Thursday, April 19, 2018

Spring 2018 News Letter

Editor note: Please read to the end of this news letter for a very exciting opportunity to win a POLARIS RANGER 500.

It’s been just over two years since the decision was made to create an umbrella organization that would cover our growing list of services to the stroke community. That organization was named United Stroke Alliance. The name doesn’t change anything about Retreat & Refresh Stroke Camp, its name or logo. It doesn’t change Strike Out Stroke, its name, or logo. It now encompasses our newest addition, The Booster Box, and soon the expanding Youth Education on Stroke (YES) program. As we grew, the name change was necessary to be able to encompass all of our programs. Same services, same friendly staff, just a new name.


Encourage patient-runners to apply and inspire others through their grit and determination

Medtronic Global Champions is a program that recognizes athletes from around the world who have persevered through life-changing health conditions and have returned to active life with the help of medical technology. These remarkable individuals and their stories of grit, determination and triumph serve as an inspiration to others with life altering health conditions. Up to 20 individuals will be selected for the 2018 Global Champions team. Selected honorees receive a paid entry for themselves and a running partner to the Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a complimentary travel package that includes airfare, accommodations, and a host of VIP events.

Global Champion athletes must have a medical device, therapy, or procedure to treat heart disease, stroke, diabetes, cancer, chronic pain, spinal or neurological disorders, obesity, or gastrointestinal and urological disorders. There is no restriction on the manufacturer of these devices, therapies, or procedures. Certain conditions may apply, and applicants must certify that they have discussed race participation with their physician.

If you know someone who lives an active life and is benefiting from a medical device, procedure, or therapy, encourage them to apply to be a Medtronic Global Champion at

Applications will be accepted through April 27, 2018.

See for more details.


New Stroke Camp Registration Software

We are happy to announce a new software program that will make registration easier as well as provide more detailed reports for our Stroke Camps. As with anything new, we expect there will be a kink or two for us to work on, it’s the nature of change. For those who prefer paper registration, we will gladly accommodate you, no worries.

Having trouble registering,? Just call Kerri Rae 309-688-5450.


Can-a-Thon 2018

For those Sponsors that are interested in hosting a Can-a-Thon at their stroke camps again this year, Retreat & Refresh Stroke Camp will assist in coordinating that effort.

In 2017 we collected almost a ton of food that went to local food pantries, we hope to exceed that amount in 2018. Campers and volunteers will get details in their camp welcome packets.


Peoria, Illinois Stroke Survivors 
and Caregivers, 
this opportunity is for you!
Stronger Than a Stroke

  Partnering With

United Stroke Alliance has partnered with Anytime Fitness Peoria to help stroke survivors and caregivers connect and thrive through fitness. Effective March 20, 2018, Anytime Fitness, North Peoria, is offering classes for stroke survivors and caregivers at NO COST. This weekly opportunity from 12-Noon—1:00 pm will be available free going forward. Anytime Fitness will be offering this weekly coaching and support led by their professional coaches/trainers. Come check out the possibilities.

If you want to become a member, they are offering an affordable membership rate for local survivors and caregivers: For more information on membership call Matt at 309-966-4217.

 Month-to-Month $25 

 One-Time Enrollment Fee $25

 Annual Club Enhancement Fee $25 

Anytime Fitness Peoria is located at 1320 W. Commerce Dr., Peoria, IL 61615, Off North Knoxville, behind Kroger and CVS.


5/4—5/6 Camp Courageous; Monticello, IA | Sponsored by: Mercy Medical Center and University of Iowa Hospitals & Clinics

5/18—5/20 Chapel Rock Camp; Prescott, AZ | Sponsored by: Dignity Health

6/1—6/3 Purdue University; West Lafayette, IN | Sponsored by: Franciscan Health Foundation 

6/8—6/10 Salt Fork Lodge & Resort; Lore City, OH | Sponsored by: OhioHealth

6/8—6/10 Fellowship Deaconry Ministries; Basking Ridge, NJ | Sponsored by: Overlook Foundation and Atlantic Health Systems

6/15—6/17 Crestfield Conference Center; Slippery Rock, PA | Sponsored by: UPMC Rehabilitation and Stroke Institutes 

6/22—6/24 Warren Conference Center; Ashland, MA | Sponsored by: Brigham & Women’s Hospital

7/5—7/8 Lutheran Outdoor Ministries Center (Family Camp); Oregon, IL | Sponsored by: Retreat & Refresh Stroke Camp

7/13—7/15 Elmhurst College; Elmhurst, IL | Sponsored by: Amita Health Neurosciences Institute 

7/20—7/22 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, Illinois

Neurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth 

7/30—8/1 Chapel Rock Camp; Prescott, AZ | Sponsored by: Power of the Purse, Dignity Health, HealthSouth East Valley Rehabilitation Hospital

8/3—8/5 Pilgrim Park Camp; Princeton, IL | Sponsored by: Illinois Neurological Institute at OSF 

8/10—8/12 Highlands Retreat Center; Allenspark, CO | Sponsored by: Cheyenne Regional Medical Center

8/10—8/12 Michindoh Conference Center; Hillsdale, MI | Sponsored by: St. Vincent Mercy Medical Center**

8/24—8/26 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, IllinoisNeurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth 

8/24—8/26 Faholo Conference Center; Grass Lake, MI | Sponsored by: Henry Ford Health System, DeMaria 

8/24—8/26 Carol Joy Holling Center; Ashland, NE | Sponsored by: Lincoln Stroke Partnership, Bryan Health, Madonna Rehabilitation Hospitals, St. Elizabeth

