TWISTED


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Read the Filmmaker Q&A with Director Laurel Chiten to find out what you can do to help. Find out more >>
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07/25/2010
Ira
Hollywood, FL

For those of you who have posted here before or are new here, I just wanted to let you know that my priceless angel, my beloved Shari, died in a terrible accident in our backyard pool, her oasis of peace, on Saturday, June 5, 2010.

05/11/2009
LaDonna Teel

I have only seen clips of this film and plan to order it. I was informed of "Twisted" on a dystonia site I regularly visit. I am sincerely touched by all the persons involved in the clips and feel their pain as I have dystonia too. I most relate to the young athletic man that would display tremors when he tried to center his head. However, I have some difficulties similar to all three. I developed dystonia after a head/neck injury in 2007 and I still struggle daily with the handicaps and pain of this disorder. My prognosis is most likely long-term due to my age and the severity at diagnosis. My life has been altered to the point where I no longer remember the old me. I do know she was capable of doing most anything, least of all hold her head upright and pivot it left and right, pain-free. Although I haven't seen the film yet I hope the role of insurance and treatment was discussed. I would like to inform as many people as possible that there is a great struggle for persons with dystonia to receive the necessary treatment due to denial by insurance. Most have to fight tooth and nail for the needed, effective, therapies and medications because dystonia is often long-term and costly for insurance. Also there are still those who foster the stigma that dystonia is more a psychological disorder rather than a physiological one. I hope that all who see this film will recognize the reality of Dystonia so that the word is spread about this little known disease. It's proven by the past that along with public recognition and support comes more pressure for insurance companies to do the right thing.

04/25/2008

A few months stumbled across "TWISTED" on sky anytime television. i was mesmorised the documentry and recorded it. since then i have watched it 4 times. I couldn't believe how shocking dystonia is, and found the film so heart warming. I have used your documentry as an influence towards by ENGLISH A-level, whilst writing a monologue, the character i have created is very much based on a mixture of the sufferes in TWISTED. In addition to this i have created a performance towards by A-level Drama. Everyone who i have told about dystonia is so shocked that this disorder is so covered away from the public eye. i feel it is important to increase the awareness. Best wishes to all. Alicia Barber, 17.

03/27/2008

The film and its stories were very well done, if at times heart-wrenching to watch. I felt a special connection with Pat Brogan's experience. Maybe it's because I love basketball, I don't know. My point here is simple: the depth and quality of character Pat showed in "Twisted" was beautiful and inspiring. He is now a role model for me. Thanks, Pat.

02/04/2008
Miriam Erez
Ketura, Israel

Way to go, Chiten. An eye-opener. You have contributed to the edification and compassion of "the rest of us".

01/15/2008
lharris
new york, ny

Why didnt someone interview Joan Harris who was Dr. Cooper's "only" successful brain operation patient. She has appeared on 60 minutes and unfortunately has fallen on very hard times, not just reoccuring dystonia but effect of a terrible car accident.

10/24/2007
Sue Douglass
Albany, California

I was pleased to stumble upon tonight's airing of Twisted. In 1976 I was doing a research paper on Jewish genetic diseases and reporting on it to a group I was in. A newcomer sitting in the back of the room began to laugh. "I have a Jewish genetic disease," he told me. That's how I first met Neil Marcus. Here is how Neil describes his situation in life in his play, STORM READING: "Playwright Neil Marcus has flourishing dystonia, a neurological condition which allows him to leap and soar and twist and turn constantly in public, thus challenging stereotypes of every sort and making him very interesting to watch and sit next to during lunch hour. It rides him like a roller coaster at times." I recommend to everyone interested in dystonia to Google Neil - he is out there taking on the world every day.

Kate Fuller
Felton CA

Thank you for such a beautiful and uplifting film. My 83 year old father had spinal surgery about 5 years ago. Since then he has had episodes of severe pain in his foot. My dad is not one to complain and remains upbeat and active. He has been to the doctors who tell him to return when he has the pain. The pain is so bad, he says if he had a gun he would shoot himself. I'm wondering if it is dystonia. He lives in a small town in Oregon. He has been to see a neurologist but that did not help. This is a man that drives a jacked up yellow truck with flames on the sides! I love him so much but don't know how to help him at this stage in his life.

emilie
London, UK!

How brilliant to find a board so lively with dystonic people who are getting on with their lives and supporting one another! I have had dystonia for 8 years. It has gone through many very different stages. At times, I have been laying down in powered wheelchairs and at times I have been walking unaided! It is good to know that research is progressing but more importantly, attitudes and hope are. My dystonia makes me feel possessed sometimes, it travels around my body and I don't know where it'll attack next but I also know there are ways I can help to manage it. Most people here in the UK haven't heard of dystonia so I hope we can spread the word here too. Thanks again! x

6/1/07
Sindy Brown
Stillwater, Oklahoma

Thank you so much for this Amazing film! My daughter, Abbey, is 14 and has secondary, generalized dystonia. We were all inspired by those in the film. Pat, Shari, and Ira were the ones we truly identified with. We are considering DBS after trying everything over the past 11 years. Pat's honesty has helped us to see DBS is still not a cure- just another effective treatment for some. Shari has given hope and inspiration to Abbey. Abbey is also non-verbal and uses a communication device to do much of her talking. However, since watching the film Abbey has become much more verbal and seems even more at peace with who she is. Thank you to all who were involved in this film. It has been a healing balm to our hearts.

5/31/07
Tonia Hasik

I heard about this film while doing one of my weekly stays in the hospital for pain control from one of my nurses. She printed all of the material from this web site. I had plenty of time to read it as we all know. I have seen 3 neurologist numerous other Dr.s in different fields. The one common thing they keep saying is this Dystonia. The spasms are so painful and sometimes surprising. I have had them so strong that I literly black out from the pressure in the back of my neck and skull. I have made the round with the medications for the past year and a half. No sucsess, but the Dr.'s don't seem like they know what to do around here and I feel like they are just giving up. The pain in my neck, shoulder, arm, headaches that never want to go away. I used to be a Firefighter/Paramedic..... I want to be able to go outside and not have to worry about having a attack and be comfortable around my friends instead of being embarased. I have read alot about this monster!! I just wish I could get some one to help me.

I am currently going to U of C Movement Disorder Specialist. They just keep running the same scans over and over again (4 EEG's in last 4 months)not counting MRI's & CT's. My problem is that I don't know how I got it and they just keep sending me more pills. I flushed a 2.5 Gallon bag full of medication just the other day; they were all the ones they have tried and didn't work. They have told me it is all psychological, I am seeeing someone now just in the last month for that, she doesn't fell that this is how it started, but it has gotten to the point I do enjoy talking to someone about it. I cry my self to sleep everynight because of the pain and just someone to believe me and help instead of being pushed away!

Please someone help me. I want to go back to saving lives not being a patient all the time. I look like a drug addict from all the IV's and blood draws, it has reduced my strength on me right side down to 35% I was in perfect health..I am to the point of trying anything even denervation, but that just seems so extreme to me. I want to go back to being outdoors, playing sports and having fun with my girls (12 & 4), but it just doesn't feel like a possibility for my near future.

I would love to hear from anyone with help or suggestions I am running out of options it feels like. I have been thru Therapy,injection,medication, even tried chinese herbs and accupuncture. Each one would work for a week or 2 then here it comes back. It affects my right side and my voice box,tounge, and jaw. My voice has changed and slurrs at times, my eye gets fuzzy and my hearing has deminished on the right. I am so mad cause all I want to do is get better.

hasik0910ff@comcast.net

5/2/07
Ed Cwalinski
Pittsburgh, PA

I thought the film was great. I had dbs for dystonia and felt the grief that they were going through. Before dbs i didnt want to live anymore. I am so happy for the dystonia community that this was broad casted on national tv. I know Remy and Peter. I met them at the Miami Symposium in Nov 2002. I felt a strong connection to the film. I also cried. Bring back bad memories but was also glad that dbs was able to help. It is a remarkable surgery and can only get better over time. I am currently 25 years old now had dbs 7 years ago and it gave me my life back.

