Sunday, December 27, 2015
2015 Was the Best Ever
Sunday, December 20, 2015
Dancing for Stroke
"I'm only human. I bleed when I fall down.
I'm only human....I crash and I break down....
I can do it...I can do it...
I'll get through it...
I'm only human."
Those lyrics to pop artist Christina Perri's song "Human" resounded as a small group of stroke survivors and their caregiver spouses performed a dance routine for an audience of nearly 400 people gathered at an Arizona resort -- many consumed with emotion.
Some had chairs beside them in case they needed to grab hold for support, and one had a cane. Each danced their personal best.
The hushed crowd watched as the number concluded with the dancers gathering around a stroke survivor seated in a wheelchair. He slowly rose to his feet and danced a few steps with his wife.
The occasion was a black-tie fundraiser -- Dancing for Stroke, held in Chandler, Arizona in October. It came together in a few short months and raised $33,000 to add a second in the community, while also doing much more.
"We raised a lot of money, but we also helped get our story out," said Larry Bobko, who suffered a stroke at the age of 59, just weeks after retiring.
"This event played a role in helping people to see our abilities," Larry stressed. "We're always looking for our new normal. Well, we don't have to be sedentary. What you have to do is find your new normal and try and make that better."
The dinner dancing event had as its central element doctors and nurses competing as dancing couples, mirroring the "Dancing with the Stars" television show. It featured big screen video footage from past stroke camps that helped paint a portrait of the benefits.
The fundraiser, which can serve as a guide for other stroke camp communities, grew out of the overwhelming response to Dignity Health's sponsored stroke camp. So explained behavioral health Dr. Patrick Hernandez. He is care coordination manager for Dignity Health, which operates hospitals and other health care facilities in the region.
"By the time we held our second camp there were logistic issues; some people couldn't go," said Patrick, who also runs stroke support groups and is a
"It was the same at the third and fourth camps; people couldn't get into camp. We felt great that there was such a demand. We knew the camps were changing the lives of people, but we were saddened by the fact that the reality was we didn't have enough money for a second camp."
For Patrick, raising additional outside funds to support another stroke camp and other support group programs was an imperative, said Terri Lamb, a stroke camp volunteer and a volunteer in Dignity Health's stroke support groups. She played a major role in the planning and execution of the event.
Shawn Nerdahl, a ballroom dance instructor, who Terri had earlier brought on as a
Earlier in the year, Shawn, the founder of Arizona Ballroom Champions, had begun providing a free ballroom dance class to caregivers and stroke survivors with a range of ability levels. He recognized the class offered therapeutic value for survivors and their caregivers.
Patrick encouraged Terri and Shawn to seek out financial support from the foundation to cover the event's costs and helped in making the appeal.
The foundation saw the event "as something that not only could raise money for a stroke camp ... it actually has real benefits to people to do dance," said Rex Albright, development officer at the foundation. "It was kind of an easy sell."
The foundation has made a five-year commitment to Dancing for Stroke.
"It was a night of pride, a night of joy," Teri Bobko, Larry's wife and caregiver reflected.
The event helped raise awareness about stroke, said Patrick.
"It was a big advocacy flag to say to survivors and caregivers, 'We care about you. You mean something to us.' We want these camps to continue because we believe there is so much power in recovery. There is so much life after stroke ."
Similar events can be replicated in other communities, said those who participated.
Patrick encouraged Terri and Shawn to seek out financial support from the foundation to cover the event's costs and helped in making the appeal.
The foundation saw the event "as something that not only could raise money for a stroke camp ... it actually has real benefits to people to do dance," said Rex Albright, development officer at the foundation. "It was kind of an easy sell."
The foundation has made a five-year commitment to Dancing for Stroke.
"It was a night of pride, a night of joy," Teri Bobko, Larry's wife and caregiver reflected.
The event helped raise awareness about stroke, said Patrick.
"It was a big advocacy flag to say to survivors and caregivers, 'We care about you. You mean something to us.' We want these camps to continue because we believe there is so much power in recovery. There is so much life after stroke ."
Similar events can be replicated in other communities, said those who participated.
"There's nothing special about us; what we did others can do," said Larry.
Teri Bobko agreed, noting there are a variety of fundraisers that communities can explore.
"We all have talents," she said. "We just need to be brave enough to share them."
It's important to start with a good base of supporters, advised Patrick.
"Make an evaluation of the resources you have inyour community, and figure out if you have the need, are you meeting the needs of patients, stroke survivors and their families," he said. "It's about the numbers and the need."
And it's important to partner with community agencies, he added.
