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

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, October 23, 2016

Instead of the Arena

Instead of heading to the arena, former NBA athlete went to the emergency room for stroke.


Former NBA player Juaquin Hawkins was finishing a series of road games with his basketball team in Australia when he reached to turn on the faucet and the finger tips on his right hand began to tingle, a feeling that quickly ran up his arm.

“I thought that my arm was numb from sleeping on it,” said Hawkins of the morning of Jan. 1, 2008. “But then I got this throbbing headache, like someone was hitting me with a bat.”

He felt nauseated and his vision blurred, so he returned to bed, thinking maybe he just needed to lie down. Instead, the symptoms worsened and his right arm wouldn’t move at all. He decided to go look at himself in the mirror and everything looked normal, until he tried smiling and saw the right side of his face droop.

“I was so terrified, that I just looked away,” he said. “If the idea of a stroke came into my head, I immediately pushed it away. I was a 34-year-old professional athlete. I thought strokes were something only the elderly experienced.”

Hawkins’ roommate had already left for breakfast with the rest of the team. During this time, Hawkins, in the room by himself, decided to revisit the mirror to see if his face was still disfigured. Taking one step from the bed he immediately crashed to the floor. The entire right side now had no feeling. He found a way to drag himself to the door to retrieve some help — but after opening the door he found the hallway empty.

He began to panic.

“I knew something was really wrong and was just trying to brace myself for whatever was going to happen next,” he said.

Hawkins could barely make out the word “doctor” by the time his roommate returned. But when the team masseuse arrived, the feeling in Hawkins’ right side had returned. Very uncomfortable and after repeatedly asking to be taken to a doctor, the team officials didn’t realize the urgency and insisted he get to the airport and accompany the team on the last flight of the day to the next game.

During the two-leg flight, Hawkins felt agitated. His speech stuttered, he had a throbbing headache and felt weak. After checking into the team hotel, he was taken to a hospital and diagnosed with dehydration with no additional testing done. He was given intravenous fluids and discharged after a few hours.

The next day when he woke up, he began to feel nauseated again and was unable to hear out of his right ear. Eventually the team officials were able to take him back to the hospital where a CT scan showed bleeding in his brain.

Hawkins was shocked when the doctors told him that he had suffered an ischemic stroke and may never play basketball again.

“I just said, ‘I can’t have a stroke, I’m a professional athlete and I have a game tonight,’” he said.

Hawkins’ diagnosis came 27 hours after his first symptoms appeared. It was too late for the clot-busting medication tissue plasmogen activator. He was given anti-clotting medication and he stayed in the hospital for a week. During that time, his speech and cognition became impaired.

“It got to the point where I couldn’t tell the difference between a circle and a triangle, or read a sentence,” he said.

While he didn’t lose the ability to walk, he felt weak and struggled to maintain stamina.

Hawkins finished his season off the court and would spend the next three months undergoing therapy to recover his speech and memory, as he continued to stutter and experience aphasia for almost three years. He’d confuse his daughters’ names at times and had difficulty maintaining a conversation.

“It was embarrassing for me, so I found myself just not talking, shaking my head or nodding instead,” he said. “I was always worried I’d say the wrong thing.”

He also experienced severe depression and went into a financial crisis after not being employed for quite some time. That caused him to lose his home. He moved his family between hotels and the homes of friends and relatives before getting back on his feet.

After some time, Hawkins did return to the court prematurely but after a year he decided to officially retire. His 14-year career had included teams in five countries. In the NBA, he played briefly with the Los Angeles Lakers, Los Angeles Clippers, Milwaukee Bucks and Golden State Warriors during preseason training before joining the Houston Rockets during the 2002-2003 season.

He found a new path as a coach, working with area schools to provide athletic and mentoring programs. He also started Hawk Hoops, a youth mentoring and basketball program teaching players the fundamentals of basketball and to play in tournaments locally and nationally. His teams competed earlier this year in the Annual Mercadel/Hawk Hoops stroke awareness tournament. Earlier this month, they played in the AVAC Hoyas and West Coast Power Alliance’s Stroke Awareness Basketball Tournament in Seal Beach, California.

