New Morning

I hope you enjoy the following which is reposted from a recent article in the StrokeConnection website:

http://strokeconnection.strokeassociation.org/Fall-2016/New-Morning/

A Unique Perspective on His Survival
by Stroke Survivor and Comedian John Kawie

The good folks here at Stroke Connection offer support and guidance through every step of your recovery. My column offers none whatsoever, but I think it might be time for a change. So let’s begin with that first exciting morning home and what you can expect.

1. What is home, exactly?

It is a place with no doctors, nurses, stethoscopes, syringes, bedpans, Ativan or nuclear powered laxatives. In other words, it’s a fun yet dangerous environment … a stroke survivor’s Six Flags minus the seatbelts or call buttons.

2. Is there anything there that can kill you?

Yes. Everything.

3. Will you be confused?

Very. Okay, you’re comfy and cozy sleeping soundly in your own bed when suddenly, at 4 a.m., your eyes pop open like a ventriloquist dummy. Nobody’s sticking a needle in your arm and drawing blood so you look under your bed wondering, “Where is everyone?” No worries, this is normal. It’s known as TDH, The Dracula Hangover, and it will eventually disappear. Remember, you are now a civilian who can boldly roll over and slip back into Dreamville.

4. What happens in the bathroom?

First, oral hygiene. I’m assuming you did this daily in the hospital and discovered your own one-handed technique of applying toothpaste on a toothbrush. If not, this might be the reason nobody visited you.

For a guy, shaving is second. Again, I’m assuming you mastered the one-handed method. If you didn’t, I’d recommend going Duck Dynasty and growing a beard. Otherwise, you’ll probably Van Gogh your ear trying to get your sideburns even. On the plus side, you’ll become familiar with the Department of Plastic Surgery — and who knows what celebrities you might meet!

5. Are you really going to wear that?

Congratulations, you made it through the bathroom leg of the morning unscathed ... no small feat because the bathroom is the Death Star of the home universe. You’re one bar of soap away from a trip to the morgue.

Time for the dreaded “C” word…clothes! … a must if you plan on going outside. So take the plunge and open your closet door. Even if you don’t have a large wardrobe, the visual impact alone will make you feel like you have more options than Beyoncé figuring out what to wear to the VMA Awards. In the hospital, you had three simple choices: naked, hospital gown and sweats. (Correction, two — because naked and hospital gown are essentially the same thing.) But now? You’re a stroke survivor with the decision-making capability of an ill-trained border collie and your brain is about to explode.

So close your eyes, dive in, grab something and coordination be damned. Sure, your wife will call you Clarabell for the rest of the day, but who cares? You made your first decision.

6. Now what?

Now comes the fun part — Outpatient Therapy. This will be your day job for oh … roughly one week to three years, depending on your insurance, of course. With enough practice, you could go from wheelchair to cane and maybe even from cane to no-cane. Granted, you’ll be moving as fast as the line at the Department of Motor Vehicles, but at least you’re moving.

And that’s it!

You crushed your first morning. And you’ll do it again tomorrow and the day after that and so on. How do I know? Because you possess the kind of pioneering spirit exemplified by Stroke Connection readers.

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ANNOUNCING!!

We have grown so much in the past years that we have decided to establish ourselves as a national organization called United Stroke Alliance. Retreat & Refresh Stroke Camp, Strike Out Stroke, and our Elementary Education Program, will all be a part of that. 

The official announcement was made in our Winter News Letter that just came out and I have included it below for those of you who do not get our quarterly letters. Our letters have been in paper form but starting with the Spring 2017 edition we will go digital, and I will try to include them or a link to them from this blog. That way, if you're not on our mailing list (which is nearly 3,000 addresses) you will be able to see them, too. 
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Retreat & Refresh Stroke Camp has blossomed into a New National Non-Profit, and we are excited to unveil this fresh new organization for you with an expanded mission and strategy for the future. 

It all began humbly 13 years ago, in Peoria, IL with a small group of volunteers focused on the basic goal of providing stroke survivors and caregivers a “refreshing” weekend break from the grind of recovering from and living with stroke. The success of this initial altruistic venture has grown to TWENTY-EIGHT camps in NINETEEN STATES in 2016! 

