 |
|
|
|
Tell us what you think >>
Selected submissions will be posted here regularly, so visit again to read more comments.
1/31/07
Iris Gross
I was aware of Dystonia because I regularly listen to the Diane Rehm show via wamu.org. I wasn't
aware of the larger problem of dystonia.Every month, Diane leaves to take Botox injection in her
vocal chords so she can speak better. After the film, I found myself wondering why Botox wouldn't
help some of these people as well.
I felt for the spouses and significant others of the featured people, particularly the wife of the
ex-coach. She seems to have borne the brunt of his frustration, and he seems to be a challenging
personality to start with. The husband of the spastic lady, I have to say, has a heart of gold, and
a will of steel, though, because as his wife even admitted, there aren't a lot of people, myself
included, who could be with a drooling, spastic wife out in public and not be ashamed. How do they
deal with the staring and comments! He should write his own book and give us instructions in
compassion!
I was left feeling enlightened, but sad, after seeing this film. It's sobering to think of the
hundreds of thousands of people who are living with this affliction. I have had tremors ever since I
was a child, so I know what it's like to feel as if you can't control your body. I can hide my
affliction, until I go to handle a coffee cup or otherwise pick something up, because it only
affects my hands. I can only imagine what it would be like to be afflicted with something not so
easily hidden.
1/31/07
Susan Johnson
Boulder, CO
I have dystonia in ALL the muscles of both hands and arms. In 1967 I was hit by a school bus and
sustained a bad head injury. In 1973, my right hand became affected, and in 1983, my left hand and
both arms became affected. At that time I was diagnosed with essential tremor and residual nerve
damage in my brain from the bus accident. In 1997 I was finally diagnosed with dystonia. I tried
many medications and two series of three botox shots in each arm, to no avail. My arms and hands
have a mind of their own and the muscle spasms are SO painful, like someone is twisting my muscles.
Dystonia affects everything I do at every moment of my life. I felt empathetic toward ALL of the
people in this film! I have been asked at various times if I'm drunk, if I'm having a nervous
breakdown, if I'm on drugs, etc., and I know just how they feel! I thought this was a wonderful
program to explain dystonia to those who have never heard of it (almost everyone)!
1/31/07
I was diagnosed with vocal dystonia, finally, in 1998; at the University of Washington Medical
Center. My father had Parkinson's disease, and when my voice went out of control, I thought that I
was developing Parkinson's disease too. I was working at a hospital as a Patient Representative at
the time; but no doctors there had any idea what was going on with me! I would either seem to be
yelling or nothing would come out of my mouth at all! The Otolaryngologist at the University even
argued with his other advisers as to which form of dystonia I had.....abductor or adductor? They
determined I was an anomaly and seemed to have both conditions. I had to quit both jobs I had and
get on disability. Botox did not work for me; and taking pills turned my skin yellow.
The same medication is given for Restless Leg Syndrome, which I also have very bad! I was my first
thoughts that dystonia was very similar, if not a form of, Parkinson's disease. It is also my
thought that children suffering from autism and have trouble speaking may have this dystonic
condition. I have taken care of small children with autism who were able to speak if you worked with
them one word at a time; and, they need an extreme amount of love! One parent told me that he did
not see or feel love coming from his son; so he did not offer hugs and kisses back! This was a major
mistake! With Parkinson's; when the patient seems to become stiff and their expressions are
disappearing, the people around them think or feel that the patient (relative) doesn't like them and
has no interest in them! This is also not true; in fact, they are extremely needy of love and
attention!
1/31/07
Christian Taylor
Burbank, CA
In summer 2004, I began to notice my neck drifting uncontrollably to the right. As the condition
worsened, I saw doctor after doctor until fortunately one was able to diagnose my ailment: cervical
dystonia, a/k/a "spasmodic torticollis." Initial treatments were ineffective and by November I had
to take disability leave from work, with the pain nearing unbearable levels. Not to mention the
social aspect of things... as someone who had never before been confronted with a major health
problem, let alone a disorder that created awkward and obvious postures and spasmodic movements, I
was scared, horrified and ashamed to even leave my apartment for fear of being "exposed." My utter
lack of control was infinitely frustrating and contributed directly to depression.
