Question about ALS progression? How much time?

[sadiemae]

You say that he is not in a wheelchair yet. You should really think about getting one for him NOW. They are expensive, but covered by medicare(80%) and they can take a long time to get. Many PALS die due to injuries suffered in falls. Also, one bad fall can really speed up progression. You should be able to Private message people, sometimes people have it set up to only receive messages from people they are "friends" with. Just click on their name, and you will see if the option is available. Click in contact info. Also, you can post on their visitor page as well.

 

[Just A Guy]

You say that he is not in a wheelchair yet. You should really think about getting one for him NOW. They are expensive, but covered by medicare(80%) and they can take a long time to get. Many PALS die due to injuries suffered in falls. Also, one bad fall can really speed up progression. You should be able to Private message people, sometimes people have it set up to only receive messages from people they are "friends" with. Just click on their name, and you will see if the option is available. Click in contact info. Also, you can post on their visitor page as well.

Thanks for the info. How does medicare work exactly? Is everyone eligible for it that has a disability?

 

[sadiemae]

ALS is classified as TERI, which meana SSDI and Medicare is granted after a 5 month waiting period after D X and or first month of not working. Medicare for other disabilities doesn't kick in till 2 yrs after SSDI is awarded.

 

[bob_s]

For me, SS office had just about everything wrong at first in my application for SSDI starting with the wrong diagnostic code. They didn't bother to tell me that. So keep on top of it.

 

[dbltree]

For me, SS office had just about everything wrong at first in my application for SSDI starting with the wrong diagnostic code. They didn't bother to tell me that. So keep on top of it.

Do you happen to know what the code should be Bob? Just preparing to go SS office in coming weeks so want to have all my ducks in a row. Any advice appreciated!

 

[sadiemae]

The code is TERI, for terminal. Sucks, but that is it.

 

[momap53]

You can fill out paperwork online at the SS website and save it so that your "caseworker" can call it up when you go in for your appointment.

 

[bob_s]

Paul,

The SS office had my diagnosis as "MND" instead of ALS. No fast track for MND. This despite SS office having the contact info for 3 neurologist who each diagnosed ALS.

After I finally found out about that holdup, and about 3 months after my application, they get around to asking when I last worked. You wait 5 months or some number of months since you last worked before ssdi starts.

Keep in mind that all that information was on the form I filled out online and the totally redundant paper version they sent a month later (with the warning that I had better return it within 15 days or my case would go into SS limbo).

My advice is to keep in touch by phone often with your local SS office and visit there if needed. (That's what I had to do to straighten everything out.)

I'm confident the ssdi application process goes smoothly for many people. Hope it does for you.

Bob

Do you happen to know what the code should be Bob? Just preparing to go SS office in coming weeks so want to have all my ducks in a row. Any advice appreciated!

 

[dbltree]

The code is TERI, for terminal. Sucks, but that is it.

Ok...thanks (I think...:mrgreen

You can fill out paperwork online at the SS website and save it so that your "caseworker" can call it up when you go in for your appointment.

Good to know....appreciate the advise all