Sunday, February 26, 2017

Last week I posted an article on this blog about Teri Ackerson titled "A Nurse and a Stroke Survivor". Since then I have received an email from the American Stroke Association containing this video of Teri speaking about her experience. As you know, before her stroke she was a Stroke Coordinator at her local hospital. Because she acted FAST and was treated with the tPA clot busting drug she has very few deficits that can be caused by a stroke. In addition to being on the AHA’s Kansas City board of directors, Teri is also a member of the National Board of Directors of our newly formed United Stroke Alliance organization. Our Retreat & Refresh Stroke Camp, which is the parent of this blog, is now a division our new organization along with Strike Out Stroke and our 5th grade education program.
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By AMERICAN HEART ASSOCIATION NEWS
news.heart.org

If you will click on this link: Teri Ackerson Video you will be presented with her video.

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Sunday, February 19, 2017

A Nurse and a Stroke Survivor

Teri Ackerson is a stroke survivor. Before her stroke she was a Stroke Coordinator at her local hospital. In addition to being on the AHA’s Kansas City board of directors, Teri is also a member of the National Board of Directors of our United Stroke Alliance organization. Because she acted FAST and was treated with the tPA clot busting drug she has very few deficits that are caused by a stroke.-------------------------------------
By AMERICAN HEART ASSOCIATION NEWS
news.heart.org



Teri Ackerson vividly recalls the 1 a.m. call from a friend who was urgently trying to figure out whether someone was having a stroke.

As a nurse who has herself survived a stroke and now works to make sure people get proper stroke treatment, people who know Ackerson trust her expertise. And, thankfully, Ackerson was able to help early that morning by advising emergency treatment.

“You helped me save a life tonight; if it weren’t for you, I wouldn’t have known,” she recalls her friend saying.

Ackerson was recently honored with the American Heart Association’s Healthcare Volunteer of the Year award in Dallas. She’s passionate about stroke education, and is making a difference locally, nationally and even internationally advocating to help stroke patients get the best care.

Ackerson has worked with patients in Kansas City, Missouri, since 2009. But her dedication took on a new intensity after her own stroke three years ago.

“A stroke takes away your independence and it paralyzes you with fear,” said Ackerson, a critical care nurse who’s also on the AHA’s Kansas City board of directors and helps ensure healthcare professionals have the most up-to-date stroke research and education.

Her stroke happened while she was on a coffee run with her teenage son Parker.

She was treated with the clot-busting drug tPA, which improves blood flow to the brain following a stroke. Outpatient therapy followed for six months.

At the time, she was working as a stroke coordinator at a local hospital.

“I wish I could tell you that my stroke didn’t change how I practice medicine, but it’s a huge eye-opener when you’re on the other side of the door,” Ackerson said. “I advocated for patients in the throes of stroke much more than before. I became more aggressive with the emergency department professionals, so it wasn’t as easy to exclude patients from treatment. We pursued and asked and answered so our patients could get tPA if they needed it.”

All because she’d walked in their shoes.

She tells patients: “‘I’ve laid in this bed. I’m a stroke survivor too, and we’re going to get through this together.’”

At Saint Luke’s Hospital in Kansas City, Missouri, Ackerson now works with smaller rural hospitals on measures to get patients the best care fast.

“Patients will tell you, ‘OK, you saved my life, but where’s the quality of it?’” Ackerson said. “If we can correct how we treat on the front end, we can have them walking out of the hospital versus going through a skilled nursing facility.”

Ackerson recalls when she started feeling better.

“I started cooking a lot because I had to engage both of my hands. It was well past 11 at night, and I was making lemon-lavender cupcakes for the neighbors in my cul-de-sac,” she said.

The eggs, the flour, the ability to follow directions all came together. But would she remember the next day? That’s what she wanted to know.

She went to bed and was relieved when she woke up.

“Everything was pretty much still connected the next day,” said Ackerson, who continued her baking therapy. “My neighbors used to tease me: ‘You had a stroke and we’ve gained 10 pounds.’”

