So mad. So sad. So wrong. I have had enough.

I read all the condolences that i received for the forum from time to time. I keep looking at the names i check the in memory pages and see so many of the same names. We are losing so many, my heart just breaks. I wish there was more I could do. More the Doctors would do. This is such a unfair journey that we all have seemed to take, and i feel we are forgotten. ALS just isn't something people know about. Sure the drug companies can make a pill that will help "get it up" and they can make yet another cream for a pimple or so on. But if "WE" and I say that as a former CAL... go to the ER, no matter what we went for, it was ALWAYS due to ALS. Makes me so mad. They treated us like lepers. Seems we could do something... I just hate it, that so many of our loved ones are passing. You hear all about AIDS, and CANCER but what about us? I am going to do something about it, I have to. I decided to go to nursing school, cuz I felt I made a difference for Bran, I have a voice, I will make people listen... who's with me? They can't ignore us all. If you have any ideas.. please share.

I think it's great you want to go back to nursing school, Pandora for such a specific purpose. In time, when I feel ready, I plan to contact the ALS Clinic to see if there's anything I can do at the Clinic to express how they can get through to the various departments in the hospitals to help people with ALS I know they're doing so much more now as far as hosting conferences for various health care centres around Alberta to educate caregivers at all levels about what ALS is and how it affects PALS. I wear an ALS bracelet and many people ask about it and I feel I am raising awareness in a small way. We have a group of about 30 friends all wearing these bracelets - professors, high level City people, University students, etc. When I see these people they let me know that they've shared our ALS story many times and are spreading awareness.

It is unfair and it is sad that drug companies are so greedy and as far as ALS goes, we all know why. I hear your frustration. Yasmin

If I survive this, I plan on moving away when my daughter graduates and going where i am needed. i feel like i have a large network of friends with ALS and they will all need help. so i want to just move around and help those who need my help. not sure how to do it financially, but ive got 7 years to figure that out.

I know how you feel. I work with the ALS Association and the VA here. As soon as my youngest goes to college, I am planning to go back and get a degree in something (social work, hospital administration, etc.) that will be useful in helping CALS and PALS. The ALS Worldwide is looking into the cluster here in Memphis. Not much, but after two years of trying to get the CDC to check into it, at least it is something. I just can't sit still and pretend like nothing is happening.