On behalf of ALS clients we are grateful for the support from the Government of Canada and will continue to work with the government on innovative partnerships related to easing the burden of ALS.
I was diagnosed with ALS on September 19th, 2013 at 41 years old. I was given a timeline of two to five years left in my life. This September I plan to have an “I’m still alive” party and you are all invited!
My husband Travis couldn’t be here today as he is at work to pay our ever increasing household bills. I am no longer able to work and we’ve had to sell our home to move into an accessible rental.
ALS, being a degenerative disease is terrifying for me and my family to live with. My progression is increasing at a rapid pace as I can no longer walk for more than a few steps, carry anything, or get up by myself after a fall.
When the Compassionate Care Benefit was at 6 weeks we would have had no idea when to use it as no one knows when my last 6 weeks will be. Do we use it now while I need help with daily activities? Or when things are at their worst? How will we know when that is? What if I live past those 6 weeks, how do we keep paying our bills? Most likely we would not have had the chance to use it at all.
This extension to 26 weeks provides my husband with the opportunity to care for me not only physically but also much needed mental and emotional support while relieving some pressure off our monthly bills. I cannot get through this alone. I am trying my best to fight, and I really need my husband by my side in this short life I have left. That is what compassionate care means to me.
I would like to thank everyone who has worked for the Compassionate Care Benefit Increase and made it happen. Especially ALS Canada and Brian Parsons for their awesome advocacy. On behalf of those of us who are suffering, thank you for making this necessity become a reality.