October – Page 2 – Dystonia and Me

There is always hope!

Posted on October 6, 2012February 24, 2022 by dystoniaandme

There is currently no known cure for Dystonia, patients are expected to accept this. Sufferers live in the knowledge that this is what their life will be like and they will just have to learn to get on with it. But why should we have to just accept it? I understand that acceptance is necessary to deal with this condition. Yet the way this acceptance is done is so negative! Why should we have to think oh great, this is it? Instead we should be thinking, Ok, so this is what I have, but science is always moving forward, you never know, they might find a cure sooner or later.

In my mind I am confident that I won’t always be this way, I remain hopefully that there will be a cure. It may not be for 10 or 20 years, but there will be a cure. They are already finding medicines and procedures that can help with dystonia, so they are already on the path to discover the cure. Without hope and confidence, a life with dystonia would be rather depressing! We should put faith in the scientists and researchers to keep on looking until they get the answer.

After all there is ALWAYS hope!!

Archive, October

The little Achievements

Posted on October 3, 2012February 24, 2022 by dystoniaandme

Yesterday I decided I would attempt to play my flute. I knew it would be a long shot considering I cannot pull a face without my face going to spasm, and I cannot hold things in my right hand without it going into a spasm. However I had read an article about music helping some people with dystonia and I figured there would be no harm in trying. After carefully practising holding the flute so that I was not supporting it at all with my right hand I gave it ago.

I started off by trying to play my scales. I soon realised that as long as I avoided playing notes in the higher register then my face took longer to spasm. I presume I must alter slightly my lip positions when I played the higher notes and this must be what caused the spasm. I carried on playing and my hand only went into spasm when I played two of the lower notes. I figure that I must have put some pressure on my right hand with these two notes, so I made a mental note to avoid playing those two. I then moved onto playing some basic pieces, avoiding the notes that I knew would set a spasm off immediately. In the end I was managing to play about a page before my face went into a spasm.

I am so happy! I never thought I would be able to play my flute again! It does not matter that I can only play certain notes, it is better than not being able to play at all. I am going to try and practise my flute every day in the hope that I may eventually be able to play more and more before I spasm. I do not know if it will work but it is worth a try!!!

🙂

Archive, October

Musings on my dystonia

Posted on October 1, 2012February 24, 2022 by dystoniaandme

This evening I read a quote that put a massive grin on my face- ‘Try to be like the turtle…at ease in your own shell‘. Such simple words lifted my spirits right up. For me at this current moment in time they ring true. The way I look now is not what I would call me. The dystonia alien controls how my face looks and what position my arm and leg take on. However I need to accept for now this is part of me. No matter how I look, I need to learn to be confident in myself because at the end of the day I am me. It is my personality that counts not my appearance.