Simultaneously, Retreat & Refresh launched the largest Grass Roots Stroke Symptom Awareness Campaign in the Nation with Strike Out Stroke (SOS) which has introduced tens of MILLIONS of people to the FAST (Face, Arms, Speech, Time) message over the last four years! 

But, there is more….The final program advanced for their progressive stroke awareness agenda is the Elementary Education Program focused on teaching 10-12 year old children about stroke symptoms and prevention which the students can share with their extended family and friends. Thousands of children have successfully participated in this results-oriented pilot, and now the program is ready to be launched nationally. 

Retreat & Refresh had grown exponentially beyond anyone’s imagination from its humble beginnings. Marylee Nunley and Larry Schaer knew that the organization needed strategic guidance and external management experience. In February of this year they launched an independent, fiduciary National Board of Directors. 

At their first meeting, the National Board quickly realized that the organization’s incredible growth and diverse programing needed an umbrella organization, branded so it could be recognized for the national stroke powerhouse it had become. Thus, United Stroke Alliance was formed. 

The expanded vision pillars upon which United Stroke Alliance stands are summarized by the simple acronym, PAR: 

Prevention and Preparation: Diet, exercise, nutrition, estate and health planning 

Awareness: Education, recognition, and action 

Recovery and Rehabilitation: Stroke Camps and support of sponsoring therapeutic organizations 

Obviously, we will not do this all at once! This vison will be implemented over time as sponsorships, donations, and partnerships are created to execute the strategy. 

With concerted effort, United Stroke Alliance will soon be recognized nationally as one of the leaders of stroke prevention, symptom awareness, and recovery and support for those affected by stroke. To drive this forward, the Board recommended a realignment of responsibilities and title to lead this new organization. 

Marylee Nunley was named Chairperson of the Board of Directors and will be the Chair for all strategic board related meetings and activities. Operationally, Marylee continues leading where her heart is and always will be as the Director of Retreat & Refresh Stroke Camp.

Larry Schaer has been named President and CEO of United Stroke Alliance. Larry’s role will entail providing strategic direction and execution of the vision of the organization. A critical success factor for this vison will be finding the sponsorships and fundraising dollars to support growth, while creating corporate partnerships to collaborate with United Stroke Alliance’s programing deliverables. Larry has been the engine behind the entrepreneurial expansion of Retreat & Refresh and SOS for years so these new responsibilities naturally fall in his executive wheelhouse. 

Our new website unitedstrokealliance.org will be unveiled in the very near future! 

Our new United Stroke ALLIANCE includes you! YOU are part of The Plan. We need you to volunteer, to attend camp, and  help drive our vison forward with your ideas. Very importantly, we need your financial support. 

Retreat & Refresh Stroke Camp and Strike Out Stroke have accomplished miracles with limited resources. In launching United Stroke Alliance, we are taking our rightful place on the national stage, and we need your donations to take us there. Please join us by making a meaningful year-end gift enabling United Stroke Alliance to fulfill our mission as leaders of stroke prevention, symptom awareness, and recovery and support. 

You can do so by clicking here: strokecamp.org, and click the DONATE button.

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Caregivers Top 10 Christmas Wishes

Amy Goyer is AARP’s family, caregiving and multigenerational issues expert. She spends most of her time in Phoenix, where she is caring for her dad, who lives with her. She is the author of AARP’s Juggling Life, Work and Caregiving. Follow Amy on Twitter @amygoyer and on Facebook.


by Amy Goyer

I recently had the great pleasure of representing AARP on The Doctors to share some of my top caregiving tips, give away copies of my new book, Juggling Life, Work and Caregiving and tell everyone about AARP’s Random Acts of Kindness for Caregivers contest. (You can watch the segment, below.) It made me think about what I really want for Christmas this year and it’s exactly that: small kindnesses that free my time, nurture my soul andminimize the stress of the holidays while maximizing the joy.