4/3/07
Jackson Hole, Wyoming

I was thrilled to see "Twisted"! It provided me with the perfect explanation for what was happening to me. I have been treated for pain and spinal disorders and had multiple surgeries following a near-fatal auto accident. I am grateful for the insights which "Twisted" provided because after a decade of misdiagnoses, I feel like I finally have the right answer. Bravo to the filmmakers and PBS for shedding light on this little publicized disorder!

3/22/07
Sally Pickering
Winter Park, FL

Thank you for this. My father suffers from dystonia as a result of an auto accident in 1989. He was reduced to Botox injections and tons of medicines which rendered him wheelchair bound. We contacted the Movement Disorder Clinic at the University of Chicago and he had the DBS implanted two years ago which ablated 95% of all his involuntary movement. Thank you Again.

3/22/07
Abbie Brown
Santa Fe, NM

Laurel, thank you for making this film and clearly being a lifeline to so many ST'rs out there. The film was so sensitive, informative and a work of art. Please produce more! Abigail Brown, Director Spasmodic Torticollis Recovery Clinic

3/22/07
Jennifer Price
Santa Fe, NM

Congratulations Laurel on making a powerful and moving film, and thank you, Shari, Pat, Remy and the others for all you have done to spread awareness. I got cervical dystonia four years ago, and have been symptom-free for almost two years now since I went to the ST recovery clinic in Albuquerque, NM. At first I tried botox and oral medications and neither worked very well for me. In desperation I went to the STRC clinic before trying surgery, and after about a year of doing the suggested exercises and massage the pain and pulling started to ease and eventually stopped completely. So there is hope!

3/22/07
Barbara Lach
Oak Forest, IL.

I have been a nurse actively working for 38 yrs. i have never come across a patient with dystonia and i have worked a big intercity hospital, icu and many other areas. in 1996 i filed for divorce. it was bad and my 4 kids were upset about it. they wanted me to stay with my husband. you talk about stress. i started to notice my head turning to the right. i had been having much pain in right neck and shoulder for which i tried a chiropractor with no good results. i went to my pcp and she sent me for physical therapy. cervical traction felt good but the pain and head turning still persisted. i learned just on my own about touching my face and it could kind of stop my turning unless i was very stressed. my mom didn't know what was wrong and said DO YOU HAVE TO KEEP HOLDING YOUR HEAD. i was embarassed many times as anyone with dystonia knows. the stares, wispering, comments. i was diagnosed by a neurologist in 1996. had 2 rounds of botox with little results, so i stropped. had more physical therapy and a few massages which helped the pain a little. restarted botox for another 2 yrs with some results, then quit when spasms were worse. My son got a sports therapist, young guy in late 30's and i was 55. he did deep tissue massage on back shoulders and neck. it was usually very painful. after about 2 months he told me he thought i had weird bones in my traps but he found out they were muscles. i got massages weekly for several months and then went to 2 weeks. my pain has been reduced but i still have spasms. i will get massages the rest of my life unless i can find a treatment for the spasms which still cause the muscle tightness. my therapist has recently stopped seeing me. he lives an hour away. the pain came back so bad in my neck, back hips. the spasms effect your whole body. i now go to a therapist which is helping with the pain, massages. i tried artane for the last 4 months which seemed it helped a little with spasms but my mouth was so dry and i kept biting my tongue. anyway i was so glad i was surfing the channels and caught twisted. i want to get involved with a support group. thanks so much for the show. i thought i was alone. thanks barb

3/13/07
Grand Rapids Michigan

The film makers word in the opening of the show stopped me in my tracks. Her words were saying exactly how I feel. The most frustrating thing is to feel this way and have no answers. I have had tremor in my head, trunk. Spread first into my left hand and then my right. Now legs and feet shake. Muscles twist and jerk. My body is constantly fighting with itself. I have seen a couple of specialists over a four year period, but no diagnosis. My hope is that this film brings more attention to movement disorders and the need for more funding and research. Please pass on my gratitude to Laurel Chiten.

3/5/07
Dianne Kunzman
Boise, ID.

I only hope this film airs again. My dystonia is passed down. My oldest son has "writers cramp" and I have only recently found out my cousin has it also. Mine, however is CD, the old head tremor. Oh how fun! I feel like Pat, isolated, living in PJ's. No husband anymore. BUT..I have my service dog. It's amazing how much he helps me. I would recommend this to anyone. When you feel like Pat & I do, you can turn to a dog and a non-conditional love. I can't reinforce this enough. I want to take this film and send it to everyone I know and let them know the frustrations I go through day by day. Going grocery shopping is a chore. You can buy them on-line, but they don't accept food stamps.
Us with disabilities are usually poor. We didn't want to be this way. We are smart and have educations , but can not function in a world that doesn't fit us. We shake, we are thrown into a world that is boarding on acrophobia. At least that is me. So sorry to pour my heart out here. Anyone feel free to e-mail me @ the e-mail address boisebaby2@yahoo.com.

3/5/07
Misty
Binghamton, NY

YOUR FILM SAVED ME FROM YEARS OF MISDIAGNOSIS I can't thank you enough for making this film. On January 28 of 2007 I began "shaking"....my legs, my arms, and my head. We called the ambulance and I went to the first of three ER's that I would visit within a weeks time. I left with completely normal CT's and EKG. They told me it had to be a psychological issue. The next two ER's told me the same thing and referred me to a psychiatrist. (note: the psychiatrist wouldn't even see me as they were convinced that it wasn't psychological

Thank God for your film, as I watched it around midnight in the third ER I was introduced to dystonia. After researching this more, I realized that I was suffering from dystonia. About a week later I was able to see an osteopath which agreed with the diagnosis. Had it not been for the film I believe I would have searched for years to get help.

My dystonia has quickly progressed. There are times when I am normal, fully capable of caring for myself and my family. However, most of the time I am completely incapacitated. My family has had to move in with my parents. My dystonia effects every single part of my body. I am unable to move my arms and legs at times. My face distorts terribly. My abdomen contracts causing me to groan or squeal. Sometimes I can only whisper. At times I am unable to open my mouth. Several times throughout the day I cannot speak at all.

I would like to encourage those with dystonia to keep their heads up(figuratively speaking of course), as my head hangs as I write this. I have laughed a lot. My family and friends join along as I shake, groan, contract, and distort my body. Laughter has brought me through so far. I see it as a gift at times, as I am able to encourage people around me to appreciate life. God is blessing me through this trial and I trust he will for those of you out there that suffer as I do.

If anyone would like to talk feel free to e-mail me.

2/23/07
Leigh
Wheeling, WV

Thank You! My husband suffers from cervical dystonia. He developed symptoms after an injury nearly 15 years ago. All of the stories were touching. My heart goes out to Pat Grogan. Like Pat my husband has experienced the same pain, emotions, and struggles. By sharing his story my husband no longer feels so alone. My husband has tried many medications, physical therapy, pain clinics, botox, etc with no success. His faith helps him get through each day. Good Luck and God Bless to all involved in making this film!

2/23/07
Anita Bailie
Charlottesville, Virginia

Thank you to Lauren Chiten, and all the participants for sharing their stories of dystonia. My daughter has secondary dystonia, generalized, due to a more rarer disorder, glutaric acidemia type one. I think I could relate to everyone in the story and at the same time they told me things I needed to hear that she can't say. Pat's frustration I see on my daughter's face. Shari's story and her parents story made me both tearful and hopeful. I too am a mother who is relentless in the search to help my daughter

2/23/07
Jackie O'Sullivan
Hinsdale, NH

For a couple of years, my daughter (now 22) has been manifesting some odd facial tics, complaining of uncontrollable spasms, and severe pain. Doctors and a realy good chiropractor have not been able to help. Watching this film, a light dawned--she had a very bad fall, sustaining a moderate/severe concussion, got pregnant (another tale of medical horror) gave birth to my wonderful granddaughter in December of 2004, and began suffering the following spring. I have accused her of "posturing," but now I would be willing to bet that she is suffering from dystonia. I think that my chance viewing of this film might result in freeing my daughter from this painful, worrying, and as you know very scary condition.

