Hi friends of this great forum.
I come from Spain-Europe to this support group to collaborate, and specially to this area, after having done the same (I could say ‘successfully’) in similar groups in my country, and so in my language (Spanish).
I must say I started to live with torsion dystonia (an incurable movement disorder that causes pain, cramps, lack of skill, etc., and many difficulties in daily life) when I was about 11. Now I am 43 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. Moreover, my particular familiar conditons had become more difficult than ever when my wife was diagnosed multiple sclerosis. At that moment I knew I had to work harder for her, for our son and, why not, also for other people with this kind of trauma. I hadn’t fallen into depression until then, kind of a miracle, and there had come many other threatens to be faced.
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.
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.
The url, distoweb, was been recently published in Spanish (2008 Feb, 6th.), and English (2008 Apr, 9th), and I hope I will reach lots of patients with dystonia, parkinson, etc. who can find it useful in their lives.
Please, this is as yours as mine. Do not doubt doing with it whatever you feel it can be useful to other people, specially to ill people close to depression. I feel it can help.
My best wishes,
Fernando
Valencia-Spain
I come from Spain-Europe to this support group to collaborate, and specially to this area, after having done the same (I could say ‘successfully’) in similar groups in my country, and so in my language (Spanish).
I must say I started to live with torsion dystonia (an incurable movement disorder that causes pain, cramps, lack of skill, etc., and many difficulties in daily life) when I was about 11. Now I am 43 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. Moreover, my particular familiar conditons had become more difficult than ever when my wife was diagnosed multiple sclerosis. At that moment I knew I had to work harder for her, for our son and, why not, also for other people with this kind of trauma. I hadn’t fallen into depression until then, kind of a miracle, and there had come many other threatens to be faced.
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.
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.
The url, distoweb, was been recently published in Spanish (2008 Feb, 6th.), and English (2008 Apr, 9th), and I hope I will reach lots of patients with dystonia, parkinson, etc. who can find it useful in their lives.
Please, this is as yours as mine. Do not doubt doing with it whatever you feel it can be useful to other people, specially to ill people close to depression. I feel it can help.
My best wishes,
Fernando
Valencia-Spain
