Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Why Chocolate Might Be Good For Me

Some chocolate. (Image borrowed from Wikimedia Commons.)

I like chocolate. Who doesn’t? (Oh, there are a few strange folks who don’t, it’s true, but most people seem to like the stuff.)

It’s laden with fat and sugar, mind, and conventional dietary advice is that it’s not really very good for you (or me, for that matter).

However, every now and then (usually around Christmas time, as noted here), you find stories that supply vague, pseudo-scientific reasons why chocolate may be good for you.

The story that I have just come across may be slightly different (thank you, Bibmomma, for the hint) is that:

a) People with Parkinson’s apparently eat more chocolate (neurologists at Dresden University of Technology published the results of a self-questionnaire on this topic – see the abstract here); and

b) There may be some subconscious urge (with a biological basis) causing this.

A Dutch psychiatrist, Walter van den Broek, blogging under the name Dr. Shock, discusses this result and hypothesizes on the possible reasons why chocolate is especially important to people with Parkinson’s. You can read his full post here. Van den Broek, who seems to have a special interest in chocolate, states:

Beta-phenyl-ethylamine is the only possible psychoactive substance in chocolate that passes the blood brain barrier. It is a direct dopamine releasing ingredient. Moreover, cocoa contains caffeine and it’s structural derivatives, these components can have antiparkinsonian effects.

As you may be aware, it is lack of dopamine that causes Parkinsonian symptoms (Parkinson’s Disease is a condition in which the brain does not make sufficient dopamine; dopamine itself will not cross the blood-brain barrier, and so several drug treatments for Parkinson’s utilise various precursors of dopamine – such as beta-phenyl-ethylamine).

More about the potential effects of caffeine later.

But in the meantime, consider this comment, made by Parkinson’s patient Vivien Ambler on the Web site Medical News Today:

I have discovered by chance that consuming chocolate improves my motor symptoms. my body just craved chocolate & after I ate a few small pieces I noticed my symptoms improved for the rest of the day.

Vivien was responding to an article posted on the site referring to a study made at the University of Nottingham in which the ‘brain boosting power’ of chocolate was investigated. No reference was made to Parkinson’s or to dopamine in this article; instead, it referred to flavanols (substances that occur naturally in chocolate, but which are sometimes removed in commercial confectionery due to their bitter taste) and their observed ability to “boost blood flow to key areas of the brain for two to three hours.” I suspect that the effect Vivien noticed was more likely to be due to the beta-phenyl-ethylamine noted by van den Broek.

The team at Dresden have themselves planned a clinical trial on the  “Effects of Chocolate on Motor Symptoms of Parkinson’s Disease”. This was also reported by the Daily Mail in a health round-up article. It is possible that this trial is now complete, but I have not yet seen any reference to the results.

One final point: if it is possible to extract an anti-Parkinsonian substance from chocolate and package it up in a pill, would it be a good idea? Or would we rather eat the chocolate?

More good news about chocolate in the following post – this time for everybody, not just Parkinsonians!

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Just Walk

Scarpa Attack, bought circa 1993

My Scarpa walking boots

I’m all signed up and kitted out with a Just Giving sponsorship page to walk 20 km over the South Downs for Parkinson’s UK.

20 km is just under 12.5 miles; I’ve certainly walked that far before (albeit pre-Parkinson’s), so I’m reasonably confident that I can do it. The South Downs are an area of open chalk hills in Southern England, extending from Hampshire to Sussex. The walk is an organised event and Parkinson’s UK is one of the official charity partners.

I’ve never done an organised event like this before. I’m quite looking forward to it; the walk should be beautiful and, hopefully, just difficult enough. I did contemplate walking further (there are options to walk 10 km, 20 km, 40 km and 60 km), but am reserving the 40 km (nearly 25 miles) for next year, if this year goes well…

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Music and Parkinson’s

This seems to be a big topic. Surprisingly so. But I’ve just come across a footnote in Oliver Sacks’ Awakenings that really made me think about music as a form of salvation in a way I have never considered before. It comes on top of a number of other small mentions that, I think, have had a cumulative effect on me.

I like music. I’m rubbish at it, but I like listening to it. I lean towards the popular rather than the classical, but quite often find that my favourites lie more in the realm of the alternative. No matter; each to their own. I understand that the music that effects an individual most on an emotional level is likely to be the most effective in terms of neurological benefit (this is discussed in much finer terms by Dr. Sacks in the excerpt reproduced below).

Singing is regarded as a useful activity for Parkinsonians (that’s a fancy word for People with Parkinson’s, or possibly even, People with Parkinsonian Symptoms). I’ve read and heard about it on several occasions, but recently my physiotherapist has been actively encouraging us – a group of recently diagnosed Parkinsonians who are attending a series of exercise classes that she is running – to form a singing group. Parkinson’s often affects the voice, reducing the volume, and actively singing can help to counteract this.

I, however, am pretty much convinced that I cannot sing. I think that I may be tone-deaf; I am even more certain that I cannot carry a tune. I suppose I will have to get over this.

Recently, while talking to my GP (general practitioner, roughly synonymous with family doctor), and discussing exercise, she asked me if I exercised to music. As she pointed out, the rhythm inherent in (most forms of) music is useful in establishing and maintaining a physical exercising rhythm.