2/23/07
Mary Hawkins
Farmingdale, ME

My teenage son, Ryan, decided to have deep brain stimulation to treat his dystonia after seeing a premiere of the film, Twisted, in Boston. He'd been afraid to have the treatment but the film gave him new hope that has been rewarded with improvement in his symptoms since his surgery this winter.

The people in the dystonia community should be recognized for how much support they've given each other even before the vehicle of this film. From a teenage boy and his family whom we met at a dystonia symposium and who bravely had the surgery before Ryan and supported us during our process to Peter Cohen, who was shown providing support to Pat Brogan in the film, dystonia sufferers give so much of themselves to others despite constant pain, increasing debilitation, and an uncertain future.

I am so grateful to the participants of the film and the filmmaker for telling the stories of those with dystonia and their families. While parts of the film were difficult to watch, sharing it is one of the ways more people will learn about dystonia and hopefully, more research will be funded from this increased awareness.

2/23/07
Sue Gordy
Portland, Oregon

Thank you for a wonderful, enlightening, and heart-wrenching documentary and to the dystonia sufferers who shared their lives with us. I have had cervical dystonia for 6 years. I went to a series of doctors before I was diagnosed, and suffered through various treatments until finally being helped with Botox and cyclobenzaprene.Although Botox injections in my neck are painful, I have my life back. I lost 2 years to pain and depression and not knowing what was wrong with me.

No one has mentioned cost. The Botox treatments I receive cost about $3,000 every 3 months. I didn't have health insurance when I began getting treatments, but NORD (National Organization for Rare Disorders) helped me obtain the medical care I needed. Dystonia is aggravated by stress, so it's a vicious cycle. Educating people is important, and this documentary has gone a long way in that regard. Thank you!

2/23/07
Barbara
Toronto, Canada

I was absolutely amazed at the integrity, the humor and the guts that each and every person "starring" in your documentary, "Twisted" possessed. Up until last night, when I was fortunate enough to see it on my local PBS station, I did not know that there was such a beast as dystonia. The film was not only brilliant production-wise, it was extremely educational. Thank you for opening up my eyes, and thank you to all who participated and allowed us into their lives.

2/16/07
Chris Clausen
Vancouver, Washington

I was hurt in 1982 when I was just 30 years old, in a auto accident at work. I have been living with my physical afflictions from this injury for 26 years without knowing there was a name for it. I have tried and once succeeded in killing myself, and had to have my heart re-started by paramedics. I wasn't supposed to live and I was in a coma for over 10 1/2 hours. I was not breathing on my own. When I finally came out of the coma, my family said that the doctor had saved my life and told me to thank the doctor, which I did. But when I told her thank you for saving my life, she told me she wasn't the one that saved me. She said she was just taking care of me and that God had saved me, I should not have lived. They were sure I was going to die that they had a pastor come in and ask my wife about donating my body parts and giving me last rites. I have had other strange things happen when I tried to kill myself. This is a very hard affliction to deal with. I deal with severe pain and discomfort 24/7 days.

2/12/07

I too have cervical dystonia. I noticed my neck pulling to the right when I was lifting some old boards from a house we were trying to remodel. I thought it was so strange when neck my kept pulling to the side. After a few weeks of this I decided to go see the doctor. He sent me to physical therapy which didn't work. I got sent to a neurologist who put me on artane and sent me to the University Of Iowa Hospitals. They put me on botox injections which didn't work either. I was sick and tired of the pain in my neck. That's when I went to Mayo Clinic in Rochester, Mn. and had denervation surgery done. I still had pain but it helped a lot. I was able to drive the car again. That helped for several years. Then I added a muscle relaxer and naproxen to my med list. Now I'm back at the University of Iowa Hospital. I'm now getting myobloc b injection which help a lot with the pain in my neck. I know what Pat was going through and I can relate all to well.

2/12/07
Alissa Demers
alissa9376@yahoo.com
Dover, NH

Since posting my letter here (pg. 2) I have recieved many emails from people wanting to know more about the drug I am taking and about the type of dystonia I have. As I said before, the symptoms I had began with my ankles at 3yrs old then progressed to include my legs, arms, wrists, hand, hips and neck. The best disciption was say if you make a muscle with your arms and hold it for a long time. It was tight, somewhat painful and exhausing. It worsened in my teens. Mental stress (worry, nervousness etc.) made it worse. I started taking SINEMET an anti parkinsons disease med. Levodopa carbadopa. I started taking one half pill in the morning one half at night (one pill total daily). I have been taking it for 13 years now. I have only had to increase my dose once. Now I take one pill AM one PM. I AM COMPLETELY symptom free. I am able to make my living as a florist (a sometimes physical job). I have heard my dystonia called 'dopa-responsive' dystonia. I was also given the name paroxsismal kinesogenic dystonia. I have read a few letters here that the person sounds like they have the same type of dystonia as I have, yet it does not say whether they have tried this med. I hope this answers anyone questions and that this info potentially helps someone. again any questions don't hesitate to ask.

2/12/07
Matthew Miller
Seattle, Washington

I have DBS for Essential Tremor and I just want to applaud you all for telling your stories. The more people know, the more money raised for research for cures. Thank you from all of us with movement disorders.

2/7/07
Tony Henderson
Booneville Mississippi

Laurel-I am very proud of you for making this film,it's hard to believe that a disorder this disabling can go virtually unheard of so long.I have had Cervical Dystonia for more than 25 years,and was only diagnosed about 9 years ago.I have been getting Botox ever since,but lately it's not working as well.It is my Prayer that this film will open eyes to the need for a cure for this most disabling disorder.Laurel I think you are the help all of us with Dystonia have been needing,you have brought this terrible disorder out of the dark,I thank you so much for that.God bless you...

2/7/07
Kathy
British Columbia

This film is fascinating. It gives life to a condition that no-one knows about. My husband diagnosed with dystonia almost two years ago. He is currently go through botox injections to no avail. This film gives us hope on the other options available out there. His doctor hasn't said much at all, so we really didn't know what he can do. I really want to find out more about this, and how I can support him and make it easier for him. I feel so helpless. I am trying to find a schedule of the showings in Canada. I really want his parents to watch it, so they understand what he goes through. No-one seems to think it's a big deal. Everyone seems to think that it's just a sore neck. I hope that this film is shown many times, so that all those who have missed, have more opportunities to watch it. Thank you Laurel, Pat, Remy, and Shari & Ira for sharing your stories.

2/6/07
Caron Penhall

The film "Twisted" was completely captivating. Chiten evoked every emotion in me. I was almost mad at her for introducing me to characters such as Ira and Shari who left me speechless, humbled and in love with the human race. I couldnt sleep after the program: I worried about Pats marriage, I was excited to know Ira and Shari, I was haunted by the courage of the small girl shooting baskets. This film has educated me on a disease I occasionally see in my city of Vancouver and assumed was cerebral palsey or retardation. It was a masterpiece of cognitive information with an affective story line. I have learned about dystonia and even more about love.Thank you, Shari and Ira. Thank you Laurel Chiten. Wow, you are ultra-cool. Sincerely, ( mother, teacher, wife )

2/6/07
Lorie M.
Hamilton, New Jersey

I first started having symptoms seven years ago. I went to a series of doctors, acupuncturist,stress therapy and anyone else who I thought might be able to help. After being told every thing from being crazy, to calm down, etc. My most frustrating part was getting people to believe me and understand it was not something only in my mind. This was for real and painful. The pain was as bad or equal to the reaction of people looking at me and not understanding. A doctor approached me after seeing me holding my head in an awkward way. He gave me Botox injections through an EMG machine. I had instant improvement. And it continues to get better with each session. I go every three months for the injections. I can not work but I am able to have a somewhat normal life. It is somewhat comforting to know that I am not alone.