Ackerson feels fortunate that her recovery was relatively fast — so fast that she ran a marathon 26 days after her stroke. That’s not the case for all survivors. She once worked with a chemical engineer who spoke six languages but couldn’t use his right arm or speak after his stroke.

“The last two years my main focus has been on community education and working with research groups so we can affect outcomes and quality of life,” she said. “Sometimes because we know what research is proving to work best for patients, we forget about the quality of life they want to return to. Focusing on outcomes and quality of life brings the patient back to the center of care.”

Her stroke made a lasting impact on Parker, now a college student who volunteers to spread awareness with his mom.

“It doesn’t just happen to old people — it can happen to anyone,” he said. “I wish everyone knew the signs and symptoms of stroke, and that you can be treated.”
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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, February 12, 2017

Survivor’s Best Friend

Some of you may have been thinking of getting an Emotional Support Animal (ESA). I found some articles on the StrokeNetwork website that might be of interest to you. I noticed that Barb posts an animal related article each month on this site.

The following is from the website StrokeNetwork: http://www.strokenetwork.org
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By Barb Polan
Contact Barb at bpolan@strokenetwork.org

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 and has published a memoir.

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November 2016

Empathy

Among humans, emotional support is provided in a wide range of forms: the nodding of a head, a gentle touch from one person, a bear hug from another, or “I love you” from a friend as she says good-bye on the phone. The support that helps a person get through a challenging time can come from friends and/or relatives who provide physical comfort or even just listen to us tell our story.

From animals such as Emotional Support Animals, or even a regular pet, just their presence can provide solace - your cat curled up on your lap may comfort you as well as holding hands with the person seated next to you during a plane’s takeoff and landing.

Because dogs are known for their empathy, they are most often selected as ESA’s. My first dog ever was a black Lab/Newfoundland mix who, although not officially an ESA, sat in front of me and whimpered when I cried, while now, my ESA jumps next to me on the couch and cuddles against me. He especially likes to lick up the side of my neck, sometimes even lightly nipping my earlobes, which, somehow always warms my heart.

Whatever form it takes from either people or pets, emotional support comes from gestures of unconditional love, which is the ability to non-judgmentally respect and empathize with another living being.

Empathy is rare. Empaths are those people who probably were judged “too sensitive,” as they were growing up, people who take on another person’s grief as their own.

An empath would never say, “There, there, don’t cry,” or anything else that disallows another person’s feelings. Feelings, including sorrow, are valid ways of responding to situations, and are best respected by others.

Pets are particularly good at this – at accepting your sorrow and reacting with concern, not disapproval. And that’s what makes them effective Emotional Support Animals - they cry along with you.


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October 2016


Sample Letter for Your ESA

To qualify as a legitimate Emotional Support Animal (ESA), you - the animal’s owner - must have a letter from your mental health professional, preferably on his/her letterhead, saying that your pet provides emotional support for you.

Of course, this requirement means you must have some sort of mental health professional, which is common for stroke survivors because approximately half of us experience depression and/or an anxiety disorder. I started going to my psychotherapist for grief counseling, but got my dog to alleviate anxiety that I developed.

Not all mental health professionals have written a letter like this before, so in this month’s column, I will provide a copy of my (not copyrighted) letter, which can be used by your psychotherapist (or whoever provides your mental health care) verbatim:

To Whom It May Concern:
Barbara Polan is my patient and has been under my care since (date). I am intimately familiar with her history and with the functional limitations imposed by her emotional/mental health-related issue.

Due to this emotional disability, Ms. Polan has certain limitations coping with what would otherwise be considered normal, but significant day-to-day situations.

To help alleviate these challenges and to enhance her daily functionality, Ms. Polan has obtained an emotional support animal, specifically Turbo, a 25-pound male Lowchen. The presence of this animal is necessary for the emotional/mental health of Ms. Polan because its presence will mitigate the symptoms she is currently experiencing.

Sincerely,
(Mental Health Professional’s Name)

(State license number)

Although my letter includes my ESA’s name and description, that was added simply because of my concern that the reader asking for the documentation not wonder if I was using a different animal’s pet to get away with some sort of fraud – sneaking another, different animal into a place it was not allowed.

