Thank you. Good morning.
Madam Chair, members, I'm Sari Jormanainen. I'm 45 years old and living in Ottawa with my husband Paul and our two daughters, who are nine and twelve. I was diagnosed with ALS in April 2010. The diagnosis took quite some time to come out, and after a long process of uncertainty we received the news. It broke our hearts.
My daughters have been extremely passionate about the cause of ALS and they wish me to push forward the idea of research. They have organized bake sales and done the things that young girls can do, but we all know that's not going to be enough. There needs to be a long-term commitment to research to find a cure, and that's what they are looking for. That's the hope we have.
For me, that may be too late, but there will be others coming after me who will need that. The WHO actually is looking at Canada and estimating that by 2040, neuro-degenerative diseases—not only ALS but the wider group of diseases—would overtake cancer as the leading cause of death.
I think my children are very wise. They are looking at the future and looking at investments in something that will pay back later.
ALS is merciless. The progression in my case is clear. Within a year, I have progressed from a slight limp in my right foot into using a cane walker and now mainly a chair. ALS has also started taking effect in my arms, hands, and throat. There is fatigue and tiredness because of the disease.
It has forced me to say goodbyes to a lot of things in my life. At first I thought that would be temporary, that things could be fixed. That is not the case. I used to work as an analyst and senior strategic planner. I've said goodbye to work. I have said goodbye to my sports life and most of my hobbies.
I do need help at home already with everyday activities. Life in our house has changed drastically. We have mobility aids. We have bathroom aids. We have people coming to the house to help out. We have made changes to the house. Some of these aids come from the ALS Society's loan cupboard, which is of great help. Some have been paid by us and are partially covered by our insurance. Some big ticket items we pay out of pocket because there is nothing we can use to pay for them. Such things include porch lifts. That is essential for me to get out of the house and down to the street level. Work was involved with that. We bought a second-hand portable shower because eventually I will move downstairs to the main floor, and I need to be able to take showers on that floor.
This is only the beginning; we know that. There will be the hospital bed. There will be breathing devices and so forth. We will need a toilet on the main floor. We haven't even started thinking about the transportation needs for me in the future. Of course, this is all on top of the fact that I used to be an earning member of society. Now there is no salary income for me, and I'm afraid the disability pension will not make up for that.
The big question for us is that we are still at the beginning of this road, this journey, and we are trying to proactively look for ways of making sure that I can stay home, that I can be taken care of, and at the same time that our family can look forward to the future. That means we are trying to protect some sort of normalcy for our children and not deprive them, allowing them to excel at what they do at school and in their hobbies. They need to have future prospects.
What does this mean? It means practically that my husband, my caregiver, my love, takes a lot of the new responsibilities on his shoulders. Our daughters chip in, but they're young and cannot be expected to take care of me. Eventually, when ALS progresses to its advanced stages, I will be totally dependent on somebody else's help. That means that my primary caregiver needs to be around all the time. The big question is, how can we organize that?
My family clearly indicates they want me to stay at home. I want to stay at home. Most probably my husband will need to take time off from work. Still, we need to live on income from somewhere to do that. Community care can help, but is limited. We can't burden our friends and family with providing basic care, so we come to the big question of the EI benefits and how they are going to help us out.
As Nigel was saying earlier, the period of dependency can be relatively long, and in the case of ALS it often is. Therefore, the six weeks of EI benefits are not going to be enough for us. We are already dipping into our savings, and we're only at the beginning of the road.
I would also like to recognize the family care platform that the Liberal Party has put forward. At the same time, I would like to challenge all parties to come forward with improved platforms for compassionate care, particularly in view of these diseases becoming more common in our society. I think it makes economic sense to try to help people stay at home.
At this point I would like to thank you for listening to quite a personal story, and I would like to invite you to ask any questions later, if you wish to.