2/6/07
Julianne Oliver
Pittston PA

Twisted has really opened my eyes. I had no idea about this disease and that makes me mad. I think if everyone were to watch this incredible film, then society would have a better understanding of people with disability's, and how to treat them. If this happened there would be more funding to help find a cure for this crippling disease. I am guilty of just grouping every problem under Mentally challenged. I know now there is more to it than that. Thanks so much To Laurel and the participants in the film, and i will do my best to help spread the word.

2/6/07

It just so happens, I turned on my television after reading for nearly three hours in my psychology reviews, to watch an amazing article of people with dystonia. I truly enjoyed watching the progresses of everyone. I didn't particularly like the part where Pat didn't want his wife to go with him (at one point) while he was at some point in the programming, where it didn't feel beneficial. Weren't the marriage vows, "For sickness and in health?" I am glad (or assume, anyway) they are still together. All in all, it was very informative and interesting. Remy's was very interesting, since a lot of people her age take for granted what they have and what Remy did, was so inspiring to others who may have it in our age group, to not give up hope. All in all, the video excellent!

2/6/07
David Berkowitz
Skokie, IL

Knowing Shari since childhood I can say has made me a better person and kinder to others.

2/5/07
Michelle Cliftonbr
Garrison, NY

I think Twisted was fabulous. I want to vote for it to receive more publicity and funding.

2/5/07

Your documentary was amazing and informative. While viewing, I couldn't help but be interested by Pat's specifically. Because his dystonia came on after traumatic origin, I was just wondering if he had ever heard of or tried upper cervical specific chiropractic, a specialized technique within the chiropractic profession. There are several forms of upper cervical specific (Atlas Orthoganol, NUCCA, Blair, Kale) that work only with the upper two bones of the neck in a very specific way with profound effects. Pat is so obviously very off in this area. The fact that it was of traumatic origin makes me believe that this may possibly help him. Please, please pass along this email and have him contact me. I would be ecstatic to help him find a qualified practitioner in his area. Upper cervical specific chiropractors have some of the best results in my profession.



2/5/07
Johanne
Lansing, Michigan

Thank you for this informative program. Pat's story touched me in particular and since then I have been praying for him. Keep us posted on his recovery.

2/5/07
Tony Taylor
Detroit, MI

Very nice doc on a disease, dystonia, I know I've never heard of. Chiten's strength it seemed to me was first a very good story and she executed it very well. She is also dealing with an area of people's lives that takes a real compassionate person to be able to communicate with them in regards to not "using" or sensationalizing them but to tell their story in a way that could possibly help others. Very brave people. The basketball coach said what my feelings would be exactly when he mentioned he just wanted to stay indoors and deal with it on his own. This is also an area (disease) that makes "normal" people feel uneasy and I feel its a shame but true how we all as humans tend to first judge and flee from such "differences". That Ira guy is amazing in the way you can just tell he has the ability to look past Shari's disability and see who she really is. On one level, for me, god hits me upside the head on many an occasion to remind me just how good I've got it and how blessed and fortunate I really am. My little life could be so much more of a tribulation then what it has been and I need to spend more time realizing and getting that. So I hope Laurel takes some consolation in the many hours and time she has spent on this film, knowing at the very least she has opened, once again, closed and sometimes narrow eyes. The greatest gift we as humans have is to give to others less fortunate than ourselves and to shed light where ignorance reigns. Those were very special people, those with disabilities that have great power to inspire others. She told their story in a beautiful way

2/5/07
Alan Owens
Ann Arbor, MIchigan

Sunday's showing of TWISTED alarmed me. I knew little about Dystonia. The cures or operations I am not surprised did not work. The "cures" were too mechanical. How can one love a machine? TWISTED addressed an old scholarly problem. All the patients were good students.

2/5/07
Jeanette Stremel
Westbank, B. C., Canada

Twisted was beautiful and Laurel did an awesome job. The movie was very enlightening as well as painful to watch the people sharing their stories; I cried for them. Shari is such a positive pleasant person, and her husband is so very supportive. My heart breaks for Pat and how he soldiers on, maybe with adjustments the dbs will eventually bring him some relief. And watching Remy is like watching a miracle unfold, I wonder if she is from B. C., and do believe I have seen her. As well my neurosurgeon, Dr. Terry Curran, mentioned her name. I have been getting Botox injections for cervical dystonia for nine years and in two weeks will get my second injection for dysphonic dystonia. My thanks and appreciation to Laurel and all the people involved with Twisted, and of course to the PBS.

2/5/07
Lauren Hall
Philly, PA

WOW! I was fortunate enough to just catch Ms. Chiten's film. I'm Blessed to say I can not relate to anyone in the film physically, and I was Blessed to witness some of the most heroic people I have ever seen. How dare I ever complain? How dare I EVER say I don't feel well because I have a headache? Please know that every single person in this film inspired me to take chances, and to live a more active life just because I can. That's a gift that these awesome people gave out by allowing us in their lives. Thanks you.

2/5/07
Khalapoff

Having Dystonia myself I put out the word about this film through e-mails. I know of one person who watched this and that was my neurologist. He thought it was very well done. I Thought it was to the point of extreme. I became very uncomfortable watching this, my mind went-"this could be my fate." SCARY! You forgot to mention another Dystonia sufferer and a high profile person- Jenny Craig------she wrote about it in her auto-bio- "The Jenny Craig Story". I think people are reluctant to watch anything that is related to sadness, our world is sad as it is. Thank you all for your effort in getting this film out.

2/5/07
Lucy Boling
Boston ,MA

Thank heaven, I had no idea what was wrong with me. I can't thank you enough.

2/5/07
Cathy
Middleburg, PA

Hi Pat,

Your story was my story, except I had no idea what caused my torticollis in 1995. Botox didn't work. Myobloc worked for only 2 weeks at a time. At the time my 3 sons were young. I had to do something because we NEEDED my income. I couldn't even look straight ahead at all. A cervical collar broke the spasm, so I had to wear that to be able to work. After 2 1/2 years of suffering, I had cervical denervation surgery by Dr. Carlos Arce in Florida. DBS wasn't yet approved for torticollis at the time. Before surgery I had joined torticollis & dystonia support groups, and met people who had had the denervation surgery; just as you did your homework before your surgery. My husband and I traveled from Maryland to Florida. Before surgery I was stuck in a posture called retrocollis - I was twisted to the right & sort of up & back, just like you. Dr. Arce told me Retrocollis is the easiest to correct with denervation surgery. He had done hundreds of denervati ons before mine. My head was straight right away. My left trapezius is still in a little spasm - it is a distraction, but not a life alterer like torticollis. The trapezius cannot be denervated or you will have shoulder droop. I do believe DBS is probably the best way to go. My muscles are permanently altered, but your DBS is adjustable, and improvements are possible. To look at me, you would not know anything is wrong, and I had given up hope that was possible, but I was fortunate and had a good outcome.

2/5/07
Violet Klinger
Middleburg, PA

I too have cervical dystonia. I am the Central Pennsylvania Dystonia Support Group leader. We have people in our support group with all the forms of dystonia featured on TWISTED. We usually meet the first Saturday in April, August, and December. Our next meeting is April 14 because of Easter and Passover. Pat Brogan deserves a courage award for not giving up. Pat, since you are from Pennsylvania we invite you to our support group. The film was superior, please show it a few more times.

2/5/07
Laurie Stetzler
Albuquerque, NM

I haven't seen the film yet. I hope to tape it this weekend. I have had focal dystonia for 16 years. Botox worked well for me for about a year and a half. Then I got segmental dystonia and the amount of Botox which can be injected didn't work. I spent 2 1/2 years twisting uncontrollably in severe pain. Dystonia, no matter where it hits a person is devastating. I received peripheral denervation at the University at Jacksonville, FL in 1996. It gave me my life back even tho I had major muscles which had to be "disconnected". I'm frankly amazed that this modality isn't mentioned any more in any of the literature on Dystonia. As in DBS, it doesn't work for everyone. But, as I said, it saved my life. I couldn't have continued to live like that. I still have dystonia is minor muscles which is managed with Botox every three months. It works pretty well. I'll never be 100% again but, I can do the work I love if I take it easy.I think that's the key to this incomprehensible disorder. TAKE IT EASY. And don't drink alcohol, it just irritates a nervous system already under assault. Good luck to us all.

