Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Is Parkinson’s Hereditary? (VPS35 Genetic Mutation Identified)

DNA double helix - animated gif borrowed from Wikipedia

A quick answer to the question posed in the title of this post – is Parkinson’s hereditary?  – is: sometimes.

Basically, some instances of Parkinson’s seem to be hereditary, while others (the majority) don’t. In my case, there are no past incidences of Parkinson’s in my family that we know of, and so my Parkinson’s has been labelled “idiopathic”, which means that they don’t know what caused it.

But in other cases – such as the “large Swiss family with a history of Parkinson’s disease” who were the focus of recent research reported in this Psych Central article – a genetic marker has been identified.

As Zbigniew Wszolek, M.D., one of the researchers responsible for the study of the Swiss family, says:

“Every new gene we discover for Parkinson’s disease opens up new ways to understand this complex disease, as well as potential ways of clinically managing it.”

As I understand it, the genetic causes of Parkinson’s are specific mutations in certain genes. This comes across quite well in another news article describing the same discovery, “… one of the three genes which cause late-onset Parkinson’s, at an age of about 60 years”, according to Alexander Zimprich from the Department of Clinical Neurology at the Medical University of Vienna. (A total of six genes currently identified is cited in the article; three, including this one, are “dominant”.)

The study looked at seven members of one family who have Parkinson’s:

The team discovered more than 20,000 variants of the gene in each patient. [… ] The researchers uncovered only one mutation in the VPS35 gene that could have triggered Parkinson’s in all of the seven family members.

The six implicated genes are:

  • LRRK2, SNCA, VPS35
    (Dominant; one copy of an altered gene in each cell is sufficient to cause the disorder.)
  • PARK2, PARK7, PINK1
    (Recessive; two copies of the altered genes must be present before the disorder occurs. Most often, the parents of an individual with autosomal recessive Parkinson’s each carry one copy of the altered gene but do not show signs and symptoms of the disorder.)

Other genes which may effect the onset of Parkinson’s are GBASNCAIP, and UCHL1, but the inheritance pattern is unclear relating to these genes.

Reference: US National Institutes of Health – Genetic Home Reference (Parkinson’s Disease)

The research identifying VPS35 mutations in Parkinson’s, mentioned in this blog post, was conducted by researchers at a number of international centres. A selection of references to the study are noted below:

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Alternative ways of moving, part 2: Tai Chi

I recently came across this post on the Parkinson Research Foundation’s Web site. It describes how the Chinese martial art Tai Chi (properly known as T’ai Chi Ch’uan or Taijiquan) can help people with Parkinson’s.

Now, I hadn’t heard that Tai Chi might be of use as a therapy for Parkinson’s before, but it seems to be well known in some circles (some of these circles may be centred on the United States – or it may just be that most of the online discussion is coming from that great nation). However, from what I have read, it sounds promising.

In the post noted above, Sherri Woodbridge relays the following:

According to Bill Douglas of World Tai Chi and Qigong Day, “Tai Chi movements rotate the human body in about 95% of the ways the body can move, when a long form is practiced. This is far beyond what other exercise offers […] For Parkinson’s sufferers, or anyone for that matter, this would indicate that by ‘using’ 95% of the body’s possible motion several times a week, the possibility of ‘losing’ the ability to do so diminishes accordingly.”

Douglas claims that the next best exercise, in terms of using the body’s potential movements, is swimming. He doesn’t mention yoga, which I imagine might come close. In fact, it seems to me (as someone who has dabbled in yoga but is only just finding out about Tai Chi), that Tai Chi could almost be a martial extension of yoga. They come from different continents, and have different purposes (yoga is primarily a peaceful art), but there do seem to be many similarities; each has a holistic approach and emphasises flexibility, balance, core strength and self awareness. It has been suggested to me that Tai Chi is “less stationary”, and I think it is also more externally aware.

Anyway, I digress.

Douglas also goes on to say that, “[…] One obvious reason [that everyone with Parkinson’s should be doing Tai Chi] is that Tai Chi is the most powerful balance and coordination enhancing exercise known. In many studies at major universities Tai Chi was found to be TWICE as effective in reducing falls as the other balance enhancing exercises being studied.”

Sherri goes on to talk about how the Muhammad Ali Parkinson Center are also promoting Tai Chi,

[…] because it teaches you to also be aware of your body and how it’s moving, allowing more focus in what’s happening with your body in order to prevent a fall.

So what does Tai Chi involve? It’s a martial art, so it was developed to improve fighting skills. Its name, according to the Web site www.martialtaichi.co.uk, means “Greatest Extremes Boxing”:

The Taijiquan practitioner practices movements that are greatly differentiated, that is to say – extremely slow and extremely fast, extremely soft and extremely hard. At times the Taji fighter is very aggressive, at other times very passive; at times initiating, at other times responsive; at times sticky and persistent, at other times slippery and evasive. Another strong contrast is that sometimes the art focuses on differentiation and extremity and at other times harmonisation and balance. The art develops your ability to overcome any attacker or obstacle by learning how to maximise your own strength efficiency, whilst using skill and intelligence to make the foe or obstacle easier to control.

So, it’s an art of contrasts, of unpredictability, of skill and subtlety. It requires discipline and awareness, both of the self and of the situation. It certainly sounds like something to aspire to.

On a less martial note, Tai Chi is supposed to be incredibly beneficial to the health. The Wikipedia article on Tai Chi has a whole section on health benefits, which includes the following:

Researchers have found that intensive tai chi practice shows some favo[u]rable effects on the promotion of balance control, flexibility, cardiovascular fitness, and has shown to reduce the risk of falls in both healthy elderly patients, and those [suffering from] Parkinson’s […]. Tai chi’s gentle, low impact movements burn more calories than surfing and nearly as many as downhill skiing.

