I think initially a more comprehensive team at the hospital Sid first went to, to be diagnosed. It was a bit disjointed, the efforts to diagnose him. And we ultimately went to the States because we couldn't get it done here properly. So that would be one thing.
Once we came back with the diagnosis—which, by the way, was made instantaneously once we went down to the States, whereas here it was a nine-month ordeal of going down different paths, with different possible diagnoses... Once we came back, unfortunately, the ALS clinic was not as well equipped as it needed to be to offer service. The personnel there, as well-intentioned as they are, are stretched to the max. There's a need for clinical coordinators. There's a need for more support groups. There's a need for a more comprehensive team. So I think that would be the second thing.
There's a need for better information packages, so that when a person is diagnosed you get material that takes you step by step in a better way than is currently being provided.
Four, a cure. Treatments. Hope. We often felt that there was no real need to go to hospital. It was a very unsatisfying experience. Again, as I say, as well-intentioned as everyone was there, there really wasn't much to offer. We ultimately went to the States for clinical trials because there were none here. Now, fortunately, that's changed. But unfortunately, by the time the clinical trials came to Toronto, my husband's disease was so advanced that he couldn't participate. But he was very instrumental in bringing clinical trials to Toronto.
And I think more awareness. We felt very alone in this disease. It's often called the orphan disease. Here we are, it's June, ALS Awareness Month, and very few people know that it is. I think we would have felt better supported if there was a more concerted effort on the awareness front.