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Aug 11, 2007
Hi, my hsuband is the PALS - can anyone give me advice to move the LTDSS along?
Hi Purple. Welcome to the forum. I am sorry to learn about your husband. I am not familiar with the term LTDSS. Can you elaborate? How is your husband doing? You didn;t say if this is a new DX or not...Write more when you feel like it. Cindy

He has been sick for 2 1/2 years. He was at Mayo Clinic last year with breathing problems, they diagnosed him with Restrictive Lung Disease, said never get any better, or any worse, wouldn't shorten his life, just live with it. Over the last year he has gotten worse, I'm the advocate and won't give up. Finally after the pulmonologist say him in May, sent him to a dr. to do EMG, he found abnormality and forwarded us to neuromusclar nero. He did his own EMG, and then a muscle biopsy. After the EMG, he told us probably ALS, but the muscle biopsy would rule out anything else. He told us he would get us into the ALS clinic ASAP/ The next week 7-15 we say the head of the ALS clinic at the U of Minnesota. He said he thought it was ALS but to early to tell, but wants us to stay under his care. He did additional test for Lymes, LEMS, MG, and MS, all of which were negative so it leads only to ALS.

Sorry for the long history, but I though it would give you a good picture of what we are looking at. He has speech difficulty, breathing difficult and some weakness in one arm.

SSLTD is Social Security Long Term Disability. If you don't know what all the initials are for above, just search the web and they will tell you.
Sorry to hear about your husband. As far as the disability payments, here is what I know from what my Mom in law had to do. I'm assuming you're already on SS. There is normally a two year wait for disability, but with a diagnosis of ALS, that is an automatic qualifier. There are forms that have to be sent in, usually by a doctor who makes the diagnosis, and then you get to hurry up and wait. Wish I could give you some better news on how to speed things up. I'm sure somebody else on this forum will probably have more specific info. God bless. Tom

I would first get the neuro to give your husband a definitive diagnosed of ALS. Then he would be automatically approved for SSDI. You would still have to wait 5/6 months for payout, but that is better than 2 years. He would also qualify for Medicare.

You need to speak with the social worker at the ALS clinic. She can help you with this.

Please let us know what you are going thru and maybe we can help.
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