In May 2009, software developer David Karchem was driving near his home in Southern California when his left arm began to feel weak and numb. Struggling to stay conscious, he managed to get his car to the side of the road and call 911.
"I didn't know it at the time, but I was having a right-brain ischemic stroke," says Karchem. He was transported to a local hospital, where he was given a dose of tissue plasminogen activator (tPA), a drug that dissolves blood clots and improves blood flow to the brain when delivered within three to four and a half hours of a stroke. Then, it was decided that he should be transferred to a hospital farther away that had more experience with stroke patients.
There, an MRI scan revealed three blood clots in his brain, which doctors determined required an additional dose of tPA followed by surgery to remove the clots. (Since that time, many states, including California, have passed laws that require ambulances to take stroke patients directly to the nearest primary stroke center, rather than just the closest emergency department.)
The delay in more aggressive treatment may have cost Karchem significantly. After the stroke, the 62-year-old computer engineer was totally paralyzed on his left side. He had difficulty recognizing objects, problems with focus and depth perception, trouble swallowing, and impaired memory. That was the start of a long journey back to independence that would involve rehabilitation therapy in the hospital, at a rehabilitation facility, and then at home. It's a journey he's still on.
Rethinking Recovery
Many of the tools and techniques that rehabilitation programs use to help stroke survivors regain their independence have been available for decades. But today's rehabilitation teams have much higher expectations for what their patients can achieve and will work longer to help them achieve it. In the past, a patient going from a bed to a chair was deemed a good recovery.
"Now we know the brain can remodel itself. But we have to stimulate that recovery," says Carolee Winstein, PhD, professor of biokinesiology and physical therapy at the University of Southern California and co-author of new guidelines on stroke rehabilitation and recovery issued by the American Heart Association (AHA) and American Stroke Association (ASA) in May. The remodeling, Dr. Winstein says, is part of the process of neuroplasticity, the ability of the brain and other parts of the central nervous system to "rewire" and redirect functions that were once the job of damaged areas over to different, healthy areas.
It's true that recovery also depends on how quickly patients were treated and how much damage was done to the brain. But experts also agree that earlier and more intensive rehabilitation increases the odds of recovering more function. The more patients practice their therapy regimens, the stronger and smoother their new brain pathways will be.
This advice from stroke survivors and other experts may help ensure the best recovery possible for you or a family member.
Start Rehab Early
"As early as the first day after you've been admitted to the hospital with a stroke, you will be seen by the physical therapy team," says Nicholas Osteraas, MD, assistant professor of neurology and a stroke specialist at Rush University Medical Center in Chicago. "We need to plan the rehabilitation process right away and get patients started as soon as is medically safe."
In Karchem's case, he began with stretching exercises for his arms and legs, along with relearning skills he had lost—everything from coordinating leg movements used for walking to swallowing, eating, drinking, and using the toilet.
Because of a clot discovered behind his right knee six days after his stroke, which had to be surgically removed, Karchem's right side—the side unaffected by the stroke—was initially too weak to support any weight. For nearly a month, he worked to regain the ability to walk. From leg stretches, he progressed to standing beside his bed with support, to walking using a standing table support, and then to walking with parallel bars. By mid-June, he was able to walk using a four-pronged cane.
Karchem also learned new ways of doing regular activities to compensate for persistent disabilities. He was taught to use walls, door frames, or window edges—any vertical line—to orient himself in space in order to walk upright. He also learned to find lines or "target" objects to help him follow a straight line while walking (and eventually driving) so he didn't veer to the left. While at home, he practiced doing multiple tasks simultaneously, like carrying a towel while walking from room to room.
For some stroke survivors, therapy involves restraining an unaffected limb to encourage the movement and use of the affected limb. It may also include range of motion therapy, which helps reduce muscle tension and improve how far and how smoothly patients can move affected parts of the body. If the impairment on one side is too severe, a person may have to learn how to use the opposite hand to write and dress.
Address Your Emotions
"Before my stroke, I was very independent," says Karchem. "Most of us never plan what we'll do if we lose that independence." For months after his stroke, Karchem struggled with his identity and his place in the world. "I was drifting; too old to expect miracles, too young to give up on my bucket list, but unsure what my future was."
