Retreat & Refresh Stroke Camp Blog: May 2019

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at
309-688-5450 or email info@strokecamp.org to request yours.

Subscriptions will be available for purchase and information will be inside your free box.

Show Me The Booster Box

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Continued from last week's article on Post-Stroke Depression.

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A Survivor’s Perspective

BY JON CASWELL

How did depression feel to you?

On April 3rd, I took a shower, had a cup of coffee, walked my dog, went to school, taught my 1st graders, came home, vegged out, ate supper, walked my dog and went to bed. On April 4th, I couldn’t do any of those things because I was in the ER and then ICU with a massive stroke at age 30.

I felt no hurt or pain in my body. It was silent, but the machines treating me made a lot of noise and terrified me. I just wanted to go home to my dog. UNREAL! I could not be having a stroke! After a month or so, I did go home, but I couldn’t drink or eat, couldn’t work, struggled to walk my dog and couldn’t sleep for fear of aspirating in my sleep.

I didn’t leave the stroke at the hospital or nursing home, and I certainly wasn’t Rachel when I got home again. I didn’t fit my life. I didn’t trust my body. My swallow didn’t work, and most of my body just felt dead. A stroke is a brain attack, they told me. I lost almost 2 million brain cells for every minute I stroked. And I certainly felt fuzzy. There were things that didn’t occur to me to do, things I had done my whole life — like walk my dog or do crossword puzzles, and I felt horrible when I forgot to walk her or couldn’t find words in my head for the puzzles. My mind was different, and I wasn’t in control.

And I couldn’t eat or drink. I’d never given a thought to the gift of being able to handle these basic needs, ever. But when it was gone, I lost my humanity and I didn’t want to exist. But I had no words for myself, or anyone else, about ME. I couldn’t think, feel, act or behave as I had on April 3rd. I was gone. Everything that I took for granted, and everything I did as Rachel, was gone.

I looked pretty normal on the outside — apart from the circus freak show act I saw in my twisted face. My brain didn’t work right on the inside. I could stroke out at any second. I had no control. Fear paralyzed me. I was safe at my appointments with my doctors. But at home, I just wanted to stay in bed. And then I just wanted to stay asleep and not wake up. That’s the truth.

These words were not in my head or coming out my mouth, but that was my reality. You know in the winter when you pile blanket after blanket on top of you at night to keep warm? The weight of the blankets presses you down into your bed. You are kinda cozy and warm but also increasingly unmotivated to move. You just stay under covers and after a while you are so sluggish you cannot move. I felt like that — not really sad or in pain, but not active and increasingly heavy and unable to move. I didn’t see a point to moving. And moving wasn’t easy. So I stayed under covers where I was safe.

What do you want your loved ones and friends to understand about what it’s like to live with depression after stroke?

When I was six months out from my stroke, I sent a TOP 10 LIST OF BENEFITS TO HAVING A STROKE AT 30 to David Letterman. For example: “Having a stroke where you lose your swallow is a painless and easy way to drop 20 pounds in 15 days!” I was finding a positive from my stroke. A producer wrote me back, thanking me for my entry, giving sympathy on my suffering and advising me to enter again with a less personal, more neutral subject.

They didn’t get it or me. It was raw and dark material. I was raw.

So here are my TOP 10 THINGS I WANT FRIENDS AND FAMILY OF STROKE SURVIVORS TO KNOW ABOUT POST-STROKE DEPRESSION ... from someone who knows.

10: I don’t have the words to tell you what’s wrong. I really don’t and I feel bad about it.

9: I’m not in control and I’m confused.

8: I feel like a burden. I was independent. I’m not now and it makes me sad.

7: I don’t know what would help me feel better. But keep loving me.

6: I feel unlovable. I don’t love myself. Touch heals. Hug me.

5: I don’t recognize myself in the mirror.

4: I am working harder than you can imagine, at everything.

3: Are you afraid of me or are you afraid of having your own stroke? Stroke is scary. But I am not scary. Stay near.

2: Life can’t go back to the way it was and neither can I. I’m changed. I didn’t choose to change. I don’t want to change. I can’t deal with any more change.

1: I didn’t survive a stroke to be miserable. I can be magnificent. But I need help and I need HOPE!