9/7—9/9 Lake Junaluska Conference Center; Lake Junaluska, NC | Sponsored by: Mission Health 

9/7—9/9 Green Lake Conference Center; Green Lake, WI | Sponsored by: UW Health

9/7—9/9 Pilgrim Park Camp; Princeton, IL | Sponsored by: Retreat & Refresh Stroke Camp 

9/14—9/16 Airfield Conference Center; Wakefield, VA | Sponsored by: VCU Health

9/14—9/16 Broom Tree Retreat & Conference Center; Irene, SD | Sponsored by: Siouxland Stroke Support Network

9/21—9/23 Waycross Camp & Conference Center; Morgantown, IN | Sponsored by: Franciscan Health –Indianapolis/


9/28—9/30 Cohutta Springs Conference Center; Crandall, GA | Sponsored by: Erlanger Health System, HealthSouth, Siskin Hospital, Chiesi

10/5—10/7 Ceta Canyon Retreat Center; Happy, TX | Sponsored by: Medical Center Health System 

10/12—10/14 Rock Creek Resort; Red Lodge, MT | Sponsored by: St. Vincent Healthcare 
10/12—10/14 Pleasant Ridge Retreat Center; Marietta, SC | Sponsored by: Greenville Health System** 

10/12—10/14 Faholo Conference Center; Grass Lake, MI | Sponsored by: St. Joseph Mercy Oakland**

10/19—10/21 Rock Springs 4-H Center; Junction City, KS | Sponsored by: Kansas Family Stroke Foundation 

10/19—10/21 Echo Grove; Leonard, MI | Sponsored by: St. John’s Hospital & Medical Center 

10/26—10/28 YMCA of the Rockies; Estes Park, CO | Sponsored by: Good Samaritan Medical Center**

11/19—10/21 The Resort on Mt. Charleston; Mt. Charleston, NV | Sponsored by: St. Rose Dominican (Dignity Health)**

**Pending Sponsorship Confirmation


Hope to see you for our Tropical Island Getaway theme!

Sail Dates: March 09-March 14, 2019

Is it adventure you seek, or a restful retreat from life on land? 

Royal Caribbean's Independence of the Seas® is home to an array of innovations that give you whatever type of vacation you desire. But this isn't just a cruise ship. It's an adventure that sails way ahead of the curve. Surfing. Rock climbing wall. Ice-skating. Mini-golf. Outdoor Movies. 

Come seek all this and more on Independence of the Seas - your biggest vacation yet. Ship’s registry: The Bahamas.

5 night Caribbean cruise Independence of the Seas

Itinerary: Ft. Lauderdale, Fla. - Cruising - Labadee, Haiti, Falmouth, Jamaica - Cruising - Ft. Lauderdale, Fla.

Cruise Only Pricing Per Person based on Double occupancy: 

Interior $459.00      Ocean $549.00     Balcony    $649.00  
   Category 4V           Category 8N           Category 6D                                                plus taxes and fees $97.91                             

A special message from your travel agent: We have confirmed a limited number of accessible cabins and regular cabins in the above categories. Other category cabins are available.  Triple and Quad rooms can be booked subject to availability.  Contact me soon to reserve your space.  Deposit $250.00 per person at confirmation.     

For more Information/Reserve contact: 

JOHANNA McCARTY, Outside Sales Agent  
P.O. Box 625, Charleston, Il. 61920      
Phone: 217-532-2847(Available M-F 9AM-5PM) 

Arrow Travel is acting as a mere agent in accepting reservations for services not directly supplied by this agency.  Traveler assumes full responsibility for verifying documentation required for travel.  Arrow Travel and its employees are released from any claim arising from causes not within its control. 
SURVIVOR STORY: Featuring Bill


All his life, Bill has been active. He spent 31 years in the Air Force working in air freight and passenger service before becoming a pastor and working other jobs. With five children and eight grandchildren, there are always activities and chores — from raking the leaves to fixing bicycles to playing a game of basketball. 

There were no signs of illness — aside from a little fatigue — 
before he collapsed one morning with a massive stroke. “No warning whatsoever,” Bill says. “We had been talking, he got up to go to the bathroom and I heard things falling,” remembers Donna,

Bill’s wife of 47 years. “I found him on the floor, unconscious. He couldn’t talk and couldn’t move.” 


After Bill was stabilized at the hospital, his medical team set out to determine what caused the stroke. “One of the main etiologies for stroke is atrial fibrillation,” says Gary Boliek, M.D., a cardiologist at Baptist Health in Lexington, KY. “Patients are sometimes symptomatic in that they may feel their heart racing irregularly. But many times, atrial fibrillation is silent.” 

Atrial fibrillation (AFib) is a common condition in which the upper chambers of the heart, or atria, beat very fast and irregularly so the heart can’t pump blood effectively to the rest of the body. AFib increases the risk of stroke more than 5 times,1 but often goes undetected since it can happen infrequently or without symptoms. 

A heart monitor could determine if Bill had a heart arrhythmia. There are many types of heart monitors and they vary by how long they can be used and how information is captured. One type of monitor captures heart activity for up to two days. Another can be worn for up to 30 days. 

A large study showed that for many patients who’ve experienced an unexplained stroke, known as a cryptogenic stroke, it could take more than 80 days for AFib to appear because the episodes happen infrequently, often without symptoms.2


Bill’s doctor decided on the Reveal LINQ Insertable Cardiac Monitoring (ICM) System, a heart monitor that watches for
problems 24 hours a day, seven days a week, for up to three years. 