Fortunately, with regular Botox treatments plus other medications, my condition has become
manageable enough so that I have returned to work. As for the social aspect, it can still be
embarrassing to be out in unfamiliar surroundings, and I am still reluctant to interact with people
I do not know very well. Bottom line, I have a very intimate knowledge of the pain and suffering
associated with dystonia. And I would like to take this opportunity to thank PBS, the filmmakers,
and the subjects of the film for bringing this little-understood subject a little closer to the
public consciousness. Outstanding, touching piece of work.
1/31/07
Denise Leto
Oakland, California
I often feel I have little control of my body. I have laryngeal, primary cranial and segmental
dystonia. My brain behaves like a fickle puppeteer manipulating movement arbitrarily and making the
symptoms impossible to predict or control. One reason why the public is less aware of dystonia, I
believe, is because its symptoms are so frequently misdiagnosed. The Media Action Group of the
Dystonia Foundation does an unbelievable job educating physicians and the public about the disorder.
Never, in any visual medium, have I seen dystonia portrayed so accurately. The disorder can lead to
such a stark and profound isolation one can feel marooned in existence. Mine was a long, gradual
retreat from the public sphere and before I realized how far I had distanced from the world. I
became locked in one dimension of myself: a bare, wordless, painful place.
Watching the film I felt something I very rarely feel: at home in this world. ÒTwistedÓ showed what
is otherwise so vexing to convey: the complex impact of a vulnerable body on oneâs physical,
emotional, social, familial and professional life. I experienced immeasurable empathy towards
everyone in the film. I also experienced a renewed interest in the procedures shown-as well as an
indescribable sadness. Though difficult to watch, this fantastic film was a welcome gift and will
hopefully contribute to a more widespread knowledge of dystonia. I extend my gratitude to the
filmmaker and to the people in the film whom I now consider friends in dystonia.
1/31/07
AnnMarie Cook
Stow, Ohio
I was drawn to Pat's story. I think because he developed the condition later and it was not genetic.
I have been diagnosed with dystonia for 8 yrs but I know it started long before that. I am now 37
yrs old. I felt/still do most of the time that I don't have control of my body and life. I haven't
found the right meds yet. I wasn't sure if I was mentally strong enough to see this film. I hope to
never get as bad as some.
1/31/07
Sheryl Ford
I thought the film was very captivating. I became aware of a disease that I had no idea existed. I
felt more compassionate for persons with disabilities and the day to day struggles that they incur.
I also thought the film showed how persons/family surrounding these individuals were also effected
by their loved ones disease. Excellent!
1/31/07
Rose Kern
Morrill, Maine
I thank you so much for this revealing film about Dystonia. My beloved Aunt Virginia suffered from
Dystonia & I watched with a full heart to see what progress has been made for this disorder. My Aunt
was one of the first patients that Dr. Cooper experimented on back in the 60's. Like Shari, she too
lost her ability to speak after several brain operations. I always say that she died of a broken
heart as she was never quite as joyful about life after losing her ability to speak. She was & still
is one of the most amazing & beautiful people I have had the great joy to know. I wish I could write
to Shari & tell her that I think she is the second most amazing person I have seen since I lost my
Aunt in 1981. What a spirit. All of the people in the film are truly remarkable people & I applaud
them all for keeping on with the hand that life has death them. Thank you for educating the public
about this much ignored disease. Sincerely, Rose Kern
1/31/07
Lauren
Beautifully done doc. Congratulations. As a person also working in the profession of non-fiction
film and TV, I know the importance of capturing telling moments on camera. That moment for this film
was the scene in which Remy demonstrates the device that can turn her "on" and "off". I kept
muttering "Oh my God" out loud at the site of this. I hope Remy continues her film making. She's a
great character.
