Barb Brown’s determined recovery from life-changing strokes
By Michael Ransom Reading time: 8 minutes
Barb and Jeff Brown could not have been happier. Exhilarated and exhausted from their daughter Katie’s wedding a week earlier in Rochester, they packed their car to drive west in February 2012 for a few days in Colorado. They planned to visit their oldest daughter Kelly in Denver, ski with friends Darryl and Beth Solie at Keystone, and then drive on to California for a four-week escape from Minnesota’s winter. Colorado was one of the Brown’s favorite family ski vacation spots, and as they drove, Barb and Jeff reminisced not only about Katie’s wedding but also about their many ski trips to Colorado with their children Kelly, Kerry, Katie, and Jeffrey. Life was good.
Though they had no forewarning, their Rocky Mountain high soon would end. On a sunny, blue-sky day, as Barb trailed Jeff and the Solies down a ski run in Keystone, a thunderclap headache nearly brought her to her knees. “I thought I had been shot,” she recalls. She stopped, took off her helmet and goggles, and knelt down with her head in the snow. She had had migraine headaches, but this pain was like nothing she had felt before. She was able to ski ahead to Jeff, Darryl, and Beth and tell them what had happened. They flagged down a ski patroller who advised them to go immediately to the emergency room in Frisco. A spinal tap and CT scan revealed no cause for the headache, so the doctors speculated that high altitude had been the cause, and they had Barb drink some fluids. The next morning, Barb felt somewhat groggy but was well enough for her and Jeff to begin their drive to La Quinta, California. Three hours into the trip, Barb experienced another thunderclap headache. She and Jeff pulled into Grand Junction, where doctors performed a CT scan and an MRI, suspecting she had a spinal headache, but neither test revealed an underlying cause. Jeff and Barb spent the night in a nearby motel. The next morning, Barb felt good enough to travel, but en route, a third thunderclap sounded in Barb’s brain. This time she underwent tests at a St. George, Utah, hospital with the same results; doctors could not find a cause.
Jeff called a neurologist friend at Mayo Clinic in Rochester who surmised, like the doctor in Keystone, that high altitude was the culprit, so the Browns continued westward hoping that things would return to normal. But they would not. In La Quinta on March 5, following a short walk with Jeff near their condo, Barb became exhausted. “I’m going back to rest,” she told Jeff, “and if I need you I’ll call your cell.” Sure enough, Barb experienced her fourth thunderclap headache, and soon she and Jeff hurried to yet another emergency room. More tests were performed (still negative), and the doctors there were baffled, too, by what was going on. Barb saw a neurologist who prescribed the drug Maxalt, which is given frequently to treat repeated headaches, and told to take it when she felt a headache coming on. Maxalt is a vaso-constrictor. No one knew at the time that Barb should have been on a vaso-dilator, instead, so Maxalt may have worsened Barb’s problem.
Jeff and many others were growing concerned about Barb’s health; Kerry and her husband, Collin, and Jeffrey and his wife, Hayley, flew to La Quinta to see for themselves how their mother was doing. Sue Bouquet, one of Barb’s Rochester friends, stayed with her when Jeff had to leave for a short time. Barb says, “Nobody wanted me to be left by myself for any period of time, and I wasn’t.”
Over the next few days, Barb began to feel somewhat better. Maybe their Rochester neurologist friend was right; high altitude had been the cause. However, Barb awoke one morning, got up from bed, and stumbled. “Jeff,” she said, “I can’t feel my left leg.” The feeling returned as the day went along. Balance issues were one of her medication’s side effects, so Barb’s doctor attributed the numbness to it. A few days later, Barb began hallucinating. She knew that what she was seeing wasn’t real, but “It was very weird,” she recalls. Beth Solie said to her, “What’s scaring me most about what’s going on is that you don’t seem scared.” Barb recalls that Beth’s words made her realize how serious things were.