Because of that fear, I also bought a picture ID online, which can serve as additional confirmation, but that is absolutely not necessary. The ID also came with a printed certificate saying Turbo is an ESA, but that, I thought, was much less convincing than a photo ID. The hardest part of the process was finding a photo that did justice to his sweet little face to send to the company that produced the ID.

You may have also noted that the letter does not include what the patient’s specific need for the animal is, which is intended to protect the patient’s privacy. That means that my anxiety causing the need for my ESA is not mentioned in Turbo’s letter.

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September 2016
Caring for the Pet who Cares for You
Having a service, therapy or emotional support animal brings along the responsibility of caring for him/her as you would any pet: feeding, walking, vet visits, grooming as needed, and affection. How those responsibilities get fulfilled is dependent on both your disability and the animal.

Stroke survivors’ deficits span a range, but the animals’ fundamental needs are basically the same and could likely be provided by a stroke survivor with hemiparesis. A dog needs to be walked and fed, be taken outside to eliminate, and be taken to the vet and a groomer, as needed. The basic solution to fulfilling these requirements while dealing with any physical disability that interferes with pet care, is to have a well-trained dog – a dog who can be walked without pulling on a leash, who curls up quietly in the back seat of a car when being transported, and who does not jump on people or chase cars.

Let us start with taking the dog for a walk:
In my case, with hemiparesis that leaves me with only one usable hand, walking my ESA is out of the question because he tugs at the leash and, although I could hold the end of the leash with my 
functioning hand, I don’t have the balance to keep me from falling over, which is why I use a cane.

The last time I walked Turbo by myself, he was a puppy, and by the tenth time he tugged and I nearly fell over, I decided, “No more; it’s just too dangerous.”

Obedience school? Of course.
When we registered for the class, each of the owners told the trainer the breed of our dogs. I should have known I was in trouble when I said, “Lowchen,” and the trainer got a delighted look on her face, and responded, “I love Lowchens! They’re so naughty.”

And that’s the way it was: he had perfect behavior in class, but not at home. He would walk with a slack leash back and forth the length of the training barn, no matter who held the other end of the 
leash. At home, either in the house or outside, it was tug, tug, tug. Or tug, then me freezing in panic that I’d fall down.

I tried a harness that supposedly stopped the behavior, but – you guessed it – it didn’t stop Turbo. And the trainer instructed me what to do when he pulled, which was to stop, pivot, and then head the other direction. But she could never demonstrate it or have me practice because – you guessed it again – he always behaved in class. When I practiced at home, I couldn’t get it to work, but I couldn’t figure out why; not only did it not work – the act of pivoting made it even more likely I would fall.

I finally gave up, and for years now walks happen only with someone else holding his leash. When I’m home alone with him and he needs a walk, I take him out the back door and throw a ball for him. That’s the best I can do on the walking part of taking care of my dog.

Feeding is better: dry food scooped out of a bag that’s folded shut and wet food in a small plastic container with an aluminum cover I can manage to pull open one-handed (sometimes using my mouth too – ick!!). Filling the water dish is easy; it’s leaning over and putting it on the floor that’s sometimes messy.

Vet visits and going to be groomed have an issue similar to misbehaving while he walks – he insists on sitting on a lap in the car, which works only if there’s a second person in the car. And even if he would stay off my lap, I would not be able to get him out of the car and walk on a leash into the building anyway. Him sitting on my lap, not a seat, when I drive, is too dangerous for me to even try – I have enough trouble driving without a dog on my lap as I do it.

As for providing affection for a pet, loving a dog is as simple as taking pleasure in your pet’s presence, providing lots of physical contact, and making loving sounds – which is really just mirroring your dog’s affection for you. All stroke survivors can do that.

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                                                                                   Copyright @September 2016
                                                                                      The Stroke Network, Inc.
                                                                         P.O. Box 492 Abingdon, Maryland 21009
                                                                                         All rights reserved.