Even people who have had a relatively mild stroke find themselves grieving their pre-stroke life and abilities. To compound matters, a stroke's effect on areas of the brain that regulate emotions often triggers depression, anxiety, and a phenomenon called pseudobulbar affect—involuntary and inappropriate bouts of laughter, crying, or anger. People may even experience all three.
Left untreated, post-stroke depression can lead to social isolation, pessimism about recovery, less energy, and an apathy that can make patients reluctant to participate in therapy, says Dr. Osteraas. "These [negative emotions] can get in the way of recovery, so it's very important that a rehabilitation program address the psychological aspects of stroke as well as the physical."
Seek Counseling
Identifying and admitting to having difficult emotions is the first step. The second is to reach out to professional therapists for counseling and consider medication, if necessary. Both have been shown to help with the emotional effects of stroke. And some antidepressants have even been shown to help stroke survivors recover motor skills. In fact, in a 2011 study of the antidepressant fluoxetine (Prozac) published in Lancet Neurology, stroke survivors who complemented physical therapy with fluoxetine significantly improved their motor skills after three months.
Thanks to talk therapy sessions, Karchem could envision a future and imagine what was possible. "We talked about walking, reading, using computers, accessing the Internet, learning new ideas, driving my car. These meant [regaining my] humanity and independence," he says. To keep his mind busy and stay positive during the early days of his recovery, he focused on researching his condition and what he could do to regain the most function possible.
Embrace Exercise
Incorporating physical activity can help with emotional recovery. "It's one of the best 'drugs' for depression, as many studies show," says Dr. Winstein. "Our guidelines recommend a customized exercise program for each individual, and that is for psychological as well as physical benefits."
Karchem adapted the exercise regimen he followed while in the rehabilitation facility for use at home. "I do range of motion and stretching exercises, leg lifts and ankle stretches, and knee flexion and extension," he says. "As I've recovered more movement in my left arm, I've started doing weight-bearing exercises with that arm and wrist." He also walks regularly.
Research Your Rehab
Most rehabilitation takes place after discharge—the average stay for a stroke patient in the acute hospital is just four days. People who've had a mild stroke or recover very quickly may be sent home to attend an out-patient facility, where they spend several hours a day in therapy, or receive therapy at home.
Survivors of a more moderate or severe stroke may be discharged to an inpatient facility, where intensive rehabilitation care is provided under a doctor's supervision. These facilities are required to provide at least three hours of therapy a day, including speech and language therapy, physical therapy, and occupational therapy, for a minimum of five days a week. Karchem spent six weeks in a rehabilitation unit at Northridge Hospital in Los Angeles. After being discharged, he continued his rehabilitation at an outpatient facility.
Those recovering from a devastating stroke or whose health or overall function was impaired prior to the stroke may be transferred to a skilled nursing facility or a long-term acute care hospital.
To find the best stroke rehabilitation facility, download "Choosing a High-Quality Medical Rehabilitation Program," a guide developed by the National Rehabilitation Hospital and Boston University. It has checklists, questions to ask an admissions counselor, a glossary of terms, insurance information, and more. Or search the Commission on Accreditation of Rehabilitation Facilities for an accredited rehabilitation provider. Another option is to check the US News and World Report rankings of the best adult rehabilitation hospitals.
Tailor Your Therapy
There's no consensus about the best type of rehabilitation or whether certain exercises are better than others, partly because few major studies have been conducted on which types of rehabilitation, and how much or how often, are most effective over time.
A potential front-runner is something called progressive task-related training, which focuses on functional skills. "If you want to improve the use of your arm and hand, for example, you should practice grasping finger food and bringing it to your mouth, rather than just raising your arm in the air," says Bruce Dobkin, MD, FAAN, professor of neurology at the David Geffen School of Medicine at the University of California, Los Angeles (UCLA), medical director of the UCLA Neurologic Rehabilitation and Research Program, and co-director of the UCLA Stroke Center.