The folks over at www.martialtaichi.co.uk are slightly sceptical:

These days, Tai Chi is almost exclusively known for its proclaimed health benefits. This is unfortunate, as when practiced solely for health, the art loses its health benefits […]

The art as it is popularly practiced has become little more than a form of extremely slow and gentle exercise for the elderly and infirm. While health for the elderly is in itself no bad thing, the fact remains that the exercise they practice is not Tai Chi at all. Popular, purely slow-moving and completely abstract “Tai Chi” is a very far cry from the powerful and highly acclaimed warrior art of the nineteenth and early twentieth centuries. […] One has to ask – wouldn’t any kind of gentle, slow-motion exercise achieve the same results?

So are there any health benefits with Real Martial Tai Chi™?

Yes – the same as with any other martial art. Practicing fully martial Taijiquan improves your balance, strength, endurance, lung capacity and breath control. Like any activity, it uses your muscles, which improves circulation and stimulates the lymphatic system – this can help your immune system to function more effectively.

As a fully functional martial art that involves combative speeds and physical contact, Martial Tai Chi™ develops reflexes, mental focus, co-ordination and physical awareness. What is slightly different from some other kinds of martial training is that Taiji also makes you focus on slow detailed movements, as well as fast, powerful ones. The practitioner therefore gets a more holistic kind of physical and mental workout than when performing activities that focus on speed and exertion alone. Skill is emphasised over brute strength and athleticism.

As a fully functional branch of martial science, Martial Tai Chi™ also has an element of intellectual, strategic, philosphical and even moral development. How much more beneficial is that to just standing and waving your arms about?

Okay, so Tai Chi is potentially very beneficial, but you have to work at it, and you have to take the full extent of the regime on, not just the slow bits. That sounds reasonable. Hard work, but reasonable.

I’ve entertained the idea of learning a martial art before. Back then, my primary reasons were based on the idea of self defense (fortunately, I have never been in a situation where I might have required these skills). I never quite got around to it… nor, indeed, did I ever do those car maintenance classes I was thinking of.


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Alternative ways of moving, part 1: Ballet

I recently came across two forms of physical expression being promoted for use by people with Parkinson’s. Both are “alternative” ways of moving in that they push the body out of its preferred shapes; this, it seems, is particularly useful for people with Parkinson’s, as our movement neurology is effectively broken (or breaking) and we often need to find alternative ways of doing things.

In London, the English National Ballet (ENB) are running ballet therapy classes for Parkinsonians. This was a news article on the UK television channel, Channel 4.  I didn’t see the piece on television, but this blog post seems to be a reasonable alternative. Apparently,this isn’t the first time that this has been tried:

The initiative follows the lead of the pioneering Mark Morris Dance Group in the US.

Being steeped in the traditions of my home country, I can’t shake the thought that this group ought to offer morris dancing, but the emphasis seems to be on ballet and collaborations with opera. You can watch a PBS report on their “Dance for PD” programme here. Conveniently, a transcript is also provided.

Ballet has long struck me as being a discipline that encourages a sort of physical excess – the moves are elaborate, extreme, and require a great deal of effort to perfect. I somehow imagine, though, that ballet therapy isn’t about perfection, but more about pushing your own body’s limits. One interesting aspect is the apparent effect on the psyche. Apparently,

… Parkinson’s typically flattens the personality of the sufferer.

I wasn’t aware of that. I imagine it’s a problem that emerges later during the Parkinsonian journey, and may be a combination of neurological issues and the result of many frustrating years of battling the condition.

ENB use their own upcoming productions as a springboard for each ballet therapy class, which provides:

… a focus on character, narrative and the art of ballet which is absent from more traditional forms of dance therapy, which just provide physical exercise. The focus on movement motifs and motivation from productions in the ENB repertoire adds a whole new dimension of creativity to the process. And it opens up an opportunity for activities that promote a range of emotional expressions that can help re-activate the eroded personality.

It sounds fantastic – I suppose the art galleries aren’t the only reason that it might be nice to live in the capital, after all…

Next up: Tai Chi.


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Solo Walk: Route with Photographs

I’ve added all of my route photographs to the Google Map of my Solo Walk. All of the pink placemarkers contain photographs; click on the image of the map above to go to the interactive map. You have to be quite precise to get the desired placemarker, so you might want to zoom in on part of the route to make it easier.

Here are a few highlights from the photograph set:

Related posts:


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Walked the Walk

The start of the walk: leaving KingsclereAs planned, I completed my 20 km Solo Walk yesterday here in North Hampshire. The weather was kind to me; it was warm, but not too hot, overcast but not raining. My boots were slightly less kind to me; I have a burst blister on my right heel (I botched the blister plaster application), but I’ve had worse. I also managed to avoid getting lost.

The scenery was astounding, as usual, and I very much enjoyed myself.

I didn’t make enormously good time, not least because I was wielding a camera to record the route. (Of course, blister plaster stops and, ahem, one ‘comfort break’ may also have affected my time.) Nonetheless, I covered the route (calculated on Google Maps at 20.5 kilometres or 12.7 miles) in 5.5 hours.

I managed to leave my SD card behind, which limited the route photography somewhat (fortunately, my camera has a moderate internal memory). However, I have covered a large part of the route before, so when I figure out how to present them coherently, I may well pad out the images with a few taken a week or so previously.


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Guardian article on Andrew MacDonald

Andrew McDonald, chair of the Civil Service Disability Taskforce. Image from The Guardian.

The UK newspaper The Guardian has published an interview with Andrew McDonald, a senior civil servant whose Parkinson’s diagnosis led him to realise that discrimination against disabled people was still present in the Civil Service, and – crucially – to actively fight said discrimination.