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.

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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.

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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.