Sunday, February 5, 2017

Family Camp

We do around 28 stroke camps all over the country where we enrich the lives of about 2,000 stroke survivors and their caregivers every year. Each year one of  these camps is a family camp we do locally in Illinois where their children and grand children are invited also. Normally we don't include children at the camps because we have our hands full with the stroke survivors and giving the caregivers a chance to take it easy for a weekend. However, once a year we do because families are important to us also and they need a chance to see that their grownups can have fun too in spite of their limitations caused by stroke. Here are some photos taken at the Living Springs camp grounds in Lewistown, Illinois to give you just a little flavor of what camp is like.
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This is how we get stuff to and from camps
The Retreat & Refresh Stroke Camp Executive Director, Marylee, and Her Husband, John.
RRSC is now a division of United Stroke Alliance.



This is a drum circle
This is Susan who makes the drum circle fun




This is Anne, one of our terrific volunteers








This is Sarah the Family Camp Director




Stroke survivors at their discussion group

This is Pat and Tony, two more of our terrific volunteers







Loading up the People Mover

The People Mover


Weather permitting we make "smores"

On the right is Monica our best camp photographer

We have skits after meal time. They are crazy fun.
"Oh please, no more skits after mealtime."

We have mini seminars by medical professionals



Our first United Stroke Alliance CEO, Larry, on the right



Magic Night with professional magician









We were fortunate to have a fishing lake at the campsite



Then all that stuff goes back to the office the same way, or sometimes directly on to another camp


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Sunday, January 29, 2017

Am I crazy Or Just A Slow Learner?

Phil Bell is retired pastor from the University Baptist church in Macomb. He had a massive ischemic stroke January 4, 2012. He writes articles every couple of months in the local newspaper under the Street & Steeple section. That is a place where local pastors contribute every week in rotation. This article describes how he handled one of the limitations he faces with his stroke.
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By Phil Bell Retired pastor University Baptist Church

Yes, that’s what the title says, “Am I crazy Or Just a Slow Learner?” Most of us have asked that question at some point in our lives, maybe more than once!

Two days ago was Groundhog Day. I can’t tell you whether or not Punxsutawney Phil saw his shadow or not, because I’m writing this substantially prior to February 2nd. I am hoping he didn’t, for I’m ready for spring and saying good-bye to wearing coats and being cold. When I go out on February 2nd, I purposely, avoid casting a shadow, so Macomb Phil won’t be scared and return to his man cave to wait out six more weeks of winter! 

I would imagine, most of us have seen the movie, “Groundhog Day,” starring Bill Murray and Andie MacDowell. In it, Murray’s character, a TV weatherman, is sent to Gobbler’s Knob in Punxsutawney, Pennsylvania, to cover the groundhog’s emergence. Once there, he keeps living the exact same day over and over again! Every morning he awakens to Sonny and Cher’s “I Got You Babe” on his radio. As the experience continues, he uses “knowing what will come next” to his benefit. 

Too many of us seldom do that: learn by our experiences. I mean - Albert Einstein once said, “To do the same thing over and over again expecting different results is the meaning of insanity.” If true, some of us and one of the great men of God are, and was a little bit crazy. Some of us battle addictions and/or repeated bad decisions. Even the patriarch of the entire Jewish race, a man chosen and blessed by God, wasn’t exempt from this tendency of human nature! 

Chapter 12 of Genesis tells how there was a grievous famine in the land where Abram and his wife, Sarai were. Abram took them down into Egypt in search of food. In verses 11 – 13, we read, “And it came to pass, when he was come near to enter Egypt, that he said to his wife, ‘Behold now, I know that you are a fair woman to look upon. Therefore, it shall come to pass, when the Egyptians shall see you, that they shall say, “This is his wife; and they will kill me, but save you alive. Say, I pray you, that you are my sister; that it may be well with me for your sake and my soul shall live because of you.” 

