Shundra Wooten - Ask me about Ataxia

Author: Shundra WootenPatient or Advocate: Shundra WootenDisease Affiliation: SCA3,Spinocerebellar Ataxia (SCA3)

 

I’ve lost three family members due to this genetic (hereditary) disease. There is no cure and I have another sister that is currently affected. I started showing symptoms at age 43 and was diagnosed at 46. I noticed I was walking like my sister who died in 2004 from complications of a form of ataxia. I didn’t know what was wrong with her, because my family never discussed anything.

I grew up in a small, rural town in Arkansas that had one grocery store. The nearest hospital was more than 30 minutes away in Jonesboro. I wanted to find out because I have a daughter who is a nurse that could be affected. I saw a neurologist in Jonesboro and went over the symptoms and family history. He ordered a genetic blood test and my results came back in February 2016 positive for SCA3. I praise God that the genetic test was done and I didn’t have to pay anything because of my income. I’m not sure if other family members have gotten tested, because it is so expensive and the neurologists aren’t knowledgeable and wouldn’t know what to do. I was told by my neurologist in Jonesboro, Arkansas that there was nothing else they could do for me.

Since I was diagnosed, I lost a sister and nephew to complications from ataxia. Currently, I am in a clinical trial at Emory to see if a study drug will slow the progression of SCA. I decided to retire from teaching in May 2016 for my safety as well as the kids whom I miss dearly. I ambulate with a walker now. The walker is my best friend.

Health insurance has been the toughest. I didn’t have insurance so it was difficult for me to see the neurologist and get physical therapy. When I retired, I didn’t know I could keep my health insurance so I dropped the coverage. I got on Medicaid easily while in Arkansas, but when I moved back to Georgia in July 2019 because of my daughter’s hiring with Emory, I had to drop Medicaid because it’s not transferable and get on financial assistance. After two years of working with a legal aid lawyer and advocating with state reps, I am proud to announce that I am covered through Medicare. I wake up every day and that’s what gives me hope because I wake up every day and I can still drive to different places I need to go. As long as I have God, my family, and my support group, I’ll be fine.”

My favorite go-to scripture is Jeremiah 29:11: “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

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