Rachel enjoys a playful moment with her son Jason

It hurts to remember how depressed I was for a long time after my stroke. Fourteen years post-stroke, loving her life, this Proud Stroke Survivor is brought to tears, humbled forever by memories of me then! The depression was 24/7. It is not every day now. The depression no longer renders me useless. I know the depression. It is a part of me and we are friends.

I start my day with coffee and gratitude for the ability to swallow, my kitchen, my dog and my life. As my friend Priscilla taught me, “I’m too blessed to be depressed.”

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke depression may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.

Sunday, May 19, 2019

Helping Others Understand: Post-Stroke Depression

Show Me The Booster Box

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The best way to read this article on a cell phone is to hold your device horizontal (as if the longest side is on your lap).
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Helping Others Understand:

Post-Stroke Depression
strokeconnection.org

BY JON CASWELL

Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.

Depression is common after stroke, affecting an estimated one-third to two-thirds of all survivors. Post-stroke depression (PSD) can occur on a continuum, from mild symptoms, often referred to as adjustment-related depression, to clinical depression, also known as major depressive disorder. In the early phases of stroke recovery, a reactive or adjustment-related depression can present as the survivor begins to come to terms with how the stroke might change their life. Chronic depression, (i.e., major depressive disorder) most often occurs when survivors return home and is often related to quality-of-life experience. “Post-stroke depression requires appropriate assessment. It’s essential to spend time with the stroke survivor to accurately evaluate the individual neurological and other factors,” said Kimberly McGuire, Ph.D., ABPP, clinical psychologist at Kessler Institute of Rehabilitation. “Typically, what we see in the acute rehabilitation setting is a combination of both the neurological changes that have occurred as the result of the stroke and the patient’s awareness of his or her limitations.”

Recognizing the signs of depression

The symptoms of post-stroke depression may vary and change over time, but generally patients and families should watch for:

Persistent sad, anxious or “empty” mood
Depressed mood; loss of interest/pleasure
Sleep disturbance
Decreased motivation
Flattening of affect
Feelings of hopelessness, pessimism
Feelings of guilt, worthlessness, helplessness (feeling like a burden)
Decreased energy, fatigue, being “slowed down”
Difficulty concentrating, remembering, making decisions
Appetite disturbance
Thoughts of death or suicide

When five or more of the above symptoms persist for two or more weeks, a survivor may be experiencing post-stroke depression.

The consequences of untreated PSD include prolonged hospitalization, difficulty with social integration and potentially limited functional recovery. Therefore, it is important to identify and treat PSD as soon as possible.

Understanding how to help

A survivor’s depression can significantly impact family and caregivers. “In my clinical experience, family and friends often develop a sense of helplessness when the survivor’s interest and motivation are impacted negatively,” said McGuire. “The family may begin to feel like they can’t do anything to help this formerly independent and strong-willed person to get better. It’s very difficult for everyone involved to adjust to the situation,” explained McGuire. “However, the number one thing survivors want their families and friends to understand is that they are still the same person inside. And that they want to be treated with the same level of respect they had prior to the stroke. In particular, they don’t want to be infantilized or treated like a child.”

Ways in which family and friends can show their support and understanding include:

Be patient.
Don’t finish their sentences.
Talk to them, not at them.
Maintain eye contact.

“Interacting with a loved one who is experiencing depression requires patience, respect and simply slowing down, as well as having to repeat yourself without irritation,” McGuire said. “Recognize that the survivor is likely to be experiencing a lot of fatigue, especially in the acute phase of recovery. Overall, it is important for family members to communicate that they believe the survivor is the same person despite the challenges or limitations they now face.”

Dr. Kimberly McGuire

McGuire suggests that caregivers and family members can benefit from counseling, particularly if they are taking on additional roles and are feeling overwhelmed with adjusting to the new normal. “If the survivor is feeling misunderstood, then I would urge both survivor and caregiver to consider a few sessions of family therapy,” McGuire said. “It doesn’t usually need to be ongoing, only enough to understand the process of stroke recovery, gain information and talk about some of the strategies that can be helpful.”