Indeed, the Egyptians, including officials of Pharaoh’s court, took note of Sarai’s beauty. They reported her to Pharaoh and recommended he take her into the palace, which he did, adding her to his harem. He, then treated Abram well because of her, giving him much livestock and servants, making Abram a wealthy man. However, God sent plagues upon Pharaoh and his palace because he’d taken a married woman into his harem. 

Without telling us how Pharaoh knew the cause of the plagues, the passage tells us that he called Abram to him, upbraiding him by asking why he hadn’t truthfully named Sarai as his wife. He, then, promptly booted both Abram and Sarai out of his country! 

Almost unbelievably, Abram, now named Abraham, in chapter 20 of Genesis, is reported doing the exact same thing when they entered the land of King Abimelech with the same result, except, rather than plagues, the Lord closed the wombs of the king’s court. The effect of his deception was the same for Abraham, without being gifted by King Abimelech, just kicked out of his land! 

You’ve probably heard it said that experience is the best teacher. One of an extremely few TV pastors I watch is “Your Move With Andy Stanley,” broadcast in Macomb on the Up channel Sundays at 7:00 AM. He, rightly, points out that it is that simple experience that teaches us nothing! It is evaluated experience that teaches us. This is true in small matters, as well as, large ones. 

For me, I applied it to a problem I was having related to my stroke induced paralysis on my left side. Wheelchair bound, I cannot propel my chair with two hands. My MDH occupational therapist taught me to hold my left foot with my right and use them to guide my chair as I propel it with only my right hand. As you would imagine, they don’t work like a ship’s rudder when I’m backing. 

Each morning, I go into my bathroom to brush my teeth, shave, and wash my face. The first thing I do, once in the room, is go to a cabinet to retrieve my razors and shaving lotion. Upon backing away, I was, continually, backing into a closet door, leaving a mark each time. I thought about it and decided if I approached the cabinet at a more severe angle, when backing, I’d move into the open center of the room. It worked like a charm and has ever since! 

The point of this article is not that all repeated behaviors or routines are bad. In fact, some are quite good, and, even, Biblical! For instance, a daily devotional, in which we read God’s Word and pray is necessary for our spiritual health. Also, physical, occupational, and speech therapists, alike, teach a technique and have you practice it over and over again. 

My life is filled with routines! If you have been trying to give up a negative habit with no success, it may be because you’ve been trying to do it alone. Remember the words of Luke 1:37, where we read, “For with God nothing is impossible.” My suggestion is that you consult with your pastor about how to apply this to your situation. If you don’t have a pastor, any Macomb area one would be thrilled to hear from you, as would I! 

My point of this article is to say to all of us, “Never again is it necessary to ask ourselves, ‘Am I crazy or just a slow learner?!”
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Sunday, January 22, 2017

A Must Read - What Happens if the Caregiver Disappears

The following article is from the Stroke Network Newsletter web site: http://www.strokenetwork.org/ and is a followup to last weeks post, "A Survival Guide for Stroke Groups". If, after reading this, you think of anything else that might be important but got left out, please let us know and we'll make sure it gets included.
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By David Wasielewski

The importance of a personal backup plan

As we can all attest, strokes take folks by surprise. Survivors and their caregivers are caught off guard by the trauma and it’s often devastating after effects. Survivors and caregivers are tasked with accommodating the survivor’s acquired disabilities. Together they must quickly create new life routine based on the survivor’s needs. In many cases there is little time to plan this new life.

New daily routines are cobbled together on the fly and adjusted on the spot as required. Often, a family member or friend negotiates a new life routine with the survivor based on the survivor’s pre stroke personality. Many times the caregiver already has a good idea of what the survivor’s preferences might be. Food choices and mealtime routines are established along with new procedures for bathing and other personal care arrangements.

These can include the use of specific eating utensils and place settings, placement in particularly comfortable chairs in the house, the placement and storage of any aids such as canes and walkers so they are easily accessible. For survivors who can communicate effectively and retain cognitive functions these routines can be explained to anyone new.

However, for survivors with communication or cognitive difficulties this becomes a major challenge when the primary caregiver is forced from the picture. What happens if the primary caregiver gets sick and can no longer support the daily routines the team has established? A caregiver in my stroke group described just such a dilemma.