Larry Schaer, associate director of Retreat & Refresh Stroke Camp, who attended the event, said the key was stakeholders had a shared mission. "The survivors, caregivers, the volunteers, the foundation, the hospitals were all on the same page, each working together to provide support for survivors and caregivers and education in their communities," he stressed. "They put all the pieces together, and this is the result."
Teri Bobko agreed, noting there are a variety of fundraisers that communities can explore.
"We all have talents," she said. "We just need to be brave enough to share them."
It's important to start with a good base of supporters, advised Patrick.
"Make an evaluation of the resources you have inyour community, and figure out if you have the need, are you meeting the needs of patients, stroke survivors and their families," he said. "It's about the numbers and the need."
And it's important to partner with community agencies, he added.
Larry Schaer, associate director of Retreat & Refresh Stroke Camp, who attended the event, said the key was stakeholders had a shared mission. "The survivors, caregivers, the volunteers, the foundation, the hospitals were all on the same page, each working together to provide support for survivors and caregivers and education in their communities," he stressed. "They put all the pieces together, and this is the result."
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Sunday, December 13, 2015
Who and what is RRSC?
The following news article about Retreat & Refresh Stroke Camp was written March 10th, 2015 by Linda Zears of Courier Newspapers serving Central Illinois for decades with three publications - the Washington Courier, Morton Courier and Woodford Courier.
They take great pride in supporting the communities served by their publications, meeting the informational needs of their readers and promoting their local businesses to help them establish an ever more profitable bottom line.
They take great pride in supporting the communities served by their publications, meeting the informational needs of their readers and promoting their local businesses to help them establish an ever more profitable bottom line.
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by Linda Zears
“A stroke is an injury to the brain that can cause life altering changes,” says Marylee Nunley, Executive Director of Retreat and Refresh Stroke Camp, a local non-profit organization that provides, “A Camping Experience for Stroke Survivors and Their Caregivers.”
The weekend long experience is meant to refresh survivors, caregivers, and family members from the many challenges they face daily related to stroke, and to provide socialization, relaxation, education and support in a fun, safe, and accepting environment. Resources participants have access to include speech and language resources, handicapped recreational equipment, physical therapy and nutrition tips, and aid in dealing with depression and isolation.
The camp, an idea wrought from Marylee’s and her husband, John’s, own personal experiences as caregiver and stroke survivor, respectively, began after researching and trying to find ways to connect with others and to “have fun again” after the unrelenting “seriousness” of John’s massive stroke and three-year recovery process. Marylee, who had previously been involved with her sister’s successful efforts in establishing a camp program for children with Cystic Fibrosis, had experienced the process of building such an opportunity and the benefits of participation in that type of activity. She was feeling as if she “couldn’t make it by herself” and had seen what support and connection with others experiencing the same challenges could mean.
In 2004, she and her sister put together one camp for the first year. Marylee submitted a story to a national magazine, “Stroke Connection,” which was published and sparked interest in her concept. The second year, the plan was to do two camps. In the meantime, Marylee began discussing her new endeavor with a friend and colleague, Larry Schaer. As a business entrepreneur himself, he felt that she “was on to something.” Using his expertise and a certain synergy that developed between their joint skills and experiences, he came up with a business plan, and they began “taking the camps to the people.” When people attended and started sharing with others how meaningful their experiences at Retreat and Refresh Stroke Camp were, there was an exciting response. In 2007, RRSC became a nonprofit business, and since then the number of camps per year has gone from one, to four, to six, to 25 this year. The camps have taken place in 15 states.
A typical camp begins on Friday afternoon and lasts through lunch on Sunday. Usually, the number of participants number around 20.
by Linda Zears
“A stroke is an injury to the brain that can cause life altering changes,” says Marylee Nunley, Executive Director of Retreat and Refresh Stroke Camp, a local non-profit organization that provides, “A Camping Experience for Stroke Survivors and Their Caregivers.”
The weekend long experience is meant to refresh survivors, caregivers, and family members from the many challenges they face daily related to stroke, and to provide socialization, relaxation, education and support in a fun, safe, and accepting environment. Resources participants have access to include speech and language resources, handicapped recreational equipment, physical therapy and nutrition tips, and aid in dealing with depression and isolation.
The camp, an idea wrought from Marylee’s and her husband, John’s, own personal experiences as caregiver and stroke survivor, respectively, began after researching and trying to find ways to connect with others and to “have fun again” after the unrelenting “seriousness” of John’s massive stroke and three-year recovery process. Marylee, who had previously been involved with her sister’s successful efforts in establishing a camp program for children with Cystic Fibrosis, had experienced the process of building such an opportunity and the benefits of participation in that type of activity. She was feeling as if she “couldn’t make it by herself” and had seen what support and connection with others experiencing the same challenges could mean.