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In that spirit, I decided to dig deep this year and share the things — realistic and not — that I’d love to receive, hoping that other caregivers will do the same. So here goes …

Top 10 Things I Want for Christmas:

10. A million dollars. Just kidding. Well … maybe not completely kidding. The financial stresses of caregiving have me on my knees like so many other caregivers, so I’d be lying if I said it wasn’t on my Top 10 list! If I can’t have a million bucks or a miracle, how about gift cards for groceries, restaurants that deliver or online shopping sites? Or even treats like coffee shop gift cards?

9. Help with holiday stuff. Trimming the tree, stringing the lights and hanging the stockings: These are all things I want to do to create a joyful atmosphere in my home for Daddy. But geez, how do I find the time? Some willing, helping hands would make these jobs easier and more fun.

8. A hot meal. It’s a huge relief when I don’t have to plan or cook a nutritious meal that Daddy will actually eat. Simple is fine. And if it involves easy cleanup afterward, evenbetter.

7. Holiday picture and cards. It would be lovely to have someone take a really nice photo of our family to have greeting cards made, then address and mail them. It’s a lot to ask, but I haven’t had time to send holiday cards in years.

6. A personal shopper. I often think about the free time I’d have if I wasn’t always rushing to the store between work and caregiving. How about picking up a few things for us when you go to the store? Bonus points for throwing in some fresh flowers.

5. Return purchases. I must have 10 things I’ve bought that need to be returned, exchanged, fixed or otherwise taken care of. There will likely be more after Christmas. Can someone return them for me? It would take me all day, but if five friends each take two items it’s not such an overwhelming task.

4. Two months of filled pill organizers. Seem like an odd request? It takes hours to get the meds organized and we fill them two months at a time. It goes much faster with another pair of hands. Help with other household or caregiving tasks like cleaning, doing laundry, changing bed linens or even yard work would be great, too. Then maybe we’d have time to do something fun together.

3. Peace of mind. When I know that Dad is content, well cared for and safe, I can better focus on the other parts of my life. Someone coming to care for, read to, sing with or otherwise happily occupy Daddy frees me to do other tasks of caregiving (and my own life). I don’t even necessarily have to leave the house.

Get discounts on prescriptions, health exams, eye care and more — AARP Member Advantages »

2. Two uninterrupted weeks at a spa. OK, if you can’t give me that, how about a gift certificate for a massage, facial, mani-pedi, float spa or other self-care experience that will help me relax and reboot? And remember backup care for Dad so I can find the time to actually use the gift certificate!

And the No. 1 thing I want for Christmas: understanding and encouragement. This may come in the form of a cup of coffee and the patient ear of a friend or family member when I’m feeling like I’m going to implode. It can also simply be a kind comment on Twitter or Facebook or here on my blog, or a greeting card that acknowledges my challenges and expresses faith in my ability to forge ahead. Caregiving can sometimes be a lonely experience; knowing I have support means the world to me.

I hope this gives my fellow caregivers ideas of what to ask for this year — and gives the rest of youideas for acts of kindness to offer as gifts for the caregivers in your lives. I plan to offer some kindnesses to other caregivers I know, too.

Meanwhile, I’ll let you know if the $1 million shows up!

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Suggestions for a Simpler Post-Stroke Holiday

The following article was written with stroke survivors and caregivers in mind. However, many people who lead otherwise normal lives have trouble coping with the month of December. There are many reasons why this happens. If you need help coping, I have a book recommendation for you:

"The 12 ways of Surviving the Holidays by Monica vest Wheeler - A quick and thought-provoking guide on how to make it through the busiest and most demanding time of the year, 'the holidays.' The traditional holiday season of Christmas isn't easy for everyone. It can create a wave of good and uncomfortable emotions and circumstances.

This conversational ebook is a perfect gift to yourself or a loved one or friend as it focuses on stepping away from guilt, how to forget the perfect holiday, coping with grief and loss, and so much more!"

It is one I bought myself last year and I intend to read it every year around this time. It was written and published by Monica Vest Wheeler who is a professional photographer and writer who has written other books on issues involving damage to the brain. Monica is also an active volunteer with Retreat & Refresh Stroke Camp. 

