Dancing with Dystonia

6 02 2011

After much soul searching, I have decided that rather than set up a different blog to raise awareness of Dystonia – that I would add an additional page to my blog instead.

On this page I have shared little of my journey with Dystonia – my dance partner of the past two years – in the hope that someone out there may know of some natural and non-invasive treatment for this ‘incurable condition’.

Dystonia is a malfunction of the part of the brain (basal ganglia) that controls different muscle groups. It is a movement disorder that causes the muscles to contract and spasm involuntarily.

Unbelievably, there are 70,000 suffers of Dystonia in the UK alone – the same number as clinically obese people – and yet very few people have ever heard of this chronic condition that affects so many lives.

In North America there are known to be 550,000 people diagnosed with some form of Dystonia; although it is believed that the real figure is more likely to be in the region of One Million.

I hope that you decide to check out the new page ‘Dancing with Dystonia’ – and leave me a comment if this is a condition you are familiar with – or would like to know more about.

Day 37 – 365 Days of Celebration

Today I will be celebrating finding the courage to share this part of my journey – in the hope that one day a natural treatment will be found – and we all can move towards a Dystonia free life.

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18 responses

6 02 2011
MK Mercurio

HI Julie,
I loved reading your About page and getting inspired by The Dash. I heard that poem long ago and was moved to tears. I think keeping that feeling alive helps to keep us alive too.

I am also part of the PostADay2011 Challenge and my goal is to visit other bloggers, read, comment, invite them to visit me and grow my friendship base. I live in Colorado, have a darling 2 year old grandson (who also lives in Colorado), I hike, write, walk and blog. Thanks for your blog post!

Marge

6 02 2011
1961 Girl

Hi Marge.

Thanks for stopping by to say ‘hello’ I’m delighted that you enjoyed ‘The Dash’. It is a great reminder to ask ourselves from time to time whether what we are doing is the best use of our time here on earth, as none of us know how long we are destined to be around. So we might as well kick back from time to time and just enjoy the moment. Good luck with your PostaDay2011 challenge.
Juls 🙂

6 02 2011
eof737

Fascinating and very brave of you to share Julie. I have heard of the condition and remember reading some press about Robert F. Kennedy, Jr. and Jenny Craig having it.
Of course, I support your dance and journey. Let me know if you need anything. I did a quick Google search and there is a ton of information on the subject here. Lots of hugs and healing light coming your way! 🙂
Eliz

6 02 2011
barb19

I too think you are very brave to share this part of your journey with us Julie. I’ve never actually heard of the condition before and hope that one day, a natural treatment will be found.

6 02 2011
1961 Girl

Thank you Barb. I am just very fortunate that I am in a position that I am able to share in this way. If I can do my bit to help raise awareness and attract support towards finding a natural treatment, my mission will have been accomplished. I sense that there is someone out there who is working with people to ‘re-wire’ their brains through a set of mind excercises which re-connect the part which is ‘mis-firing’. I have done quite a lot of research in this area and approached a number of therapists. So far, I’ve yet to meet anyone who is working directly with this condition. Juls xxx

6 02 2011
Knight

I share the comments about your bravery in sharing this with us. You are a very talented and gifted writer and to achieve what you are doing is remarkable. It is also typical of you that you want to help others by sharing the problem in the hope of finding a solution. Bless you.
Is there a charity or organisation that we could support?

6 02 2011
1961 Girl

I don’t feel very brave – just driven!

I almost backed out of writing today’s post and adding the additional page to the blog as it meant sharing a little more than I was comfortable with. Even so, I was going to ‘park’ the idea for a while until yesterday someone pushed me into writing it as they wanted to share my story with thier audience…and they were on a deadline…so I had to decide quickly whether or not to take the plunge…and so I did.

As for charities, I am still reseaching different charities as I intend to give 10% of all the profits of my new business to a charity which in my opinion is doing the most to raise awareness of this condition. Although the ones in the UK don’t seem to be very successful in this respect as I’ve yet to meet anyone who has heard of it.

6 02 2011
Katie

Thanks for being brave enough to share your story. I haven’t heard of dystonia before, it’s so great that you are raising awareness. I suffer from ME and Fibromyalgia, which although not the same as you, seeing someone be bold enough to share a part of their lives which is so personal is inspiring. Someone said something quite harsh about my being in a wheelchair yesterday, waking up to read a blog about someone throwing their illness out there has made me feel better. It makes me realize that I shouldn’t be ashamed of my invisible illness and instead be brave like you and speak out about these important issues. Good you for Julie- keep going! xx

6 02 2011
1961 Girl

Hello Kate.

Thank you for connecting and for your lovely message. Living with ME and Fibromyalgia must be a tough challenge and I really admire your bravery. You write beautifully and I would imagine this gives you a wonderful creative outlet. Have you thought about writing a blog about the realities of living with ME? It is amazing how much comfort other people will draw from connecting with your experience. Compared to what you have to deal with on a daily basis, I am very fortunate…and there are so many other Dystonia sufferers who have it so much worse than me…my lovely brother included. I do believe that everything in life happens for a reason and if my diagnosis means that I am driven to raise awareness of this condition, then so be it. I hope that you are no longer ashamed of your ‘invisible’ illness and that you will hold your head high and say ‘this is me – and I love who I am’.
Hugs – Juls xxx

6 02 2011
classyrose

Julie,

I am glad you decided not to ‘park’ the idea. Thank you for sharing this information about Dystonia. I too had never heard of it before. I did hear recently that there are new discoveries being made on Parkinson’s and maybe this will result in the same for Dystonia. 🙂

Following are two news items from the past week.

http://www.webmd.com/parkinsons-disease/news/20110201/new-genetic-clues-to-parkinsons-disease

http://pharmalive.com/News/index.cfm?articleid=759326&categoryid=10

7 02 2011
1961 Girl

Hi Rose,

Thank you for sharing these links. I will go and check them now. Any information is useful and could lead eventually to the right place. I will continue to keep the faith that a natural cure will be found…sooner rather than later. Thank you for your support. Juls x

6 02 2011
Quidmont

Hi Julie,

I have never heard of this but gaining awareness can’t hurt the problem. I know nothing about it but we’re in a world where we’re all seperated by only six degrees of separation, (or so the saying goes). Who knows where my connection may lead?

Hope it leads somewhere good for both of us. 🙂 Please keep writing on this to let us know what you find.

Thanks.

– Bob

7 02 2011
1961 Girl

Hi Bob,

I really do hope to raise awareness of the condition and my Blogging Buddies have all been hugely supportive. Obviously I don’t want to bore everyone about the subject so I will keep future references to a minimum until I have some important information to share.

It will be interesting to see where the journey leads this year. I kind of get the feeling, it won’t be where any of us first thought!

Best wishes,
Juls 🙂

7 02 2011
Quidmont

I think that’s a fair statement for all of us Juls. 🙂 But wherever it lead should be amazing.

Happy Birthday Julie!

– Bob

6 02 2011
Seashell

Thanks for putting yourself out there Juls. An incredibly brave thing to do. It’s a big part of who you are and I’m so glad you shared with us.
~ shell

7 02 2011
1961 Girl

Thank you Shell. Yes…it is a big part of my life…and one that I am learning to deal with. If sharing this information helps just one other person, it will have been worth it. – Juls x

7 02 2011
Papa Joe

Hi Juls!

I’m still catching up on my blog backlog and this is quite a post. You’re so full of life in every post that this is a bit of a shock. You’re amazing in turning everything that comes your way, no matter how bad, into a positive.

We can all learn from you Juls. Thanks for sharing with us. 🙂

– Papa Joe

7 02 2011
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