A miniaturized monitor, it is one-third the size of a AAA battery and is implanted under the skin. Data from the device is automatically sent to the doctor. It took eight months before Bill experienced another episode, and the Reveal LINQ ICM detected atrial fibrillation. 

With this information, Bill’s doctor prescribed blood thinners to help prevent AFib from causing another stroke. “If we had not implanted the continuous monitor, we likely would not have detected his atrial fibrillation,” says Curtis Given, M.D., a neurosurgeon at Baptist Health. “Without the [monitor], we might have sent him home on aspirin, for example, and that would not have protected him from future stroke.”


Since his stroke, Bill has celebrated his 80th birthday and is back to helping Donna around the house with vacuuming, unloading the dishwasher, doing laundry, raking the yard and fixing household items. “He still does most everything he ever did, sometimes more,” says Donna. 
She also knows the importance of a rapid response. “Whether you know it’s a stroke or not, get help fast,” she says. 

Bill is happy to be back to his old self. “I just couldn’t imagine not doing the things I’ve always done, you know?” he says. “Now, I can pretty much do what I want to do or what I have to do.”

To learn more about cardiac monitoring for unexplained stroke, visit

This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.

1 Wolf PA, Abbott RD, Kannel WB. Atrial fibrillation as an independent risk factor for stroke. The Framingham Study. Stroke. August 1991;22


2 Sanna T, Diener HC. Passman RS. Et al. Cryptogenic Stroke and Underlying Atrial Fibrillation (CRYSTAL AF). N Engl J Med. June 26, 2014;370 (26):2478-2486.


Larry Schaer | CEO United Stroke Alliance

Over the last 10 years I have had the unique pleasure in meeting great stroke survivors, caregivers, family members, volunteers, and sponsors all over the country. In come cases, it is meeting with interested people who are attracted to the idea of doing a Stroke Camp, a Strike Out Stroke event, or our Youth Education on Stroke program. 

I would like to take this opportunity to introduce you to the folks in North East Kansas. It began when one Topeka stroke survivor participated in the Lincoln, NE stroke camp and wanted to have one in Topeka, KS. I met with the folks from Kansas Rehabilitation Hospital and presented the idea. 

“After we first met, the thought of raising $25,000 seemed like trying to climb Mount Everest. I was inspired by the vision of changing the lives of stroke survivors and caregivers and being a part of their journey,” said Lisa Rundell, Director of Therapy Operations at Kansas Rehabilitation Hospital. Although everyone was excited about the idea, it seemed like a big challenge to find the funds to sponsor a camp. 

After some discussion the first step was to obtain funding through their first Trivia Night held in Topeka, KS. It provided a significant portion of the sponsorship fee for their first Stroke Camp. With additional local sponsors, the first North East Kansas Stroke Camp was conducted in October 2017. From corny skits to Saturday night karaoke, participants left with a feeling of renewal and inspiration to do it again. 

“Having a network of survivors, caregivers, and volunteers that have had a chance to be impacted by the camp firsthand has significantly increased the enthusiasm around continued growth”, according to Barry Muninger, Director of Marketing Operations. 

In February, this group organized their 2nd annual Trivia Night for additional stroke awareness programs. In addition, Youth Education on Stroke programs are being planned for the spring as well as an established website and foundation. In a matter of months, this group is changing the landscape of stroke awareness and support for stroke survivors, caregivers and family members. 

As a result of one stroke survivor wanting a local camp in Topeka, the community is now seeing value of people working together to improve the quality of life. 


Introduction | Getting to know your Board Of Directors

United Stroke Alliance would like to introduce one of our Board of Directors, Mark Belk. Our first contact with Mark was in 2014 when he and his wife, Shannon, a stroke survivor, participated in a Retreat & Refresh Stroke Camp in Green Lake, WI. From that point our relationship has continuously grown from 
campers to a priceless friendship. 

The following year Mark, Shannon, and Joe Romenesko, another stroke survivor, organized and supported the first NE Wisconsin stroke camp. In 2016, Mark and Shannon moved to Omaha, NE where Shannon continues her rehabilitation at the new Madonna Rehabilitation facility.

In the spring of 2017, Mark was elected to the National Board of Directors of United Stroke Alliance. Not only does Mark bring the perspective of a caregiver of a stroke survivor, he has a rich background in information technology, sales, marketing, and general management. His proven leadership and strategic thinking has been demonstrated through his career in working with major companies across the country.

His 25+ year career path has included Vice President- IT for Oshkosh Corporation, Vice President/Global Enterprise Technology and Project Management for Zimmer, Inc, Vice President/Global Information Services for Avnet, Inc., Vice President and
Business Information Officer for Armour Eckrich Meats, Inc; Vice President/Enterprise Center of Expertise for ConAgra Foods,
Inc., as well as other corporations. Mark holds a BS degree in Business (Marketing) and a Master’s Degree in Business Administration (MBA) from Radford University in Radford, Virginia.

United Stroke Alliance is privileged to have Mark’s business expertise and personal experience as a caregiver on the Board of Directors. We look forward to working with Mark in developing and growing United Stroke Alliance into a long term global organization providing community stroke awareness and supporting stroke survivors, caregivers, and their families.



Benefitting United Stroke Alliance



Color may vary
Tickets: $100 each

Drawing to be held when the sale of 200 tickets is complete. Do not have to be present to win.

