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New member
Mar 5, 2008
Loved one DX
My dad was diagnosed about a year ago after suffering symptoms for 2-3 years. Right now he has no use of one arm and car barely use the other. He has recently noticed some breathing trouble. His doctors say he is deteriorating fast. He has noticed a big deterioration in his good arm in just a weeks time.

He has already suffered thru the process of getting disability approved and just got a letter that despite 3 doctors claiming als, the judge classified him as only limited use of his arms which will not allow him to get medicaid for 30 months.

I worry about his depression. He feels useless and like life is over. I'm sure when a doctor tells you that you have 3-5 years to live that really hits hard. He hates life, his attorney, the judge, everyone around him for not knowing how to help him, etc.

I am scared because I hear so many stories, those that pass quickly, those that suffer, etc. He is full of anger, and it's hard for my mom and sisters to be around him. I am married with two small children and sometimes I don't want them around him because of his yelling, cussing, etc.

He use to be a strong Christian, he was my strength, for the whole family, and now that he is suffering none of us can be the support I know he needs. What can we do? I don't want to lose my dad. He refuses anymore tests because he hates paying for their research and getting poked and prodded.

I hate this, I hate the system for taking so long to get him thru the disability program, the judge for his decision, anyone that angers and upsets him and makes his life worse. He had hoped for some back pay to help care for the family and lost that too. Why him?
Something is terribly wrong in Texas!

If you have a diagnosis of ALS, Social Security has what they call the TERI. This means that the person is terminal and they are automatically approved for SSDI and Medicare. It will still take 5 months from time determined disabled to receive payments. And Medicare will start 1 month before SSDI kicks in.

What kind of lawyer could not figure that out? Go to the Social Security site and look up TERI, you will find ALS listed. Some info here:

Is your Dad going to an ALS Clinic? If so, they have a Social Worker that will be able to help you with this. Also, you need to contact the ALSA. I'm sure they will also help you.

This is unbelievable - well no it's not. Some people just don't understand what the word terminal means. Been there done that!

Please go into a little more depth about the situation if you can. We would like to be able to help you. There are others here from the great state of Texas!

Very sorry he and your family are going thru this!
Hi chizra! I am so sorry for the problems you guys are facing with this damn disease. I cannot understand why your dad has to have an attorney, or a judge to get some financial aid, when he has already been handed a death sentence. 30 mths,Jesus, even 30 days sounds like a long time, if you ask me! Have you treied to contact ALSA? Your dad is terminal, it is a shame they are turning him down, or making him wait. When my son was diagnosed'ed his social worker at the hospital helped him with his paper work, and he started getting his checks almost immediately. It didn't take that long for him to get his checks! I hope we'll be hearing good news soon. May God bless you! Will be praying for your dad!

Hi chizra! It's me, Irma, again. God, I am so angry because these people are not doing anything for your dad. First of all, I don't think, I KNOW, he does not need a damn judge, or lawyer when he's already been diagnosed'ed, and it happens to be "terminal"! What's wrong with those people? Sawdust in their damn heads, or what? Linda Richardson is with ALSA, she is a super lady. I don't think, I KNOW, she will be of some help. Tell her about the nightmare you are experiencing with them turkeys! Her email is: [email protected] (no period or dot after org) Their phone number is: 713-942-2572 or 1-866-778-2572

chizra, just tell Linda that I (Irma, Rudy Cantu's mom) from Tomball gave it to you. She'll remember me. Again, she is all heart! Good luck, and God bless! The ball needs to start rollin' ASAP! ALS is very, very unpredictable! Keep us posted, dear!

Do you mean Medicaid...or Medicare? Medicaid is income-based, but Medicare should kick in 6 months after disability eligibility, regardless of income. The Social Security office is supposed to date the payments of SSDI back to the onset of symptoms for ALS, even if that's long before the official diagnosis. Then Medicare comes 6 months after that. In my mom's case, the first disability payment was really large because it covered a period of almost a year.

And yes, the TERI law makes it mandatory that SSDI/Medicare will be paid for people with a diagnosis of ALS (and PMA, for that matter). You might get the runaround at first, but if you cite the law and hand the person at the SS office a copy of it, they won't argue you.

As for the attorney/judge, I am assuming that you appealed the Social Security ruling. Is this correct? I hope that you will contact the ALSA representative to get some assistance. Good luck! The whole process is eye-opening, to say the least, and by the time you are finished, you will know more than you want to about how messed up the US healthcare system is.
Thank you!

Thanks for your support, advice and information. I will pass this info to my mom since she helps him with the attorney, etc and she knows all the little details of his case. I think it would be great to contact and ALS group instead of just getting info from the doctors. They aren't that great of a help. All they do is hand you a pamphlet with info on ALS.

I am glad I found this group.
Please let us know how it goes form here with your Dad! We are here to support and help in any way we can!
Hi Chizraeyes, I am glad you decided to join us but sorry for all your dad is going through. He is understandably angry: he is losign his abilities, his life, and getting a run around that he doesnot deserve. Hopefully things will settle down for all of you soon. Cindy

If you contact the ALS Associate they will actually call Disability and facilitate your father getting approval faster. They are awesome and you can find them at I contaced them a while back and they really went out of their way to help my Dad get this taken care of. There is NO reason why he should be denied disability or SSI and they should have to backpay him, again the ALSA KNOWS this stuff and they are capable of helping you out. Contact them ASAP! :)
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