Imagine yourself drunk; slurring your words, stumbling around everywhere. Imagine having no judgment of your surroundings, walking into walls is normal; totally sober. Life with ataxia is funny ain’t it.

Spinocerebellar ataxia (SCA) is a group of inherited brain disorders. It affects your cerebellum, a part of your brain vital to coordination of physical movement, and sometimes your spinal cord. This inherited condition worsens over time and causes specific problems with coordination. https://my.clevelandclinic.org/health/diseases/24077-spinocerebellar-ataxia

Growing up I had a pretty normal childhood, naive to our past family generations with ataxia. When we visited my moms family in North Carolina, we visited my grandma in the nursing home but I just thought she was sick. She couldn’t walk or talk I figured that was where she needed to be to get the right help.

Mom was a normal SAHM I had no idea it was because she couldn’t really work. She came down with Ataxia but I was still naive to the generational curse of getting ataxia passed down. We all had to help her go to the doctor, therapy or grocery shopping. When she got diagnosed they told her we all could have a chance of inheriting this disease but only one of us. They obviously did not have as much technology as we do these days, like the internet. Internet is my go to for everything.

About 10 years ago my oldest sister was diagnosed, I was hoping this would stop but nope it didn’t. We thought since she came down with this we were in the clear. It was when my other sister was diagnosed a few years later and as soon as I started showing signs I knew I was screwed.

My sisters and I all have Ataxia! Great!

I knew what the outcome was of my diagnoses but just wanted to be sure got a appointment with a neurologist. My future was starting to look depressing and sad. I didn’t want to loose independence. But as time went on I accepted the diagnosis and embraced it. 

Going to the gym, working out and keep moving as much as possible will help me keep the muscle. I try to stay in shape, I might be handicapped but I’ll look good doing it lol. I also feel as if being overweight would make life a little more difficult for me. So staying in shape is a must for me!

Being able to be a wife and mother normally has been a blessing. Just trying to enjoy my grandkids the best I can as long as I can.

I really don’t even want to tell anyone, because I hate anyone feeling bad for me. I don’t need anyone to try and do things for me to make it easier, I can do ANYTHING it may take longer but it gets done. Literally may be unstable the entire time but I can do it:)

If you can take anything away from this is; don’t judge anyone. You have no idea what someone is struggling with or dealing with.

6 Comments

  1. You are an amazing strong woman that I’m proud to know!! Keep positive!

    1. Thank you so much!! Being positive is all I know lol

  2. Lindy,
    I’m so sorry to hear this. I was told only the oldest got this disease. I’m praying for you and your family.
    Sheila

    1. Thank you it just got us all but only the strongest can deal lol

  3. Thank you for sharing! That must have been hard. You’re strong, inside and out.

    1. It was definitely I don’t want people to see or judge but people need to know. I haven’t really told anyone except family in 6 months. Thank you!

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