Monday, December 31, 2018

Unsung Heroes

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
Does it seem like I post a lot of articles about caregivers when I should post more about stroke survivors? Maybe I do. At least I don't think so. I think caregivers do not normally get the recognition that they deserve. The focus is usually on the survivor, and rightly so. Bless their hearts. Survivors lives are so radically changed and so misunderstood in their actions. Their lives are so disrupted, made so much more difficult. 

In danger of downplaying the difficulties of the survivor, I want to focus more this week on the difficulties of the caregiver. After all, they are really the unsung heros of a nasty, life changing,  too frequent occurring disability called stroke. 

The following post is a re-post from August 2014 by Deb Theriault. She is a member of the now discontinued Strokenet newsletter staff.
     Unsung Heroes
by Deb Theriault

Back in the 1990’s, I had to do many everyday things for my father, who had developed Parkinson’s disease. I handled all of his paperwork and financial affairs, made sure he went to the doctors and took his medications, was with him whenever he was hospitalized and, ultimately, had to find him a suitable assisted living facility. Once he was there, I then had to communicate with the facility people to make sure that his needs were met.

However, I didn’t consider myself a “real” caregiver since I didn’t have to handle my father’s more physically intimate needs. I remember attending a local Parkinson’s support group with an acquaintance whose father also had Parkinson’s. Unlike my friend, I didn’t have to prepare food for my father or feed him, help him with bathing or assist him with his toileting functions, so when the support group had a “caregiver’s recognition day,” I felt like a fraud when I received one of the white carnations that were handed out to the caregivers in attendance. I knew I was devoting a lot of time and energy looking after my father’s many needs, but I didn’t feel like I was in the same “caregiving league” as my friend.

Likewise, over the years I’ve received a lot of correspondence from spouses, partners and family members of stroke survivors who feel the same way. Many people who are in the survivor’s orbit often say things like:

“I’m not their actual caregiver, but I help them out a lot by reminding them to take their pills, going with them to the doctors, and doing errands and household chores that they can’t do anymore.” 


“I don’t have to give them baths, get them dressed or brush their teeth, but I’ve taken over buying food and meal preparation, because their attention span is off just enough that I fear for their safety going out alone, or when working around a hot stove.” 


“I now do all the finances, bill paying and other administrative chores, as well as keep track of all their appointments and medications, because he/she doesn’t have the concentration or focus that they used to.”

Some people may argue that the above duties actually do describe those of a caregiver. But others would point out that while these activities are a part of the stroke survivor’s total world, they don’t include hands-on activities such as personal hygiene, toileting, and feeding. If they don’t perform these types of duties, many spouses, partners, family members and friends of stroke survivors feel that they’re not “real” caregivers.

But, if these thoughtful, giving people aren’t caregivers, then what are they? Maybe it’s time to think of these individuals in a different light, and to “re-brand” their role as that of a “care partner,” someone who is deeply invested in the well-being of the stroke survivor, but who performs the less physically intimate tasks that keep the survivor’s life in order and enable them to live more normally.

This re-branding won’t be embraced by everyone, but a care partner designation helps to clarify the care partner’s role. It acknowledges that care partners direct and coordinate many aspects of their loved one’s day-to-day activities and care, even if it doesn’t involve feeding, bathing and similar functions. This designation also recognizes that care partnering is just as important as traditional caregiving, and that care partners are just as essential as caregivers, even if their associated tasks are sometimes different.

It should be noted that the caregiver and care partner roles often overlap and aren’t necessarily “static.” They can swing back and forth, as the stroke survivor makes progress but then experiences setbacks. However, as the stroke survivor once again becomes more adept and independent, his/her caregiver can transition back into the role of care partner in the survivor’s life.

Care partnering can also take place at a distance, as in the case of adult children who coordinate the care of parents who live across the country from them. It’s not truly accurate to describe these individuals as caregivers (since they’re not in close physical proximity to the people they’re caring for), but it’s easy to think of them as care partners since they’re still intensely involved in coordinating, and making decisions about, their parents’ daily care.

Most people learn how to be care partners “on the job,” but there’s a lot of information on the internet that can help care partners, and caregivers, to do their jobs better. Much of this info can be found on disease-specific websites, which provide advice to caregivers of people who have those associated illnesses or problems. For example, the Stroke Network has a wonderful caregiver’s forum for people who take care of stroke survivors.

But, there’s at least one resource out there that isn’t associated with any one illness or condition. The “Care Partners Resource” has a good website that addresses both caregiving and care partnering. They can be found at:

Additional resources can be found by “Googling” words and phrases such as “care partner”, “care partnering”, “caregiving”, and like terms.
Copyright @August 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, December 23, 2018


United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box


December 25th we celebrate the birth of Christ 
It is a day of peace 
It's also the day we look for gifts that 
St. Nicholas (aka Santa Claus)
has left under our Christmas tree
Mom and Dad 
Daughters and Sons
Granddaughters and Grandsons
Sisters and Brothers 
Grandmas and Grandpas 
Aunts and Uncles 
Nieces and Nephews
Sometimes People We Don't Even Know
Leave Presents There Too
But the Best Present of All is Christ Himself.

