Dystonia Neuro Movement Disorder

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108 Comments

Comment by Jen 1 day ago

Thanks to all for all your thoughts, prayers and support!

Comment by Jen 1 day ago

Thanks Canary. I really appreciate your thoughts. I'll be updating about my surgery on my caring bridge site for those who want to check it. You have to sign in to caring bridge first and then you can read and post. http://www.caringbridge.org/visit/jenelle

Comment by Canary3 on July 3, 2009 at 2:09pm

Dear Jen, You are so courageous! I have learned much from reading your comments,and pray for your quick recovery from your upcoming abd, surgery. God Bless.

Comment by FelicityNexus on July 2, 2009 at 5:44pm

Beka i really enjoyed the first book I'm moving on and i was able to read the whole thing : ) !!! Thankyou

Comment by Seafrontanne on June 24, 2009 at 11:50am

I have tried for attendence allowance for nearly fifteen years and have always had to appeal.I am appealing to the DHSS tribunal at the moment for the umpteenth time but so far I have always been turned down.It's about time that Dystonia was taken more seriously because the quality of life is very disabilitating

Comment by Seafrontanne on June 24, 2009 at 11:30am

I have suffered with Spasmodic Torticolis Dystonia for any years and receive Botox injections every three to four months.Sometimes I get a little relief from the pain but the condition never seems to get better.It has got to a stage where I cannot go out on my own because I cannot turn my head to the left.I am using crutches around the house and when I do go out I am assisted by my husband.If I did not use the crutches I would be off balance.I am stuck in the house all day long and really do miss the shorts walk I use to take along the seafront.Now I find it very difficult to co-ordinate my legs and they are very weak.
It is good to know that there are others out there with similiar medical complaints.

Comment by Jenn on June 19, 2009 at 3:49pm

HEY guys!! deadline has passed. Thanks to all who emailed in about the dopa-responsive news story.. It sounds like it will be a good one :P I'll post the link when its ready !!

Comment by faith on June 17, 2009 at 10:22pm

Beka,
The poetry you posted is trully precious
you are an angel
thank you

faith

Comment by beka on May 6, 2009 at 6:48pm

For ALL :
Butterfly Girl” by Jaylene Johnson:

“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place

I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know (that) you’re a precious miracle
Suffering transformed to something wonderful
All the things that had you bound have only made you stronger
So trust me and fly
Trust me and fly

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know you’re beautiful
You’re beautiful
Don’t you know you’re beautiful”

From the album, “Finding Beautiful”

Comment by beka on May 6, 2009 at 2:05pm

"Man is composed primarily of water and as water, flows towards the path of least resistance". I, on the other end, think l am made of not only water but of fire and backbone, and I do not always follow the path of least resistance. Sometimes I discover new ground, sometimes I stand my ground and sometimes I hit the ground.................................and run with it.
Quote by ???
beka

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