Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Look Over There…



(I seem to have a Joe Jackson earworm courtesy of that title. A welcome earworm, because I like the song, but it isn’t actually very relevant to the topic.)

More specifically, Canada. And this Web site, which is the brainchild of Dr. Soania Mathur, who was 27 when she was diagnosed with Young Onset Parkinson’s. She’s about my age – 40 when she wrote My Story – and she has three daughters. She says,

[…] Through it all however, life goes on and I’ve learned that to focus on the negative alone changes you into a person that isn’t living life but instead just getting by. At some point you have to surrender your fear of the future and begin living your present. . I now understand that the diagnosis is simply not within my control, but how I face this challenge is mine to determine.

I now focus on my blessings, ones that perhaps I would not have recognized had it not been for this condition. […] Now the “why me” has been replaced for the most part by the “why not me”. Better me than my children or anyone else that I love. Better me than someone else who has to face this challenge alone. Because that is how I view PD, not as a disease so much as a daily challenge.

This remarkable woman is a writer (there are three children’s books on the subject on Parkinson’s underway, and Soania’s blog is a fascinating read), a speaker, an active fundraiser and advocate as well as a medical doctor and a mother. She’s been working with the Michael J Fox Foundation, and I suspect that her story is as impressive as her fellow Canadian’s, as well as having many parallel aspects. She’s just not as famous.

The name of Soania’s Web site is intriguing. She states:

“Designing a Cure for Parkinson’s Disease” was created to conceptualize and implement strategies to raise funds directed towards research and awareness of Parkinson’s Disease.”

But there are, as yet few of these strategies visible apart from the awareness-raising aspect of its very existence and mention of her writing and speaking engagements (which all seem to be in Canada). And a handbag.

An eminently useful handbag. Not very trendy.

A handbag?

It is, of course, important to be earnest, but Oscar Wilde’s line reverberates through English culture and, it has to be said, that there is something inherently frivolous about handbags (however useful they are; I only own useful ones, and even then I prefer pockets. Unfortunately, ladies clothes designers seem to prefer no pockets).

Dr. Mathur talks about collaborating with a lady called Kelly Connacher, of EllyKelly Designs, to design a handbag whose sales will generate funds for Parkinson’s charities.Unfortunately, the EllyKelly Web site appears to be defunct, which doesn’t bode well. This is a dreadful shame, but, from a personal perspective, I doubt I could have afforded the bag anyhow; apparently, “… EllyKelly bags start at $1,695 …” And, it has to be said, that the examples of EllyKelly bags that I found online weren’t exactly my sort of style. But I’m sure that they are dreadfully fashionable. I just don’t really do fashion. It’d only get covered in mud or paint if I did.


4 thoughts on “Look Over There…

  1. Interesting website… Thanks for thE link. How’s the job? I hope you are fitting everything in?!

    • The job’s fine. At the moment, it’s a bit quiet, still, but I’m starting to find things to do – not least the extremely important (and utterly pointless apart from for exercise) bike ride around the site at lunchtime. Fingers crossed I’ll still manage to ride a few times a week when the weather – inevitably – deterioates

  2. Thanks so kindly for taking the time to read my blog – your time and attention is greatly appreciated! Unfortunately due to unforeseen circumstances, my dear friend Kelly has had a life change and is starting over. There will be more to come on future collaborations with her and others (affordable ones I assure you! 😉 For now, the “designing” I’m doing is more with words through my writing and speaking engagements – motivating others to live well with this disease until that cure is found, is by far my biggest passion!
    Soania Mathur

    • Soania, thank you for noticing my link to your blog! I am sorry to hear that Kelly has had to rethink her plans; I hope that she does well in future ventures. And I wholeheartedly support your aims. Words are, after all, very powerful instruments.

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