Medicare
Hi Zen
I didn't see any mention of the Medicare disability. You should be aware that the condition of ALS is an automatic no wait coverage. You won't need to wait more then a month before the benefits kick in. You will receive your monthly disability income and also parts A and B.
On or around your birthday of each year, the social security administration sends out a statement that tells you how much you will receive if you should become disabled at this time. This will help you determine what you can count on from the S.S.
Any children under the age of 18 will receive an amount based on your allowance.
If you get service connected, then you will probably earn more each month then your job pays you currently.
If you have a group plan there should be benefits to replace lost income. If all of your disability incomes don't exceed a certain amount, then you can get SSI and Medicaid.
There are many options you have to help you replace your income.
Then you have the MDA which will help with a payment of around $2,000. annually.
If you start going to the nearest ALS support groups, you can learn how to get the most help from others experiences.
Please try to get a good neurologist that will work for you. This will be your best friend as he will write the scripts for all your needs.
I was 40 when first diagnosed. I am now 47 and no longer walk,talk,eat,breathe or anything else a normal person can do. I do however support my family and pay the bills because of Social Security and all the other resources available.
You are doing the right thing by getting all the info you can. Don't think that you can beat this thing, rather believe you can live with this dam disease.
ALS doesn't affect everybody the same though.