In 2004, she and her sister put together one camp for the first year. Marylee submitted a story to a national magazine, “Stroke Connection,” which was published and sparked interest in her concept. The second year, the plan was to do two camps. In the meantime, Marylee began discussing her new endeavor with a friend and colleague, Larry Schaer. As a business entrepreneur himself, he felt that she “was on to something.” Using his expertise and a certain synergy that developed between their joint skills and experiences, he came up with a business plan, and they began “taking the camps to the people.” When people attended and started sharing with others how meaningful their experiences at Retreat and Refresh Stroke Camp were, there was an exciting response. In 2007, RRSC became a nonprofit business, and since then the number of camps per year has gone from one, to four, to six, to 25 this year. The camps have taken place in 15 states.
A typical camp begins on Friday afternoon and lasts through lunch on Sunday. Usually, the number of participants number around 20.
Blogger note: the number 20 refers to the number of stroke survivors. In addition to them there are their caregivers who attend with them and anywhere from 10 to 20 volunteers who help out through the weekend. The actual number of participants, therefore, can be closer to 60. The environment we provide is a handicap accessible, motel, hotel, or lodge style environment. Each survivor/caregiver pair is provided a private room with bath, and all meals are catered. Crafts, entertainment and pampering are also included. Back to you Linda...
The activities are planned so that participants can have the most exposure to nature, the sun, the sky, the wind in their faces, and a watchful eye on the “fatigue factor” for participants and volunteers. Educational opportunities abound with keynote speakers, such as pharmacists and neurologists, and DVD and video sessions. Breakout sessions provide support and other educational opportunities. Survivors, caregivers and families have a chance to do karaoke, play drums, participate in games, and sing and dance in a safe place where everyone understands. Pampering and relaxation are included! On Saturday morning , a massage therapist soothes sore, stressed necks and shoulders, while achy hands get a paraffin treatment to ease the pain, and chair exercises in Tai Chi and yoga relax the mind, body, and soul of participants. Healthy meals are planned and served, and survivors are assisted by volunteers, so that both they and those accompanying them can relax during mealtime. Golf-cart rides around the grounds, along with campfires and s’mores in the evenings round out full days!
One special, annual camp is held by RRSC in Fulton County at Living Springs. This camp is designed to meet the needs of younger stroke survivors who have children, and kids who are learning to cope with the challenges of stroke. It is one day longer and gives kids an opportunity to meet and interact with other kids facing similar experiences.
The practicality of “take aways” for participants is information not found in the “doctor’s office,” but from fellow participants learning to cope in their own set of circumstances. One stroke survivor learned that she was not “lazy,” as someone had suggested, when she needed to take a nap midday. Napping can be a necessity, as the functioning brain labors to compensate for other parts that have been affected, in dealing with the tasks at hand, and needs time to rest and recharge. The survivor could now engage in appropriate self care without guilt. After 12 years of attempting a multitude of ideas to lessen a survivor’s anxiety over the daily schedule, it was a suggestion from a fellow caregiver, who had been successful in finding a solution, that finally gave a participant the tool that was needed to relieve both survivor’s and caregiver’s anxiety. Just one example of “science” being discovered in the experience, rather than in the doctor’s office, is the “Sierra Mist/quinine connection. When "hemiplegia,” or paralysis occurs on one side of the face of a stroke survivor, there may be a loss of the sensation of saliva in the mouth leading to it leaking out undetected from the affected side of the mouth. It was discovered that if the survivor drank some Sierra Mist soda, it minimized the “drooling.” Further investigation revealed that the unique ingredient of that soda, rather than others, was “quinine,” which seems to affect that process in a positive way.
Retreat and Refresh Stroke Camps are possible largely due to the volunteers and sponsors, says Nunley. The staff of RRSC is small: Marylee Nunley, Larry Schaer, and office manager and music therapist, Lauren Kramer. Volunteers provide invaluable and priceless support for survivors as they navigate through the activities of the camp, and during mealtimes. Assistance to survivors and freedom to the caregivers and family to participate together and separately with survivors is invaluable.
