Hello, again friends…it is time to post our eighth Ataxia Profile. This time we will look into the life of Sharon White Miller. I am gaining strength by reading other people’s stories… and I hope you are, as well. One of the subjects in the personal accounts of life with Ataxia that I find very useful and interesting…is reading what they have learned and what pieces of insight, or advice, that they would like to pass on. Sharon’s story continues that helpful direction.
With that…I give you, Sharon White Miller:
I was never described as graceful. Physically and socially awkward was more accurate, and too tall for a girl. From the age of five, I grew up in Laramie, Wyoming where my dad was a professor at the University of Wyoming. Mom worked at home raising three children, of which I am the middle child. She proofread countless dissertations for Dad’s graduate students. As a child, I was shy in social situations and because education was important, my source of pride came from my grades and artistic talents. I was tall for a girl and in junior high, I was nabbed by the orchestra teacher to learn string bass. About that time my dad provided private art lessons and private bass lessons from UW instructors. Anyway, in the 1960s and 70’s I didn’t have symptoms of any disorders, I just wasn’t coordinated enough to be in sports or to go to high school dances (plus I was taller than the boys in high school). The only physical activity I really enjoyed was cross country skiing. Slipping through the quiet trails in the mountains, listening to birds and wind rustling through the trees was wonderful. Falling or sliding on my backside down a slope was fine because that was an acceptable way to do things in this sport. Anyway, who was watching? Mostly, I spent my high school years rebelling but staying on the honor roll.
In 1976 I moved to Cheyenne, Wyoming where I married and together we raised three wonderful children. After working for 10 years at the phone company headaches and dizziness were causing me to miss a lot of work. I was put on short term disability after many surgeries and eventual replacements of my TM joints. Since I could no longer talk for long periods of time, I was put on long term disability and shortly after that, I received Social Security Disability Income. The joints were replaced due to avascular necrosis (no blood supply to the bone and it dies). My skull around those joints “look like swiss cheese” according to the surgeons. A few years after, still experiencing dizziness, balance issues, and headaches I was diagnosed with Arnold Chiari Malformation and surgery was the only option given. The neurosurgeon removed a bit of my skull placing a dura patch over it, leaving me with a soft spot at the base of my skull. My kids joke about how I “go black” if I tilt my head too far back.
About 3 years ago I experienced a sudden onset of double vision, slurred speech, and an inability to walk because my balance was just gone. It lasted a few hours and I was back to normal. After a few more of these episodes I went to the ER thinking perhaps I was having TIAs, but everything checked out fine and I was referred to the local neurology clinic. The PA and I became friends over the few months she ran tests. Eventually, she gave me a diagnosis of episodic ataxia based on my symptoms and positive response to Diamox. She told me I would progress from using a cane to a walker to a wheelchair and eventually be bedridden with a feeding tube. Oh my gosh! I was so scared! She referred me to a movement disorder specialist in Denver who in not so kind words told me I did not have ataxia but a psychiatric disorder based on my gait being “not classic ataxic” and my vision “not always double”. My family was angry with his mannerisms and diagnosis over a 15 minute physical and consultation. In 2018 I self-referred to the Mayo Clinic in Rochester MN. My husband and I spent a few days in May at my first visit meeting with a neurologist as well as consults and testing with several specialists. They agreed I was experiencing ataxia but the cause was unknown. We returned in August and again in October for more tests and consultations. Because there is no obvious family history of hereditary ataxias, genetic testing was done to rule out episodic ataxia only. My neurologist suggested we stay in touch via phone, email, and video chats to save on travel expenses during the harsh winter months in Wyoming and Minnesota. Many of the tests pointed to autoimmune disorders, of which there is a strong family history of, and he arranged for weekly infusions of high dose prednisone after which we spoke again. With some positive results, we agreed to try a longterm immunosuppressant, which I am currently taking while I wait for my now yearly visit with the Mayo Clinic team. My local neurologist, who admits to knowing little about ataxia as a disease, orders my medications per recommendation from Mayo.
Today, at age 62, my diagnosis is autoimmune cerebellar ataxia syndrome, which my Mayo Clinic neurologist says is a nonspecific best guess based on my response to treatment. The episodes that sent me looking for answers are fewer and less severe. Physical therapy with a balance and vestibular therapist has been extremely helpful. My son, who was a trainer in Chicago, helps me with things I can do at home. I am on a waiting list for a brace and balance service dog.
What I have learned through the online support groups is to put aside my qualms about using the aids I have and just be who I am. I carry a long hickory walking stick in public which often elicits good-natured comments from strangers about carrying a weapon. I have a walker. Of course and most importantly, I always have the support of my husband’s arm not to mention his love. Our kids and grandkids all live in Cheyenne now and we enjoy our times together as blessings from God. Just recently, I decided to stop hiding my challenges and help others become aware of Ataxia. The closest support group is about 100 miles away in Denver, but this month I posted an Ataxia aware photo daily, made comments on how this affects me directly, and have a birthday fundraiser for NAF going on, (up to $275 as of today). It’s past time to stop making excuses for being shy and become an advocate.
Some hobbies need a little adaptation. Instead of carrying a DSLR camera and equipment I took some courses on iPhone photography and editing. Painting is difficult but a new hobby is collecting and competing in vintage and antique buttons, tiny works of art, and helps with hand-eye coordination as well as fine motor skills. Our new physical activity is riding recumbent trikes on the greenway and in the Colorado Rockies.
The biggest thing that helps me, besides my faith and family is laughter. In many situations, laughter is truly the best medicine. We all laugh a lot because life is short and feeling hopeless zaps the energy and excitement out of all the great things in life!
Thank you for sharing with us Sharon!
Until next time….
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