Living with ALS, and making the best of it
I have many stories that inspired me and moved me over the past year, but one of my favorites was the story about David Garber of North Falmouth, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS) seven years ago. Even though this disease has robbed him of so many physical things, including the ability to walk, eat, and speak, it doesn’t stop him from communicating, enjoying what he is able to do and making every moment count.
His willingness to share his story shows us that a sense of humor, the sound of music, the support and love of friends and family can make a journey just a little easier. – Roberta Cannon
It’s a late Sunday afternoon and the wind is 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 amidst a debilitating chronic disease.
When I enter the living room – now a bedroom – of the North Falmouth home, I hear a quiet swishing sound coming from the ventilator that helps David Garber breathe. New Orleans jazz music is playing quietly in the background. The sun streams in through large picture windows, outlining the medical equipment and furniture that stands 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 sits 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.
Garber is one of the approximately 21 Cape Cod residents living with Amyotrophic Lateral Sclerosis (ALS, also known as Lou Gehrig’s disease), according to Ron Hoffman, founder and president of Compassionate Care ALS.
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.
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.
A Dentist With a Thriving Practice
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, a radiologist at Falmouth Hospital and 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.
But this disease 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.
After closing his practice, Garber decided he would embark on a different kind of adventure. He and his wife, Andrea, went on a six-week, 6,500-mile journey across the United States without an itinerary. Their exploits are displayed in a book of pictures and comments, a treasure that is shared with others who visit their home.
Throughout that time period, Garber researched different options for treatment, and decided on a pre-clinical trial at the Hadassah Medical Center in Israel. It was a promising experimental procedure to stop the progression of ALS and improve the condition of ALS sufferers.
Garber’s stem cells were harvested from his bone marrow, grown in a lab over a period of a few months and then injected into his spine. This restored use of his right thumb for a short period of time but it did not last.
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.
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 said.
He also has support from Compassionate Care ALS (CCALS) in Falmouth and from Ron Hoffman. CCALS 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.
Even though Garber can no longer swim, he roots for the swimmers who participate in his annual fundraiser every August, David’s Old Silver Swim.
It was started seven years ago by two young women, Ali and KR MacDonald, who wanted to promote awareness about ALS and raise money for CCALS. Last year, 216 swimmers raised over $50,000 for the cause.
This year the swim, which is now spearheaded by David’s daughters, Ari and Shoshanah Garber, will be on August 13 at Sea Crest Beach Hotel in North Falmouth. Garber plans to be on the beach cheering on the swimmers with the same determination and passion he has for the sport and the organization that helps him and so many others living with ALS.
[Featured Image: Back Row, L-R: Mike Fishbein, MD; Serrita Williams, CNA; Giesele Castronova, friend of the family; and Ari Garber, David’s daughter. Front: David Garber.]