At times, Hawkins will speak to his players, their families and outside organizations about his stroke experience.

“It’s a big part of my life now,” he said. “It made me a better person and gave me an experience that I can use to educate other people on how to deal with stroke or hardship in general.”

In addition to Hawk Hoops, Hawkins is a paid motivational speaker. He also published a book about his experiences called “A Stroke of Grace.”

Over the last several years, Hawkins has shared his story in media interviews, volunteering as an American Stroke Association national Power to End Stroke ambassador in all communities, but with a special devotion to black communities.

Blacks have almost twice the risk of first-ever strokes compared to whites, and experience higher death rates due to stroke.

In 2010, Hawkins received a “Power Award” from the ASA for the volunteer work he’s done, both nationally and throughout Southern California.

“Raising awareness is very powerful for me,” he said. “Every time I talk to someone who has had a stroke, we connect immediately. I feel so grateful that I can give inspiration to others to keep working toward recovery.”

Doctors aren’t sure why Hawkins had the stroke. He did not have a family history or any risk factors.

Today, he lives near San Bernardino, California. He continues to take a daily aspirin and tries to maintain a healthy lifestyle by eating the right foods.

Now, 42, he still experiences some effects from his stroke. His right side gets colder than his left, and he can’t drive more than 45 minutes without his right leg feeling like it’s falling asleep.

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, October 16, 2016

Oh, We Are Going to the Hospital

The following personal story was published on the American Heart Association web site:
My daughter suffered an acute ischemic stroke on 8/23/2014 while moving into her college dorm at the age of 17. Luckily I was there and knew what was happening. She fell on the floor and was paralyzed on her left side, unable to speak clearly. I had the roommate sit with her while I ran to the security desk for them to call 911. Ambulance arrives, starts taking information and her symptoms go away, they suggest maybe we don't want to go to the hospital now?

I said oh we are going to the hospital, why would they even offer that? Had I not been there what would my 17yr old have said?

Rushed to Lankenau because once they had her on the stretcher she was paralyzed again on left side. Once at Lankenau Hosp the neurologist in the ER says to me "well either she is having a stroke or she is faking"! So you know I let him have an ear full! Then she comes back from MRI and they confirm, deep clot in right side of the back of her brain.

They explain to me what the up and down side of administering tPA. I give permission to administer and hold my breath that its not a bleed. By now my husband has arrived at the hospital and we just can't figure how this has happened. She is moved to ICU and the next afternoon she is transferred to Childrens Hospital of Philadelphia. She is only 17 and they are better equipped to treat her.

After one week there and many tests to find out why, we still are not 100% sure. They feel that her Lipid A was elevated and with hormone from her birth control, that is what caused the stroke. She was transferred to inpatient rehab for two weeks and then discharged to outpatient rehab, which she followed for 10 months. She was able to start college the Spring of 2015 while going to rehab locally.

While inpatient we discussed getting a tattoo which she had asked me for many times before and I always said no, Her stroke made me realize I had to put things in my life in perspective. I said yes, but make the tattoo meaningful to you and not some guys name or some silly picture you will regret. She had the date of her stroke tattooed on the back of her left shoulder! She said in her instagram picture of the tattoo, "People tell you not to get a tattoo because they are permanent, but this day will always remind me that life itself is temporary"! How can I argue with that!

My daughter will be starting her junior year in college in the fall and she had a full scholarship that day 8/23/2014 to play basketball on the Woman's Division I team there at Saint Joseph University in Philadelphia, PA! They have honored her scholarship and she has worked endlessly to get back to where she was that day. The season starts November 2016 and we are hoping and praying she is on that court in her uniform for which she worked so hard for!

Reading all of your stories, I think we each gain something from each other and puts life in perspective with what each of us has lost, gained and shows the true strength that lies within each of us. Best of luck to all of you in your lives and recovery! Like Prince's song, We are trying to get through this thing called Life!

American Heart Association

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


Sunday, October 9, 2016

Caregiving: Then Reality Sets In

The following article was first published on the Care Partners Resource web site ( in April 2013. The author, Lori, is also the owner of the web site and a volunteer at our Colorado Stroke Camp. I encourage you to visit her site for
excellent articles and help on caregiving.
When you’ve said YES to Caregiving: then reality sets in.

