Finding Hope After Stroke

Joan Jackson
By Joan Jackson December 15, 2016 23:35

A stroke can be devastating.

Survivors may suffer partial or total paralysis, weakness, memory loss, impaired decision-making, vision problems, speech and language issues, dramatic changes in behaviors and a devastating range of other symptoms.

According to the Centers for Disease Control (CDC), stroke is the fifth leading cause of death in the U.S. and a major cause of long-term disability.

Until fairly recently, stroke survivors were prescribed up to six months of physical therapy and told not to expect any appreciable progress after that.

Anne Burleigh Jacobs of Tuolumne, a physical therapist and expert on post-stroke recovery, disagrees.

“My mission is to let people know this is not true,” says Burleigh Jacobs, 53, who holds a doctorate in neuroscience and physiology. “The brain has over 85 billion neurons, some receiving input from as many as 10,000 other neurons. The number of connections is phenomenal. We continue to learn.”

Although many health-care providers and insurance companies still adhere to the old six-month guideline, ongoing research has fostered growing scientific support for long-term post-stroke rehabilitation.

“We used to believe the adult nervous system was fixed,” Burleigh Jacobs says. “It’s not.”

Nearly 800,000 Americans will suffer a stroke in the coming year, according to the CDC, and more than 130,000 will die.

A stroke occurs when the flow of blood and oxygen to the brain is interrupted, either by a clot or sudden bleeding. Without oxygen, brain cells start to die within minutes. The parts of the body controlled by the dying part of the brain will no longer function the way they should.

“It is important to recognize that while many brain cells die,” Burleigh Jacobs says, “many others go electrically silent in an effort to survive.”

While stroke recovery may be long and difficult, the brain has the capacity to reorganize itself by switching on silent cells and forming new neural connections throughout life, according to Burleigh Jacobs. Part of recovery is retraining and rewiring the brain.

Burleigh Jacobs has made it her life’s work to teach stroke survivors and health professionals worldwide how to retrain the brain and body after neurological damage. Her background includes a degree in physical therapy from the University of Colorado and a doctorate from Oregon Health Sciences University in Portland.

After researching, working, teaching and lecturing in Europe and several U.S. states, Burleigh Jacobs settled with her husband and two daughters in the Silicon Valley. In 1999 she co-founded the Peninsula Stroke Association and for three years served as its executive director. She also maintained a private clinic in Los Altos.

But she and her family grew tired of their busy urban lifestyle. They escaped to the mountains almost every weekend and started to plan a small cabin. Cabin plans became house plans.

Seven years ago, when their eldest daughter was starting high school and their younger daughter middle school, the family moved to Tuolumne. Burleigh Jacobs now sees patients in private practice and at Sonora Regional Medical Center.

Her message to patients: Brains of any age – including those severely injured by stroke – can change. Stroke-injured brains take more time to make adjustments and the correct exercises must be practiced at the correct time.

There are two types of stroke:

  • An ischemic stroke occurs when a clot blocks blood flow in part of the brain. About 87 percent of all strokes are clot-related.
  • A hemorrhagic stroke happens when a blood vessel ruptures or an aneurysm (a bulging or weakened blood vessel or artery) bursts, bleeding into the brain.

The emergency treatment for a stroke caused by a clot often involves a medication called tissue plasminogen activator or tPA. It helps dissolve clots, restoring blood flow to the brain, but must be administered within about three hours to be most effective. Specialized medical centers also have retrieval devices that can be threaded into an artery to remove the clot.

Treatment of hemorrhagic strokes depends on the cause of the bleeding; they are generally treated with surgery and medication.

Who most often suffers strokes? Demographics are changing.

“It used to be older people,” Burleigh Jacobs says. “Now we see a lot more 55- to 65-year-olds having strokes. In many ways our more stressful lifestyles are increasing the risk of stroke.”

Children and even fetuses can suffer strokes, but risk rises with age. Chances of having a stroke nearly doubles for each decade after age 55, according to the National Stroke Association.

The primary risk factor for ischemic stroke is high blood pressure, says Burleigh Jacobs.

Smoking, heavy alcohol use, diabetes, atrial fibrillation, and sleep deprivation are also risk factors. Adults over age 45 who sleep fewer than six hours a night are twice as likely to have a stroke as those who sleep more, according to a study cited by the National Sleep Foundation.

