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Living Well with ALS: Sherry LaSalle

Sherry’s story highlights the importance of support systems and proactivity in navigating this challenging disease.

A California native, Sherry LaSalle moved to Oregon in November of 2020 at the behest of one of her daughters, who has in-laws living in Jacksonville. Now, Sherry overlooks the Rogue Valley in her Medford home, sharing the space with her husband Jack, two daughters (Erin and Tara), a son-in-law (Chris), a granddaughter (Paige), and three dogs: Chewy, Ellie, and Jasmine.

Before her ALS diagnosis, Sherry was an avid traveler and hiker, backpacking Mt. Whitney – the tallest mountain in 48 states at 14,505 feet elevation – at 50 years old. She was also a nurse: she worked in the ICU for 20 years and with breast cancer patients for five, until she developed ALS symptoms in 2018. She noticed issues with her throat and soon received a diagnosis of bulbar onset ALS. Bulbar onset makes up 25% of cases and impacts the muscles of the face, head, and neck before the limbs. Demonstrating the devastating impact of the diagnosis on her life, Sherry said, “I consider myself disabled from the workplace, not retired.” 

Several beaded fairy crafts

Learning to Adapt to ALS

Today, Sherry continues to adapt with every new challenge. For example, before ALS, Sherry loved to craft. Scrapbooking and jewelry-making were all in her wheelhouse, and she still has an Instagram account showcasing her various creations over the years. One of Sherry’s daughters fondly recollected “Sherry’s Fairies” (pictured), a beaded craft with a striking resemblance to their mystical namesake.  

While she can no longer make crafts with her depleted arm and hand capacity, Sherry expresses her fondness for the hobby by enjoying the work of others at scrapbooking conventions. Sherry also reads now more than ever; in fact, at the time of our interview she had read 18 books in just over a month, including everything from mysteries, to romance, to nonfiction. More than anything, Sherry emphasizes the support of her loved ones through every step of the journey, sharing, “My family has been the rock… family is important to me.” 

Sherry also adapts with the help of medical equipment, taking a proactive approach to her care. Sherry and her family love Disneyland – so much so that they used to go as many as three times each year – and she’s tried out a few of the accessible rides on her portable wheelchair. While she can still use her voice, she stays ahead of her disease progression, sharing that, “we keep thinking about what I’ll need next.” Thanks to hands-on training from ALS Northwest, with additional support from Team Gleason, Sherry is prepared with eye gaze technology for future communication needs. She also has a stand assist from ALS Northwest.

Advocating for ALS Treatment and Awareness

Advocacy for better treatment and awareness of ALS is also important to Sherry. She says, “The problem is that we need more advocates for us. [ALS Northwest]… can be our voices when we are gone, helping others lobby for what we need.” She uses the muscles in one of her fingers to operate her phone and computer mouse to stay connected digitally, using Facebook groups to learn about evolving advocacy efforts in the ALS community. 

Sherry says, “I now lead a new life, one that is family focused, and I have a big support system – one of love and support.”

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