Don't Make Me Over

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

www.unitedstrokealliance.org

The following was first posted on the American Stroke Association's StrokeConnection website: 

http://strokeconnection.strokeassociation.org

BY JOHN KAWIE

There are a few problems I have with the world at large. For instance, people kicking the back of my chair. Public nail clipping. Never-ending car alarms. And our upstairs neighbor doing his impression of LeBron practicing jump shots. But today I’d like to vent about one that’s currently stuck in my craw: the unsolicited advice, opinions and comments strangers offer about my disability.

These folks are well-meaning, but they have the stroke rehab knowledge of a cantaloupe. Like my aide, Norma, who claimed her conch soup was a miracle elixir that could raise the dead. I didn’t know what conch was — thought it might be edible Jamaican hooch — so I was all in (doesn’t taste like chicken). Or her friend Monica, who swore that putting nutmeg under my tongue (the actual nut, not ground) would magically return the use of my affected left arm. Well it didn’t, but I did manage to do a better Daffy Duck than Mel Blanc.

I was a newbie stroke survivor, desperate, straight out of the hospital. You name it, I tried it. Now? I’m street savvy. No more magic potions for me. Yet, the advice keeps coming.

Take last week. While Marilyn was finishing her workout at the NY Health Club, I was killing time in the lobby. Suddenly a swarm of fitness instructors poured in. I found myself surrounded like Custer at Little Bighorn, but instead of the Sioux nation I was under attack by a war party of “Baywatch” clones. They fired everything at me: tai chi, Pilates, water-aerobics, kale-filled smoothies and, of course, “The Rock” wanted me to pump iron. Just what I need… half my body looking like Popeye and the other half like Olive Oil.

I reassured the throng of underwear models that I was fine while Marilyn pushed me through the door. We made it to the street only to be confronted by Joe, the neighborhood homeless guy, who yelled, “Hey buddy, your left side ain’t lookin’ too good.” Perfect! He wants money from everybody else, but lucky me — I get opinions.

Two blocks later we reached our building’s elevator and shared it with an elderly woman visiting a neighbor on 16. She gave me the once over, and I knew what was coming.

“Dear, I used to be a therapist ... if you worked hard … made a serious effort … you’d get your arm back … hope you don’t mind my suggestions.” Mind? Of course, I don’t mind being singled out and having to reassure yet another stranger that I’m perfectly fine — ecstatic even.
 

OK, I’m the crooked painting on the wall that people can’t walk by without straightening. I’ve learned to accept that. I’ve also learned to keep a set of stock answers at my disposal for all disability queries. “I leave my left side like this because _____”:
I dance in a unique Chippendales unit catering to disabled bachelorette parties. Think Special Olympics with a bow tie and a thong.
I play Strokeman, a super hero in an Off-Broadway production. Think Special Olympics with a leotard and cape.
I’m a model for a disabled pin-up calendar (I know, it’s a stretch). Think cheesy Special Olympics.

It seems everyone wants me to go back to what I was. While I’m sure their intentions are good, I don’t want to go back. I need to move forward with who I am now. And, by the way, I’m fine. Really

DVDs of John’s award-winning one-man show, Brain Freeze, are available at Amazon.com. For booking information, contact John at jkawie@aol.com.

This information is provided as a resource to StrokeConnection readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the 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 the American Heart Association News. See full terms of use.

Holiday ‘new normal’ After a Stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

www.unitedstrokealliance.org

By AMERICAN HEART ASSOCIATION NEWS
https://news.heart.org/

On the first Christmas after she suffered a major stroke, Chris Richards was determined to craft her traditional family celebration at their home in Laramie, Wyoming, rising at 5 a.m. for a day of baking, cooking and wrapping presents.

“I was trying to prove I could still do it all myself,” Chris said.



“Everyone was trying to help, but pretty soon she was shooing everybody out of the kitchen,” said Loren, her husband. “We weren’t doing it the way she would be doing it.”

That night Chris wound up in the emergency room, exhausted, suffering chest pain and fearful she was having a heart attack.

She wasn’t, but the Richards family learned a lesson that everyone with cardiac or stroke issues should heed during the holidays: “You can still have your traditions, but things are going to change,” said her daughter, Brittany Board. “There’s going to be a new normal.”

