“We depend on all of our caretakers. Having everything in one spot really makes a difference for the people caring for people living with this disease. If they cut the funding, I guarantee you people like me won’t get to see the doctors and specialists we need to see on a regular basis. People will fall out from treatments they need to live. It is definitely important for it to get out there about the funding. There’s a lot of patients that go to clinic and depend on it. I can’t imagine it not being there. Where would they go?”
At the Chapter’s Resource Support Group we attend, I met a couple that are waiting to get in for their official diagnosis. They’ve been waiting six months, and their appointment still isn’t until August!
There’re not enough appointments. The man is young, it runs in his family, his brother died from it, and he’s starting to have the same symptoms. He’s probably in his 50’s maybe.
I thought, “Wow, I got in the next day!” But that was a few years ago. And he’s just trying to get in for a diagnosis!
And you can’t even apply for Medicare or work on your insurance without an official diagnosis. And then once you apply, that takes a long time to kick in.
A lot can change in a couple of months when you have ALS so it’s really important that you get seen as soon as possible. And you can’t get some of the equipment and stuff you need until the doctor sees you and writes a prescription for you so it’s so important to see your doctors so you don’t have to wait months for stuff you need to live or get around.
Especially with your respiratory or speech, so much can change in a short time. I go every three months now, it used to be every 2 months but because of the funding, it’s three to four months. I think two months is best and three months is the most, four is too long.
I can’t imagine having to wait every four months or even more to get the help I need. And for some people it may be too late. Having everything in one spot really makes a difference for the people caring for people with ALS.
If they cut the funding, a lot of people won’t go see the dietitians or speech therapists they need because it isn’t convenient for them anymore, or insurance won’t cover it, or they can’t get around.
It will be harder to get the care they need and the equipment, and everything else we get by seeing all the different specialists we get to see at clinic.
It’s crazy that they’re going to have to cut out all these patients. There’s a lot of patients that go to clinic, and people travel from all over to be seen and receive the care they need to live. I can’t imagine it not being there. Where would they go?
Julie Niehoff 