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KimT

Extremely helpful member
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Joined
Nov 18, 2014
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4,087
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
We all know how expensive this disease is and how it can devastate one financially. I thought it would be good to start a thread of tips for dealing with the money issues of this disease.

I know when I first suspected I had ALS, I needed to decide whether I would take my pension in a lump sum or in monthly payouts. Since I was alone, the lump sum was the only thing that made sense and, in retrospect, I'm glad I did.

Some of the things I've done to conserve money are pretty radical and won't apply to anyone but others are more practical and might be of use.

Please add your thoughts and comments.

1. I immediately started a LotsaHelpingHands site so I could get rides and volunteers for other things I might need. I gave the site address to my church so members could volunteer.

2. When I knew I needed help with indoor chores, I found a lady who was very willing, honest, and competent to help with cooking, cleaning, equipment, and errands. She only charges $12 an hour and is willing to increase hours, when necessary. I have other applications on file.

3. My niece suggested a fundraiser (have not needed yet)

4. A friend suggested organizing a meal train (have not needed yet)

5. Approach local colleges to see if any students need practical application (CNAs, etc) or would like to volunteer. Point out how good that looks on a resume.

In a radical move, I sold my condo for cash and bought a large 3/3 condo with my best friend (we each paid half). He sold his prior house for cash. He will help me in any way he can and I trust him 100%. We bought it as joint tenants WROS so he will get to keep it.

If a PALS has life insurance, look for an accelerated benefit clause. My PALS friend was able to get a benefit 2 years before he passed away. It made life a lot easier for the family and they were able to buy a van and pay for some trips.

I think one of the best ways to organize a fundraiser is to ask a friend or a relative to do it for you. If you belong to a church or social group, get them involved. Sometimes people just don't know how they can help unless you talk to them honestly.
 

Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,386
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
My husband retired in October 2014 and was diagnosed in June of 2016. If we had known this was in our near future, I would have encouraged him in the lump sum even though I will get monthly benefits for life when he dies, you are right it just makes sense.

We are blessed in that I am here with him and have solid income, I don't even know how a PALS deals with it alone. You have a lot of great tips here for the single and couple too. Thanks.
 

Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,194
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
My PALS had group life insurance with the option of converting to private individual insurance--no medical questions asked--upon her end of employment.

The office of the group life insurance gave us the phone numbers of several insurance companies. I called them. The first two said that there was no physical exam and no questionnaire involved, "but she's in generally good health, right?" I didn't answer the question, changed the subject, and never dealt with them again.

On the third call, the guy never mentioned medical, never sent any questionnaire, and it never came up, just like the law requires. We bought as much of his life insurance as he could sell us. In fact, five years later, I am still insured with him.
 
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