And then there was the note in Awakenings.

This power of music to integrate and cure, to liberate the Parkinsonian and give him freedom while it lasts (‘You are the music/while the music lasts,’ T. S. Eliot), is quite fundamental, and seen in every patient. This was shown beautifully, and discussed with great insight, by Edith T., a former music teacher. She said that she had become ‘graceless’ with the onset of Parkinsonism, that her movements had become ‘wooden, mechanical – like a robot or doll’, that she had lost her former ‘naturalness’ and musickness’ of movement, that – in a word – she had been ‘unmusicked’. Fortunately, she added, the disease was ‘accompanied by its own cure’. I raised an eyebrow: ‘Music’, she said, ‘as I am unmusicked, I must be remusicked.’ Often, she said, she would find herself ‘frozen’, utterly motionless, deprived of the power, the impulse, the thought, of any motion; she felt at such times ‘like a still photo, a frozen frame’ – a mere optical flat, without substance or life. In this state, this statelessness, this timeless irreality, she would remain, motionless-helpless, until music came: ‘Songs, tunes I knew from years ago, catchy tunes, rhythmic tunes, the sort I loved to dance to.’

With this sudden imagining of music, this coming of spontaneous inner music, the power of motion, action, would suddenly return, and the sense of substance and restored personality and reality; now, as Edith T. put it, she could ‘dance out of frame’, the flat frozen visualness in which she was trapped, and move freely and gracefully: ‘It was like suddenly remembering myself, my own living tune.’ But then, just as suddenly, the inner music would cease, and with this all motion and actuality would vanish, and she would fall instantly, once again, into a Parkinsonian abyss.

I am often asked what music can serve to awaken such patients, and what precisely is going on at such times. Rhythmic impetus has to be present, but has to be ’embedded’ in melody. Raw overpowering rhythm, which cannot be so embedded, causes a pathological jerking, it coerces instead of freeing the patient, and thus has an anti-musical effect. Shapeless crooning (‘slush’, Miss D. calls this), without sufficient rhythmic/motor power, fails to move her – either emotionally or motorically – at all. One is reminded here of Nietzsche’s definition regarding the pathology of music: here he sees, first and foremost, ‘degeneration of the sense of rhythm’. ‘Degenerate’ music sickens and forces, ‘healthy’ music heals and frees. This was precisely Miss D.’s experience: she could never abide ‘banging’ or slush’, and required a firm but ‘shapely’ music.

Would any music, then, provided it was firm and shapely, serve to get Frances D. going in the right way? By no means. The only music which affected her in the right way was music she could enjoy; only music which moved her ‘soul’ had this power to move her body. ‘She was only moved by music which moved her.’ The ‘movement’ was simultaneously emotional and motoric, and essentially autonomous (this distinguishing it from passive jerkings and pathology).

(Oliver Sacks, note 45, p.60 Awakenings, 1990 paperback edition. From the section describing Frances D.
Transcription from www.acamedia.info)

Now, I do not – at present – suffer from freezing or paralysis (apart from very, very brief interludes when I get ‘stuck’ in a difficult position of my own making because I’ve insisted on clambering over things), but I can see how music could act upon the brain to prompt movement. It must be similar to the way in which rhythm can assist exercise – as per my doctor’s suggestion – and, of course, to the idea behind all forms of dance.

It certainly sounds like an excellent excuse to play music more often!


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High Heels and Dystonia

Dolcis block heel shoes, bought circa 1996

These be the shoes...

I don’t often wear high-heeled shoes, but I had occasion to do so yesterday, when I had a job interview. I also had a good wander around Andover, where the interview was.

I decided not to wear the orthotic insoles. They don’t actually seem to help very much, and in some shoes they make my feet ache more than they would without the insoles. I gave my interview shoes (block-heeled lace-ups which go nicely with a trouser suit) a spit and polish and off I went. By the end of the day (not-very-stressful interview and a couple of hours of fairly purposeful town-walking), my feet were fine. I realised that I had scarcely been bothered by the dystonia at all.

The only problem with heels is that I haven’t mastered the art of running in them.


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Podiatric Solutions for Dystonic Feet

Today, I went back to see the podiatrist to ask her about the dystonic toe-curling that I have been experiencing.

I took with me copies of the two Parkinson’s UK information sheets that I mentioned before (dystonia and feet). She seemed to find them quite interesting; in fact, she asked if she could keep them. Of course, I said yes (I’d printed them specifically for the appointment).

However, she didn’t prescribe a toe prop or a toe splint. These devices are both made of silicon and are used to support or straighten the toes.  My podiatrist told me that she was reluctant to give me either of these, as I am still relatively young and fit, and she wanted to try to correct my problem rather than just ease it (but she’s reserving toe props for a second attempt).

Orthotic insoles with metatarsal dome

Instead, she gave me a pair of 3/4 length insoles with a metatarsal dome. This dome, which sits just behind the ball of my foot, is intended to encourage my toes to spread out. It feels very strange. I’m to wear them (both feet) for short periods initially, and build up the time I’m using them until I’m wearing them pretty much all day.