In this week’s Faces of Ataxia blog post, Billie J. Mattingly shares her Ataxia journey and her positive message.
My journey has been a long one. I have been searching for answers since I was in my teens. I am now forty-three and found my diagnosis in 2019 of Ataxia (SCA).
When I was in my youth as a nineteen-year-old, I experienced nausea and extreme fatigue. So it was after I graduated that I started to feel the effects of the disease. At that time I didn’t know what was going on. I went from doctor to doctor, trying to find answers. I had a multitude of tests, and tons of blood work done. Everything was coming back with negative results.
I was at my worst when my dad was falling ill with COPD, who was also diagnosed with Parkinson’s. Knowing what I know now, I think he may have also had Ataxia along with it, as it is hereditary. Emotions are a big part of being able to cope with Ataxia, and I have learned this from living and coping with my own Illness while he was dying with his.
I was having trouble walking and keeping my balance, my limbs were failing me, (they would go limp at any given time) and my gait was described later as being Frankenstein. I was having pains all over my body, I had tremors daily and was constantly fatigued. I kept a sick book of my daily pains, which is horrible to try to read because my writing was so bad.
I was at my worst at that point and was desperately seeking help. I went from specialist to specialist, finding no answers. Most doctors I saw were not very caring or understanding of my situation. They would tell me it was all in my head, or they would push me off onto another doctor. It was disheartening, but I pressed on. I was determined to find out what was going on with me, regardless of the outcome.
The entire time that he was sick, my problems got worse. There were days I could not get out of bed I was in so much pain and riddled with fatigue. I could not even be in the same room with him at times, simply because my body would not let me. There was one time when my cousin came to me and told me that Dad wanted me where he was. I could not get up, so he carried me to where he was, and I laid with him and my mom in their bed. I don’t remember anything after he brought me in there. His just bringing me in there wore me out. I think I fell asleep. But my Dad knew I was in there and he was happy that I was in there with him. He passed in 2010.
After he passed, my symptoms lessened to where I was actually able to hold down a job. In 2012 I had a job for four years as a janitor, then I had another job, where I was until 2020. Now I am looking into getting my disability. I was able to keep up with my workouts, walk with minimal gait, and had minimal pain. Even the wooziness was gone when I bent over. I have always exercised and loved to create. Within those years that I was able to work, I kept up with doing the things that I loved to do. I kept writing, I kept making and selling jewelry, I kept exercising. Later, I found that working out was a necessity for Ataxians to keep their mobility. I have been doing that from a young age, that may be part of what helped me. It was like I was almost a normal person, and I was loving my life.
When I was doing better, I gave up the search and just took each day as it came. I still had some pains, and fatigue, along with painful neuropathy that came after a long night of work. In 2018 I had an anguishing pain in my back. It hurt so bad that I was crying. I thought there was something wrong with my kidneys. I went to my family doctor the next day and was told I had scoliosis. He wanted to see how I walked without my shoes and he diagnosed me with Ataxia. He referred me to a specialist in Lexington, Kentucky to find out what kind. It was there that I got my diagnosis of Spinocerebellar Ataxia (SCA). I never went back to find out what type, I didn’t feel that It was important to find out. There is no cure for any Ataxia, only treatments. So I wasn’t worried about finding my type. What Is crazy about my diagnosis is that I was diagnosed years before my initial diagnosis of Ataxia by my family doctor who sent me to a specialist in Owensboro. That specialist told me he didn’t think it was Ataxia. I asked him what he thought it may be and he said he didn’t know. So all kinds of tests were done that led nowhere. He was just the wrong neurologist for me. That was in 2010.
Now today writing this in 2021, my illness is getting worse. I am unable to work, I can walk unassisted (but wobbly), I can shower; but not alone. I get fatigued easily, and can’t do my workouts as often or as much as I would like. I do squats and other exercises at random when I am in the kitchen. I am currently seeking my disability, which I have been waiting on since the middle of 2020.
Right now I do things that keep me motivated and keep me moving. I still make jewelry, I create and design my own ads for my jewelry page, and I write when I can. It is important to stay moving and stay positive with this disease. I have learned that if you focus on the negative and worry, this disease will get the best of you. To anyone with this disease, I would say to stay positive, keep moving and find joy somewhere in your life. It could save you.
Thanks for sharing your story, Billie!
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