1/31/07
Max Hunt
Muncie, IN
C'mon people! There have to be some dystonia patients out there that saw Twisted!! Lets make this
site rock and roll!! I'd love to hear people's reaction to the program. I work for a PBS affiliate
and have dystonia. I was very excited to see such a well-done film make it onto the national stage.
Let's hear it for Laurel!!
1/31/07
I missed the film last night but will set the VCR to record it Thursday, February 1 at 3:00 a.m. I
have dystonia & am so thankful you are informing the public. I went for three years with horrendous
pain and many mis-diagnosis until I went to
Mayo Clinic after seeing TV Dr. Tim Johnson tell of a lady with the disease. It is so misunderstood
so I thank you for the information you are giving the public.
1/31/07
Cindy Schmittou
Clarksville Tennessee
My daughter, Amy, has cervical dystonia. She is only 29 years old. We in our car stopped at a stop
sign and we were hit from behind, about 5 years ago. At first for a couple of months things were
o.k. Then, the twitching began and tightness in her neck is very difficult to describe. She is
constantly in pain. Her personality has changed. She is a trained Marriage and Family Therapist by
profession, but on this account "Physician heal thyself" doesn't help much. She is married. No one
understands the constant pain. She wakes up through the night in severe pain. She is now beginning
Botox. We live close to Vanderbilt University so the neurologists there are working with her. I was
very glad to see this show. I cannot thank you enough. My baby is not alone. Thank you.
1/31/07
Alissa Demers
Dover, NH
I myself used to be this 'twisted' little puppet...controlled by the pull and tug of my muscles. My
Dystonia symptoms started when I was about 3 or so. My left ankle would pull in tight and painful
when I tried to walk to far. Then it began with both legs. It snowballed from there. By the time I
was 13 the pulling and cramping had control of my arms, my hands, and my neck and hips. I could look
generally peaceful in the morning (though I still couldn't walk that far) but in the evening I had a
lot of difficulty performing the simplest of things. I was seen by about a hundred doctors by then.
They diagnosed me with a mild form of Cerebral Palsy. Underwent a lot of treatment for that. It was
hard to explain to people why I could look so 'normal' in the beginning of the day. Then finally at
15 I was diagnosed with Dystonia. They didn't know what they could do for me at the time. It had
come down nearly to using a wheelchair. The pulling and tension was really terrible and painful and
it I began waking up that way.
So I suffered for another year. Then a doctor had read that they were treating patients with a
Parkinson's disease pill (leva-dopa-carba-dopa. I took one half pill that afternoon and a half the
next morning. By noon I was FREEEEEEEE!!! Major turning point in my life. Like when Remi found the
brain stimulator. Those little yellow pills unlocked my body and I have been symptom free for 13
years now. One thing I wished so much in Laurel film was showing a case like mine. I read about a
lady in the Enquirer years ago. She had the same type of Dystonia as I have. She had suffered well
into her thirties and become wheelchair bound. The doctors gave her the levo-carbo and she rose from
her chair symptom free.
I am thrilled that brain stimulation can affect the symptoms in some so dramatically. But brain
surgery is a serious and potentially dangerous thing. And if there's one person who could take a
pill instead I would hope that this option wou8ld be available to them. The reason I say this is
because it took 16 years for the doctor to help me. The truth is I didn't have to suffer one day.
I'm not angry. But I wish that more doctors knew about it. If there are only 300,000 people who are
know to have dystonia I can understand why its not common knowledge. But with that said with those
who are afflicted it can be totally devastating and everyday painful and torturous to get though. I
thank God ever-single day for my little yellow pills. To tell you the truth I cried a lot through
the film. Brought back a lot of memories, and deep empathy for those who are living with dystonia. I
am so excited about what this film could do. If there is anyone who has questions for me relating to
my story feel free to email me. alissa9376@yahoo.com
1/31/07
1. Yes but not to the extent Dystonia has over people. My experience is pain and being sick and
tired of the daily limitations pain brings.