The woman and her husband, a severely aphasic stroke survivor with mobility issues, had managed to get along fairly well for the better part of a year after her husband’s stroke. Many years of marriage had left her knowing her husband’s preferred daily routines, food preferences and general likes and dislikes. Through their post stroke adventure they had also managed to establish a subtle but effective means of communication.

All was well until the wife suffered a fall on the frozen sidewalk this past winter. The injury left her with blood clots and required a five day stay for treatment in the hospital. Bad enough for her but how would her husband fare, being taken care of by a stranger? He had no way to effectively communicate with a stranger. How could he make his routines known to someone new?

Did the wife’s brief stay in the hospital jeopardize her husband’s ability to stay home? The situation alerted the wife and her husband to how fragile their living situation really was. Even a temporary stay in the hospital for treatment put the couple’s long term living situation at risk. The wife’s experiences led her to caution the group that we all need to have a Plan B for when things go awry.

We expect the stroke survivor might continue to have ongoing problems and make plans to deal with them (Plan A). But most of the members of the group reluctantly admitted that they had not seriously considered a plan B should anything happen to the primary caregiver.

A discussion among the group brought up the following possibilities. The primary caregiver needs to prepare for an emergency backup who would be available to care for the survivor in a crisis. That individual should be familiar with the survivor’s routines. These should include dressing, bathing, eating , personal care as well medication needs and schedules. The backup individual should spend time with the survivor / caregiver team to understand how to communicate with the survivor.

That individual needs to clearly understand what might be required if they are needed. An organized notebook with important care information should be readily available to the backup caregiver for reference purposes. It’s not easy to contemplate yet another crisis in an already complicated life but survivors and caregivers would be smart to prepare for such an event while they are able.
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David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.


Copyright @May 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

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Sunday, January 15, 2017

A Survival Guide for Support Groups

The following article is from the Stroke Network Newsletter web site: http://www.strokenetwork.org/

by David Wasielewski
Contact David at dwasielewski@strokenetwork.org

David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.
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What options are available if you lose your leader either temporarily or permanently? What if your support group losses its space? David explores these issues.

I’ve written the past about having a personal backup plan for the survivor / caregiver in case the situation changes. For example: What plan is in place to care for the survivor if the caregiver gets sick? Who takes over the caregiver duties? How fast can the backup be in place in case of emergency? Each individual is responsible for creating a personal backup plan.

(Blog Editor Note: next week I will post an article written by David describing the circumstances and importance of a personal backup plan for the caregiver.)

This article urges each support group to have a backup plan for their group in case circumstances change as well. Who takes the group lead if the current leader is unable to continue? Where does the group meet if their current space suddenly becomes unavailable? How are the group members to be contacted if changes occur? How do the members contact one another?

Our group recently worked through these challenges which arose in quick succession. The changes could easily have threatened to continuation of the group. The following are some suggestions that might help other groups.

Where does the group meet if their regular space becomes unavailable? The hospital we normally meet at announced they were to start renovations and our space would be unusable for several months. We had to find a new space in short order. Several of us began a search. Fortunately, we found a space at a nearby long term care facility. The director noted our plight and volunteered their newly built chapel as a space to meet for several hours each month.

It turned out to be an opportunity for the group to explore the facility. The director arranged for a tour and we had their head therapist join us to discuss long term care options and therapeutic options and the process of choosing a long term care facility. The visit provided an opportunity for the care facility to market its care and therapy services to the community. A win- win for both parties. A discussion of options in your community might be helpful in case a new space is required for your group.

What happens when the group leader needs to step away for a time or step down permanently? Our leader recently had to step away from the group in order to deal with pressing family obligations.

While each group normally has a leader the leadership duties should at least occasionally be shared among other members. The normal facilitator should be willing to step back at times while others take the leadership role. Perhaps leading a discussion or making a presentation on a topic of interest. Test the situation occasionally in order to assure that the group and the individual are comfortable with the possible transition if called upon.