I bought the digital version of her book for $1.99 on Amazon.com titled "The 12 ways of Surviving the Holidays". It can be read on any device with the Kindle app which can be downloaded free.
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The following article was written and published on the StrokeNet Newsletter web site by Deb Theriault. Deb is a Senior Contributing Writer and Information Resources Administrator at Strokenet: www.strokenetwork.org.

"Many stroke survivors have found ways to make all kinds of activities easier. Deb shares some of her ideas to make the holiday season easier. It is not necessary to replicate what has been done for decades or even generations!" - Strokenet

You may contact Deb at dtheriault@strokenetwork.org

Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with you readers, with permission from the StrokeNet staff, of course. 

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By Deb Theriault

Stroke makes everything more difficult: activities of daily living, running errands, working, home maintenance, and just about everything else from A-to-Z. So it’s no wonder that the biggest holiday season of the year creates special challenges for stroke survivors and their caregivers. Like everyone else, they want to find ways to enjoy the holidays, and to create wonderful holiday memories. But, how can a survivor or their caregiver do this when in “post-stroke mode?”

I’d like to share a few things that I’ve learned about creating a simpler holiday season. Hopefully, one of these will help you to get more out of your own holiday.

1.	Holiday traditions can be “remodeled.” It pays to revisit your holiday traditions now and then, and post-stroke is a good time. Some traditions are just too “high-maintenance” for an energy-sapped stroke survivor, or a time-strapped caregiver. After I had my last stroke, I had to decide which “holiday rituals” would be the most deserving of my time and limited energy. This was difficult to do, from an emotional standpoint, however it made my holiday more meaningful that year. Since then, I’ve made it a point to revisit my old traditions each holiday season. Tip: Hold on to the most meaningful traditions and rituals, while pruning out those that no longer “speak” to you. You can also simplify existing traditions, or create new ones, as necessary. Be honest with yourself about your likes and dislikes, but don’t let guilt be your guide. Instead, identify those traditions that make you feel the happiest, and let the remainder go.
2.	Simple, inexpensive decorations can be beautiful. I used to love to decorate for the holidays. I still do, but it can consume too much of my energy. So, instead of putting lots of “eye candy” everywhere in my home, I highlight one area to decorate in several of the rooms (the living room gets a little more attention, since it’s where our Christmas tree resides).  Sometimes I only decorate two or three areas in the entire house (for example, the foyer and living room or the mantle, entranceway and dining room sideboard). In fact, just placing large holiday bows in a few high profile areas is enough to set a holiday tone. Tip: I’ve found that floral and fruit craft “picks” are a real time-saver for holiday decorating. Picks can be purchased at just about any craft store, such as Michael’s, JoAnn’s, or Pat Catan’s. Pre-stroke, I used to meticulously decorate our Christmas tree with many ornaments and embellishments, but now I rely on decorative picks in different colors and “themes”. It’s surprising how easily, and quickly, you can pull together a lovely holiday tree (as well as holiday arrangements and wreaths) by just using picks.
3.	It’s ok to let others do the “lion’s share” of holiday cooking and baking. Family members may expect you to carry on your family’s cooking tradition by preparing many of your family’s special foods. But, unless you really have the time and energy to do this, consider passing this responsibility on to others. Tip: If you can, have photocopies made of your family’s recipes and pass them on to younger members of your family, so that they can continue the family cooking tradition. I’ve even heard of people making “scrapbooks” of their family’s recipes, complete with copies of pictures that span several generations. (This makes a nice gift.)
4.	“Well body” relatives make great holiday dinner hosts. I “look healthy” so my family thinks that I can still do everything, but, alas, I cannot. I may be able to manage one more holiday dinner, but soon I’ll have to face reality. Running these festivities gets harder with each passing year, and being in post-stroke mode is just speeding up the inevitable.  Tip: Tell your family that you’d love to host the annual holiday dinner but that you need to take a break. Think about it: you’ve done your share of work over the years. Now it’s time to hand the hosting responsibilities over to others. Even if you think you can pull it off, let others do the work, and just kick back and enjoy their efforts.  If you do decide to host a holiday meal, have your local supermarket prepare your turkey, ham, or other entree, plus the dessert(s), so that you only have to deal with side dishes. Even better, make the meal “pot luck.” Give others the opportunity to shine by having them share their own special dish.
5.	It doesn’t take a lot to create the best holiday memories. I used to let the holidays slip by without doing something “just for fun.” But after my last stroke, I realized that I need to punctuate the holiday season by participating in at least one memorable activity.  Tip: Elaine St. James, author of “Simplify Your Christmas”, suggests recreating beloved memories from your childhood. Just think back to what you loved most about Christmas when you were young and then recreate it (you can apply this to any holiday).  St. James says there’s a good chance those special memories were more about simplepleasures like the smell of a fresh cut holiday tree, looking at holiday lights or spending quality time with your family. Most of these types of memories can be recreated pretty easily, so give it a try. Even if it’s an “abbreviated” version of what you used to do before your stroke, or before you became a caregiver, set aside the time and energy to do one simple, fun thing that says “holiday” to you.

