When minutes matter: May is stroke awareness month

Stroke is the leading cause of adult disability in the United States.

According to the American Stroke Association, it is the fifth leading cause of death.

One in four people over 25 years of age will experience a stroke.

May is stroke awareness month, and awareness is imperative for stroke survivors and families alike.

More than 800,000 people have strokes nationwide each year. When talking about stroke, reference is primarily made to ischemic stroke due to “ischemia,” which is basically a disruption of vital blood flow to brain tissue. The sooner a stroke patient can be transported to the hospital, the faster the medical team can determine whether it is a stroke. If it is in fact a stroke, the doctors may either unblock the blood vessel or remove the clot causing the stroke.

Despite the grim statistics, 80% of strokes can be prevented. Being aware of what to watch for can save a life; B.E.F.A.S.T., which is Balance, Eye movement or vision, Face drooping, Arm or one-sided weakness, Speech that is garbled or not present and Time to call 911.

Awareness and prevention

Established in 2017, Stroke Awareness Oregon (SAO) began as a grassroots 501c3 in Central Oregon. It was established to minimize disability and death from stroke through awareness, education, prevention and recovery support. When an individual is admitted with a stroke to the hospital, the long road to recovery is a reality for which stroke survivors and their families are not prepared.

SAO is a nonprofit created by physicians, stroke survivors and community members and, according to their website, exists “to eliminate disability and death from stroke through awareness of causes, symptoms and treatment, and through recovery support.”

Stroke Awareness Oregon is making a difference in stroke outcomes and recovery through four main goals. These include educating about stroke causes, prevention and treatment options; making B.E.F.A.S.T. a household safety word; supporting the stroke survivors and their families; and doing this work in partnership with the medical community, businesses and the community.

Carol Stiles is the interim executive director for SAO.

“We really have two very specific arms of our work,” she said. “The first is just simply awareness of what stroke is, what causes it, some things that can be done to prevent it and how to recognize if someone is having a stroke and get that person the medical treatment as soon as possible to help diminish the death and disability.”

Stiles went on to say, “Stroke is a family affair. Stroke is a very personal experience, and it affects people in very different ways. It changes relationships and economics – it just changes so many things. The coolest thing that I have learned is how resilient people can be — especially given some support, some understanding and some resources.”

The need for support

Tony Conte supports his wife, Nellie, who had a stroke eight months ago. They attend in-person stroke awareness support groups hosted by SAO (Stroke Warriors).

“I didn’t realize how impactful this was going to be on our lives,” stressed Conte. “My wife has always been an extremely active, outgoing individual.”

He added that his wife was a low risk for stroke, and she had good health before her stroke. The doctors are still trying to find out how and why she had her stroke, and they have changed their diet and lifestyle.

“Her nature has always been very active in the community — from daylight to dark, she goes. This is very hard to become more dependent,” added Conte.

He added that they do additional therapy work outside of physical therapy.

“The only thing I know is to hit it hard and keep swinging and get back what we can get back. There has been steady increase, and we are just at the eighth month mark.”

Conte emphasized that although Nellie’s doctors said the biggest gains were by the six-month mark, he continues to see big gains and does not believe the prior is a good message.

“My wife rode her own Harley Davidson the week before her stroke. She is an outdoors woman, she is hunter and a fisherwoman, and she had her own nonprofit foundation.”

Conte said that no two strokes are alike, and Nellie struggles with speech as she had a left-sided stroke. He said they go to speech therapy, and they attend the stroke survivor groups regularly.

Jim Patterson suffered a stroke on July 11, 2020, at the age of 58. He was in Reedsport, Oregon, playing in a golf tournament, and after getting acute medical care, he was transported via helicopter to Peace Health in Eugene. The medical team at the stroke ward performed a thrombectomy, and he was then transported to ICU in Salem. He was paralyzed on one side and blind in his right eye.

“During a part of my therapy, I was introduced to Lawnae Hunter, who was one of the founders of Stroke Awareness Oregon. At the time, I knew it was a small, nonprofit that had just gotten its sea legs,” Patterson said.

He was previously the chief athletics fundraiser at Oregon State University, so he had fundraising experience. He volunteered his time to help raise money for SAO to advance their mission. He is now the president of the board of directors.

“One of the things that I found as a survivor from a stroke was I was very curious to know what my purpose in life was going to be moving forward. There has been no greater joy in my life than being able to be a part of something that helps other people,” Patterson said with conviction.

He stressed that education and awareness about stroke is vitally important, because 80% of strokes can be prevented.

“We need the medical community to understand as part of stroke recovery, when people are discharged from a stroke center, there needs to be more available to people in terms of information about what is next,” Patterson added. “Nobody tells us what we are going to be facing out there in the real world. If you have had a stroke, you are going to be trying to function through life with an invisible disability.”

Patterson indicated that he had mental health challenges and battled depression early on after stroke.

“In my case, I was mourning the loss of my former self. I was grieving as if I was grieving the death of a family member. It is really important that we do this work and draw more attention to people’s reality. This is what we are challenged by on a daily basis, and certain changes need to be made in how this particular medical crisis is viewed.”

He added that there is a lack of awareness in the workplace on what it is required for someone to come back into the workforce after a stroke.

“If you don’t understand that a stroke is a brain attack, you are not going to extend the appropriate level of grace to people who are trying to fight back that is required.”

Programs and outreaches

One of the recent outreaches and programs of SAO that helps those who are beginning their road to recovery is Peer-To-Peer (P2P), which is a one-on-one program developed by SAO to help people with a stroke learn about stroke and recovery.

Leading this new program is Steve Van Houten, a retired vocational rehabilitation counselor who had a stroke in 2019. Van Houten was hospitalized and has been working to recover ever since his stroke. He came on the SAO volunteer board of directors in 2020 and is managing the development of the P2P program.

“A person who’s had a stroke comes alongside a person with a stroke to listen and share their experience,” commented Van Houten. “This is personal, not professional, and designed to help the peer feel heard. If the peer wishes, the supporter helps the peer plan their own recovery and works to help them accomplish their goals.”

Van Houten works with St. Charles Health System in their stroke ward to help those who have recently suffered a stroke. The SAO team works alongside local and state hospitals, community leaders and businesses to further provide stroke education, support and resources. SAO is making a difference in stroke outcomes and recovery through the education of B.E.F.A.S.T.

Event with Randy and Mary Travis

Stroke Awareness Oregon is presenting an uplifting evening with country music and Grammy Award winner Randy Travis and his wife, Mary, on Monday, May 13, at Westside Church in Bend. The evening event, which will take place from 6-10 p.m., is also presented by Hayden Homes.

After Randy's life-changing stroke in 2013, the couple will share their powerful story of loss, hope, faith and resilience to raise funds for Stroke Awareness Oregon.

“It’s kind of a big deal that he and his wife will be coming to Bend for our benefit, to help us get out the word about stroke and hope and resilience,” commented Stiles.

While this is not a Randy Travis concert, the evening will begin with opening music from local rock band Soul Benders led by Steve Boatwright, who has toured with renowned acts like Santana, Stevie Nicks and Chuck Berry. A special highlight of the evening will be a live auction of a Breedlove guitar autographed by Randy and Mary Travis.

To buy tickets for the event, go to strokeawarenessoregon.networkforgood.com/events/68587-an-evening-with-randy-mary-travis.