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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.