Posted by Lori (click the blue link to see her site) on Tuesday, April 16, 2013.

Most people have no idea what comes with saying “YES” to caring for a loved one. What do you do once you have said yes and then realize it is more than you bargained for? Maybe it is an immediate “oh no this is more than I can handle,” maybe after a short while you realize you aren’t cut out for this or perhaps you have been caring for your loved one for a while and things have changed so you to no longer feel able to meet the needs of your loved one or yourself. There are many reasons you could feel in over head and with that decision comes: guilt, a sense of failure, betrayal or fear of judgment.

Is it fair to judge yourself for being honest? Is it fair for others to judge you? The answer to both is NO and yet we cannot help but do it. I am sure many of us have had feelings that this is just too much but feel there is no way out. We continue to go on as we have for many reasons, the emotions mentioned above or money or you simply don’t know how to make a change.

A friend recently told me something that resonated in many ways. She asked “how often have you made a commitment and for whatever reason you realize you can no longer honor your decision?” She followed up with this very wise advice: Ask yourself are you now continuing to honor the promise to your loved one (or the person to whom you have made the commitment) or are you just committed to the commitment? Is this truly doing the honorable thing or are you becoming a martyr?

As a caregiver I was faced with this decision many times. I was fortunate to have finances and a supportive family that allowed me to not only do what was best for our mom but also care for myself in the process. Our care plan changed many times over the 8 years.

Many caregivers are not met with support when they voice their challenges. There is often judgment and resistance from family members and friends. Some caregivers have no one to help them during these challenging times. And even with support there often is self criticism and doubt.

How can you find solutions to alter your care plan that also honors the commitment and your needs? Here are some steps to help begin the process:
Identify the challenge(s). Be specific, can you see how each of these may have different solutions?

– I am exhausted
– I am depressed
– I feel isolated and alone

2. Ways to identify the challenge. Start by making a list and then try to identify what is causing the problem. Often the original challenge is not actually the problem.

– EXAMPLE: You may think the challenge is you have lost your patience. But you discover the problem is you are exhausted. Once you think about it you realize the reason is not due to lack of sleep but due to depression.

3. Work on one challenge at a time

4. Start your search to solve the problem: Seek help from a professional

– A good place to begin is mentioning the situation with your loved ones physician

– Seek advice from other caregivers. There are many support groups in most areas or on-line
– For many common caregiving challenges you can get solutions by using an organization like Family Caregiving 101, National Stroke Association or The Area Agency on Aging,, just to name a few. Most of these organizations have on line information and someone you can speak with.

– If you are stuck try Google or Bing they can be great resources. Just type in your problem

It may be that even after this research you still feel unable to continue on in the role as caregiver. There are resources and funding to help in finding alternative care in most cases. Ask about alternatives when you are researching assistance. Finally no matter what you decide is the answer be gentle with yourself. Caregiving is not easy and not for everyone. Taking good care of yourself is the best way to care for your loved one!


Sunday, October 2, 2016

Brainrain Before The Strokelight

I am reposting the following incredible, personal story taken from the American Heart Association's web site, Support Network:

Hello and thank you for allowing me to share my story.

It was Saturday afternoon and I was home alone trying to rest. It had been a very challenging week at work. I had fallen asleep in the recliner.The clap of thunder startled me from my restless nap. I stumbled to my feet and leaned against the wall for support. I was in pain. Again.
I walked into the living room still holding o
nto the wall. I felt the rain falling slowly at first. But it couldn't be raining. It was February. . . in Illinois.
The outdoor temperature was well below freezing. Usually snow is the only precipitation falling from the sky around here in February.

But this day was quite different. The rainstorm I felt wasn't outside. The rainstorm was inside. It was inside my brain. But how was it raining in my brain? That’s not even possible, is it? Yes it is. The rainstorm was BrainRain. Yes. BrainRain. The BrainRain was flooding my head. The BrainRain was flooding my body. I didn't know it at the time but this BrainRain was a stroke. I was having a hemorrhagic stroke. My brain was bleeding in multiple places and I had no idea what was happening.

