Monday, February 8, 2016

It's the moments that matter … part 2

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

One of the many joys of Retreat & Refresh Stroke Camp is the rediscovery of the simplest pleasures in life … which we often take for granted. Just waiting for those moments to happen is what makes me love everything about the Stroke Camp experience.

I'm extremely blessed to have the opportunity to photograph so many of these special memories, and here are just a few of these occasions from the 2015 camp season.

I loved watching Lauren Kramer, our director of operations, inviting one of our survivors to get up and dance at our Montana camp during the Saturday night entertainment. As many of the couples started to hit the floor, some of our staff and volunteers were looking for "singles" who might like the chance to dance. Lauren asked Irene, who is always up for some fun.

And it was so inspiring to witness Irene forget all about any physical challenges and simply move to the music. One of the greatest lessons I've learned about being involved with Stroke Camp is how important it is to just "ask" … ask a survivor or caregiver if they want to dance or sing or play or be part of the group.

If we'd all ask someone if they'd like to participate, so many walls and fears would be erased in this world. Don't just wonder if someone wants to do something, ask them. Sometimes that's all they need to hear to join the fun, to be invited, to be included. Just ask.

Stroke Camp is also all about encouraging our survivors and caregivers to express themselves creatively, and they don't have to be artists to create something truly amazing.

One of our crafts last year was a form of Japanese painting, a unique technique of applying small drops of paint to a special water base and watching them spread into beautiful images. I watched a lot of campers try this art form for the first time, but I was particularly drawn to Wayne at our Chicago-area camp and watching his priceless expression as he discovered that he could create art all by himself.

His face tells the story of the wonder of what the human mind and body can create when given an opportunity and canvas to dabble and design. Yes, you have a creative bone in your body, whether you think so or not, and that "talent" is different in everyone. We just need the right forum to express it, and Stroke Camp is one of the most creative environments in the world because our campers are encouraged to be themselves.

A little nudge, a little encouragement, a little patience, a lot of love … it all goes a long way at Stroke Camp …

Sunday, January 31, 2016

It's the moments that matter … part 1

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

One of the most precious elements of Retreat & Refresh Stroke Camp is witnessing moments that are memorable and that matter. I have been so blessed to be in just the right place at the right time to see priceless human connections unfold before my camera lens. This week and for the next couple of weeks, I want to share the stories behind some of my favorite photos that in some small way tell the story of Stroke Camp and why this organization is so vital to so many folks.

During evening activities at our Living Springs camp in 2014, I was mesmerized by watching music therapist Kyle Wilhelm, right, interact with stroke survivor Mel. Mel has severe aphasia, which has hindered his ability to speak, but it has not dampened his enthusiasm for life and the odd ability to say two words, "hot dog!"

I love Mel and his devoted wife and caregiver Dora, and I stood off to the side for about 10 minutes watching Kyle work with Mel to bring some rhythm to his speaking efforts. We've seen some amazing miracles with music therapy at camp, which is a whole other subject. What I loved about this moment was the human bond these two men are sharing to learn new ways of communicating.

The roots of Stroke Camp are based on pure and simple human connections. It's truly what camp is all about, whether it's a survivor or caregiver getting personalized attention on ways to improve their daily life, or reminding them that there IS life after stroke.

Yes, there IS much more to be discovered about life after a stroke … much more laughter to be shared … much more love and friendship to be revealed. And that's the ultimate beauty of Stroke Camp …

Sunday, January 24, 2016

The Whole Brain Nothing But The Brain.

This post is about the brain. Strokes and brains are closely related (thank you Mister Obvious). The brain is more than a glob of tissue in your skull. It is so much more complicated, and consisting of so many parts that it defies comprehension. Cutting the blood supply (aka; stroke) to any of these parts will have dire consequences. 

I'm going to tell you about a mobile app that will show you every part of the brain plus explanations giving you a better understanding of the complexity of this organ. 

This is a free app called 3D Brain (by DNA Learning Center) that I found on the Google Play Store. I would be willing to say that it is free on the iTunes - Apple Store, too. Just bring up the store app of your choice and do a search on 3D Brain.

3D Brain was produced by the Dolan DNA Learning Center at Cold Spring Harbor Labratory, 1 Bungtown Road, Cold Spring Harbor, NY 11724:

The following is taken from the info tab of the 3D Brain app itself as it appeared on my Android tablet. If you don't want to read all this then scroll down to where I show you the graphics and how to use the app.