That’s the message that Melissa Carry, M.D., emphasizes this time of year. Carry, a cardiologist at the Baylor Jack and Jane Hamilton Heart and Vascular Hospital in Dallas, said many of her patients have already made lifestyle changes to protect their health, but need a reminder when the holidays come around.

“I tell them when you start thinking about what you’re going to do for the holidays, it’s not about being perfect,” she said. “You have to try to tone it down.”

That means limiting stress by not overbooking too many holiday events, Carry said. It means not comparing yourself to Martha Stewart when you prepare your holiday home. And perhaps most of all, it means thinking twice, and maybe a third time, at the dinner table and the bar.

Disregarding the advice invites many health consequences.

Carry said the body responds to stress by producing adrenaline, a hormone that increases strength and awareness to help deal with a crisis. But too much adrenaline over an extended period causes problems ranging from anxiety to headaches to heart disease.

“As adrenaline levels go up, blood pressure goes up,” she said. “Then you add a bunch of fatty food on top of it and your arteries become unstable. You can have a heart attack. This is our busiest time of the year because people don’t handle the stress of the holidays well.”

Alcohol, meanwhile, “is actually a toxin to the heart,” Carry said. “You can drink too much and go into atrial fibrillation (an irregular heartbeat that increases the risk for stroke). We call it ‘holiday heart syndrome’ and we see it a lot around Christmas.”

Carry has always told her patients not to overeat or drink to excess during the holiday season, and to work in some exercise to relieve stress. In these hyper-partisan times, she has another recommendation to bring to the dinner table.

“I’m going to start telling them, here are some safe topics to talk about,” she joked. “No politics, no religion. Let’s not get upset.”

But the responsibility doesn’t just rest with people who have health issues. Carry said family, friends and caregivers need to pay attention as well.

Chris Richards, the first 
Christmas after her stroke. 

(Photo courtesy of Chris Richards)






“Someone who’s had a stroke or a heart attack that weakened their heart or impaired their abilities may try to do what they did in the past, and they’re frustrated because they’re not able to,” she said. “I have to remind them, ‘You’ve already done this for 40 years. It’s time for somebody else to step up and do it.’”
The Richards family said they tried that first year after Chris’s stroke, but gave in too easily. They haven’t made the same mistake since.

“Before the stroke we’d sit on the couch and ask if she needed something and she’d say, ‘No I have it,’” Brittany said. “Now we don’t ask. We all pitch in a lot more. You have to stay aware as a caregiver, making sure they don’t overdo it.”

The result, she said, is a better Christmas.

“It’s made us closer,” Brittany said. “We’re able to step back and say we’re having another holiday together and that’s what matters. In 2014 (when Chris suffered the stroke), we weren’t sure if we ever would.”

Loren agrees, with one wry addendum. “Everybody pitches in,” he said. “But we still do it her way.”

If you have questions or comments about this story, please email editor@heart.org.

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American Heart Association News covers heart disease, stroke and related health issues. Not all views expressed in American Heart Association News stories reflect the official position of the 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.

Life without Logic

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   

www.unitedstrokealliance.org

The following was originally posted in the StrokeNet Newsletter 

December 1, 2017. 

By David Wasielewski

Memory and Function Deficits

Many stroke survivors experience deficiencies in memory and executive function after their stroke. These issues can be similar to those experienced with Alzheimer’s. The survivor becomes unable to process any multistep processes or process a logical train of thought. This can be frustrating for caregivers as it appears that the survivor is purposely ignoring instructions. Somehow these folks just refuse to listen or understand, no matter how much effort is put into explaining the process and their part in it.

Speaking loudly and slowly makes no impression. In fact it makes things worse. The survivor becomes aware of the frustration and anger but cannot determine why it is their ‘fault.’ The only thing left is bad feelings: frustration, anger and sadness. Caregivers need to understand that this logic process is no longer a part of the survivor’s capabilities.

The notion of action and its consequences may no longer exist. A therapist explained the process to me. The logic and executive function are no longer possible in the injured brain. What does remain, however, is the emotional component of the process. The brain can still process emotions. Anger and frustration exist but the survivor cannot understand why.

