By Jake Grubb, Special to the Independent
In a world full of warnings about unseen perils, unpublicized health risks and untreatable diseases, some turn to diet, exercise or yoga as combatants while others prefer sipping tropical drinks over California sunsets to thinking about such threats. But more often than we’d like to admit, warnings about health and wellness originate from authentic medical accounts.
Local coastal activist Mark Babski seemed to be a person patently unsusceptible to illnesses or disease until one day he got lost on his bicycle while riding a familiar route home. Babski, a brilliant and physically fit computer scientist who is devoted to ocean causes, preferred not to talk about this anomaly until his wife Isabelle pressed the point. After visits to Mission Hospital and referrals to brain specialists, Mark Babski was ultimately diagnosed in 2014 with an invasive brain affliction, Posterior Cortical Atrophy (“PCA”), a rare variant of Alzheimer’s disease that attacks post-middle-age men and women.
An avid wave rider and 25-year ocean environmentalist, Babski’s die-hard coastal commitment began as a result of his dedication to surfing. In the late 1980s this passion led him to non-profit volunteerism that would aid local coastal causes. It was while stuffing ocean-issues mailers for San Clemente-based Surfrider Foundation in late 1992 that colleagues discovered Babski was a computer scientist and multi-degree holder from both Stanford and Johns-Hopkins universities. He was immediately hired as Surfrider’s national office technology manager for a salary amount of “whatever you folks can pay if you ever have any spare dollars.” Ignoring compensation, Babski orchestrated technology-driven information tools for the benefit of concerned beach-goers, surfers and all those who valued the coastal environment.
Babski introduced Surfrider, its members, chapters and schools to the then-new internet, an ingenious tool called email and a curio known as the web. Babski launched the first Surfrider website, educating beach and ocean enthusiasts on the conditions and vulnerabilities of our coasts. Comprehending the vital importance of information distribution and data collection for coastal issue solutions, Babski became the activist technology ninja whose communication tools illuminated ocean causes for varied constituencies; citizens, educators, government agencies, corporations and funding sources. This effort was persistently multiplied over the years and continues in earnest today.
There is presently no known cure for Babski’s PCA brain disease. It is progressive, yet efforts are being made through research and clinical trials to fight it. In his current condition Babski is alert, can communicate and is physically able. But at its current stage, his disease has wiped out his prodigious mathematics and computer programming capabilities.
PCA, in the meantime, is baffling the country’s finest brain specialists. And unfortunately, there don’t appear to be specific eureka solutions or treatments on the horizon, with the exception of select clinical trials. Those who suffer from PCA retain their lucidity, such as the ability to hold a conversation, late into a seven to 10 year life expectancy, but other brain-driven functions degrade, such as the ability to access blocks of memory information necessary to put words to thoughts.
Physical examples are equally baffling. Babski, now 53, of San Clemente, still has the eye-hand coordination required to hit a ping pong ball, yet may lose spatial orientation as to what room he is playing in. Similarly, when in the ocean he can paddle and ride waves, but he is unable to safely find his way to and from the beach. He can no longer drive a car and must be guided when on his beloved mountain bike.
Despite his cruel and progressing PCA disease, Babski’s passions for his family and ocean causes remain strong. He is facing an epic battle with the will of a warrior, the unflinching support of his wife Isabelle, the adoration of his two college-age sons Otis and Ezra and the care giving of his brothers, sisters and close friends. While concerted efforts are underway toward Babski’s acceptance into one of the few planned PCA clinical trials, his care and therapies are continuing but at significant expense.
For those wishing to help Babski’s cause, assistances are being graciously accepted at:
https://www.gofundme.com/ocean-activist-in-battle-for-life
The author is a former Surfrider Foundation executive director.
