Dear friends in this wonderful forum.
Today I really feel fine. Let me please tell you why.
As many of you probably know, two years ago I managed the idea of sharing my experience with the world. I think that more than 30 years suffering from generalized dystonia enables me to do a lot of things as a patient. Moreover, the fact that my wife is suffering from MS ,makes me understand other movement disorders and the care of many of their symptoms from the standpoint of the caregiver. This way I have been working two ways: by participating in many forums, and very especially from a virtual environment (website) that I called disto web.
Two years before, the kind reception of distoweb all over the world made me widen my horizons beyond generalized dystonia and then I started to focus on focal forms (blepharospasm, cervical dystonia, oromandibular dystonia, writer's cramp, etc..) and close diseases such as Parkinson's , Essential Tremor, Huntington, Joubert, Cerebral palsy, MS (somehow), etc… In fact most of them have so much in common that it was worth extending the scope of my efforts and sharing every possible useful information from a point of view of always being positive and practical.
Currently, website ‘distoweb’ (with no profit motive, no advertising, no banners, and with 100% free physiotherapy and psychotherapeutic services) includes a number of areas as:
Detailed personal experience
Practical tips and tricks
Pro physiotherapist advice
Physiotherapist support videos
Pro psychotherapeutic advice
Personal reflections
Knowledge Management
Caregiver Role (very soon)
Blog for sharing
Useful links (approx 125)
Etc.
The aim is to continue working to share any other tool that can come in useful for patients of any disorder of movement, and also for their caregivers, so that maybe your life could go on as normally as possible.
The keys, as always: understanding, generosity, gratitude and the best predisposition.
Good news, I think. Since February 1st 2010 . distoweb has its own domain, which is faster (I hope), more reliable and safer than before:
http://www.distoweb.com
Thanks very much for sharing with me and also for encouraging me to continue on this personal project which just tries to pursue a positive approach to dystonia and other movement disorders.
Best wishes,
Fernando