The pain in my brain was hot. The pain in my brain felt wet. The pain pulsated at the top of my head and trickled down the left side of my head, like fingernails scraping across a blackboard. The pain in my brain was traveling, plunging deep inside the soft, gray tissue of my brain. It was unbearable pain, inside my brain. At the same time, I noticed an unusual taste in the left side of my mouth. It tasted a lot like metal. It tasted like the smell of an ammonia-based household cleanser. You know the smell, right?Where did that come from? What was that awful taste?

I tried to speak, tried to say something, tried to yell hoping to release the pain. All I could muster was a moan. It was a moan that crawled up from my belly. I kept leaning against the wall for support. I still didn't know what was wrong but I knew I separately needed help.

Suddenly, I felt another clap. The clap felt like lightning had struck. It hit at the very center top of my skull. The pain was sharp. The pain was burning. That clap was followed by a popping sound in my head. My knees buckled and my right arm and leg dangled at my side. I slid down the wall, inched myself over to the couch and leaned against it.

I looked at my right arm. I could see my right leg and my right foot. But I couldn't feel them. They were foreign to my body. My brain struggled to connect with them, trying to understand why they were just lying there on the floor in an unusual position, doing nothing.

My brain was trying to talk to my arm, struggling to tell my leg, “Move. Get up. We gotta get UP.” But no words came out of my dry mouth. My limbs could not and would not obey my thoughts. And my thoughts were swirling. My thoughts were spinning out of control. What should I do? Where did my arm go? Should I call, who did this, why doesn't my arm move, what is, how did, whaaaat!

The heat in my head seemed to become hotter. It felt like fire. Was my brain on fire? I slowly raised my left hand to my head, afraid of what my fingers might find. One by one, my fingers gently searched my scalp. Hmmm. Nothing wet. No flames but I needed to call someone for help. This was a brutal storm. The thunder, the BrainRain, the dangling arm and leg was too much.

I had no idea this emergency, this BrainRain would change my life. I didn't know this emergency would change me and impact my family and friends. I wasn't aware the BrainRain would thrust me unprepared into a new adventure. I grabbed my cellphone. I couldn't understand what to do at first but finally saw a familiar number in my phone directory. I hit the speed dial button. My sister answered her phone and came quickly.

The ambulance took me to the nearest community hospital. That hospital transferred me to another hospital in the city and I spent two days there, according to my sister. I don't remember a thing. The nearest certified stroke center was UI Health in Chicago. I was transferred there from a community hospital. At the hospital, the doctor asked my family to step outside my room so he could speak with them. At the time, I was in and out of consciousness asking for somebody, anybody, to rub my head, hoping for some relief. The doctor gave my college-age son and my sister the bleak news. His words
were short and his tone was very serious.

"Intracranial hemorrhage. Quite serious. The most fatal type of stroke. She has thin, ruptured arteries. Lots of blood in and on her brain. Her brain is swollen. She's having seizures and clots in her legs and lung. We'll do our best but don't know if she will make it. We'll keep you updated."

The moments in ICU stretched into hours and the hours stretched into days. Family and friends kept vigil. My condition worsened and I had to be intubated. My family and friends hoped for the best and prayed for a miracle. As the days turned into weeks, I began to slowly improve. The doctors were shocked. The Lord had answered the prayers with a resounding “YES”. The bleeds began to heal and the swelling subsided. I regained some use in my right side.

The Lord used UI Health to save my life and assist me in recovery and renewal. They weren't able to find the cause of the bleeds. Even after five brain angiograms and thorough full-body testing, they didn't find a direct cause. I didn't have any of the risk factors: never smoked, not a drinker, no diabetes or HBP nor AFib. But as a result of this experience, I am more vigilant about my eating and exercise. The neurological education has been a great help.
I'm thankful to learn so much about our incredible brains.

UI Hospital was home for nine weeks the first time, and approximately ten days with the second BrainRain stroke. I needed surgery on my brain to remove the second bleed. I was discharged with a wheelchair and other assistive equipment. The therapists sent me home with a large packet of exercises, self-care tips and taught me how to walk with a cane and AFO. I needed professional home care the first couple years. My family and friends
were extraordinary. They drove me to my doctor appointments, cooked, shopped, cleaned, helped me manage my finances, cried and prayed with me.
I could not have made it without my sons, sister and my friends.