2/5/07
Susan
Marcola, Oregon

I want to express my sincere thanks to Lauren Chiten and to PBS and Independent Lens for sharing "Twisted" with the world. It is an incredibly moving story told with such compassion and the people highlighted are inspirations to us all, whether we have dystonia or have never heard of the condition. I first began having symptoms in late 1988 and wasn't diagnosed until two years later. I had selective denervation surgery with some relief and began botox injections in early 1992. I've had wonderful success with botox all these years, working full time in my own business and enjoying just a terrific, normal life. I have been blessed myself with a loving, caring family (my daughter Jen has already posted on this site) and I thank God every day for them and for my good health.I cried at the pain and frustration of Pat because I've experienced the same exact feelings. Shari and Joe are such beautiful souls and the joy they share truly touches my heart. I wish Remy con tinued success and my thanks go out to all of these great people for sharing their stories and experiences with us.

My prayers will continue to be with all the people of the world who have dystonia, as well as with their families and friends who love and support them. Thank you, again, for "Twisted" and for sharing our stories. Let's continue to get the word out, to pray for those still undiagnosed and to reach out to those who suffer and grieve.

2/5/07
Debbie
Louisville, KY

I was overwhelmed with emotion in seeing this documentary. I too have Dystonia (mine is spasmodic torticollis) and when I saw Pat I saw a reflection of myself. His movements were mine, his feelings were mine. Four years ago I had surgery called selective denervation and it did help somewhat. Maybe Pat could look into this because the pain is much better. My heart goes out to everyone on this planet with this dreaded disease. Thank you so much for airing this piece.

2/5/07
SharonStone Mazurek

I have seen Twisted several times now. I was also on a panel discussion for it. Every time I see the film it offers so much hope for people "living with this disease of distorion." I was diagnosed in 2002 with generalized dystonia. I had deep brain stimulation for my dystonia in 2004. I went from being wheelchair bond and unable to speak to leading a very active life now. Yes, Laurel Chiten is correct when she says "the symptoms of dystonia are" feeling.. like somebody else has control of your body. And too many people are suffering in silence with Dystonia. By viewing this film they will see that they are not alone. Kudos to Laurel for such an extraordinary film.

2/5/07
Donna Binford
Bonham, Texas

I enjoyed the movie so much and feel so for all the people in the movie and their families as I have been thru so much myself with the dystonia. It has been 6 years now since I was diagnosed with cervical dystonia- Medicine given to me January 2, 2001 for arthritis caused mine. I immediately started having flu symptoms, then blood clot symptoms in the arm and then my neck was flopping to the side and back (like a chicken when its head is chopped off). The flopping symptoms along with the pain would not quit. In the first month, I was in the hospital twice and in the emergency room 7 times with no help.(the emergency room doctors actually made fun of me and the family physician told me there was nothing else he could do for me). I actually prayed to die as the pain was so unbearable - to walk across the floor or ride in a car was jarring something in my head and the spasms were so bad- I started having chest pains very bad and told my husband that I was not going to make it as I felt as though I would have a heart attack or my neck was going to break. I was finally able to go to a Dallas doctor and Dallas hospital February 1, 2001 where I finally received help. I ended up in rehab to learn everything over again. I could not write or talk properly. I was able to return home the later part of March 2001 with a wheelchair and walker. (but my neck was frozen where I could not turn my head either direction or look up or down and my head lying on my shoulder). The pain was still unbearable but I was determined to walk, write drive and be human again. I started the botox injections and they have helped me. Things will never be the same as before this happened but are so much better than at first.

2/5/07
Gerri Gapinski
Tallahassee, FL

I thought this film was superlative. I can most identify with Pat since I've had cervical dystonia now for over 30 + years. ( I believe I have secondary dystonia, triggered by a severe case of scarlet fever as a child.) Because people don't understand dystonia, you spend a lifetime trying to hide the symptoms (if you're able) from your loved ones, friends, and the public. I, myself, have been receiving Botox injections for the last 12 years, and I take Klonopin to also relieve the spasms. I used to have a local support group, but had to officially end it during a difficult family time. I still keep in touch via email with one lady I've never personally met, and with a few local people with dystonia.

I applaud Laurel Chitten for capturing the heart and soul of people coping with dystonia. She is to be commended for emphasizing that people with dystonia are not their disease...but rather are "normal," loving, caring, individuals. And, thank you, Ms. Chitten for your extraordinary efforts in educating the general public about such a complex disorder.

2/5/07
Nancy Celia
clifton Heights, PA

I thought the show was good, but couldve shown more people who have it due to hereditary and NOT head trauma. I wished she wouldve shown more kids and teens that had it as well. My 13 yr old watched it with me , he has dystonia, came on at 10 yrs old, in his foot and ankle and spread to his torso and his neck. We were fortunate to have Drs that knew what it was and it was a slow long process, but he gets botox and has had ITB pump implanted. Its hard for him, because he never sees teens or kids with it, only adults, so he cant relate per say.. He is DYT1 NEGATIVE, and no head traumas, so its a mystery as to how he got this. His dad showed small signs of it , but never knew what it was, so if my son got it from genes, the test showed it was negative for that. All in all it was a good show, too bad it wasnt longer and portrayed more kids that had it.

2/5/07
Geoff
Nashville,TN Vanderbilt

I had dbs surgery in 2002 and it didn't work... But, I just had my leads revised 1\2007 and my simulators will be turned back on in 3wks and programing will begin agian...

2/5/07
Colorado Springs

This is a terrific film. I never heard of this ailment. It opened my eyes to something new. Shari and Ira you give a lot of hope, not only for people with dystonia, but inspiration and happiness to living life to the fullest. This is a wonderful film.

2/5/07
Oweta Troncale
Temple City, Ca.

I enjoyed the movie "TWISTED" very much. It was more informative than any I have seen on Dystonia. My daughter has been suffering with it since her teens and is now 52. She, too, was improperly diagnosed for about 20 years. She is now training a puppy to be a service dog to be there t help her when she falls. I am very proud of her to have the for sight and ability to train this Border Collie to be a help to her. He is still a puppy, but seems to know he is there to help her and is training well..also chewing up socks, etc, like all puppies do. I thought the reference to DBS was good as it did not "push" it. It told of the availability of it and the pros and cons that may occur. Thank you or the movie. How about one on Fibromyalgia? That is my problem. No cure for it either.

2/5/07
Joel Dorsey
Grand Canyon, AZ

I just wanted to thank Laurel Chiten and Independent Lens for getting this film on TV. I developed Cervical Dystonia about 6 years ago and it took me a few months to figure out what was happening to me. I went to 3 doctors and one chiropractor before I was finally diagnosed. It is scary not to know what is happening to you for that long. I cant imagine what it must have been like for people in the '60s and '70s when Dystonia was virtually unheard of. I have read a lot about Dystonia on the internet and talked to doctors about it, but this was the first time I could ever listen to stories of people who had similar symptoms to mine. Anyway, I wish all the characters in the documentary good luck in the future and hope "Twisted" can help bring more light to the subject. Thanks again.

2/5/07
Yvonne McCallister
Corvallis, Oregon

I was diagnosed with dystonia about 3 yrs ago (I am 59). My head lists to the right and I have had extreme pain in the neck and shoulder and generalized pain, etc. for over 15 years. I have been through all types Doctors, drugs, procedures, etc. I cried throughout the film, especially about Pat's story. I would really like to know how he is doing. It would mean so much to me to know that the surgery was successful for him and he now has his life back. Is there anyway to keep up with his progress?

