Thank you to Noella LeBlanc, who wrote my story and submitted it to the media for this year's Ottawa Walk for ALS...
About Carol Skinner
Lead walker and ALS advocate – Ottawa WALK for ALS
Carol Skinner, is 43 years old and lives in Kanata with her husband Travis. They have been married for five years.
Carol used to love to hike … and dance … and be active. Travis will tell you she loves reggae.
On September 19th, 2013, at the age of 41, Carol received devastating news. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS).
ALS, also known as Lou Gehrig's Disease, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. Every day two or three Canadians die of the disease. The average life expectancy after diagnosis is three to five years.
Carol has a Masters in Art Therapy and, until her diagnosis, worked for the Canadian Mental Health Association counseling clients and training people in the community to help individuals with substance abuse and mental health issues.
Prior to becoming a therapist, Carol worked for the YMCA for ten years. She started as a camp counselor and grew to become a camp director. Carol is a recipient of the YMCA’s Outstanding Service to Youth Lifetime Achievement Award.
The first thing one realizes after meeting Carol is that she is a truly loved woman. With her husband by her side and her family from New Zealand having taken up residence in their home to care for her, she and Travis feel blessed. They are surrounded by friends who help them in any way they can.
Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease.
Still a vibrant, outgoing woman, Carol says that she has watched herself go from an adventurous person to living in fear. Now she can only walk a few steps at a time, with braces on her legs, and cannot carry anything or get up if she falls.
Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall.
After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news.
Carol has had to make many adjustments in a relatively short time. She has had to leave her career behind. She and Travis have had to sell their first home together because it had stairs. They have lived in their Kanata apartment for less than a year and are moving again at the end of May where the new apartment layout will accommodate her wheelchair.
Since her diagnosis, Carol has become a strong advocate of the move to increase compassionate care benefits, part of an existing EI plan, from 6 weeks to 26 weeks. She says the new plan will mean a great deal to her and Travis.
However, ALS advocates will tell you that six months is not enough. Time is precious and it is difficult to predict how quickly, or how slowly the disease will progress. This can place an incredible strain on families and caregivers.
“We’re taking it day by day and are appreciating what we can.” She says. “You have to live for the now and appreciate what you have – make it count.”
Lead walker and ALS advocate – Ottawa WALK for ALS
Carol Skinner, is 43 years old and lives in Kanata with her husband Travis. They have been married for five years.
Carol used to love to hike … and dance … and be active. Travis will tell you she loves reggae.
On September 19th, 2013, at the age of 41, Carol received devastating news. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS).
ALS, also known as Lou Gehrig's Disease, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. Every day two or three Canadians die of the disease. The average life expectancy after diagnosis is three to five years.
Carol has a Masters in Art Therapy and, until her diagnosis, worked for the Canadian Mental Health Association counseling clients and training people in the community to help individuals with substance abuse and mental health issues.
Prior to becoming a therapist, Carol worked for the YMCA for ten years. She started as a camp counselor and grew to become a camp director. Carol is a recipient of the YMCA’s Outstanding Service to Youth Lifetime Achievement Award.
The first thing one realizes after meeting Carol is that she is a truly loved woman. With her husband by her side and her family from New Zealand having taken up residence in their home to care for her, she and Travis feel blessed. They are surrounded by friends who help them in any way they can.
Her blog (www.livelovelaughwithcarol.com) provides her with a venue to keep friends and family up to date with her life and the ongoing progression of the disease.
Still a vibrant, outgoing woman, Carol says that she has watched herself go from an adventurous person to living in fear. Now she can only walk a few steps at a time, with braces on her legs, and cannot carry anything or get up if she falls.
Her first symptoms began to appear in February of 2013, when she had difficulty skating on the Rideau Canal. At first, Carol, who had always been the one to “push Travis around on the Canal,” thought she needed to get fit again after a long winter so she began to exercise. She tried walking and running to get fit but began to trip and fall.
After a series of events where Carol continued to lose her balance, she sought the advice of a doctor, who referred her to a neurologist. It was then that she and Travis were given the devastating news.
Carol has had to make many adjustments in a relatively short time. She has had to leave her career behind. She and Travis have had to sell their first home together because it had stairs. They have lived in their Kanata apartment for less than a year and are moving again at the end of May where the new apartment layout will accommodate her wheelchair.
Since her diagnosis, Carol has become a strong advocate of the move to increase compassionate care benefits, part of an existing EI plan, from 6 weeks to 26 weeks. She says the new plan will mean a great deal to her and Travis.
However, ALS advocates will tell you that six months is not enough. Time is precious and it is difficult to predict how quickly, or how slowly the disease will progress. This can place an incredible strain on families and caregivers.
“We’re taking it day by day and are appreciating what we can.” She says. “You have to live for the now and appreciate what you have – make it count.”
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