Joined: Mon Jan 12, 2009 6:42 pm
Posts: 19
|
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 of my wife suffering from MS allows me understand other movement disorders and care of many of their symptoms also 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 distoweb.
[SIZE=120]
Two years later, the kind reception of distoweb all over the world made me widen 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 as much as possible every useful little thing from a point of view always 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: [/SIZE] 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 by as normally as possible. The keys, as always: understanding, generosity, gratitude and the best predisposition. Good news, I think. Since 2010 February 1st. distoweb has its own domain, 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
|
|
Login
Register
FAQ
Search
