Retreat & Refresh Stroke Camp Blog: October 2018

United Stroke Alliance in partnership with Medtronic is launching 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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http://www.strokenetwork.org/

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The following is from the now discontinued StrokeNetNewsletter first posted in their August 2014 edition. Being a caregiver is one of the most demanding jobs there is. With the holidays coming up that extra stress is added to their already demanding tasks.

Also, today, Oct 29, 2018 is World Stroke Day. Here are some links from the USNews internet site that may interest you.

https://health.usnews.com/health-care/for-better/articles/2018-10-29/stroke-warning-signs-treatments-and-prevention
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Caregiver Appreciation Day

By David Wasielewski

This past month, our stroke support group held a caregiver appreciation day. This was an opportunity for us, as survivors, to acknowledge the essential support we receive from our caregivers, be they spouses, family members or other personal assistants. Rather than focus on survivor stories and conversations we turned the focus to those who care for us.

We all know and understood our strokes from the survivor perspective. This session was an opportunity for us all to better understand how our caregivers were affected by our stroke. During early recovery in the hospital we, as survivors, find ourselves to be the center of attention. Our world centers on us, our survival and recovery. The universe revolves around our hospital bed, as it should. Doctors, nurses and therapists are paid to attend to our every need regardless of our attitude.

It’s easy to become lost within ourselves and forget about the real world. As we adjust to our post stroke selves, everyone who knows us is making similar adjustments. One challenge for survivors in recovery is to recognize and continue to keep in mind that having a stroke is not just about the survivor. One of my clearest recollections during struggles to recover was being confronted by my wife who was my primary caregiver.

As I ranted about how miserable, tired and frustrated I was she very clearly pointed out to me that “This is not only about you!!” At that point it hit me clearly that the stroke had also thrown her life into chaos. My stroke had forced her into an unexpected role and a routine that she was unprepared for and struggling to navigate. I have shared this realization with other survivors and most agree that this consideration has had a positive effect on how they move through their recovery. The caregivers that hear this advice can also understand that it is OK to explain their point of view in the situation.

Each caregiver at our session was asked to describe what had brought them to the group. These descriptions lent a very different, often unexpected perspective to each survivor’s story. Familiar survivor stories took on a new twist. Things might have been much more serious that we had been led to believe by the survivor. The survivor may not have been as cooperative in therapy or at home as we were told. The caring relationships between survivors and caregivers often became clear as they chided each other with funny stories about their struggles. It was interesting that in these serious and challenging situations we were all most able to relate to these humorous moments.

Caregivers shared how their conversations with doctors and therapists shaped their expectations for their post stroke lives. They also commented on how these expectations compared to the actual lives they now led. It became apparent how the caregivers had become the ‘invisible’ victims of our strokes. Their struggles were often secondary to the survivor. Given the opportunity to speak in this forum was our way of acknowledging and validating their reality.

As the caregivers relayed their experience several commonalities became clear. Was anyone prepared for what happened? No. Were the caregiver’s expectations realistic? Often not. Was the experience stressful, horrible, life altering? Absolutely! Are the strategies for recovery and moving on different? Yes, all are unique. Does anyone regret having done what they did in order to get to this point? No!

Everyone has gained a positive new perspective on their lives. How they view their daily routines is radically different. Their priorities have been altered. Surprisingly, as bad as these experiences were, most everyone agreed that the stroke had changed their perspective on life in mostly positive ways.

As a survivor and support group advocate I would encourage other groups to give their caregivers an opportunity to be recognized and validated. A day of appreciation is never wasted.

The following article details how caregiving can seriously affect the health of caregivers and the very real physical and emotional toll that caregiving has on a family:

~~http://hsd.luc.edu/newswire/news/stroke-caregivers-are-risk-depression~~
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RRSC Blog Editor Note: The preceding link from the original post is no longer available. I included a link below that may be of help to caregivers, helping them recognise depression symptoms and treatment:
https://www.caregiver.org/depression-and-caregiving
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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, October 21, 2018

Tips for Families: Communicating With a Stroke Survivor

Show Me The Booster Box

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http://strokeconnection.strokeassociation.org

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The following is from the October 2018 American Stroke Association Stroke Connection web site:

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Tips for Communicating: Different Types of Aphasia After Stroke

For families living with aphasia due to stroke

BY BETH CRAWFORD, MS, CCC-SLP

Companion piece to "Caring for a Survivor with Aphasia" in our Stroke Connection Fall 2016 issue.

Beth Crawford, MS, CCC-SLP

With a survivor with receptive aphasia

“Never assume that the person with receptive aphasia is comprehending your message,” Crawford said. Always verify they understand what you said by presenting your messages in a variety of ways -- writing, drawing, gesturing, looking at pictures, etc. For the person with aphasia it can be exhausting trying to keep up in a world full of words. Caregivers need to be sensitive to this fatigue, and recognize if they are not in an ideal state for comprehending language. Set the stage for successful communication by maintaining good eye contact, positioning yourself on the same level and offering a listening attitude. Dedicate some time to the interaction rather than adding to the pressure by rushing. “For someone with receptive aphasia, the actual words may not sink in, but these nonverbal cues (setting the stage, eye contact, a listening attitude) will send a clear message that you believe them to be a competent, intelligent communication partner,” she said.

With a survivor with expressive aphasia

When communicating with someone with expressive aphasia, never assume that you received the message that was intended. You have to go back and verify that you understood accurately. “You can do that in several ways, but most commonly you would try to restate their message using simple language or ask yes/no questions to verify that you understood with accuracy,” Crawford said. Accept communication in any form, and don’t fake understanding because you don’t want the survivor feel bad. Be honest when you hit a road block and ask for permission to take a break and come back to it later if you can’t think of any other way to facilitate that interaction. “But when you ask permission to take a break and come back later, make sure that you follow up on that.”