‘Twas the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse;
The stockings were hung by the chimney with care,
In hopes that St. Nicholas soon would be there;

The children were nestled all snug in their beds,
While visions of sugar-plums danced in their heads;
And mamma in her ‘kerchief, and I in my cap,
Had just settled down for a long winter’s nap,

When out on the lawn there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to the window I flew like a flash,
Tore open the shutters and threw up the sash.

The moon on the breast of the new-fallen snow
Gave the lustre of mid-day to objects below,
When, what to my wondering eyes should appear,
But a miniature sleigh, and eight tiny reindeer,

With a little old driver, so lively and quick,
I knew in a moment it must be St. Nick.
More rapid than eagles his coursers they came,
And he whistled, and shouted, and called them by name;

“Now, Dasher! now, Dancer! now, Prancer and Vixen!
On, Comet! on Cupid! on, Donder and Blitzen!
To the top of the porch! to the top of the wall!
Now dash away! dash away! dash away all!”

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky,
So up to the house-top the coursers they flew,
With the sleigh full of toys, and St. Nicholas too.

And then, in a twinkling, I heard on the roof
The prancing and pawing of each little hoof.
As I drew in my hand, and was turning around,
Down the chimney St. Nicholas came with a bound.

He was dressed all in fur, from his head to his foot,
And his clothes were all tarnished with ashes and soot;
A bundle of toys he had flung on his back,
And he looked like a peddler just opening his pack.

His eyes—how they twinkled! his dimples how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the beard of his chin was as white as the snow;

The stump of a pipe he held tight in his teeth,
And the smoke it encircled his head like a wreath;
He had a broad face and a little round belly,
That shook, when he laughed like a bowlful of jelly.

He was chubby and plump, a right jolly old elf,
And I laughed when I saw him, in spite of myself;
A wink of his eye and a twist of his head,
Soon gave me to know I had nothing to dread;

He spoke not a word, but went straight to his work,
And filled all the stockings; then turned with a jerk,
And laying his finger aside of his nose,
And giving a nod, up the chimney he rose;

He sprang to his sleigh, to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, ere he drove out of sight,
“Happy Christmas to all, and to all a good-night.”

Sunday, December 16, 2018

True Wealth Is Found in One’s Friends

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
Pastor Phil Bell is a stroke survivor and one of our stroke camp friends from Macomb, Illinois. Occasionally, he writes articles for their local newspaper. This is one of them, and he has permitted us to post it on our blog.
Street & Steeple for December 7, 2018

“True Wealth Is Found in One’s Friends”
By Phil Bell, retired pastor University Baptist Church

Annually, Forbes Magazine publishes lists of the world’s most wealthy people. They measure wealth, as do most of us, by money and possessions. There are, however, other ways to measure riches, among them, knowledge and education. I would propose that true wealth is measured by one’s friends! On my refrigerator is a magnet reading, “Friends are God’s way of taking care of us.” I couldn’t agree more!

Following my massive stroke, when my wife, Nancy, brought me home from Heartland Healthcare, a few of my church friends who are also brothers and sisters in Christ, came to our house to assist her in transferring me from my wheelchair to our stairs lift chair, back into the wheelchair, and then into bed. In fact, one of them came every Sunday morning to help her so I could attend church and continued to do so until she felt confident to do it herself! Nearly all of the church folk brought us dinner every day until we had to, literally, tell them to stop. Without these friends my transition home would have been significantly more difficult, if not impossible!

Throughout my life I have been blessed to have eight best friends, including my wife, both when we were dating and after our marriage. I honestly believe her attending me so well as my sole caregiver is due as much as or more to her being my best friend as to her being my wife. My two best friends now after my wife are both pastors: my own, Rich Barnett of University Baptist and Mike Burdick of Immanuel Lutheran.

The first Aprils Fools Day following my stroke I called Mike to say, “Mike, now that I have half a brain I’m ready to convert to be a Lutheran. Not even waiting for me to say April Fool, he said, “Phil, we don’t want you!” That is, I believe, how friends speak to one another, honestly with fun out of mutual respect and trust! Nancy and I are fortunate to have good neighbors and friends on either side of us.

Also, across the street, live a family of Cardinals fans and friends, if you can believe that! Nancy, when she brought me home, arranged with them that she could call upon them to help, if needed. They, graciously told her especially to call in cases of emergency. Sure enough, soon, I ended up on the floor. She called them. When they came, Nancy looked down at me to say, “You’re never going to live this down.” As most of you know, I am one of Macomb’s most die-hard and obnoxious Cubs fan! I looked up to see three Cardinals shirted persons here to rescue me! They did, and since, many times Tom has been invaluable help to Nancy in many ways!