The brain is a remarkable structure that defines who we are as individuals and how we experience the world. Recent advances in neuroimaging have allowed researchers to look inside the brain, providing vivid pictures of its subcomponents and their associated functions. The gross structure of the brain is familiar to most. The outer layer of the forebrain constitutes the familiar wrinkled tissue that is the cerebral cortex, or cortex for short. The large folds in the cortex are called gyri (from the Greek, ‘circle’). The small creases within these folds are fissures (from the Greek, ‘trench’). Each hemisphere of the cortex consists of four lobes— frontal, parietal, temporal, and occipital. Other important structures are the brainstem, cerebellum the limbic system (which includes the amygdala and hippocampus).

The G2C Brain consists of 29 interactive structures that can be rotated in 3-D space. Each structure contains information on associated functions, disorders, brain damage, case studies, and links to contemporary modern research.

Case studies
Perhaps the most well known-case study in neuroscience is Phineas Gage, who suffered severe damage to the prefrontal cortex following a railroad-related accident in 1848. An explosion drove a large iron rod through Gage’s skull, and he was later reported to have severe social impairments. Although the extent of these impairments remains controversial, his case study was a landmark in that it correlated specific cognitive functions with a specific brain area. Since then, tens of thousands of case studies have sought to associate specific brain regions with specific functions, and many of these are documented in G2C Brain structures. However, it is important not to overstate the point. All cognitive functions result from the integration of many simple processing mechanisms, distributed throughout the brain.

Associated functions
many others

Associated cognitive disorders
Almost without exception, cognitive disorders correlate to multiple regions in the brain. Just as the genes and biochemicals associated with cognition are expressed throughout the brain, gross structures that correlate with cognitive disorders are widespread. This is certainly true of the six disorders covered in G2C Online: ADHD, Alzheimer's autism, bipolar disorder, depression, and schizophrenia.

Associated with damage
It is possible for the brain to repair damaged neural networks or to compensate for the loss of function in particular structures. Common impairments resultants from brain damage include deficits in attention, emotion, language, learning, memory, movement, perception and sensation.

basal ganglia
Broca's area
cingulate cortex
corpus callosum
dentate gyrus
entorhinal cortex
frontal lobe
inferior temporal gyrus
limbic system
middle temporal gyrus
occipital lobe
parietal lobe
perirhinal cortex
prefrontal cortex
premotor cortex
primary motor cortex
somatosensory cortex
superior temporal gyrus
temporal lobe
Wernicke's area
and many others

Here I will show you the steps to use the app.

1. When you start the app you are presented with the following screen. You can tell your in 3D View mode because you can see the blue line under the words 3D VIEW near the top left of the screen. You can touch the brain and rotate it left and right by sliding your finger.

2. From this first screen you can bring up the list of parts as shown below by touching the word Brain that appears just under that blue line. The list will look like this:

3. Touching any of the items in the list as shown above will show you a 3D image like this one below. I selected Amygdala. Again, touching the image and sliding your finger left or right will rotate the image:

4. Now, if you touch the word LABELS near the top of the screen that is just to the right of the words 3D VIEW, you'll see the following with the blue bar now under the word LABELS, and lines pointing to each area for that part. This image does not rotate:

5. Next, if you want to see more information about this part, then touch the word INFO that is to the right of the word LABELS near the top of the screen.

This is what you'll see. A detailed description of the item:

6. To position to another brain item, touch 3D VIEW again and start over. That's all there is to it.

Research reviews

Harrison and Weinberger (2008) review schizophrenia by integrating research on genes, gene expression, and neuropathology (Pubmed ID number: 15263907).

Malenka and Bear (2004) review the processes underlying long-term potentiation and long-term depression (Pubmed ID number: 15450156).

Selkoe (2002) reviews evidence that Alzheimer's disease begins with subtle alterations of synapses in the hippocampus, caused by assemblies of the amyloid beta protein (Pubmed ID number: 12399581).

Sudhof (2004) reviews the synaptic vesicle cycle (Pubmed ID number: 15217342).


Sunday, January 17, 2016

How I Got an Extra 100 Hours of Rehab

The following article is part two of two parts written by Clay Nichols. Part one is in last week's post titled "Busting Recovery Myths". Clay, as you learned last week, is co-founder of MoreSpeech and Bungalow Software. Both provide Speech & Language Software.

