Sunday, January 22, 2017

A Must Read - What Happens if the Caregiver Disappears

The following article is from the Stroke Network Newsletter web site: and is a followup to last weeks post, "A Survival Guide for Stroke Groups". If, after reading this, you think of anything else that might be important but got left out, please let us know and we'll make sure it gets included.
By David Wasielewski

The importance of a personal backup plan

As we can all attest, strokes take folks by surprise. Survivors and their caregivers are caught off guard by the trauma and it’s often devastating after effects. Survivors and caregivers are tasked with accommodating the survivor’s acquired disabilities. Together they must quickly create new life routine based on the survivor’s needs. In many cases there is little time to plan this new life.

New daily routines are cobbled together on the fly and adjusted on the spot as required. Often, a family member or friend negotiates a new life routine with the survivor based on the survivor’s pre stroke personality. Many times the caregiver already has a good idea of what the survivor’s preferences might be. Food choices and mealtime routines are established along with new procedures for bathing and other personal care arrangements.

These can include the use of specific eating utensils and place settings, placement in particularly comfortable chairs in the house, the placement and storage of any aids such as canes and walkers so they are easily accessible. For survivors who can communicate effectively and retain cognitive functions these routines can be explained to anyone new.

However, for survivors with communication or cognitive difficulties this becomes a major challenge when the primary caregiver is forced from the picture. What happens if the primary caregiver gets sick and can no longer support the daily routines the team has established? A caregiver in my stroke group described just such a dilemma.

The woman and her husband, a severely aphasic stroke survivor with mobility issues, had managed to get along fairly well for the better part of a year after her husband’s stroke. Many years of marriage had left her knowing her husband’s preferred daily routines, food preferences and general likes and dislikes. Through their post stroke adventure they had also managed to establish a subtle but effective means of communication.

All was well until the wife suffered a fall on the frozen sidewalk this past winter. The injury left her with blood clots and required a five day stay for treatment in the hospital. Bad enough for her but how would her husband fare, being taken care of by a stranger? He had no way to effectively communicate with a stranger. How could he make his routines known to someone new?

Did the wife’s brief stay in the hospital jeopardize her husband’s ability to stay home? The situation alerted the wife and her husband to how fragile their living situation really was. Even a temporary stay in the hospital for treatment put the couple’s long term living situation at risk. The wife’s experiences led her to caution the group that we all need to have a Plan B for when things go awry.

We expect the stroke survivor might continue to have ongoing problems and make plans to deal with them (Plan A). But most of the members of the group reluctantly admitted that they had not seriously considered a plan B should anything happen to the primary caregiver.

A discussion among the group brought up the following possibilities. The primary caregiver needs to prepare for an emergency backup who would be available to care for the survivor in a crisis. That individual should be familiar with the survivor’s routines. These should include dressing, bathing, eating , personal care as well medication needs and schedules. The backup individual should spend time with the survivor / caregiver team to understand how to communicate with the survivor.

That individual needs to clearly understand what might be required if they are needed. An organized notebook with important care information should be readily available to the backup caregiver for reference purposes. It’s not easy to contemplate yet another crisis in an already complicated life but survivors and caregivers would be smart to prepare for such an event while they are able.

David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.

Copyright @May 2015
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.


Sunday, January 15, 2017

A Survival Guide for Support Groups

The following article is from the Stroke Network Newsletter web site:

by David Wasielewski
Contact David at

David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.
What options are available if you lose your leader either temporarily or permanently? What if your support group losses its space? David explores these issues.

I’ve written the past about having a personal backup plan for the survivor / caregiver in case the situation changes. For example: What plan is in place to care for the survivor if the caregiver gets sick? Who takes over the caregiver duties? How fast can the backup be in place in case of emergency? Each individual is responsible for creating a personal backup plan.

(Blog Editor Note: next week I will post an article written by David describing the circumstances and importance of a personal backup plan for the caregiver.)

This article urges each support group to have a backup plan for their group in case circumstances change as well. Who takes the group lead if the current leader is unable to continue? Where does the group meet if their current space suddenly becomes unavailable? How are the group members to be contacted if changes occur? How do the members contact one another?

Our group recently worked through these challenges which arose in quick succession. The changes could easily have threatened to continuation of the group. The following are some suggestions that might help other groups.

Where does the group meet if their regular space becomes unavailable? The hospital we normally meet at announced they were to start renovations and our space would be unusable for several months. We had to find a new space in short order. Several of us began a search. Fortunately, we found a space at a nearby long term care facility. The director noted our plight and volunteered their newly built chapel as a space to meet for several hours each month.

It turned out to be an opportunity for the group to explore the facility. The director arranged for a tour and we had their head therapist join us to discuss long term care options and therapeutic options and the process of choosing a long term care facility. The visit provided an opportunity for the care facility to market its care and therapy services to the community. A win- win for both parties. A discussion of options in your community might be helpful in case a new space is required for your group.

What happens when the group leader needs to step away for a time or step down permanently? Our leader recently had to step away from the group in order to deal with pressing family obligations.