Unwrapping the emotions of the holidays

Monica is a professional photographer, author, and volunteer for our stroke camp and for other camps dealing with other types of brain injuries. I bought her book on surviving the holidays last year and I highly recommend it. Sometimes we don't realize why we don't feel as happy around the year end holidays we think we should. I mean, why not?! Her book will help you through that.

By Monica Vest Wheeler

Yes, ‘tis the season for THAT holiday spirit … which means something different to each of us human beings who recognize traditional and ceremonial dates as winter and a new calendar year blow our way. In the United States, Thanksgiving and Christmas are the most widely celebrated and “legal” holidays.

However, not everyone is enthused about the arrival of THE holidays, and there are more people dreading this time of year, many, many more than you think. If you feel that way, you're not alone.

It's not that most of us are not filled with genuine thoughts of thanksgiving, but the stress of putting on a “happy” face non-stop for six or seven weeks can be exhausting, emotionally and physically. So much is expected of us this time of year that it's easy to put ourselves on automatic just to survive. Automatic can be good at times, but not necessarily during the “most wonderful time of the year.”

I admit that I do struggle with the holidays and have for years. I remember tragedies and losses during these closing weeks of the calendar year, and the ink of those impressions have a sense of permanency simply because of when they happened. And I am not alone.

What I have discovered is that it's all perspective, and everyone has one, as unique as our DNA. While we cannot force someone to change that perspective, we have the power to influence those thoughts and observations in a positive, loving, supportive way. And it's not done in the noisy parade of the holidays, but the quiet corner of personal connections this and any time of the year.

It's all about listening and sharing. It's about helping unwrap the complicated emotions of the holiday experience one layer at a time. It's about exploring the deeper meaning of our human bonds.

It's about unwrapping and sharing yourself, the real you, perhaps the most precious gift of all.

If you'd like to read more about this topic, please consider checking out the following:

https://www.amazon.com/Ways-Surviving-Holidays-Love-Perfect-ebook/dp/B00R67LWXO/ref=sr_1_1?ie=UTF8&qid=1479731962&sr=8-1&keywords=12+ways+of+surviving+holidays

November - National Family Caregiver Month

November - National Family Caregiver Month

As a caregiver do you feel frustration, irritation, anger, even guilty? Guess what? According to the experts that's normal during the course of caregiving. The challenge is for you to recognize this and learn how to manage it. I hope you find something in this post that will help you.

This is from the Support Network website: http://supportnetwork.heart.org

On some devices the two following links will download a pdf file if you open with your browser. If you get the choice, it might be best to open with a pdf viewer, if you have one, otherwise you'll have to search your device for the pdf file, but it will be worth it. 

Click here for a Caregiver Guide To Stroke.

Click here for a Finances After Stroke Guide

Also...Give thanks to your unsung hero!
Caregivers give so much of their time, their hearts and themselves to the people they care for. They ensure the big and little things are taken care of for you during recovery – from brushing your hair to driving to doctor visits. November is National Family Caregivers Month and we are urging you to honor the caregiver in your life by posting their picture and a thank you note on the Support Network.

Instructions: Participation is simple!
1. Take a picture of your caregiver, be as creative as you like.