Raffle License # R-57-18 Peoria County Illinois
To purchase your ticket, please call 309-688-5450


Sunday, April 15, 2018

Survivor’s Best Friend

Retreat & Refresh Stroke Camp
a division of United Stroke Alliance
The following was originally posted in August of last year on the Stroke Network Newsletter at:
By Barb Polan
Anxiety and an ESA

Anxiety is a common diagnosis after a person has a stroke, with approximately one-third of survivors experiencing some form of it. Anxiety disorders include generalized anxiety disorder (GAD), specific phobia, social anxiety disorder, separation anxiety disorder, agoraphobia, panic disorder, and selective mutism.

According to a study done in Sweden by T.B. Cumming, C. Blomstrand, I. Skoog, and T. Linden, published in The American Journal of Geriatric Psychiatry, February 2016, “Those in the stroke group were significantly more likely than those in the comparison group to have generalized anxiety disorder (GAD) (27% versus 8%).” And, “Multivariate regression indicated that being in the stroke group, female sex, and having depression were all significant independent associates of having an anxiety disorder.”

Another study, this one by S.L Crichton, B.D. Cray, C. McKevit, A.G. Rudd and C.D. Wolfe, and published in The Journal of Neurology and Neurosurgery Psychiatry, October 2016, found that anxiety persisted even in long-term survivors, concluding that “at 15 years, the prevalence of anxiety [was] 34.9%.”

With those odds of experiencing anxiety, especially if you are a woman and/or experience depression, you have an approximately one-in-three chance of benefitting from an emotional support animal (ESA).

My own ESA (a 25-pound dog named Turbo) has an instinctive response when I feel anxiety: he himself becomes anxious. It all makes sense – when he’s anxious, he tries to self-comfort: by snuggling on my lap and licking, licking, licking. His favorite targets are my ears and my affected hand.

My husband jokes, “Yes, Turbo’s a comfort dog – he needs a lot of comfort.”

But it works – I comfort him, and in the process, calm myself. It helps that the area behind my ears is ticklish and I immediately smile, plus hugging him and stroking his hair is soothing. As he relaxes, I relax, my anxiety receding back to behind my breastbone instead of rising to block my airways.
Barbara survived an ischemic stroke in November 2009, at 52 years old, caused by a dissection of her right carotid artery, which was probably caused by the physical strain of competitive rowing. The stroke resulted in left hemiparesis and the eventual loss of her job managing and editing a community newspaper. As a result, her physical therapy has focused on regaining the ability to row, something that gets closer every rowing season; for emotional and cognitive recovery, she writes a stroke-related blog and has published a memoir.
Copyright @August 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Monday, April 9, 2018

Turn to the people who've been there

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

by Support Network

Stroke recovery may feel like a lonely process. But the truth is, you're not alone. There are others going through many of the things you are, and they're ready to connect with you right now on our Support Network.

The Support Network is an online social community of survivors and family caregivers - plus experts from the American Heart Association and American Stroke Association. It's a place for sharing experiences, answers, expertise, emotional support and more.

As a Support Network member, you'll exchange milestones, setbacks, triumphs and insights. Find tips to solve your challenges. Post questions for our healthcare professionals to answer. Learn about managing your condition, making progress in your recovery, and feeding your spirit along the way. 

You're also invited to participate in forums, including our newest, MyAFibExperience®. It's a place to get the patient's perspective on atrial fibrillation and find out more about the link between AFib and stroke.

Now's the time to meet your new community. Join the Support Network free. Just click and enroll.
Editor Note: United Stroke Alliance and it's Retreat & Refresh Stroke Camp division are not affiliated with American Heart Association, American, Stroke Association or Support Network. It is my personal choice to include today's reference to Support Network. I feel many of our readers could benefit from joining the Stroke Network site.

Sunday, April 1, 2018

Using hip-hop to teach kids about stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance
Editor's Note:
What many don't know is that United Stroke Alliance, of which we are a division, has another division that focuses on teaching 5th grade students how to recognize the symptoms of a stroke and what to do when one is detected. 

This program has been implemented for many years here in the Peoria, Illinois area, and coincides with our Strike-Out-Stroke (another division of United Stroke Alliance) event at a Peoria Chiefs minor league baseball game at their Dozer ball park here in Peoria in the month of June. As part of this awareness program we hold a stroke awareness poster competition among the 5th graders and people from our organization are selected as judges to determine a 1st place winner from all of the submitted posters. 

And get this...As an award for designing the best poster the winner and one of their parents is flown onto the ballfield in the local hospital's emergency Life Flight helicopter and given the honor of throwing out the first pitch for that day's game. 

It pleases me greatly to see that New York City is now doing something similar at their schools. Their approach is unique and apparently with a lot of success.
The following is from the American Heart Association News Letter:

Teaching school kids the symptoms of stroke and how to react quickly to them is an effective way to potentially save lives and prevent disabilities, according to a new study done in tandem with the educational program Hip Hop Stroke.

Published Thursday in Stroke, the study included 3,070 minority New York City children in fourth, fifth and sixth grade who took part in Hip Hop Stroke, a three-hour multimedia intervention which teaches kids about stroke and encourages them to share their knowledge with parents and other adults.

Three months after the program ended, 24 percent of the kids were still “optimally prepared” to recognize stroke symptoms and quickly call 911.

“If we can get fourth-graders to learn the symptoms and act on them, then we can get anybody to do the same thing,” said the study’s lead author, Dr. Olajide Williams, a researcher and chief of staff of neurology at Columbia University. Williams is also founder and president of Hip Hop Public Health, a nonprofit that uses hip-hop to call attention to stroke and other health issues.

“It’s a very important study with impressive results,” said Dr. Bruce Ovbiagele, chairman of neurology at the Medical University of South Carolina. Ovbiagele, who was not involved in the study, said “it’s pointing us in the right direction of what we should be doing to affect change and [encourage] the general public to call 911 and get patients to the hospital on time.”

