Stroke survivor finds a ‘new normal’

by AMERICAN HEART ASSOCIATION NEWS

news.heart.org

Kristen Powers, an athlete throughout her adult life, was doing a training ride for an upcoming half Ironman competition, when she had a minor crash.

With a gashed forehead, the then-33-year-old from St. Petersburg, Florida, was taken to the hospital, stitched up and released. She was chatting on the phone as she sat in her car in the hospital parking lot when the phone suddenly fell from her hand.

She couldn’t pick it up. In fact, she couldn’t feel anything on her right side, and her face was drooping and her speech was slurred. Powers was having a stroke.

Her husband, Jason, rushed her back to the hospital, where it took five hours of testing for doctors to confirm a blockage was cutting off the blood supply to her brain.

Stroke is the No. 5 cause of death in the U.S. and a leading cause of long-term disability. Most strokes can be prevented by controlling risk factors such as high blood pressure.

In Powers’ case, her stroke in 2011 was caused by a piece of fibrous tissue that was removed with a clot-snaring device. The tissue came from an undiagnosed tumor on her mitral valve, one doctors said may have been there since birth.

Once the blockage was removed, Powers had a long recovery to relearn how to speak and run. She set aggressive goals from the outset.

“I told my therapist that first day I wanted to run a 5K,” she said.

It was a goal she’d reach within three months.

On Jan. 1, 2012, Kristen Powers rode her bike for the first time since her stroke in 2011.

Powers also had intensive therapy to regain her speech, training her facial muscles to form words and helping her brain to find the right words and accomplish daily tasks.

“I had to rewire my brain for everything from tying my shoes to writing my name,” she said.

The experience affected her in other ways. Normally an outgoing, vocal person, Powers found herself reluctant to jump into conversations like she did before her stroke.

“It was hard for me to follow conversations,” she said. “By the time I could process it and come up with something to say, the conversation had already passed.”

Kristen Powers with her husband, Jason, at the Marine Corps Marathon in October 2012.

It was a difficult time for Powers, who had a degree in journalism and worked in marketing and communications. It took a year of therapy before Powers was able to completely regain her cognitive and speech patterns.

“It was like someone had taken it away from me and I had to fight to get it back,” she said.

Powers worked to maintain a positive attitude the first couple years after her stroke, but would occasionally find herself suddenly overwhelmed by emotion.

Now 38, she’s more reflective about her experience now, and says she is grateful to have largely recovered to her “new normal.” She still runs marathons and cycles, but had to back away from triathlon events after finding she tired more easily.

“I really became an activist,” said Powers, a longtime volunteer with the American Heart Association. “I’ll take any opportunity I have to speak about my experience or raise awareness about stroke.”

At times, her right side still causes difficulties. She’ll scuff her toes and sometimes tumble. Crowds occasionally overwhelm her and the elegant penmanship she always prided did not come back.

“If that’s the worst of it, I think I’m okay,” she said.

Photos courtesy of Kristen Powers

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.

Instead of the Arena

Instead of heading to the arena, former NBA athlete went to the emergency room for stroke.

By AMERICAN HEART ASSOCIATION NEWS

news.heart.org

Former NBA player Juaquin Hawkins was finishing a series of road games with his basketball team in Australia when he reached to turn on the faucet and the finger tips on his right hand began to tingle, a feeling that quickly ran up his arm.

“I thought that my arm was numb from sleeping on it,” said Hawkins of the morning of Jan. 1, 2008. “But then I got this throbbing headache, like someone was hitting me with a bat.”

He felt nauseated and his vision blurred, so he returned to bed, thinking maybe he just needed to lie down. Instead, the symptoms worsened and his right arm wouldn’t move at all. He decided to go look at himself in the mirror and everything looked normal, until he tried smiling and saw the right side of his face droop.

“I was so terrified, that I just looked away,” he said. “If the idea of a stroke came into my head, I immediately pushed it away. I was a 34-year-old professional athlete. I thought strokes were something only the elderly experienced.”

Hawkins’ roommate had already left for breakfast with the rest of the team. During this time, Hawkins, in the room by himself, decided to revisit the mirror to see if his face was still disfigured. Taking one step from the bed he immediately crashed to the floor. The entire right side now had no feeling. He found a way to drag himself to the door to retrieve some help — but after opening the door he found the hallway empty.

He began to panic.

