A swim to help neighbors living with ALS
David Garber of North Falmouth has been living his life with ALS for eight years, and he continues to live it to the fullest. He teaches us life is what you make of it, in spite of a physically debilitating disease.
I first interviewed Garber in the winter of 2016. It was a late Sunday afternoon and the wind was whipping across Buzzards Bay, tossing the water up on the beach in mountains of white and gray spray. A house on the shore has withstood many winter storms; much likes its owner who has stayed strong despite his chronic disease.
When I entered the living room – now a bedroom – of the North Falmouth home, I heard a quiet swishing sound coming from the ventilator that helped David Garber breathe. New Orleans jazz music playing quietly in the background. The sun streamed in through large picture windows, outlining the medical equipment and furniture that stood in wait to be put into service.
“Welcome to my seaside infirmary and spa,” typed Garber, with a glint of humor in his expression as the words march across a computer screen.
He sat in his specialized wheel chair that supports his body, his neck and head. Eye-tracking assistive technology helps him communicate. By selecting letters in cells on his computer screen with his eye movements, the program spells out the words.
One of 21
Garber is one of the approximately 37 Cape Cod residents living with Amytrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease), according to Ron Hoffman, founder and president of Compassionate Care ALS.
ALS is a neurodegenerative disease that affects the nerve cells in the brain and spine. As the disease progresses, the muscles weaken, paralysis sets in and eventually patients suffer respiratory failure.
Garber’s optimism, upbeat attitude and his ability to be proactive have carried him far on his journey with ALS.
“I’m fond of saying that it’s been amazing to be a part of life I never knew existed. I’ve been fortunate to see friends, family and community circle the wagons for me,” said Garber.
To honor Garber and raise money for ALS research, the 8th Annual David’s Old Silver Swim for ALS will take place on August 11, 2018, at Old Silver Beach in Falmouth. The swim is a fundraiser for Compassionate Care ALS (CCALS), an organization based in West Falmouth that helps people with ALS and their families with the physical and emotional complexities associated with the disease. It also provides equipment, caregiving and other resources.
The event raised $94,000 last year and organizers hope to raise $100,000 this year.
Living With Enthusiasm
When Garber was diagnosed with ALS in April, 2009, he was a dentist with a thriving Falmouth practice that he started in 1978. “I really enjoyed my work,” said Garber.
“Everyone in town went to him,” said Michael Fishbein MD, Garber’s close friend, who has been with him every step of the way.
Garber’s symptoms began with chest fasciculation (involuntary twitching), muscle weakness and changes in his speech. By the time he closed his practice in September 2009, he had generalized muscle weakness that had progressed from his upper body to the lower section. He could no longer turn the caps on bottles and he had developed a classic ALS symptom of laughing or crying without warning.
As the disease began to weaken his body, breathing and swallowing became difficult. He decided to have a tracheostomy to help with his breathing and a gastrostomy tube (G-tube) for liquid feedings.
But this was not going to slow down a guy who loves adventure. He had been an avid swimmer and indulged in the sport year-round before his diagnosis. He was even known to poke a hole in an ice-covered Buzzards Bay to swim in winter.
This past year has not been any different in his quest to have adventurous itineraries. While he cannot do anything for himself, he is determined to “live large.”
He arranged for a group of good friends to go with him to Fenway Park for a Billy Joel concert.
“The concert was fabulous and the joy of live music in Fenway was priceless,” said Garber. “I can’t dance, never really could, but I can revel in the music.”
While he has a feeding tube and is not able to eat, Garber explained that he loves to go out to dinner.
He hosted an epic year-end “living large party” at a local restaurant for “the many, many friends and staff who make my life the joy it has been and continues to be.”
He also attended lectures and dinners in Boston and Worcester. While he concedes it takes organization and willing and strong caregivers to get him where he wants to go, it is always worth the effort.
It Takes a Village of Caring and Support
Family and friends provide assistance and support to Garber in whatever way is needed. Several Falmouth physicians give of their time to care for a man who was once dedicated to his profession like them. Joseph Cobb, MD and X.Y.David Guo MD, gastroenterologists now order and help maintain Garber’s G-tube. James O’Connor, MD, a primary care physician, and Thomas Irvine, MD, a pulmonary specialist, have stopped by the house to assist with medical issues and respiratory problems.
William Schutten, MD, a Falmouth ophthalmologist is on call for any questions about Garber’s eyes related to changes such as dryness, or infection. Dental care is provided by Michael Adams, DDS, PC of Falmouth, who has visited Garber at home on numerous occasions. Garber’s sister-in-law, Wendy Stern MD, an ENT specialist with Southcoast Physicians, did his tracheostomy.
“In my case, it has taken a village of doctors to keep me healthy,” said Garber. “They volunteer their time and services without question and because of their generosity my life is much more comfortable.” He also credits his staff and caregivers for their round-the-clock care and the Visiting Nurse Association of Cape Cod for its services.
He receives support from CCALS and from Ron Hoffman.
Even though Garber can no longer swim, he will be cheering for the swimmers who participate in his annual fundraiser on August 11. The event was started by two young women, Ali and KR MacDonald, who wanted to promote awareness about ALS and raise money for CCALS. It is now spearheaded by David’s daughters, Ari and Shoshanah Garber.
To donate, visit David’s Old Silver Swim or send a check payable to David’s Old Silver Swim to Dr. Fishbein at 2 Punch Bowl Drive, Falmouth, MA 02540.
All images courtesy of David’s Old Silver Swim; view the full photo gallery here.