Stroke is the No. 5 cause of death in the U.S., killing nearly 130,000 people a year. It’s also a leading cause of long-term disability and the leading preventable cause of disability.

Most strokes in the U.S. are ischemic, in which a blocked blood vessel cuts off blood flow to the brain. If patients get to the hospital within three to four-and-a-half hours, most of them can receive a clot-dissolving drug that may prevent death and improve the chances of recovering.

The Hip Hop Stroke program seeks to teach minority middle school students stroke symptoms such as face drooping, arm weakness and speech difficulty. The program also teaches the importance of calling 911 in order to get parents, grandparents or other adults to the hospital quickly.

During three separate one-hour sessions, the study participants watched animated cartoons and hip-hop music videos and played video games and read comic books – all related to stroke education.

Immediately after the program, 57 percent had perfect scores in a stroke knowledge/preparedness test, compared to only 1 percent in the group that didn’t go through the program. Three months later, one-quarter of the program group retained “optimal preparedness.” Four children wound up using the skills they learned in Hip Hop Stroke to call 911 for real-life stroke symptoms.

The study showed parents of kids who went through the program also became better prepared to recognize stroke symptoms, increasing from 3 percent before the program to 20 percent immediately after.

Hip Hop Stroke focused on economically disadvantaged minorities, especially African-Americans. According to the American Stroke Association, African-Americans are more impacted by stroke than any other racial group in the United States.

“The fact that this study targeted a group that is high-risk, using children, was extremely novel,” said Ovbiagele. “African-Americans disproportionately suffer the burden of stroke.”

Williams said Hip Hop Stroke is a conscious effort to think outside the box when it comes to stroke education in the African-American community and beyond.

“We need to be more creative. We need innovative interventions that leverage all age groups,” Williams said. “Most Americans get to the hospital too late for treatments that can potentially save you or your loved one from a life of disability. We have medications that can mitigate these effects, and yet we’re only treating 7 percent of these patients. That’s a devastating statistic.”

Hip Hop Stroke is available for use by schools and other groups.

“Hip Hop Stroke is a fully online program that can be used by any school or anyone that wants to strengthen stroke awareness in their community,” Williams said. “We need to empower the public to recognize the urgency of these symptoms, to recognize the clock is ticking and call 911.”

If you have questions or comments about this story, please email

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 American Heart Association and American Heart Association News. See full terms of use.


Sunday, March 25, 2018

Our Camp Year Begins With Pat's Story

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance
Pat's Story was originally posted on this blog in 2011. Since we are starting up our camps soon for the 2018 season, I thought this might be of interest to those of you who have been thinking of but have not yet attended one. 

Our camps, attended by upwards of 60 people, are staffed by our professionals, local volunteers and volunteers from the hospitals in your area. A nurse is always on-site. We provide a safe, handicapped accessible, motel/hotel style, camp ground environment with catered food. We provide crafts, seminars, skits, drum circles, and activities all geared for both the stroke survivor and their caregiver. 

Every year we have a different theme. Last year it was country/western and the year before the 80's. This year it will be a different theme but you'll have to sign up to find out what it is, or wait til next year, because we like to surprise our campers.    

If you are interested click on either web site at the top to find out more about us and to get our phone number. Ask us about a camp in your area. Chances are there is one nearby.

This is Pat Ozella's story about her stroke experience as told by her husband Tony. Pat and Tony are members of the camp's board of directors and are very active in the camps and many of the fund raisers we have for the camp.

  Told by her husband Tony

            Saturday, Oct.20, 2001 started off as a beautiful autumn day, but ended up being the worst day in our lives. After going out to breakfast, a usual Saturday custom, we came home and I started to replace the window in our family room. Pat was sitting on the couch, drinking her coffee, watching me so she could help if needed. Just after I removed the old window, I saw her get up and stumble and then fall down (never spilling her coffee). I thought that she just lost her balance until I went over to help her get up, then I realized that something bad was occurring. She could not move her right arm and was having trouble speaking. Our daughter, Jenni (an Occupational Therapist at OSF) was on her way over to visit, so I called her on her cell-phone and told her what happened. She was sure that Pat was having a stroke and told me to call 911 right away, which I did. The Rescue Squad was there within minutes along with one of our daughters’ friends, who Jenni called and was a nurse that lived close-by. We were at OSF with-in one hour of Pat having the stroke and Jenni thought that things would not be too bad, because of getting there in time to receive TPA. The only problem was that Pats’ stroke was due to a hemorrhage in her brain, not a clot. The Doctors kept calling it a “big bleed”, which turned out being as bad as it sounded! The other problem was that it was too deep in her brain to perform any type of surgery on, without destroying more of her brain, so we just had to wait for the bleeding to stop or for Pat to die. They couldn’t tell us what to expect, but did suggest that we all say good-by to Pat, in case she didn’t survive and the Priest gave her “Last Rites”. Pat did survive!!

            After seven grueling weeks in the hospital Pat came home in a wheelchair and not being able to talk. Then we started outpatient therapy, OT, PT, and Speech. Pat had a very good attitude, which was the most important thing and really worked hard to improve; she can now walk with a cane and usually communicate what she wants by various means (some speech, actions, spelling, and expressions). We really feel fortunate, compared to other survivors’ stories about losing friends and even family after their strokes. We never lost friends; we even made new friends, thanks to our Support Group and Stroke Camp!  Another good that has happened is that Pat always wanted grandkids and now has five with one more coming to keep her busy. Pat really enjoys going to Camp, going on vacation, playing in three card clubs, going to Wednesday morning coffee and many other social events. Life is truly what you make of it!