So, how does the caregiver cope? Processes need to be broken into simple single steps. For example, the caregiver cannot rely on the survivor to get breakfast on their own. The caregiver needs to break the process into its components. Go to the cabinet, get a bowl, get the cereal, get a spoon, go to the refrigerator, get the milk, pour milk in the bowl…. etc., etc. Arguing about why something needs to be done is pointless here.

This can be especially frustrating when dealing with issues of personal hygiene. The embarrassment component remains while the inability to process multistep instructions can have very messy consequences.

The caregiver needs to realize that no amount of explaining is going to make the problem go away. The reality is that the caregiver needs to let go of the need to explain, accept the situation and incorporate the new reality into their daily routine. Making life as simple as possible for the survivor is a reasonable way to deal with the potential frustration. Explaining ‘why’ becomes pointless.

Remove logic from the situation and simply be with the survivor as they move very slowly through their day. This is especially difficult for caregivers but can help reduce stress for both the survivor and caregiver.

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

Copyright ©December 2017

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.

Ten Tips for an Easier Holiday Season

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

www.unitedstrokealliance.org

The following was originally posted in the StrokeNet Newsletter 

December 1, 2017. 

http://www.strokenetwork.org/newsletter

by Deb Theriault

Enjoy Yourself!!

Yikes!! Another holiday season is here. How did this happen? 😊 Back in 2012, I wrote an article entitled “Suggestions for a Simpler Post-Stroke Holiday.” Here’s a “re-do” on some points I covered then, plus a few new ones that could make the difference between enjoying vs. dreading the holiday season.

1    “Re-imagine” your holiday.

 Feeling a bit “empty” about the holidays? List what you’d like

 your holiday to be, thencross off one item that means the least 

 to you. Repeat until you’ve winnowed the list down to 3 or 4 

 realistic “wishes.”

The remaining items are the ones that mean the most to you; make them a reality. Don’t feel guilty for letting go of meaningless obligations.

2    Take LOTS of breaks

It’s easy to overdo when handling holiday preparations. Suggestion: set a timer to remind you to take breaks, or have a relative or friend call you at pre-set times to remind you.

3    Take part in at least one special activity (besides attending 

      services)

   Some Ideas:

   ● Attend a tree lighting ceremony, holiday concert or play

   ● If ambulatory, take a winter nature walk, or walk in an urban

      setting that’s decked out for the holidays

● Enjoy holiday lights: drive, or walk, through your neighborhood or go to a holiday “light show” in your town; if nothing else, search on-line for holiday light displays. Sounds strange, but many sites post terrific light displays from around the country and, for that matter, around the world.

● - If you feel up to it:

● help hand out presents to disadvantaged kids, kids of military members deployed overseas or kids in the hospital over the holidays

● volunteer at a food bank, soup kitchen or local animal shelter, to give “regular” volunteers a break.

4    Decorate easier

● Choose a couple rooms (or foyer) and highlight the fireplace, door, special window, table, sideboard, or hutch, etc.

● Use “projection” lights to brighten the outside of your home vs. stringing traditional lights. Projection lights are getting better each year, and they create a lovely effect.

● Use LED candles; they’re looking more realistic every year.

● Use floral or fruit “picks” to decorate your tree, a wreath, or just about anything; the effect can look surprisingly professional. Reasonably-priced picks can be had at “dollar”, discount and craft stores.

● Display fresh greens, berries and pine cones, or various glass ornaments, in a large bowl

● Just place some large bows in high profile areas; again, “dollar” and discount stores are good sources.

5    Give it up

● Give away decorations you no longer use. It can feel uncomfortable giving up things that have been a part of your holidays over the years, but maybe it’s time to let others enjoy these decorations as much as you have.

● Give up attending meaningless holiday parties. If you aren’t excited about going, then skip it.

6    Simplify gift giving
● Give people gifts they can “experience”: tickets to a special event, concert, play, or the zoo, museum, movies, amusement parks and other attractions. Tickets for nearly all of these can be purchased on-line.

● Give gift cards to restaurants and eateries.

● Purchase the recipient a class or lessons for yoga, arts, crafts, a sport, meditation, dance, cooking, tai chi; the possibilities are endless. If the pickings are sparse in the recipient’s locale, consider giving self-enrichment classes that can be taken on-line.