Sponsors of the camps tend to be stroke centers and rehabilitation services, taking on the expenses of bring “the circus to town,” Marylee says with a smile. A recent quote from a sponsor, “It is an honor to be part of a team working towards the same goal…to give them a life back.” This sponsorship and the dedicated volunteers allow RRSC to keep costs to participants at $125 per person for the entire weekend, with everything included. Once the acute medical care has ceased, rehabilitation services are waning, and insurance payments are nonexistent, recovery can and does go on. Not only does Retreat and Refresh Stroke Camp provide survivors, caretakers, and family members opportunities to refresh from the challenges of stroke and to realize they can still have fun and laugh, but it exposes participants “in new ways to relevant and practical topics.” Feedback from participants has included expressions of “having fun,” “feeling understood,” “encouraged,” “being around people who knew what I was talking about,” “no longer needing to hide or feel ashamed,” and “a life-changing event.”
One good idea can often mushroom, and that has been the case with RRSC. A multi-level community outreach has resulted from the growing role that RRSC has in building Stroke Awareness. “Strike Out Stroke,” a trademarked stroke initiative targeting major/minor league baseball, has been used to promote the "FAST,” the signs of stroke message to fans, efforts that by 2014 have reached 1.5 million people. Other educational efforts targeting our community are the fifth grade Education Programs, and the “Mega Brain and Stroke Learning Center.”
Fifth graders in our community hear stories from survivors, caregivers and medical personnel, learn the signs of strokes, and through fun and interactive activities, learn the challenges of being a stroke survivor. A poster contest is held and the grand prize winner earns a ride on the Life Flight Helicopter, which lands in the middle of Dozer Field where they throw out the first pitch of the game, one dedicated to Stroke Awareness. All fifth grade posters are on display at the game. You just might see the Mega Brain and Stroke Learning Center there and at other places around town.
Survivors, caregivers and families feel a real need to give back to their community. One of the activities of the camp has grown into another community outreach is the “Chime Strokers,” a performing tone chime ensemble made up of survivors and caregivers, and directed by music therapists.” The ensemble is available for “gigs” and use their performances to bring stroke and survivor awareness to the community.
To connect to and learn more about Retreat and Refresh Stroke Camps and the community outreach programs mentioned:
Located at: 2000 Pioneer Parkway, Suite 16, Peoria, IL 61615
Phone: 866.688.5450 or 309.688.5450
Internet: www.strokecamp.org info@strokecamp.org www.strikeoutstroke.com www.rrscb.blogspot.com
and on Facebook at https://www.facebook.com/strokecamp
One special, annual camp is held by RRSC in Fulton County at Living Springs. This camp is designed to meet the needs of younger stroke survivors who have children, and kids who are learning to cope with the challenges of stroke. It is one day longer and gives kids an opportunity to meet and interact with other kids facing similar experiences.
The practicality of “take aways” for participants is information not found in the “doctor’s office,” but from fellow participants learning to cope in their own set of circumstances. One stroke survivor learned that she was not “lazy,” as someone had suggested, when she needed to take a nap midday. Napping can be a necessity, as the functioning brain labors to compensate for other parts that have been affected, in dealing with the tasks at hand, and needs time to rest and recharge. The survivor could now engage in appropriate self care without guilt. After 12 years of attempting a multitude of ideas to lessen a survivor’s anxiety over the daily schedule, it was a suggestion from a fellow caregiver, who had been successful in finding a solution, that finally gave a participant the tool that was needed to relieve both survivor’s and caregiver’s anxiety. Just one example of “science” being discovered in the experience, rather than in the doctor’s office, is the “Sierra Mist/quinine connection. When "hemiplegia,” or paralysis occurs on one side of the face of a stroke survivor, there may be a loss of the sensation of saliva in the mouth leading to it leaking out undetected from the affected side of the mouth. It was discovered that if the survivor drank some Sierra Mist soda, it minimized the “drooling.” Further investigation revealed that the unique ingredient of that soda, rather than others, was “quinine,” which seems to affect that process in a positive way.
Retreat and Refresh Stroke Camps are possible largely due to the volunteers and sponsors, says Nunley. The staff of RRSC is small: Marylee Nunley, Larry Schaer, and office manager and music therapist, Lauren Kramer. Volunteers provide invaluable and priceless support for survivors as they navigate through the activities of the camp, and during mealtimes. Assistance to survivors and freedom to the caregivers and family to participate together and separately with survivors is invaluable.
Sponsors of the camps tend to be stroke centers and rehabilitation services, taking on the expenses of bring “the circus to town,” Marylee says with a smile. A recent quote from a sponsor, “It is an honor to be part of a team working towards the same goal…to give them a life back.” This sponsorship and the dedicated volunteers allow RRSC to keep costs to participants at $125 per person for the entire weekend, with everything included. Once the acute medical care has ceased, rehabilitation services are waning, and insurance payments are nonexistent, recovery can and does go on. Not only does Retreat and Refresh Stroke Camp provide survivors, caretakers, and family members opportunities to refresh from the challenges of stroke and to realize they can still have fun and laugh, but it exposes participants “in new ways to relevant and practical topics.” Feedback from participants has included expressions of “having fun,” “feeling understood,” “encouraged,” “being around people who knew what I was talking about,” “no longer needing to hide or feel ashamed,” and “a life-changing event.”
