Diagnosed with ALS in September 2013 at the age of 41, Carol has surpassed the two to three year life expectancy that was originally given to her by her neurologist. Since then, she has struggled with degenerating muscle function every day – but she refuses to let that stop her.

When she first received her diagnosis, Carol says her only regret was not travelling to Italy. She has since travelled to Italy twice and has learned to make the most of the time she has been given with the people who matter most to her. She continues to make travel plans for the future, despite not knowing if she will be well enough to go. In the past few years, Carol and her husband have travelled to Italy, Denmark, Sweden, Russia, Thailand, Antigua and England, to name a few. She says that crossing these countries off her bucket list has shown her that ALS is not an excuse to give up on her dreams.

Carol and Travis in Portofino, Italy

One of the biggest struggles for Carol while living with ALS has been accessibility. She says that 50 per cent of her waking hours are spent resting and the other 50 per cent are spent working on accessibility issues: for example, expensive wheelchair batteries that drain quickly and leave her in fear of venturing outside on her own, feeling like an observer of society rather than a participant, and loss of control and independence.

Carol’s diagnosis meant that she had to give up her career, her first home, her ability to drive and her dreams of a future with her loving husband, Travis. However, she is grateful for the time she has been given and the generosity of family and friends.

Carol and husband Travis have created a blog to update loved ones on the status of Carol’s progression and to include everyone in the ALS community in her journey. Writing this blog has given Carol a sense of purpose. It has connected her with others in similar circumstances and relieved her of feeling alone in her experiences. On her blog, Carol writes:

If tragedy were to strike tomorrow, what is the one thing you would regret?
Make it right.
Starting today.

You can visit Carol’s blog at www.livelovelaughwithcarol.com

ALS Canada

Carol’s relationship with ALS Canada started with the Ottawa Walk for ALS in 2014 as part of the “Living Loving Laughing Walkers” team, which has collectively raised over $17,000 for ALS research and client services. Since then, she has become an ALS Canada Ambassador and has been an advocate at the University of Ottawa, at the ALS Research Forum and at the first all-party ALS Caucus on Parliament Hill. Thanks to our generous donors, Carol has been able to access ALS Canada’s equipment program for practical needs like a new shower chair so she can continue to shower independently despite her weakening leg muscles.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

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