2/5/07
Dan Kilstrom
Phoenix, Arizona

I thought the film was very informative and gave viewers in depth look at a disease that takes away your life peace by peace and destroys all hopes and dreams. I have had Generalized Dystonia all my life,I have no clue of what it's like to be "normal".Now in my 50ties,I can strongly relate to the people in this film. I applaud PBS and Laurel for the airing and making of this film.Job well done. Television today, can be and should be used as a tool for helping and educating people.Instead we are faced with the killings, rap,negativity on almost every level of our society,including the news and let us not forget the tons of ridiculous, mind bending, over and over commericals. We who have Dystonia are a small majority, but we need to be heard.Thank you PBS for your support.

2/5/07
Pat Brogan
Hazleton, PA

Thanks to all the people who have written such kind and encouraging emails. This documentary changed my life and humbled my perspective on so many things (it would take to long to post). Thanks to Laurel, Sabrina, Sherry, Andy and all the people who put together an amazing production. If anyone wants to contact me you can email me at patbrogan13@yahoo.com. Love to hear, listen, and help anyone just like Peter Cohen, who was and is my savior.

2/5/07
Dystonia Medical Research Foundation
Chicago, IL

The Dystonia Medical Research Foundation (DMRF) is proud to help promote Twisted and is profoundly grateful to Laurel, Pat, Shari, Remy, and Peter for sharing their lives so candidly. This film is truly a triumph for the dystonia community.

Dystonia can be a confusing disorder there are many different forms and several causes. Treatments must be highly customized to each person. Please know that the DMRF is available as a resource for information, contact info for movement disorder specialists, support group referrals, and opportunities to get involved in the dystonia community. Our ultimate goal is a cure. We welcome each of you to visit our website at www.dystonia-foundation.org or call us at 800-377-DYST (3978). Thanks to each of you for taking the time to share your reactions and stories.

2/5/07
Glenview, Illinois

Your film touched my heart and opened my eyes. My 16 year old daughter has dystonia, it helped me to hear from adults with varied degrees to understand her better. Also, we need a support group and more information. Can someone help us with finding a web site where she can talk with others with dystonia. I loved the film, thank you.

2/5/07
Heather MacLellan
Calgary Alberta

THANK YOU so much for showing Twisted on your Independent Lens series on Jan 30th. I am a long time supporter of KSPS Spokane and I have had dystonia for twelve years. The movie Twisted will, I think, help people who dont have dystonia to understand what it is like to live with this distressing condition, and to spread the word about dystonia. Thanks to all who were involved in making Twisted. You did a great job!

2/5/07
Sana Gebarin
Tulsa, OK

I found this story moving beyond any words I have the capacity to express. I have been inspired to learn more about this disorder so that I may relay that knowledge to those around me in a positive and informative manner. The people who were documented in this episode are some of the most heroic I have ever seen, and I wish for them a happy and healthy life. Thank you for this strong and important documentary.

2/5/07

I am a 10 yr survivor of a totally different condition, a fatal lung defect called Primary Pulmonary Hypertension. I deeply appreciate and thank Laurel Chiten and the others in the film for telling their stories. I was awestruck by the capacity for life and heroic capacity to endure pain that these people go through, While my condition is of a totally different type, I was able to relate, especially to Pat Brogan, who has had a 'hard row to hoe' in his battle with dystonia. He so eloquently described the frustration and pain that isolates people with serious conditions such as dystonia. I am literally awestruck by Remy Campbell and the Tritts and Shari's ability to overcome her condition and feel privileged and truly happy to see that she is thriving.

I am also grateful to Independent Lens for showing this type of programming that reaches people who, like me, are living in the isolation of a unique bodily condition. I am so thankful to the participants for letting us into there worlds and for letting us share their pain in the smallest, but nonetheless vital, way.

2/5/07
Thank You for making the film, "Twisted". My wife Susan has been living with dystonia for about two years. For the first six months they werent sire what was wrong. After she was diagnosed, it was about another six months till we found a treatment that helps her neck movements. She has been on Botox for about a year now.She still has to rest when the pain in her neck and shoulder increases, but the spasms are controlled with the Botox .We watched your film together and it helped me understand better what she is going through and she could identified with people in the film. Many Thanks! Bill

2/5/07
MIRIAM KIMMELMAN
New York, NY 10280

Yesterday I viewed "Twisted", a well done documentary about Dystonia. This is my story as well, since I have primary dystonia, with symptoms since I was 9 or 10. I saw 100 doctors, had surgery 3 times by Dr. Cooper, with some success, and have seen symptoms come and go. This was well portrayed in the film, without sentimental treacle. Thank you for airing this film. Lauren Chiten deserves an Oscar.

2/5/07
Rosy Mickelson
Boise, ID

I'm grateful to Laurel for making this great informative and inspiring documentary. Many thanks to PBS for airing "Twisted" so more people can become aware of Dystonia and its impact on people who are affected by it. I'm amazed by the strength and perseverance of the characters in this film. You are all so courageous and wonderful examples to me. I'm 36 and I've lived with oromandibular dystonia since I was 2 years old. I was diagnosed only two years ago. I identify best with Shari and her experiences and feelings because I, too, have difficulty speaking and communicating. It's very frustrating. I am not able to open my mouth at all so eating and drinking are very difficult also. I push pieces of food into the side of my mouth and hopefully don't choke on them. My whole face, including my tongue and eyes, go into abnormal postures and spasms. People come up to me and say "Are you okay?" or think I am deaf because I use sign language. Botox injections help with my drooling, grinding teeth, and spasms, but very little improvement with opening my mouth. My hands, especially my right one, are affected also. Shari, you have the best attitude...you accept what you have and LIVE! We are all so much more than Dystonia. Thanks Shari, Pat, and Remy for sharing your remarkable stories of hope with us. I wish you all continued success!

2/5/07
Geoff Miles
Nashville, TN

I had dbs surgery in 2002 and it didn't work... But, I just had my leads revised 1\2007 and my stmulators will be turned back on in 3wks and programing will begin agian...

2/5/07
CHERYL BRANGWYNNE
BELMONT MA.

THIS WAS A VERY ENLIGHTENING PROGRAM.WHAT THE BRAIN STIMULATORS REMIND ME OF IS SOMETHING MY MOTHER HAD INSTALLED IN HE BACK FOR CHRONIC BACK PAIN. SHE HAS BEEN DEAD SINCE 1980. SHE HAD A SIMILAR RESPONSE AS THE GENTLEMAN THAT HAD THE STIMULATOR IMPLANTED IN HIS BRAIN. IT WORKED FOR AWHILE THEN STOPPED. IT JUST SHOWS YOU HOW COMPLEX OUR BRAINS REALY ARE.

2/5/07
Martha Murph
y San Diego, CA

TWISTED is a very important film that so humanly & intimately chronicles the lives of several individuals affected by dystonia. We were fortunate enough, here in San Diego, to have a special advance screening with filmmaker Laurel Chiten joining us for the evening.

TWISTED is a very touching and moving film, yet also very empowering and inspiring as we witness how these individuals each figure out ways to live with this complex and, sometimes, life-altering disorder. As someone who has had Cervical Dystonia for 31 years and who went undiagnosed for 12 years, we definitely need to bring more attention to this condition and the symptoms related to it so that a diagnosis comes more quickly. We also need to make the general public as well as all healthcare professionals aware of it, so that it becomes a recognizable word just like other disorders, such as Parkinson's and Tremor.

TWISTED is going to be a very effective tool in getting our message out there. A huge thank-you should go to Laurel and to all those involved in creating this wonderful documentary, particularly the dystonia-affected persons who so selflessly allowed us a glimpse into their lives. Thank you so very much!

2/5/07
Daniael Monzi
Orlando, FL

I am so inspired. Thank you for making this film. To Pat, Shari, and Remy thank you for sharing your stories. Lastly, thank you to PBS for bringing informative films like this to us all.

2/5/07
Boise, ID.

I really am glad that this documentary came out. It was done in good taste and showed both sides of DBS surgery, which I am considering. I could relate more to Pat. He & I shared the same type of feelings. Becoming a prisoner in your own home because of the stares and embarrassment of the tremors and twisted look. There are so many doctors even that don't know what dystonia is, how can you expect a lay-person to understand. I know from the dystonia bulletin boards that many people watched this and hope it airs again.

