Subcommittee on Neurological Disease committee  I just want to throw something in. I think within Canada there are many people who don't live within the treatment centre areas. If there's any way we can come up with mobile units with interdisciplinary teams that can travel, I think that would be a brilliant step in the right

Subcommittee on Neurological Disease committee  The only approved drug is called Riluzole, or Rilutek. The efficacy for it is an extension of three months of life. Whether or not that is reality, I don't know. I'm taking it, but that is all that is currently offered to me.

Subcommittee on Neurological Disease committee  I get bits and pieces from the hospital, from the integrated clinic; otherwise I would say I make myself knowledgeable.

Subcommittee on Neurological Disease committee  I would think there is not a collective reality around services. I don't want to say there are no services--there are--but I don't feel they are coordinated and presented in a thorough and needed way. I don't know if that was your experience.

Subcommittee on Neurological Disease committee  You have to be smart and you have to ask questions. That's true in life anywhere. You have to be your own advocate, even with ALS, and there is only so much energy and so much room you have, but the reality is, I would say, you have to go after your own treatment and your own sen

Subcommittee on Neurological Disease committee  Ceftriaxone.

Subcommittee on Neurological Disease committee  To follow up on this point, I was on the lithium trial. This was based on a study in Italy. Unfortunately, I think it had a lot of holes in it. I think everybody is desperate to grab on to something hopeful. I began the study around February 2008. They stopped it in September a

Subcommittee on Neurological Disease committee  There are a couple of things I want to say. There is an incredible lack of integration between your regular GP and your neurologist. I feel as though I live in, sometimes, two separate places. There's very little awareness among GPs of ALS. There are no coordinated treatments,

Subcommittee on Neurological Disease committee  Ladies and gentlemen, thank you very much for inviting me to come to this meeting to be a witness. My name is Melanie York. I am 56 years old and I am living and dying with ALS. Prior to my diagnosis in September 2008, I was fully active and passionately engaged in life. I was