“She was right, I needed to get home.” Through amazing airline travel coordination by family and friends, Barb was soon being seen in the Rochester St. Marys Hospital Emergency Room where doctors thought she was having an aneurysm but then concluded that she had had a stroke. During an MRI and CT scan to determine the cause of her stroke (either vasculitis or reversible cerebral vascular syndrome (RCVS)), Barb began hallucinating, had another stroke, and was taken to neurology intensive care. While in the ICU, a brain biopsy ruled out vasculitis, so the conclusion was that RCVS—charley horse-like cramps in the brain—was the cause. Doctors said that in Barb’s case, RCVS had resulted from a “perfect storm.” She had a history of high blood pressure and migraines, was dehydrated from skiing at high altitude, was taking an additional medication, and was “coming down” from a high-stress (Katie’s wedding) experience. There is no treatment for RCVS headaches; they reverse themselves. RCVS patients are rare; only thirty had been seen at Mayo Clinic, and RCVS itself rarely causes stroke. In hindsight, maybe Maxalt triggered Barb’s strokes.
Following her second stroke, Barb lost all feeling on her left side. She could not walk, even with help. She could neither turn over in bed nor feed herself. Barb began daily physical, occupational, speech, recreational, and psychiatric therapy—with most sessions lasting up to an hour. Though exhausted from it, she had trouble getting a sound night’s sleep until the third or fourth night. When she awoke in the morning, rested, the reality of all that had happened sank in. She had remained incredibly calm since her first thunderclap headache. Now, though, alone in the quiet of her hospital room, she broke down and thought “This is not good.”
Stroke patients are advised that the sooner they start therapy and the harder they work the more progress they will see. Barb began exhausting rounds of daily therapy, and was determined to get back to the normal she had once known. Her work ethic, faith, and positive attitude kept her steady and focused. She never blamed God or thought “Why me?” As she says, “Things happen.”
Barb was fifty-seven when her strokes occurred. Today, five years later and after much effort to improve with therapy, she can look back on—and appreciate—how far she has progressed. She says, “The brain is an amazing organ. It has the ability to build new routes around damaged areas.” At the time of her strokes, Barb had been a nurse for twenty-five years, so her passion was caring for others. Therefore, it wasn’t surprising that her initial and biggest worry was that she would not be able to care for her grandchildren. (She and Jeff had three grandchildren at the time of her strokes; they have ten today.) Kelly and her husband had twins in 2015. Barb says proudly, “I flew to Denver on my own, rented an apartment, and for three months was there essentially by myself helping Kelly and her husband care for the twins. I felt so free. Being able to care for my grandkids and share their joys has been enjoyable and satisfying.”
Her main remaining frustration is that she cannot drive by herself, primarily because of visual spatial perception deficit. If Barb were to look at an egg carton containing five eggs, she would not be able to tell how many there were without taking them out and counting them one at a time. Also, she has a condition known as left-sided neglect; her left leg feels as if a twenty-pound weight is strapped to it. When she had a tough day, Barb longed for her before-stroke self. But she told herself (and continues to tell herself), “I am a different person now than I was before. I can’t return to the before-stroke me, so I must work with who I am today.” She found that it took as much emotional and physical energy to wish the strokes had never happened as it did to just go forward. So forward she goes.
To those early in the recovery process, Barb would suggest that they not set an improvement end date. For example, stroke patients may think that after a year they’ll see all of the progress that they will make. Barb had been an avid bridge player, but she could not play for about a year and a half after her strokes. She says, “My friends were nice enough to hang in there with me, and now I can play with them.” Also, as of two years ago, she couldn’t wrap all her Christmas gifts by herself; this year she could.
Barb feels that stroke patients should be open to all types of treatments. For example, she started acupuncture two years after her strokes. She also believes in focusing on what you can do—even the little things—rather than what you can’t. It has been difficult for her to allow time for her brain to rest. She has always been a type A person, so it took her awhile to accept that rest, rather than constant therapy, was essential. She continues to have good days and bad and during the latter reminds herself that she had good and bad days before her strokes. She says, “You tend to forget that and think that life was perfect before.”
“One thing I’ve noticed,” Barb says, “is what’s important in life now is different than what was important before. The little things don’t matter. If I don’t get something done—all of the Christmas decorating, for example—that’s okay. I have much more patience than I used to. I’ve learned how valuable good friends are. And I’ve realized, too, how hard it was for my family to see what I went through—maybe harder for them than for me. We’ve always been close, and we’re even closer now.” With this renewed appreciation for life, Barb eagerly awaits each new day and the joys it can bring.