            I mentioned Stroke Camp a few times; this was started in 2004 by a member of our Stroke Support Group as a weekend get-a-way at a local Camp/Retreat Center. We had one camp the first year, then two the following year, and, after word got out about the Camp, four the next year with Stroke Survivors and Caregivers from seven States attending. After seeing how much impact the Camp had on Survivors, the Director decided to go Nationwide with the Camps. Pat and I are on the Board of Directors and volunteer to work at the Camps. This year there are eighteen Camps scheduled in various States. We will be volunteering in Colorado and Texas and maybe Springfield, IL. These camps are all funded by local Hospitals or Fundraisers and donations. I urge anyone who has a loved one or friend that has suffered a Stroke to tell them about Camp. You can find out more information about Camp at our website:

(Editor's Note: over the years, since 2004, we have grown tremendously developing and hosting over 30 camps a year throughout the nation, coast-to-coast, border-to-border. We foresee this trend continuing.)

Sunday, March 18, 2018

Half a World Away: Visual Field Cuts

a division of United Stroke Alliance
The following is from the StrokeConnection website:

I encourage you to visit their site because they have very good articles on stroke.


Strokes often affect vision and processing of visual information. The most common visual deficit is hemianopia (hem-ee-a-NO-pia) or visual field cut. Our visual field is the whole area that we see in front of us — left to right, top to bottom. Each eye has its own visual field, but the brain combines the information from both eyes so we only see the world as one visual field. Like so many processes in the brain, vision is processed on the opposite side, but it isn’t as simple as the left eye is handled by the right brain. Instead, visual stimulation from the left side of each eye is handled in the right visual cortex. Right-side stimulation of each eye is processed in the left visual cortex. The visual cortex is located in the back part of the brain (see How Vision Works below). A stroke that injures either the optic nerves running from the back of the eyeballs through the brain to the visual cortex or the visual cortex itself will cause a deficit of vision in the same area of both eyes. Thus, a stroke in the visual processing area of the right side of the brain causes a problem with the left visual field of the right eye and the left visual field of the left eye.
If the blindness involves the same half of the visual field of each eye, it is called a homonymous hemianopia. There are variations of field cuts that are much less common. For example, a field cut may involve less than half, say the upper left quadrant of both eyes. The top or bottom of the visual field might be gone or maybe a person can only see the center of the visual field (the edges are missing); or the center of the visual field is absent but the edges can be seen. Further, many of these other types of visual field defects can be caused by problems other than stroke. See our From the Eyes of the Beholder infographic for examples of how some common types of field cuts affect vision from a survivor's perspective.
It is not hard to imagine how vision loss would affect your life. “I think it’s fair to say that vision impacts your ability to be mobile, to be independent, to read, to drive and just be productive,” said neuro-ophthalmologist Adam Cohen, neurology inpatient medical director and teleneurology director at Massachusetts General Hospital. “So having vision problems, particularly severe ones like these, can impact any of those functions.”
If you can only see things in the right or left half of the visual field, why not just move your head to the left or right? Called ‘scanning,’ this is a basic lesson in the rehabilitation of a survivor’s vision, but it is a learned response. The brain of the survivor with a field cut is not receiving visual stimulation from the area of blindness so he may not be stimulated to move his head to take in what he is not seeing. And while scanning training may improve the ability to scan and read, it doesn’t actually improve the field cut.

Hemianopia differs from another stroke deficit known as one-side neglect. “In neglect, visual information is being received by the brain, at least at some level, but it is not available to the conscious state,” Cohen said. “For example, someone has a left neglect and you put a clown to the left of them, the neurons might be firing when the vision information is coming in, but the person is not aware of the clown. If you ask the person ‘What’s in front of you?’ They’ll say, ‘Nothing.’”
Of the two, neglect has a bigger impact on function — and a worse prognosis — than a field cut alone. “Someone who has an isolated field cut is more likely to be aware of their problem and thus, more able to compensate for it,” Cohen said. “Whereas a neglect patient is not aware of it because of that consciousness problem, so they’re unaware of the issue and less able to compensate.”
Returning as much function as possible is the goal of rehabilitation of field cuts, and much of that is accomplished by teaching compensation skills, like scanning. “It’s very much an occupational therapy approach,” Cohen said. “There are a host of devices and potential treatments for people with field cut to actually try to expand the visual field, to cure the root of the problem. But those are not yet widely adopted in the medical fields, like neurology, neuro-ophthalmology or rehabilitation medicine. These ‘expansion’ methods have not yet been validated [by scientific studies].”
Prisms are sometimes used to expand the visual fields. Set into a pair of glasses, the prisms bring in the light and objects from the blind side and make it available to the side with sight. “They can be helpful for some people, but I think most of us have found that patients really aren’t able to use them in a sustainable way,” Cohen said. “Most people actually find them annoying and distracting, which also applies to things like mirrors that direct the light from the blind visual field into the seeing visual field. We tend not to recommend those things.”
In the occupational therapy approach, which is delivered at vision rehabilitation clinics and some eye hospitals, the idea is to help the patient maximize existing function and find new tools and tricks to compensate for their problem. Reading provides an example: The survivor puts her finger on the first word of a line of print and then follows her finger with her eyes as she moves it along the line of type. “It’s a lot easier to direct your eyes doing that,” Cohen said. “The survivor’s function is effectively improved without healing the neurons and the neuron pathways that are the root of the problem.”
Visual rehab specialists focus on safety of the patient so in addition to giving them tools and strategies, they often evaluate their home or work environment. They assess how the survivor’s vision deficit affects their activities of daily living: How do they cook and clean and go to the bathroom?
In the recently published rehab guidelines for stroke, the committee said there is a very low level of evidence to support computer-based expansion of the visual field. Cohen agreed that the jury is still out because vision doctors have not fully verified this treatment or deciphered how it works. It may relate to brain plasticity, and the program is somehow recruiting other areas where vision is processed to take over. The problem for survivors seeking treatment is that “these therapies are not standardized, nor broadly adopted,” he said. “I don’t know that they should rule them out, but I wouldn’t dive into them, particularly when they were unproven, expensive and particularly if there were risks involved,” he said. “Approach them with skepticism.”
“The representation of vision is widespread in the brain, so visual loss after stroke is pretty common,” Cohen said. “Around a third of patients will have that problem. Of those with visual field defects, most are hemianopias . . . but we typically don’t see complete resolution of severe visual field cuts. They tend to be pretty resistant.”