I am so grateful for the wonderful acute physical and occupational therapy and outpatient therapy which continues even today. It has been seven long years and I have never given up hope. I do have a number of deficits-field cut, foot drop, weakness in the affected arm/leg, some cognitive challenges and chronic headaches. I see these deficits as an opportunity to learn and function in new and different ways.

I am thankful for the BrainRain. That might sound odd but let me tell you why I am so thankful.
When a severe rainstorm occurs, there can be uprooted trees, damaged tree branches, flooding and inconveniences. The rainstorm in my life, the BrainRain, caused some 'uprooting' in my life. I needed to remove some things. I got flooded with many changes. Many of them were necessary.
The 'tree branches' in my life were pruned and are still being pruned. I'm still growing and learning.

Yep. It was painful. I definitely would not have pulled up to a drive-through window and ordered “One BrainRain to go, please.”
Definitely not.

But the BrainRain refreshed my thoughts, my relationships, and my health. I now have an opportunity to serve as co-leader of the Living After Stroke support group at the hospital. As I visit and encourage other stroke patients, they strengthen me. I've also had the opportunity to do some stroke public service announcements on local television during his past National Stroke Awareness Month.

BrainRain has given me the chance to serve in various capacities, in my local fellowship and in the community. I’m currently working on my first nonfiction book. It is designed to encourage and empower other stroke survivors to be champions. My book will outline a practical 5-step framework to uncover hurt and develop hope and healing. I'm looking forward to sharing the book with you later this year.

I've gained new friends and met some amazing people. Without having the strokes, I would have never met these friends or had such wonderful experie
Yes. I am thankful for the rainstorm, the clap of thunder and the lightning.
I am grateful for the BrainRain.

©Marshelle Samuels, StrokeLight: Uncover 5 Steps to Heal Your Hurt and Have Hope Again, (Columbus, Ohio, AAE, 2016)

Thank you.

Posted by StrokeLight2B on Jun 13, 2016 3:26 AM CDT

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, September 25, 2016

Are You Feeling Stressed.

I came across this app the other day that can be used on either a tablet or cell phone that I thought would be useful for many of you caregivers.

Breathe2Relax (click the blue link to see the site)
Cost: Free (iOS/Android)

This app is a “portable stress management tool” that teaches you diaphragmatic breathing, a technique that’s been taught for centuries as a way of reducing stress and decreasing the body’s fight or flight response. Choose the breathing cycle that’s right for you, and the app makes it easy to practice. As you develop your skills, you can begin to “belly breathe” as you walk, drive, watch TV, attend meetings and perform other everyday activities.

Breathe2Relax is a portable stress management tool. Breathe2Relax is a hands-on diaphragmatic breathing exercise. Breathing exercises have been documented to decrease the body's 'fight-or-flight' (stress) response, and help with mood stabilization, anger control, and anxiety management.Breathe2Relax can be used as a stand-alone stress reduction tool, or can be used in tandem with clinical care directed by a healthcare worker.

Capitalizing on touch-screen technology, a user can record their stress level on a 'visual analogue scale' by simply swiping a small bar to the left or to the right. Breathe2Relax uses state-of-the-art graphics, animation, narration, and videos to deliver a sophisticated, immersive experience for the user.

What is the purpose of Breathe2Relax?

Breathe2Relax was developed to teach a skill called diaphragmatic breathing, sometimes called "belly breathing". This kind of breathing has been taught for centuries as a way of turning on the body's relaxation response. This app, using smart phone technology, allows you to learn and practice this skill on your own or as part of a stress management program supervised by your healthcare professional. The app also provides detailed information on the effects of stress on the body which you should become familiar with.

Can I use diaphragmatic breathing to help during very stressful situations?
Yes, it can be useful during highly stressful situations, but it's important to understand that it is not an immediate antidote to high stress. Diaphragmatic breathing will not immediately slow a racing heart or filter adrenaline from you system. Many people make the mistake of trying to use the skill only during times of high stress, and when they don't feel immediately better, they conclude that it doesn't help. Like any stress management skill, diaphragmatic breathing requires practice and regular use.