In 2016 when the Cubs won it all. Tom came to me saying, “Phil, you know your Cubs flag hanging in front of your house is getting a little the worse for wear. I will buy you a new one should the Cubs win the World Series.” Of course, they did and he did! He came up with it so quickly I wondered if he really had to buy it or already had it, being a closet Cubs fan! Either way, that is the height of friendship, a Cardinals fan giving a Cubs flag to a Cubs fan. He is paying the price for his magnanimous gesture, having to look at it every day!

The Bible has plenty to say about friends. In Proverbs we are told that there is a friend who is closer than a brother, that a friend’s counsel is sweet, and we are not to forsake our own friend or the friend of our father. I trust I’ve convinced you that true wealth is measured by our friends!

Your job is to appreciate your friends by telling them so and increase others’ riches by being a friend yourself!

Sunday, December 9, 2018

Defeating Isolation

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
The following post is about a support group in Southern California. I'm reposting it here because I believe isolation to be a major factor after a stroke. Many time I've heard at camp of survivors not seeing friends anymore or relatives not coming to visit as much anymore. Support groups are a very good way to address these isolation feelings. It can be a good way to make new friends, socialize, educate and encourage rehab. Use this Stroke Support Group Finder Link to help you find a support group in your area. You merely enter your zip code and give a radius in miles you're willing to drive to attend.

Peoria, Illinois has a support group. Here is their web address:

The following article is from the Stroke Connection website:

Defeating Isolation for 

Over 40 Years

Our Support Showcase department highlights the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!

Glendora Program Director Sonia Schupbach
In the 1970s, Dr. Herbert Johnson of Casa Colina Rehabilitation Center in southern California knew that stroke could be incredibly isolating for both survivors and their families. He believed that isolation affected a survivor’s emotional wellbeing as well as their physical recovery. In an effort to prevent social isolation and regression, Johnson teamed up with colleague Sharon Meyers to create the Glendora After Stroke Support Group in 1973. Their plan was to create a venue where both survivors and their caregivers could partake in camaraderie with others who were going through similar life experiences. The fact they did that in the last century makes theirs one of the oldest support groups we know about.
The Glendora After Stroke Center is a no-fee program that serves the greater Los Angeles area.Glendora is a town of 50,000 about 25 miles east of Los Angeles. The current director, SoniaSchupbach, has been leading the group since 2012. She has worked with seniors for over 20 years. “I love being around these people,” she said. “They have a real zest for life.”
The group meets every Wednesday at the La Fetra Senior Center, a city-owned facility. A full day of programs starts at 9:30 in concurrent break-out groups. One group, led by assistant director Pat Kelly, focuses on relearning skills such as reading, writing and speaking. Simultaneously, a caregiver support group and a current events discussion group take place. At 11 a.m., everyone re-groups for chair exercises followed by entertainment or an educational speaker. After a low-cost lunch, the survivors convene for a support group meeting.
Field trips are planned once a quarter. Recent excursions have been to visit the space shuttle Endeavour, the LaBrea tar pits, the San Juan Capistrano Mission and the Ronald Reagan Presidential Library & Museum.
In addition to these activities, a volunteer recognition banquet is held every October. “We have many, many volunteers to honor,” Schupbach said. “Even the mayor attends.” The group also celebrates Halloween with a costume contest and holds an annual Christmas party.
Being a clearinghouse of resources is another way the group supports its members. “We try to get people what they need,” Schupbach said. “For instance, when people have to take early retirement, we have a volunteer lawyer who helps them through the process at Social Security.”


It takes a budget to put on a no-fee program of this magnitude every week, as well as schedule speakers, entertainment and field trips. The Glendora group gets a portion of its budget (and the use of the La Fetra Senior Center) as a grant from the city. In addition, the group marks Stroke Awareness Month in May by mailing donation requests from members to family and friends. They also raise money by collecting garage sale items that they give to a local resale shop, which in turn gives the group a 30 percent commission.

Attracting Members

Although many members have been coming for years, no group can last 40 years without bringing in new members, so publicity is key. For starters, the group maintains a listing in the local weekly paper. Each May, a banner promoting Stroke Awareness Month and with the group’s contact information is hung on Glendora’s main street. There is also a banner inside the senior center that alerts visitors to the weekly meetings. Brochures are placed in local rehab centers and doctors’ offices. The group also maintains a community presence by participating in health fairs and a Halloween carnival. And after so many years, there is significant word-of-mouth publicity.


Schupbach attributes the success and longevity of the Glendora After-Stroke Program to attitude. “Our members love to come because they get encouragement and don’t feel different,” Schupbach said. “Our goal is to love them and accept them. I give lots of hugs and get lots of hugs back.”
Love and acceptance are a good way to trump isolation. No doubt founder Johnson would approve.

