Later that afternoon, I had an opportunity to promote ALS Awareness on CTV News at Noon, check it out:
My name is Carol Skinner and I was diagnosed with ALS on September 19, 2013, at 41 years old.
As this ceremony represents ALS Awareness, I am here to tell my story, to share the effect ALS has on my life.
The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.
I woke up that day without a clue as to how my life would change. I went through the dreaded needle in the muscle test and the neurologist kept saying "I'm afraid to say this is quite serious". My husband Travis & I were trying to focus on what the doc was telling us…no tumours...no blockages...sound back...sound brain...nerves going to muscles...motor nerves not affecting sensation...degenerative condition...motor neuron disease...lou gehrigs disease…no known reason….ALS...progressive..no treatment…no cure...nothing triggered it....shortened life...2-3 years…
I must admit, before that day, my awareness of ALS was limited, so of course we did what the doctor told us not to do after that appointment, we went home and googled ALS, in that moment, our spirits were crushed.
Of course this is a devastating tragedy for Travis & myself, we lost our home as we had a two floor walk up and I cannot do stairs so we moved into an accessible rental. I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own. I have lost my career that I was very proud of. I was an art therapist facilitating groups for individuals with mental health and substance use disorders at the Canadian Mental Health Association. I am losing control (which is particularly difficult for someone who is known to have control issues!), and we have lost our future dreams. ALS is an illness that is at the forefront of your thoughts 100% of the time.
The Ice Bucket Challenge happened during my first summer living with ALS and it was wonderful to see such a show of support and solidarity. 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!”. Though the Ice Bucket Challenge made a difference financially and in the public’s understanding of ALS, we have a ways to go. I am here to plead with you to spread awareness which leads to motivation to act, to fundraise, to join and or sponsor the ALS walk, and other events. We need to continue to raise funds to feed research. There is a sense of urgency with this illness that is neither treatable nor curable. Those of us living with ALS are desperate to maintain some sense of hope, and for that we need your help.
In the almost two years of living with ALS my husband and I have come to realize that we are blessed. Our friends and family have surrounded us with love, we have made it a priority to travel while I still am able and we have been trying to seize the opportunity to make moments matter by appreciating what is really important in life. I have had a chance to reflect on my life and be proud of my accomplishments of giving back and making a difference in this precious world.