Aphasia can create additional challenges for survivors with post-stroke depression. According to McGuire, different types of aphasia require different approaches to care and treatment. For example, if a stroke survivor is coping with expressive aphasia — the loss of the ability to produce language — the individual understands what is being said yet is often unable to produce a coherent verbal response. The most productive approach in these situations is to structure inquiries and dialogue that require only a yes/no response, such as, “Are you feeling sad today?” rather than “How are you feeling?” This approach allows the stroke survivor to respond by nodding their head, signaling thumbs up or down, using yes/no cards or writing an answer on a piece of paper.

Receptive aphasia presents different challenges as the stroke survivor has difficulty in understanding verbal or written information. “When dealing with receptive aphasia, we teach families to observe the survivor’s behaviors, including sleep patterns, eye contact when interacting with others, tearfulness, agitation, and/or engagement in therapies and other activities,” explained McGuire. “Their observations along with assessments by the clinical team can help to determine if the individual is experiencing post-stroke depression or if other factors are at play and what treatment and strategies to pursue.”

Both survivor and caregiver support groups can also be helpful because of the input from others who have walked this path. “I’m a huge advocate of support groups,” McGuire said. “In scientific literature, support is often cited as the number one predictor of positive progress. At Kessler Institute, for example, we run both inpatient and outpatient support groups for survivors and families/caregivers. Participants consistently express how important the shared information, encouragement and empowerment is to their own recovery. It’s a very productive experience, one that helps to ‘normalize’ life ahead. Knowing that you are not alone — that others are going through what you are going through goes a long way in coping effectively.”

McGuire emphasized two crucial points for caregivers to understand. “First, post-stroke depression is real. It is not that the survivor is being lazy or unmotivated. Second, PSD needs to be treated, and typically that is with a combination of medication and individual or group therapy. Without treatment, the survivor may face prolonged hospitalizations or rehospitalizations. It can also limit the ultimate level of functional recovery and definitely compromises the survivor’s social integration.”

...Continued next week
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Life After Stroke - You Need To Know

Show Me The Booster Box

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The following link will take you to a guide for stroke patients and their caregivers. It is a very comprehensive document produced by the American Stroke Association. It describes what a stroke is, what to expect, what to do, preventing another, and much more.

I noticed that on my PC desktop the link opened the document without downloading it, but when I used my Android cell phone, it downloaded a 4.7 megabyte .pdf file to my download folder and automatically opened it with my default .pdf browser app (Amazon Kindle). Other devices may differ.

A GUIDE FOR PATIENTS

AND CAREGIVERS

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Sunday, May 12, 2019

Olympic great Michael Johnson - Stroke

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This article is from a recent AHA newsletter: https://www.heart.org.
Mr. Michael Johnson and AHA's Nancy Brown want you to think fast, and we here at United Stroke Alliance (not affiliated with AHA, but have the same objectives concerning stroke) have always promoted FAST through our 5th grade education program, major league baseball program (Strike Out Stroke) and our nation wide weekend retreats for stroke survivors and caregivers (Retreat & Refresh Stroke Camp). We have noticed that while people understand the symptoms described in the acronyms F.A.S.T. they are not responding quick enough to the T - Time acronym. In an effort to promote the seriousness of time we are adding a little more to make the acronyms spell B.E.F.A.S.T.E.R.

These two our stroke teams are noticing:
B - Balance (Sudden loss of balance)
E - Eyes (Sudden blurry or loss of vision)

The next four you will learn from Nancy Brown's article.
F - Face
A - Arms
S - Speech
T - Time

We think more emphasis is needed here:
E.R. - Emergency Room
(Get to the ER by ambulance they know what to do FASTER!)

We are finding that many want to drive themselves, or be driven by family members or friends, to the hospital. Many think waiting for an ambulance is a waste of time, but it is not. They can provide help and diagnosis on the way, alert the hospital to have a stroke team ready and waiting, safely drive a lot faster than you should and get through traffic a lot faster. Please, please call for an ambulance.
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Olympic great Michael Johnson wants you to think F.A.S.T.

By Nancy Brown, American Heart Association CEO

Track legend Michael Johnson was slowed by a stroke in 2018.

Michael Johnson's quick reaction to his stroke was a big reason for his stellar recovery. AHA CEO Nancy Brown shares Michael’s story in her latest column.

When you think of track and field legend Michael Johnson, several things probably come to mind.
There's Olympic greatness, as evidenced by his four gold medals.

