Time to Talk About Ataxia

I have been pondering ways to share this with everyone, and it is apparent that there is not an easy way to do it. Many of you know this already, but some will be hearing this for the first time: I have Spinocerebellar Ataxia.

Spinocerebellar Ataxia (SCA) is defined as a progressive, neurodegenerative disorder. Essentially, my body produces an abnormal protein which compromises the nerve cells in my cerebellum and spinal cord, causing their eventual degeneration. The result of this is a loss of my motor skills, including my ability to walk and my ability to speak. Most persons afflicted with the illness die from cessation of breathing or a heart attack.

One of the unique characteristics of this disorder is that it is so rare and almost every case presents itself differently (there are only 150,000 known cases in the U.S.). The truth is, I don’t know how this will impact me in 6 months, let alone 5 years. For now, these are the issues I am dealing with:

  • Walking down stairs is very difficult.
  • Carrying liquids is impossible – drinking without a straw is difficult.
  • Carrying heavy objects causes me to lose my balance.
  • I frequently bite the inside of my mouth.
  • I can only run in very short bursts or I will trip.
  • I cannot walk in a straight line.
  • I cannot genuflect without holding something.

Remarkably, I can still play the piano. I also consider this entire list to be mild in comparison to the medical difficulties others are facing. I will admit that they make everything I do a bit more tiring and take a bit longer, but I am surrounded by people who love me dearly and give me the support I need. Furthermore, they are mainly inconveniences, and they generally do nothing to prevent me from doing what I want to do.

Most people who find out about this ask me what they can do for me. The greatest gift anyone can give would be prayers for my family. Personally, I have accepted this and I see this as an opportunity to better myself and those around me. However, I know that my family, especially my wife and children will need prayers and support.

Thanks for reading.

This entry was posted in Ataxia.

One comment on “Time to Talk About Ataxia

  1. preciousone8 says:

    Jason, Thank you for educating us all and for the helpful breakdown. At this time in my life I see no reason to hold back on my heart. Life is short. You are a GIFT. Thank you for your friendship, your faith and example at all times. Your marriage and family are a blessing to everyone- especially to ours. I unceasingly pray for you and have extraordinary hope for you to surpass the numbers. You are all a part of my monthly novenas. May you feel healing love and prayers for all your intentions. You and Nicky are a loving example for all. If God moves something into your heart that would inspire you to share what else beyond prayer we can do- please have confidence I would do anything I could.

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