2. I'm not sure. I've never heard of it before watching the program. I have seen people with a
twisted body before but I either thought it was a form of cerebral palsy or just a birth defect.
3. I felt tremendous empathy towards all of the people in the film. The woman who had the remote
aimed at her chest and within seconds she reverted to a twisted form, that broke my heart. The
coach, I could feel his frustration and sadness with the turn his life has taken, the newlywed woman
was inspiring in her normalcy. Good for her, she had a very healthy attitude and she deserves all
the happiness coming her way. I think they can all be of help to each other, a support group of
sorts and I wish them luck with the new or latest medical treatment.
1/31/07
Jen
This show was amazing. My mom has had dystonia for 19 years and I've seen her suffer and be in a
tremendous amount of pain. She tried various treatments when no one knew what it was and now she has
the Botox shots every three months. This documentary brought a whole new light and awareness of
Dystonia for me. I've always respected my mom and for what she has gone through, but this puts it in
a whole new perspective. Few people know about dystonia because it is not a condition that is talked
about a lot. I think a huge number of people don't know what they have and doctors don't know how to
treat it, let alone diagnose it. I admire everyone in this film. What amazing people! They are all
inspirational and fantastic individuals. Thank you for sharing your stories. I feel blessed and
honored to have seen a glimpse into your lives. Thank you for making this documentary. Thank you for
bringing Dystonia to the surface and making people more aware.
1/31/07
Thomas McGugan
Jacksonville Beach, FL
Laurel did an excellent job in capturing the heartbreak, and triumph, of dystonia. Having Focal
Dystonia, I was able to identify with the emotional roller coaster one rides while dealing with this
disease. It's been a while since a TV show brought tears to my eyes. Great production Laurel and
thank you and PBS for sharing our story.
1/31/07
Good job PBS, for presenting this film. It was moving and remarkable to watch. It takes us back to
how science is dealing with these sad issues that are affecting the lives of many, and we need to
understand how to work harder to figure out what to do about it. But I'm so happy to watch great
programming that your station has to offer. Thanks for doing a great job.
1/31/07
Arcata, CA
Absolutely superb! This film is well-polished, has a nice flow in following the journey of each
person featured in the film. It's an all around informative and inspiring film. Thank YOU! And to
Shari-Your spark and zest for life is a life lesson to all people, "twisted" or not.
1/31/07
Karen Lauderdale
Carson, Ca
I would like to say thank you so much to all involved with this film. I was diagnosed with cervical
dystonia almost two years ago. I try so had to explain to people and family why I spasm like I do,
but it is so hard when I really don't know myself. I will have close friends and family watch your
presentation; I hope this will help them understand. I have been with a wonderful web site for about
a year now that has been so supportive because we all face the same challenge. It is NSTA. Again
thank you so much....Love to all......
1/31/07
(Mr.) Robin Wonder
Long Beach, CA
I was very touched by "Twisted." At one point, it was mentioned that dystonia is in some way similar
to the cramps one can get in the legs and hands. I get such cramps, sometimes quite badly. Years ago
someone told me to take quinine for those cramps. I have used it ever since. Whenever I get such
cramps, I take one quinine capsule, and within one half hour the cramps are gone. It seems overly
simple for such a complicated disorder, but has there been any research done to see if quinine could
help these people?
1/31/07
Danny Pitcher
Colorado Springs, Colorado
I am a 60 year old retired elem. teacher and coached high school football before I retired. I've
never heard of dystonia before, and I was overwhelmed by the outrageous emotional strength and
positive attitude by all the people in the film. While they all were enormously strong and filled
with a mind-boggling will, both Pat and Shari particularly touched me. Pat-You are one of the
strongest, adventurous, and most dedicated men I've ever seen. When you offered your wife a way out
of your marriage saying, "This is not me", I was heartbroken because you are a wonderful man
Shari-You are one of the most positive women I've ever seen. At first, I saw you struggling to walk
and talk, and felt sorry for you. At the end, I saw your heart and it's good, then felt respect for
you. Both of your spouses are lucky to have you in their lives. PatÕs last statement, "I'm not
giving in!", was on excellent way to end the film. I know that the statement applies to both Pat and
Shari. Somehow, maybe at one of your gatherings in the future, I would consider it an HONOR to meet
both of you. Thank you to both of you.
