Lisa Dix has cerebellar ataxia, which in her case is caused by an immune reaction against the cerebellum. She loves to read, sew and has even learned to dance during therapy. By joining support groups, Lisa has met many wonderful people and learned a lot about ataxia.
Hello, my name is Lisa Dix. I had never heard of ataxia before my diagnosis. I was in my 50’s and I had tingling on my left leg and I occasionally would just fall over. I went to the er and they thought I was having a stroke so was referred to a local neurologist. saw him 4 times and had many tests including 3 MRIs. He could not figure out what was wrong s0 he sent me to a university hospital and they diagnosed me with cerebellar ataxia in 5 hours (I later learned that no one read those first 3 MRIs). I stayed with this university for about one year and I felt like I was getting worse so I wrote mayo clinic a letter and they called me to come. I ended up seeing a neuro immunologist (one of 4 in the world) and he said I have an antibody attacking my cerebellum and I have autoimmune ataxia. He included my case in a study he wrote. There is no cure but my life span is supposed to be normal plus they had never seen the antibody before. I was treated with 40,000 mg of steroids and I have to take immunosuppressants forever. I do have slurred speech and have issues with swallowing.
I was very, very, bitter about the first doctor. After many years, I decided to forgive him and I feel more about peace now.
I worked in healthcare for 30 plus years and taught college for many years. I have always liked to exercise and after several years have some that can be adapted to my immobility. I love to sew and I need some help but I can do it! I like to read and love to travel as well. I have a beautiful garden where I can sit and view nature.
My father was also disabled but never thought of himself that way. He was a great role model while he was living. Because of him, we learned that we are native American and were able to join our tribe. I have many more family members than I knew of in the tribe.
I believe that we should not give up and keep learning as much as we can. We probably do not know as much about the brain as we can. Lots of new things are being discovered now. I attended a webinar about a new and amazing treatment for ALS. Hopefully, ataxia will be soon.
Try to help yourself any way you can. I have been in therapy for 8 years. I can’t walk independently but I have a service dog I walk with or a rollator. I learned how to dance or modified dance at therapy. Never thought I could do this!
Do not be afraid to try new things. Join a support group. I have met so many wonderful people. I have learned so much about myself. What I need to let go of and what really matters to me. I have more patience now. I stop to admire the world instead of worrying about small things. I do have bad days but they are fewer with longer gaps in between. Get involved! That is how I learned about ataxia.
Dwell on the positive!! Focus on what you can do!
Reach for what you want! My therapists told me they are amazed because I never give up. I kn0w that I will n0t be able to do everything but with a modification, I can do a lot!!
Your are a big inspiration Lisa! Thank you for sharing your story with us.
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