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LeoGreene

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PALS
Country
US
State
California
City
Pomona
A question...
I was diagnosed in August and am still working full time. The disease is progressing and my speech is getting really thick, my right arm is at about 20 percent and my legs are getting unsteady. My bosses say I can stick around and get paid for as long as I want.
However, I don't want to end up in a bind for equipment and waiting for Medicare to get approved when I qualify for SSDI. I may need communication equipment before then. That can take five or six months, I hear. So, I'm not sure what to do. The job provides more income. But my Blue Cross only covers $2000 in equipment costs per year. Any suggestions?
 

Al

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Joined
May 25, 2004
Messages
7,960
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Diagnosis
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Country
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On
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Hi Leo. I'd call the local chapter of ALSA and see what they will help with. LA Dave is in California and may be better able to advise you on what Medicare does and doesn't cover.
http://55jer.com/randysalsmanual.htm#COPING_WITH_ALS

Also if you go to this website Randy's Manual for living with ALS at the bottom is quite a bit about SSI and Medicare that might be of use to you. AL.
 
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LeoGreene

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thanks

Thanks bunches. I'll check it out.
 

Nita

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Nov 16, 2006
Messages
10
Reason
PALS
Country
england
State
England
City
liverpool
My mum :confused:

--------------------------------------------------------------------------------

What can i say my mums been having symptoms of mnd 4 over a year now she chokes on everything her weight has plumitted to a mere 8 stone she was diagnosed in june with mnd she seems happy enough but cant sleep or eat fasten her coat carry her bag everything is a struggle the doctors say dont try to explain the ilness to her why go with feeding tubes and masks only to prolong the illness has she much time left.
I love my mum what do i do ive never cried so much in my life shes just so brave shes only 64
 

hboyajian

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Lost a loved one
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Nita, My dad is getting a feeding tube, and he is 84 years old. Your mom potentially has several years to be with you and feel the love of her family, if not much longer, with a routine procedure such as the PEG tube, and possibly some breathing assistance. The key question here is what does your mom want? It is my opinion that she has the right to know about her condition and make decisions for herself, based on her own personal needs and wishes. I would get another doctor who has more sensitivity and understanding of people's humanity if this is possible.
 

Al

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Joined
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Messages
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Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Nita. Your mum doesn't have much time left if the doctors are content to let her starve to death. Too often they write us off because they feel we won't have THEIR idea of quality of life. Has anyone asked your mum what she thinks. Keeping her in the dark is doing her a disservice. Tell her what is wrong with her and what the options are. She just may surprise you and rally. AL.
 

CindyM

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Thanks, Leo and AL for the discussion on when to go on disability. It is exactly what is on my mind these days! And thanks for the tip on where to find answers! I Appreciate it. Cindy
 

Bill60

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Nov 29, 2006
Messages
19
Reason
PALS
Country
US
State
Texas
City
Willis
Disability

Leo, I'm really sorry that you have this horrible disease.
After I was diagnosed, I fought for a year to keep working. I now regret that, I wish that I would have gone on disability as soon as working and talking became difficult for me. I also believe my working probably sped up the progression of the disease. Use what physical strength you still have for yourself and your loved ones.
 

Nita

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Joined
Nov 16, 2006
Messages
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Reason
PALS
Country
england
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England
City
liverpool
Hello again thankyou for your replies the nurse came to see my mum today and the dietition she has put 3lb on:-D we spoke
about the food peg my mum said she wouldnt like it.
In rare cases the mind can be affected by mnd which is happening with my mum she does get a bit forgetful and is sometimes like a child she tells the doctors shes not sick and goes on bus rides into town only to come back again 2 or 3 times
a day. Her quality of life is already changed all we can do is
take each day as it comes.
 

CindyM

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Thanks for sharing that, Bill60. I never thought about how I would feel if I used up what little energy I have on something other than my family. I am still conflicted, though, since going to work right now keeps me focused on stuff other than myself. It is hard, though, to find the physical stregnth to put in a full week. THis is one of those things that will work itself out soon, I suppose.
 

notgoingtotell

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Joined
Sep 3, 2006
Messages
6
Reason
PALS
Country
US
State
California
City
Los Angeles
unsolicited advice...

Leo, if BC only covers $2000 in equipment a year, it seems obvious to me (an insurance attorney) that you should get some equipment THIS year and some next year. It's now Dec. so talk to your neuro and see what he recommends.

