Did anyone watch ER last night with the ALS patient?
I watched it and it was really emotional for me. My mother has ALS as does her older brother. By Uncle is already on a vent but we hardly ever see him. Like MAYBE once a year. After seeing the episode last night my parents were talking and have decided to get paperwork drawn up saying that my mom doesn't want to be on a vent when it comes to that point. They have already had problems with the doctor in the ER trying to "push" procedure on them so after seeing that last night on the show it is really prompting them to put stuff in writing. We will of course all sit down as a family and talk everything out in the near future, but it is still hard to think about it.
Shows like this really accurate display ALS patients and are like a looking glass for us to see what the future will hold for my mom (since we really don't see my uncle). She was diagnosed 4 years ago and it has not rapidly progressed, and my uncle was diagnosed in 1992 but he is in the end stages. She still talks, drives, walks functions basically like you and I with some modifications to make it easier for her. For example during long distances she uses either forearm crutches or her motorized chair.
I am kind of rambling here, but I wanted to share with my friends how I was feeling today.
On a totally differnt note ... ScrapMommies is up and running again! YAHOO! Now to figure out which LO's I need to post to get my Kit from last month.
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I used to work in a nursing home, and there was a woman that was there, she was on a vent. When she found out that she had ALS, she decided she was going to do everything that she could, before she couldn't do anything any more. She met Barbara Streisand, and went to a bunch of broadway shows.
I hope that your mom has a lot of good time left, and that she is able to enjoy it with you, and your family.
There are many places out there for support (or so I have heard). Another option, would be to find someone else (since you guys don't see your uncle too much) that has ALS in a more advanced stage, and see if they would be willing to sit and talk with you and give any advice that they can.
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