“I knew something was really wrong and was just trying to brace myself for whatever was going to happen next,” he said.

Hawkins could barely make out the word “doctor” by the time his roommate returned. But when the team masseuse arrived, the feeling in Hawkins’ right side had returned. Very uncomfortable and after repeatedly asking to be taken to a doctor, the team officials didn’t realize the urgency and insisted he get to the airport and accompany the team on the last flight of the day to the next game.

During the two-leg flight, Hawkins felt agitated. His speech stuttered, he had a throbbing headache and felt weak. After checking into the team hotel, he was taken to a hospital and diagnosed with dehydration with no additional testing done. He was given intravenous fluids and discharged after a few hours.

The next day when he woke up, he began to feel nauseated again and was unable to hear out of his right ear. Eventually the team officials were able to take him back to the hospital where a CT scan showed bleeding in his brain.

Hawkins was shocked when the doctors told him that he had suffered an ischemic stroke and may never play basketball again.

“I just said, ‘I can’t have a stroke, I’m a professional athlete and I have a game tonight,’” he said.

Hawkins’ diagnosis came 27 hours after his first symptoms appeared. It was too late for the clot-busting medication tissue plasmogen activator. He was given anti-clotting medication and he stayed in the hospital for a week. During that time, his speech and cognition became impaired.

“It got to the point where I couldn’t tell the difference between a circle and a triangle, or read a sentence,” he said.

While he didn’t lose the ability to walk, he felt weak and struggled to maintain stamina.

Hawkins finished his season off the court and would spend the next three months undergoing therapy to recover his speech and memory, as he continued to stutter and experience aphasia for almost three years. He’d confuse his daughters’ names at times and had difficulty maintaining a conversation.

“It was embarrassing for me, so I found myself just not talking, shaking my head or nodding instead,” he said. “I was always worried I’d say the wrong thing.”

He also experienced severe depression and went into a financial crisis after not being employed for quite some time. That caused him to lose his home. He moved his family between hotels and the homes of friends and relatives before getting back on his feet.

After some time, Hawkins did return to the court prematurely but after a year he decided to officially retire. His 14-year career had included teams in five countries. In the NBA, he played briefly with the Los Angeles Lakers, Los Angeles Clippers, Milwaukee Bucks and Golden State Warriors during preseason training before joining the Houston Rockets during the 2002-2003 season.

He found a new path as a coach, working with area schools to provide athletic and mentoring programs. He also started Hawk Hoops, a youth mentoring and basketball program teaching players the fundamentals of basketball and to play in tournaments locally and nationally. His teams competed earlier this year in the Annual Mercadel/Hawk Hoops stroke awareness tournament. Earlier this month, they played in the AVAC Hoyas and West Coast Power Alliance’s Stroke Awareness Basketball Tournament in Seal Beach, California.

At times, Hawkins will speak to his players, their families and outside organizations about his stroke experience.

“It’s a big part of my life now,” he said. “It made me a better person and gave me an experience that I can use to educate other people on how to deal with stroke or hardship in general.”

In addition to Hawk Hoops, Hawkins is a paid motivational speaker. He also published a book about his experiences called “A Stroke of Grace.”

Over the last several years, Hawkins has shared his story in media interviews, volunteering as an American Stroke Association national Power to End Stroke ambassador in all communities, but with a special devotion to black communities.

Blacks have almost twice the risk of first-ever strokes compared to whites, and experience higher death rates due to stroke.

In 2010, Hawkins received a “Power Award” from the ASA for the volunteer work he’s done, both nationally and throughout Southern California.

“Raising awareness is very powerful for me,” he said. “Every time I talk to someone who has had a stroke, we connect immediately. I feel so grateful that I can give inspiration to others to keep working toward recovery.”

Doctors aren’t sure why Hawkins had the stroke. He did not have a family history or any risk factors.

Today, he lives near San Bernardino, California. He continues to take a daily aspirin and tries to maintain a healthy lifestyle by eating the right foods.

Now, 42, he still experiences some effects from his stroke. His right side gets colder than his left, and he can’t drive more than 45 minutes without his right leg feeling like it’s falling asleep.

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.

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Oh, We Are Going to the Hospital

The following personal story was published on the American Heart Association web site: http://news.heart.org/
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My daughter suffered an acute ischemic stroke on 8/23/2014 while moving into her college dorm at the age of 17. Luckily I was there and knew what was happening. She fell on the floor and was paralyzed on her left side, unable to speak clearly. I had the roommate sit with her while I ran to the security desk for them to call 911. Ambulance arrives, starts taking information and her symptoms go away, they suggest maybe we don't want to go to the hospital now?