One good idea can often mushroom, and that has been the case with RRSC. A multi-level community outreach has resulted from the growing role that RRSC has in building Stroke Awareness. “Strike Out Stroke,” a trademarked stroke initiative targeting major/minor league baseball, has been used to promote the "FAST,” the signs of stroke message to fans, efforts that by 2014 have reached 1.5 million people. Other educational efforts targeting our community are the fifth grade Education Programs, and the “Mega Brain and Stroke Learning Center.”
Fifth graders in our community hear stories from survivors, caregivers and medical personnel, learn the signs of strokes, and through fun and interactive activities, learn the challenges of being a stroke survivor. A poster contest is held and the grand prize winner earns a ride on the Life Flight Helicopter, which lands in the middle of Dozer Field where they throw out the first pitch of the game, one dedicated to Stroke Awareness. All fifth grade posters are on display at the game. You just might see the Mega Brain and Stroke Learning Center there and at other places around town.
Survivors, caregivers and families feel a real need to give back to their community. One of the activities of the camp has grown into another community outreach is the “Chime Strokers,” a performing tone chime ensemble made up of survivors and caregivers, and directed by music therapists.” The ensemble is available for “gigs” and use their performances to bring stroke and survivor awareness to the community.
To connect to and learn more about Retreat and Refresh Stroke Camps and the community outreach programs mentioned:
Located at: 2000 Pioneer Parkway, Suite 16, Peoria, IL 61615
Phone: 866.688.5450 or 309.688.5450
Internet: www.strokecamp.org info@strokecamp.org www.strikeoutstroke.com www.rrscb.blogspot.com
and on Facebook at https://www.facebook.com/strokecamp
Sunday, December 6, 2015
Would You Like To Be A Stroke Camp Volunteer
I'm going to post this now so that you will have a chance to ponder this question over the holidays and perhaps give you time during the hustle and bustle of the season to listen to that little inner voice that may be directing you in a very meaningful and rewarding direction. And my hope is that it is speaking to you about us. I plan to post this again around mid-March next year since that is when we begin to develop and schedule our camp
itinerary for 2016.
If any of our needs interest you now, please feel free to contact us using the phone number or addresses at the bottom of this post for further information or to answer any questions you might have .
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itinerary for 2016.
If any of our needs interest you now, please feel free to contact us using the phone number or addresses at the bottom of this post for further information or to answer any questions you might have .
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Sunday, November 29, 2015
Stroke and Young Children
The following article was written and published on the StrokeNet Newsletter web site by David Wasielewski.
David is a stroke survivor and member of the StrokeNet staff. I encourage you to visit the StrokeNet web site by clicking on this link: www.strokenetwork.org
Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with our readers, with permission from the StrokeNet staff, of course.
by David Wasielewski
A Resource Guide
As we all know strokes can happen at any age. Young and middle age adults who survive stroke often have families with young children who need to deal with the challenges that a stroke brings to the family life. This begins with the initial trauma and crisis associated with the event and continues with the challenges of changing home life and relationships that become part of the stroke survivor’s life.
Explaining what is happening to a child presents a particular challenge. Sudden changes in routine, trips to the hospital and conversations with strange doctors about illness and strokes are frightening for a child. The child’s sensitivities and ability to understand what has happened and what might happen in the crisis need to be carefully dealt with.
It is probably a time where a skilled professional should be consulted but is also a time when those folks are not usually sought out. The unprepared adults are often left to their own devices to deal with the situation as best as they can. How does an adult family member reframe a stroke in ways that the child might understand? How do we help a child cope with the crisis even when we adults are often unable to hold it together as the situation unfolds?
This is not something we, as parents typically prepare for. The effects of stroke are emotional, social and economic and need to be addressed in terms a child can understand. One paper describes stroke as a family illness as all aspects of family life are affected by the short and long term changes it brings. A much as the family might try to shield a child from the trauma that child will eventually need to deal with the reality that stroke brings to the family routine, both near and long term.
The Lippincott Nursing Center has posted an article that addresses families and stroke:
http://www.nursingcenter.com/lnc/static?pageid=1346847#sthash.4WeqNiIZ.dpuf This article points to some of the many resources available to stroke survivors with young children.