2/5/07
Susan McMillan

Hi, I'm 54 years old and 5 years ago I was diagnosed with Tardive Dystonia, Tortocolis and generalized Dystonia, including blasphaspasms. I developed Dystonia after taking a neuroleptic medication for depression. In the first year I could not get out of bed, tolerate any sounds, smells or tastes. I lost 30 pounds in 2-3 months. My head would twist to the left and back and the right side of my face, mouth, tongue, eyes had rapid spasms. My speech was very slur-red and in public people often thought I was drunk. When the spasms stopped I had confusion and I was disoriented.

In five years, I have been to 10 doctors and treated with over 35 different medications. Including: muscle relaxers, Requip and Mirapex used for Parkinson's, antidepres-sants, neuroleptics, even medication for arthritis. Nothing worked and the spasms and pain were bad. The worst part of developing Tardive Dystonia is the misconceptions by doctors, medical professionals and other Dystonia patients is that Tardive Dystonia is not a dystonic reaction (i.e. a drug overdose), that we don't cause this, that not all of us are mentally ill, or any of the other myths. Medications for Parkinson's and 40 can cause this form of dystonia. The Twisted movie opened the doors for all of us with Dystonia to get respect and support from family and community. I have now feel empowered to leave my isolation and go out and help others. Truly a great work of art.

2/5/07
Susi Pensel

Laurel Chiten has created a poignant, compelling, deeply moving and educational film about the devastating realities of Dystonia. She does so with such great compassion and sensitivity it demands that you watch it and not turn away. My husband, who falls asleep during many a program, was riveted by TWISTED! Quite the barometer!! I am so grateful to the patients who allowed filmmaker Chiten to tell their stories. What a battle they have fought. They helped make this film superb. I have a focal dystonia of the vocal chords and hope Laurel Chiten will tell "our" Spasmodic Dysphonia story with the same skill exhibited in this brilliant documentary.

2/5/07
HARRIETT FARBER
SKOKIE, IL

I AM THE MOTHER OF SHARI TRITT WHO IS IN THE MOVIE TWISTED. MY HUSBAND AND MYSELF WERE ONE OF THE FOUNDERS OF THE DYSTONIA MEDICAL RESEARCH FOUNDTAION AND HAVE WORKED VERY HARD TO EDUCATE THE PUBLIC AND THE MEDICAL COMMUNITY ABOUT DYSTONIA. A SPECIAL THANKS TO LAUREL AND THE PEOPLE IN THE FILM FOR TELLING THEIR CAPTIVATING STORIES FOR THE WORLD TO KNOW AND UNDERSTAND, TO PBS FOR PUTTING DYSTONIA IN FRONT OF THE PUBLIC, AND TO THE DYSTONIA MEDICAL RESEARCH FOUNDATION FOR ALL THEIR HARD WORK AND DEVOTION TO DYSTONIA.

WE ALWAYS SAID IF WE CAN HELP ONE PERSON AND THEN ANOTHER WE HAVE REACHED SUCCESS. EVERYDAY WE ARE GETTING CLOSER TO FINDING A CURE, WE STILL HAVE A LONG WAY BUT THERE IS HOPE. THANK YOU TO ALL THAT HAVE EXPRESSED YOUR FEELINGS ON THE FILM AND THE BEST OF EVERYTHING TO EVERYONE WE HAVE TOUCHED.

2/5/07
Chelsee Damen
Nanaimo, BC

I've been living with Dystonia for about 13 years now (just over half my life) and have only begun in the past four years to understand what it is and how to cope with it. Living without a diagnosis was a nightmare. I want people to know about Dystonia so that nobody will have to go through that in the future. Thank you for the film.

1/31/07
Sebern Fisher
Northampton, MA

I urge you to look into a non-invasive approach to the electrical domain of the brain called EEG biofeedback or neurofeedback. Colleagues of mine have had success with dystonia using neurofeedback. You can contact me, Sebern Fisher at sebern.fisher@verizon.net or go to www.isnr.org or to www.eegspectrum.com for more information. There are no promises here, but definitely a path to be investigated and considered. Very sincerely, Sebern Fisher

1/31/07
Bob
Battle Ground, Wa.

The film was exceptional. I was diagnosed approx.6years ago-my head lists to the left, myobloc injections work for me. I receive 9 injections every 3 months. I cried throughout the entire film, as it brought back painful memories of my onset. Regards, Bob

1/31/07
JuliaNancy Isaacson
Ishpeming, MI

Thank you. My 13 year old son has been diagnosed with early onset generalized dystonia. It is hard to imagine what is going on in his mind. He has tried many doctors, and it is difficult to express to other family members what he is experiencing since he looks pretty normal until you watch him master certain everyday tasks. I hope dystonia won't always be such a foreign word and he won't feel so alone. Thank you for the variety of active people in the film. He will relate to Pat when he sees the basketball. Thank you all for this wonderful film! It breaks my heart yet gives me hope.

1/31/07

I really related to this film-I am 27 and was diagnosed with Dystonia eleven years ago. I started having symptoms the day after my 16Th birthday, my right foot started to have an extremely fast tremor. It went on all day, day after day. The doctors didn't know what it was. I was given Valium and told hopefully it would pass. They also tried Botox, after ten shots, that worked, but only for three weeks. Symptoms returned the night before Thanksgiving. So they increased the Valium so much so I was too weak to even get up to shower, but my legs were still going. After that I was hospitalized for three weeks. They did a bunch of tests, tried bunch of meds. The test found nothing. So they concluded it was all in my head. I was sent home on Clonopen and an anti-anxiety med.

The clonapin was purely nasty-I could hardly talk. I was born with Cerebral Palsy which effects my speech and when you added the drug, it was horrible. I stayed on that for four months. I would get thru my school day, most of the time in pain, and then I would come home pop more meds and go to sleep. The Symptoms persisted-finally they gave me a referral to Columbian Pres. movement disorders clinic where I got diagnosed with Dystonia on top of my CP-lucky me. They wrote me a script for Senament. Worked like a Charm for almost two years-no side effects, I could even drink, what a dream!!

Second semester of college I relapsed, I had developed a tolerance and when I increased my dosage my foot became locked in a painful position. I then tried Artain, those eight wks are a blur of depression and fatigue and guilt my mom was paying my tuition and I can't even get it together to do my work! Not to mention anger, my roommates, who were less then supportive, where all partying and having a great time and I had to deal with this. I stopped taking the stuff when I was reading and the page became blurry. Today I am OK-not great, but I can live like this. I still have tremors in my foot but it's not constant. When it goeson for more then a couple days I go back on my Sinament.

I am encouraged I've made it 11 years-the surgical options are lots better then when I first got diagnosed. So if it ever becomes to horrible-I have options. Right now, I wouldn't operate to relieve the tremor. But I always wonder-what if some of my symptoms that I consider CP, what if they are really Dystonia? I cannot drive or feed myself hardly. If DBS could change that-I would want to go for it. Thank you so much for making this film. Remi I am "bent" some days. Shari, you and Ira are truly beautiful together, I hope one day I find my Ira. Pat, I related so much to everything you said about this battle. Thank you for giving my feelings a voice!! Best of Luck, Julia jnelson133@yahoo.com

1/31/07

This program was so moving and informative. I felt the impact both with my mind and my heart. Why so little is know about dystonia is a mystery. All of the people in the film were amazing to me. It was Pat Brogan who pulled most at my heartstrings as he dealt with the ups and downs of the implant settings. The post-op treatment was a stark contrast to the success experienced by Remy. Shari was a wonderful example of triumph and courage. Each individual contributed so much to the beauty and the pain. Pat, my prayers are with you man. I am a road cyclist and your story helps me realize what a delicate balance life is. Thank you for this journey into the "Twisted" program. My world is a bit broader and I am more aware.

1/31/07

Is it possible that Dystonia is genetic and is presented with symptoms in some but not all people? In addition, is it possible that of the people that have genetic Dystonia but present no symptoms, that a trauma or other health related issue can cause the Dystonia to present itself?

