Monday, August 22, 2016

Developing Resilience: A Mother's Perspective

The following article is taken from an article posted on an American Heart Association website. I encourage you to visit their site,, and the site where this article written by Carol Dow Richards was first published. 

Carol Dow Richards

“Your child has had a stroke.” Those words are hard to fathom — and just the beginning of a long road to recovery. It requires entire families to adjust to many challenges — and not just those faced by their child.

In 1995 when my son David had a stroke at 10, my first thought was one of denial. Surely, we’d be out of the hospital in no time and he would be back to normal. Didn’t modern-day doctors “fix” these things?

I learned, as time passed, that we were not to be out of the hospital for nearly three months. And David never returned to the “old David.” We now had the “new David” — a 10-year-old who could no longer read or speak, as he now had significant aphasia. He was in a wheelchair. His arm was limp.

He’d been in the gifted program — and now moved to special education. His heart — and mine — had been broken. Hopes and dreams changed on that dreadful day.

That was nearly 20 years ago. David navigated the course of puberty, depression, school challenges. Our family learned to manage on one income. His brother had to grow up fast — as I was rarely home for nearly three years — as we navigated David through intense rehabilitation. In some ways my husband lost his wife, as I was 100 percent a mom on a mission: Help my son. David went to therapy for the next 15 years.

Today, David and I volunteer at a nonprofit we started, The Aphasia Recovery Connection. We connect families dealing with the devastation of aphasia. We also have several Facebook group sites, including one just for kids with stroke and aphasia, ARC Kids with Aphasia (0-18), where we connect families, offer tips, and help others navigate the journey.
As I look back over those difficult years, I think there are three main pieces of advice I would offer parents.

First, learn the rights of students in the educational system. Students are afforded a free and appropriate public education in the United States. What was appropriate prestroke may not be now. David’s aphasia was so significant that by high school, he needed to attend a boarding school with significant therapy services for his aphasia. Had I not known the laws, I would not have known how to advocate for my son. Parents need to advocate for their child.

David’s recovery is a testament to his mother’s dedication. Today, both Carol and David are devoted advocates for stroke awareness.
Second, maintaining self-esteem and hope is so important. Kids at school can be cruel — and it is easy for these kids to fall into depression and loneliness. Every night as David fell asleep, I would whisper in his ear, “I am getting stronger, I am improving. I will improve day by day. I’m still smart.” He needed to believe that. I often felt that maintaining David’s self esteem was really my biggest job.

Lastly, take care of yourself. I remember one day at the hospital looking into a mirror. Who was that woman? I thought as I realized I had stopped taking care of me. I was pale and lifeless. It was at that moment that I reached into my purse and added some color to my lips — and tried so desperately to put a bounce back into my step. This challenges you to your core — but you have to believe in resiliency. And believe that yes, you CAN do this.

Deep inside each of us, we are resilient. Children are resilient. Parents are resilient. And we can indeed adjust to the new “normal.” It may be painful, horrific at times, but each day, we need to lead. With strength. And courage. And set the example for our children. No matter what life brings.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.

Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, August 14, 2016

Part 2 - History of Stroke

The following is a re-post from the stroknet newsletter The original post can be found on

There are several links to more information included in this article. If you click on any words in red or blue they will take you to more detail.

Written by Rachel Nall, RN, BSN, CCRN
Medically Reviewed by University of Illinois-Chicago, College of Medicine on March 21, 2016
Advancements in Stroke Treatments
TPA is the preferred treatment method for ischemic strokes. However, an emerging treatment for these types of strokes is the Mechanical Embolus Removal in Cerebral Ischemia (MERCI) retriever. This device can physically remove a blood clot in someone having an ischemic stroke. Since its first use in 2001, the MERCI retriever has treated approximately 10,000 people. However, the drawback is that many surgeons still need to be trained in its use, and hospitals need to purchase the equipment, which can be very expensive. While TPA is still the most commonly used treatment for ischemic strokes, the MERCI retriever may increase in popularity as more surgeons become trained in its use.

Hemorrhagic stroke treatments have also come a long way. If the effects of a hemorrhagic stroke affect a large portion of the brain, doctors may recommend surgery in an attempt to reduce long-term damage and relieve pressure on the brain. Surgical treatments for hemorrhagic stroke include: 

Surgical clipping: This operation involves placing a clip to the base of the area causing the bleeding. The clip stops the blood flow and helps prevent the area from bleeding again. 