Recognizing this need, the national stroke foundation (NSF) has provided some guidance to families in the midst of this crisis: http://www.strokefoundation.com.au/blog/?p=983 At the NSF social media sites, the StrokeConnect online forum and StrokeLine have all attracted questions about how best to explain stroke, and its aftermath, to children.
Their suggestions include the following:
1. Explain what a stroke is in language that is not misleading but in words that the child can comprehend (eg, a blood vessel taking blood to the brain wasn’t healthy and it bled or burst which meant the brain didn’t get enough blood for a while)
2. Explain the consequences – the brain controls the way we move, think and talk, so after a stroke people often move, think and talk differently
3. Even when the person who has had a stroke comes home from hospital they might have to see the doctor, or other people who can help them, a lot and they may not be able to do the same things they did before the stroke
4. Fatigue post-stroke is a major issue for many stroke survivors – make sure the child knows that the family member might need a lot of rest to get better
5. It can take a long time for someone to get better after a stroke
The UK stroke association provides a Guide for explaining stroke to a 9 year old. It breaks the details into words and concepts the child can understand.
Several children’s books are available that help explain strokes to young family members. Some are immediately available on YouTube or in pdf format for free.
Love after Stroke describes a child’s relationship with a grandparent who had a stroke and how they deal with aphasia and other related impairments. The text is also available on YouTube for quick access. Purchase
My grandpa had a Stroke describes what a stroke looks like from the perspective of a young child after his grandpa returns home after surviving a stroke. It documents grandpa’s recovery process as well as how the child deals with the various emotions involved in their relationship. Link to Amazon
Jack’s story describes Jack and his experience with his grandma’s stroke. The book is immediately available on line in .pdf format
Nana’s stroke is described as a counseling book written especially for children, this storybook helps children understand both the physical and emotional changes experienced when an adult has a stroke. Told through the eyes of a young girl named Libby, the book defines complex medical concepts in words. Link to Amazon
The Aphasia Handbook is not a children’s book but, rather a guide for Aphasia survivors and their families published by the National Aphasia Association. Link to Amazon
Mama Just Shake It is another children’s book on stroke with the text available on YouTube . It explains how a child views issues like hemiplegia and aphasia.
Grandpa’s Crooked Smile is available on line. It illustrates how a child deals with his Grandpa’s stroke and incorporates a number of learning exercises to help a child to recognize stroke symptoms. Link to book.
These books might not cover all aspects of a stroke but provide a context or a starting point for a more meaningful conversation with a child about the various aspects of dealing with changes in stroke survivors. They also illustrate the level of understanding that a child is capable of.
Families with young children might consider speaking with a professional psychologist about the effects a stroke have on children and the family dynamic. Psychologists are often readily available at the hospital, especially in rehab units. It is important to consider the child’s unique situation and needs even as the adults in the family struggle themselves to adjust to the changes that strokes bring to their lives.
Copyright @January 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.
Sunday, November 22, 2015
15 Things a Caregiver Should Know
The following was taken from a status update that showed up on my personal Face Book page. I thought this was very appropriate advice to pass along to the readers of this blog.
1. It’s better to find out than miss out. Be aware of the medications that have been prescribed to your loved one and their side effects. Ask if your home should be modified to meet the specific needs of the stroke survivor. Ask a doctor, nurse or therapist to clarify any unanswered questions or to provide written information that explains what occurs after the stroke and during recovery or rehabilitation.
2. Reduce risks, or stroke may strike again. Survivors who have had one stroke are at high risk of having another one if the treatment recommendations are not followed. Make sure your loved one eats a healthy diet, exercises (taking walks is great exercise), takes medications as prescribed, and has regular visits with their physician to help prevent a second stroke.
3. Many factors influence recovery. Recovery depends on many different factors: where in the brain the stroke occurred, how much of the brain was affected, the patient’s motivation, caregiver support, the quantity and quality of rehabilitation, and how healthy the survivor was before the stroke. Because every stroke and stroke survivor is unique, avoid comparisons.
4. Gains can happen quickly or over time. The most rapid recovery usually occurs during the first three to four months after a stroke, but some stroke survivors continue to recover well into the first and second year post-stroke.
Editor's note: I will take exception to the last part of this item #4. Retreat & Refresh Stroke Camp's experience with over 130 camps spanning 11 years and the several thousand survivors we have come in contact with during that time has shown that while the most rapid recovery does occur during the first three to four months we see continued improvement for many years and even over a lifetime. Stroke survivors should never give up, never quit striving to improve. Soon I will be posting an article that addresses this very topic.
