When I had the opportunity to work with my first ALS patient in 1997 as a home health occupational therapist, I discovered that there were no local patient services offered for ALS patients on the Central Coast.  People living with ALS in this area felt isolated and had difficulty finding quality care locally.  When I approached The ALS Network about helping me to find other local patients so I could start a support group, they were happy to help.  I held the first meeting of the Monterey Bay support group in 1998 and the first meeting of the SLO support group in 2000 and we have had monthly meetings ever since.  Since the disease progresses so quickly patients and families have difficulty keeping up with the constant changes.  I approached the ALS Network again about supporting me in being able to do regular home visits with the patients here locally and they responded by creating a care manager position.  I became the Central Coast ALS Patient Care Manager and there are now many other patient care managers servicing different regions in California as well as Hawaii.  I also noticed that patients often found it impossible to travel to the ALS clinics in the Bay Area due to disease progression and voiced concerns about this since the clinics give such excellent comprehensive multidisciplinary care.  ALS Network again stepped up and helped to establish our local UCSF Monterey Satellite ALS clinic. There are now several other satellite clinics sponsored by the ALS Network in Northern California, the Central Valley, and Santa Barbara. The organization also supports local patients and families with a robust equipment loan program so that patients can donate equipment they no longer need to be used by other patients.   Though there is currently no cure for the disease, proper care enables patients to obtain the treatments, equipment, and technology available to attain the highest quality of life possible while we work towards a cure.

I have participated in the annual SLO Walk to Defeat ALS every year since it began.  Last year the event was expanded to include bike riders as well as walkers and rollers and the Central Coast ALS Ride and Rally was born.  It was so much fun to bring our ALS community together at this event which includes live music and a free lunch.  Money raised goes directly to the many programs and services the ALS Network provides free of charge to families living with the disease.  So bring your friends and family and join us on Saturday, August 24th!

For those unfamiliar with ALS, here are some facts about the disease:

Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.This crippling disease can strike anyone. Presently there is no known cause of the disease though support is bringing researchers closer to an answer. In the mean time it costs an average of $200,000 a year to provide the care ALS patients need.

I appreciate your support!

Thanks!

Julie