When Los Gatos resident Deb Shaw woke up one morning in September 2016, she knew something was very wrong: Her entire right side was incapacitated.
Shaw had suffered a PONS ischemic stroke, one that occurs in the brainstem, in her sleep.
She spent seven days in the Good Samaritan Hospital ICU and then another 37 days in the stroke recovery unit of Good Sam’s Mission Oaks Campus. Shaw describes this place, which has 15 beds that are always filled, as a great blessing.
“The people here became my life coaches,” she says. “The place was like a boot camp. We had to get up every morning at 7 a.m. and get dressed, then began four to eight hours of aggressive therapy.
“You have to get the brain and the body working after a stroke, with a combination of physical therapy and virtual therapy.”
While in the rehab center, Shaw saw many survivors struggling because they had no family or friends to assist them. She thought it would be useful to formalize the mantras, the processes and the daily routines she found helpful in her own recovery journey. She and her husband Bob created Champion the Challenges, an organization to help stroke survivors and their families access the hope and resources they need to recover.
Their website is filled with videos, survivor stories, insight from therapists and a series of booklets they created help stroke survivors find pathways to dealing with each hour of a day, finding little victories in the simple act of taking a step or being able to finally grasp a spoon. These booklets are given to stroke patients when they leave the hospital.
Shaw’s road to recovery has been bumpy; she suffered two more strokes, the last one in May 2019.
“One of the things that kept me going is the concept of the three P’s: patience, positivity and practice,” she says. “You have to remain positive, be patient with yourself, and above all, practice the exercises the therapists recommend.”
Today, she has regained most of the use of her right hand and arm, but still can’t lift it above her head.
“I have to have Bob do my hair sometimes,” she admits, “and put on my false eyelashes.”
While a positive mindset has helped in her recovery, Shaw notes, “It’s taken four years of working five to six hours a day to get here.”
Technology plays an increasingly critical role in stroke recovery. The Shaws are working with a company in Alameda that makes tools for rehab called REAL System VR Rehabilitation. They’re also working with Flint Rehab, provider of FitMi home neuro rehab systems. Shaw has used both to great benefit in her recovery, and the couple are actively looking for additional technologies that can potentially help others.
“When I put on the REAL headset, I am in my own world of possibility,” Shaw says. “They asked me what was the one thing I wanted to accomplish. I’m an avid birdwatcher, so I told them I wanted to be able to have a bird land in my hand and put it back in its nest. That I could make that happen with this VR technology was a game changer.”
She uses the FitMi device daily to keep her hands and legs limber and to increase overall movement. Her top goal now is to drive her car again.
The San Jose company Web Inertia designed the Champion the Challenges website.
“After agreeing on a proposal, they suddenly went quiet for a long time,” Bob Shaw says. “Their lead designer had suffered a stroke, a TIA. They told us they had never been so motivated to work on a project. They have a different level of conviction.”
It’s a goal of Champion the Challenges, he adds, to create a space for stroke survivors to share their stories.
“We hope that people will learn about what others have been through and that it will help them in their journey.”
For more information, visit https://www.championthechallenges.org.