For my whole life God has been so good to me but that has been made even more clear to me in the past 12 months. I have seen him working in my life in such a clear way. Here is my story (my God shots).

I have Spinocerebellar Ataxia 2 (SCA2). It is estimated that in the U.S., only about 50,000 people have SCA2. It is hereditary (I most likely inherited it from dad) and many of the symptoms of SCA2 mimic those of being drunk, such as slurred speech, stumbling, falling, and incoordination.

Since SCA2 is genetic, I have always had it. But my journey toward discovering a diagnosis started in October 2021 when I visited a hearing doctor thinking that my balance issues may be caused by vestibular issues. After going through many tests and passing them all, she recommended seeing a neurologist. After calling a local  neurologist to make an appointment, I was told that the waiting list to see the doctor would be about 6 months. That led me to call another local doctor (Dr. Cho) who said she could see me that same week.

On the first visit, she had an idea of what my problem might be. She sent me to get two MRIs. Just one month after my visit to the hearing doctor, I received the diagnosis of spinocerebellar degeneration from Dr. Cho. I feel like it was God’s will that I see Dr. Cho because SCA2 is so rare and she figured it out almost immediately. #Godshot

Dr. Cho referred me to the Johns Hopkins Ataxia Center (I am told it is one of the best facilities to treat ataxia in the country). Since Johns Hopkins (JH) is relatively close and I am very familiar with it (I had been there a lot with my dad), it filled me with peace to know there were professionals there to treat me. I am so thankful to be able to seek care there. #Godshot

I was having no success with getting into the Ataxia Center at JH and mentioned it to a high school friend, Rob. He put me in touch with a friend of his (Ken) who is Director of Rehabilitation Therapy Services Outreach at JH. Ken helped me get into the Ataxia Center and as it turns out, he is the supervisor of the physical therapist who works with ataxia patients and would become my PT. #Godshot

In addition to having some difficulty with balance, I sometimes notice issues with speech and swallowing. I also have a lot of muscle stiffness. There is no cure for SCA2 but I see a physical therapist who specializes in the disease and do physical therapy 5 times a week. I also do other exercises including walking, stretching, core exercises, and squats (to keep my legs strong). Eventually I will walk with a cane and probably a walker. But I’m working hard to maintain the mobility that I still have.

God has been so good to me. I am blessed with a wonderful husband, other family members, friends, and co-workers. I am still able to do so much and for that I am thankful.

I know that the road ahead will be difficult but God has reminded me over and over this year that He will be with me through it all and will provide what I need.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
‭‭Romans‬ ‭8:28‬ ‭NIV‬‬