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.
United Stroke Alliance is not an affiliation of American Heart Association/American Stroke 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 
American Heart Association. See full terms of use.

Sunday, December 2, 2018

The two hours that saved me from myself

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
Monica is a frequent and valuable volunteer for our stroke camps and for other brain injury organizations she is involved with. Her words are worth considering as I believe stroke survivors and even their caregivers can, and in many cases do, experience depression when their loved one suffers a stroke. Monica is also an excellent, and should be considered professional, photographer. (She makes my photos look like they came off the walls of prehistoric caves)

She posted this on Thanksgiving day and I was able to get her permission to repost it here on our RRSC blog. I believe this to be good reading even now because even though major holiday seasons like Thanksgiving, Christmas and the coming New Year celebrations should be happy times they are also prime depression times for many of us for many reasons.

If you wish to see more of Monica's thoughts and experiences I urge you to visit her blog site:

  "Turning Empathy Into Action" 

The two hours that saved me from myself

By Monica Vest Wheeler

May you be blessed with discovering new ways of giving thanks on this day …

I am beyond blessed with the family and friends who never fail to lend a hand, a shoulder, a word, an ear … They put me in a place of calm, such as this moment of soaking in the power and peace of Lake Michigan last month on my way home from camp …

I now take better care of my physical self … walking at least four to five times a week, eating less and better … developing more stamina after losing more than 20 pounds … a great reversal after ending up in the ER near physical collapse two weeks after Mom passed away in July.

Yes, yes, yes, go, go, go …

Self-talk, self-talk, self-talk …

Yes, I believed that I was (re)building a new me …

Several days ago, I finally stopped to ask, “Who am I?" If I only knew. I had been writing the story for 60 years and finding fault with every previous chapter. There wasn’t enough red ink in the world to correct everything “I" considered an error. Intellectually I knew I was wrong but I couldn't course-correct emotionally … Don't worry. No cliff jumping because I'm afraid of heights … :-)

My poor husband and son, the challenges they've faced with someone who has battled depression for soooooo many years … Talk about loving, patient souls … Yes, I wanted/needed help but was unsure what it even was. I had already increased my meds while caring for Mom or I knew I wouldn’t make it. However, I’m smart enough to know that meds alone wouldn’t “rescue” me.

I composed an email asking a professional counselor I knew for help. Then I steadied my shaking finger over the send button … and hit it. This person got me in for what turned out to be a two-hour Monica-athon. Poor person … I owe them a box of tissues to replace the one I consumed … :-)

Finally, finally, finally … I untangled the roots of decades of self-imposed inadequacies, doubts and fears, and it made sense. In the last 17 years, I had had therapy several times because of my depression and made great progress. But this time, because of where I am in my lifeline and losing my parents in the last two years, I guess I tapped into a deeper vein of existence and purpose … oh yes …

And it was enough to cut my tissue consumption at home by 90 percent and to turn my husband’s tears of worry a few days ago to laughing, “Geez, you’re sure happy!” just yesterday …

Blessed be those who help and listen and love and hurt for us … family and friends who are kind and patient and compassionate … people who acknowledge they need help and ask for and accept it …

I need you … and you need me … what a glorious, glorious place to be …

Wednesday, November 21, 2018

Happy Thanksgiving from Care Partners Resource

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box
I know this post is earlier than previous ones but I just got this wonderful email tonight from Lori Ramos Lemasters of Carepartners Resource. I want to pass it on to you before you gather with your family and/or friends tomorrow for Thanksgiving because I think it is very good advice for you survivors or caregivers. How many times have you heard: "If there is anything I can do to help, let me know." With her advice, you have a good chance of getting that help. 
---------------------------------------------------------------------------------------------------Happy Thanksgiving from Care Partners Resource

Care Partners Resource

Happy Thanksgiving to you and yours,

As you prepare for your Thanksgiving celebration I wanted to send a quick email to wish you blessings and happiness.
While you may be looking forward to the time with family and friends, holidays can also be difficult when your caring for a loved one. The added responsibilities of house guests, extra cooking or even getting your loved one to a family celebration can be a challenge. However, it is worth the time and extra energy to break out of the everyday routine and enjoy family, friends and food.
This Thanksgiving holiday I encourage each of you to take this opportunity to ask for a little help. It may seem like an odd time to discuss your needs but family gatherings are a great time to explain how things have changed, how you're feeling and that you would be grateful for a little help. Before you head out to that celebration or everyone shows up at your door take a minute and write everything you do in a day. Make copies and keep it handy and be prepared the moment anyone offers any help hand it to them and ask them to pick one item on the list.
If you have a tough time asking for or accepting help please watch this quick 10 minute Caregiver Tuesday Talk Outside the Box from my YouTube page:

I hope the tips in the video are helpful and if you need any other ideas or suggestions I'm only an email away.

Take good care and have a very happy Thanksgiving,

Copyright © 2018 Care Partners Resource, All rights reserved.
Just a reminder - you requested to join our news update list from our website at We are happy to keep you informed and thank you for your interest.

