Sunday, February 11, 2007

Twisted. Living with cervical dystonia and spasmodic dysphonia.

Have you seen this film?

Twisted is a film by Laurel Chiten, produced by Blind Dog Films . This story is about people living with the neurological disorder, dystonia. The experience of being trapped inside your body and thinking about what will set you free is told in the words of people living with cervical dystonia (CD) and one woman, a radio presenter, living and working with spasmodic dysphonia (SD), a form of dystonia affecting vocal cords. Laurel Chiten, the filmmaker also tells a little about her own experiences of living with CD.

A film review by
The Santa Fe New Mexican on the back of the DVD cover says, “… Twisted is a success. Not only because of the filmmakers personal connection to the topic but because of the film’s fascinating and complex cast of characters. Its funky enough to be an art-house flick and brimming with larger themes about how people set themselves free. Part joy, part despair, TWISTED also explores the wonders and limitations of medical breakthroughs.”

If you would like to read a little about the lives of the people featuring in star roles of Twisted, this link will take you to them.

This film reveals inspiring stories of courage, determination and willpower. There is something for everybody. It is suitable for personal collection, continuing professional education, and support group meetings. You can order the film on-line, wherever you live. Just follow the above link to Blind Dog Films.

Sue Bayliss. Cairns, Australia.


Yvonne said...

Hi Sue
Today my small group of friends who meet every Monday to share craft and companionship watched twisted with me.
This was an informative experience for them and I feel they had their eyes opened as to the diversity and severity of dystonia and gave them some insight into my world.
Although my Dystonia -(cervical combination laterocollis and torticollis) is mild compared to those in the movie I could relate to so much of what was discussed especially in terms of frustration around diagnosis and the relentless fatigue and pain.
Heres hoping the recent screening in America will help raise awareness of this curious and isolating condition.

I look forward to feedback about your support group and I wish you the best of luck with it.

Sue Bayliss said...

Thank you Yvonne,
You certainly hit the old nail on the head. Frustration around diagnosis coupled with the relentless fatigue and pain is such a huge issue for people with dystonia. It is like, GET ME OUT OF THIS BODY - SOMEONE, ANYONE, PLEASE!

It is great to hear your craft companionship group watched Twisted. Some of my family watched it yesterday. Although they are familiar with my history and the difficulties I face in daily life, watching the DVD made it all so much easier to understand the severity of it all.

I am hoping our Cairns Support Group, when we have got it underway, will be able to have some poster displays and information tables at shopping centres and have the DVD running so we can get some community awareness about dystonia.

Once again, thank you for your supportive thoughts and comments.


Megan Bayliss said...

I watched the movie and thought it was an excellent training and consciouness raising video.

I would like to know more of the featured people's outcomes. I did follow the links but it was insufficent info to satisfy my curiosity - particularly in relation to Pat.

I would have to give the video 10 out of 10... and congratulations belong to the young woman who made the film.

Sue Bayliss said...

Thank you for your comment, Megan. Twisted is the kind of film that makes for good subject material for
both consciousness raising and inservice training for professional work groups. I think it just about covers all areas of suitability for screening.

I am interested to see you rate this film as 10 on a scale of 10. The Santa Fe New Mexican rated the film as 4 and a half stars out of 5. I rate the film highly too.

Perhaps over time we may hear more about how Pat is managing. The frustration levels of daily living with dystonia must just go through the roof for people like Pat. He has so much to offer through his skills but remains trapped in a dystonic body that just wants to twist into it's own form.

I know from experience that elevated levels of frustration and stress seems to increase physical pain.

I hope Laurel Chiten receives an award for this film.