Designating an unpopular leader or one unwilling to take over leadership can make it difficult for the group to remain intact through the transition. If the leadership transition had not been considered and tried out our group could have been left leaderless and in jeopardy. Fortunately, we were prepared, and the transition has so far been successful.

How is the group to be notified as the changes occur? Several folks in the group should have a complete list of contact information for all members. This should include emails and phone numbers for all members as well as a central contact for members to call for information. Our change of location would not have been successful if the members could not be notified of where to meet. Our group has a designated a ‘communication officer’ who is responsible for sending out meeting reminders and event notifications and maintaining up to date contact lists as members come and go.

Back-up plans are important as we all know in case situations change. Planning for these emergencies and changes is important so that individual survivors are taken care of and for support groups in order to assure that they continue to meet the needs of the survivor community. Imagine these changes for your group and if your group would survive. Planning will help insure that your group survives.


Copyright ©September 2016

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.
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Sunday, January 8, 2017

New Year. New Start. Start Right.

There's probably nothing new here that you haven't already heard many times. Consider this a refresher, a reminder of what could be the best way to improve your and your family's health. It has always been stressed that what we eat and how we exercise affects our health significantly, yet, it seems to be the the most difficult thing to get right. There are so many other tempting options, so many easier options that it makes it hard to get it right. But for the sake of our health we've got to try. Click on the red words in this article, too, for some more interesting tips and guides.
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Suggestions from the American Heart Association News: news.heart.org

It’s always good idea to take charge of your health, but there’s no time like the New Year.

To help you get started in 2017, several dietitians and health experts are offering up fresh approaches to keeping those resolutions.

“You’ve had time to think about who you want to be or what you want to accomplish and to plan for that change,” said Claudia Zapata, a registered dietitian, nutritionist and author of the blog Claudia Zapata Celebrating Health. “The first days of the year serves as the ideal springboard for putting your plan into action.”

Advice from Zapata and numerous other experts are distilled into the following tips for healthier eating habits and getting active:

Start with a clean slate: Clean and organize your pantry and fridge by chucking the overly processed junk foods. Replace those sugary cereals, cookies and crackers with hydrogenated oils, bottled salad dressings and refined grains like white rice and pasta. Instead, stock up on healthy granolas and unsalted nuts and seeds; a good olive and avocado oil; a variety of vinegars; and whole grains such as quinoa, farro, bulgur, millet and brown rice. Evidence of your clean slate will help: Post “before” and “after” photos on social media to inspire yourself and your friends.

Be truthful: It can be easy to fool yourself into thinking you’re eating healthy. Sure, there are carrots in that cake and peaches in that pie. But these foods don’t count toward the fruits and veggies you should eat every day.

Cook more: Develop seven to 10 go-to healthy recipes and the shopping lists you need for them. Print them out or take photos of them with your phone. Let family members pick favorites. Aim to try a new recipe once a week or once a month. Try tweaking favorites with different ingredients.

Reduce sodium: Experiment by seasoning food with herbs and spices such as basil, black pepper, cayenne, garlic, nutmeg, and ginger instead of salt.

Include more seeds. Many seeds offer heart-healthy fats, fiber, protein and important nutrients such as magnesium and potassium. Keep a shaker with unsalted sunflower seeds, flax seeds, in your refrigerator to sprinkle over soups, salads, yogurt and oatmeal.

Stop throwing away fiber. A good portion of a fruit or vegetable’s fiber content – important for digestive health, heart health and to reduce risk of some cancers – can be found in its peel. So wash the outside but don’t remove the peel from potatoes and apples when cooking. (Only do this with edible peels – not pineapple, orange and avocado peels.)

Read the ingredient list: Many people focus on the package front and the Nutrition Facts label. A quick shortcut if you’re confused: Start by looking for foods with nutritious ingredients listed first, such as whole grains, fruits or vegetables.

Graze, don’t gorge: If you’re at a party with a tempting spread, try a small sample rather than a full portion. Balance these tantalizing snacks with healthier options such as fresh-cut fruits and vegetables, or have a healthy snack before you go so you’re not hungry when you arrive.

