Dystonia is a chronic illness for life. The people who have dystonia experience painful contractions on their bodies, ranging from their limbs, face, torso and even vocal cords. Dystonia can also cause people to perform involuntary movements, sometimes resulting in painful twisting and bending. Almost one out of five people in America have dystonia and it is ranked as the third most common movement disorder.
And yet, despite how common dystonia can be, not many people actually know its existence. This lack of awareness often leads to people looking down at those who have dystonia, often mistaking them for people who have mental disorders.
Renee Proctor, the presenter for today’s MEGA Monday, was a victim of dystonia, and she had personally suffered many hardships throughout her life, involving domestic abuse, low self-esteem and ridicule from people around her.
“I originally dropped out of college because I thought I was lazy and stupid.” Said Renee Proctor, as she was referring to her abusive husband, “I was a battered wife…and was belittled for years…I didn’t realize that was the cause of my low esteem.”
It was not until she met with Madelyn Ballard, that she overcame her troubles to become the person she is today—a strong and compassionate woman who stands for those who struggle all diseases. Although she was initially opposed to attending, it took about three weeks until she eventually joined and grew to love in with the P.R.E.P (The Psychological Rehabilitation Education Program) club, so much that she became the president herself.
“I was surprised…” Said Renee Proctor. “I loved it, they were really caring. You really feel like you got a family with P.RE.P…P.R.E.P has been with me all the way.”
About 27 people attended the presentation. In one of her slides, Renee showed a video that had a person struggling through a dystonia storm, she had trouble breathing and had muscle movements involuntarily. It was almost hard to see the video, which lasted five to ten minutes long. One of the attendees had left the presentation temporarily due to how uncomfortable the scene could get.
And despite her dystonia, Renee always came up interesting ways to lighten up the presentation. When providing snacks, she used pretzels to describe her dystonia as “twisted”, though not as a negative connotation, but rather as a positive one. And near the end of presentation, participants got to play a game of jeopardy. Many participants were competitive but friendly enough to appreciate the game in good spirits, and learn at the same time.
“I do not like to be a martyr…” Said Renee Proctor, “But here’s what I look at; if I can encourage somebody else to do something, than I made a mark on their life.”
Unfortunately as the presentation concluded, we learned there is no cure for Dystonia, but the best we could do is to raise awareness for those who are victims of it. Many who have dystonia have been misdiagnosed with mental illness, when it has been researched that it does not affect the person’s intellect. Sometimes, they are looked down upon by other people—simply because very few actually knows what dystonia actually is. You can petition to raise the awareness of dystonia by entering this link:
As of right now, approximately 16,000 petitioner have signed as of today. The petition would need 100,000 signatures online by Oct. 1 2014.
Karla Wilson, who is a very intelligent psychology professor at CF, did not know much about dystonia. It was not until she attended the presentation, that she started learning more about the disease.
When asked if he enjoyed the presentation, Roberto Lasaga responded positively, “I did and I am positive everyone else did as well. I think it was able to raise awareness with the campus which is a good start, maybe dystonia will have a month with the new few years, that’s what praying for at least.”
By: Leslie Lo