Diane Tkalec’s Story

I continue to be motivated, inspired, and fully committed to finding the “hope”

Sometimes in life we see and experience things that make us stop and demand that we take action. Below you will find a story about how transforming the tragedy of a profound and personal loss into motivation, can result in making a meaningful difference for others.

In 2007, eleven months following his diagnosis of a bulbar form of ALS, my 49-year-old husband, physician specialist, triathlete and father to our only daughter, lost his courageous battle. Beneath the veil of ALS, was a remarkably gifted individual who was very engaged in living life to it’s fullest and who taught me much about the perseverant mindset and adaptive approach required to live and cope with a ferocious and unpredictable degenerative illness. The words in the slogan, “ALS. Three letters that change people’s lives. FOREVER.” unfortunately conveyed a brutally honest truth. To this day, I am perpetually conscious about many aspects of my health and intact ability: to speak; swallow; write; walk; and breathe. My personal experiences with ALS as a wife, mother, caregiver, and business partner, became the catalyst that developed and propelled my conviction to try to make a positive and lasting difference in the future of this lethal illness. My perceptions and feelings of helplessness have been converted into hopefulness. I believe that with each and every small effort and progressive change, one by one, after some time, will end up making a huge impact and difference. This has been my inspiration, and I hope that some aspect of my story will possibly inspire others to make their own positive contributions as well.

I have been a volunteer for the ALS Society of Quebec since 2009 and I am currently involved in several aspects of their mission. My first experience with the ALS Society was as a participant at the Montreal Walk for ALS in 2007, within weeks of my husband’s passing. Although actively grieving at the time, I remember thinking that there had to be a way of changing the profound impact and devastation caused by this fatal disease. I knew that I could not change what my daughter and I had endured and experienced with respect to ALS, however, I did have the ability to improve the quality of life for other families afflicted with this disease in the present and the future.

After a bit of time and contemplation, I approached the ALS Society of Quebec with the idea of spearheading and collaborating on an athletic fundraiser in memory of my late husband. An event that would focus on his athletic passions and not on the illness that ultimately destroyed him. It would be the start of an annual sporting event, named, “Spinning for ALS”, destined to help in the fight for a cure by raising awareness and funds for this little-known incurable disease.

It seemed to be a good way to turn adversity into opportunity. The idea was welcomed, embraced and supported by the provinicial Society. The thought became a reality, gained momentum and growth, and five years later, I can proudly say, has not only heightened public awareness about ALS, but has managed to raise just over $85 000 in support of the cause.

Being a Nurse by profession, and having been a former caregiver equipped me with attributes that were very much in demand. In the blink of an eye I found myself involved as a volunteer participating in various aspects of the ALS Society of Quebec’s mission; either as a member of the Client Services and Programs Committee, participating in meetings or committee discussions about grief, caregiver support and respite care, involvement in the Society’s strategic planning sessions in 2011, or volunteering at the Walk For ALS in Montreal. As if that were not sufficient, this upcoming September, I will be participating in my third 300 km Ride for ALS challenge, and will bring along all the positive energy and determination that I can muster.

These volunteering experiences have also provided me with the opportunity to show my daughter that it is possible to face life’s challenges with integrity, compassion and altruism, ultimately making a meaningful difference in the community. As well, it has been exciting and impressive to see the growth of the team and the scope of services offered by the ALS Society of Quebec since I started my collaboration with them in 2009. I have been rewarded, throughout my volunteer experiences, with the pleasure of meeting other individuals and their families affected by this disease and the many great and talented people who have made positive advances and impacts for this disease, whether or not it is a part of their job. We are all in the same boat-therefore, if that means that I have to row a little harder at times, so be it, I just want us all to get there.

I continue to be motivated, inspired, and fully committed to finding the “hope” that lurks within this deadly disease, whether it be on a stationary bike or a road bike, at a walk event, or around a meeting table. I am grateful to have witnessed great progress and positive strides in the care and quality of life of those affected by ALS, and to see the promise of science being able to unlock and unravel some of the mysterious puzzle pieces related the cause(s) of this incurable disease.

So as long as I am able, I will sustain my commitment in the hope that together, these contributions can continue to turn adversity into opportunity.

Respectfully submitted by:
Diane Tkalec

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