Am I supposed to close my eyes (I feel more relaxed that way)?

During the initial learning process it's best to keep your eyes open so you can watch your stomach as you practice breathing from your diaphragm. You'll want to see your belly rise and your chest stay motionless as you breathe. After you're confident that you have mastered the skill, you can certainly close your eyes if it helps you to relax. Remember though, that the best results will occur when you develop the habit of belly breathing as you go through everyday life, walking, driving, watching TV, etc.

How often should I practice?

Practice as often as you can. One of the advantages of having this information on a smart phone is that your practice opportunities are available anytime you have your phone with you.

Can I use headphones?

Yes, as long as they are comfortable. The audio instructions are important as you begin to practice this skill and you should make use of them whenever possible.

Do I have to practice lying down? What if I want to use this out in public?

Practicing while you are lying down isn't necessary to learn this skill. If, in the beginning, you have any difficulty breathing from your belly however, lying down with a book on your stomach so you can watch it rise and fall as you breathe, can be a great help to make sure you are practicing the skill correctly. As you get more comfortable with the skill, practice it whenever and wherever you can. The goal is to make this your natural way of breathing.

How can I slow down/speed up the pace of the breathing exercises?

In the Practice area of the app you can use the Shorten or Lengthen buttons to change the pace of the breathing exercise to match a pace that is comfortable for you. You can also set a pace for inhaling and exhaling by going to Settings > Cycle Settings and following the instructions for using your natural breathing cycle as the basis of the practice settings. You can also change the number of practice cycles in the Practice exercise from the default setting of 16 cycles.

Are there any cautions I should be aware of regarding diaphragmatic breathing?

For persons with lung problems or those who simply have a weak diaphragm, this exercise might be tiring at first. Be sure not to overly strain or injure yourself and stop if you begin to feel discomfort. If you have serious pulmonary issues, consult a doctor before attempting diaphragmatic breathing.


Sunday, September 18, 2016

Expressing Creativity Through Music After Stroke

The following article appeared on the Stroke Connection web site:

It features our very own Chime Strokers group

Thursday, September 8, 2016

Rockford Stroke Camp, August 2016

August 19-21, 2016 was one of the best camps I've had the privilege of attending. I know, if you've been taking notes you know I said that last year. Well it's true.  It was held again at the Lutheran Outdoors Ministry Camp (LOMC) located near Oregon, Illinois. We've used this camp grounds several times now and it is a terrific place with lots of scenic beauty and wildlife. During morning walks we have spotted deer, turkey, coyote, and many birds. This year was no exception. 

Again this year we had two camps going on the same weekend so we had to pack both the van and the trailer. 

The van went to Estes Park, Colorado and 

the trailer went to the LOMC camp. 


There were many repeat campers this year as in the past. More than half had attended more than one camp this year at this location. There were two camps held this year at LOMC a couple months apart and most of the repeats attended both camps. 

Now tell me, don't you think this bunch looks great just like last years bunch?

We were housed comfortably in three beautiful locations. Here are two of them.

Here's a look at some of the things we do at camp.

                 Nail painting


            Hand waxing


We usually have fishing on our agenda for the weekend also however this year it got rained out.

One camper and volunteer did manage to avoid the rain and got to enjoy the paddle boat.

A volunteer or staff member is always on-site to help the stroke survivor enjoy the moment.

This year we were able to repeat an unusual treat in that we were able to help our stroke survivors and their caregivers enjoy the zip-line that the LOMC camp has on-site. 

I wish you could have seen the excitement of the survivors as they did this. Plenty of assistance was available to help them enjoy this. Survivors who were able to at least stand alone, even without the use of their hands were able to experience this.

We also do crafts, entertain our campers with skits, and always have a special, fun filled Saturday evening program for your enjoyment. And always our signature drum circles.

This year led by Music Therapist Kristin Conrad.

You never know what to expect at our camps because we strive to make them fun, entertaining, educational, comfortable, well fed, and therapeutic. Please come join us some time.