Remy Campbell has a generalized form of dystonia which, untreated, causes her to walk bent over, in great pain, at a 45-degree angle. Several years before filming TWISTED she underwent deep brain stimulation (DBS) surgery. Since then she has regained control over her body and walks upright, pain-free.
Remy is currently living and working in Victoria, British Columbia in Canada. She walks her dog everyday, takes belly dancing and has a physically demanding job. She is continuing to express herself through art and film.
Tell us how you are doing—have there been any changes in your life or health since the filming?
Since filming I've been working at a dog groomer’s and am now the proud owner of my own dog, Ruutu.
What was it like to be a subject of this film?
I was honored to be able to share my story. I feel that there are many people out there in similar situations as I was. I hope my contribution to the film will inspire others not to give up.
What do you think of the present and future of dystonia treatment and research?
I'm extremely excited and optimistic. Each year it seems like people living with dystonia are having more choices in treatment and are able to determine which treatment suits their needs best.
On the other hand, I do believe that we need even more awareness and education available aimed towards all branches of the medical field. The general public also needs to be as familiar with dystonia as they are with, say, Parkinson’s disease or Multiple Sclerosis.
What are your plans for the future?
My plan for the future is to continue living the best life I can, and let the wind guide my sails. I still continue to shoot film footage and eventually I would like to put together my own documentary.
What impact would you like this film to have?
I hope many people have a chance to see TWISTED, and hopefully a few viewers will say, "Hey that looks like what I have.” I hope people living with undiagnosed dystonia can finally have an explanation as to why their body does not listen to them. I think once what’s wrong has been established, treatment is not far to follow. Awareness is the key.
Read updates and Q&A from others featured in TWISTED >>
Learn more about dystonia >>