Check out the photos on the gallery page, I will update it as I receive more.
If you are interested in reading my speech as lead walker, click "Read More" below.
Click Here for the link to the story in the Ottawa Citizen.
Click Here for the link to the story in CTV news.
Today is about hope.
My name is Carol Skinner and I was diagnosed with ALS on September 19, 2013, at 41 years old.
At the time, I was working at the Canadian Mental Health Association as an art therapist facilitating groups for individuals with severe mental health and substance use issues. I was proud of the work I did, and good at it too! I had been having some falls and stairs were getting difficult to climb. When I would go for my favourite Chai Latte across the street from work, it became harder to dodge traffic! One afternoon I left work early for a medical appointment, to have an EMG. I thought that the needles in the muscles was going to be the worst part, but of course, the diagnosis of ALS was unimaginable and one that changed mine and my husband Travis’s lives forever.
As you well know, ALS is a devastating illness with no treatment, no cure, and one that leaves us as who we are on the inside, while taking away our physical abilities.
Day by day, we discover things we can no longer do.
Some markers for me were not being able to get up of the floor, keep my balance or even step up onto a single curb.
I used to be an adventurous person, I swam with sharks, pet cheetahs, and have gone spelunking. Now, I live in fear of even going outside not knowing what I can and cannot do. There are many times when I feel like I’ve lost myself and who I am altogether. That’s where you come in. The times when I feel that I am not brave, or strong, and that I cannot handle this, I am surrounded with love and support from friends and family telling me that I am an inspiration to them.
I feel privileged to have been asked to be the lead walker this year as I have been struggling with how to find a sense of purpose after my diagnosis.
This is the most meaningful speech I was invited to give because I am here to thank you for being here.
Your support means more to us living with ALS than you can ever imagine.
This is where we find hope.
Thank you to the caregivers, who tell us that we are worth it, that it is a privilege to help us, that you want us to stick around!
And for those of you here today walking for those who have passed, I am so impressed that you honour their memory by continuing to fight against this oppressive disease.
Thank you to the volunteers, who work diligently to raise awareness for ALS. It takes months to make days like today a success.
Thank you to the ALS Clinic who treat us with compassion, kindness, a sense of humour and respect.
The past year has been incredible for those of us living with ALS in inspiring hope, because of the increase in awareness and advocacy in two significant ways.
The Ice Bucket Challenge happened during my first summer with ALS and it was encouraging to see such a worldwide show of support and solidarity. My personal favourite was Kermit the Frog’s! Before, when wearing my leg braces, people would ask me what happened and when I would get better, they did not comprehend when I told them that I wasn’t getting better, in fact, my nerves and muscles were quitting on me and that I would die from this, and soon.
Now when people ask, I mention the Ice Bucket Challenge and a lightbulb goes off, “Oh, yes, I did that!”. It raised 17 million dollars towards research and client care in Canada alone and increased the public’s understanding of ALS. It raised awareness for the whole world and my hope is that the millions of people who participated continue to be engaged with ongoing efforts that will impact the ALS community.
Thank you for being here to continue to raise funds to feed research.
Those of us living with ALS are desperate to maintain some sense of hope, and for that we need your help.
Thank you to the researchers who work towards making ALS a treatable, not terminal illness.
Thank you to all of those who advocate in support of ALS.
Due to the tenacity of the ALS Society of Canada and Brian Parsons the Government of Canada extended the Compassionate Care Benefit from 6 to 26 weeks, a benefit that will directly provide financial assistance to Canadian families caring for a loved one with a terminal disease.
Thank you to friends and family who have not given up on us, and who remind us who we are beyond ALS.
For my community of friends living with ALS,
I will leave you with a favourite quote of mine from the movie The Shawshank Redemption:
“Guess it comes down to a simple choice really.
Get busy living, or get busy dying”.
I choose embracing life.