Breakthrough ALS Blog
Follow our journey as we blog about the leading-edge research the ALS Therapy Alliance and its partners is conducting. Meet our campaign spokespeople and learn more about how their families are living with the disease and remaining hopeful that a cure will be found. We welcome your comments and feedback!
Appreciating Life’s Joys: The Bernard Giere Story
Sarajane Giere, an artist, writer and retired teacher, has been married to Bernard (“Bernie”), a former pilot, for 51 years. The Long Island residents have two children and seven grandchildren.
Last year, Bernie spontaneously stopped at a nearby airport to fly a bi-plane - something he’d always wanted to do. His family had suspected something was wrong with Bernie's health - his symptoms started in 2007 - and when they saw how difficult it was for him to contort himself into the small cockpit, it confirmed that his body was starting to fail him. Yet on that day, he smiled as he flew the small plane, living a longtime dream. A few months later, he saw his doctor and was diagnosed with ALS in February 2012.
Today, he feels okay, but cutting food is becoming difficult. He can’t open bottles, turn a key, lift heavy things or walk very far. His left foot trembles. He's losing weight. At age 73, some of Bernie’s symptoms appear to be signs of aging, so many people don’t know, yet, about his ALS diagnosis. Bernie wrestles with how and when to share the news of his ALS with others, and Sarajane is anxious for Bernie to share the news so the community can rally around them.
“All the good wishes and caring that come our way will work as an elixir,” Sarajane explained.
For now, Bernie and Sarajane find the ongoing support from their children and grandchildren to be gratifying. They stay positive by attending church weekly, praying for strength.
Since Bernie was diagnosed so recently, they’re still learning about their options. Sarajane has joined an ALS support group, and since Bernie is retired military, they’re leveraging helpful VA resources.
While Bernie comes to terms with his diagnosis, Sarajane is learning more about the disease and advocating for ALS research. She recently signed up to volunteer for Ride for Life, a non- profit corporation founded by an ALS patient and 19 year survivor. During Ride for Life’s annual event, ALS patients ride their electric wheelchairs to raise funds and awareness for the disease.
Since Bernie’s diagnosis, the couple’s priorities have shifted. They believe each day is a blessing, and strive to make the most of it, not dwelling on worst case scenarios. Sarajane is now working on a book of Bernie’s memoirs, including the compelling story of when he was shot down (and rescued) in North Vietnam.
Today, they’re trying to accept Bernie’s ALS diagnosis and make decisions about his future care. They’re also planning a vacation, attending their grandson’s soccer games, taking short walks on the beach and appreciating life’s joys.