This information is provided as a resource to our readers. The tips, products or resources listed or linked to 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 American Heart Association and American Heart Association News. See full terms of use.

Sunday, March 11, 2018

New Guidelines for Stroke Treatment


Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

More stroke patients eligible for crucial treatments under new guidelines


Lea en español

More stroke patients will be eligible for two critical treatments proven to reduce disability, according to new guidelines from the American Heart Association/American Stroke Association.

The guidelines issued Wednesday cover acute ischemic stroke, the most common type of stroke, one that is caused by a blood clot that reduces or stops blood flow to a portion of the brain. Stroke is the second-leading cause of death in the world and a leading cause of adult disability. It kills about 133,000 Americans every year, and occurs in the U.S. about once every 40 seconds.

The guidelines recommend more people should be considered to undergo a procedure called mechanical thrombectomy, in which doctors remove blood clots using a device threaded through a blood vessel. In addition, the guidelines suggest that more people should be considered eligible for a clot-dissolving IV medication called alteplase.

Some patients may now have mechanical clot removal up to 24 hours after symptoms begin. The limit used to be six hours, but new research showed that some carefully selected patients may benefit even after an extended amount of time.

“This is going to make a huge, huge difference in stroke care,” said Dr. William J. Powers, guidelines writing group chair and chair of neurology at the University of North Carolina School of Medicine in Chapel Hill.

The clot retrieval procedure requires a physician to thread a catheter through an artery, using a clot-grabbing device within it to reach and remove the clot.

Patients may qualify for the procedure if they have a blood clot in a large artery inside the head supplying part of the brain. This type of clot may not respond well to IV medication alone, can cause serious complications such as brain swelling, and can lead to considerable disability or death, said Dr. José Biller, a guidelines author and chair of neurology at Loyola University Chicago Stritch School of Medicine in Illinois.

“Removing blood clots from large arteries can mean the difference between stroke survivors being independent versus being dependent on others, which makes a big difference in their quality of life,” Biller said.

Up to 20 percent of all ischemic stroke patients are currently eligible for clot removal, Biller said, a number he expects to grow under the new guidelines and with further research.

Mechanical clot removal was first recommended in 2015, and large hospitals offering specialized stroke care are staffed and equipped to perform the procedure, Powers said. Expanding the window of eligibility will require more regionalized, coordinated approaches to stroke care, he said.

Alteplase was approved to treat ischemic stroke in 1996 and remains the only medication approved by the FDA to dissolve clots. Alteplase is in a class of drugs known as tissue plasminogen activators (or tPA). It has been proven to decrease disability when given promptly.

The guidelines relax the “very, very rigid” guidelines established when alteplase was first used, Powers said.

“The way we look at alteplase used to be green and red,” he said. “Green go, red stop. Now we’ve taken some of the reds and made them yellow.” Previously, some patients who had milder strokes, recent surgery or spinal tap were not eligible, Powers said.

The guidelines also recommend video consultation to hospitals without stroke experts so doctors can give alteplase quickly. Ideally, hospitals should work faster than the current 60-minute standard for IV treatment, with a goal of treating at least half of patients within 45 minutes, according to the guidelines. Video consultation, or telemedicine, also can help hospitals determine which patients qualify for mechanical clot removal.

The new guidelines were published in the American Heart Association’s journal Stroke and announced at the American Stroke Association’s International Stroke Conference. Based on a review of more than 400 research studies, the guidelines replace the 2013 guidelines and all subsequent updates, Biller said.

The guidelines will hopefully increase and harmonize care in the U.S. and all over the world, Biller said.

For the public, the most important message remains recognizing the signs and symptoms of stroke and calling 911 immediately, Powers said. Stroke patients do better the faster they get treatment, he said.

“You shouldn’t make the decision about whether you’re having a stroke, and you shouldn’t wait around to see if it goes away,” he said. “Time matters. If you can get to the hospital even 15 minutes earlier, it really matters.”

Getting help quickly paid off for Terry Summers of Kansas City, Missouri, after his recent stroke.

In August 2017, he started slumping to one side and his speech suddenly became garbled. The 61-year-old attorney’s son, Sean, immediately recognized the stroke warning signs and called 911.

Treatment with alteplase began minutes after the symptoms started, and continued with mechanical clot removal at a nearby hospital. Summers was feeling better the next morning, and two weeks later he was back at work. Today he has occasional headaches and slight weakness on his left side, but no other lingering effects of the stroke.

