Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

About

Zalamanda lives in Hampshire, England. She is a mother, a writer, a scientist and an artist.

In the autumn of 2009, she was diagnosed with Young Onset Parkinson’s Disease, a progressive neurological condition that affects physical movement. Almost a year later, she started this blog.

Read the Introduction.

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24 thoughts on “About

  1. Just wanted to say hello, would love the connection 🙂

  2. Hello back at you, boo5! Nice to meet you. Feel free to drop by whenever you like.

  3. I have been following your blog closely since I was diagnosed with Young Onset this summer. I am currently taking Sinemet and Azilect and was just told to add COQ10. I wondered if you have had any experience with it or if you knew much about it.

    Keep up the great work, I check your blog daily for updates as you always have something of value to share.

  4. Thank you, Greg.

    I understand that the effectiveness of COQ10 is in doubt – at least one trial was stopped because the enzyme was having no effect. See here for details. You may also find Parknson’s UK’s Information Sheet of interest. It’s something I was considering a post on, but I don’t have any experience with it.

    You might find it simpler to subscribe to the blog; it’ll save you having to check every day, because I don’t usually post every day! (You’ll get an automated e-mail when I do post.)

    I wish you all the very best. Keep dropping by and letting me know how you’re getting on!

  5. Hello there!

    I happened upon your blog and was struck by how much we have in common. Though I am 54 and was diagnosed with PD in 2009, I am still on the young side for PD. Like you, I have rediscovered my artistic talents recently (I even have a drawing blog, but for now I don’t really discuss my PD on there…I want people to assess my drawings without bias, I guess.) As a big reader, I have also been curious about fictional characters with PD, so your recent posts on that subject intrigued me! ( I share your positive feelings about Michael J. Fox’s books, by the way.)I have been taking tai chi ever since I was diagnosed, and agree wholeheartedly with the material you’ve shared as to it’s benefits. I have subscribed to your blog…isn’t it amazing that you live in the UK and I live in California, yet we can chat this way?

  6. I’m so pleased to have found you – real serendipity! I’m a bit of a novice on the IT front – have been trying for ages to start some sort of blog where I could share some of the delights and bizarre coincidences that pepper my life and hopefully find others who understand the PD scenario but who aren’t ready to make it the most important aspect of their lives.( There will come a time, I know, when it has to be but what’s wrong with a bit of denial?) You have inspred me to pull my socks up and try harder to get my blog up and running. And I will be an avid follower of yours! Despite being 55 and a PwP for the last 10- years I still feel ridiculously young (and possibly stupid!) and struggle to adapt to the restraints PD puts on me. I have a terrible tendency to go flat out and then collapse for a bit – I MUST learn to pace mysefl – but it doesn’t come easy. I think I’m one of life’s labradors – am trying hard to become more of an Afghan hound but it’s just not in the genes.
    This morning for example I got tremendously excited when I found a truly wonderful old french cheese thingy – think it’s called a cloche a fromage- in our local MIND shop while rummaging around for costumes for our village play. I couldn’t wait to get home and rearrange the WHOLE kitchen around it but I also had to go and have two hearing aids fitted (tempted to ask for a zimmer and set of false teeth – the full set) and find some shoes so as usual ‘overdid it’. So now I should be lying down to get some energy back for a rehearsal this evening- but I found your blog . . I’ll be here all afternoon! Life’s too short to bepermanently sensible. Now I’m determined to start my owm blog – NOW this minute. Watch this space. PS Was fascinated by the books you mentioned – on my library list!

    • Well, Battyattic, they do say that youth and stupidity often go together… Seriously, it’s good that you feel young. PD can make you feel older than your years at times, but there’s always moments when you forget about that and go back to feeling your proper self again – personally, I still feel as if I’m somewhere in my 20s on good days.

      Oh, and I often try to do more than I should, too, although my Parkinson’s isn’t terribly debilitating at the moment. I think I’d be doing that even if I didn’t have Parkinson’s. It usually results in most of my intended task list getting pushed to another day. 3 o’clock (when I need to go out to fetch the kids from school) comes around so quickly!

      Good luck with the blog. It didn’t seem that dificult to set up to me, but I’ve been communicating via computers for most of my working life, so I might have had a head start. Certainly keeping it going – making posts on an existing blog – isn’t very challenging. Let me know how it goes, and if you want any help, give me a shout!

      • Thanks verymuch for your encouragement Zalamanda. Did manage to write my frst blog yesterday but i”m afraid my IT skills are being sorely tested. It took me hours!!! And I still haven’t the faintest idea where the photo I thought I’d uploaded (twice!) went. And so much other stuff to fathom. I will have to take a whole day and sit down calmly and read it all. BUT – it’s the beginning of term – there’s an Access class waiting for me to go and thrill them with the delights of what’s to come this year, a bunch of BTEC health cadets revving up to test my patience to the limits . . . I can’t help noticing that rather a lot of people with early onset PD are teachers/lecturers – I suppose after 15 years in F.E I should just be grateful I have any brain cells left at all eanwhile I’ll just keep ploddiing on with the blog. . . .