● Give a “food subscription” (coffee, fruit, candy, treats, you name it) even if just for a couple months

● Make a donation (in their name) to a person’s favorite charity

● When in doubt, a well thought out gift card is fine

7    Pass the baton

There’s no shame in asking others to take over holiday gatherings, or to bring food to your event. My family’s been bringing a side dish or dessert to our Christmas Day celebration for some time now. Last year I even ordered the main dish from a local Whole Foods market. I didn’t regret it. What’s important is being together to enjoy the food.

In the next couple years, I’ll pass the baton for Christmas Day festivities to one of my daughters-in-law. It’ll be hard for me to give up this “sacred” tradition, but I’m sure I’ll get over it. 😊

Also, most families have special holiday foods. Pass these family recipes on to younger generations, by photocopying the recipes and putting them in a binder, OR by scanning the recipes and gathering them into a digital file on a “flash drive”.

8    Initiate a “no politics”/ no controversial talk policy at 

     gatherings

If your family / friends are mostly reasonable, but prone to get into political (or other “charged”) arguments, politely tell your guests in advance that it will be a “no political talk” / “no controversial talk” event (if you’re not hosting, ask the event’s host to announce this).

If anyone ignores your wishes, you (or the host) should calmly call a halt to the arguing, and remind everyone about the rule. Redirect the conversation by having each person tell about an interesting activity or thing they did during the past year.

Anyone who absolutely refuses to comply with the rule should be asked to leave. (If you’re at another person’s house and the obnoxious person won’t leave, then you may want to excuse yourself and go.)

Believe me, most of the other guests will be happy that these selfish individuals were asked to take a hike. Either way, whatever you do, stick to your guns, if your family / friends try to persuade you otherwise. You deserve much better than a rotten time and unhappy memories.

9    Meditate on the meaning of the season
Regularly take a few moments to re-charge your batteries by actualizing what the season is supposed to be about: family, friends, selflessness, sharing, kindness, giving and caring. No matter what, keep focused on these.

10    When all else fails……

If you become overwhelmed, remind yourself that this too shall pass (until next year).

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Deb survived her third stroke in 2006. In addition to her work with the Stroke Network, Deb is Treasurer for the W. Pa. Division of the US Fencing Assoc., does community gardening in her neighborhood and is a professionally-trained artist who has been specializing in figure drawing for many years.

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Copyright ©December 2017

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.

A Beautiful Fall Day in Colorado – My Stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   
www.unitedstrokealliance.org

The following is an article from the American Heart Association Support Network blog: 

https://supportnetwork.heart.org

One Year Later by Keri Mahe

November 3, 2016 began as any other ordinary day for me. I woke up before my family as usual and attended my daily 5:30am spin class. I then began the typical morning routine of rushing to get the kids to school and preschool then hurrying to start my own workday. After I dropped the kids off, I made a stop at our local coffee shop for a pumpkin spice latte.

It was a beautiful fall day in Colorado. As the barista handed me my latte, I was surprised I could not feel the warmth of the cup against my hand. I continued on however, grabbed a table and opened my laptop to check email and begin my day. As I began to sip and type away, the left side of my face started tingling. I stopped typing and took a deep breath.

Up until that point in my life, I had never had a health issue. The only trips to the hospital were to have my two beautiful children. But... I knew something was very wrong and instinctively knew it was neurological. I texted my husband, "I think I am having a stroke" and then went to the nearest hospital as fast as I could.

I was right. I suffered a stroke in my brainstem. The stroke was caused by a cavernous malformation that had bled. Weeks later it bled again. Another stroke. Then a decision to have brain surgery to remove the cavernous malformation.

I prepared for surgery and recovered from stroke #1 and #2 at the same time.

On March 15, 2017 I underwent a craniotomy at Weill Cornell/NY Presbyterian Hospital in New York City. My surgery was 100% successful. My recovery ... long. I could not walk, had double vision, balance issues, tinnitus, jaw tightness, and pain. I lost facial movement in the right side of my face and the neurofatigue was and still is sometimes paralyzing. But I am a survivor. I am recovering and learning.

Here are the 4 most important things I learned from surviving stroke and brain surgery.

There was more love around me than I ever knew existed before.

