The dystonia from inside
Iíve been living together with dystonia ever since I was a child, fact I do believe entitles me to speak about it from my own view. They were tough times indeed for me and my closest circle, caused by the scant knowledge available concerning this disease back in the 70s. In fact, the worst thing for me was the hard process, with endless proofs and tests (some of them very painful) and treatments, before a final diagnosis. It came after having been checked by different medical teams in some places and hospitals throughout Spain.
Since then things have fortunately changed a lot in many aspects, specially for those who are carriers of a mutation in the DYT1 gene, now very easy to diagnose through a single and specific genetic test. I must say I got my definitive diagnosis recently, in 2007, being 42, when I finally decided I should face (again) my disorder in a say 'constructive' way,
I think it is really important to consider properly dystonia and taking into account the rest of diseases existing. We unfortunately know most of the cases have no cure, but it is also true dystonia is not a mortal illness anymore. Furthermore dystonia implications or consequences are very often incomparable with blindness, cancer, immunodeficiency, and so many other diseases that exist.
I think TD patients, when facing such a delicate situation as their disease, should try and consider themselves in a world where many people put up with conditions much harder than theirs in their lives. When I am asked about my life and my familiar situation I usually answer the same: 'we go through in sporting attitude'. In fact, I think I should face my life exactly this way even if I was a healthy person, trying to win every single daily match and also accepting every defeat when occurring. Something probably easier to be said than to be accepted.
Which kind of limitations does TD cause? Both physical and psychological, being the second ones (in my opinion) much more difficult to treat and be treated. At least, this is my own experience.
If we talk now about physical limitations we must consider the lack of ability for acts which require skilfulness (writing, playing guitar, handling things) as a determining factor, as it is the difficulty to coordinate movements when walking. When time goes by it is very usual the locomotive system deteriorates gradually, mostly the articulations, and then discomfort and pain come to appear even in a chronic way one usually gets accustomed to.
Symptomatologic treatment for dystonia is usually carried out by prescription of medicines . However, there is a series of personal tricks which can be, at least sometimes, more useful than any other treatment. In fact, the key relies on understanding there are two different ways of doing things: normal way and our way, and we must be conscious the only difference between them is usually nothing but 'aesthetic' manners. Accepting things the very way they are becomes the first step to try, just to try, to move forward. A task, again, not easy to carry out.
I remember myself hiding in my own shell for years, maybe a whole decade, only dealing with my personal circle of friends and family, and without any interest of meeting other people. I was a young boy who probably was saved by the only useful alternative solutions that I met: a couple of hobbies I almost became an specialist of. At that time I tried (not very successfully) a lot of medicines which even would affect my behaviour in some way or another for a long period of time. I was conscious somehow I had been restricting my own human potential and capabilities and refusing any opportunity from life. Fortunately there came a day I managed to get my act together and finally understand very clearly these key things:
The only way out for me was accepting my own situation as it was.
Moreover, those who really loved me would also accept me and my special circumstances.
My personal 'difficulties' couldnít definitely ruin my life.
I had to admit a slower speed when facing many of the challenges in life, although it didnít mean I had to resign myself.
Indeed, the main limitations seem to be psychological, and sometimes cyclic and full of ups and downs very difficult to deal with.