Norma Lutkenhouse did not hit the pause button in her life after she was diagnosed with Ataxia. She is no longer working but she is utilizing her time keeping active and spending time with her family. She looks at her changing abilities as a way to be introduced to new interests.
My mom has Ataxia, and I didn’t think I would get it. After the first symptoms, I knew I too would be lucky enough to have Spinocerebellar Ataxia Type 10. I was officially diagnosed in 2018, however, I began to have symptoms in 2015.
I was lucky enough to work from home as an Inside Sales Rep for a medical equipment manufacturer selling service contracts for the West Coast. It was a high-stress job with quotas and metrics to meet, which I enjoyed until multiple reorganizations within the company changed it all.
Working set hours of 8 am to 5 pm, allowed daily home-cooked meals; greeting my son after school; and not having a long commute. I enjoyed taking part in my son’s soccer, window shopping at the malls, camping, long hikes with my family, and just being able to spontaneously get up and go. Towards the end of 2014, I started experiencing dizziness and became clumsy. I blamed this on the fact that I had become a couch-potato and wasn’t exercising enough. Besides, I had gained almost 8 pounds. I decided to join a women’s fit group and saw it as a challenge. I lost the pounds and started to get more active and with the encouragement of the girls, I gave running a try. It was hard and exhausting but so satisfying when I would finish a 3, 6, and 9 mile run that I became addicted to and would run when I could.
My dislike of running became one of my favorite things to do. The dizziness and clumsiness disappeared.
Two years later and after several months of high stress at work, my symptoms progressed. I felt like a failure and struggled to accept that I could no longer multi-task, think clearly, see clearly, and run. I was laid off from my job, but it has allowed me to relax and take the time to personally adapt to my new normal. I still consider myself new to this and feel lucky that the problem so far is with my legs and sometimes my speech. I try to sing out loud to work on my speech. I am an avid listener to music and enjoy everything from instrumental to some light rap. Although when your speech starts to slur, rapping can just become gibberish.
Now, I enjoy attending the same women’s fit group to stay active and keep moving. Their support is so important to me and everything is modified to my level from push-ups to yoga. I also walk with walking sticks in the desert, no long trails, but still can walk and enjoy the view and my family. I have a wonderful son who takes my arm when my legs want to give up and walks with me at the mall or the soccer field. A husband who from the time I started to have symptoms, would encourage and accompany me in my runs up until the day I could no longer trot.
There are a lot of things I have yet to try, now that I have the time. The next challenge is to ride a recumbent bike. One of my favorite quotes is from Dr. Seuss – “Don’t cry because it’s over. Smile because it happened.” I need to keep reminding myself of that as I adjust to my new normal. So far, Ataxia has taught me that normal is subject to change without notice. I am glad I got a chance to try running to the point that I enjoyed it, and now there will be new experiences to learn, adapt, and ultimately enjoy. I guess for someone, like me that feared and overthought change, Ataxia is making it easier to stand up for whatever that change will bring.
I don’t consider myself strong enough yet to be considered an Ataxia awareness advocate. I have informed all those around me and explain the best I can. I try to share everything Ataxia related on social media. If I had one piece of advice to share it would be to reach out among the Ataxia community. Learn from one another and inspire one another. It’s perfectly normal to fall into frustration, depression, and loneliness but we become stronger when we are aware and pick ourselves up every time. Who cares who is staring? Prove them wrong of their assumptions by showing them what you can do!
Thank you, Norma Lutkenhouse – what a great quote from Dr. Seuss! One piece of advice you had was to reach out to those in the Ataxia community. Luckily, there are now multiple organizations aimed at providing support to those living with Ataxia.
Hope For Ataxia – support group, raise awareness, fundraisers.
National Ataxia Foundation – support groups, raise money for research, attend the annual conference, resources.
Spinocerebellar Ataxia Awareness and Research Support Group – support and awareness.
Tri-abled Ataxians – for Ataxians who ride recumbent trikes.
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