      • I’m not a teacher, but I came very close to a PGCE once… I think I thought I was too shy and hadn’t had any experience outside of academia at the time. Plus I was a bit scared of some of the potential reprobates I might be teaching. I would have taught secondary science.

  7. Oh – it’s there – the picture’s appeared! How? Why? Life is full of surprises!

    • Oh, do let me have a link, Batty! (Can I call you Batty? I get called Zala online a lot; you’re welcome to abbreviate my name thusly if you so wish.) If you’re shy of the exposure, you can send the link by e-mail if you prefer…

      • Hello Zala! Please do call me Batty – it gives me enormous pleasure to be addressed thusly (LOVE that word!). I’d be delighted to send a link – but totally clueless about how to or even, to my shame, precisely what it actually means. If you mean how to get to my blog then I think battyattic56.wordpress.com is the address. But what is this Gavatar thing that pops up out of nowhere? Should I be alarmed?? Incidentally , talking of being alarmed, you were right to stick to academia. As a Further.Ed lecturer I regularly lose the will to live. . .

      • I’m sorry, Batty – I did mean the address of your blog. A “link” is a way of getting there. The address itself is also referred to as a “URL”, which stands for “Universal Resource Locator” – an excessively grand term that almost nobody uses except for ubergeeks. Sometimes we make a link by hiding it behind some coloured text (usually blue, but the WordPress theme I use underlines the text, which then turns green when you run your mouse over it. Unless it’s in a comment, when it’s… blue!) that you can click on to get somewhere on the Web. For example, the following is the address of your blog:

        http://battyattic56.wordpress.com/

        (WordPress automatically detected the URL and made it into a link.)
        And here is a handcrafted link to it:

        Linky thing to BattyAttic’s lovely blog.

        Putting links in comments might be described as being slightly “advanced”, but putting one in a post is dead easy! The post editor has a button that looks a bit like some links in a chain; if you highlight the text you want to turn into a link and then click that button, you can paste an address into the box and WordPress does it all for you!

        Gravatar is the system that WordPress uses to remember your avatar – a picture that represents you (I do love yours; is it you sitting up on the roof? It’s a very appealing image. Mine’s a self portait from around ten years ago. Tellingly, from before I had children). So no, you don’t need to be concerned.

  8. Would like to subscribe to the blog please

  9. Dear Zalamanda,
    I think what you’re doing with this blog is wonderful! You are a great writer and your blog helps many people through their own struggle with Parkinson’s. Sometimes it helps to just know you’re not alone. I think you will enjoy this Newsy video that covers the latest discovery in detecting Parkinson’s through one’s voice. http://www.newsy.com/videos/new-algorithm-can-detect-parkinson-s-disease-in-voices Mr. Little’s discovery is HUGE! I am hoping you will embed the video into your blog to share with all your readers! At Newsy, we combine coverage from different news outlets to show different perspectives viewpoints. Thank you for your time, and great post!

  10. Hey! I would love to hear your opinion about stem cell treatment for Parkinson, if you have knowledge in this area.

  11. Hi there! My name is Cameron Von St. James and I had a quick question for you and was wondering if you’d be willing to email me when you have a free moment? My email is cvonstjames AT gmail DOT com ☺ Hope to hear from you soon!

  12. Amanda,
    Great blog. Much appreciated perspective on this condition.
    Regards,
    Shaun

  13. Hi Zalamanda,

    I came across your blog yesterday evening and spent my sleepless night reading it. It is so inspiring!

    I have been diagnosed with PD in January this year at 51 and am still in the stages of reflecting on the diagnosis and what it means for my further life. I live in Germany and found that there are no blogs by PD patients and am thinking on starting one myself. It is so helpful to learn from other patients views. I am just waiting for the final impulse to actually make it happen.
    I also stumbled over your walking posts. I will be walking a tour in autumn and might actually use it as a sponsor walk for a Parkinson’s Institute.
    Thanks for the inspiration!

    Have a happy Easter!

    loralee

  14. I was so pleased to see your section on children’s books about Parkinson’s. My father had Parkinson’s for many years. In my middle grade novel FALLING INTO THE DRAGON’S MOUTH (Henry Holt, 2016), there is a subplot in which the main character in Japan gets to know a man with Parkinson’s. I have no idea of the age of your children but perhaps this book would be of interest. Info on the book is at http://www.hatbooks.com Take care and keep active.

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