Our mailing address is:
Care Partners Resource
Littleton, CO 80127

Sunday, November 18, 2018

Warning Stroke, But Didn’t Seek Help

United Stroke Alliance in partnership with Medtronic launched a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

Show Me The Booster Box

Survey: 1 in 3 adults may have had 
warning stroke, 
but most didn’t seek help
By American Heart Association News

A third of U.S. adults have had symptoms consistent with a mini-stroke, but nearly no one – only 3 percent – called 911 for help, a survey released Monday shows.

The responses from 2,040 adults in a representative sample showed 35 percent had experienced at least one sign of a mini-stroke, called a transient ischemic attack or TIA. Those who did were more likely to wait, rest or take medicine than to call 911, according to the online survey funded by the American Heart Association/American Stroke Association.

“Ignoring any stroke sign could be a deadly mistake,” ASA Chairman Mitch Elkind, M.D., said in a news release. “Only a formal medical diagnosis with brain imaging can determine whether you’re having a TIA or a stroke.”

It’s a warning that hits all too close to home for Stacy Quinn. She was 41 and in the best shape of her life in December 2014 when she got a horrible headache that wouldn’t go away.

“I was working a lot, and it was around the holidays. So, I blew it off,” said Quinn, who at the time worked in a high-stress communications job at an asset management firm in New York. “Then, I was in a meeting with my boss, and I slurred my speech. I thought, ‘It must be the headache.’”

That evening, she sought help at an urgent care facility, where she was told she was probably having a migraine. At another visit later, she was told it was an earache.

Finally, after 12 days of what she describes as the worst headache of her life, she went to a neurologist who ordered scans – including a magnetic resonance angiogram, or MRA, which provides pictures of blood vessels.

It probably saved her life. Hours later, the doctor called to tell her the emergency room staff at New York-Presbyterian Hospital were awaiting her arrival. She was in danger of having a stroke.

The headaches were caused by a spontaneous carotid artery dissection on the left side of her neck that was blocking 90 percent of the blood flow to her brain. Elkind said anyone with a stroke warning sign that appears suddenly, whether it disappears or not, should call 911 immediately to improve chances of an accurate diagnosis, treatment and recovery.

“Officially, about five million Americans, or 2.3 percent, have had a self-reported, physician-diagnosed TIA, but as this survey suggests, we suspect the true prevalence is higher because many people who experience symptoms consistent with a TIA fail to report it,” he said.

If a diagnosis shows a clot is blocking blood flow to the brain – known as an ischemic stroke, the most common type – the patient may be eligible for a clot-busting drug. In some cases, a medical device called a stent retriever is also used to remove the clot, helping to reduce long-term disability.

After a stroke or TIA, the patient must fully understand their risk factors and work with their doctor on a tailored secondary prevention plan, according to the ASA. This plan may include lifestyle changes, medications to manage known risk factors and the addition of an antiplatelet drug such as aspirin.

The online survey was conducted March 20-26 as part of the ASA’s Together to End Stroke campaign. Among the 35 percent who said they had experienced at least one TIA symptom lasting a few minutes or up to 24 hours:
20 percent had a sudden and unexplained severe headache with no known cause.
14 percent had sudden and unexplained trouble walking, dizziness, loss of balance or coordination.
10 percent had sudden and unexplained numbness or weakness of the face, arm or leg, especially on one side of the body.
10 percent had sudden and unexplained trouble seeing in one or both eyes. --5 percent had sudden and unexplained confusion, trouble speaking or understanding.

Yet, the survey showed only 3 percent of respondents called 911 in response to TIA symptoms. Three out of four respondents didn’t know what a transient ischemic attack was.

Quinn is working to change that. She is hoping to spread her message about stroke warning signs far and wide. “I want to use my experience to help people,” she said. “In my mind, I had images of stroke affecting older people and typically of men, not a woman. That was my big mistake.”

Stacy Quinn was diagnosed with a mini-stroke at 41.
Stacy Quinn was diagnosed with a mini-stroke at 41. (Photo courtesy of Erin Boyle)

To easily remember the most common stroke signs, the ASA recommends learning the F.A.S.T. acronym: Face drooping; Arm weakness; Speech difficulty; Time to call 911.

But there are other stroke signs to be on alert for, too, such as sudden confusion, trouble speaking or understanding; sudden numbness or weakness of the face, arm or leg, especially on one side of the body; sudden trouble seeing in one or both eyes; sudden trouble walking; dizziness, loss of balance or coordination; or – as was the case with Quinn – a sudden, severe headache with no known cause.

Quinn was lucky many times over. Doctors were able to treat her with medicine. She now lives with approximately 35 percent blockage.

“I can’t do things that could put pressure on my neck like go on roller coasters or lift heavy things over my head. I have to watch my stress,” said Quinn, who is 43 and still works in communications, but for a healthcare company in New Jersey.

