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:

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.

This entry was posted in Ataxia.

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