Coiling: This procedure involves guiding a wire through the groin and up to the brain while inserting small coils to fill areas of weakness and bleeding. This can potentially stop any bleeding. 

Surgical removal: If the area of bleeding can’t be repaired through other methods, a surgeon may move a small section of the damaged area. However, this surgery is often a last resort because it is considered very high risk and can’t be performed on many areas of the brain.

Other treatments may be required, depending on the location and severity of the bleeding.

Advancements in Stroke Prevention
While stroke continues to be a leading cause of disability, approximately 80 percent of strokes are preventable. Thanks to recent research and advancements in treatment, doctors can now recommend prevention strategies for those who are at risk of having a stroke. Known risk factors for stroke include: 

being over age 75

having atrial fibrillation
having congestive heart failure
having diabetes
having high blood pressure
having a history of stroke or transient ischemic attack

People who have these risk factors should talk to their doctor about how they can lower their risk for stroke. Doctors often recommend taking the following preventive measures:
quitting smoking
taking anticoagulant medications to prevent blood clotting
taking medications to control high blood pressure or diabetes
eating a healthy diet low in sodium and rich in fruits and vegetables
exercising three to four days a week for at least 40 minutes a day

While a stroke can’t always be prevented, taking these steps can help to minimize your risk as much as possible.

The Takeaway
A stroke is a life-threatening medical event that can cause lasting brain damage and long-term disabilities. Seeking treatment immediately can increase the likelihood that you or a loved one receive one of the innovative treatments used to treat stroke and minimize complications.

Sunday, August 7, 2016

Part 1 - History of Stroke

The following is a re-post from the stroknet newsletter The original post can be found on

Written by Rachel Nall, RN, BSN, CCRN
Medically Reviewed by University of Illinois-Chicago, College of Medicine on March 21, 2016
A stroke can be a devastating medical occurrence. It happens when blood flow to a portion the brain is impaired due to a blood clot or broken blood vessel. Much like a heart attack, the lack of oxygen-rich blood can lead to tissue death. When brain cells begin to die as a result of the reduced blood flow, symptoms occur in the parts of the body that those brain cells control. These symptoms can include sudden weakness, paralysis, and numbness of the face or limbs. As a result, people who experience a stroke may have difficulty thinking, moving, and even breathing.

Though doctors now know the causes and implications of a stroke, the condition hasn’t always been well-understood. Hippocrates, the “father of medicine,” first recognized stroke more than 2,400 years ago. He called the condition apoplexy, which is a Greek term that stands for “struck down by violence.” While the name described the sudden changes that can occur with a stroke, it didn’t necessarily convey what is actually happening in the brain.

Centuries later, in the 1600s, a doctor named Jacob Wepfer discovered that something disrupted the blood supply in the brains of people who died from apoplexy. In some of these cases, there was massive bleeding into the brain. In others, the arteries were blocked.

In the decades that followed, medical science continued to make advances concerning the causes, symptoms, and treatment of apoplexy. One result of these advancements was the division of apoplexy into categories based on the cause of the condition. After this, apoplexy became known by such terms as stroke and cerebral vascular accident (CVA).

Today, doctors know that two types of stroke exist: an ischemic and a hemorrhagic stroke. An ischemic stroke, which is more common, occurs when a blood clot lodges in the brain. This blocks blood flow to various areas of the brain. A hemorrhagic stroke, on the other hand, happens when an artery in the brain breaks open. This causes blood to accumulate in the brain. The severity of the stroke is often related to the location in the brain and to the number of brain cells affected.

According to the National Stroke Association, stroke is the 5th-leading cause of death in the United States. However, an estimated 7 million people in America have survived a stroke. Thanks to advancements in treatment methods, millions of people who’ve experienced a stroke can now live with fewer complications.
History of Stroke Treatments

History of Stroke Treatments
One of the earliest known stroke treatments occurred in the 1800s, when surgeons began performing surgery on the carotid arteries. These are the arteries that supply much of the blood flow to the brain. Clots that develop in the carotid arteries are often responsible for causing a stroke. Surgeons began operating on the carotid arteries to reduce cholesterol buildup and remove blockages that could then lead to a stroke. The first documented carotid artery surgery in the United States was in 1807. Dr. Amos Twitchell performed the surgery in New Hampshire. Today, the procedure is known as a carotid endarterectomy.