I said oh we are going to the hospital, why would they even offer that? Had I not been there what would my 17yr old have said?

Rushed to Lankenau because once they had her on the stretcher she was paralyzed again on left side. Once at Lankenau Hosp the neurologist in the ER says to me "well either she is having a stroke or she is faking"! So you know I let him have an ear full! Then she comes back from MRI and they confirm, deep clot in right side of the back of her brain.

They explain to me what the up and down side of administering tPA. I give permission to administer and hold my breath that its not a bleed. By now my husband has arrived at the hospital and we just can't figure how this has happened. She is moved to ICU and the next afternoon she is transferred to Childrens Hospital of Philadelphia. She is only 17 and they are better equipped to treat her.

After one week there and many tests to find out why, we still are not 100% sure. They feel that her Lipid A was elevated and with hormone from her birth control, that is what caused the stroke. She was transferred to inpatient rehab for two weeks and then discharged to outpatient rehab, which she followed for 10 months. She was able to start college the Spring of 2015 while going to rehab locally.

While inpatient we discussed getting a tattoo which she had asked me for many times before and I always said no, Her stroke made me realize I had to put things in my life in perspective. I said yes, but make the tattoo meaningful to you and not some guys name or some silly picture you will regret. She had the date of her stroke tattooed on the back of her left shoulder! She said in her instagram picture of the tattoo, "People tell you not to get a tattoo because they are permanent, but this day will always remind me that life itself is temporary"! How can I argue with that!

My daughter will be starting her junior year in college in the fall and she had a full scholarship that day 8/23/2014 to play basketball on the Woman's Division I team there at Saint Joseph University in Philadelphia, PA! They have honored her scholarship and she has worked endlessly to get back to where she was that day. The season starts November 2016 and we are hoping and praying she is on that court in her uniform for which she worked so hard for!

Reading all of your stories, I think we each gain something from each other and puts life in perspective with what each of us has lost, gained and shows the true strength that lies within each of us. Best of luck to all of you in your lives and recovery! Like Prince's song, We are trying to get through this thing called Life!

American Heart 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.

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Caregiving: Then Reality Sets In

The following article was first published on the Care Partners Resource web site (carepartnersresource.com) in April 2013. The author, Lori, is also the owner of the web site and a volunteer at our Colorado Stroke Camp. I encourage you to visit her site for
excellent articles and help on caregiving.
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When you’ve said YES to Caregiving: then reality sets in.

Posted by Lori (click the blue link to see her site) on Tuesday, April 16, 2013.

Most people have no idea what comes with saying “YES” to caring for a loved one. What do you do once you have said yes and then realize it is more than you bargained for? Maybe it is an immediate “oh no this is more than I can handle,” maybe after a short while you realize you aren’t cut out for this or perhaps you have been caring for your loved one for a while and things have changed so you to no longer feel able to meet the needs of your loved one or yourself. There are many reasons you could feel in over head and with that decision comes: guilt, a sense of failure, betrayal or fear of judgment.

Is it fair to judge yourself for being honest? Is it fair for others to judge you? The answer to both is NO and yet we cannot help but do it. I am sure many of us have had feelings that this is just too much but feel there is no way out. We continue to go on as we have for many reasons, the emotions mentioned above or money or you simply don’t know how to make a change.

A friend recently told me something that resonated in many ways. She asked “how often have you made a commitment and for whatever reason you realize you can no longer honor your decision?” She followed up with this very wise advice: Ask yourself are you now continuing to honor the promise to your loved one (or the person to whom you have made the commitment) or are you just committed to the commitment? Is this truly doing the honorable thing or are you becoming a martyr?

As a caregiver I was faced with this decision many times. I was fortunate to have finances and a supportive family that allowed me to not only do what was best for our mom but also care for myself in the process. Our care plan changed many times over the 8 years.

Many caregivers are not met with support when they voice their challenges. There is often judgment and resistance from family members and friends. Some caregivers have no one to help them during these challenging times. And even with support there often is self criticism and doubt.

How can you find solutions to alter your care plan that also honors the commitment and your needs? Here are some steps to help begin the process:
Identify the challenge(s). Be specific, can you see how each of these may have different solutions?

