from the devastating toll of stroke. The recent, sudden stroke deaths of Luke Perry and John Singleton, both of whom had ischemic strokes, and prompt, quality medical attention, are but two examples. Were there risk factors that might have been better controlled? Perhaps, perhaps not. But some strokes, predominately hemorrhagic, occur without known risk factors and without warning.
And where you live, or where you are stricken may make all the difference, a message brought home to me after performing My Stroke of Luck at the invitation of Stroke Awareness Oregon (SAO) in Bend.
We are lucky in the Bay Area. are relatively compact geographically, with high population density, easy access (not counting traffic) to sophisticated, integrated medical services and well established protocols, at least for initial stroke care. Many public service campaigns have educated us about F.A.S.T. (Facial droop, Arm weakness, Slurred Speech, Time is of the essence) the signs of stroke. (Though a more recent push is underway for B.E. F.A.S.T, adding Balance-check for loss, Eye-check for vision loss.) Our hospitals are well equipped with many specialists. Some communities even have mobile stroke units (mobile CT scanners in ambulances) to facilitate rapid diagnosis and treatment before arrival in hospital. have access to in and outpatient rehab services, and growing numbers of Physiatrists, Physical and Rehabilitative Medicine specialists to coordinate care.
And we have decades old non-profit stroke and brain recovery associations, which assist with referrals and long term support services. Our Larkspur Based Schurig Brain Injury Recovery Center’s mission: to improve the quality of life for survivors of acquired brain injury and their families and to raise community awareness about the causes and effects off these disabilities. Penninsula based Pacific Stroke Association’s Mission: To reduce the incidence of stroke through education and to help alleviate stroke’s devastating aftermath through programs that support survivors and caregivers. The East Bay based Aphasia Center of California provides high quality, cutting-edge services that enhance communication skills, quality of life, and overall well-being for those affected by aphasia. We have the Brain Aneurysm Foundation and The Aneurysm and AVM Foundation and The American Stroke Association (a branch of The American Heart Association). And those are only some of the non profits providing research, support and referrals for stroke and brain injury. (Telling, how great the need!).
(Yes, there has been progress since my stroke 14 years ago, but stroke survivors, even here, even now, must be proactive to find the myriad of resources available.)
Bend Oregon, an outdoor person’s paradise, is very different.
The largest city in East Oregon, on the other side of the Cascade mountains from the large population centers of Medford, Eugene and Portland, Bend, has grown from a mill town of 20,000 people in the 80’s to a diversifying city of 90-100,000. East OR is a huge geographic area pocked with one lane and high mountain roads containing about 2.5 million people. But the catchment area, which stretches nearly the length of the state, contains only 4 hospitals.
The economy is predominately agricultural, so the region is peopled with rugged farmers (greenhouse, nursery products, hay and wheat are main crops) and ranchers, many living more than 2 hours from any hospital. And as is the case with many people of the earth, they tend to be self-reliant and tough. Working through illnesses, they are loathe to seek medical care or accept hospitalization.
Enter Lawnae Hunter, a Bend transplant from the Bay Area, a force of nature, with a background in real estate, civic involvement and creating change. Arriving in Bend, she found limited opportunities for young people. Anyone wanting education beyond 2 year community college had to leave for Portland. So Hunter became instrumental in establishing a campus of Oregon State University in Bend, which now offers several Master’s programs in addition to 4 year degrees.
(Below: 2 faces of stroke survival: with Lawnae Hunter at The Tower Theater)
A fateful vacation on Turks and Caicos with her son and grandchildren became the impetus for her next civic intervention. As she slid from the water slide into the pool, her son took one look, and said, “Mom, you’ve had a stroke! I’m taking you to the hospital.”
Hunter said, “No. I’m fine.” (Heard that before?) She didn’t see the facial droop or hear the slurred words her son did. Eventually he prevailed, but only after she went back to her hotel to change out of her bathing suit!
The verdict at the hospital: “You need to get to the mainland. Nothing we can do here.” Hunter flew commercial with her son to Florida where she was immediately hospitalized in critical condition. She might not live through the night, her family was told. But she did. After several weeks neuro intensive care, and Hunter came to consciousness. Her first thought: get me to Stanford Hospital! Needless to say, not an easy endeavor, but, at last, with many strings pulled, and a $42,000 air ambulance transfer, she was admitted to the ICU at Stanford.