I encourage you to visit his site by clicking on this link: Speech & Language Therapy Software for stroke and brain-injury survivors 


by Clay Nichols

Specific steps I took to get extra, personalized rehab treatment (free) after an injury and made a full recovery.

Previously, I explained how your brain recovers from an injury such as stroke or TBI, and why insurance sometimes doesn't provide enough therapy to make that recovery, then denies additional therapy... because you didn't make progress (what I call the Insurance Catch-22). So, if recovery is possible, but you need more than what insurance typically provides, what can you do?

Here’s what I did.

My Rehab

A year or so ago I had a shoulder problem from too much computer use. (I’ve been creating speech therapy software for over 20 years. All that time on the computer caught up to me.) So off I went to the PT.

She had me do a bunch of exercises to strengthen my shoulder but it was tough to remember the exercises. How high should I rotate my arm, here? I know, you're saying hey, you're overthinking this. If it doesn't hurt you're OK. Well, some of the movements I made caused my tendons to pop. It didn't hurt but when she cringed I knew it was a Bad Thing. And as I did the exercises, she corrected my form quite a bit. If I did those exercises wrong they wouldn’t have the desired effect, or worse, they’d cause further damage.

So, I couldn't remember the exercises and wasn't even following her directions perfectly in therapy. And I'd need over 100 hours of treatment for full recovery. I didn't have an extra $10,000 to spend on having the PT guide me through each of those 100 hours. Also, I'd rather not spend an extra 100 hours driving to and from the PT and sitting in the waiting room.

I'm not complaining. Stroke & TBI survivors have it much worse.

Why Deliberate Practice is the key to improvement

Just Do It is not as effective as Do It Right

Before I explain my nifty solution, I want to point out why I didn't follow Nike's advice and Just Do It. If I wanted the exercise time to have maximum effect I needed to do the exercises the right way, and not just going through the motions (quite literally in this case). Doing 100 hours of exercises improperly wasn't going to help me much.

In his book So Good They Can’t Ignore You, Dr. Cal Newport studied how people improve significantly at a skill. He demonstrated that exceptional skill is rarely due solely to luck and natural gifts, but due to what’s termed deliberate practice.

Put another way, if you just show up and work hard, you’ll soon hit a performance plateau beyond which you fail to get any better. We all hit plateaus. Cal Newport, PhD

Plateaus? Sound familiar? It’s what survivors in speech therapy run up against all the time, as I described previously.

What Dr. Newport calls Deliberate Practice, would translate, in Rehab, to Treatment. If you have apraxia following a stroke, and can't speak, you don't simply try harder to speak, you consult a speech therapist. They would then provide you with specific exercises for the Apraxia. An excellent example of treatment in speech therapy is the the Rosenbek Hierarchy, which is a very specific treatment protocol which research has shown is effective for Apraxia treatment. The idea behind it is that the patient starts with success (getting as much assistance as needed) then that assistance is gradually reduced as the patient improves.

Don't sacrifice socializing!
Practice is preparation, not replacement, for socializing.

Speech & language treatment should not displace social interaction: don’t give up enjoyable time with the family to sit in a room doing drill practice. But don’t expect social interaction, alone, to improve your speech and language as effectively as treatment. Treatment can also provide confidence, which makes socializing more relaxing.

How I Multiplied PT by 2000%

So….can you guess of how turned my few hours with the PT into 2000% more treatment?

I had her video record me with my phone while she told me how to do the exercises, with feedback just for me, like "how high do I raise my arm? This high."

Viola! I had a personalized training video. So, I had clearer instructions, with feedback included as voice-overs during therapy, and I could just watch it while doing the exercises.

I went in a few more times, for a total of about 4 or 5 hours of PT. And those videos let me turn that into over 100 hours of practice.


Sunday, January 10, 2016

Busting Recovery Myths

The following article is part one of two parts written by Clay Nichols, Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software. It was originally published in their free newsletter in August 2015. Clay has given me permission to re-post his article on our blog. 

Clay has spent the last 20 years helping patients, caregivers and speech pathologists with speech & language software. He's picked up a lot of tips and tricks along the way and he shares them in his free newsletter.

