If anyone understands... - Amyotrophic Lateral Sclerosis (ALS) Message Board

Sandra143 · 06-16-2002, 12:05 PM

My Uncle passed away from ALS 22 years ago at the age of 22. 8 years ago, my father was diagnosed with it. He is now on a ventilator and more or less bed ridden. Other than the nurses that come in everyday, my mother takes care of him. She has done remarkably well considering the fact that she doesn't even like the site of blood...she can change his trach. In December of 2001, 2 days after my 22 year old brothers birthday, he was diagnosed. I think maybe 3 weeks after my brother was diagnosed, my fathers mother, was diagnosed. It just seems that my whole world has come crashing down. I am extremely close to my brother. Being the only girl with 4 brothers, I was always daddy's girl. I came to grips with my father having it, but its hard watching it all over with my brother and my grandmother. My uncle's daughter has been tested (we haven't heard anything yet), and my 21 year old brother has been tested. I myself don't want to be tested because I don't want to worry. I have 2 daughters and I am scared to death. My husband is very supportive but I think that its hard for him to understand everything because he has only known my family for 3 years. If any one else has gone through it or is going through it, I would love to talk to you. Its easier when someone else knows what ur feeling. Please reply to me!!!

[This message has been edited by moderator2 (edited 06-16-2002).]

sindiveri · 06-20-2002, 02:44 PM

I hate to ask you this question. But what were some of their symptoms that made them go get tested initially. I have had no extension in my right leg and it has completly atrophied. I went and got an emg test and there was no message getting from my brain to my leg. My health is fine cept i can't use my quadricep. There are no tears and MRI's of my mid lower and thigh have come up negative. I'm going for one on my brain tomorrow. Does any of this sound familiar to you?? I'm sooo sorry for what your going thru. I feel so bad.

Sean

Kinik · 06-20-2002, 09:07 PM

For me, it's hard to imagine what you're going through having so many cases of ALS turn up in your family alone. I do however know how hard it is, with my uncle having it and all. There's not too much I can say.. i`m not good when it comes to things like this.. always considered ALS one of those 'hard things' to talk about for me.. I wish you and your family the best though, Take care of yourself.

-Nicole

Sandra143 · 06-21-2002, 08:06 AM

Sean-
It happen the same way that urs did. It basically started with an injury (thats what set it off). For my father it was his knee. He started limping and noticed that he couldn't lift his right foot up. It progressed from there. My brother fell and sprained his ankle the morning of my wedding. After that, he wasn't able to lift his right foot up (he couldn't point his toes to the ceiling). I knew instantly that he had it because he was walking just like my father. They had the emg done also. It all sounds familiar to me. If you need to talk...im here.
Cassandra

Sandra143 · 06-21-2002, 08:09 AM

Nicole-
I know that its hard to talk about. Its hard to deal with. Just understand that if you ever need someone to talk to or to just vent, Im here and I understand.

Cassandra