As an Occupational Therapist, Barb Phillips has worked for nearly 10 years with persons diagnosed and living with Amyotrophic Lateral Sclerosis (ALS) ; a progressive, fatal neuromuscular disease that paralyses the muscles and leaves the patient unable to walk, breathe, swallow or talk without the use of special equipment. So in 1996, when she first detected a slight slur in her father’s speech, she feared the worst. Months later, her father was diagnosed with ALS, better known as Lou Gehrig’s Disease. During her father’s illness, Phillips found herself frustrated at not being able to adequately demonstrate her love for him. She finally asked her father if there was any task or activity that he wanted to do that he was no longer able to work on. Amazingly, what her father wanted most was to have the family’s New York home readied for the upcoming winter, as he had done every year prior.
While working with ALS patients as an occupational therapist at Rancho Los Amigos National Rehabilitation Center in Downey, CA, the idea of helping other ALS patients fulfill their wishes blossomed into the idea for a new volunteer program for the Greater Los Angeles Chapter of the ALS Association. She called it Simple Wishes. Since its inception in August 2000, Simple Wishes has directly touched the lives of more than 35 PALS (Persons with ALS) and their families. The program started by using occupational therapists from Rancho, but has expanded to incorporate volunteers from all walks of life – from students to corporate executives.
Some examples of ‘Simple’ Wishes that have been completed include compiling photos into albums for the grandchildren that one PALS will never know, writing a love letter to a husband of 35 years, tending to flowers so the PALS could enjoy her last days in her own backyard garden, and organizing a closet so a PALS’ father could move in. What is repeatedly impressive is the volunteers’ commitments to the PALS. Several volunteers went to great lengths to complete ‘not-so-simple’ wishes as well. One volunteer raised enough money for a PALS to get a helicopter ride over Los Angeles and up the coast, another arranged a meeting with Rick Fox from the LA Lakers and another compiled a video documentary of a Hollywood actor for his family.
In 2002, Phillips created yet another new program for the Greater Los Angeles Chapter of the ALS Association – a free loaner pool for EADL equipment. EADL is an acronym for Electronic Aids for Daily Living. They are remote controls that help ALS patients do everything from operating lights and controlling the television, to alerting systems that allow care providers to know that the PALS needs help.
When Phillips was married in April of this year, she and her husband asked wedding guests to make contributions to the new EADL loaner pool in lieu of gifts. Her dedication to helping improve the lives of thousands of ALS patients in the southern California area is an inspiration to all who know her and a living memorial to her father, Peter Weintraub who lost his battle with ALS in 1997.