5. Some signs point to physical therapy. Caregivers should consider seeking assistance from a physical or occupational therapist if their loved one has any of these complaints: dizziness; imbalance that results in falls, difficulty walking or moving around in daily life; inability to walk six minutes without stopping to rest; inability to do things that he/she enjoys like recreational activities or outings with family or increased need for help to engage in daily activities.
6. Don’t ignore falls. Falls after stroke are common. If a fall is serious and results in severe pain, bruising or bleeding, go the Emergency Department for treatment. If a loved one experiences minor falls (with no injury) that occur more than two times within six months, see your physician or the physical therapist for treatment.
7. Measuring progress matters. How much acute rehabilitation therapy your loved one receives depends partly on his/her rate of improvement. Stroke survivors on an acute rehabilitation unit are expected to make measurable functional gains every week as measured by the Functional Independence Measure Score (FIMS). Functional improvements include activities of daily living skills, mobility skills and communication skills. The typical rehabilitation expectation is improving 1 to 2 FIM points per day.
8. A change in abilities can trigger a change in services. Medicare coverage for rehabilitation therapies may be available if your loved one’s physical function has changed. It there appears to be improvement or a decline in motor skills, speech or self-care since the last time the patient was in therapy, he/she may be eligible for more services.
9. Monitor changes in attitude and behavior. Evaluate whether your loved one is showing signs of emotional lability (when a person has difficulty controlling their emotions). Consult a physician to develop a plan of action.
10. Stop depression before it hinders recovery. Post-stroke depression is common, with as many as 30–50 percent of stroke survivors developing depression in the early or later phases post stroke. Post-stroke depression can significantly affect your loved one’s recovery and rehabilitation. Consult a physician to develop a plan of action.
11. Seek out support. Community resources, such as stroke survivor and caregiver support groups, are available for you and your loved one. Stay in touch with a case manager, social worker or discharge planner who can help you find resources in your community.
12. Learn the ins and outs of insurance coverage. Be sure to consult with your loved-one’s doctor, case manager or social worker to find how much and how long insurance will pay for rehabilitation services. Rehabilitation services can vary substantially from one case to another. Clarify what medical and rehabilitation services are available for hospital and outpatient care. Determine the length of coverage provided from your insurance (private or government supported) and what out-of-pocket expenses you can expect.
13. Know when to enlist help. If rehabilitation services are denied due to lack of “medical necessity,” ask your loved one’s physician to intervene on his or her behalf. Ask the physician to provide records to the insurance carrier and, if needed, follow up yourself by calling the insurance company.
14. Know your rights. You have rights to access your loved-one’s medical and rehabilitation records. You are entitled to copies of the medical records, including written notes and brain imaging films.
15. Take care of you. Take a break from caregiving by asking another family member, friend or neighbor to help while you take time for yourself. Keep balance in your life by eating right, exercising or walking daily, and getting adequate rest.
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Sunday, November 15, 2015
I Am A Brain Scientist/Stroke Survivor
I got this tip from Clay Nichols, Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software that is used for speech recovery after a stroke.
The following is a re-post from the Ted Talk web site: www.ted.com. I must warn you before you click on the link at the bottom of this page the video of Jill Bolte Taylor's talk shows her handling an actual human brain. However, I think you will be captivated by her personal experience.
Brain researcher Jill Bolte Taylor studied her own stroke as it happened — and has become a powerful voice for brain recovery.
Why you should listen
One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...
Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."
What others say
“How many brain scientists have been able to study the brain from the inside out? I've gotten as much out of this experience of losing my left mind as I have in my entire academic career.” — Jill Bolte Taylor
See Jill Bolte Taylor’s TED talk here:
Jill-Bolte-Taylors-Powerful-Stroke-of-Insight
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Brain researcher Jill Bolte Taylor studied her own stroke as it happened — and has become a powerful voice for brain recovery.
Why you should listen
One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...
Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."
What others say
“How many brain scientists have been able to study the brain from the inside out? I've gotten as much out of this experience of losing my left mind as I have in my entire academic career.” — Jill Bolte Taylor
See Jill Bolte Taylor’s TED talk here:
Jill-Bolte-Taylors-Powerful-Stroke-of-Insight
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Sunday, November 1, 2015
Ohio Stroke Camp 2015 - Sleeping In Tents? No! Eating Hot Dogs? NO!!!
Blogger Note: due to circumstances this post is running for two weeks. A new article will be posted by November 15th.
Do you think you know what Retreat & Refresh Stroke Camp is all about? Guess again! Let me show you our Ohio camp as an example. And we had over fifty-five campers.
Okay, this last one might have been the result of a camper eagerly anticipating approaching Halloween. (Yeah, kinda creeped me out, too).