A study led by Dr. Winstein, published in the Journal of the American Medical Association in February 2016, found that a task-oriented therapy program for the hand and arm called the Accelerated Skill Acquisition Program—which involves exercises such as the finger food exercise Dr. Dobkin describes—didn't lead to better motor outcomes for stroke survivors than standard occupational therapy, which doesn't focus specifically on functional tasks. However, the task-oriented program did accelerate patients' performance in other areas, including hand strength, mobility, physical function, and participation, as measured by the Stroke Impact Scale questionnaire. The task-oriented therapy group also did better in other areas, including self-efficacy (believing you can accomplish a task), perceived health, reintegration into the community, and quality of life outcomes.
Break the Fall
Up to 70 percent of people who have had a stroke will experience a fall within six months of being discharged from the hospital or rehabilitation facility. To address this, new AHA/ASA guidelines recommend that exercises to prevent a fall, including balance training, should be an important part of stroke rehabilitation. When patients are discharged, their care teams should help them and their families modify their homes to minimize falls, with simple changes such as adding grab bars to the shower and getting rid of slipping hazards like throw rugs.
Plan for Post-rehabilitation
Even when the formal rehabilitation program is over—usually Medicare or private insurance coverage lasts no more than a year, there is still more to do. "While you are in recovery, you need to be involved in actively learning the exercises and the different types of therapies provided by various services, so you can adapt them and do them on your own," says Dr. Osteraas.
"An essential part of recovery is having your therapist guide your home practice," says Dr. Dobkin. "He or she should be giving you and your family task-based rehabilitation exercises for you to do at home based on goals you want to accomplish, like turning the key in the lock or going up and down a certain number of steps, as well as guidance on how to exercise safely in general. You can practice these intermittently throughout the day, even in intervals of just five or 10 minutes."
Today, Karchem, now 69, is driving again. He can hold his grandchildren on his lap and read to them. He has earned a master's degree in assistive technology and human services and engineering from California State University-Northridge and works as a project manager for the division of biokinesiology and physical therapy at the University of Southern California. "I am able to hug people with both arms," he says. "I am more balanced and have greater endurance when walking." He still has some paralysis in his left hand, wrist, and fingers, but in January 2016—nearly seven years after his stroke—he started to get more active control over that arm and its movements.
"You have to take charge of your own rehabilitation," Karchem says. "Don't give up, because you never know what will happen in the future. With new technology being developed and new therapies on the horizon, the way I am today is not how I am going to be in a few years. I try everything with the philosophy that if it helps stimulate any part of my body or brain, then it's worth trying."
Karchem has also volunteered for studies, as well as participated in six weeks of training with an occupational therapy robot—an electronic brace that detects signals in the biceps and triceps muscles as the person tries to move his or her arm and helps the person complete the movement—at the Rancho Los Amigos Rehabilitation Hospital in Downey, CA. He also served as a volunteer patient in the physical therapy training programs at both the University of Southern California and California State University-Northridge. "The key is getting your brain focused on different things to help it get working again," he says.
Time Is Brain
The sooner you get to a hospital, the better your prospects are for recovery. Most states have legislation requiring ambulances to route suspected stroke patients to hospitals deemed stroke-ready, says Sarah Song, MD, MPH, a stroke specialist at Rush University in Chicago. "That's why it's so important to call 911, so the ambulance can route you to the right hospital. Emergency responders can also pre-notify hospitals that a possible stroke patient is on the way, allowing the stroke team to meet the patient at the emergency department bay."
If you think someone might be having a stroke, use the FAST acronym to identify the warning signs:
F: FACE.
Ask the person to smile. (If it's you, look in a mirror.) Is one side of the face drooping?
A: Arms.
Ask the person to raise both arms. Does one arm drift downward? Does one arm feel numb compared to the other? (You can also do this for the legs.)
S: Speech.
Ask the person to repeat a simple phrase, like "It's nice to meet you." Is her speech slurred or garbled?
T: Time.
A "yes" to any of these questions means you should call 911 immediately.