While each group normally has a leader the leadership duties should at least occasionally be shared among other members. The normal facilitator should be willing to step back at times while others take the leadership role. Perhaps leading a discussion or making a presentation on a topic of interest. Test the situation occasionally in order to assure that the group and the individual are comfortable with the possible transition if called upon.

Designating an unpopular leader or one unwilling to take over leadership can make it difficult for the group to remain intact through the transition. If the leadership transition had not been considered and tried out our group could have been left leaderless and in jeopardy. Fortunately, we were prepared, and the transition has so far been successful.

How is the group to be notified as the changes occur? Several folks in the group should have a complete list of contact information for all members. This should include emails and phone numbers for all members as well as a central contact for members to call for information. Our change of location would not have been successful if the members could not be notified of where to meet. Our group has a designated a ‘communication officer’ who is responsible for sending out meeting reminders and event notifications and maintaining up to date contact lists as members come and go.

Back-up plans are important as we all know in case situations change. Planning for these emergencies and changes is important so that individual survivors are taken care of and for support groups in order to assure that they continue to meet the needs of the survivor community. Imagine these changes for your group and if your group would survive. Planning will help insure that your group survives.

Copyright ©September 2016

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.

Sunday, January 8, 2017

New Year. New Start. Start Right.

There's probably nothing new here that you haven't already heard many times. Consider this a refresher, a reminder of what could be the best way to improve your and your family's health. It has always been stressed that what we eat and how we exercise affects our health significantly, yet, it seems to be the the most difficult thing to get right. There are so many other tempting options, so many easier options that it makes it hard to get it right. But for the sake of our health we've got to try. Click on the red words in this article, too, for some more interesting tips and guides.
Suggestions from the American Heart Association News:

It’s always good idea to take charge of your health, but there’s no time like the New Year.

To help you get started in 2017, several dietitians and health experts are offering up fresh approaches to keeping those resolutions.

“You’ve had time to think about who you want to be or what you want to accomplish and to plan for that change,” said Claudia Zapata, a registered dietitian, nutritionist and author of the blog Claudia Zapata Celebrating Health. “The first days of the year serves as the ideal springboard for putting your plan into action.”

Advice from Zapata and numerous other experts are distilled into the following tips for healthier eating habits and getting active:

Start with a clean slate: Clean and organize your pantry and fridge by chucking the overly processed junk foods. Replace those sugary cereals, cookies and crackers with hydrogenated oils, bottled salad dressings and refined grains like white rice and pasta. Instead, stock up on healthy granolas and unsalted nuts and seeds; a good olive and avocado oil; a variety of vinegars; and whole grains such as quinoa, farro, bulgur, millet and brown rice. Evidence of your clean slate will help: Post “before” and “after” photos on social media to inspire yourself and your friends.

Be truthful: It can be easy to fool yourself into thinking you’re eating healthy. Sure, there are carrots in that cake and peaches in that pie. But these foods don’t count toward the fruits and veggies you should eat every day.

Cook more: Develop seven to 10 go-to healthy recipes and the shopping lists you need for them. Print them out or take photos of them with your phone. Let family members pick favorites. Aim to try a new recipe once a week or once a month. Try tweaking favorites with different ingredients.

Reduce sodium: Experiment by seasoning food with herbs and spices such as basil, black pepper, cayenne, garlic, nutmeg, and ginger instead of salt.

Include more seeds. Many seeds offer heart-healthy fats, fiber, protein and important nutrients such as magnesium and potassium. Keep a shaker with unsalted sunflower seeds, flax seeds, in your refrigerator to sprinkle over soups, salads, yogurt and oatmeal.

Stop throwing away fiber. A good portion of a fruit or vegetable’s fiber content – important for digestive health, heart health and to reduce risk of some cancers – can be found in its peel. So wash the outside but don’t remove the peel from potatoes and apples when cooking. (Only do this with edible peels – not pineapple, orange and avocado peels.)

Read the ingredient list: Many people focus on the package front and the Nutrition Facts label. A quick shortcut if you’re confused: Start by looking for foods with nutritious ingredients listed first, such as whole grains, fruits or vegetables.

Graze, don’t gorge: If you’re at a party with a tempting spread, try a small sample rather than a full portion. Balance these tantalizing snacks with healthier options such as fresh-cut fruits and vegetables, or have a healthy snack before you go so you’re not hungry when you arrive.

Help make healthy food more available: If you have a school-age child, team up with other parents to advocate for healthier cafeteria foods. At home, always have a stock of ready-to-eat healthy snacks on hand so they’re easy to grab and go when hunger strikes.

Stay hydrated. Start the day with a glass of water first thing in the morning. Look for healthier options than sugar-sweetened beverages such as sparkling water. Make water tastier by adding fruit to your ice cubes.

Get moving. While many of us focus on diet with our resolutions, remember the importance of getting active, too. It doesn’t take a lot of exercise to improve your heart health, help lose weight and just feel better. But it can help to keep track of your exercise time. The American Heart Association recommends an hour and a half a week of moderate physical activity for most adults each week (or at least 75 minutes of vigorous activity each week or a mix of both). Kids should get about an hour a day.

Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, January 1, 2017

Having a Stroke Wasn’t Her Finish Line


I was 27 when I completed a road race during an ischemic stroke

I am extremely grateful bystanders recognized my symptoms as serious.

Emily Welbourn, stroke survivor and business development director for the American Heart Association/American Stroke Association in Tacoma.


I was certain I’d been stabbed above my right eyebrow.

While running a 3.5-mile race in May 2013, I felt a sudden, piercing pain in my forehead at precisely the one-mile marker. I was 27 years old, in the best shape of my life, and had trained for this race for months. I couldn’t stop now. I squeezed my eyes shut to cope with the pain.

One foot in front of the other. By the time I crossed the finish line, my left hand no longer worked to open a water bottle. I fell while trying to stretch. Bystanders at the finish line noticed that one side of my face was drooping and took me to the medical tent in a wheelchair.

Fortunately, a physician was there to examine me and I’ll never forget his instant diagnosis: “Emily, you are having a stroke.”

At my age, no one ever expects to hear those words. But I barely had a moment to process them. All of a sudden I was being rushed to the hospital in an ambulance. Thanks to American Stroke Association guidelines, the hospital team was ready for me when I arrived.

Immediately a CT scan was performed, which confirmed an ischemic stroke, caused by a blood clot on the right side of my brain. Already a small portion of my brain tissue had died.

Looking back I am extremely grateful that bystanders at the finish line recognized my symptoms as something serious and that I got to the hospital quickly. When it comes to stroke, time is brain. Nearly two million brain cells die for every second that a stroke goes untreated.

Luckily for my type of stroke, there is a drug called tPA that can eliminate a clot and reverse the effects of a stroke, but it must be administered within a 3- to 4-hour window. I received tPA with one hour to spare.

In Washington, we have the Emergency Cardiac and Stroke System of Care. It is designed to speed up care and save lives. Calling 911 triggers the system – operators are trained to identify stroke and dispatch an ambulance, first responders notify the hospital while the patient is in transport, and the hospital stroke team is ready to diagnose and treat the patient upon arrival.

Washington stroke patients are receiving treatment faster: 48 minutes from the time they arrive at the hospital until the administration of tPA, according to the American Stroke Association, compared to 75 minutes in 2011 when the system went into effect. The goal was 60 minutes or less.

I can tell you that recovering from a stroke is challenging. It took many months of physical and occupational therapy to regain strength on my left side. I had to re-learn how to add and subtract. But today I am running again and even finished the Boston Marathon in April 2015.

I know not all stroke patients are as fortunate, but you can make a big difference. Know the warning signs of a stroke. Think F.A.S.T – F for face drooping; A for arm weakness; S for speech difficulty; and T for time to call 911.

Time is the number one factor in reducing the likelihood of death or disability from stroke. By knowing the warning signs and dialing 911, you can give someone the opportunity to thrive after a stroke and not just survive.

Emily Welbourn works as business development director for the American Heart Association/American Stroke Association in Tacoma. She previously was a volunteer with the organization.
Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.

Sunday, December 25, 2016

New Morning

I hope you enjoy the following which is reposted from a recent article in the StrokeConnection website:

A Unique Perspective on His Survival
by Stroke Survivor and Comedian John Kawie

The good folks here at Stroke Connection offer support and guidance through every step of your recovery. My column offers none whatsoever, but I think it might be time for a change. So let’s begin with that first exciting morning home and what you can expect.
1. What is home, exactly?
It is a place with no doctors, nurses, stethoscopes, syringes, bedpans, Ativan or nuclear powered laxatives. In other words, it’s a fun yet dangerous environment … a stroke survivor’s Six Flags minus the seatbelts or call buttons.
2. Is there anything there that can kill you?
Yes. Everything.
3. Will you be confused?
Very. Okay, you’re comfy and cozy sleeping soundly in your own bed when suddenly, at 4 a.m., your eyes pop open like a ventriloquist dummy. Nobody’s sticking a needle in your arm and drawing blood so you look under your bed wondering, “Where is everyone?” No worries, this is normal. It’s known as TDH, The Dracula Hangover, and it will eventually disappear. Remember, you are now a civilian who can boldly roll over and slip back into Dreamville.
4. What happens in the bathroom?
First, oral hygiene. I’m assuming you did this daily in the hospital and discovered your own one-handed technique of applying toothpaste on a toothbrush. If not, this might be the reason nobody visited you.
For a guy, shaving is second. Again, I’m assuming you mastered the one-handed method. If you didn’t, I’d recommend going Duck Dynasty and growing a beard. Otherwise, you’ll probably Van Gogh your ear trying to get your sideburns even. On the plus side, you’ll become familiar with the Department of Plastic Surgery — and who knows what celebrities you might meet!
5. Are you really going to wear that?
Congratulations, you made it through the bathroom leg of the morning unscathed ... no small feat because the bathroom is the Death Star of the home universe. You’re one bar of soap away from a trip to the morgue.
Time for the dreaded “C” word…clothes! … a must if you plan on going outside. So take the plunge and open your closet door. Even if you don’t have a large wardrobe, the visual impact alone will make you feel like you have more options than BeyoncĂ© figuring out what to wear to the VMA Awards. In the hospital, you had three simple choices: naked, hospital gown and sweats. (Correction, two — because naked and hospital gown are essentially the same thing.) But now? You’re a stroke survivor with the decision-making capability of an ill-trained border collie and your brain is about to explode.
So close your eyes, dive in, grab something and coordination be damned. Sure, your wife will call you Clarabell for the rest of the day, but who cares? You made your first decision.
6. Now what?
Now comes the fun part — Outpatient Therapy. This will be your day job for oh … roughly one week to three years, depending on your insurance, of course. With enough practice, you could go from wheelchair to cane and maybe even from cane to no-cane. Granted, you’ll be moving as fast as the line at the Department of Motor Vehicles, but at least you’re moving.
And that’s it!
You crushed your first morning. And you’ll do it again tomorrow and the day after that and so on. How do I know? Because you possess the kind of pioneering spirit exemplified by Stroke Connection readers.

