Brian G

Back in October of 2024 I was managing a hotel restaurant and came down 2 steps and just kept going without the ability to stop. I finally slammed into a stone wall and sank to the floor. I knew that in the back of my mind I was thinking that this is a symptom of something bigger. As I was going through some tests at the resort clinic I started to look back and ask myself questions. Was that vertigo week back in July really vertigo (in which the pills they gave me just made me sleepy). Was the slight dizziness I felt from time to time when moving fast and changing directions suddenly a symptom? I went to my primary doctor who did some vertigo tests, then some balance test as well. We talked about my family history with Ataxia as well. We then made several appointments and referrals for testing.

A couple of days later I had a conversation with my aunt, the only living relative that also has SCA6. I talked with her about what was going on and what test I had already done. She also informed me that she had had a genetic test done recently and should be getting the results very soon (genetic tests are the most conclusive way of getting a result for this disease). The results were shared with me, then forwarded to my doctor to get a referral to the same doctor my aunt uses.  During that time my symptoms were getting worse and starting to impact my daily life.

With the thought that things in my hectic life need to change, I started thinking about changing jobs and careers. At the same time, I was dealing with my own anger about what was happening to my body, and to the life I had planned out. Needless to say, a couple falls later and some hard weeks, I changed jobs and the referral appointment that I had been waiting for happened. On 3-24-25 Ricky and I traveled to Denver to meet with Dr. H. Great two-hour appointment and very knowledgeable about Ataxia. Lots of blood work taken and about a month of waiting.  Those that know me, I am not patient when waiting. During that time, I started an exercise routine and different meds and vitamins.  The Genetic test came back, and I do have SCA6. By this time, I was not surprised. Although, seeing it on paper was a little hard. It was like 5 months of worry, concern and anger just came at me, then left just as fast. Now is the resolve and quest for a new future.

The first step is doing everything recommended by my doctor. His words “We are doing these steps to keep you out of a wheelchair as long as possible.” While I was waiting for the diagnoses I tried acupuncture. The acupuncturist asked me a question that has lingered with me and assisted me in setting up a purpose for the future. “What are you going to do knowing you have this disease?” My first response to him was, “slow down and enjoy life”. Then I reminded him of a phrase I have been using for the last three months, “Does anyone not think I can’t rock a bow tie and a cane”. My sister and my husband have listened to me talk about how to make a difference and have added their thoughts too. We are starting work on creating a blog about my favorite interest which is cooking. As we are developing this, I am realizing that this will be helpful to anyone with a neurological ailment. I am learning rather fast what I can do and what my limitations are. Being the person who always thinks the glass is half full, I am not willing to surrender, I am finding ways to do my passion and bring joy to my family and friends. I may have SCA6, however, I will not let it stop me from living my dreams.