. Parkinson’s is not exclusive to older people, and careless reporting like this will only reinforce the public’s perception that it is a disease of old age.


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Relaxation via Visualisation: an anecdote

Relaxation techniques can be very useful to people with Parkinson’s. It makes sense: if your muscles tense up involuntarily, it should be possible to relax them deliberately and to attempt to stop it happening too often.

On Friday, I attended a class organised by my enterprising physiotherapist, one of a series designed for people with a recent diagnosis of Parkinson’s. The attendees are, naturally, a mixed bunch, but I am, at 40, the youngest there; I think I may also be the closest to the beginning of my Parkinson’s journey. I was feeling a bit tentative this week, because my overall fitness has been impaired by a chest infection that I’m still getting over. I’d managed, earlier, to participate in my yoga class that falls, coincidentally, just before the physio class (it’s a bit tight getting from one to the other, but it just about works). I thought I might have to sit out anything too energetic, but, fortunately, this week’s theme was relaxation.

We went through  few techniques familiar to me from my yoga classes, notably breathing and body awareness. We were encouraged to adopt the position known, in yoga, as the corpse pose (Savasana). This is a very simple pose, being essentially lying flat on your back on the floor with your arms and legs flopped out, palms up (if possible – my left wrist is stiff but I can just about make it turn enough). This pose is particularly advantageous because it also helps promote good posture – something else that becomes an issue when you have Parkinson’s.

Line drawing (made without a model) of the "corpse" relaxation pose. (C) Zalamanda

And then we tried a visualisation exercise, which entails imagining yourself in a relaxing place.

One of the most common relaxing places seems to be the beach. Off we went. A relaxation CD was playing pleasing wave noises. We were encouraged to think of lying on the beach, the waves lapping at the shore.

I think my imagination is a bit overactive.

Anyway, I started worrying about suntan lotion and wondering where my book was. Then palm trees got mentioned and suddenly we weren’t in Cornwall anymore. I decided it was too hot for me (and that I’d get sunburnt soon) and zoned out of the visualisation (by this time, some annoying synthesiser music had appeared alongside the waves on the CD, so I tried to block that out, too) and just concentrated on breathing and body awareness (which included tensing and relaxing groups of muscles).

I’m not saying that visualisation doesn’t work for me. I think I could build my own, and have fun doing it (at the moment, I’m favouring a moorland scene with a stream burbling nearby). Probably my biggest problem was that I’m not much of  beach person – or rather, that I’m not a sun worshipper. I like to walk along beaches, to build sandcastles with the kids and maybe read a book if I’m feeling lazy, but I’ve never been one for sunbathing.

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Interestingly, in the preceding yoga class, we’d done a similar exercise albeit without the visualisation. The doors were open and we could hear the birds singing outside… lovely. Then a Chinook came over – but, somehow, it didn’t quite spoil it for me. The birds were still singing after the helicopter had gone.


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Rohinton Mistry, “Family Matters”

Rohinton Mistry is one of the loose group of authors who write “Indian English Literature” – that is, they are of Indian descent, but are writing – typically about post-colonial India – in English. Mistry himself was born in India in 1952 but has lived in Canada since 1975.

One of the appeals to an Anglo-Saxon such as myself (who has not visited the Indian sub-continent) of this type of literature is the faint hint of exotica about it. Here are stories from the East, written by insiders, in impeccable English. But behind the exotic, we find the universal: such tales are, first and foremost, about human nature, and how people react to situations that may be – to one extent or another – out of the ordinary.

Nariman Vakeel is a distinguished 79-year-old with an academic career in English Literature (and a complicated romantic history) behind him. Despite his medical problems – he has Parkinson’s Disease and osteoporosis – he insists (quite rightly) on a measure of independence, and takes a daily walk. Unfortunately, it is on one of thees walks that he falls and breaks an ankle, which results in complications and an extended period of bed rest.His stepdaughter and stepson, with whom he lives in the family home, find it difficult to cope his care, and, through some rather devious machinations, manage to offload him on to their half-sister, Roxana – Nariman’s own daughter – who lives in a smaller flat with her young family. Roxana is happy to care for her father, but his presence causes all sorts of problems, not least financial ones.

