Follow-up

After I posted yesterday’s blog, it became apparent that there were a few more questions that people needed answered. Hopefully, my next post will shed some more light on my condition.

  1. It is genetic, and there is no cure. There is currently a great deal of research being conducted, and there is always the potential that a treatment will be discovered. Although it isn’t possible to rewrite a person’s genetic structure, there is always the potential something will be discovered that lessens or near eliminates the progression of the disease.
  2. I am aware of clinical trials that are being conducted, and I do plan on participating in some. I am looking at some programs at the University of Chicago, the Mayo Clinic, and the University of California. I will not, however, participate in anything involving embryonic stem cells. Quite frankly, I am not worth the destruction of human dignity.
  3. Although I have only recently begun to speak about this, I have known for some time. I wanted to tell people what I knew, but it felt selfish. That might sound strange but I know too many people with immediate and more serious medical problems, and they have a real and present need for assistance. I will ask for help when I need it…but that has not yet been the case.
  4. I have no idea what God has planned for me. The prognosis of this disease is 10 to 30 years from age of onset. That’s right…10 to 30. I am about 5 years into that right now, and I do feel certain aspects are progressing rather quickly. But, as I have said before, every instance of this disease is different.
  5. My resignation from St. Monica was, in a sense, a preemptive strike against potential future difficulties. I only left because another opportunity presented itself that was ideal for me, and might not have been available in a few years. I am also viewing this as the last job I will have, and I wanted to make sure that I could still perform the duties if I am in a wheelchair or differently-abled.
  6. Some of my closest friends have enrolled my name with the community that is praying for the sainthood of Blessed Mary Angela Truszkowska. I am actually blessed enough to have one of her relics at my house. More information can be found here: http://feliciansisters.org/beatification.cfm?lang=E

Thanks again for reading, and for the messages you have sent. After this message, my ataxia posts will be far less frequent. I will, however, have a lot to say about the great love in my life: God.

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.