I encourage you to visit his site by clicking on this link: Speech & Language Therapy Software for stroke and brain-injury survivors 


What you need for speech & language recovery. And why you might not get it.
Stroke and TBI survivors talking to Clay:

"They told me the window for my recovery had closed." - Stroke Survivor

She said I had plateaued, and that I was as good as I was ever going to be," recalls Ms. Hervey, in a Wall Street Journal article (11/28/2006)
I’ve had lots of stroke and brain-injury survivors recount similar stories. And then their therapy ended. 

But, it’s a myth.
The origin of this myth is complicated. I don't think any speech therapist is saying "No patient can improve beyond X months". But that's what patients hear. Some survivors truly can't make progress, either because their deficit it too severe, or they are not motivated to do the work to improve. But that's on a case by case basis, not because there is some arbitrary "recovery window". 
Here’s what Dr. Jim Lynskey, PT, Ph.D has to say in Stroke Smart magazine:

"In truth, study after study shows that the so-called 'window of recovery' does not exist. Although the time shortly after a stroke occurs is important, most stroke survivors see the effects of recovery for the rest of their lives. Continuing physical, speech, and occupational therapy for years after a stroke can still yield positive results." (emphasis added)

The National Institutes of Neurological Disorders and Stroke (part of the NIH) agrees:

“For some stroke survivors, rehabilitation will be an ongoing process to maintain and refine skills and could involve working with specialists for months or years after the stroke."

Brain-rewiring, called Brain Plasticity, continues into Adulthood.

Scientists have discovered that the ability of the Brain to “rewire” itself doesn’t end in childhood, as was once believed.

“Today we recognize that the brain continues to reorganize itself by forming new neural connections throughout life. This phenomenon, called neuroplasticity, allows the neurons in the brain to compensate for injury and adjust their activity in response to new situations or changes in their environment.” writes Stephanie Liou at Stanford University.

Insurance Catch-22

Many get less therapy than insurance will provide. What you can do to get more.

We know the brain can continue to recover, even years later. So why do I hear from caregivers that they are being told the patient plateaued and (most importantly) insurance has not pre-authorized a follow-up visit to assess that expected readiness for more therapy? 

If the expectation from the insurance company is: You need to go home and practice until you’re ready for more therapy. Shouldn’t the insurance company pre-authorize the follow-up to confirm their assumption?

Yet, no caregiver I’ve ever spoken to has had that follow-up prescheduled. I don't think this is anything nefarious. It's just a flaw in the system. This may explain why therapy more often ends due to lack or progress rather than exhausting benefits. The data from speech therapists confirms that therapy ends 400% more often due to lack of progress than lack of benefits. Insurance is prepared to provide more benefits if you can make more progress.

The root cause of this seems to be the policy of many insurance companies that they will pay for additional therapy only when the current therapy produces results. That seems like quite a reasonable policy aimed at putting resources where they will do the most good. That’s certainly not the effect it has.

Patients need 2 to 8.8 hours of therapy per week

A review of research studies indicates that treatment of 8.8 hours 
of week is effective. Conversely, 2 hours per week is not effective.

Click this link to see: Code, C, Petheram, B 2011.
Most caregivers and patients I speak with tell me insurance is providing 3 or fewer sessions and most sessions are 45 minutes. Do the math. That's maybe 2.25 hours a week.

In a peer-reviewed medical journal article: Code & Petheram report:

“Average hours of treatment for aphasic people in the developed world ranges between 1–5 hours per week, with a great deal of variability, although recent research suggests that intense
treatment of 9 hours per week over a relatively short period is needed in order to be effective. It is concluded that there is a signi´Čücant gap between what the research suggests is the appropriate amount of treatment and actual provision throughout the English-speaking world. (Code and Petheram, 2011)." (emphasis added)

The same article reported a study that showed two hours was not enough weekly treatment to be effective. These are statistical averages and every patient is different. Some may need less or more than the average. Ask your therapist how many hours of practice you need.

Speech Therapy May Not Be Appropriate

Just as there is not rule that says recovery stops after X months or years, there is no guarantee that a patient will make progress. Some patients don't have a good "starting point" for therapy. Perhaps
they have no language whatsoever and have not made progress after 20 or 30 hours of speech therapy. Or patients may prefer to spend their time on something other than speech therapy. I tell
caregivers that stroke recovery like the old TV Detective Shoes: You have to show Motive and Opportunity. If the patient is motivated then the caregiver can provdide the opportunity. Some
patients seem unmotivated but are actually just blocked by some obstacle (fear of failure, difficulty in getting to therapy, etc.). We can remove obstacles, but we cannot provide motivation.
I'll be discussion that in an upcoming article of these Rehab Resources.