I had incredible support from my husband and my family. They carried me through the entire process. I was amazed, however, at the people who I hadn’t heard from in years, or just people who knew my family that sent their thoughts strength and love. Meal deliveries would come, flowers, hugs and calls. Prayer groups formed and letters from people I didn’t even know would come to me. Just recently I got a note from my 3rd grade teacher whom I haven’t seen or spoken to in over 30 years - since the 3rd grade! She was my most favorite teacher of all. She made me feel I could do great things in life and I held on to those feelings long after I left her classroom. She had heard my story and wrote to tell me how inspired she was by my courage and bravery. I was stunned to hear from her. This note is one of the most precious gifts I have ever received.

I needed support.

I also began to realize I needed the company of others who had been through what I was going through and how important and healing those conversations were to me. I joined support groups and met others and listened to their stories. I shared mine. This was invaluable and a critical turning point in my healing process.

Even with all this love coming my way … it was (and is) very, very hard. As recovery went on and I finally went back home to Colorado, I had to learn how to ask for help, how to speak up when I knew I was pushing it physically and mentally and how to say no to a lot of things I wanted to do but simply was not ready to do. It was hard especially when I could not be there for my children like I wanted to. It was also a greater lesson in life ... to keep my own peace and pace and to love myself through patience and kindness.

I am much stronger than I ever believed.

I had to learn to literally put one foot in front of the other after brain surgery. As a runner, I was humbled by having to use a walker just to leave my bedroom those initial weeks. Every morning I would wake and the walker was the first thing I would see. I think I actually cursed at it one morning. I was determined to move on from the walker. I am now running 3-5 miles a few times a week. My goals in life are larger now than before because I know what to do in order to reach them.

This whole experience is a blessing.

Yes, I just wrote that. I am 41 years old and I feel like I have been given a second and third chance at life with a long runway to make things even better than they were before. I have seen the very best in my family and friends through this experience and I have seen the best in myself. I know the importance of self-care and that everything has a process to it. I am empowered to give back to organizations and groups that support and help women who are recovering from stroke. This experience, while heavily traumatic, was a blessing in so many ways. One in which I will carry with a loving, supportive heart and a determined mind for the rest of my life. My 3rd grade teacher will be proud

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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.

Teenager's Stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   

www.unitedstrokealliance.org

The following is from American Heart association News:

https://news.heart.org

By AMERICAN HEART ASSOCIATION NEWS

Jasmine Harris had a stroke six months before her high school graduation.

It started with a headache a couple days before Christmas. The family from Raleigh, North Carolina, had spent the day volunteering so her mother, La’Wana Harris, assumed her 17-year-old daughter was just tired.

But the headache didn’t go away after taking a pain reliever. Then, the day after Christmas, she began vomiting in the middle of the night. La’Wana figured it was a stomach virus.

La’Wana was picking up ginger ale and crackers the next morning when she got a frantic call from Jasmine.

“It was just gibberish, and I realized she could be having a stroke,” said La’Wana, who raced home and found Jasmine upstairs “with a look on her face of sheer terror and confusion.”

“I felt completely lost, and I wasn’t sure how I got where I was,” Jasmine said. “I kept trying to tell my mom something wasn’t right, but all that was coming out was mumbled words.”

La’Wana drove Jasmine to a nearby hospital and demanded the triage nurse get them immediate help. The American Heart Association recommends people call 911 immediately if they experience stroke symptoms such as face drooping, arm weakness or speech difficulty.

“Once they took her blood pressure, they called the code and doctors and nurses came running from everywhere,” La’Wana said.

Testing showed Jasmine had a blood clot toward the back of her brain, along with a hemorrhage near her temple. Jasmine was put on life support and transported to Duke Children’s Hospital in Durham.

Jasmine lost consciousness soon after arriving at the hospital and was put under sedation. She woke up three days later.

Her speech and mobility were limited, and she struggled with short- and long-term memory.

Jasmine Harris (left) with her mom, La’Wana, at a health fair in 2014. 

(Photo courtesy of La’Wana Harris)

Doctors aren’t sure what caused Jasmine’s stroke. Such cases are referred to as cryptogenic strokes, which account for an estimated 30 percent of strokes caused by a blood clot.

Stroke is the nation’s No. 5 cause of death and a leading cause of disability among U.S. adults. Although the rate of stroke deaths fell 38 percent between 2000 and 2015, that pace has slowed for African-Americans since 2012, according to a recent report by the Centers for Disease Control and Prevention. African-Americans are most likely to die from stroke, the report said.