While lifestyle and health choices are key to ischemic strokes, family history plays a major role in hemorrhagic strokes. A 2010 Boston University study found that children with a parent who had suffered such a stroke by age 65 had twice the risk of stroke at any age, and four times the risk by age 65.

Transient ischemic attacks (TIAs) are also major predictors of future stroke. TIAs involve a small clot that stops blood flow to a part of the brain for a very short period of time. Blood flow resumes spontaneously, generally without permanent brain damage. One third of those who experience a TIA go on to suffer a major stroke within a year.

Although most TIAs last only seconds to minutes, the National Stroke Association advises calling 911.

“A TIA is a huge warning sign,” Burleigh Jacobs cautions. “You should get a full work-up. What was the source of that clot? Where did it come from?”

Even those who have few risk factors are not immune to stroke and should be aware of the symptoms, warns Burleigh Jacobs.

Just as each stroke victim is unique, so too is the rate and extent of recovery.

“Sometimes recovery means regaining past abilities, and sometimes it means learning new ways,” says Burleigh Jacobs.

“Your health when you go into a stroke is going to have a profound effect on your recovery. Someone who is 80, has diabetes and is an amputee is going to have a different experience than someone who is 50 and regularly hikes around Pinecrest.”

Regardless, she urges stroke survivors to never give up.

“Those who think they’re not going to get better are not going to get better,” she says. “And don’t think you can do it on your own. You’ve got to have support and advocacy.”

Advocates may be family, friends, health care providers, a support group or others (see resource list, page 40).

“Surround yourself with those who believe in you,” she urges. “And keep looking for resources. If your physical therapy benefits run out the first year, go back to your doctor the second year and ask them to order another round.”

Look for adaptive physical education classes at your community college. Check with the local hospital to see if it offers a stroke recovery program. Be on the lookout for new technologies ranging from video games and biofeedback devices to robotic exoskeletons.

Burleigh Jacobs says recovery can take years, and the process is different for each person.

“If you have five people who can’t walk, the treatment for each is different, based on their individual presentation,” she says. “When we talk about recovery, it is a continuum. It’s a very gradual path to relearning.”

Her background in neuroscience and neurophysiology, along with years of experience, guides her work. “I can watch how someone moves and from there I can identify the neural mechanisms that are in play and what we need to do to pull in more of the brain,” she explains.

Patients must work to regain use of their bodies one small, carefully planned step at a time, whether relearning how to use an arm or a leg, or to sit, stand or walk.

Different parts of the body recover at different rates. Some may improve quickly, while others can take many years. In her experience, arms and hands take longer to recover than the ability to walk. But in learning to walk again, patients must first be able to sit without support and to stand independently.

“Also, the type of ankle brace is really important,” she says.

She urges stroke survivors to identify what they can do. Do it every day and add a little bit more. “It’s little, little steps. Don’t give up.”

Instead of asking “When will I be normal?” Burleigh Jacobs advises survivors to simply ask, “What is my first goal?”

“Let the goals be small at first,” she adds. “Build on each small success.”

Anne Burleigh Jacobs’ book on stroke recovery, Highs, Lows and Plateaus: A Path to Recovery from Stroke, is available online. She also writes a blog with recovery tips and information at


Suspect a stroke? Think FAST

The National Stroke Association uses the acronym F.A.S.T. – for Face, Arm, Speech and Time – to teach the basic warning signs of stroke.

Face drooping Is the face drooping or numb? Ask the person to smile. Is the smile uneven?

Arm Is one arm weak or numb? Ask the person to lift both arms. Does one arm drift downward?

Speech Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence, like “The sky is blue.” Is the sentence repeated correctly?

Time to call 911 If someone shows any of these symptoms, even if the symptoms go away, call 911 immediately. Check the time so you’ll know when symptoms first appeared.

If stroke is suspected, call 911 immediately, advises Anne Burleigh Jacobs, a stroke recovery expert. “Don’t try to figure it out, don’t drive your loved one to the hospital. If you drive, they end up waiting in the emergency room.

“And use the word ‘stroke’ when you call 911. When you say stroke, bam, everything starts to happen. It sets off a whole chain of response.”

Read one woman’s survival story:

Copyright © 2016 Friends and Neighbors Magazine


Joan Jackson
By Joan Jackson December 15, 2016 23:35
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