1/31/07
Ed Matushek
Chicago, IL
Laurel's film reminded me how fortunate I am that I have only a focal dystonia, rather than
generalized dystonia. As a trial lawyer and public speaker, I had long taken my voice for granted.
Then at age 39, vocal cord spasms cut off vowel sounds when I tried to speak. I related to all the
people in the film -- the frustrations with an impaired ability to communicate, the resultant stress
it placed on relationships, the misunderstanding of others of my condition, the years of
misdiagnosis and ill-fated attempts at a cure, and the marvel of my colleagues that I never let it
affect my drive to continue in my profession. Lucky for me, once correctly diagnosed, my spasmodic
dystonia responded well to periodic Botox injections in the hands of a qualified physician, Dr.
Robert Bastian. Although Botox is not a cure, I have since been able to function normally in the
intervals between injections, and have enjoyed considerable success in my profession for many years
thereafter. Hopefully, this film will improve awareness so that others who suffer from dystonia will
receive proper treatment to regain a normal life, and enlighten others who may encounter us when the
condition manifests itself so they have a better understanding of who we are, and what we face.
1/31/07
Gilbert, AZ
I watched this and wept and felt many emotions watching these 3 people share their lives. Watching
them being trapped in a body that was not in control gave me a sense of panic. But when I saw the
results of the surgery, I was overwhelmed. Watching Remy share with us how her implants completely
offer her a whole new life. I am waking up tomorrow and I am going to love my life. Great segment!
Will never forget it.
1/31/07
Wheaton, IL
I just happened upon your movie "Twisted" and couldn't turn it off. It is a very "moving" story
about "movement" or maybe the lack of it. Either way, as a practicing Speech Therapist for 20 years,
treating kids with all kinds of disabilities I found myself educated and concerned. I too feel the
awareness of this condition is still quite limited. I encourage and applaud all of the people
involved in this film - especially those brave enough to educate us with their lives as they lived
them - onscreen! How wonderful it is to see the hope that science can bring to people "locked" in
their bodies. Many of the children with which I work are "trapped" by some disease. But every day I
get to see a sparkle of personality or witness growth they were told could never occur. "Twisted" is
a story about real people with real strength and courage to fight for the life that so many of us
take for granted. Thank you for a fabulous journey and blessings to all involved!!
1/31/07
Anne Behrens
Stilwell, KS
I was so moved by Pat and his great energy and passion for life. I couldn't sleep without knowing
what happened to him since the video. I hope so much he can improve. It was so hard to watch the
film and see him loose the bloom of health and optimism he had in the beginning. I often feel out of
control because I am a pessimistic person but watching Pat mad me realize that I do have the choice
I just can't seem to find the will where he has the will and passion and wanted so much to give his
life and those around him so very much of his own joy and life energy. I hope so much that he really
does continue to improve and that those around him get him back in full. I enjoyed being around him
for even the hour of the show and well as the fellow with diabetes-what an amazing, patient and
loving man. Good luck to you all, Anne
1/31/07
Sarah
Chicago, IL
I just finished watching your show on PBS. I was absolutely enthralled throughout the entire
documentary. I wanted to especially let Shari Tritt know how inspiring and wonderful she is. I do
not have dystonia, but I have been learning a lot recently about people who are struggling with
physical disabilities and the daily struggles they face that so many of us without physical
disabilities are unaware of. I was so blessed by her sweet soul and strong spirit while watching the
program. I just wondered if you could let her specifically know that I wanted to say she is a
awesome woman who has inspired me, a person without a physical disability, to better understand and
learn from those with one. Her story has taught me a lot. Thank you Shari, and I hope you continue
to enjoy the fullness your life with your husband who is so lucky to have you as his beautiful wife!
|
|
|
