Are you a caregiver, person living with ALS or PLS, or experiencing grief from the loss of a loved one?
Steve Florin of Jacksonville, Oregon is a loyal attendee of the PLS support groups hosted by ALS Northwest. He resides alongside his wife Patricia with whom he has shared 48 wonderful years. Care Services Coordinator Mary Rebar facilitates virtual support groups for the people in our region who are living with PLS (primary lateral sclerosis). Learn more from the Mayo Clinic about PLS.
Steve’s life has been marked by three distinct careers: he served as an environmental engineer at the EPA during the 1970s, worked as a technician in medical research laboratories, and for 22 years, he and Patricia proudly owned and operated an organic farm in Southern Oregon. Their beloved 20-acre farm held a special place in their hearts, but due to Steve’s declining mobility, they came to the difficult yet necessary decision to sell it. Transitioning from 20 acres to a mere 1/3 acre was a significant adjustment. However, Steve still cultivates a thriving garden. He tends to eight raised garden beds, cultivating an impressive array of peppers, summer squash, cucumbers, carrots, kale, cabbage, various flowers and lettuce.
Around a decade ago, Steve began experiencing difficulties articulating certain words. Initially chalking it up to getting older, he eventually sought medical advice in 2018. His doctor referred him to a neurologist, and in February 2019, he underwent an electromyography (EMG) at OHSU, resulting in a diagnosis of ALS/PLS. A little over a year ago, a local doctor confirmed his condition as PLS, short for primary lateral sclerosis. PLS is a motor neuron disease akin to ALS, characterized by a slower progression and, in most cases, not being fatal.
Living with such a rare disease has presented its share of challenges for Steve. Due to his speech difficulties, people often mistake him for being intoxicated, and many people he meets have never heard of PLS. Consequently, Steve places great value on the quarterly PLS Support Groups, which serve as a vital source of support and community. Steve said, “Those are my people. I’ve learned so much from them, like how to plan for the future and live in the present. They are really a community I identify with and gain so much knowledge and support from.”
In the present day, Steve is navigating the delicate balance between utilizing his abilities to the fullest and preparing for impending changes. It’s frustrating to lose his physical mobility because he used to be incredibly active in motor cross, softball, karate, dancing, and more. Nevertheless, Steve has embraced acceptance as a fundamental aspect of his journey and strives to embody the Serenity Prayer. He initially scoured the internet for information about ALS and PLS but now finds solace in avoiding an excess of such research. Instead, Steve can be found tending to his garden (and barbequing what he harvests), practicing yoga, and doing his best to maintain a sense of humor. He focuses resolutely on what he can achieve and the joys that life continues to offer.