Awareness helped – Sean’s mother is a stroke nurse who had drilled the signs of stroke into his head, Summers said. And, of course, taking immediate action to get the proper treatment was also crucial.

“I wouldn’t have called 911,” said Summers, who is glad his son was there to do it. “Timing has everything to do with the fact that I’m in one piece.”
Commentary from Dr. William J. Powers: Three Things Everyone Should Know About Stroke 

Science News: Stroke guidelines information for professionals

If you have questions or comments about this story, please email
American Heart Association News Stories

American Heart Association News covers heart disease, stroke and related health issues. Not all views expressed in American Heart Association News stories reflect the official position of the 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.

Sunday, March 4, 2018

An Ode to Caregivers


Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

Due to personal constraints (nothing bad) I have been posting a new article every two weeks instead of weekly. The plan is to go back to weekly postings on March 12th.
The following is from the StrokeNet Newsletter:
Making Stroke Recovery Possible

by Deb Theriault
Senior Contributing Writer and
Information Resources Administrator

Caregiver (care-giv-er/ noun: a person who provides direct care) Source: Meriam-Webster Dictionary

Is there a job out there that is more underestimated and more personally difficult, yet more essential, than that of the caregiver? Probably not. The caregiver function is largely swept under the rug, as society looks the other way and collectively says “there, but for the grace of God, go I”.

On one hand, people can dismiss how difficult a caregiver’s job is, while, on the other hand, fear that sometime in the future they, too, will either have to become a caregiver for someone, or rely upon one to care for themselves. Why is the caregiver function so undervalued and, often, misunderstood? Well, it’s time that we give caregivers their due and then some.

Simply put, caregivers make it possible for others to go on living (literally), as well as to live more comfortably and with dignity. To do this, caregivers assist with hygiene and daily-living activities that cover a very wide spectrum.

On one end, they may make meals, housekeep, assure that medications are taken, take their charges to doctor and therapy appointments, shop for their food and sundries, take them to church or other social activities, and, often, provide their charge with companionship.

On the other end, in addition to many of the above functions, they may have to hand-feed their charge, wash / bathe the person, turn them over in bed throughout the day and night, and tend to their most intimate of toilet functions. This is a huge range of responsibilities.

It’s worth noting that some caregivers are actually paid to do their jobs, but most people rely on un-paid caregivers: spouses, relatives, even friends who step up and do the right thing by helping out a dependent adult, or child, in need. To complicate things, the caregiver often has other job or family responsibilities, which leaves little time for themselves and their own personal needs. No matter how well-intentioned, it’s unrealistic to expect such super-human output of anyone. No wonder “caregiver burnout” is such a huge problem.

Let’s stop here for a moment and recognize that even “commercial” caregivers need to be commended. The caregiver-for-hire needs to enjoy taking care of people, or get some sort of satisfaction from helping others out, otherwise they wouldn’t be able to do their jobs effectively. But, even though they get paid for their services, they can still experience the same emotional fallout as unpaid caregivers. This is especially true if they bond with their patient and the patient declines physically or emotionally, and /or becomes more difficult to care for.

Also, (and I hate to mention this) I feel an obligation to shine a light on the elephant in the room. Unfortunately, because caregiving can be so backbreaking, there is an underbelly to the caregiving function. Sadly, there are caregivers out there who are not so kind, and not so competent (both paid and un-paid). Over the years, I’ve heard of a few.

If a caregiver truly doesn’t want to be a caregiver, they can become surly and resentful when discharging their caregiving duties. Worse yet, they can become less careful, and less vigilant, with their charge, which can cause them to overlook changes in their patient’s health status and needs. They can also make the patient feel fearful or uncomfortable, not to mention, put them in physical danger.

The caregiver then becomes a “I-could-care-less-giver,” a lose / lose situation for everyone involved. This is an extreme case, of course, but it does happen. More often than not, the hapless caregiver simply becomes overwhelmed and exhausted, which can make them a bit careless or take longer to do their job.

From a personal standpoint, I wish I had a workable solution to caregiver burnout, but I don’t. I do know that while it’s not a solution to burnout, caregiver “respite” can help ease things a bit. There are caregiver respite services available in many cities and towns around the U.S., but these services aren’t always obvious; you have to work to find them.

Many times, churches step in and find people from their congregation to volunteer respite time to caregivers. If I were a caregiver, I’d try to see whether my church has such a volunteer workforce. Sometimes, Senior Community Centers also offer similar caregiver respite services to their community, again relying upon volunteers. And, while these aren’t available everywhere, there are also organizations dedicated to helping veterans. Again, one has to do some research to locate them.

The last option is to hire a qualified, professional caregiver on an occasional basis, to give the permanent caregiver breathing room and to find some time for themselves. (Regardless of the route one takes, as a society, on the whole, we need to find better solutions to help our citizens who require caregiver services, as well to provide help to the caregivers themselves. I’ve said it before, and I’ll say it again: we can do better.)

With that, let’s hear it for the thousands of selfless, hard-working caregivers out there. They are true angels to those who need them. In this “hearts and flowers” month of February, I‘m sending them a HUGE “virtual” Valentine brimming with sincere gratitude, and many warm hugs and pats on the back, for the vital service they provide, and for the super-important role that they play in peoples’ lives.

I thank you, marvelous people, from the bottom of my heart. You’re more important than you’ll ever know.
Deb survived her third stroke in 2006. In addition to her work with the Stroke Network, Deb is Treasurer for the W. Pa. Division of the US Fencing Assoc., does community gardening in her neighborhood and is a professionally-trained artist who has been specializing in figure drawing for many years.
Copyright ©February 2018
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.