Sunday, December 18, 2016


We have grown so much in the past years that we have decided to establish ourselves as a national organization called United Stroke Alliance. Retreat & Refresh Stroke Camp, Strike Out Stroke, and our Elementary Education Program, will all be a part of that. 

The official announcement was made in our Winter News Letter that just came out and I have included it below for those of you who do not get our quarterly letters. Our letters have been in paper form but starting with the Spring 2017 edition we will go digital, and I will try to include them or a link to them from this blog. That way, if you're not on our mailing list (which is nearly 3,000 addresses) you will be able to see them, too. 
Retreat & Refresh Stroke Camp has blossomed into a New National Non-Profit, and we are excited to unveil this fresh new organization for you with an expanded mission and strategy for the future. 

It all began humbly 13 years ago, in Peoria, IL with a small group of volunteers focused on the basic goal of providing stroke survivors and caregivers a “refreshing” weekend break from the grind of recovering from and living with stroke. The success of this initial altruistic venture has grown to TWENTY-EIGHT camps in NINETEEN STATES in 2016! 

Simultaneously, Retreat & Refresh launched the largest Grass Roots Stroke Symptom Awareness Campaign in the Nation with Strike Out Stroke (SOS) which has introduced tens of MILLIONS of people to the FAST (Face, Arms, Speech, Time) message over the last four years! 

But, there is more….The final program advanced for their progressive stroke awareness agenda is the Elementary Education Program focused on teaching 10-12 year old children about stroke symptoms and prevention which the students can share with their extended family and friends. Thousands of children have successfully participated in this results-oriented pilot, and now the program is ready to be launched nationally. 

Retreat & Refresh had grown exponentially beyond anyone’s imagination from its humble beginnings. Marylee Nunley and Larry Schaer knew that the organization needed strategic guidance and external management experience. In February of this year they launched an independent, fiduciary National Board of Directors. 

At their first meeting, the National Board quickly realized that the organization’s incredible growth and diverse programing needed an umbrella organization, branded so it could be recognized for the national stroke powerhouse it had become. Thus, United Stroke Alliance was formed. 

The expanded vision pillars upon which United Stroke Alliance stands are summarized by the simple acronym, PAR

Prevention and Preparation: Diet, exercise, nutrition, estate and health planning 

Awareness: Education, recognition, and action 

Recovery and Rehabilitation: Stroke Camps and support of sponsoring therapeutic organizations 

Obviously, we will not do this all at once! This vison will be implemented over time as sponsorships, donations, and partnerships are created to execute the strategy. 

With concerted effort, United Stroke Alliance will soon be recognized nationally as one of the leaders of stroke prevention, symptom awareness, and recovery and support for those affected by stroke. To drive this forward, the Board recommended a realignment of responsibilities and title to lead this new organization. 

Marylee Nunley was named Chairperson of the Board of Directors and will be the Chair for all strategic board related meetings and activities. Operationally, Marylee continues leading where her heart is and always will be as the Director of Retreat & Refresh Stroke Camp.

Larry Schaer has been named President and CEO of United Stroke Alliance. Larry’s role will entail providing strategic direction and execution of the vision of the organization. A critical success factor for this vison will be finding the sponsorships and fundraising dollars to support growth, while creating corporate partnerships to collaborate with United Stroke Alliance’s programing deliverables. Larry has been the engine behind the entrepreneurial expansion of Retreat & Refresh and SOS for years so these new responsibilities naturally fall in his executive wheelhouse. 

Our new website will be unveiled in the very near future! 

Our new United Stroke ALLIANCE includes you! YOU are part of The Plan. We need you to volunteer, to attend camp, and  help drive our vison forward with your ideas. Very importantly, we need your financial support. 

Retreat & Refresh Stroke Camp and Strike Out Stroke have accomplished miracles with limited resources. In launching United Stroke Alliance, we are taking our rightful place on the national stage, and we need your donations to take us there. Please join us by making a meaningful year-end gift enabling United Stroke Alliance to fulfill our mission as leaders of stroke prevention, symptom awareness, and recovery and support

You can do so by clicking here:, and click the DONATE button.


