ALS community stories

Steve Lunny’s journey with ALS: A story of Strength and Self-Advocacy

In early 2023 Steve Lunny, a 48-year-old Montreal-born designer and animator, was living in Miami, Florida enjoying an active lifestyle. A few months later, in August, he went from working out six to seven times a week to having difficulties running just a few paces. What started off as muscle twitches in his biceps and shoulders, subtle enough to be overlooked, were ultimately the first signs of a life-altering journey - being diagnosed with amyotrophic lateral sclerosis (ALS).

With symptoms and presentation that can sometimes resemble other conditions,ⁱ and no single diagnostic test for it,ⁱⁱ ALS is a difficult disease to diagnose.ⁱⁱⁱ Although his initial magnetic resonance imaging (MRI) scan came back clean, Steve knew his body and was not willing to ignore what he felt. He took his health into his own hands, meticulously documenting each symptom that appeared, from muscle twitches to subtle changes in strength. This self-tracking became a powerful tool, providing a clear record of his disease progression. With each entry, Steve collected valuable information and strengthened his ability to advocate for himself.

After three months of pushing for answers and refusing to ignore the symptoms, in November 2023, Steve received an official ALS diagnosis. The news was a shock to his family and friends, who had always seen him as the picture of health.

Steve’s journey with ALS has been marked by a staggering progression of symptoms. Day by day, he noticed more pronounced weakness, especially in his upper body, and stiffness that made once-simple movements increasingly difficult. In early February 2024, he could still walk independently; by June, he relied on a wheelchair. As the disease continues to progress, it has impacted his voice, making communication an additional challenge in his day-to-day life.

Learn more about Steve's journey with ALS:

Accepting this new reality was difficult, but he adopted a mantra that has guided him since:

Accept the diagnosis. Fight the prognosis.

Embracing this mindset, Steve has dedicated himself to raising awareness and advocating for ALS research, especially pushing for more patient-centered clinical trials and faster access to innovative treatments.

For Steve, the initial months following the diagnosis were isolating. Although the disease can strike at any age, ALS symptoms most commonly develop between the ages of 55 and 75.ⁱ Being diagnosed at an earlier age than most, Steve found limited resources catered to his demographic. This gap inspired him to start using his own Instagram and TikTok channels to share his journey and connect with others in the ALS community.

An app and website called ROON has also provided helpful information through questions and answers (Q&As) with doctors, caregivers, and other patients, addressing some of the specific questions he has about managing ALS. Through connecting patient advocacy groups such as the ALS Society of Quebec, WhatsApp communities, and other online networks, Steve has tapped into a support system that has helped combat the sense of isolation ALS can bring.

While ALS is challenging to diagnose, getting an early diagnosis and timely referral to the Canadian ALS Research Network (CALS) is essential to accessing the care and support needed to maintain independence and preserve quality of life for as long as possible. Steve’s journey underscores the importance of listening to your body, advocating for yourself, reaching out to community for support in navigating life with ALS.