3 Ways to Reduce Your Risk of Stroke
Strokes can occur at any age and are the leading cause of serious long-term disability in the United States. Yet 80 percent of them are preventable, according to the National Stroke Association. Certain factors can increase your risk for a stroke, but there is plenty you can do to reduce that risk. Managing these risk factors is even more important if you've already had a stroke, since one in every four people who have had a stroke will experience a second one in his or her lifetime.
- Identify and treat atrial fibrillation. About 15 percent of people who have strokes also have this often "silent" heart arrhythmia. The risk for atrial fibrillation, or AFib, also goes up with advancing age. Two-thirds of strokes related to AFib can be prevented with the help of medications or radiofrequency ablation, a minimally invasive procedure to control the heart rate.
- Manage medical conditions. High blood pressure, high cholesterol, circulation problems, and diabetes can all increase your risk of a stroke. Help control some of these conditions and reduce your stroke risk by following up with your doctor at least once a year, eating a healthy, balanced diet, getting regular physical activity (ideally, about 150 minutes of moderate-intensity exercise every week), and limiting your alcohol intake. It's also essential to take medications—such as statins for high blood pressure, exactly as your doctor has prescribed them—to control these conditions.
- Stop smoking. Smoking doubles your risk of stroke compared to that of a nonsmoker. If you quit, the repair process starts quickly: By 18 months after your last cigarette, the risk of stroke goes down to nearly that of a nonsmoker.
It's a Family Affair
Family support after a stroke is crucial. Here's how to lend a hand.
Multiple studies have found that support from friends and family can make a big difference in how well a person recovers after a stroke.
David Karchem, 69, a computer engineer in Southern California who had a stroke seven years ago, knows that well. "My family really supports my goals of seeking rehabilitation therapies and assistive technologies to help me resume as much of my life as possible," he says. They also act as "backstops" for things he might forget, such as what clothes to wear for specific activities and staying hydrated.
To provide the best support possible, keep this advice in mind.
- GET EDUCATED. Read Navigating the Complexities of Stroke (Oxford University Press, 2013) by Louis R. Caplan, MD, FAAN, from the American Academy of Neurology's Neurology Now Books series; Living with Stroke: A Guide for Families (Healthsouth Press, 2010) by Richard Senelick, MD; or Stroke and the Family: A New Guide (Harvard University Press, 2004) by Joel Stein, MD. You can also call the National Stroke Association's stroke helpline at 800-STROKES (787-6537) for more resources.
- ASSEMBLE A TEAM. Before your loved one returns home, gather a team of people willing to help with everything from lawn care and housecleaning to child care and transportation to and from appointments.
- INVESTIGATE FINANCIAL AID. Look for financial assistance options and free support programs. Visit cms.gov for information on Medicare and Medicaid and socialsecurity.gov for information on Social Security disability insurance. You may find local resources from your state or county department of aging, senior resource centers, faith communities, or veterans groups.
- ENCOURAGE AUTONOMY. Seek input from your loved one about everything from meal choices to exercise options. "The person needs to be able to voice his choice. People are much more engaged in recovery when their opinion matters," says Carolee Winstein, PhD, professor of biokinesiology and physical therapy at the University of Southern California. "Ask them what task they want to work on and how much they think they can do. Often they'll be able to do more than they expect."
- SUPPORT YOURSELF. Don't neglect your own physical and emotional health. Many hospitals now have stroke support groups, family stroke networks, and other innovative programs to make sure patients and their families feel supported and educated, says Sarah Song, MD, MPH, a stroke specialist at Rush University in Chicago. The American Heart Association/American Stroke Association also has excellent resources.
Checkout Checklist
Bring this list of recommendations from the American Heart Association/American Stroke Association to your next visit with your neurologist so you can discuss whether these services are available or offered in your area.
- Care from a team directed by physicians and/or physiatrists trained in stroke neurology
- Care in an inpatient rehabilitation facility rather than a skilled nursing facility, whenever possible
- A formal fall prevention program while in the hospital
- Repetitive, mobility-focused task training for functional impairments
- A functional assessment by an expert in rehabilitation focused on where you'll live after discharge
- A balance training program
- Counseling on preventing secondary strokes
- Assessments and interventions for depression
- Speech and language therapy for aphasia, if applicable