Sunday, December 11, 2016

Caregivers Top 10 Christmas Wishes

Amy Goyer is AARP’s family, caregiving and multigenerational issues expert. She spends most of her time in Phoenix, where she is caring for her dad, who lives with her. She is the author of AARP’s Juggling Life, Work and Caregiving. Follow Amy on Twitter @amygoyer and on Facebook.

by Amy Goyer

I recently had the great pleasure of representing AARP on The Doctors to share some of my top caregiving tips, give away copies of my new book, Juggling Life, Work and Caregiving and tell everyone about AARP’s Random Acts of Kindness for Caregivers contest. (You can watch the segment, below.) It made me think about what I really want for Christmas this year and it’s exactly that: small kindnesses that free my time, nurture my soul andminimize the stress of the holidays while maximizing the joy.

Organize and privately share crucial info with family and caregivers — Download AARP’s Caregiving App »

In that spirit, I decided to dig deep this year and share the things — realistic and not — that I’d love to receive, hoping that other caregivers will do the same. So here goes …

Top 10 Things I Want for Christmas:

10. A million dollars. Just kidding. Well … maybe not completely kidding. The financial stresses of caregiving have me on my knees like so many other caregivers, so I’d be lying if I said it wasn’t on my Top 10 list! If I can’t have a million bucks or a miracle, how about gift cards for groceries, restaurants that deliver or online shopping sites? Or even treats like coffee shop gift cards?

9. Help with holiday stuff. Trimming the tree, stringing the lights and hanging the stockings: These are all things I want to do to create a joyful atmosphere in my home for Daddy. But geez, how do I find the time? Some willing, helping hands would make these jobs easier and more fun.

8. A hot meal. It’s a huge relief when I don’t have to plan or cook a nutritious meal that Daddy will actually eat. Simple is fine. And if it involves easy cleanup afterward, evenbetter.

7. Holiday picture and cards. It would be lovely to have someone take a really nice photo of our family to have greeting cards made, then address and mail them. It’s a lot to ask, but I haven’t had time to send holiday cards in years.

6. A personal shopper. I often think about the free time I’d have if I wasn’t always rushing to the store between work and caregiving. How about picking up a few things for us when you go to the store? Bonus points for throwing in some fresh flowers.

5. Return purchases. I must have 10 things I’ve bought that need to be returned, exchanged, fixed or otherwise taken care of. There will likely be more after Christmas. Can someone return them for me? It would take me all day, but if five friends each take two items it’s not such an overwhelming task.

4. Two months of filled pill organizers. Seem like an odd request? It takes hours to get the meds organized and we fill them two months at a time. It goes much faster with another pair of hands. Help with other household or caregiving tasks like cleaning, doing laundry, changing bed linens or even yard work would be great, too. Then maybe we’d have time to do something fun together.

3. Peace of mind. When I know that Dad is content, well cared for and safe, I can better focus on the other parts of my life. Someone coming to care for, read to, sing with or otherwise happily occupy Daddy frees me to do other tasks of caregiving (and my own life). I don’t even necessarily have to leave the house.

Get discounts on prescriptions, health exams, eye care and more — AARP Member Advantages »

2. Two uninterrupted weeks at a spa. OK, if you can’t give me that, how about a gift certificate for a massage, facial, mani-pedi, float spa or other self-care experience that will help me relax and reboot? And remember backup care for Dad so I can find the time to actually use the gift certificate!

And the No. 1 thing I want for Christmas: understanding and encouragement. This may come in the form of a cup of coffee and the patient ear of a friend or family member when I’m feeling like I’m going to implode. It can also simply be a kind comment on Twitter or Facebook or here on my blog, or a greeting card that acknowledges my challenges and expresses faith in my ability to forge ahead. Caregiving can sometimes be a lonely experience; knowing I have support means the world to me.

I hope this gives my fellow caregivers ideas of what to ask for this year — and gives the rest of youideas for acts of kindness to offer as gifts for the caregivers in your lives. I plan to offer some kindnesses to other caregivers I know, too.

Meanwhile, I’ll let you know if the $1 million shows up!


Sunday, December 4, 2016

Suggestions for a Simpler Post-Stroke Holiday

The following article was written with stroke survivors and caregivers in mind. However, many people who lead otherwise normal lives have trouble coping with the month of December. There are many reasons why this happens. If you need help coping, I have a book recommendation for you:

"The 12 ways of Surviving the Holidays by Monica vest Wheeler - A quick and thought-provoking guide on how to make it through the busiest and most demanding time of the year, 'the holidays.' The traditional holiday season of Christmas isn't easy for everyone. It can create a wave of good and uncomfortable emotions and circumstances.

This conversational ebook is a perfect gift to yourself or a loved one or friend as it focuses on stepping away from guilt, how to forget the perfect holiday, coping with grief and loss, and so much more!"

It is one I bought myself last year and I intend to read it every year around this time. It was written and published by Monica Vest Wheeler who is a professional photographer and writer who has written other books on issues involving damage to the brain. Monica is also an active volunteer with Retreat & Refresh Stroke Camp. 