After discharge and 3 months inpatient rehabilitation at Santa Clara Valley, she was discharged to home with a right hemiplegia. But rehabilitation services in her adopted home of Bend were scant. In fact, NO coordinated stroke care was available, not for diagnosis, treatment or rehabilitation.
Hunter teamed with Dr. Stephen Goins, a neurologist and Medical Director of St. Charles Medical Center Stroke Program, to fill the void. And Stroke Awareness Oregon was born, a mere 16 months ago.
Building a ground up initiative requires dedication, laser focus and enlisting allies across many disciplines; the hospitals (in this case, the St. Charles Medical System administers the 4 area), physicians, EMT services, police and fire departments (all first responders, many of which, in small towns, are volunteer), occupational, speech and physical therapists, counseling services, financial advisors, health advocates, etc , etc. Hunter, her board and colleagues began at the beginning: with a think F-A-S-T: know the signs of stroke, education campaign. (Face drooping, Arm weakness, Speech difficulty, Time is Critical). After all, the first step in care is to recognize stroke. So Hunter’s team (which includes many retired physicians) fanned out to Rotary Meetings, Church meetings, clinics, fire departments, volunteer ambulance services all over the catchment area, speaking and handing out instructional materials in meeting after meeting, in town after town.
But that is only a beginning. Access to care is crucial, so SAO partnered with an air ambulance provider. SAO partnered with the St. Charles Health System, which purchased a new perfusion CT scanner to expedite diagnosis, and hired a new neurointensivist. For aftercare, SAO is recruiting a virtual army of specialized rehab providers (speech, occupational and physical therapists) interested in stroke and life advisory professionals (therapists, counsellors, financial advisors), with the aim to have providers local to every survivor.
My performance, packaged with a silent auction, was not only a fund raiser, but a part of their branding effort: to bring awareness of stroke and education about stroke and of the services being developed. And all signs are that it did just that.
“One lady said your performance was life changing. She is a stroke survivor and when you fell to the floor, everything you said are words she herself has uttered. She was so grateful to know that her feelings and emotions were not hers alone.”
SAO’s immediate most project is compiling and distributing a resource guide for stroke survivors and their families for East Oregon; none currently exists! (Though the American Stroke Association, a division of the American Heart Association, has a presence on the populated west side of OR - Bend people call it the rainy side- they have no presence on the east or sunny side.)
To educate the community on how to recognize stroke
To make F.A.S.T. a household safety word
To develop resources and support for stroke patients and their families
To increase awareness about stroke prevention.
It reminds me there was a time when mortality and morbidity from heart attacks was much greater than it is now. No one knew CPR outside of the hospital setting. Care for heart attacks began in the E.R. Then all first responders learned and performed CPR. But by the time first responders reached the victim, it was often too late. So began the push for universal CPR training. Now, when a person drops on the street, odds are, a CPR trained passerby will step in.
Though there is a special stigma to brain injury, which may explain why stroke awareness lags, but the tremendous medical advances in stroke care, including TPA, clot extraction and hematoma evacuation are fairly recent. There is still much more work to be done in terms of improving stroke awareness, treatment and aftercare. The effort may be Herculean, and may require visionaries spearheading the effort around the country, but change can and does happen.
Stroke can happen to anyone. Stroke is the #1 cause of disability in the U.S. Fast recognition and treatment can make all the difference.
Yes, modify the reducible risk factors (high blood pressure, smoking, high saturated fat diet, inactivity, high cholesterol, heart disease, vascular disease, atrial fibrillation) to the degree you can, but know stroke will always be an equal opportunity strike; none of is immune. Keep a solid medical insurance policy, consider an emergency medical evacuation policy for travel, and be grateful for every day.
But though we are all vulnerable, there are angels on this earth working to ensure we all have equal access to the services we’ll need.
Pictured below, Nora, a 22 year old graduate of Sonoma State University who, at 19, suffered an ischemic stroke, likely related to prior cardiac surgery for congenital mitral valve disease. Thanks to prompt recognition and rapid transport to a hospital where clot removal was performed, she has made a complete recovery. She's a featured AHA survivor.