With a survivor with global aphasia

“With global aphasia, you have to continually remind yourself that verbal loss is not the same as cognitive loss,” Crawford said. “Even though they can’t always reveal it, they still can reason and use their judgment.” When communicating with a survivor with global aphasia, decrease distractions and pay attention to body language and facial expression; engage all of the senses when you’re trying to interact and communicate. “Don’t avoid interacting because it’s hard. Even if you can’t communicate specific messages all of the time, you can still achieve a social connection. Find ways to enjoy each other that don’t rely heavily on words. So you may listen to music or take walks, appreciate art, those kinds of nonlanguage activities.”
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Sunday, October 14, 2018

Yoga for Stroke Survivors

Show Me The Booster Box

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www.livingwordsofwisdom.com.

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The following is from an article written by Walt Kilcullen, a staff member of the Stroke Network's Newsletter which, unfortunately, has discontinued their monthly newsletters. This article was first posted in September 2011 and again in June 2014.

The StrokeNetwork itself still exists and is an excellent resource for stroke survivors and caregivers. you may join them at: http://www.strokenetwork.org/

If you have any questions about this article you may contact Walt at: at wkilcullenstrokenetwork.org
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Yoga for Stroke Survivors

By Walt Kilcullen

I started writing an article on fitness after a stroke and discovered there is a wealth of information out there giving great advice on keeping fit with exercise. I had almost completed the article when a member of my support group introduced me to adaptive yoga for people with disabilities. I began reading about this and realized that it would be better if I could see an adaptive yoga class in action. So last week, that is what I did.

The class was instructed by
Della Moses Walker who was
trained specifically to teach
adaptive yoga at the Wellness
and Enrichment Center in West
Orange, New Jersey.

Many of the participants were
stroke survivors. The emphasis was on the individual. The pace for progress was slow so that each individual could advance at his own pace.

Della emphasized the following:

Yoga is a mind body connection.
Yoga with meditation yields relaxation of the mind and body.
Breathing in yoga is an important element for relaxation and concentration.
Adaptive yoga is designed to fit individual ability.
Yoga and meditation can be done independently, but it is far more beneficial if they are done together.

John McClain then led the class
to meditation. We all spent
about fifteen minutes meditating
under John’s direction. He
showed us how meditation
relieves tension, helps you to
find peace, creates relaxation,
and puts your mind in a natural
state.

Two common problems for stroke survivors are balance and

weakness affecting an arm, a leg, or both. The yoga instructor

circulated and gave instruction to each participant as needed. Some

students were able to sit on the floor as a regular yoga class would

begin. Others were able to lie on a mat. Some were able to stand

holding on to the back of a chair, while others sat in chairs.

In yoga, there are many yoga poses (specific positions) that the

instructor uses. The goal is to improve balance, strength,

flexibility, mobility, and to create an environment of relaxation

through breathing techniques. Following are examples of exercises

for chair yoga taken from Shirley Marotta,

Chair Yoga

Forward Bend – eases tension in the upper

back and neck. Breathe in and out as you

bend forward. Let your head and arms hang

over your knees. Relax into the position and

hold for a few seconds and keep breathing.

Breathe in as you slowly come back to a

seated position.

Spiral Twist – increases circulation and
flexibility in the spine. Sit facing forward
placing your left hand on the outside of your
right knee. Place the opposite arm over the
back of the chair. Breathe in and breathe
out as you twist your body to the right.

Turn your head as well. Push against your knee with your hand. Breathe normally and hold that position. Release slowly and come back to facing forward. Repeat on the opposite side if you are able.

Side Stretch – increases flexibility of the spinal
column, improves respiration, and reduces
waistline.Sit facing forward with feet slightly
apart, breathe in, and raise your arms out to both
sides.

Breathe out and bend to the left, reaching toward the floor with your left hand and your right hand pointing toward the ceiling. Breathe in and come back to the starting position. Repeat with the right side.

Knee Squeeze – relaxes lower back, improves digestion and respiration. Breathe out and breathe in and put both hands around the front of your knee. Pull your left knee to your chest while holding in your breath. Lower your head to your knee and hold for a few seconds. Then release slowly while breathing out. Repeat on your right side.

Leg Lifts – strengthens legs and lower back, and
improves circulation to your legs and feet. Sit
and hold each side of the chair for balance.
Breathe out and breathe in as you lift
straightened left leg and flex your foot. Hold for
a few seconds and then slowly breathe out while
lowering your leg. Repeat with your right leg.

Sun Pose – improves circulation to your head,
massages internal organs, and limbers your
spine and hips. Sit back in the chair with legs
apart and arms by your side.

Breathe out completely then breathe in and
with a sweeping motion bring your arms up
over your head. Look up and stretch. Breathe
out while bending forward between your legs
and if possible, put your palms on the floor.

Slowly breathe in while rising back up with
your arms over your head again, then lower your arms to the side.

Although the above chair exercises are beneficial, they are no
substitute for adaptive yoga classes because the instructor will
pattern your exercises to meet your individual abilities and needs.
You can find out where you can participate in adaptive yoga
classes through the closest rehabilitation hospital. You may also see
if anyone in the local support group knows of such a program.

There are also two sources you may want to consider. The first is a
video called, Yoga: Renewal of Life (no longer available at this site), by the Rocky Mountain Stroke Center. Second is a book, Recovery Yoga: A Practical Guide For Chronically Ill, Injured, and Post Operative People by Sam Dworkis.

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The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

Sunday, October 7, 2018

Dear Angela: An Open Letter to My Former Self

Show Me The Booster Box

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