Nariman may be the central figure, but the focus of the story moves away from him as an individual as the story progresses and other characters come to the fore, notably Roxana’s husband, Yezad, whose financial and spiritual troubles seem inextricably linked. However much the older Nariman fades into the background, however, his past is a recurring thread and is slowly revealed – to the reader and to his youngest grandson, Jehangir – as the novel progresses . A romantic relationship forbidden on religious grounds refuses to disappear, and has catastrophic results on his family, with repercussions that extend into the present day of the story.

I thoroughly enjoyed this novel. The multiple characters are nicely drawn and the tale rolls along nicely, keeping the reader firmly involved. Mistry’s prose is unobtrusively elegant and is a pleasure to read. The twin themes of family relations and religion (a potentially complicated issue in multicultural India) are loosely entwined and combine to drive the story along.

The character of Nariman is dignified and, largely, well handled. I was slightly disappointed by the way that his strong presence diminished to, at times, little more than a problem to be solved (it might have been nice to have had an insight into how he – bed-ridden and losing his ability to communicate – felt), but the feelings of the other characters towards him as a person, even as he disappears into his illness, go some way towards making up for this.


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Quality of Life in Parkinson’s Compared According to Age of Onset

A recent study (published in the upcoming issue of Movement Disorders; there is an online preview here, but payment is required to view the full article) looked at quality of life in people with Parkinson’s, with particular attention paid to the age of onset – so, they compared the quality of life of people with Young Onset Parkinson’s with that of people who developed Parkinson’s at a later stage.

From the abstract, the conclusions don’t look all that rosy for those of us with Young Onset Parkinson’s.

It seems that people with Young Onset Parkinson’s, in comparison to older patients:

  • have a lower quality of life
  • are at increased risk of “poor emotional well-being independent of depression status”

However, both groups (Young Onset and older Parkinsonians) are equally at risk of “depression and excessive daytime sleepiness.” I have, however, come across the suggestion elsewhere that younger people with Parkinson’s are more likely to suffer from depression than older patients.

Depression is a symptom of Parkinson’s, and is not merely associated with the dreadful prospect of knowing you have Parkinson’s. I am fortunate enough not to have encountered Parkinson’s-related depression, but I understand that depression is most likely to occur when you have higher expectations; younger people, who may be trying to juggle raising a family and holding down a job, will expect more from themselves than those whose families are grown and who are retired or approaching retirement.

The last sentence of the abstract emphasises the need for diagnosis and treatment of depression in Young Onset Parkinson’s.

Citation: Knipe, M. D. W., Wickremaratchi, M. M., Wyatt-Haines, E., Morris, H. R. and Ben-Shlomo, Y. (2011), Quality of life in young- compared with late-onset Parkinson’s disease. Movement Disorders, 26: n/a. doi: 10.1002/mds.23763


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Link Proven between Immune System and Parkinson’s

Payment is required to read the article in fullA new study, published by a group from the University of Florida in Nature Neuroscience on Monday (16 May 2011), demonstrates how chronic inflammation (caused, for example, by an immune reaction to influenza or other infections – also, one imagines, by hayfever, which is essentially an overreaction of the immune system to pollen) can lead to the deterioration of a particular area of the brain: the nigrostriatal tract, part of the basal ganglia motor loop. This is the area where neuronal loss is known to cause Parkinson’s.

In short, a direct link has been found between chronic inflammation of the brain and Parkinson’s Disease. Past research has suggested a link, but the nature of the link has not previously been established.

Dr. Todd Golde of the University of Florida says:

“Our data show that when a certain master protein that stimulates the immune system and antiviral response is expressed at high levels, it causes neuronal loss primarily in the nigrostriatal tract, thereby creating vulnerability to Parkinson’s and similar movement disorders.”

