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Carol Paige

My unwanted guest arrived when I was conceived. He rode in on my DNA and set up residence in the part of my brain called the cerebellum. This is located in the lower back of the brain and controls the major muscles and coordination. 

He lived very quietly, in fact I didn’t know that he was there. About 20 years ago, in my early 60’s, he began to show his presence in many strange ways. He was causing me to have vertigo, walk slightly off balance, and causing a slight difference in my speech, like I’d had a couple of drinks. It felt like my tongue was a little thick. 

Sixteen years ago a most marvelous opportunity came to me. The Fred Hutchinson Center in Seattle was conducting a study for post-menopausal women who were slightly overweight and not overly active. It was to show that exercise and diet could reduce breast cancer. It would be a five year study of five hundred women with each participating for a year. After several interviews and tests, I was accepted. You would be chosen by computer to do: 

1. Nutrition 

2. Exercise 

3. Both nutrition and exercise or 

4. Control group 

The computer chose me to participate in both nutritional and exercise studies. I had to write in a food diary everything I ate, meeting with a nutritionist once a week. My food diary writings were entered into a computer to tell exactly what I was eating, and what changes were needed. The exercise part consisted of my going to Fred Hutchinson three times a week to exercise with the help of a personal trainer for 2 hours. I was also to excercise on my own for the additional 2 days. This was very intense, with tests along the way to see how my body was improving in strength, muscle, weight and endurance. Upon completion, my BMI (body mass index) had dropped to a great level. I lost 30 pounds, changed my eating habits, and most importantly, started a lifestyle that I would practice for the rest of my life. 

Upon my graduation from the study, my unwanted guest was making his presence a little stronger, and my symptoms were worsening. After a MRI scan my neurologist ordered a DNA test. I found my unwanted guest had a name. His name was Spinocerebellar Ataxia type 6. He even had a nickname: SCA6. He is very rare, only visiting one in 100,000 people. And he doesn’t care if you are a male or female. Now I am finding him quite greedy. He keeps wanting more and more. About 12 years ago he took away several of my talents. My typing computer speed of 80 words per minute with no errors, my ability to play piano, and my nice cursive writing. I also started to use a cane, as he kept trying to tip me over. Ten years ago, I did fall, two serious ones a month apart. I decided to start using a walker all of the time. A walker is my friend. I jokingly call it my legs. My legs have been on a cruise, a train trip, several plane rides, Las Vegas and Disneyland. 

My unwanted guest now causes me to have tremors. My speech is harder to understand. I have trouble turning pages, preparing food, and I occasionally experience extreme fatigue. I now use a wheelchair when going places outside of home. I live my life in slow motion to stay safe, and pace myself so I have very little stress. I make sure I get enough sleep as I need more now. I don’t feel I am fighting my unwanted guest. I feel we live in harmony. He cannot move to any other part of my brain. As a neurologist says, ” you won’t lose your marbles.” 

At this time of my life I am so very happy and feel very blessed. I am not afraid of the future. My family and friends are so supportive. My faith assures me that God is now, and will always be walking beside me, giving me as much strength as I need. John 14:27 says, ‘Peace I leave with you, my peace I give to you, not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.’ 

Ataxia means clumsiness of movement, or loss of coordination. It is not the result of muscle weakness. It might be used in a more specific way, to denote degenerative disease of the nervous system. Ataxia may attack the fingers and hands, the arms or legs, the body, speech or eye movements. 

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As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

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