Living life with dystonia, raising awareness

As many as 250,000 people in the United States suffer from dystonia. It is the third-most common movement disorder behind essential tremor and Parkinson’s disease. With September being Dystonia Awareness Month, KIFI/KIDK sat down with one Idaho Falls woman who is battling this disorder.

“My biggest fear is when my grandbabies were born, I was so afraid to hold my grandbabies because the last thing I wanted to do was to have a tremor and drop one of them,” Whitmore said.

Whitmore was diagnosed with secondary dystonia tardive dyskinesia seven years ago. But for two years prior to the diagnosis, she struggled with the symptoms not knowing what was happening to her. It turned out the dyskinesia was brought on by depression and anxiety medication she was taking due to a family tragedy.

“As time when on, I was in liver failure and kidney failure from the medication they had me on,” Whitmore said.

So she resorted to natural supplements and a positive attitude, which she says was the most important mindshift she and her family could have made.

Having never heard of dystonia before her diagnosis, Whitmore credits much of her success with coping to doctors at Upper Valley Family Medicine in Rigby and through her own research.

“The doctors did everything they can because there are so few doctors that understand dystonia. It’s not really researched. They did the best they could is what I can say,” Whitmore said.

Whitmore started finding support groups, nationally and locally, to help others who were struggling with her. She also posting her own YouTube videos.

“I couldn’t believe how many people in southeast Idaho and in this area that have dystonia. There’s a dear friend of mine who lives in Salmon. There’s a lady that lives in Rexburg, another one that lives in Rigby, and another one that lives in Rexburg — that saw my video and said, ‘You’re living my life, but no doctors can help me.’ So we’ve just kind of reached out to each other and supported each other,” Whitmore said.

Dystonia is a condition that can appear at any age. It can affect young children to older adults of all backgrounds. It can be hereditary and medication can cause it.

“I appreciate life or every second of every day. I went for two months not leaving me house because I didn’t want to have tremors in front of somebody. It’s a mind game, especially when you take somebody that is healthy and they go to bed and then wake up the next day and they cant move or they can’t speak,” Whitmore said.

For more information on the disorder, click here.