The day couldn’t have started out more joyfully for Kathy Spencer, as she celebrated the impending birth of her grandson at a baby shower for her daughter Amy. But later that evening, she started to feel ill.
“I just thought I had the flu, so I got in bed,” she says of that October 2005 night. “But then my whole right side was paralyzed.”
In fact, Kathy had suffered a stroke, though she was an active 53-year-old with no preexisting conditions, no family history and a general good bill of health. As she spent the next 28 days in the hospital, she wondered if she’d regain function on her right side.
“I prayed. I begged God, ‘Please let me walk again. I don’t care about anything else,’” she remembers. While the birth of her grandson Aiden two months later provided a bright spot, the fact that she couldn’t pick him up was painful. “They’d lay him in my arms, and I couldn’t pat him. I had tears rolling down my cheek,” she recalls. “I really wanted to hold him, and that became another goal.”
Eventually Kathy decided there were three things she was determined to do again, no matter how long it took: “I said, ‘I want to pick up my grandkids. I want to give someone a two-armed hug. And I want to play the piano again,’” she says. “I’d played since I was in 3rd grade — just for pleasure, but it’s one of those things we take for granted.”
So she threw herself into rehab, traveling from her home in Carroll, Ohio, to Chicago to be treated at one of the nation’s top facilities. “I told them, ‘Give me two sessions a day,’” she says.
Despite Kathy’s determination and hard work, her doctors and therapists cautioned her that she might never be able to resume all the activities she was able to do pre-stroke. In particular, they said, by 6 to 12 months after the stroke, most patients have gotten back as much function as they can expect.
“It’s no fault of the therapists — they are told to teach us how to adapt our lifestyle,” Kathy says. “But I wish doctors wouldn’t tell patients what they’re not going to get. That takes away our hope, and you have to have hope to survive.”
Kathy tried anything and everything recommended to help regain full use of her right side, including acupuncture and reflexology. Nine months after her stroke, she enrolled in a study at a nearby hospital involving a device called the Bioness H200, which uses mild electrical stimulation to open and close the affected hand. She began using the device daily, and when the study ended a month later, she purchased one for her own use and kept working. “I would stand in my pantry and pick up cans for several hours,” she says. “I’d say out loud, ‘I’m opening up my hand. I’m picking up a can. I’m setting it down.’ I did that 7 days a week for 7 months.”
She also listened to CDs of piano music nightly and visualized how her fingers would need to move in order to play the songs. Gradually, her fingers began to get the message. A little more that two years after the stroke, she was able to play for short periods of time with the aid of finger splints, and about 5 months later, she could play for pleasure once again.
In all, she estimates that she spent 26 months, 7 days a week and up to 8 hours a day working diligently toward her recovery.
“I kept a little journal,” she says. “I would write down what had changed — any little change. Then I would look back and say, ‘Gosh, last month I wasn’t able to do this.’ I was celebrating those little successes.”
One day about 18 months after the stroke, she achieved her biggest goal when her daughter Karry and one-year-old granddaughter Zoey were visiting.
“I asked, ‘Do you mind if I try to pick up Zoey?’” she recalls. “Granted, my shoulder was weaker than it used to be, but I did it!” Now a grandmother of 11, she has plenty of opportunity to keep that shoulder strong.
And while Kathy was thrilled to return to work full-time this year as a middle school guidance counselor, she’s also found a second calling as a mentor to other stroke survivors. She participates in a monthly conference call for Bioness, in which stroke victims call in and ask questions about the H200. She’s involved with stroke support groups in her area and has even been known to approach people in public who appear to have suffered a stroke and volunteer herself as a resource.
“When I had a stroke, I had no idea what to expect,” she says. “So I consider it a privilege and a duty to share my experience.”