“I had an angel on my shoulder that I didn’t have a full-blown stroke that created long-term health issues or took my life.”
The following is from United Stroke Alliance, the parent organization for Retreat & Refresh Stroke Camp.

80% of strokes could be avoided. 
Every 4 minutes someone dies from a stroke.
There are life saving methods to minimize the effects of stroke - IF YOU GET TREATMENT IN TIME.

The simple F.A.S.T. test mentioned above (Face, Arms, Speech, Time) by AHA/ASA is still valid, however, we have been noticing that, while people are getting better recognizing the F.A.S. part, there is a reluctance to take the T. part seriously. 

Here is a better guideline we think should be promoted:


B - Balance: Sudden loss of balance.
E - Eyes: Sudden blurry or loss of vision.

F - Face: Sudden numbness, one side drooping - can they smile.
A - Arms: Sudden weakness in arms - can you raise both?
S - Speech: Slurred or mumbling speech.
T - Time: Call 911 NOW
E - Emergency
R - Room: Get to the ER by ambulance, they know what to                       do FASTER

While helping survivors at our stroke camps I found that some of them, sufferers themselves or their caregivers, have driven their own cars to the ER because it seemed faster than waiting for an ambulance to arrive. This is not a good idea because many things can happen on the way such as long stop lights, mechanical breakdown, accident, flat tire, or a traffic jam which could mean life or death or serious debilitation to the sufferer. 

It is estimated that in each minute of a ischemic stroke, 1.9 million neurons, 14 billion synapses, and 12 km of myelinated fibers are destroyed. 

You may think you can get there faster than waiting for an ambulance but the truth is the sufferer will be getting diagnosis and treatment on the way to the ER in the ambulance, and the ER will be getting the stroke team ready and waiting at the door, with a good diagnosis and proper tests in mind. Some ambulances in some cities are even able to administer the clot busting drug TPA on the way to the ER. My hope is that all cities will have this capability, and soon.

Time is extremely important
when treating stroke. 
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Sunday, November 11, 2018

Understanding Common Post-Stroke Medications

United Stroke Alliance in partnership with Medtronic is launching a new resource for Stroke Support Groups called The Booster Box. Included in the box is everything a leader needs to conduct a support group meeting for up to 24 attendees.

To receive your free Booster Box please call our office at 
309-688-5450 or email to request yours. 

Subscriptions will be available for purchase and information will be inside your free box.  

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Understanding Common Post-Stroke Medications

Most stroke survivors leave the hospital or rehab with at least one, sometimes several, medications they may not have been taking before. This may be quite a surprise for some patients — especially if stroke isn’t the only new diagnosis they received. “If the stroke is the result of undiagnosed diabetes or high blood pressure, they may not have been on any medications before, and they may leave the hospital with multiple prescriptions,” said physiatrist Lynn Vidakovic of the Shirley Ryan AbilityLab in Chicago.

Following the healthcare team’s recommendations and taking medicines as prescribed is key to keeping your risk of another stroke or heart attack as low as possible. It may take some getting used to, especially if you haven’t been on medication before. Never quit taking a prescribed medicine without talking with your healthcare provider first. There are many ways they can work with you if you’re having any kinds of difficulties with any of your medicines.

Understanding the purpose, potential side effects and risks of not taking your medicines as directed is important, whether they’re prescribed or over the counter. Let’s look at some of the most common medication therapies recommended following an ischemic stroke.

“Blood Thinners” aka Antiplatelets & Anticoagulants

Roughly 87 percent of strokes are due to some sort of blocked artery, and as a result, survivors will often need an antiplatelet or anticoagulant.

When we get a cut or scrape that bleeds, the platelets in our blood release a chemical that signals other platelets to come and form a blood clot, closing the wound with a scab. Antiplatelets work to limit the release of that chemical signal, preventing platelets from coming together and clotting as easily. This is why antiplatelets such as aspirin, clopidogrel, dipyridamole and ticlopidine, allow blood to flow more easily.

Depending on the patient and what caused their ischemic stroke, aspirin or other antiplatelets may be recommended on their own or in combination to help prevent clots from forming in the blood vessels and causing another stroke. Your healthcare provider determines the right dose and combination of medicines for you based on several considerations, including your risk factors profile.

While antiplatelet therapy has many potential benefits, it is not right for everyone. For example, people with a history of liver or kidney disease, gastrointestinal disease or peptic ulcers, high blood pressure, bleeding disorders or asthma may not be able to take aspirin or may require special doses.

When a stroke is cardioembolic (caused by a clot formed in the heart that then travels to the brain) due to atrial fibrillation — a condition that increases the risk of stroke five-fold –, heart valve or other problems, it’s likely an anticoagulant will be prescribed. Anticoagulants do not dissolve clots but may prevent existing clots from getting bigger and causing more serious problems, such as a second stroke.