There's the flair he showed at the 1996 Games in Atlanta, wearing gold shoes on his way to a world record at 200 meters and an Olympic record in the 400 meters.

And there's the nickname he earned for being so dominant for so long: "Superman."

But if searching for a single word to describe all of the above, a fitting label would be "fast."

Hold that thought.

May is American Stroke Month, a time to pay closer attention to the No. 5 killer of Americans and a leading cause of adult disability.

My organization – the American Heart Association, which includes the American Stroke Association – uses the occasion to boost awareness of the warning signs of a stroke. If you see someone experiencing face drooping, arm weakness or speech difficulty, then it's time to call 911. The acronym that helps you remember this is F.A.S.T.

A speedy response can change the outcome. The sooner care is given, the better the recovery chances. The phrase doctors often use is "time lost can be brain lost."

Here's how these threads tie together: Johnson recently became a stroke survivor.

On Aug. 31, 2018, after a workout at his home, Johnson's left side became weak. Instead of viewing himself as invincible, he sought immediate treatment. Doctors told him that his quick response is a key reason for his nearly full recovery.

Johnson is sharing his story because he understands the many ways it can resonate. The most profound is perhaps the most obvious: Connecting this fast guy with F.A.S.T. offers another way to remember this potentially lifesaving information.

"I've known for a very long time that I have the ability to impact other people with my platform and what I've accomplished," Johnson said. "So this being another wrinkle in the story of my life and being a part of who I am, it wouldn't seem normal for me not to share this and try to use it where there needs to be more awareness about prevention and what to do if you are so unfortunate to have a stroke."

Johnson's tale began following a workout at his home in Malibu, California. His left foot felt strange, then his left arm tingled. When it twitched, he began seeking answers.

At the UCLA Medical Center in Santa Monica, an MRI revealed that a blood clot had settled into the base of his brain on the right side, preventing blood flow long enough to cause damage, then dissolved. What remained were the questions of if, when and how much he'd recover.

Johnson's problems were mostly with his arms and legs. He had to rest for two days before beginning rehab. With his speech and mind unharmed, he spent his downtime pondering questions such as:
"What's next? Could it be that I'm never going to walk again?"
"I'm 50 years old, I'm in great shape, I'm doing all the right things. How did I have a stroke? Why did I have a stroke?"
"OK, what was I doing? What did I do that day? Did I cause this?"
"I can't get dressed by myself, I can't go to the bathroom by myself. … Is this my future? Is this the rest of my life?"

Rehab began with Johnson walking around his hospital floor with the aid of a physical therapist and a walker. Johnson realized they went about 200 meters.

His record-shattering 200-meter race in Atlanta lasted 19.32 seconds. This trip took about 10 minutes.

Yet Johnson came away encouraged. For someone whose career focus was improving by tenths of a second, the incremental improvements during that outing gave him confidence that he'd recover.

Six weeks later, his wife could hardly detect a limp. By February, Johnson considered his stride reasonably close to where it was pre-stroke.

Some numbness lingers in his left hand and left foot. Feeling may never return to those spots.

Another unknown is the source of his stroke. Extensive testing never found a cause. His stroke was thus labeled "cryptogenic," which happens in one of every three strokes.

Johnson isn't worried about another stroke. He's controlling what he can, which means following doctor's orders such as continuing to exercise, eating a healthy diet and trying to reduce stress.

"I've been fortunate to always have been in a really good life and I enjoy life," he said. "I get to do the things that I enjoy and be around the people that I want to be around and do the kind of work that brings me joy."

These days – and especially this month – his joy also comes from spreading the word that anyone can have a stroke, and from sharing the warning signs.

In case you're wondering, Johnson didn't know the acronym before his ordeal. Once he learned it, he couldn't help but smile and laugh at how perfect of a pitchman he is for F.A.S.T.

"It's consistent with who I am," he said.

A version of this column also appeared on Thrive Global.

If you have questions or comments about this story, please email editor@heart.org.

If you have questions or comments about this story, please email editor@heart.org.

To see a great video of his experience go to and scroll to the bottom of:

https://www.heart.org/en/news/2019/05/06/olympic-great-michael-johnson-wants-you-to-think-fast

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.

HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.

Monday, May 6, 2019

Sleep Troubles and Stroke

Show Me The Booster Box

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