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, really, between your GP and your neurologist.
I find that I have to depend on my own intuition most of the time as to what to do. I'm not saying it's a lack of caring. It's a lack of what's available. It's a fear of stepping out of the box in terms of treatment. Even though I spent $10,000 last year on alternative treatment and was told, “Well, you know, there's no proof, no proof, no proof”, I have nothing to lose. I don't know if it helped. It helped me mentally and it helped me emotionally, because the worst thing is to feel that you can do nothing for yourself.
I went on a clinical trial. It took me eight months to get results from it. By that time, I lost more and more function. The reality of how you can get into a clinical trial, get the information, and the speed at which your body is continuing to decay don't match up.
Every trial has its own specifications in terms of when you can get in. I'm also part of a statistic for study. Sometimes I feel, am I a statistic? Am I a patient?
I have ALS; I am not ALS. It's very important for me to tell you that, because I have devoted most of my energy to keeping my mind as balanced as I can, to keeping my spirits strong, to contributing and to being here. That is all I can do for myself. Otherwise I open my hands to everybody else and at a certain point you feel spun around and around, and you have to stop because the insanity is too much.
I think—we've mentioned this—there is also a need for spiritual care. The medical model as it exists now has a strong emphasis on the clinical and diagnostic, but somewhere we need to mobilize people's ability to heal themselves. I'm not saying a cure; I'm saying to bring themselves to the best place possible within themselves to deal with this. You have to live alongside this illness. How do you do it if you have no access to that kind of support, help, or guidance?
If I could put anything forward, it would be—not just for ALS—the need for compassionate spiritual care. I'm not even talking about God, but whatever it is to that person will so help mobilize strength and the ability to live with this and to contribute.
As you can see, I'm quite devastated by this, but I refuse to give up and stop being myself. Nobody is going to take that from me until I no longer have it.