Older anticoagulant drugs are heparin and warfarin. These older anticoagulants interfere with the production of clotting factors made in the liver. That means they must be monitored regularly through blood tests for their impact on the liver. The goal is to make blood clot less, not to prevent clotting completely.

Physiatrist Lynn Vidakovic
Warfarin also requires regular blood tests to ensure the correct dose. Too little increases the risk of stroke and heart attack, but too much puts someone at risk for bleeding. Generic brands may be a different strength than the one prescribed by your doctor. Speak to your doctor first if you are considering using a generic if not prescribed initially to make sure the drugs are equivalent.

Also, warfarin users must be careful with their diet and avoid Vitamin K, which is found in cabbage, cauliflower, spinach and other leafy green vegetables. Warfarin slows clot formation by competing with Vitamin K, so having too much of it makes the medicine less effective.

Newer FDA-approved anticoagulants — sometimes referred to as novel oral anticoagulants (NOACs) or direct-acting oral anticoagulants (DOACs) — are rivaroxaban, apixaban, edoxaban and dabigatran. The newer anticoagulants are simpler to use because they don’t require frequent blood tests and some of them have a lower risk of major bleeding as well.

Occasionally some survivors may be told to combine antiplatelet and anticoagulant therapy, depending on their health profile and risk factors. But this is unusual and, if you are on both, you should ask your healthcare provider why. All strokes and survivors are unique, so secondary prevention must be tailored to each survivor.


Many ischemic strokes are due to the narrowing of blood vessels to, or in, the brain brought on by plaque buildup. This buildup is known as atherosclerosis (“hardening of the arteries”) and high levels of cholesterol in the blood may contribute to its development.

Statins work in the liver to keep cholesterol from forming. Several medications lower cholesterol levels, but statins are recommended for most patients because they’re also known to significantly reduce the risk of a heart attack or stroke. “There are other benefits of taking them beyond lowering the cholesterol. For instance, they can also be anti inflammatory,” Vidakovic said.

Another advantage to statins is that they are well tolerated, with few side effects. “It’s important to check your liver function and, in a very small percentage of people, they can cause myopathy, but the benefit of reducing your risk of stroke by lowering your cholesterol, specifically your LDL, is large,” she said.

Your doctor may consider other medications, too, especially if statins cause serious side effects or they don’t help you enough.

Depression medications

Depression has been reported in as many as 33 percent of stroke survivors, but we currently don’t have reliable estimates for how often depression happens with stroke. What we do know is that when stroke survivors experience depression, it can be an obstacle to their participation in their own recovery.

“There are neurochemical changes that can happen after stroke that cause depression,” Vidakovic said. “Some patients are going to have depression and if we treat that depression, those patients have a better functional outcome.”

One study of fluoxetine, a selective serotonin reuptake inhibitor (SSRI) for depression, demonstrated that it was also helpful for motor recovery. There have been several small studies of SSRIs that suggest this benefit, but larger, well-controlled trials are needed to confirm the validity of the findings. When Vidakovic prescribes it for motor recovery, it is typically no longer than 90 days.

Blood pressure medications

High blood pressure (HBP) is a risk factor for recurrent stroke and other cardiovascular conditions. There are many types of HBP medicines that work in different ways to reduce BP. It may take more than one and several dosage adjustments before blood pressure is under control.

“Since we typically don’t feel our blood pressure, it’s very important to monitor your blood pressure at home,” Vidakovic said. “And take your blood pressure medications consistently. It’s important for patients to talk to their doctor about getting a blood pressure regimen that they can do every day. Sometimes blood pressure is controlled with just one medication; sometimes they may need two, three or even four.”

Vidakovic suggests using brushing your teeth as the cue for taking HBP or diabetes medication, and she reminds us that every increase in blood pressure increases the risk for recurrent stroke significantly.

Following the Plan

It is very important to take your prescriptions as directed. These medications are prescribed in the doses and at the times they are because the science has shown them to work best when taken that way. Any deviation from these instructions should always be discussed with your healthcare provider. Don’t assume that “taking more” will increase the effect or “taking less” will give you the same result with fewer side effects. Never stop a long-term medication unless advised to do so by your healthcare professional.

Many side effects can be minimized by taking the drug at a certain time of day, e.g. blood pressure meds taken at bedtime, or to take advantage of the body’s circadian rhythm. Many drugs also can be absorbed differently if taken on an empty stomach or with food. Taking medications as directed is important, and changing how they are taken should never be done without consulting your doctor or pharmacist. Learn more about some of the side effects of common post-stroke medicines on the Stroke Connection website.

Even with full understanding of the purpose and benefits of post-stroke medications, many survivors experience challenges taking their medicine as directed. Let’s explore some of the main barriers people deal with, along with tips for overcoming them.

External Barriers

It’s too complicated!

