I remember when I first went to see my Neurologist there were 2 instances where I thought, ‘He really understands my disability – WOW!’
One comment he made was that, ‘My twitches/spasms are linked to my emotions’. When I heard this, I thought wow (lots of ‘wow’s’ I know), it’s not just my imagination and I can’t control this (although I do try because I don’t always want people to see what I’m thinking – I want to be in control). A time when this is really frustrating is when I am reading a book, the book is emotional, I twitch and loose my page – damn!
The second comment he made was that, ‘I couldn’t possibly balance when I stand up, because my brain was working overtime just to keep my body still and cope with the twitches. It has no time to work on balance’. This comment helped me understand why I chucked in the towel when they were trying to teach me how to walk at school. It was just too hard and you could never progress as my brain had no room for balance while working on twitches. Now that I have done DBS to reduce/remove my twitches I think I do have a chance that I can walk if the twitches reduce enough (although it is worth mentioning that the doctors think this is unlikely and that no other patients with my disability who have done DBS have walked). But I’m more than happy to be the first!
It has been really rare in my life to meet someone, even those in the medical profession, who understand what’s going on with me. I have only figured it out along the way and most of the time I’m explaining it to others so that they have some idea what I am experiencing and trying to manage. It’s nice to every now and then meet someone who just knows!