Stroke rehab program running out of time

Residents lobby Palo Alto to keep space for REACH

When he experienced a stroke at age 57, Alan Knapp's life changed overnight.

The fit and active retired aerospace engineer lost the use of his right arm as well as the ability to speak easily and form sentences.

It's ironic because he was always so eloquent, said his wife, Jill Knapp, of her husband, who had served as a Russian-language linguist for the U.S. Army in the Vietnam War era and holds a degree in architecture from UC Berkeley.

After the stroke, she said, "We just kind of set our lives on 'restart' and the ground rules changed."

Now, 16 years later, Knapp is able to drive himself to his daily activities and recently hung a screen door at the couple's house in Los Altos. But he still works every day to progress against continuing major challenges with speech and movement.

"He's got a great attitude, and I think that's kind of carried us through," Jill Knapp said. "We married for the long haul -- it could just as easily have happened to me."

For the past 15 years, the couple has found both therapy and camaraderie with others in similar circumstances at REACH, a four-day-a-week program at Cubberley Community Center that serves people recovering from stroke and other traumatic brain injuries.

"At REACH, slowly I got better," Alan Knapp said -- slowly -- in an interview.

The Knapps and other REACH families are now lobbying the city of Palo Alto to continue to make low-cost space available for them. The program's lease is up this month as Foothill College -- with which REACH was affiliated until 2012 -- vacates Cubberley for a new satellite campus in Sunnyvale.

REACH has served more than 2,300 stroke survivors since it was launched in 1989 by a Foothill College instructor who herself had survived a stroke at a young age. The program operated through Foothill until 2012, when funding was cut and REACH became an independent nonprofit. Until now, Foothill has continued to offer the space at Cubberley for free.

"Coming to the REACH program allows (students) to be who they are now -- after the stroke," said Linda DiNucci, a surgical nurse-turned-speech therapist who has headed the program since 1994.

"So it's not the CEO and it's not the mailman or the homemaker. They're who they are now and dealing with the repercussions of the stroke, and this environment allows them to flourish."

The program is conceived as an "educational setting with a medical overlay," DiNucci said. In three classrooms with sliding, adjustable walls, students work in small groups with licensed physical therapists, speech therapists and occupational therapists. They work on a wide range of activities -- tossing beanbags, applying frosting to cupcakes, playing card games, working on stairs or parallel bars, watching their faces in the mirror as they pronounce words.

Participants are never called "patients" or "victims" -- only students, DiNucci said.

"Being a student means having some control over what you're going to do because, after a stroke, half the time everybody tells you what to do," she said. "When they come to REACH they get to make choices and that empowerment is key: 'Hey, I've had a stroke but I can still be me.'"

Students range in age from their 40s to their 90s, with most in their 60s and 70s, DiNucci said.

Palo Alto resident Jerry Martinson, a retired middle school teacher, began taking classes at REACH in 2012, a year after experiencing a stroke at the age of 77.

"The most important thing is the support that we have given to each other," he said in a recent interview.

"That's as important as anything else," Martinson's wife, Mary, added. "The fact that we're with a group of people that have similar limitations -- some more severe, some less severe. Everyone is so supportive of everyone else. We've developed some very good friendships, and everybody cheers everybody else on.

Students are often referred to REACH by their medical providers once the insurance coverage for one-to-one care has run out. Despite the conventional wisdom that "'If you haven't gotten it back within six months to a year of your stroke, that's as good as you're going to get,' that's simply not what we see at the REACH program," DiNucci said.

"Even if the progress is not as dramatic, or as much as you want it to be, it still continues," she said. "We've had people who came to the program with virtually no language and two years later they're saying words and they're saying sentences."

Jill Knapp said she and her husband recently spent an evening at the home of a friend they'd met at REACH. "This is somebody who met Alan after his stroke, which is a real boost to your ego to make friends after your stroke and to have that kind of level of tolerance and appreciation of what you've been through."

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13 people like this
Posted by George Jaquette
a resident of Palo Verde
on Sep 2, 2016 at 8:24 pm

Thank you Chris for a thoughtful and well-written article. REACH is a hidden gem at Cubberley, serving people who have gone through tough life changes and who struggle every day to recover the abilities they once had.
A stroke is a life-changing event, and anyone who has spent time with a stroke survivor should appreciate the angels that work in this non-profit. True professionals, focused on improving the lives of students, caring week after week and celebrating each success.
Palo Alto is blessed to have so many well-meaning people and capable organizations serving those in need. REACH Is one more example of great people helping others, supported by the broader community and by the city. The impact on individual's lives is ENORMOUS, and the benefit that each student derives from the care and support and community that REACH provides cannot be overlooked or minimized.
Palo Alto faces many tough decisions about Cubberley, and the path forward for the property and the many organizations that count on it for home is murky. We can only hope that the city considers each case carefully, and maintains or creates a place for REACH in Palo Alto.
You can get more information about the program and the people here: Web Link and you can support the non-profit via the Donate bottom at the bottom of the home page.
Thanks to the many great people who work at REACH, and especially Linda DiNucci who is the vision behind the organization and the body who makes it all work.
George Jaquette, Palo Verde neighborhood

10 people like this
Posted by Resident
a resident of Fairmeadow
on Sep 4, 2016 at 9:56 am

There are so many wonderful programs at Cubberley, yet the attention it gets from the city and the school district is at a shameful level. Minimal maintenance is applied to this location, though it provides an excellent array of music, art, dance, education, and rehabilitation programs. City should protect these programs by providing low cost rental at several locations throughout Palo Alto, and should maintain the grounds in a much better way as it is an integral part of community.

5 people like this
Posted by Anonymous
a resident of Another Palo Alto neighborhood
on Sep 4, 2016 at 11:02 am

PAUSD should move its office off the Paly Campus to Cubberley so they might get a clue. It also might stop them from gold plating Paly.

11 people like this
Posted by Mary M Rodocker
a resident of Duveneck/St. Francis
on Sep 5, 2016 at 9:39 am

Thanks for the well written article about REACH. I have been able to utilize the excellent Cardiac Therapy Foundation at Cubberley and have long been aware of the REACH program. Both of these programs should be a source of pride for Palo Alto residents, as they are unique and extremely beneficial to participants and their families. Neither are covered by insurance and yet have managed to thrive because of their excellent leadership and commitment to the communities they serve. Linda DiNucci, at REACH, has kept that program alive despite many obstacles, both financial and administrative. Her dedication to her students and her philosophy about stroke and TBI's make all of us a little more humble and a lot more informed. The city of Palo Alto should do everything possible to keep these programs viable.

3 people like this
Posted by Stephanie M
a resident of Charleston Meadows
on Sep 6, 2016 at 7:05 am

Thank you Chris for highlighting this program in our community. As a medical professional at the Palo Alto VA Hispital I strongly support programs which build ones quality of life and empowers both the individual and family.

2 people like this
Posted by JIll Knapp
a resident of Los Altos
on Sep 6, 2016 at 5:57 pm

Thank you for interviewing us, Chris. We hope REACH finds a home and continues its good works!
We are so very grateful to all of our friends and family who helped us and visited Alan in the hospital and in rehab; one family, daily. Words cannot express how much it meant and still means to us.

Like this comment
Posted by Mary Ann Napoleone
a resident of Stanford
on Sep 10, 2016 at 7:27 am

I live in Gulf Breeze, Florida. REACH and Linda DiNucci own a special place in my heart for their caring, competent work with stroke victims.
Palo Alto is blessed to house this program. May REACH continue in Cubberly where its students reach out and thrive.

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