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Still Fighting

Not being able to catch your breath is the worst feeling in the world.  Out of all of my dystonia symptoms, this is the scariest.  Yes, I hated not having hands, and yes I hate not being able to walk sometimes or not be able to turn my head but to feel like you are suffocating all the time is terrible.  I am afraid to go to bed at night because I feel like Im going to just stop breathing.  I saw my neurologist last Thursday for programming and he changed the settings a little.  He said this is normal, when they fix one thing (my hands) the brain is still fighting and it could move to a different muscle group.  He didn't want to change the settings too much because he didn't want my hands to curl back in.  I can understand this but the breathing thing is starting to worry me. He said he would continue with programming this week.  We'll see how it goes. 

The dystance4dystonia walk is still on for May 19th and the registration page is being changed a little.  It should be done soon and I will post it again.  There will be 3 different registration options: $25 for one walker, $60 for a family or you can raise money and not pay a registration fee.  Hope to see you all there!

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