Following her stroke, Jasmine underwent outpatient therapy to rebuild muscle strength and help her body relearn how to do everyday activities.

“I remember laughing and crying at the same time when I first tried to go up the stairs,” Jasmine said. “I just couldn’t get my body to understand how to do it.”

Household duties shifted, with Jasmine’s father, Eddie Harris Sr., taking over the cooking and other chores so that La’Wana, who took time off work, could pour herself into helping Jasmine recover, advocating for her care, learning about new therapies and trying to understand more about stroke.

“I just couldn’t believe this could happen to someone so young,” said La’Wana, whose two older sons, Eddie Harris Jr. and Malcolm Harris, were away at college at the time. “The physical and emotional toll was incredible.”

Jasmine Harris (middle) with, from left, her
brothers Eddie Jr. and Malcolm, son Jaden,
mother La’Wana and father Eddie Sr.
(Photo courtesy of La’Wana Harris)

La’Wana grappled with anxiety, not knowing whether a full recovery would be possible for Jasmine and navigating the ups and downs of the months that followed.

“Being a caregiver, it’s a huge responsibility, but it’s also an honor,” La’Wana said.

“It was so much more than the event that happened to her brain. I also had to hold her heart during that time, because not everyone around her knew how to respond. It was difficult for her to come to grips with what happened to her.”

Jasmine was able to graduate high school on time and attend the Art Institute of Charlotte, where she pursued a major in fashion marketing.

Now 22, Jasmine said the experience has motivated her to make lifestyle changes to protect her heart and brain health, including avoiding the junk food she favored as a teen, eating more, drinking water instead of soda and getting plenty of exercise.

Lifestyle changes are part of the plan that stroke survivors should develop with their doctors to prevent a second stroke, according to the AHA. Medications to manage stroke risk factors and the addition of a blood-thinning drug such as aspirin may also be part of the tailored prevention plan.

After taking a break from school to have her son, Jaden, who is now 2, Jasmine is now taking classes online and starting a mentor program called A Queens Etiquette to help teen girls handle peer pressure and bullying, and develop good study habits in preparation for college.

“Even though I know I had a stroke, my mom was always encouraging me and telling me not to be afraid,” Jasmine said. “If I didn’t have my mom there to support me, I don’t think I could be where I am today.”

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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.

Take an Active Role in your Recovery

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   www.unitedstrokealliance.org

The following is from the Strokenet Newsletter
http://www.strokenet.info

By David Wasielewski

Just Do It!!

Stroke survivors are all familiar with the notion that every stroke is different, every survivor is different and so recovery means different things to each individual. An important follow-up to these notions is that each survivor and their caretakers need to actively participate in their individual recovery. Each survivor will experience any number of physical and/or mental deficits and be approached by any number of healthcare professionals about treatments and therapies that can enable recovery.

Trying to address every deficit at once can be difficult if not impossible for the new survivor. The stress of doing so can be overwhelming and may even result in more damage. In ideal circumstances a team of healthcare professionals, including doctors and therapists, will help the patient determine a sensible approach to rehabilitation. A good team will begin by assessing the deficits and determining, with the survivor and caregivers, what the survivor’s priorities are. Of course, issues like eating and swallowing will be priorities for everyone.

But once those are addressed other priorities should be managed by the survivor and caregiver. They should become active in the recovery process. Asking questions is the best way to start to understand why certain therapies are added to the routine. These questions will help the survivor to better manage their expectations. When will my hand begin to move again? How long might it take till I can walk again? The answers will likely be uncertain but those discussions will help the survivor manage the recovery process.

Understanding how the body and brain heals itself will provide insight into one’s adventures through therapy. Typically, recovery is not overnight and requires setting of long term goals. Managing of recovery and becoming comfortable with your new situation becomes even more important after your immediate recovery team is disbanded. You are sent home or to another new facility to continue with recovery. The patient and caregiver need to balance their expectations and progress over time.

A growing list of medications to manage spasticity, high blood pressure and other issue needs to be balanced against the side effects and their effect on one’s quality of life. My experience was leaving the hospital with a list of meds that addressed the doctor’s concerns but had a seriously negative effect on my quality of life. That same regimen of meds led to a profound disruption of sleep and ongoing fatigue that left me unable to function during the day.