I bought the digital version of her book for $1.99 on titled "The 12 ways of Surviving the Holidays". It can be read on any device with the Kindle app which can be downloaded free.
The following article was written and published on the StrokeNet Newsletter web site by Deb Theriault. Deb is a Senior Contributing Writer and Information Resources Administrator at Strokenet:

"Many stroke survivors have found ways to make all kinds of activities easier. Deb shares some of her ideas to make the holiday season easier. It is not necessary to replicate what has been done for decades or even generations!" - Strokenet

You may contact Deb at

Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with you readers, with permission from the StrokeNet staff, of course. 

By Deb Theriault

Stroke makes everything more difficult: activities of daily living, running errands, working, home maintenance, and just about everything else from A-to-Z. So it’s no wonder that the biggest holiday season of the year creates special challenges for stroke survivors and their caregivers. Like everyone else, they want to find ways to enjoy the holidays, and to create wonderful holiday memories. But, how can a survivor or their caregiver do this when in “post-stroke mode?”

I’d like to share a few things that I’ve learned about creating a simpler holiday season. Hopefully, one of these will help you to get more out of your own holiday.

Holiday traditions can be “remodeled.” It pays to revisit your holiday traditions now and then, and post-stroke is a good time. Some traditions are just too “high-maintenance” for an energy-sapped stroke survivor, or a time-strapped caregiver.

After I had my last stroke, I had to decide which “holiday rituals” would be the most deserving of my time and limited energy. This was difficult to do, from an emotional standpoint, however it made my holiday more meaningful that year. Since then, I’ve made it a point to revisit my old traditions each holiday season.

Tip: Hold on to the most meaningful traditions and rituals, while pruning out those that no longer “speak” to you. You can also simplify existing traditions, or create new ones, as necessary.

Be honest with yourself about your likes and dislikes, but don’t let guilt be your guide. Instead, identify those traditions that make you feel the happiest, and let the remainder go.

Simple, inexpensive decorations can be beautiful. I used to love to decorate for the holidays. I still do, but it can consume too much of my energy. So, instead of putting lots of “eye candy” everywhere in my home, I highlight one area to decorate in several of the rooms (the living room gets a little more attention, since it’s where our Christmas tree resides). 

Sometimes I only decorate two or three areas in the entire house (for example, the foyer and living room or the mantle, entranceway and dining room sideboard). In fact, just placing large holiday bows in a few high profile areas is enough to set a holiday tone.

Tip: I’ve found that floral and fruit craft “picks” are a real time-saver for holiday decorating. Picks can be purchased at just about any craft store, such as Michael’s, JoAnn’s, or Pat Catan’s. Pre-stroke, I used to meticulously decorate our Christmas tree with many ornaments and embellishments, but now I rely on decorative picks in different colors and “themes”. It’s surprising how easily, and quickly, you can pull together a lovely holiday tree (as well as holiday arrangements and wreaths) by just using picks.

It’s ok to let others do the “lion’s share” of holiday cooking and baking. Family members may expect you to carry on your family’s cooking tradition by preparing many of your family’s special foods. But, unless you really have the time and energy to do this, consider passing this responsibility on to others.

Tip: If you can, have photocopies made of your family’s recipes and pass them on to younger members of your family, so that they can continue the family cooking tradition. I’ve even heard of people making “scrapbooks” of their family’s recipes, complete with copies of pictures that span several generations. (This makes a nice gift.)

“Well body” relatives make great holiday dinner hosts. I “look healthy” so my family thinks that I can still do everything, but, alas, I cannot. I may be able to manage one more holiday dinner, but soon I’ll have to face reality. Running these festivities gets harder with each passing year, and being in post-stroke mode is just speeding up the inevitable. 

Tip: Tell your family that you’d love to host the annual holiday dinner but that you need to take a break. Think about it: you’ve done your share of work over the years. Now it’s time to hand the hosting responsibilities over to others. Even if you think you can pull it off, let others do the work, and just kick back and enjoy their efforts. 

If you do decide to host a holiday meal, have your local supermarket prepare your turkey, ham, or other entree, plus the dessert(s), so that you only have to deal with side dishes. Even better, make the meal “pot luck.” Give others the opportunity to shine by having them share their own special dish.

It doesn’t take a lot to create the best holiday memories. I used to let the holidays slip by without doing something “just for fun.” But after my last stroke, I realized that I need to punctuate the holiday season by participating in at least one memorable activity. 

Tip: Elaine St. James, author of “Simplify Your Christmas”, suggests recreating beloved memories from your childhood. Just think back to what you loved most about Christmas when you were young and then recreate it (you can apply this to any holiday). 

St. James says there’s a good chance those special memories were more about simplepleasures like the smell of a fresh cut holiday tree, looking at holiday lights or spending quality time with your family. Most of these types of memories can be recreated pretty easily, so give it a try. Even if it’s an “abbreviated” version of what you used to do before your stroke, or before you became a caregiver, set aside the time and energy to do one simple, fun thing that says “holiday” to you.

