Feature story — Judi Johnson
By Lisa Legge
Judi Johnson was a rising star in 1991. The American Cancer Society had transformed her PhD dissertation into a national patient education program, called “I Can Cope,” and she had become a nationally renowned speaker. She broke more ground by helping establish Minneapolis’ first hospice, then brought media attention to hospice and cancer nursing when she coordinated nursing care for Sen. Hubert H. Humphrey during his final weeks.
Then, in September, 1991, she experienced a stroke. Slim, active and healthy, she was an unlikely candidate for stroke. She admits that even she didn’t know the enormity of it all. But some people — in an attempt to encourage her — wasted no time telling her she should write a program similar to I Can Cope for stroke survivors.
“A lot of people reminded me that because I had taught so many people how to cope, I of course would know how to cope [with the stroke], thank you very much, and that now I had another mission,” she says in her plain-spoken, often wry style. “And I thought that would be something I could just do right away. But I was not ready. I had to get myself healthy again — physically, mentally, emotionally and spiritually — before I could start doing something for somebody else.”
But Johnson kept the idea in the back of her mind throughout her 18 months of rehabilitation and for years after that. “I always knew that sometime, some way, I was going to do it for stroke survivors,” she said. “Maybe it speaks to meaning in life again.”
With that seed of an idea, she talked with Lindsey McDivitt of the Courage Center, a rehabilitation center in the Minneapolis suburb of Golden Valley. McDivitt worked with stroke survivors who had completed rehabilitation and were on their own again. “She saw they were looking for something,” Johnson said. “They were hungry for information and support, and there just wasn’t that much out there. They were floundering.”
Johnson’s star continues to rise. Continuing her active role writing and speaking nationally on cancer care, she branched out to stroke care. She wrote a grant application and in 1995, the American Heart Association agreed to fund a year-long demonstration project, co-sponsored by the Courage Center and North Memorial Health Center. After a broad needs assessment, she and McDivitt decided to target people who had experienced a stroke at least six months earlier and were re-entering the community. Johnson designed a holistic approach addressing the physical, emotional, social economical and spiritual aspects of adapting and living with stroke-related disabilities.
The demonstration project — dubbed StrokeWise — was a success. Measured against the control group (which took part in the course over the next eight weeks), participants’ depression dissipated and hope and ways of coping rose.
The outcomes one year later convinced Johnson even more that the course made a difference in people’s lives. The biggest difference for Johnson, however, was participants’ activity level one year after taking the course. Of 30 respondents, 13 still take part in support groups, 15 walk regularly, 22 know their medications better and four began using acupuncture for pain relief, spacicity or balance. They also reported taking up 11 new hobbies or activities, among other positive indicators.
One respondent wrote: “I hope StrokeWise can be made available to all who survive a stroke. It helps to see how others try to cope [and you learn] to apply their examples to your recovery. I hope to maintain contact with some of the friends we met there [to] exchange ideas.”
“The overall goal is to empower people to learn self-care strategies for living with stroke-related disabilities,” Johnson said. “The key is empowerment and knowledge that really stresses self-care, because so many survivors get more and more dependent on their care partners.”
Four participants from last year’s initial study experienced a second stroke, and two of these died. Johnson cites statistics showing that stroke survivors are five times more likely to experience a subsequent stroke than someone who has never had one. That points up the importance of daily blood-pressure checks, similar to diabetics testing their blood-sugar levels, Johnson says.
Today, North Memorial Health Center in Robbinsdale and St. Luke’s Medical Center in Duluth offer the eight-session course twice yearly. The American Heart Association plans to offer the complete package, including promotional and teaching materials, outlines and objectives. Johnson travels nationally and internationally to discuss her work, which of course includes education for stroke survivors.
StrokeWise starts out with a discussion of the words stroke survivors and those around them use to describe their new lives. Words can be powerful, Johnson says, so she suggests group members use terms like “experienced” a stroke (rather than “suffered” one) and that they refer to themselves as stroke “survivors,” not stroke patients, clients or — especially — victims. “I really object to seeing the word ‘victim’ in writing,” she said. “I also try to get people not to talk about their ‘bad’ side because it’s really part of you. Who likes to live with something bad? Instead, we have a strong side and a weak side and the strong side gets to help the weak side.
“I also try to get them to say “care partner” instead of caregiver... even that is a frame of mind reference: What can I give as well as what can I take from somebody? It is a shared responsibility,” she said.
StrokeWise discusses preventing a second stroke through nutrition, exercise, appropriate use of medications and stress management. It emphasizes continuing rehabilitation. Professionals address how to build self-esteem and confidence, affirm sexuality, communicate feelings and treat the body as whole — that is, not neglecting the affected side.
Johnson addresses the class at the end of the course. She presents a whimsical Mary Engelbreit print in which a person faces a fork in the road. A sign designates one path as “Your Life” and the other as “No longer an option.” She uses the print as a way to help stroke survivors accept their new lives, their new identities.
“To me, that picture is really prophetic,” Johnson said. “I thought for a long time — and other people reinforced it — that I was temporarily on a detour in life and eventually I would come back to the road I left and go on as before,” she says. “But instead, this is the way it is. This road keeps going and truly goes in another direction. It has a whole other view, a whole other set of people to travel with. The previous road is no longer an option in my life.
“Some people still see me as a cancer nurse who has had a stroke. They ask how I am, what I’m doing. But I’ve gone past that. I have this other life now that is so rich, so full and so different that I can’t explain it to them because they have yet to see me that way. They see me as having lost a lot and not having gained anything.
“To me, this (Engelbreit) picture really sums up what it means to adapt,” she said.