Ray Chandler

Yes I think my smoking was one of many contributors to ALS.  I stopped in 97 but still think it may have contributed but is not solely responsible.  There are way too many ‘could haves.’

I don’t think it is a very good measure but like Riluzole it’s all we have.  My current score is 41 but could easily be 38 or 39 depending on how I answer.

For starters – turning in bed.  At diagnosis I was answering this one with ‘slow and clumsy’.  Turns out it was the bed and not me.  We got a new bed and now the answer is ‘normal fun…[Read more]

Yes that is a SS requirement. There was a bill recently before Congress to waive the waiting period for certain cases (ALS being one) but I don’t know if it was ever brought up for a full vote.

My doctor more or less made this decision for me.  He sent my employer a letter stating that I should not be working and they sent me on my way the next day.  I started drawing STD, then LTD.  Not knowing a progression rate or what the future held I didn’t fight this.  I feel like I could still be working although some accommodations would hav…[Read more]

It took about 3 weeks to get approval with benefits kicking in 6 months after quitting work.  SS Disability and Medicare started at the same time.  No visit to the office was required.  I filled out the application online and received a phone call interview from the local office a week or so later.

Ray