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Carers UK Forum • For those with a movement disorder and their caregivers
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For those with a movement disorder and their caregivers

Posted: Mon May 11, 2009 9:44 pm
by Guest
Hi friends of this great forum.

I must say I started to live with torsion generalized dystonia (a rare movement disorder that causes pain, cramps, lack of skill, etc., and many difficulties in daily life) when I was about 11. Now I am 44 and some months ago I felt I could help other people with my personal experience, my way of facing this illness now and in the past, and so on.

But I must also say I am CAREGIVER of my wife suffering multiple sclerosis (we are facing now her 7th stroke). So I feel I can help from the opposite side...

So here I am trying to share the keys of my experience, what I call ‘a positive approach to dystonia’ but also to… any other chronic, incurable, or similar disorder. Mainly those related to movement disorders as Parkinson’s D, Essential Tremor, etc..

I use to say that, of course, I am not a model of anything, and I also say I trust those people who help you with an extra bit of understading, something so really expensive to get these days. ‘Understanding’: in my opinion, the best medicine to deal with.

In a simple way, and absolutely far from any interest but showing my own experience, I have spent long time months designing and developing a webspace from which I try to help sharing very carefully the best of me in a practical way and considerating not only physical aspects but animics too. You can also access to free pro physiotherapy and psychological advice, and so on.

You know. My son is now 11 and he has a 50% probability to be DYT1 gene carrier, and maybe I will have also to be caregiver of him if he developes my own disorder. And sometimes I am really scared of him being sick. But sometimes I feel my DUTY is being positive, sharing, building... for him, for me and my family... for you all.

Thanks for being there.

My best wishes,

Fernando
Valencia-Spain
http://webs.ono.com/distoweb (no banner, no adsa, no earnings; it has helped a lot of sick people and their caregivers)