John Repczynski has literally spent his life focusing on other people. As a camera operator, director, and producer for over 45 years, John had to be acutely aware, even anticipate, the movement of actors and athletes that he was filming, often synchronizing his own actions with theirs. Throughout his career, he was accustomed to being a “behind the scenes” person of influence. John worked on a wide and diverse range of projects including public broadcasting programming, sporting events, popular television shows, and even prestigious award shows, such as the Oscars. For his efforts, John himself won seven Emmy Awards and has been nominated 27 times. To work at this level in his field requires that a person have tremendous fine motor skills, mental stamina, discipline, and technical ability.
But in 2013, John had to refocus his attentions inwards as it was clear there was something happening to him that was beyond his control. It started with fasciculations – little twitches in muscles that we all get. They are considered to be so common that he was not immediately worried. But when John started to get myoclonic jerks in his arms that affected his ability to operate a camera, he became concerned.
“In September of 2013, I was a camera operator on the Emmy awards,” John recounts, “A new format was introduced into the show where a star gave a personal eulogy to a departed friend. Edie Falco of HBO’s ‘The Sopranos’ stood stage right, mourning the loss of James Gandolfini and became overwhelmed with emotion. Our director asked me to gently zoom in to a close up and then suddenly, my arm started to shake.
“I needed every trick I could muster to complete the move! Then I had to let go of the camera and hope that she would remain in the shot. America almost witnessed ALS in action. I was officially diagnosed that November and retired shortly thereafter.”
After receiving his diagnosis, John and Sandy, his high school sweetheart and wife of 48 years, decided it was time to leave Los Angeles and retire to their condo in Hawaii. After moving, John and Sandy searched the internet for resources and connected with The ALS Association Golden West Chapter.
“Connecting with the Golden West Chapter early on has been immeasurable,” John noted. “We have been able to have a sense of what challenges to prepare for through the Golden West Chapter’s support groups, the phenomenal guidance of the Chapter’s care manager, and the help of their community outreach team.”
“Being a caregiver is not easy,” Sandy shared. “This whole journey can be overwhelming. There are so many things that you need to know that you are not even aware of. It is comforting to share with other people who are going through the same thing. The meetings have been a godsend. We have learned so much we didn’t even know we needed to know.”
The Repczynski’s do not face these challenges alone but with friends, loved ones, and an amazing local “ohana”. The Hawaiian word “ohana” means family, but it means more than just immediate relatives and encompasses the spirit of inclusion and love and sharing within a community. Their daughter, Joanna, son-in-law Peter and five year old granddaughter, Katherine, fly often from New York to visit. Katherine has even earned gold status on Hawaiian airlines.
John and Sandy generously use their time to help others and they are a source of hope and encouragement to many. They actively engage in the ALS community, participating in several support groups around Oahu, learning for themselves and helping newcomers. “You come in totally overwhelmed and confused and we try to make everyone feel at ease, “said Sandy. “We eat, chat and socialize. It’s not just clinical conversation.”
John gives tremendous credit to his chapter care manager, Terryn Davis, noting that the intricacies of healthcare for people with ALS requires knowledge many doctors who are not ALS specialists do not have.
“The Chapter care managers provide much needed guidance for the many doctors and vendors that people with ALS and their caregivers need to navigate through” said John.
There are many unique challenges in living with ALS in Hawai’i,” said Terryn Davis, OTR, Golden West Chapter Care Manager in Hawaii. “There is a general lack of awareness, current medical treatment information, equipment, vendors, specialized doctors, and accessible public housing. There are also issues with timely referrals to neurologists, vendors not taking straight medicare, secondary insurance denying payment if primary denies, and zero facilities on neighbor islands for patients on trachs and vents. There is also the extreme high cost of living and isolation creates delays in information, care, equipment and services.
Every year, the ALS community in Hawaii work diligently throughout to increase public education and support during May ALS Awareness Month, and John and Sandy are always amongst the participants. “We gather at the state capital to take part in a memorial service for those who have lost their fight against ALS,” said Sandy. “As part of this service, a flower commemorating each person is strung on a lei which is placed around the statue of Saint Damien of Molokai. John adds, “Our care manager cries for every name that is read.”
Recently, John and Sandy were invited to share some of their thoughts and experiences at the Chapter’s Champions for Care and a Cure celebration in Los Angeles. “To quote the Dalai Lama: ‘Pain is inevitable. Suffering is a choice.’” said John. “The Golden West Chapter provides us with a better choice.”
John has also used his talents in other ways, including helping with producing a public access television series for the Chapter entitled, "Your ALS Connection", which broadcast in Hawaii on the Olelo network.
“One thing I have vowed to do, is to make a positive difference while I still can,” said John, “A big part of the Chapter’s success has been people coming together and asking their network for support. The ALS community, now and in the future, will benefit our efforts!”
John and Sandy have been among the top fundraisers for the Hawaii Walk to Defeat ALS for several years. “Sandy has been instrumental in leading the way raising funds for the Hawaii Walk to Defeat ALS,” said John. “All proceeds from this important community outreach event will directly help families facing ALS in Hawaii served by The ALS Association Golden West Chapter.”
The Hawaii Walk to Defeat ALS is the main focus in Hawaii in support of our mission, through fundraising, raising awareness, educating, and building community for families touched by ALS. Over the last six years, the Walk has raised $463,000, and currently at 50% of our $130,000 goal for this year’s Walk on September 15. These funds mean continued growth in the services we offer statewide. We always need people from the community to walk with us, raise awareness, and help celebrate those living and those lost to ALS.
John faces his diagnosis with determination and unwavering humor. “I do my best to stay upbeat but living with ALS is not easy,” said John. “But I choose laughter over crying as much as possible when facing the many daily challenges. It helps so much having Sandy. She has been my biggest supporter.”
Sandy adds, “John’s diagnosis suddenly meant that everything had to change. We keep the focus on what our relationship has always been, and it has always been about our friendship. Our relationship has grown in so many ways and we are always learning new things about ourselves and our relationship- even after 48 years!”
The ALS Association Golden West Chapter is grateful to John and Sandy Repczynski for their phenomenal outreach and fundraising efforts to support the ALS community we serve.
John and Sandy with Team Ohana at 2016 Hawaii Walk to Defeat ALS