Sunday, February 26, 2017

A Nurse and a Stroke Survivor - Part 2

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.

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

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.”
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:

By Barb Polan
Contact Barb at

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.


November 2016


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.


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.

(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.


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.

                                                                                   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.
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