I haven't been around much lately. I have posted a few pics of some projects I've done over in the flat work forum, but that's about it. As many of you know, life has thrown me a major curve ball and I'm having a hard time dealing with it. I'm doing the best I can, but it's tough.
I've been diagnosed with Late Onset Tay Sachs disease. It's a very rare disease that has no cure and not even any treatment available. There are three forms of Tay Sachs, infantile, juvenile, and late onset. The infantile and juvenile are fatal, where late onset generally isn't. I'm one of only roughly 100 cases in the entire country! I've known since diagnosis that a wheelchair was a possibility. But at this point, it's looking like more of a probability.
A few months ago, I found an online support group for Tay Sachs and it has been very helpful. But most of the members are parents of children with the other forms of the disease. About a month ago, I discovered a support group for just late onset patients though. In the past few weeks I've "met" (online) at least ten of the other patients. The scary part is that every one of them are in a wheelchair now. Some have been dealing with the disease for 10-20 years. It's not fatal but debilitating. Unfortunately it appears that the disease is progressing faster than I had hoped. I have had people telling me for over a year to file for disability because it can take up to two years to process and start collecting benefits. Well in doing some research on the Social Security web site, I found that there is something they call the CAL (Compassionate Allowance List). It's a list of diseases that have been "fast tracked" as far as disability goes. Well Tay Sachs is on the list. The SSA web site says that if you're afflicted with a condition on the list, that claim processing can be done in as little as just a matter of days instead of weeks or months. My step father has a friend who is a lawyer and he told her what was going on with me and she said that my claim should be a "slam dunk" and there shouldn't be any problem getting approved.
I've been hoping to put it off until it was absolutely necessary, but it looks like the time has come. I'm in the process of getting my ducks in a row and I'm going to have her check over all of the info. When it looks like it's ready to go, I'm going to file. Hopefully my claim will be approved. If so, that should take at least SOME of the stress out of my life at this point.
Take care all!