State Stuff

Still haven't heard from the appeal hearing but, went to Medicaid office yesterday. For those of you uninitiated to bureaucracy here's a quick primer. After filling out 20 pages of stuff and supplying them statements on everything in my life back in January for my surgery, I was denied and the case closed. Now, they can't use that info again, you must start over. But they also needed my Social Security card, which I haven't seen since I was 15. They won't accept anything else, like tax returns or passports or driver's license but, they will accept......... a receipt that says you applied for a new card. The Social Security office will give you a new card if you show them.................. a passport and driver's license.
You go back with your 20 pages of stuff and documentation to Medicaid office and they want to see.............. your passport and driver's license as well as everything else. Then, just when you think you've complied they hand you another 8 forms that you need to fill out while you're in a wheelchair sitting at a bank teller-style window. I had my niece and brother with me so that made it somewhat more tolerable. Once we have filled out those forms, they want to see new documentation to answer questions for info gathered from.......... the unusable original application. It was at this point that I asked, " If we couldn't use the previous application, how do you get this information"? I was stared at.
In the end , we got through it. Now, it was on to fingerprints. I had to go to the bathroom first so
in I go and............... EARTHQUAKE. It was a minor one, as these things go but, strong enough to empty the building and we waited on the sidewalk. 30 minutes later we were back inside, I was printed and now await acceptance or denial. And that's how that stuff goes.
In the meantime, I go to a clinic tomorrow to try the 'treatment' and see what happens. tune in tomorrow.......

Hearing

So, I had my state disability hearing yesterday. The judge seemed sympathetic to the cause as well as his assistant. Should have a ruling soon. The amount of payments may not change but should get 5 months retroactive payments. A small victory but a win nonetheless.
Getting ready to go to an alternative clinic to see about getting my DMSO/EDTA treatment administered. Otherwise, still have my brother and niece here for another week or so. It has been great as I'm needing more help to prepare meals and keep the house in order. My scooter is certainly a big help getting me around the house with less effort. More in a bit, after doctor.

Experimentation

Since there is no consistently successful treatment for this disease, at this point, there ARE lots of alternative options. I am getting ready to start one. It involves a 5 day protocol of an IV drip. I will let you know how it goes. I am waiting until after my state disability hearing this coming Wednesday. I am appealing the start date. Currently, my start date is March of 2008. I wanted to backdate it to November, which was after the last time I could work. Ahhh, bureaucracy..... Anyway, once that's done it's on to Social Security and Medicaid. WOOHOO!!!!

First post

The ALS diagnosis qualifies me for Medicare and Social Security benefits but I'm still wading through all the red tape. My friend Ricki Stein is actually dealing with all the red tape for me. I have signed up with the MDA/ALS Center and the ALS Association (ALSA). Last Saturday my brothers, Paul and Christ (who are currently visiting me) and Spencer Smyth (son of the infamous Bev and Smoother) picked up a specialized lounge chair that stands me up as my legs and arms grow steadily weaker. This is a loaner from ALSA. They have also loaned me an electric scooter until I qualify for Medicare and can purchase my own. In the meantime, I haven't decided whether I'm staying in Southern California or returning back to the Midwest. Having been here now for 30 years I feel that this is my home. While I love my blood and family in Chicago, my friends here (and elsewhere) have become family. It also is better in January. In the meantime, I am trying to organize the house so that whatever decision I make, it will be easier to execute. More soon......