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SandraL

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Friend was DX
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Dixieland
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I have a friend diagnosed with ALS in January this year. His thumbs don't work, his balance is pretty bad (I think he needs a walker), and doesn't have energy to do very much. His legs are affected to the point where I'm just not sure how much longer he'll be driving. It seems as though all he can do is the required self-care things-- eating, dressing, etc, as he lives alone, no girlfriend, no children.

Something must have happened with his family, because from what I understand from taking to a niece's friend is that his family (mainly his 2 brothers) have no intention to help him in any way. They live very far away and apparently feel they've lent him too much money already. He has no family in town. His other friends don't appear to be stepping up to help him much. There doesn't seem to be any plan in place for him at all.

Money is a problem for this guy. He lost his job several years back and has probably spent all his savings. He is on Social Security and is receiving benefits, so that's good news but from what I gather ALS is very very expensive.

What happens in this situation? :-(
 
Well...what state are you in? You say he is on Social Security. Is he on Medicare and/or Medicaid?
 
Is he a Veteran?
 
I went to my first clinic visit two months ago. My wife drove me into the city, NYC. I'm on Medicare and supposedly that will cover all costs. Starting last week, I have had a parade of daily visits from: a nurse, social worker, Pt, Ot, and speech. They (Columbia U.) set this up. If he can find a ALS clinic or MDA association they will set up transportation for him. It's frightening being alone. I wish him luck
 
We would love to help you help another PAL but we need more information to do that :] Waiting to hear from you.
 
Unfortunately he's not a veteran and not can't have medicaid, because he makes too much from SSDI. which isn't much. I'm not sure exactly what he gets from SSDI but it's probably between $1000 to $2000.
 
Sandra,

I am very sorry to hear about your friends diagnosis and his personal circumstances.
If you would let us know where in Florida your friend lives we may be able to help provide you with specific resources for you to contact.

Thank you for being there for your friend.
 
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Thank you all for your responses. He lives in Vero Beach, and has a great Dr. so I think medically he's okay. He knows about the ALS Assoc. also. I know there are handicap vans to take people in wheelchairs. I was wondering more about the future but I and his other friends can't provide all that he will need. I think I've asked a question that no one can answer.

Thanks so much
 
Hi Sandra.

Sadly, your friends' predicament is not an isolated one so to help get answers I would suggest that you or your friend contact the University of Miami. The Neurologist who runs the MDA ALS clinic is Dr. Varma. His nurses, Gina, Julie and Graciella are awesome and I know they would be able to help with options or provide your friend with other contacts who can. Also ask them for the contact information for their MDA ALS social worker. The social worker should definitely be able to answer your questions and what options are available. These nurses also interact with an organization called the ALS Recovery Foundation which may be able to help so ask them about that resource too.

In our area of Florida we have public transportation for the disabled called SCAT Plus. They will send a van with wheelchair lift right to your front door to take you anywhere you want to go for a very low fee. We live on the other coast from your friend so I'm not sure what the equivalent is called in Vero Beach. If Vero Beach has public bus transportation then by law they have to have a service for the disabled too so call the bus company for information.

Senior centers, churches and Hospice are other resources to check for in home care givers .

--------------------------------------
husband has ALS - diagnosed 11/1997
 
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My PALS is in Melbourne, I'll check what we have here.
 
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Here in Melbourne, we have SCAT too and they likewise will transport people in wheelchairs:
www.ridescat.com/specializedservices/adaparatransit.php"]http://http://www.ridescat.com/specializedservices/adaparatransit.ph[/URL]

www.ridescat.com
 
Thanks so much, I'll look into all that. :)
 
Laurie that link didn't work and when I tried to modify it, it got worse. Can you try it again.

AL.
 
Great link but as someone who has spent a lot of time in the bush looking for animal poop aka scat the acronym is amusing.
 
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