And this is only a few hours of what we do at a full weekend of camp.
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Do you think you know what Retreat & Refresh Stroke Camp is all about? Guess again! Let me show you our Ohio camp as an example. And we had over fifty-five campers.
Okay, this last one might have been the result of a camper eagerly anticipating approaching Halloween. (Yeah, kinda creeped me out, too).
And this is only a few hours of what we do at a full weekend of camp.
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Monday, October 26, 2015
"We're Survivors, NOT Victims"
By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer
“We’re survivors, NOT victims.”
Our society needs to take the word “victim” out of its vocabulary when it comes to stroke.
If you've had a stroke, you are a survivor, NOT a victim. When you think of yourself as a victim, that hurts your recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed.
If you're a caregiver, your loved one is a survivor, NOT a victim. When you think of them as a victim, that affects how you aid them in their recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed. (Yes, that's a repeat of the above!)
I admit that I blow a gasket whenever I see "victim" in a news headline about stroke. I cringe when I hear medical professionals refer to survivors as victims, and when I can gently correct them, I do so with a smile. When I hear a caregiver refer to their loved one as a victim, I follow up with how "your SURVIVOR …" And when I hear a survivor refer to themselves as a victim, I boldly say, "You are a SURVIVOR!"
That statement, "We're survivors, NOT victims," was expressed during one of the first survivor discussion groups I participated in at Retreat & Refresh Stroke Camp in 2008. And I've never forgotten it.
And I never, never forget it when I volunteer at a Stroke Camp because I get to witness survival at its finest. I am exposed to so much life and the real purpose of living that I have been forever transformed by it. Stroke Camp leads the way when it comes to the true meaning of life with an abundance of love, connections, laughter, personal expression, creativity, the right kind of tears, and the hugs, oh yes, the hugs.
Here are just a tiny, tiny sampling of the faces of survivors who have surrounded me with so much life and love this year … Not enough room to share them all! :-)
Retreat & Refresh Stroke Camp Staff Volunteer
“We’re survivors, NOT victims.”
Our society needs to take the word “victim” out of its vocabulary when it comes to stroke.
If you've had a stroke, you are a survivor, NOT a victim. When you think of yourself as a victim, that hurts your recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed.
If you're a caregiver, your loved one is a survivor, NOT a victim. When you think of them as a victim, that affects how you aid them in their recovery. It distracts you from focusing on the present and the future, where all your energy needs to directed. (Yes, that's a repeat of the above!)
I admit that I blow a gasket whenever I see "victim" in a news headline about stroke. I cringe when I hear medical professionals refer to survivors as victims, and when I can gently correct them, I do so with a smile. When I hear a caregiver refer to their loved one as a victim, I follow up with how "your SURVIVOR …" And when I hear a survivor refer to themselves as a victim, I boldly say, "You are a SURVIVOR!"
That statement, "We're survivors, NOT victims," was expressed during one of the first survivor discussion groups I participated in at Retreat & Refresh Stroke Camp in 2008. And I've never forgotten it.
And I never, never forget it when I volunteer at a Stroke Camp because I get to witness survival at its finest. I am exposed to so much life and the real purpose of living that I have been forever transformed by it. Stroke Camp leads the way when it comes to the true meaning of life with an abundance of love, connections, laughter, personal expression, creativity, the right kind of tears, and the hugs, oh yes, the hugs.
Here are just a tiny, tiny sampling of the faces of survivors who have surrounded me with so much life and love this year … Not enough room to share them all! :-)
Sunday, October 18, 2015
Strike Out Stroke Survivors
COURAGE,
HOPE,
RESILIENCY
Teaching Stroke Awareness is Strike Out Stroke's Mission and celebrating stroke survivors tenacity and determination is a driving force in educating the public about this devastating disease.
Putting a human face on stroke is a goal of SOS. Who are the people afflicted by Stroke and what does it take to recover? How does stroke impact a survivor and their family?
What kind of outcomes do stroke survivors face for their lives?
Strike Out Stroke Events select outstanding candidates to represent the gender, age and ethnic diversity of stroke survivors as well as the multiplicity of outcomes and to represent the drive that moves stroke victims from personal adversity to social advocacy.The life stories are inspirational, touching baseball fans to rally to advocate in their own lives and social circles.
Survivors ....walk, limp and roll onto the field proud of their recovered abilities....they demonstrate that young people and children, black, brown, white and yellow have strokes ....and with hard work the human spirit will recover, revive, recreate a new spirit in a stroke survivor! They all deserve to be uplifted and CELEBRATED!
Visit strikeoutstroke.com
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