This “master protein”, known as interferon gamma, is an important regulatory part of the human immune system. In the Florida study, high levels of interferon gamma caused widespread brain inflammation, but only the nigrostriatal tract degenerated as a result.

From what I read in the University of Florida’s news article, it seems that this was an accidental finding; the researchers “had initially set out to understand interferon gamma’s role in Alzheimer’s disease and dementia”.

The mode of study is unclear in the article, and I have, as yet, been unable to determine what type of study was made; reference is made to a “model” of the brain, which initially made me think of computer modelling, but there is nothing to indicate that this is a theoretical finding. Other options include experiments involving tissues (which I think would be too limited for such a conclusion) or animal models. The latter is, I think, most likely. As the source of this news is the University that published the paper, it is possible that the writer was being delicate and deliberately omitting mention of animal experiments.


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Cecil Todes, “Shadow Over My Brain”

AmazonCecil Todes (1931-2008), a leading child psychiatrist, was 39 when he was diagnosed with Parkinson’s. One of the first indications of his condition was the apparent malfunction of his cherished automatic watch (this sounded very familiar); he sent it back to the manufacturer twice before settling on the solution of wearing on his right wrist, where it worked perfectly. Much as in my own case, this happened a few years before Parkinson’s was diagnosed and Todes eventually made the same realisation that I did: there was nothing wrong with the watch; it was the arm that was at fault, lacking the requisite amount of movement to keep the watch going.

Over the next 20 years – the period covered by this book – Todes sought a cure for Parkinson’s. He used his medical connections to locate new treatments and endeavoured to sample many at an early stage of their development. His attempts to cure himself often seem desperate; how much of this is an understandable desire to be rid of Parkinsonism, and how much is due to an expectation that medical science should be able to cure it is unclear.

Todes also sought a reason for his affliction. In Shadow Over My Brain, he attempts to tie the condition to personality, specifically to early loss (his own mother died just before his seventh birthday), with an underlying genetic predisposition. This would be a psychosomatic cause for Parkinson’s (“psych” = mind, “soma” = body; psychosomatic, in this context, means that the mind is contributing to an illness of the body).

Writing about his own experiences does not seem to have come easily to Todes. His prose is occasionally a little stiff, but there is never any cause to doubt what he says. He is always frank and believable. His experiences offer an insight into the nebulous area where a doctor is also a patient, and so into the doctor-patient relationship in general. Do doctors make good patients? Is it easy for other doctors to treat a doctor-as-patient? Todes kept working for many years after his diagnosis; it seems that other doctors found it difficult to relate to him in his role of patient-as-doctor.

Todes does make one point that stands out in my mind. He claims that working (in his case as a doctor) helped him face and cope with his Parkinsonism. I would be inclined to agree with this. My limited experience suggests that keeping oneself engaged does help enormously.

This is, I think, an important book. (Oliver Sacks, who provides the effusive introduction and who also mentions Todes in the preamble to Awakenings, also thinks it is an important book.) Todes’ clinical experience leads him to describe all aspects of his condition as they occur in a dry, succinct manner; he does not stint and he does not bury then under unnecessary detail. His courage in facing all that Parkinson’s has thrown at him and in attempting novel cures, is vast. Although Todes does touch upon the subject of depression (a common non-motor symptom in Parkinson’s Disease), the book is not, on the whole, depressing; Todes contrives to inject a genuine message of hope.

The book itself is not long (my hardback edition runs to 158 pages excluding the bibliography) and it has a single, simple narrative.  It is not, however, an easy read; there is some thinking to do long the way, and there are one or two medical concepts to understand (although this is emphatically not a scientific discourse; it is a personal story).

Shadow Over My Brain: A Battle Against Parkinson’s Disease is out of print, but second hand copies seem to be readily available at Amazon and elsewhere.