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Living Well with ALS: Glenn Freese

Glenn Freese is a people-person and musician who now advocates for those in assisted living facilities. 

Like many people living with ALS, Glenn noticed symptoms years before his official diagnosis. It started as muscle weakness in his left leg, and after a robust career in the music industry, he now lives in an assisted living facility in Ashland, Oregon. 

Glenn was a practicing musician throughout his life, proficient with the guitar, mandolin, and even the hammered dulcimer. He eventually formed the bluegrass band Foxfire, an ensemble he identified as “not necessarily traditional.” Foxfire has recorded five albums and performed at hundreds of shows and festivals. The band toured mostly across the West Coast, but also across the United States and Europe, including an East Coast circuit as part of the International Bluegrass Music Association’s annual festival. 

While he loves music, Glenn humbly identified himself as a “hobbyist” performer and highlighted his work as both a teacher and luthier (a craftsperson who works with string instruments) throughout his career. He taught private music lessons from the 1980s through 2010s and had his own store at which he repaired and restored instruments

At his home in Ashland, Glenn has since been dubbed, “the master of adaptation.” He takes advantage of adaptive tools like bowls with rubber on the bottom, which keeps them from sliding around the table. He is also a proactive planner and is looking into moving into a new living situation that will better support his increasing needs. While he has thrived in his current living facility, he wants to pursue a home with the robust, 24-hour care that his current home can’t offer; for example, something like adult foster care, which is typically geared toward a very limited number of residents in a single accommodation. 

Amid the challenges that living with ALS brings, Glenn stays engaged with the community his facility offers. He’s active as President of the resident council, a group that bridges the gap between tenants and department directors. He helps to increase overall enrichment by hearing and escalating resident concerns, a role that aligns well with his personality. He shared, “I love people – I’ve always been a people-person.”  

Throughout his disease progression, our care services coordinators connect Glenn with resources that help offset some of the practical and emotional burdens of living with ALS. For example, when Glenn began struggling to walk, Cassy Adams helped him borrow a scooter from our medical equipment loan closet. To assist with the many costs associated with ALS, regional care services coordinator Laura Geilenfeldt connected Glenn with our Financial Assistance Program. Glenn finds additional peer support through the Southern Oregon Support Group that Laura leads. 

Living with ALS can be uniquely challenging, and Glenn’s story is a remarkable example of continuing to invest fully in the present and future despite the difficulties.

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