Help make healthy food more available: If you have a school-age child, team up with other parents to advocate for healthier cafeteria foods. At home, always have a stock of ready-to-eat healthy snacks on hand so they’re easy to grab and go when hunger strikes.

Stay hydrated. Start the day with a glass of water first thing in the morning. Look for healthier options than sugar-sweetened beverages such as sparkling water. Make water tastier by adding fruit to your ice cubes.

Get moving. While many of us focus on diet with our resolutions, remember the importance of getting active, too. It doesn’t take a lot of exercise to improve your heart health, help lose weight and just feel better. But it can help to keep track of your exercise time. The American Heart Association recommends an hour and a half a week of moderate physical activity for most adults each week (or at least 75 minutes of vigorous activity each week or a mix of both). Kids should get about an hour a day.

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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, January 1, 2017

Having a Stroke Wasn’t Her Finish Line


by AMERICAN HEART ASSOCIATION NEWS
news.heart.org

I was 27 when I completed a road race during an ischemic stroke

I am extremely grateful bystanders recognized my symptoms as serious.



Emily Welbourn, stroke survivor and business development director for the American Heart Association/American Stroke Association in Tacoma.

BY EMILY WELBOURN

I was certain I’d been stabbed above my right eyebrow.

While running a 3.5-mile race in May 2013, I felt a sudden, piercing pain in my forehead at precisely the one-mile marker. I was 27 years old, in the best shape of my life, and had trained for this race for months. I couldn’t stop now. I squeezed my eyes shut to cope with the pain.

One foot in front of the other. By the time I crossed the finish line, my left hand no longer worked to open a water bottle. I fell while trying to stretch. Bystanders at the finish line noticed that one side of my face was drooping and took me to the medical tent in a wheelchair.

Fortunately, a physician was there to examine me and I’ll never forget his instant diagnosis: “Emily, you are having a stroke.”

At my age, no one ever expects to hear those words. But I barely had a moment to process them. All of a sudden I was being rushed to the hospital in an ambulance. Thanks to American Stroke Association guidelines, the hospital team was ready for me when I arrived.

Immediately a CT scan was performed, which confirmed an ischemic stroke, caused by a blood clot on the right side of my brain. Already a small portion of my brain tissue had died.

Looking back I am extremely grateful that bystanders at the finish line recognized my symptoms as something serious and that I got to the hospital quickly. When it comes to stroke, time is brain. Nearly two million brain cells die for every second that a stroke goes untreated.

Luckily for my type of stroke, there is a drug called tPA that can eliminate a clot and reverse the effects of a stroke, but it must be administered within a 3- to 4-hour window. I received tPA with one hour to spare.

In Washington, we have the Emergency Cardiac and Stroke System of Care. It is designed to speed up care and save lives. Calling 911 triggers the system – operators are trained to identify stroke and dispatch an ambulance, first responders notify the hospital while the patient is in transport, and the hospital stroke team is ready to diagnose and treat the patient upon arrival.

Washington stroke patients are receiving treatment faster: 48 minutes from the time they arrive at the hospital until the administration of tPA, according to the American Stroke Association, compared to 75 minutes in 2011 when the system went into effect. The goal was 60 minutes or less.

I can tell you that recovering from a stroke is challenging. It took many months of physical and occupational therapy to regain strength on my left side. I had to re-learn how to add and subtract. But today I am running again and even finished the Boston Marathon in April 2015.

I know not all stroke patients are as fortunate, but you can make a big difference. Know the warning signs of a stroke. Think F.A.S.T – F for face drooping; A for arm weakness; S for speech difficulty; and T for time to call 911.

Time is the number one factor in reducing the likelihood of death or disability from stroke. By knowing the warning signs and dialing 911, you can give someone the opportunity to thrive after a stroke and not just survive.

Emily Welbourn works as business development director for the American Heart Association/American Stroke Association in Tacoma. She previously was a volunteer with the organization.
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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, December 25, 2016

New Morning

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







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 BeyoncĂ© 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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Sunday, December 18, 2016

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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