Stroke survivors often have to take multiple medications, particularly if they have other conditions such as atherosclerosis, high blood pressure or diabetes, which may have contributed to the stroke. The more complicated the drug or lifestyle prescription, the easier it is to miss doses, miss refills or just simply be overwhelmed.

Solutions: Create a medication map. A medication map is a schedule covering the whole day that plots when you take what medicine, the dose and any other instructions, such as whether or not to take with food. It organizes all your medication in one place so you see at a glance what, when and how much.

Schedule a “brown bag” session with your doctor or pharmacist. Put all your prescription and nonprescription medications in a bag and take them to your doctor’s office or pharmacy. They may find overlapping or duplicate prescriptions from different doctors. This would also be a good time to make a medication map. Periodic medication reviews allow you to ask if simpler, less expensive or otherwise better alternatives are available.
Medications are prescribed in the doses and at the times they are because the science has shown them to work best when taken that way

It costs too much!

Prescriptions can be expensive, and even patients with good insurance may find that their out-of-pocket costs are more than they can afford. Patients on fixed incomes may think they have to choose between their prescriptions and other necessities. In an effort to stretch their medicine, they may reduce the amount they take or the frequency, hoping it will still be effective. But a medicine not taken as directed can’t work as expected.

Solutions: If you’re having challenges affording your prescriptions, speak to your healthcare team about it, they may be able to help find medications that are affordable and within your health plan. You may also want to see Managing Prescription Costs for ways to save money.

Internal Barriers

I don’t really need this.

For many people, taking a prescription reminds them that they are sick, and they prefer not to be reminded. Or they may not feel better or even feel worse taking blood pressure medication, so they figure ‘why bother?’

Solutions: Following a stroke, survivors often find a “new normal” - and medicines are often a part of that. It may be difficult to accept and adjust at first but keep in mind that the medicines and lifestyle recommendations from the doctor are designed to keep the risk of another life-threatening event at bay.

Talking with a professional counselor may also help with moving beyond feelings of denial. Enlisting the support of family and friends to help keep on track with meds and to encourage and participate in healthy behaviors, like eating right and making time for physical activity, can be helpful for all involved.

I have a hard time remembering.

Survivors with high blood pressure or diabetes must monitor those conditions closely. If they’re also experiencing dementia or memory loss, it can interfere with their ability to keep track of these conditions.

Solutions: Thought process challenges may be difficult to compensate for. Medication maps (see above) and simplified drug regimens are helpful. Family support is important, but professional caregiving services may be necessary in dealing with this barrier. Caregiver creativity can help. For instance, they may mask the medication by putting it in food or drink. For patients who do well with a smartphone or tablet device, there are also apps that can alert a patient at the right time with the name of the medicine and instructions for using it.

I don’t know why I need this.

Some survivors don’t understand the underlying condition that may have caused the stroke and aren’t ready for the amount and complexity of information that comes with their diagnosis. That information is often given at hospital discharge, a time when patients may find it hard to focus on what is being said.

Solutions: Ask someone on your healthcare team, whether it’s your doctor, nurse practitioner or a clinical nurse specialist about anything and everything that you’re not sure you understand. Ask if they have any printed material for patients that explains your condition(s) or a list of credible, layperson friendly websites you can visit. The American Stroke Association’s website is a great place to start. If you have more questions after exploring print materials or the internet, write them down and discuss them with your healthcare provider. If you are unsure about medication, ask questions of your nurse, doctor or pharmacist.

I just can’t get this into my routine.

It seems like taking a few pills every day would be easy to do, but sometimes things that should be easy simply aren’t, especially if there are no immediate repercussions for not taking medicine, eating the wrong foods, or not exercising. At first your medication may be the highest priority, but as you get further from the event, other priorities pop up and demand attention. A prescription bottle gets pushed behind something else, and without a symptom to signal that something is wrong, might be forgotten for days or weeks.

Solutions: You can’t make something a habit until you’ve made it a priority, so make taking your medicine as important as brushing your teeth. Most people don’t wait until someone tells them they have bad breath before using a toothbrush. Don’t wait for your body to tell you that you need to take your medication.

Making a written commitment can help. If yours is a complicated treatment plan, ask your doctor, nurse practitioner or a clinical nurse specialist if it can be simplified. Use a weekly pill box where a week’s worth of pills can be allotted. Cue pill taking with some other activity, like eating. Set an alarm or find a smartphone app that lets you schedule automatic reminders. Ask your family to help you remember.

I don’t like putting foreign substances into my body.

Some people fear being defined by their condition, and taking medicine reminds them of it. Others are simply afraid to put foreign substances into their bodies, fearing there will be unknown consequences or that they will become addicted.

Solutions: Many fears are unfounded. Talk with your healthcare provider about any fears or concerns; they may have information that will put you at ease. If you experience side effects, report them and talk with the doctor about other possible ways of taking the medicine (with food? change frequency or dosage?).

For more information on things you can do to prevent another stroke, visit