Sunday, November 27, 2016

Unwrapping the emotions of the holidays

Monica is a professional photographer, author, and volunteer for our stroke camp and for other camps dealing with other types of brain injuries. I bought her book on surviving the holidays last year and I highly recommend it. Sometimes we don't realize why we don't feel as happy around the year end holidays we think we should. I mean, why not?! Her book will help you through that.

By Monica Vest Wheeler

Yes, ‘tis the season for THAT holiday spirit … which means something different to each of us human beings who recognize traditional and ceremonial dates as winter and a new calendar year blow our way. In the United States, Thanksgiving and Christmas are the most widely celebrated and “legal” holidays.

However, not everyone is enthused about the arrival of THE holidays, and there are more people dreading this time of year, many, many more than you think. If you feel that way, you're not alone.

It's not that most of us are not filled with genuine thoughts of thanksgiving, but the stress of putting on a “happy” face non-stop for six or seven weeks can be exhausting, emotionally and physically. So much is expected of us this time of year that it's easy to put ourselves on automatic just to survive. Automatic can be good at times, but not necessarily during the “most wonderful time of the year.

I admit that I do struggle with the holidays and have for years. I remember tragedies and losses during these closing weeks of the calendar year, and the ink of those impressions have a sense of permanency simply because of when they happened. And I am not alone.

What I have discovered is that it's all perspective, and everyone has one, as unique as our DNA. While we cannot force someone to change that perspective, we have the power to influence those thoughts and observations in a positive, loving, supportive way. And it's not done in the noisy parade of the holidays, but the quiet corner of personal connections this and any time of the year.

It's all about listening and sharing. It's about helping unwrap the complicated emotions of the holiday experience one layer at a time. It's about exploring the deeper meaning of our human bonds.

It's about unwrapping and sharing yourself, the real you, perhaps the most precious gift of all.

If you'd like to read more about this topic, please consider checking out the following:

Sunday, November 20, 2016

November - National Family Caregiver Month

November - National Family Caregiver Month

As a caregiver do you feel frustration, irritation, anger, even guilty? Guess what? According to the experts that's normal during the course of caregiving. The challenge is for you to recognize this and learn how to manage it. I hope you find something in this post that will help you.

This is from the Support Network website:

On some devices the two following links will download a pdf file if you open with your browser. If you get the choice, it might be best to open with a pdf viewer, if you have one, otherwise you'll have to search your device for the pdf file, but it will be worth it. 

Click here for a Caregiver Guide To Stroke.

Click here for a Finances After Stroke Guide

Also...Give thanks to your unsung hero!
Caregivers give so much of their time, their hearts and themselves to the people they care for. They ensure the big and little things are taken care of for you during recovery – from brushing your hair to driving to doctor visits. November is National Family Caregivers Month and we are urging you to honor the caregiver in your life by posting their picture and a thank you note on the Support Network.

Instructions: Participation is simple!
1. Take a picture of your caregiver, be as creative as you like.

2. Email it to We will tag it with a Caregiver “Thank you” frame and upload it, plus your Thank you note here on the photo gallery
designed especially for this: 

3. Once it’s up we will send you an email so you can let your caregiver know about it.

Submit your photos to us between November 1st and November 30th.


Monday, November 14, 2016

The emotions of capturing Stroke Camp

By Monica Vest Wheeler
Retreat & Refresh Stroke Camp Staff Volunteer

There's no better job in the world than being a volunteer for Retreat & Refresh Stroke Camp, and being able to capture so many special memories with my camera makes the experience even more priceless.

I had no idea when I starting shooting photos at my first camp in June 2008 that I'd create this obsession with photographing people and amass this collection of thousands and thousands of images. But what I witnessed was amazing and beautiful from Day 1, and that love continues to this day.

I give so many thanks to Marylee Nunley, executive director of Stroke Camp, who invited me to find my own way to reach out to stroke survivors and caregivers. She has this unique ability to bring out the talents and skills of volunteers during that service to campers. That experience truly changed the course of my life in the best way possible.  

I'm extremely blessed to have about 70 of my favorite and the most meaningful photographs I’ve shot in the last nine years, on display during November at the downtown gallery of the Peoria Public Library. Many of these images come from the 89 Stroke Camps I've attended across the country, in addition to the traumatic brain injury camps I connected with starting in 2012.

If you're in the Central Illinois area, please stop by to see me and the exhibit at a special reception at the gallery in downtown Peoria from 1-3 p.m. Saturday, November 19. You'll also find display cases filled with examples of assistive devices on loan from Stroke Camp.  

Here are just a few samples of the many photos I've shot at Stroke Camp in the last nine years that you can see at the display.  ­

Saturday, November 5, 2016

Honoring Larry Morris

October 2016 ended as a very sad month for us. We at Retreat & Refresh Stroke Camp lost a great friend, volunteer, and ambassador, Larry Morris. 

CMSGT Larry "Chief" Morris, 75, of East Peoria passed away at 10:20 p.m. Sunday, Oct. 16, 2016, at Snyder Village in Metamora, Illinois.