1/31/07
Joan

I am glad to know that all are doing so well. I was especially worried about Pat, because at the end of film it seemed he wasn't quite having the success that was expected. I felt empathy for all the people in the film, however moreover I admired their courage and strength and the family support they had.

1/31/07
Charlotte

Since spring break of 1988, when I contracted strep throat while on vacation, I have been plagued with a condition diagnosed as Fibromyalgia. I have experienced many of the same symptoms of pain, muscle fatigue, depression and anxiety as I watched this mysterious ailment take over my life and career. I am very much interested in the lives of the people portrayed as well as the spouses and families involved. Please keep letting viewers know that some medical conditions are difficult to cure. People deserve respect and a medical community sensitive to 'ailments' that they cannot always prove with tests or cure with known medications. Please do a similar show on people with Fibromyalgia. I had never heard about it before I came down with it; now I know at least ten people in my small town who have it. For Pete's sake, help us find a cure!

1/31/07
Melody
Springfield, TN

I am so glad there is an informative video for people concerning dystonia to the general public. I have a form of dystonia called Spasmodic Torticollis that came about four years ago. I saw several doctors for it and no one knew what I had. My husband asked the doctor to send us to a neurologist. Within ten minutes the neurologist diagnosed me. I received Botox injections in my neck for the next couple of years, every three to four months apart. They gave much relief with the pain and pulling. Everyone that asked me what I had, had never heard of spasmodic Torticollis, much less the word "dystonia." People would tell me to "just hold your head up straight." Even though my dystonia was not as severe as the people featured, I understood many of the feelings they were expressing. I hope PBS shows the video again in the near future and also attempts to get it on other networks like CBS, ABC, or NBC. There are many people out there that have a dystonia, but have not been properly diagnosed.

1/31/07
Robert Lee
San Antonio, Texas

What a wonderful program! I had no idea about Dystonia. I can only imagine that the world's lack of knowledge about this condition only compounds the issues of those affected by it. This program has expanded my perspective of the world, the people in it and in turn has expanded my perspective of my own self. Thank you so much to those who shared their story and to those who put this powerful program together!

1/31/07

I admired all the people in the film. Each was so unique, brave, humble beautiful. Twisted is an amazing film. I'll be recommending it. Thanks.

1/31/07
Ross G Hoffman, M.D.

Thank you for airing this important film. Below you will learn about my efforts to help with dystonia and movement disorders. The local newspaper here in Colorado tells part of my story. This is a personal mission. Pls tell Pat Brogan that he has a hoops fanatic friend in Colorado who shares his competitive spirit. I will not quit until we create new solutions for Pat, for my family, and for the many thousands to millions who continue to suffer.

1/31/07
Elizabeth Hightower

This touching film made me feel a real connection to people suffering from a condition I had never even heard of before. What strength and character these amazing men and women show. Thank you for opening my eyes and my heart to their stories.

1/31/07
Janis Lord
Colorado Springs

I only caught the last half of your program "Twisted." I was glued to it! I will try and get the DVD. I was introduced to Dystonia through my dearest friend who now lives in Tempe, Arizona. If you ever wanted to do more research and another story...please consider her. Lois Filipski has lived with Dystonia since she was in her teens. Lois has an amazing story! People back then in the fifties thought that she was faking it all the time. In college she met Alan who was confined to a wheel chair from rheumatoid arthritis. They married and they had two beautiful children naturally. They are now proud grandparents. Alan is a professor at Arizona State University. What a story! I felt extremely privileged to be the person to accompany Lois to the Bronx where a Dr. Erving S. Cooper was doing cryosurgery on dystonia victims. I am a writer and wrote the story up. Perhaps someday I shall get a chance to share it with the world. Like your documentary...IT NEEDS TO BE TOLD!!! Thank you so much for airing your program!

1/31/07
Michael
Los Angeles, California

What a great film. Filmmaker Laurel Chiten definitely achieved her goals when she made this film. It was entertaining but very heart wrenching to watch as people struggle with a debilitating illness. It was entertaining... because it was made in a tasteful, interesting way and it told a story about real people. Of course, it was also heart wrenching because a viewer is watching the struggles of real human beings and their dealings with something that is beyond their control. As such, the viewer hopes and prays that each will find the answer or a cure while watching the struggles of each person stricken with the condition. Excellent! I really enjoyed it.

1/31/07
Anita Thorne
Anchorage, Alaska

My brother Alan was born in 1949 with dystonia. If you thought no one knew anything about dystonia in 1972, doctors then were in the dark ages. Cerebral palsy was the diagnosis for a long time but dystonia was finally determined. His right foot started turning in when he was 2 and it progressed from there. Several brain operations were attempted, including the freezing method, but nothing worked. He was far more severe than anyone you featured, perhaps because he was so young when it started.

Alan had the same spirit as Remmy's(sp). Not once in my childhood do I ever remember him complaining about his condition. He was always making plans, building houses in the back yard, working with Dad fixing things. He swam, fished, did everything we did. His mode of transportation until we found an electric car was a wagon. He sat in the wagon and pushed himself with his right foot. His right side functioned better then the left.

My family had extensive neurological al testing done at the U of W. I didn't want children because I was afraid of them being born with dystonia. It was determined that my brother's condition was not genetic, that is was just a lack of oxygen during birth. I still have their letters. I believed that for many years. It wasn't until after second child was born that I found out on the internet dystonia was genetic. Had I known that I probably would not have had children.

1/31/07

My aunt has had spasmodic Dysphonia for about 25 years. She is so self conscious about her voice and is always apologizing for the way she sounds. Botox treatments have been very successful for her. I had no idea until I viewed this film, how rare or how severe this condition could be. I printed out the article on this website about Diane Rehm and will be sending it to my aunt, who resides in Florida and does not have a computer. I hope that knowing she is not alone will help her a bit with her self-confidence. She is a sweet, loving, giving, gifted person, with so much to give to others (even at her tender age of 84)I hope that it will help give her the inner strength to go back out there and bloom again.

1/31/07
Adam Gilles

I cant even begin to express how deeply alive this film made me feel. I felt so conflicted which is probably why I felt so alive. I felt so happy and at the same time so pained and the outcome was that I felt alive. I truly wanted to hug pat and tell him that I loved him. I felt like I was a part of a Robert frost poem.

"I'd like to get away from earth awhile
And then come back to it and begin over.
May no fate wilfully misunderstand me
And half grant what I wish and snatch me away
Not to return. Earth's the right place for love:
I don't know where it's likely to go better.
I'd like to go by climbing a birch tree,
And climb black branches up a snow-white trunk
Toward heaven, till the tree could bear no more,
But dipped its top and set me down again.
That would be good both going and coming back.
One could do worse than be a swinger of birches."

I would like to go by climbing a birch tree with Shari and pat all the while remembering that "earth is the right place for love." "I dont know where its likely to go better thank you Adam Gilles

1/31/07
Craig Colclough

Firstly I would like to thank Laurel Chiten for creating this film. To say the least- I was deeply moved. I cherish films, such as twisted, that have the ability to change my understanding of the world. Throughout my life I have had a complex emotional fear of disabilities. I know that I am not afraid of individual people who are disabled but rather that I have difficulty facing the realities of their hardship.

Consequently I have avoided people with disabilities. This film opened a door for me to see the real people behind disabilities. In my heart of hearts I have always known that behind the distraction of peoples physical differences they were just like myself, but not being able to overcome my pain and discomfort I have previously been unable to authenticate this belief this film provided me with that proof. Before seeing this film I was very angry with God for letting people live with such difficulties but after seeing the joy, creativity, pain and courage of the individuals in this documentary, my anger at God has been replaced with pride in the human spirit. The beauty of the married couple as they talked about one another was so powerful. I was instantly reminded of my wife and I. The footage from their para sailing was especially touching for me as my wife and I went para sailing on our honeymoon. They were just totally normal and totally in love. As the video progressed the wifes physical differences melted away and by the last few scenes I could understand her as well as anyone else. She has such a powerful spirit you just couldnt miss what a wonderful woman she is!


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