2. Email it to SupportNetwork@heart.org. We will tag it with a Caregiver “Thank you” frame and upload it, plus your Thank you note here on the photo gallery designed especially for this:

http://supportnetwork.heart.org/caregiver-thanks 

3. Once it’s up we will send you an email so you can let your caregiver know about it.

Submit your photos to us between November 1st and November 30th.
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The emotions of capturing Stroke Camp

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

There's no better job in the world than being a volunteer for Retreat & Refresh Stroke Camp, and being able to capture so many special memories with my camera makes the experience even more priceless.

I had no idea when I starting shooting photos at my first camp in June 2008 that I'd create this obsession with photographing people and amass this collection of thousands and thousands of images. But what I witnessed was amazing and beautiful from Day 1, and that love continues to this day.

I give so many thanks to Marylee Nunley, executive director of Stroke Camp, who invited me to find my own way to reach out to stroke survivors and caregivers. She has this unique ability to bring out the talents and skills of volunteers during that service to campers. That experience truly changed the course of my life in the best way possible.  

I'm extremely blessed to have about 70 of my favorite and the most meaningful photographs I’ve shot in the last nine years, on display during November at the downtown gallery of the Peoria Public Library. Many of these images come from the 89 Stroke Camps I've attended across the country, in addition to the traumatic brain injury camps I connected with starting in 2012.

If you're in the Central Illinois area, please stop by to see me and the exhibit at a special reception at the gallery in downtown Peoria from 1-3 p.m. Saturday, November 19. You'll also find display cases filled with examples of assistive devices on loan from Stroke Camp.  

Here are just a few samples of the many photos I've shot at Stroke Camp in the last nine years that you can see at the display.  ­

Honoring Larry Morris

October 2016 ended as a very sad month for us. We at Retreat & Refresh Stroke Camp lost a great friend, volunteer, and ambassador, Larry Morris. 

CMSGT Larry "Chief" Morris, 75, of East Peoria passed away at 10:20 p.m. Sunday, Oct. 16, 2016, at Snyder Village in Metamora, Illinois.

Larry was with the Peoria Air National Guard for 35 years, retiring in 1994 as Chief Master Sergeant, being one of the youngest to achieve that rank. He was a member of the Retreat & Refresh Stroke Camp since its inception in 2004 and served as a founding board member.

Larry, along with his wife and caregiver, Georgia, have volunteered at our camps since its inception in 2004. Larry survived his stroke for 18 years and in the last eleven years with us he gave hope and comfort to hundreds of other stroke survivors, sea to sea, border to border, across our nation. He is and will always be greatly missed.  

"Larry and his wife Georgia have been active as Board members and volunteers at Stroke Camp since the very first camp in 2004. Larry was an inspiration to all survivors he met all across the country. We will hold dear many very special memories. We know that Georgia will continue to bless us with her volunteerism through the next phase of life. We certainly are better for having known Larry, who was loved by all." - Marylee Nunley, Executive Director Retreat & Refresh Stroke Camp

Larry receiving an award from Marylee in 2009 for best dressed camper

Larry loved to fish - 2010 at the Tiskilwa, Illinois camp

Larry showed he still had the touch the next year at the Lincoln, Nebraska camp

Larry with his wife Georgia on the way to a 2011 Kentucky camp

Larry with Cheri, one of his daughters and camp volunteer

Larry getting into the 1960's spirit at the 2005 camp  

Larry wore many hats as a volunteer ambassador for the camp

Larry was Chief Master Sergeant in the Air National Guard prior to his stroke so the following site had a very special meaning to him. We were on our way to one of the Lincoln, Nebraska stroke camps and he and Georgia wanted to stop and see this. It's called Freedom Rock. 

I have a lot of good memories with Larry and Georgia. Some of them involved traveling with them to out of state camps. Normally all our camp crafts, supplies, skit things, audio/visual equipment, drum circle instruments, etc. are hauled in the camp van but sometimes we have two camps scheduled for the same weekend so we need another way to get the stuff to the second camp. They had a truck with a hitch, the camp had a trailer full of stuff that needed towed, and I knew how to drive. Perfect! 

My other memories are going out for lunch back home every so often with him and John Nunley, a stroke survivor also, co-founder of the camp and husband of Marylee our Executive director. I liked those lunches and traveling with Larry. Yes, Larry is missed.

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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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