While carotid artery surgeries certainly helped to prevent stroke, there were few treatments available to actually treat a stroke and reduce its effects. Most treatments were more focused on helping people manage any difficulties after a stroke, such as speech impairments, eating problems, or lasting weakness on one side of the body. It wasn’t until 1996 that a more effective treatment was implemented. During that year, the United States Food & Drug Administration (FDA) approved the use of tissue plasminogen activator (TPA), a medication that breaks up the blood clots that cause ischemic strokes.

Though TPA can be effective in treating ischemic strokes, it must be administered within 4.5 hours after symptoms begin. As a result, receiving prompt medical attention for a stroke is vital to reducing and reversing its symptoms. If someone you know is experiencing symptoms of a stroke, such as sudden confusion and weakness or numbness on one side of the body, take them to the hospital or call 911 immediately.
Next week I will continue this article in Part 2 with advancements in treatment and prevention.

Sunday, July 31, 2016

Leslie's Story

Leslie Houston, a stroke survivor, wrote her personal story for the American Heart Association. She feels her story is important to pass on and so do I. You can find other stories like this if you visit the American Heart Association/American Stroke Association sites. There are many stories, and informative articles there about stroke and much about heart attackes and other like issues. Please visit these sites:                                       

Here is her story.
My name is Leslie Houston, I am a stroke survivor. At the time my stroke happened I was on a 9 hour drive. I was going from Garden City, KS to Springfield, MO on my way to see John, a friend of mine. A week earlier we were going to move me to live with him. Halfway around El Dorado, KS, I got a really bad headache. I was about a mile away from El Dorado and have been on this road so many times I knew exactly where I was. This also took me 2 years to remember that I almost drove my car off the road. So I stopped at the park and took 3 aspirin and laid on the ground thinking as soon as the aspirin kicks in, I will hit the road. It was about 1 PM in the afternoon, Oct, 2, 2008. I couldn't do anything. I remember waving at a little girl. I spent the night in my car.

The next morning I drove 5 hours. For 2 to 2 1/2 hours I had major visions. I believe the Lord drove me for awhile. There was one area where the only thing I could see is a hole showing the center of the road. Visions mellowed out by the time I got to busier roads. When I made it to John's, he was at work for a while and was mad at me. "Where have you been?" he asked. I said "I am sick, I am sick and I really have a bad head ache." He went and got me some medication and 1 1/2 hours later I told John, "somethings wrong." John took me to Cox Hospital in Springfield, MO. I was there for a week and they sent me to a Hospital in KS for 4 days and wanted to send me to Wy. I remember saying "no, I wanted to be with John." I am very lucky my mother taught me to get educated and I knew to exercise. I went back to Garden City, KS and told my Doc I need to go to school.

I explained to my doctor that I had an extreme head ache for many months. I couldn't understand words or talk correctly. As I learned more about stroke victims I saw that we are all dealing with different affects of the condition. I can use my legs and hands while others have lost their ability to do so. Most people don't know I am a Stroke person. The size of the Stroke in my brain is, 7.5 3.6 2.5 cm. I am trying to get Doctors to send Stroke people right out the gate to school or speech classes. Please it is extremely important for people like me. I am now going to Ivinson Memorial Hospital, Speech Language Pathologist, Shelley Barton, M.S., CCC-SLP, I have been seeing her for over 2 years. Now I also see Shelly Coulter, M.S., CCC-SLP, 2 Shelley's. Anyway, Doctors please do this for people. Most of us can't talk, therefore, we are not acknowledged.

Thank you for the time to read this, it is important.

Thank you,
American Heart Association

Sunday, July 17, 2016

Get With The Guidelines-Stroke

I want to thank Monica VestWheeler for posting here on our blog this past month her articles and pictures of our recent camps. She is a great photographer with the ability to get that photo that captures the emotion of that exact moment. THANK YOU MONICA!!!
Stroke patients’ outcomes better in hospitals using guidelines-based program


Stroke patients treated at hospitals participating in a guidelines-based program are more likely to be discharged home and less likely to die within 30 days and one year, according to a new study.

The study, published in the American Heart Association journal Stroke, showed that patients who received treatment at hospitals participating in Get With The Guidelines-Stroke (click on this link for more details) were 10 percent more likely than those in non-participating hospitals to be discharged home, rather than to a rehabilitation center or other facility.

Furthermore, 30 days and one year after discharge, patients from participating hospitals were 7 percent to 8 percent less likely to have died.