– I am exhausted
– I am depressed
– I feel isolated and alone

2. Ways to identify the challenge. Start by making a list and then try to identify what is causing the problem. Often the original challenge is not actually the problem.

– EXAMPLE: You may think the challenge is you have lost your patience. But you discover the problem is you are exhausted. Once you think about it you realize the reason is not due to lack of sleep but due to depression.

3. Work on one challenge at a time

4. Start your search to solve the problem: Seek help from a professional

– A good place to begin is mentioning the situation with your loved ones physician

– Seek advice from other caregivers. There are many support groups in most areas or on-line
– For many common caregiving challenges you can get solutions by using an organization like Family Caregiving 101, National Stroke Association or The Area Agency on Aging, CarePartnersResource.com, just to name a few. Most of these organizations have on line information and someone you can speak with.

– If you are stuck try Google or Bing they can be great resources. Just type in your problem

It may be that even after this research you still feel unable to continue on in the role as caregiver. There are resources and funding to help in finding alternative care in most cases. Ask about alternatives when you are researching assistance. Finally no matter what you decide is the answer be gentle with yourself. Caregiving is not easy and not for everyone. Taking good care of yourself is the best way to care for your loved one!

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Brainrain Before The Strokelight

I am reposting the following incredible, personal story taken from the American Heart Association's web site, Support Network:

http://supportnetwork.heart.org/blogs/53/191

Hello and thank you for allowing me to share my story.

It was Saturday afternoon and I was home alone trying to rest. It had been a very challenging week at work. I had fallen asleep in the recliner.The clap of thunder startled me from my restless nap. I stumbled to my feet and leaned against the wall for support. I was in pain. Again.
I walked into the living room still holding onto the wall. I felt the rain falling slowly at first. But it couldn't be raining. It was February. . . in Illinois.
The outdoor temperature was well below freezing. Usually snow is the only precipitation falling from the sky around here in February.

But this day was quite different. The rainstorm I felt wasn't outside. The rainstorm was inside. It was inside my brain. But how was it raining in my brain? That’s not even possible, is it? Yes it is. The rainstorm was BrainRain. Yes. BrainRain. The BrainRain was flooding my head. The BrainRain was flooding my body. I didn't know it at the time but this BrainRain was a stroke. I was having a hemorrhagic stroke. My brain was bleeding in multiple places and I had no idea what was happening.

The pain in my brain was hot. The pain in my brain felt wet. The pain pulsated at the top of my head and trickled down the left side of my head, like fingernails scraping across a blackboard. The pain in my brain was traveling, plunging deep inside the soft, gray tissue of my brain. It was unbearable pain, inside my brain. At the same time, I noticed an unusual taste in the left side of my mouth. It tasted a lot like metal. It tasted like the smell of an ammonia-based household cleanser. You know the smell, right?Where did that come from? What was that awful taste?

I tried to speak, tried to say something, tried to yell hoping to release the pain. All I could muster was a moan. It was a moan that crawled up from my belly. I kept leaning against the wall for support. I still didn't know what was wrong but I knew I separately needed help.

Suddenly, I felt another clap. The clap felt like lightning had struck. It hit at the very center top of my skull. The pain was sharp. The pain was burning. That clap was followed by a popping sound in my head. My knees buckled and my right arm and leg dangled at my side. I slid down the wall, inched myself over to the couch and leaned against it.

I looked at my right arm. I could see my right leg and my right foot. But I couldn't feel them. They were foreign to my body. My brain struggled to connect with them, trying to understand why they were just lying there on the floor in an unusual position, doing nothing.

My brain was trying to talk to my arm, struggling to tell my leg, “Move. Get up. We gotta get UP.” But no words came out of my dry mouth. My limbs could not and would not obey my thoughts. And my thoughts were swirling. My thoughts were spinning out of control. What should I do? Where did my arm go? Should I call, who did this, why doesn't my arm move, what is, how did, whaaaat!

The heat in my head seemed to become hotter. It felt like fire. Was my brain on fire? I slowly raised my left hand to my head, afraid of what my fingers might find. One by one, my fingers gently searched my scalp. Hmmm. Nothing wet. No flames but I needed to call someone for help. This was a brutal storm. The thunder, the BrainRain, the dangling arm and leg was too much.

