QS ... I have never heard of turning to people with a fatal disease for financial advice. We're all really brilliant, of course, but these kinds of decisions depend on your budget, your long-term goals and your discretionary income.
I signed up for a long term care policy when I was 60 through a group plan at work, and have kept it ever since. I figured I'd never qualify as an individual, because of my age and because I'd had a heart attack at age 58. It's paying off now, but frankly I don't know if I will ever recoup the premiums I've shelled out. It pays for someone to come in and do housework or help me dress, etc., as well as care facilities, so it's helpful ... but if you take in "opportunity costs" (i.e., what I could have earned by investing the money in bonds or CDs or other things instead of insurance premiums), I suspect it would be a money-loser.
Even if you're young, these policies are expensive. And the younger you are, the longer you will have to pay premiums. I am glad I have that policy, and to me it was worth the premiums for the peace of mind, and as I say, it is paying off, but this is really a personal decision.
Insurance is good, but if you're loading up because you think you have a fatal disease, what will you do if you don't have ALS? Cancel all the policies, then start over if you later fear another disease?
Insurance should be a part of your portfolio. My advice, which is worth exactly what you're paying for it
is to assume that you're going to live to be 100, and plan accordingly for retirement.
But wait! There's more ! I also advise getting guidance from a financial planner, rather than from some random strangers on the Internet.