The findings mean that participating hospitals would discharge 12 more stroke patients home for every 1,000 patients than non-participating hospitals, and 34 fewer patients would have died within one year.

Get With The Guidelines-Stroke, established by the AHA/American Stroke Association in 2003, helps hospitals provide stroke patients with the latest, most effective treatment for stroke. More than 1,600 hospitals have registered to receive patient management toolkits, access to workshops, decision support and many other resources.

“We know that in the past the Get With The Guidelines-Stroke program was associated with improved processes of care, such as appropriate medications and other interventions to prevent complications,” said Sarah Song, M.D., lead author of the study and an assistant professor in neurology at Rush University Medical Center in Chicago. “Now we know that this improved care translates into improved clinical outcomes.”

For the study, researchers analyzed data from the Centers for Medicare & Medicaid Service for 366 hospitals participating in Get With The Guidelines-Stroke and 366 non-participating hospitals. About half of the 173,985 Medicare stroke patients in the study received treatment at hospitals participating in the program.

A stroke is a medical emergency that occurs when a blood vessel bursts or is blocked by fatty substances or a blood clot, interrupting blood flow to the brain. Without immediate treatment, cells in the brain begin to die, resulting in brain damage, paralysis or even death.

Stroke is the fifth-leading cause of death in the United States, killing someone about every four minutes. The F.A.S.T. acronym is used to help people recall key symptoms of a stroke: face drooping, arm weakness, speech difficulty, time to call 911.

Monday, July 11, 2016

Lots of ooohs and aaahs at Ohio camp

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

The beauty of Stroke Camp is that every weekend is different, and that's why it's a healthy addiction for our staff and volunteers.

It's all because of who is there, and why each camp is a once-in-a-lifetime experience. Our founder and executive director Marylee Nunley has always said that whoever attends a camp is there for a reason … making unique connections, learning new life lessons and so much more. I like to think it's also taking life to new heights.

Our second annual camp in Ohio was no different. Thanks to our sponsors, OhioHealth and the OhioHealth Rehabilitation Hospital, we had a most amazing June weekend at the Salt Fork Lodge & Conference Center in Lore City.

I learned so much from these stroke survivors and their caregivers this weekend, as I do at every Stroke Camp. Life truly is about being connected to one another, and these folks "get" it …

Monday, July 4, 2016

Much to celebrate with gift of music at Strike Out Stroke

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

Despite what the headlines tell us, there is much to celebrate in America this 4th of July week. That was emphasized this past weekend at our annual Strike Out Stroke event at the Peoria Chiefs, sponsored by OSF HealthCare and Illinois Neurological Institute.

This year our Dream Team featured individuals who survived their stroke at an early age, and that's why they're wearing our new T-shirt, "Strokes aren't just for seniors." We're seeing more and more young survivors at our Stroke Camps across the country.

We were fortunate to feature the Chime Strokers, a tone chimes choir made up of stroke survivors and caregivers here in the Peoria area. They performed while survivor Randy Randall sang "God Bless America" and caregiver Monica Mugavero sang the National Anthem.

Enjoy their performances as the soundtrack for images from the evening.

Wednesday, June 29, 2016

Healing, lifting and enriching lives in Prescott

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

Seems like yesterday we were in Prescott, AZ, for another amazing Retreat & Refresh Stroke Camp, sponsored by Dignity Health.

To reconnect with campers and volunteers I met at our very first camp in fall 2011 and to meet new folks is a privilege beyond words. At every camp, no matter the location, I discover the power of Stroke Camp and how it heals, lifts and enriches lives in so many ways.

There was an abundance of laughter and even some healthy tears this weekend in Prescott as you could not help but be transformed by everything and everyone surrounding you and touching your life in unique ways.

Soak in the smiles and the true meaning of life …

Monday, June 20, 2016

Memorable moments in Miami

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

It was so exciting to be part of our second camp of the year and the first camp near Miami in mid-May, thanks to the sponsorship of Medtronic, in Association with Boca Raton Regional Hospital.

It's always so rewarding to be present for the birthing of the new camp, and this camp in Delray Beach was no exception. It was my first for the year, and there was much to do and learn with the new theme and activities built around a strong foundation that was started in 2004 by our founder Marylee Nunley and her husband John, a stroke survivor.

There's magic at every camp, and the Miami camp gave us many memorable moments. Here are just a few …