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Tell us what you think >>
Selected submissions will be posted here regularly, so visit again to read more comments.
1/31/07
Joe Campagna
Chicago, IL
Laurel - I work with Shari's sister Beth, and was very moved by your work and the profiles of those
involved. All to often we jump to conclusions when looking at someone not "normal". You did a
wonderful job of showing the progress of available treatment options and should be applauded for
your touching stories of the people living with this condition. All the best to all in your film and
those dealing with Dystonia on a daily basis...
1/31/07
Frankfort, KY
I just watched "Twisted" and was so happy to see the positive results for so many. However, the
limited success of Pat Grogan's treatments saddened me. I noted in his update that he has shown some
improvement since the taping. I would be interested to follow his progress. Pat has such a charisma
about him that it makes me want to be his cheerleader.
1/31/07
Vivian Wagner
Mahaffey, PA
My daughter, my husband and I just watched TWISTED. My daughter, Kate is 19 years old and was
diagnosed with dystonia when she was 12. She was born with Peters Anomaly and was diagnosed with CP
at about 4 months. She is an intelligent person but can do very little for herself. She struggles
every day with a desire to be a part of the world and be happy. We would like to see one other
person who moves like she does because we wonder if she DOES have dystonia. How can you be sure it
is dystonia? She did not want DBS but since seeing your program, she wants to know more about it.
Thanks for the program and encouragement.
1/31/07
James Abrams
Johnstown, PA
Many thanks to Laurel Chiten for bringing dystonia to the attention of the general public. I have
focal dystonia in my hand and in my vocal cords (dystonia) and they have been a curse, but nothing
like the challenge that generalized dystonia presents. I always think that focal dystonia rains on
my favorite parades, in my case playing music, writing, and teaching. Like so many other musicians
with dystonia, I have tried every treatment under the sun but to date none have proved to be
successful. I started with dystonia in my hand ("writer's cramp) about twenty years ago, and then
developed dystonia in my vocal cords ten years ago. I should mention that I am the middle-born of
triplets. We are 54 years old. I have an identical brother and a fraternal sister. Neither have any
traces of dystonia, and I conclude therefore that what I have is secondary dystonia. Once again,
thanks for putting dystonia on the radar for the viewing public.
1/31/07
Jim Ross
Charlottesville, Virgini
I've just watched "Twisted" and I wanted to say thank you for producing and airing the piece. I
don't often view television so I am very thankful I happen to catch the showing. The stories where
compelling and motivating. I too have dystonia. My story parallels Pat's except I have had much more
success. My heart goes out to him and the others. I hope to find a way to share ideas and hope with
them.
1/31/07
Teresa White
Louisville, KY
My father, who will be 83 in March 07 has suffered from generalized dystonia for at least 35 years.
Unfortunately, he was not diagnosed until 7 years ago. Immediately afterwards, Botox was tried one
time with no success (actually my father became much worse within 24hrs of shot and hospitalized-my
family was convinced the Botox was the cause), regardless it was not for him, his age was against
him at this LATE diagnosis. I have seen all the familiar symptoms described in tonightÕs "Twisted"
program and appreciate all the participants in making this great/informative film to show 1st hand
the many different facets and stages of this horrible disorder.
I definitely related to and was very empathetic to all people in the film. With all being
considerably younger at their diagnosis, I pray for them that there will be great/rapid advancement
to assure them more comfortable and productive lives.
1/31/07
Jason Royalty
TN
My wife and I so appreciated the program 'Twisted' tonight. She was diagnosed with Spasmodic
Torticollis (a type of dystonia) 4 years ago. She related with everything that was on the show and
was touched with the personal stories, victories and defeats. Thankfully she has had little problem
in the past few months, but those first few years were trying at times. We have three small children
(boys!) and it has been challenging to say the least. We hope and pray that she has seen the worst
of ST. She has been able to help people out in public that she has come in contact with who perhaps
have not been diagnosed properly and that has brought great meaning to what she went through. Thank
you for the program!
1/31/07
Carbondale CO,
My name is Paul and since age 8 I have had DYT1, My mom let me know that there would be a film
airing on PBS on Dystonia, so I thought I would check it out. I just want to say that, just from
watching the preview, I feel that for once in my life, I know there are other people out there who
can understand and relate to what we have had to deal with. Thank you for taking the time and energy
to do this, I think it's great.
1/31/07
Melissa Jackson
Sover-Soxcroft, Maine
I have been searching for information and have been to a neurologist and movement specialist for the
last 5 months. I have had cat scans, MRIs, blood work and to no avail has anything showed up in
these tests. So many of my symptoms are similar to those you have described; jerking movements
uncontrolled arm and leg movements fingers and hands twisting eyes rolling speech problems slurring
dragging words difficulty getting control of what I am trying to say out it is like it gets stuck in
my mind I have pain in my lower back sometimes I have difficulty walking its like my body goes weak
and I dip when walking I become physically exhausted and need to sit because I feel like my legs are
going to give out. When this happens I feel drained of strength. I usually need to take a nap after
this happens. My movement specialist is sending me to Boston medical center on February 12th to see
dr. St. Hilaire.
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