You might call BC, too, and see if your understanding is correct. That seems like an odd limit to me.....
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
LeoGreene said:
A question...
I was diagnosed in August and am still working full time. The disease is progressing and my speech is getting really thick, my right arm is at about 20 percent and my legs are getting unsteady. My bosses say I can stick around and get paid for as long as I want.
However, I don't want to end up in a bind for equipment and waiting for Medicare to get approved when I qualify for SSDI. I may need communication equipment before then. That can take five or six months, I hear. So, I'm not sure what to do. The job provides more income. But my Blue Cross only covers $2000 in equipment costs per year. Any suggestions?

Hello Leo,

I'm not sure how it works in California, but in Michigan,, you will not qualify for SSI as long as you have a 401-k plan. So before you are forced to quit your job and end up like me. ,, you may want to make sure your money is working for you ,, not against you. So you may want to also look into transferring it someplace different or pulling it out. Until mine is used up,, i don't qualify for anything except S.S. disability and the disibiliy from my shop.Cause i supposedly have too much money at my disposal. In reality,, i get 490.00 per month from SS. And if i pull any of my money out of the 401-k plan,, i end up lossing 30% of it each time because i am not old enough to pull it out tax free. Out of the money,, i do get i have to buy BlueCross BlueShield, (Medigap). In order to have doctor and hospital coverage. So please do your homework,, before you fall threw the cracks in our health and retirement system.

Love and Prayers
Marlo
 

TRACY22

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Joined
Jun 5, 2006
Messages
82
Reason
PALS
Country
US
State
WA
City
FEDERAL WAY
Mario please ck again

You need to get a review of your government benifit vs your co. disability from another person. You have a few sources of income that combined do not work to your benifit With a better Social Security person you can get more returns. I am not giving specifics as each of us are different but what you have stated does not come close to my encounters with others.

The 401k also has not been even asked by SSI when determing entitlement.

A good thing I found was I can use 401 $ FOR medical needs and maintenance of my home WITHOUT penalty.(i still would pay taxes at my current yrs rate) THUS i can use to modify my bathroom and get a new roof.

NOT picking on you Mario but many read our posts.
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
TRACY22 said:
You need to get a review of your government benifit vs your co. disability from another person. You have a few sources of income that combined do not work to your benifit With a better Social Security person you can get more returns. I am not giving specifics as each of us are different but what you have stated does not come close to my encounters with others.

The 401k also has not been even asked by SSI when determing entitlement.

A good thing I found was I can use 401 $ FOR medical needs and maintenance of my home WITHOUT penalty.(i still would pay taxes at my current yrs rate) THUS i can use to modify my bathroom and get a new roof.

NOT picking on you Mario but many read our posts.

Hey Tracy,

No need to apoligize for your reply. I'd love to get more money , as i'm sure everyone would. But i have checked into this,, and was sent a letter,, from my branch of the SS. stating that because of my age and number of years worked,, this is what i get. And because of my age,, i will be penalized for pulling the 401-K ,, out early. Their letter did tell me, that i could use my 401-K to pay off medical bills, or get house payments,,,, up to date without the extra penalty,,, ONLY IF,,, i was in jepordy of losing my house because of it. So if you are finding the system ,, working better for you ,, and those you know.,,, i'm happy for ya. But it's not the case for some of us. I am grateful for what help i do get from them,, but this is not the way i saw my life going,, before this , disease happened to me. Maybe between the two of us,, we can at least ,, make sure that others do their homework before making any big decissions that will affect them the rest of their life. All i know is,, what i wrote, has been my experience with the Goverment.

Hope you all have a good day, and that more of you find Tracy's info to be what you experience, but i can assure you,, it will not be like that for all. My own sister,, has received (back pay) from the Gov. three times that i know of,, to the tune of Thousands of dollars. Now i am happy for her,, but it sure has not happened to me.

Love and Prayers
Marlo
 

Beebe

Distinguished member
Joined
May 2, 2006
Messages
319
Diagnosis
4/2006
Country
oce
State
new jersey
City
forked river
Leo

Hi there, I do know that a law was put into effect a few years ago that ALS patients are approved the day of diagnosed and there is a maximum of 6 months to receive your first payment and back months are retroactive. There is a link about this a young couple the husband had ALS and they went to Washington and fought for this and had it approved. I'll keep searching. Medicare also goes into effect at the same time. My Best to all, Beebe
 
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