Your speech therapist's hands are tied

Your therapist has no control over the insurance company's policies. They became therapists to help you, but their hands are tied. The insurance company decides what they will pay for. If they'll pay for only 10 sessions, your treatment ends in 10 sessions. You could pay out-of-pocket but therapists understand that most people can't afford that. If you pulled out your checkbook it would cost $100 to $400 per extra hour of therapy. FYI, I'll be covering some suggestions for much more affordable therapy in a future Rehab Resource. Also, if they suggest that you need more therapy than insurance will provide then patients are likely to expect the therapist to appeal to the insurance company, a faceless bureaucracy. And your therapist would have to do that on their own time. The insurance company certainly won't pay the therapist to advocate for more money from the insurance company.

Avoid the Plateau & get more therapy

If the patient gets the additional 6 or 7 hours of weekly practice the research shows is needed, then they could make enough progress to avoid the problematic plateau and avoid therapy ending prematurely. It's a double-win: you make more progress and get more therapy, increasing the odds of even more progress.

So, now we know:

Recovery is possible even years later (From Resource #1) If...
1. The patient can get enough therapy, but...

2. The Insurance Catch-22 means that patients often do not get enough therapy....

3. You just need to find a way to get more treatment.

So, if insurance won’t pay for additional therapy unless you make progress, but doesn’t provide enough therapy to make that progress, how can you get the extra 6 or 7 hours of weekly treatment to make the progress insurance is looking for? I'll cover that in the next issue.

My Solution... in an upcoming issue

I’ll tell you how I overcame the Insurance Catch-22.

I'll also tell you how you can use that same approach to improve your odds of getting all the insurance-provided therapy you deserve and likely increase the speed of your recovery, and your odds of getting all the insurance-provided therapy you deserve (and need!).
Blog editer note: I will post the "Solution" next week but, if you don't want to wait, go to Rehab Resources site and look for "How I got 100 extra hours of rehab" :
Clay Nichols

Co-founder of MoreSpeech and Bungalow Software which both provide Speech & Language Software

For over 20 years, Clay has helped patients, caregivers and speech pathologists with speech & language software. He shares the tips & tricks he's picked up along the way.

He is not a speech pathologist.

But he consults with the speech pathologists he works with. You should consult your speech therapist regarding any tips you read anywhere, including the Rehab Resources.

Monday, January 4, 2016

Stroke caregivers are survivors, too

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Volunteer Staff

A while back, I wrote a post entitled, "We're Survivors, NOT Victims," in hopes of ridding the word "victims" from the stroke world vocabulary. I haven't met a stroke "victim" yet in the 75 Stroke Camps I've attended as a volunteer. Every one of them has been a survivor in every sense.

I've also learned much about stroke caregivers. They are survivors, as well, as they've spent countless hours in worry and care over a loved one who has had a stroke. They heard every bad scenario and prognosis in the book, and yet, they never gave up the most unique of human emotions: hope. 

Stroke caregivers run on some invisible adrenaline that can't be mass produced or even replicated by the finest chemistry labs in the world. You can't manufacture love. 

I've met caregivers of all ages, from young children whose parents have endured a stroke … to adult children caring for parents … to spouses withstanding a dramatic evolution in their relationship … to retired parents suddenly taking on a caregiving role for their adult children … to siblings, nieces, nephews, cousins and dear friends stepping into the position of caregiving with little warning or preparation.

Just when you think you've heard or seen every imaginable situation, I meet new people and witness new memories in the making at every camp I have the privilege to attend. Even those folks I've known for several years continue to evolve in their caregiving role through time. I wanted to share just a small sampling of the beauty and perseverance of caregiving I observed through my camera lens in 2015.

And I can only imagine what I will see this year … what images will inspire and stay with me forever … 

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.

Dignity Health Foundation - East Valley provided roughly $100,000 to cover upfront costs. A brief appeal for funding during the event, which was attended by stroke survivors, their spouses, health care providers and other community residents who had never been touched by stroke, quickly netted the $33,000.The ticketed event also attracted other sponsors.

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  volunteer.

"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  volunteer, came up with the idea to do the Dancing for Stroke fundraiser and also played a key role. 

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.
"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."


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.

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


and on Facebook at

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 . 


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: 

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: 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: 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.

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:  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:


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.