Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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23andMe make some Progress

A bad pun.

23andMe, the private genetic company with a special interest in Parkinson’s, has discovered a gene that may protect against Parkinson’s.

The LRRK2 gene is recognized as a significant risk factor for Parkinson’s disease. Of the approximately 1 in 10,000 people who carry a mutation called G2019S on the LRRK2 gene, about half develop Parkinson’s disease. 23andMe has a large cohort of individuals who carry the G2019S mutation but surprisingly, do not have Parkinson’s. In examining this cohort, 23andMe discovered the potentially protective nature of SGK1.

23andMe – Press Release

The Scripps Research Institute will investigate the finding further, with the aim of trying to “identify a new and potentially vital therapeutic target for Parkinson’s disease”, with funding from the Michael J. Fox Foundation.

Unfortunately, it doesn’t seem to be possible to extract specific gene data from the 23andMe Web interface; I was curious as to whether I had the G2019S mutation in LRRK2, but wasn’t able to find out.


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Mervyn Peake Awards 2012

'Enchanted Forest' by Marjorie Abbott - Winner (Art) 2011. Image hosted by Parkinson's UK.

In this morning’s post, I received notificationof the Mervyn Peake Awards 2012, and an invitation to enter. (This was because I submitted an entry last year.) The relevant page on Parkinson’s UK’s Web site hasn’t been updated yet, but I’m sure it will be soon.

Edit: That page is updated now!

The Mervyn Peake Awards celebrate the creativity of people with Parkinson’s, and commemorate the life of Mervyn Peake, himself an artist and a writer who had Parkinson’s. The awards are judged and supported by Peake’s family.

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There are four categories:

  • Art
  • Poetry
  • Photography
  • Digital Art

The closing date is 12th March 2011.


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Ropinirole Diary: the fourth week

Crikey, these are boring illustrations. This week, I scanned the strip.This was the last week of the starter pack. Three green tablets, 1mg each, making a daily total of 3mg. I only managed to completely miss one dose.

Guess what? I still haven’t noticed any difference.

I completely forgot to mention that, during the second week, I did venture to drink a little wine. Now, the leaflet that comes with the starter pack insists that alcohol should be avoided. It doesn’t say why. Continue reading


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Stem Cell Controversy in Europe; Australians may have a solution

Drawn (very quickly) in Corel DrawWith the advent of President Obama (and his liberal views on stem cell technology) in America, it seemed that the future of stem cell research was looking up. But now a European court ruling has put such research at risk.

A report in the UK’s Daily Mail (a paper not usually noted for its science coverage) states that the 13 judges in Luxembourg decided “unanimously” that the exploitation of human embryos for commercial profit was “contrary to morality”.

The Mail reports that:

The decision […] follows a case brought by Greenpeace in Germany against Professor Oliver Brüstle at the University of Bonn.

Professor Brüstle filed a patent with the German government in 1997 to convert embryonic stem cells into nerve cells to help patients with Parkinson’s disease.

[…]
The resulting 10-page judgement prohibits patenting any process which involves removing a stem cell from and then destroying a ‘human embryo’ – defined as anything ‘capable of commencing the process of development of a human being.’

It states: ‘Patents may not be granted for inventions whose commercial exploitation would be contrary to morality… In particular patents shall not be awarded for uses of human embryos for industrial or commercial purpose.’

Continue reading


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Ropoinirole Diary: the third week

This past week’s dose consisted of two tablets: a white one and a yellow one, giving a total of 0.75 mg, three times a day (2.25 mg altogether). There still doesn’t seem to have been any effect on my symptoms, although I feel a bit less drowsy (either my system has got used to it, or I suppose it could be a result of me getting a bit more sleep). However, I gather that it can take some time for ropinirole to start working, so I’m being patient.

I’m very happy to report that there is still no sign of any nausea or of any desire to go and spend all my husband’s money on impractical lingerie or anything else of that ilk (you don’t think that buying a bunch of art supplies on eBay counts, do you?).

Continue reading


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The Tale of a Parkie Princess, by Annie Konopka

Further to my posts about books about Parkinson’s for children, I have now received a copy of Annie Konopka’s “The Tale of a Parkie Princess”.

It’s a simple tale, and it seems to be aimed mainly at younger girls, although that doesn’t exclude younger boys (many of whom, untainted by society’s expectations, are quite happy to like pink and identify with female characters). The illustrations are by the author’s own children, which is sweet.

The explanations are simple – “[The doctor] told her that her brain was not working as it should, but he could give her some medicine to make her feel better” – and the drugs do, apparently, work, although they still leave Princess Parkinsonia (who is a mummy) shaking a bit, walking funny and unable to “do things as she did before…”

But everybody loves her, and love is all-conquering in fairy tales, so there is a happy ending even though she doesn’t get better (after all, how could she?).

I’m a bit ambivalent about this book. I’m trying really hard not to be annoyed by the occasional grammatical slip or that rather pointless collection of stray exclamation marks on page 9. So, ignoring that, and thinking only about the story, I find it insubstantial but appealing. My daughter loves it, and my son (who is 7) seems rather fond, too. I think that it does a good job of targeting the younger age group, and it isn’t sad and depressing. It refers to a parent – specifically a mother – with Parkinson’s, and it doesn’t feel like a rewrite of a book about a grandparent (because, of course, it isn’t). It mentions diagnosis, and expresses how shocking that can be (that’s where those exclamation marks were), and it refers exclusively (albeit obliquely) to the early stages of Parkinson’s. Which is fine, because children are not that young for very long, and their parent is unlikely to have progressed significantly during the time that they are so very young.

“The Tale of a Parkie Princess” is a good book for younger children whose parents are affected by Parkinson’s , but I don’t consider it to be essential.