Sunday, April 21, 2019

Marylee's Top 10 Stroke Tips for New Caregivers


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a 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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This is a companion piece of last week's post. The following was posted on this blog seven years ago after Marylee was a caregiver for ten years (and still is for her husband today). I happened to run across it the same time I did last week's post, and I thought it would be helpful to repost it, too. If you remember from last week's post, Marylee is the Director and founder of Retreat & Refresh Stroke Camp. Her husband had a stroke in early 2000. As a result, through her and and her husband's experiences with post stroke daily life, she thought how beneficial it would be, to both the stroke survivor and the caregiver, to be able to spend a weekend outside the now new-normal daily routine. It all started in 2004, with friends and acquaintances, at a campground that had cabins and handicap-friendly facilities. From there it blossomed into 35 annual weekend camps organized throughout the United States, and is still growing. Over the past fifteen years these camps have given thousands of stroke survivors and their caregivers a much needed break, a much needed rest, and an uplift from their normal daily routine. Plus, they are just a whole lot of fun! 


Marylee probably could expand this list today, too.  After over fifteen years of caregiving, I'm sure she can. Maybe, some day I'll ask her about this one, too. If you think you can add more, let me know. 



I have been a caregiver for my husband, John,  who had a stroke over ten years ago, but recently, through unfortunate circumstances, I was reminded of the things a caregiver learns as they navigate the early years following a stroke.  This reminder came after my brother’s wife had a massive stroke.  While he was getting through the first few months, he leaned on me as the “stroke expert” asking questions almost daily. As a caregiver for my husband, John, I realized we were settled in a rhythm and I had forgotten all the ways that we adapted after his stroke.  I’ve worked with many stroke survivors and caregivers as executive director of Retreat & Refresh Stroke Camp, so decided to do my “Top Ten List” for new caregivers.  Although each stroke is different, whether it is one month or ten years post-stroke, these are some things I personally have found to be true.

  1. Routine is your new best friend.  Give your survivor adequate information about any changes as soon as possible.
  2. Don’t try to reason with a survivor having a melt down. They are simply not able to be rational in the moment. Remember it’s the stroke, not you that makes them angry or sad.
  3. Always, I said always, keep calm in a crisis. Deep breathe and count to 10 (or 100 if necessary).
  4. Don’t take the exit of friends and family personally.  It is their issue, not yours.
  5. Slow down and repeat things with great regularity. Look at your survivor when talking with them (whether or not they have aphasia, they may have memory and cognitive challenges that require more attention to the conversation). 
  6. Encourage your survivor to get as involved as possible in decisions involving their care or family situations.  They still need a voice and to feel they are a part of life’s decisions.
  7. Allow acceptance that some things will always remain your responsibility.  (Paying bills, managing medications, overseeing doctor’s appointments, meal planning, cooking, household tasks, communicating, etc.)
  8. Find your “new normal” and seek a few things that you both enjoy and then participate. (Go to the mall and walk or wheel around, get a bite to eat or a gourmet coffee, watch the people, then go home and rest.  Attend reasonably priced community theater, go to a park and watch the people as you feel the wind on your cheeks. Sit on the front porch rather than in the house, go to a support group, volunteer both of you or even independently to do something for someone else).
  9. Accept that it is unlikely you will ever have a normal “marital” or “family” disagreement that will be resolved in the moment. Things that need to be addressed or changed will better come through planned discussions, one topic at a time.
  10. Never ever give up because there can be progress even many years after a stroke.  The progress may not be dramatic, but it’s there.

I hope you find some of these tips helpful on your own personal journey following a loved one’s stroke.

Marylee Nunley, Executive Director, Retreat & Refresh Stroke Camp and wife of John Nunley, survivor since 2001.

Sunday, April 14, 2019

Stroke Specific Things I Wish I’d Known Sooner


www.strokecamp.org



http://www.unitedstrokealliance.org/


United Stroke Alliance in partnership with Medtronic launched a 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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The following was posted on this blog seven years ago. I happened to run across it last week and I thought it would be helpful to repost it. Marylee is the Director and founder of Retreat & Refresh Stroke Camp. Her husband had a stroke in early 2000. As a result, through her and and her husband's experiences with post stroke daily life, she thought how beneficial it would be, to both the stroke survivor and the caregiver, to be able to spend a weekend outside the now 
new-normal daily routine. It all started in 2004, with friends and acquaintances, at a campground that had cabins and handicap-friendly facilities. From there it blossomed into 35 annual weekend camps organized throughout the United States, and is still growing. Over the past fifteen years these camps have given thousands of stroke survivors and their caregivers a much needed break, a much needed rest, and an uplift from their normal daily routine. Plus whole lot of fun! 

Marylee probably could expand this list today after seven years of caregiving. Maybe, some day I'll ask her. If you think you can add more, let me know. 
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Stroke Specific Things I Wish I’d Known Sooner

by Marylee Nunley

v  Hearing early on (in a kind, gentle, and positive way) that this is a permanent condition, but still not to lose sight of great possibilities. To be informed that recovery takes lots of time and patience by all.

v  The brain is injured and it may take up to six months for it to heal and recover.  After that time, the patient will be working with the undamaged parts of the brain through a lengthy but rewarding relearning process.

v  Understanding that each time there is a new environment, the survivor may need to re-learn things (shower at home different from the hospital, bed not as convenient, meals served differently, etc.)

v  How to find the handbooks from www.strokenetwork.org  (online support group) or www.stroke.org (NSA) at the onset.  The internet and Facebook is full of things that help families understand the different parts of care and rehab that will be happening. 

v  Being given a list of stroke specific  terminology

v  Stroke survivors may seem to understand way more than they actually do. My impression was that if he heard it, he understood just like I did.  That couldn’t have been farther from the truth.  Receptive aphasia means that the person with the brain injury doesn’t hear and process the words the way they are spoken and may not understand what is said or completely misunderstand what is said.