I had no idea this emergency, this BrainRain would change my life. I didn't know this emergency would change me and impact my family and friends. I wasn't aware the BrainRain would thrust me unprepared into a new adventure. I grabbed my cellphone. I couldn't understand what to do at first but finally saw a familiar number in my phone directory. I hit the speed dial button. My sister answered her phone and came quickly.

The ambulance took me to the nearest community hospital. That hospital transferred me to another hospital in the city and I spent two days there, according to my sister. I don't remember a thing. The nearest certified stroke center was UI Health in Chicago. I was transferred there from a community hospital. At the hospital, the doctor asked my family to step outside my room so he could speak with them. At the time, I was in and out of consciousness asking for somebody, anybody, to rub my head, hoping for some relief. The doctor gave my college-age son and my sister the bleak news. His words
were short and his tone was very serious.

"Intracranial hemorrhage. Quite serious. The most fatal type of stroke. She has thin, ruptured arteries. Lots of blood in and on her brain. Her brain is swollen. She's having seizures and clots in her legs and lung. We'll do our best but don't know if she will make it. We'll keep you updated."

The moments in ICU stretched into hours and the hours stretched into days. Family and friends kept vigil. My condition worsened and I had to be intubated. My family and friends hoped for the best and prayed for a miracle. As the days turned into weeks, I began to slowly improve. The doctors were shocked. The Lord had answered the prayers with a resounding “YES”. The bleeds began to heal and the swelling subsided. I regained some use in my right side.

The Lord used UI Health to save my life and assist me in recovery and renewal. They weren't able to find the cause of the bleeds. Even after five brain angiograms and thorough full-body testing, they didn't find a direct cause. I didn't have any of the risk factors: never smoked, not a drinker, no diabetes or HBP nor AFib. But as a result of this experience, I am more vigilant about my eating and exercise. The neurological education has been a great help.
I'm thankful to learn so much about our incredible brains.

UI Hospital was home for nine weeks the first time, and approximately ten days with the second BrainRain stroke. I needed surgery on my brain to remove the second bleed. I was discharged with a wheelchair and other assistive equipment. The therapists sent me home with a large packet of exercises, self-care tips and taught me how to walk with a cane and AFO. I needed professional home care the first couple years. My family and friends
were extraordinary. They drove me to my doctor appointments, cooked, shopped, cleaned, helped me manage my finances, cried and prayed with me.
I could not have made it without my sons, sister and my friends.

I am so grateful for the wonderful acute physical and occupational therapy and outpatient therapy which continues even today. It has been seven long years and I have never given up hope. I do have a number of deficits-field cut, foot drop, weakness in the affected arm/leg, some cognitive challenges and chronic headaches. I see these deficits as an opportunity to learn and function in new and different ways.

I am thankful for the BrainRain. That might sound odd but let me tell you why I am so thankful.
When a severe rainstorm occurs, there can be uprooted trees, damaged tree branches, flooding and inconveniences. The rainstorm in my life, the BrainRain, caused some 'uprooting' in my life. I needed to remove some things. I got flooded with many changes. Many of them were necessary.
The 'tree branches' in my life were pruned and are still being pruned. I'm still growing and learning.

Yep. It was painful. I definitely would not have pulled up to a drive-through window and ordered “One BrainRain to go, please.”
Definitely not.

But the BrainRain refreshed my thoughts, my relationships, and my health. I now have an opportunity to serve as co-leader of the Living After Stroke support group at the hospital. As I visit and encourage other stroke patients, they strengthen me. I've also had the opportunity to do some stroke public service announcements on local television during his past National Stroke Awareness Month.

BrainRain has given me the chance to serve in various capacities, in my local fellowship and in the community. I’m currently working on my first nonfiction book. It is designed to encourage and empower other stroke survivors to be champions. My book will outline a practical 5-step framework to uncover hurt and develop hope and healing. I'm looking forward to sharing the book with you later this year.

I've gained new friends and met some amazing people. Without having the strokes, I would have never met these friends or had such wonderful experie
Yes. I am thankful for the rainstorm, the clap of thunder and the lightning.
I am grateful for the BrainRain.

©Marshelle Samuels, StrokeLight: Uncover 5 Steps to Heal Your Hurt and Have Hope Again, (Columbus, Ohio, AAE, 2016)

Thank you.

Posted by StrokeLight2B on Jun 13, 2016 3:26 AM CDT

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.
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