Larry was with the Peoria Air National Guard for 35 years, retiring in 1994 as Chief Master Sergeant, being one of the youngest to achieve that rank. He was a member of the Retreat & Refresh Stroke Camp since its inception in 2004 and served as a founding board member.

Larry, along with his wife and caregiver, Georgia, have volunteered at our camps since its inception in 2004. Larry survived his stroke for 18 years and in the last eleven years with us he gave hope and comfort to hundreds of other stroke survivors, sea to sea, border to border, across our nation. He is and will always be greatly missed.  

"Larry and his wife Georgia have been active as Board members and volunteers at Stroke Camp since the very first camp in 2004. Larry was an inspiration to all survivors he met all across the country. We will hold dear many very special memories. We know that Georgia will continue to bless us with her volunteerism through the next phase of life. We certainly are better for having known Larry, who was loved by all." - Marylee Nunley, Executive Director Retreat & Refresh Stroke Camp

Larry receiving an award from Marylee in 2009 for best dressed camper

Larry loved to fish - 2010 at the Tiskilwa, Illinois camp

Larry showed he still had the touch the next year at the Lincoln, Nebraska camp

Larry with his wife Georgia on the way to a 2011 Kentucky camp

Larry with Cheri, one of his daughters and camp volunteer

Larry getting into the 1960's spirit at the 2005 camp  

Larry wore many hats as a volunteer ambassador for the camp

Larry was Chief Master Sergeant in the Air National Guard prior to his stroke so the following site had a very special meaning to him. We were on our way to one of the Lincoln, Nebraska stroke camps and he and Georgia wanted to stop and see this. It's called Freedom Rock. 

I have a lot of good memories with Larry and Georgia. Some of them involved traveling with them to out of state camps. Normally all our camp crafts, supplies, skit things, audio/visual equipment, drum circle instruments, etc. are hauled in the camp van but sometimes we have two camps scheduled for the same weekend so we need another way to get the stuff to the second camp. They had a truck with a hitch, the camp had a trailer full of stuff that needed towed, and I knew how to drive. Perfect! 

My other memories are going out for lunch back home every so often with him and John Nunley, a stroke survivor also, co-founder of the camp and husband of Marylee our Executive director. I liked those lunches and traveling with Larry. Yes, Larry is missed.

Monday, October 31, 2016

Stroke survivor finds a ‘new normal’


Kristen Powers, an athlete throughout her adult life, was doing a training ride for an upcoming half Ironman competition, when she had a minor crash.

With a gashed forehead, the then-33-year-old from St. Petersburg, Florida, was taken to the hospital, stitched up and released. She was chatting on the phone as she sat in her car in the hospital parking lot when the phone suddenly fell from her hand.

She couldn’t pick it up. In fact, she couldn’t feel anything on her right side, and her face was drooping and her speech was slurred. Powers was having a stroke.

Her husband, Jason, rushed her back to the hospital, where it took five hours of testing for doctors to confirm a blockage was cutting off the blood supply to her brain.

Stroke is the No. 5 cause of death in the U.S. and a leading cause of long-term disability. Most strokes can be prevented by controlling risk factors such as high blood pressure.

In Powers’ case, her stroke in 2011 was caused by a piece of fibrous tissue that was removed with a clot-snaring device. The tissue came from an undiagnosed tumor on her mitral valve, one doctors said may have been there since birth.

Once the blockage was removed, Powers had a long recovery to relearn how to speak and run. She set aggressive goals from the outset.

“I told my therapist that first day I wanted to run a 5K,” she said.

It was a goal she’d reach within three months.

On Jan. 1, 2012, Kristen Powers rode her bike for the first time since her stroke in 2011.

Powers also had intensive therapy to regain her speech, training her facial muscles to form words and helping her brain to find the right words and accomplish daily tasks.

“I had to rewire my brain for everything from tying my shoes to writing my name,” she said.

The experience affected her in other ways. Normally an outgoing, vocal person, Powers found herself reluctant to jump into conversations like she did before her stroke.

“It was hard for me to follow conversations,” she said. “By the time I could process it and come up with something to say, the conversation had already passed.”

Kristen Powers with her husband, Jason, at the Marine Corps Marathon in October 2012.

It was a difficult time for Powers, who had a degree in journalism and worked in marketing and communications. It took a year of therapy before Powers was able to completely regain her cognitive and speech patterns.

“It was like someone had taken it away from me and I had to fight to get it back,” she said.

Powers worked to maintain a positive attitude the first couple years after her stroke, but would occasionally find herself suddenly overwhelmed by emotion.

Now 38, she’s more reflective about her experience now, and says she is grateful to have largely recovered to her “new normal.” She still runs marathons and cycles, but had to back away from triathlon events after finding she tired more easily.

“I really became an activist,” said Powers, a longtime volunteer with the American Heart Association. “I’ll take any opportunity I have to speak about my experience or raise awareness about stroke.”

At times, her right side still causes difficulties. She’ll scuff her toes and sometimes tumble. Crowds occasionally overwhelm her and the elegant penmanship she always prided did not come back.

“If that’s the worst of it, I think I’m okay,” she said.

Photos courtesy of Kristen Powers

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