v  Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.

v  More about the caregiver role and what will be expected once going home and about burnout.  No matter how much energy and commitment we have, there will be a time we’ll just get tired of the responsibility.

v  More about aphasia----look at the person, go very slowly, that even though they hear what you say, they may not fully understand.

v  Support groups—both survivors and caregivers need them.

v  What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life

v  Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on

v  Routine should become your best friend for awhile

v  ADL equipment, gadgets and gizmos.  There isn’t time for the medical community to provide all this information and they don’t have the means (financially, insurance runs out) short of funding of some sort of program following discharge.  Here is where support groups can help

v  Understanding Health Benefits can be a challenge and making friends with a good social worker, discharge planner, or the insurance billing clerk can’t hurt

v  Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests

Well, that's my list. Undoubtedly you will have other items 
that you've encountered. If you want, go ahead and share
them by leaving a comment. That way we all learn just that
much more.  

Sunday, April 7, 2019

After Stroke, Anxiety


www.strokecamp.org



http://www.unitedstrokealliance.org/


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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Depressed older woman

After stroke, anxiety is common in women

By American Heart Association News

Angie Read Doyal was unsure if she'd be the same after her stroke. So, when she felt ready to return to work after only seven weeks of intense physical, speech and occupational therapy, she was confident.

But that self-assurance quickly was undermined by severe anxiety, panic attacks and depression.

New research adds to the evidence that Doyal's experience is all too common.

A new study finds that one in four stroke survivors report experiencing moderate to severe anxiety two to eight weeks after their stroke, with incidence more common in women and those who are single, divorced or widowed.

"We believe there is a bi-directional relationship between stroke and anxiety," said the study's lead researcher Jennifer Beauchamp, a researcher at the University of Texas Health Institute for Stroke and Cerebrovascular Diseases in Houston. The findings were reported this week at the American Stroke Association's International Stroke Conference in Honolulu.

The researchers analyzed the health records of 194 ischemic stroke survivors. An ischemic stroke occurs when a blood vessel to the brain is obstructed, cutting off blood flow. It accounts for about 87 percent of the nearly 800,000 strokes that occur in the United States each year.

All of the survivors had been screened for generalized anxiety disorder at a follow-up visit at a stroke clinic. Beauchamp and her team found that 32 percent of women and 21 percent of men reported moderate to severe anxiety. The patients with this level of anxiety were significantly more likely to be single, divorced or widowed than those without moderate to severe anxiety.

Anxiety after a stroke may be due to a combination of psychosocial factors and biological changes to the brain caused by the stroke, said Dr. Nada El Husseini, a neurologist at Duke University Medical Center in Durham, North Carolina, who was not involved with the study. Having a history of anxiety or depression may also play a role, she said.

That was the case for Doyal, who was diagnosed with anxiety about 15 years before her stroke and had always easily managed it with medication. She also had a family history of depression.

But she'd never felt so overwhelmed until after her stroke.

"I felt like I had 10 pounds of bricks on my chest," she said. "I wasn't sleeping. I wasn't eating. I isolated myself. It was destroying my life."

Doctors tried one medication after another, and nothing helped.

"It was worse than the stroke itself," Doyal said. "I was afraid of my own shadow."

More research is needed to help women like Doyal recover after a stroke, said Beauchamp, adding that the patient's anxiety also can affect the caregivers.

El Husseini said as researchers look to identify the best way to treat stroke patients who experience anxiety, they also should "take into consideration the other conditions that stroke patients are predisposed to, including grief, depression, sleep disorders, post-stroke fatigue and post-traumatic stress disorder, and how they relate to anxiety."

Following her stroke in July 2017, Doyal, who was 46 at the time, had another the following April.

"I have had to fight like hell to get to a point where I feel comfortable most of the time," said Doyal, who sought treatment at an inpatient hospital program for anxiety and depression. "My anxiety is still there, but I am managing it. And luckily the depression is dormant. But I walk on egg shells. I know it can come back at any time."

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

Our Camp Year Begins With Pat's Story


www.strokecamp.org



http://www.unitedstrokealliance.org/


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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Pat's Story was originally posted on this blog in 2011. Since we are starting up our camps soon for the 2019 season, I thought this might be of interest to those of you who have been thinking of but have not yet attended one. Pat and Tony have been volunteers at many of our camps throughout the years until Pat had her stroke and then they took on the tasks of caregiver and survivor. They continued to serve on our board for several years after Pat's stroke until their life's demands needed priority. They still help today with one of our local fund raisers. Thank you Pat and Tony for your support.

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

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

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

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PATS’ STORY
  Told by her husband Tony

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

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

            I mentioned Stroke Camp a few times; this was started in 2004 by a member of our Stroke Support Group as a weekend get-a-way at a local Camp/Retreat Center. We had one camp the first year, then two the following year, and, after word got out about the Camp, four the next year with Stroke Survivors and Caregivers from seven States attending. After seeing how much impact the Camp had on Survivors, the Director decided to go Nationwide with the Camps. Pat and I were > on the Board of Directors and <volunteered> to work at the Camps . This year <2011> there are eighteen Camps scheduled in various States. We will be volunteering in Colorado and Texas and maybe Springfield, IL. These camps are all funded by local Hospitals or Fundraisers and donations. I urge anyone who has a loved one or friend that has suffered a Stroke to tell them about Camp. You can find out more information about Camp at our website: www.strokecamp.org

(Editor's Note: over the years, since 2004, we have grown tremendously developing and hosting over 30 camps a year throughout the nation, coast-to-coast, border-to-border. We foresee this trend continuing. Words enclosed in < > brackets are made by me to keep the article current.)