Mr. Chair, I would like to thank those who spurred this debate, the member for Etobicoke North as well as the minister, who have helped to put this on the table this evening. It means a great deal to me.
As the member for Lethbridge said, for some of us this is extremely personal. It is not about constituents. It is not about friends. It is about family. In my case it is about my father who died of MS. Although the MS Society will say people do not die of MS, my father is no longer with us today because MS killed him. They can say it was cardiac failure from complications from pneumonia and everything else he went through in his life, but my father is dead because of MS. He would have seen me stand in the House on my first day if he had not died of MS the year before.
It means a great deal to me to do this. It means a great deal to me when I hear the member for Barrie talk passionately about what we can do. But then he asks whether we have written to our provincial health minister. I would suggest to the member that perhaps we should write a letter and have all 308 of us sign it, send it to every health minister across this land, and state that we ought to look at what we can do for those who suffer from this disease.
We cannot know what it is like unless we live with it. My colleague and friend from Lethbridge knows that.
We cannot know what is like to have a father fall because he wants the dignity to go to the bathroom on his own. My father fell behind the door and squealed in agony because I had to open the door and squeeze him between the door and the wall to get in to help him get to his walker. People cannot know that unless they do it, unless they live with it. People cannot know the toll it takes on one's mother as she is providing his care every day of his life.
The member for Lethbridge and I understand that because we have lived with it. We know what it is like for families to watch that person go through agony, to watch their dignity be stolen from them. I watched the person I knew and looked up to as a father look to me as his father, 20 years before it should have happened, because he no longer had the ability to carry on.
As a school boy, my father went to work at the age of 14 in a shipyard in Belfast. He worked his entire life, and at the age of 57 he was diagnosed with MS. It was later in life than most MS sufferers, but unfortunately he got the worst case, which is called progressive MS. In fact it was rampant. He never had a break. He also suffered the aggravated pain in his legs, to the point where he was on morphine every day until the end of his life.
He said to me years after he was diagnosed that someone dealt the cards and he had to play the hand. He came to terms with his suffering. I do not know how. I watched him day in and day out in agony, when he could not eat. When he did eat he was ill because he could not keep the food in his stomach anymore. His sphincter valve had reversed itself, and as the food went down it came back up. That is the life that MS sufferers lead. That is why they look to us and say help. They put their hand out to us and say help because their life does not get better.
Regardless of the drugs they are given, most physicians do not know what to do. In a lot of cases they do not know someone has MS. They say the person is asymptomatic, until an MRI finally shows they have the clouding in the brain. The doctors say “oh, by the way, you have MS”. A lot of specialists throw their hands in the air and say they will do the best they can to try to manage a patient's life. Those are the cards that are dealt, as my Dad used to call them.
What does it mean when we see a treatment and its potential? I agree with my colleague from Lethbridge that this treatment would never have worked for my father. For most of the folks who have rampant progressive MS, this would not work.
My father is not with me today. I am not asking for him, but I know he would want me to ask for all those others, who like him have suffered, especially young people who see older folks and know that is where they are going.
They are going to be in wheelchairs. They are going to be in long-term care facilities. They are going to be in places where, at the end of the day, what will it mean to the quality of their lives and the dignity of their lives? It will be taken away from them.
This is not a cure-all. If it were, I think every member of this House would rush out and sign up for it. We all know that it is not a cure-all. However, what it is indeed is an opportunity for those who potentially could be spared some of the symptoms, perhaps even for a period of time.
I like to say that my mother is small in stature--my mother is four feet eleven inches--but she is the wiliest little Scotswoman one ever saw. She was a giant when it came to advocating for my father. She would go after the MS Society day in and day out and say, “Have you seen this, have you seen that, did you know about this report, did you know about this new study?”, and nine times out of ten, they said no. My mother, at the age of 62, learned how to use the Internet, and she became his advocate as well as his caregiver.
Unfortunately for MS sufferers, it is their families who advocate for them. That is why we see the push we see today when it comes to a specific treatment. It is because they advocate so passionately for them, because they know that their suffering is all too real. As I said earlier, we have to live with it and have to have someone who is dear to us, who we see day in and day out, to know what it really is like.
I know that many of my colleagues here this evening have spoken quite eloquently and passionately about constituents who call, and that is all too real. There are those of us in this House who have family members now, and hopefully will for a long period of time to come, who will hopefully get well in the future. I can only hope for that for my colleague from Lethbridge for his daughter.
There are those of us who have lost loved ones because of this disease. We can divide the line any way we want. We are not going to get into a constitutional crisis over MS, whether it be provincial or federal. We are not about to get into that kind of debate here. However, at the end of the day, whatever power we have, whether that be moral suasion only, we do a disservice, I do a disservice to my father, we do a disservice to MS sufferers and their families, if we do not take that mantle up, if we do not take that challenge and go forward. We desert them. The life is being taken from them now. Let us not desert them any more.
The medical community for a long time deserted MS sufferers, because it did not know what to do. The medical community is now coming back to MS patients saying that it knows what it did and that it has to find things to help. They have looked at all kinds and manners of treatment. You name it, my father tried it, whether it be bee sting serum or something else. My mother learned how to give injections to him when she got to be nearly 70. She figured it out. Let me tell members, people do not get the personal and home care that is needed when they are MS sufferers. It is just not there. They will be told to go to a long-term facility and will be put on a waiting list. Heaven forbid, though, that they actually want to stay at home with their life partners, as my father did.
I used to say to my mother, “Mom, you're a heck of a stubborn lady”, and she said, “Yes, I married him in sickness and in health, and I intend to keep him,” and she did. I can tell members that she kept him until the day he died. He died in his own bed, in his bedroom, because that is where he wanted to die. He chose his moment to go. He knew that he had no more time. He knew that he had no more energy to fight. He knew that this was the end. He decided to go back to his house and his family. It did not make it easier for us to be there with him when he went, but it made it his decision. Ultimately, the only dignity he ended up with at the end of his life was choosing the day he died, when he said “No more. No more treatment. No more interventions. I don't want to be intubated. I don't want any of it. Take me home.”
I took him home from the hospital, and he died in three weeks. That was his choosing. That was the last actual act of dignity he got to perform in the last 20 years of his life. MS robbed my parents of the retirement life they had planned for 40 years. It took it away from them. It takes it away from young people, as well.
A lot of folks say that my dad was lucky. He got to live until he was old. He got it later in life. The unfortunate part is that there are a lot of young folks in this country and across this world who do not have the luxury to live that long. So, I implore--