Where can I get financial assistance for ALS?

2 answers | Last updated: Nov 06, 2016
A fellow caregiver asked...

My husband of 50 has been diagnosed with Amyotrophic lateral sclerosis (ALS). He was diagnosed eight years ago, however he has been suffering for twelve years. We have four children, who are dealing with this situation in their own way. We purchased a house eleven years ago when we thought that we could survive this and rehab it. Well, things did not work that way. Our roof is leaking and I am the sole financial supporter of this house. I am a teacher and make about $52,000 a year. I need help. I tried to apply for grants/opportunities and am desperately seeking assistance. Is there anyone out there who can give me some direction?

Community Answers

Daughter57 answered...

First of all, I am so sorry for your husband's diagnosis and all that goes with it.

I'm afraid I have no specific answer for you, however, have you tried contacting the ALS association for help with your husband?  They have a national chapter and numerous geographical chapters.  Check the web.

Also, I know my church does community service work that includes handyman work.  Check with your local churches.  You don't have to be a member of our church to receive help and I have to believe there are others like it out there.

Have you checked into SSI (social security disability) for your husband?  I wish I could be of more help.  I lost the love of my life to ALS in 2001.  I know how overwhelming it can all get.  The ALS association might be the best place to start.  I'm in Northeast Ohio.  Our local chapter is ALSAOHIO.org.

Patty in Ohio

Shodoshan answered...

Hi there, and I'm so sorry for what you and your family are going through.

There are a lot of amazing organizations set up to help ALS patients and their families. Patty mentioned the ALS Association - there are local chapters everywhere and if you do a google search for your area you're guaranteed to find yours.

Also, the Muscular Dystrophy Association is very helpful. They extend aid to ALS patients because of the similarity of the disease.

If your husband was in the military, the VA may be able to help. They have case workers who are incredibly good at connecting you to resources.

Also, talk to your neurologist. They can connect you with a social worker, and the social worker can connect you with some amazing resources. Social workers can be fantastic allies - they know everyone and they're not afraid to be pushy and make things happen for you!

ALS is a hard illness, and what you're doing is not easy. But what you are doing is also wonderful and compassionate, and you will never regret it.

I wish you the best and hope that these resources help you!


Former Caregiver