Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, November 3, 2010

When The ALS Clock Is Ticking, Five Months Can Be The Better Part Of A Lifetime

The following was posted on an ALS patient message board a few days ago:

I've been spearheading a push to see if we can get the 5 months waiting period change when you apply for social security disability. The law reads you must wait 5 full calendar months before you receive your first disability check. I've been working hard with Senator Cathy Young and US Senator Charles Schumer. This has been 6 months worth of meetings, phone calls, etc. Please help all PALS by writing a letter to help support this change. ANYONE, can write a letter. We are asking all letters be done by November 12th.

I'm sure I'm not the only one who has been financially ruined because of this wait time experience? Any others with the same issues? Because we are a working middle class family, we are not eligible for any other type of support or asistance with anything. My husband has a job, I was the bigger paycheck, but his paycheck doesn't make up for the loss of my income, not even close. One place we went to for help told us to have my husband quit his job, then they could help us!!! How insane is that?
Here is the e-mail address to support this change: or mail to Laura Monte, 130 South Elmwood Ave. Buffalo, NY 14202. Please put in the subject line of the e-mail: Wait time for SSD.

A sample letter is on my facebook page, Deb McQueen Quinn, just print it out and sign it and drop it in the mail or copy and paste and send by e-mail. Letters, the more the better, must go to the healthcare advisor and they will do the research on SSD and then make a determination if they find just cause to move ahead to introduce a new law. If not, we will get a letter back explaining why not. I did the sample letter, provided my issues over the last 6 months during the wait time and also included my Familial ALS history. If you don't feel you want to send it to Senator Schumer, please send it to your local Senator, but, the power is in numbers and he is on our side and all ready understands where I'm coming from on this issue. IF we make it far enough, Schumer will ask for some of us to come to DC for congressional hearings on this matter. Hope.....mine is still with me!

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