I just googled this and it sure doesn't seem pleasant. I don't have a degenerative illness, at least that I know of. If I did I might think a bit about living in a State where medical marijuana is legal. I've never tried marijuana but many people with various illnesses seem to swear by it.
Back when I was in college I worked with an old fella who had terrible glaucoma. He mentioned to me that the pain was sometimes unbearable and the eye drops that the VA hospital gave him were nearly worthless. The only thing that helped him was smoking marijuana, from what he said. I don't believe it is legal in this State, but who could blame him for using it when it made his life bearable and offered him a great deal of comfort. It's a shame that it's so criminalized (even when there is no harm to others) and my guess is that if legalized it would cut too far into big pharma's profits.
Anyhow, I hope it's a long time before your illness gives you serious trouble.
My best advice is: Whether you live a "short" or "long" life, you still only exist for a very short time here on Earth; even those who live to be 100 years old only exist here for a very short time. So what is "healthy" or what is a "good" lifespan?
Enjoy each and every day, and make sure that your life and your actions lead to a positive impact in the lives of others.
Just my humble opinion.
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