Purpose of this webpage
This webpage has been created with the only idea of relating things and share them. Patient of torsion dystonia since childhood, I have been living a rather complicated life every single day ever since then. Recent studies have proved I was born with a mutation in the DYT1 gene in my chromosome, something impossible to know 30 years ago when I began my long series of medical tests and treatments. Now I feel I can help other people with my own experience, not advising anyone but sharing the way I cope with my disease.
Any patient of dystonia knows common pieces of advice aren't useful at all when trying to carry out the most common and simple things. Taking into account this idea, and a great deal of concern and sympathy I believe it deserves, I have tried to develop a special space in order to tell, and invite others to tell, useful ideas not only in a practical and physical way but specially in psychological terms.
Very often I could say the fact of living with constant pain and sorrow, missing lots of opportunities in life (most of them really difficult to be explained to the world), victim of plenty of unfounded fears, sometimes really close to desperation and, above all, hungry for an extra bit of understanding, makes the patient of dystonia a delicate and suffering person who has to face both world and life with a 'different' disposition. However, you might find this person can be more useful to other people than expected.
St. Augustine wrote 'Suffering is bad, but having suffered is so good', so I think every patient of dystonia should make the most of the second part of this lesson and use it to help other people, even healthy people, as much as possible.
It is my personal conviction that you will probably find a so special person behind any patient of dystonia, with really strong values and the 'cleverness' which shows up when the need of moving forward is a constant matter. However, you will only find a strong and productive person from the complete understanding of any single physical (and psychological) limitation of this one.
The purpose of this page is, to sum up, an opportunity to demonstrate there are ways to live with dystonia with absolute dignity, developing the best of each one's possibilities and, of course, not feeling ashamed of anything at all.