My response was to address these concerns with my doctor and work with him, balancing the meds and their side effects while maintaining a quality of life that I found acceptable. Over a few visits we reduced the number and dosage of meds eliminating many of the fatigue and sleep issues. Over the years my doctors realized my resistance to simply adding additional meds to my existing regimen. I have taken on an active role in management of my recovery and quality of life as I deal with the remaining deficits.

My doctor and I discuss changes carefully before new meds are added or additional therapies are scheduled. We often arrive at a point where I agree to try the meds but the decision as to their effectiveness, and whether to continue with them is left to me. It is easy to simply follow the doctor’s advice and directions but survivors must be careful when they leave those decisions completely up to the doctor. Good doctors will encourage this participation, but it is up to the survivor to ensure that this happens.

We each hopefully arrive at a point where we need can successfully adjust to a new life where we can balance our new capabilities with an acceptable quality of life. To do that we need to actively participate all along the way.

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

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Copyright ©February 2017

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.

World Stroke Day Is October 29th

The following is from the American Heart Association News website. https://news.heart.org/

World Stroke Day Is A Great Time To Take On The No. 2 Killer Around The Globe

by Nancy Brown, Contributor
CEO, American Heart Association

The story seems like fiction.

A 9-year-old boy in Latin America loses his mother to a stroke. His six older siblings raise him, providing the guidance and financial support to become the only member of their generation to attend college. Then he goes to medical school. Decades later, he’s known around the world as a physician, professor, scientist and writer focused on the disease that claimed his mother.

But Dr. José Biller’s tale is true.

And in the days leading up to Sunday – which is World Stroke Day – he’ll be doing what he does all year long: working to turn a spotlight on the second most common cause of death in the world and the No. 1 cause of adult disability.

About every 40 seconds, someone in the United States has a stroke. A stroke-related death occurs about every 4 minutes. Those stats are even more excruciating when you realize that 80 percent of strokes are preventable and that advancements in treatment have improved the odds of recovery.

“What’s your reason for preventing stroke?” is the theme of this year’s World Stroke Day. For Dr. Biller, the reasons are many, and they date back to the late 1950s.

Osias “Oscar” Biller and his wife Elena emigrated from Europe to South America in 1920, settling in Argentina then moving to Montevideo, the capital of Uruguay.

Oscar owned a restaurant and Elena was known as a kind, gentle, gregarious woman. The family was close-knit, with all seven children often gathering for meals and celebrations. The large brood set the Billers apart in their neighborhood as most families had only two kids.

Soon the Billers stood out for another reason.

Oscar died of a heart attack. Six months later Elena died of a stroke.

“This was the first time I encountered the word ‘stroke’ or ‘brain hemorrhage,’” José said.

His four brothers ranged in age from upper teens to early 20s, and they worked hard to keep the family afloat. His two sisters helped care for him. Seeing how stressful life was for them, José sought a different path.

“I had a lot of respect and love for my siblings because of what they did and the opportunity I was given,” he said. “I never took anything for granted.”

In medical school, José was fortunate to have excellent professors in neuroanatomy and neurology. He set out to become an internist until a rotation with a neurologist introduced him to that field’s challenges and the critical thinking skills it required.

Add in his personal experience and he’d found his calling.

“Stroke is one of the conditions where the affected patient is not the only one who has to overcome a number of issues – it’s a family disease,” said Dr. Biller, who is now the chair of the Department of Neurology at Loyola University Chicago Stritch School of Medicine.

Beyond the obvious pain and anguish endured by a stroke patient, the impact can reverberate throughout a family.

It can start with the need for relatives to become caregivers. This could be for days … or decades.

Once a close relative has had a stroke, it’s another risk factor for you. You now have a family history.

“The education of family is critical, particularly among certain socioeconomic groups that perhaps do not have knowledge of the warning symptoms or risk factors,” Dr. Biller said. “Therefore I always talk about prevention. It may not be a very sexy subject, but it’s a critical component of health care.”

High blood pressure, also called hypertension, is the No. 1 cause of stroke and the most important controllable risk factor. Getting it under control usually comes down to lifestyle changes such as eating healthier, becoming more physically active and drinking less alcohol.

Controlling blood pressure also lowers your risk of heart disease.

***

Educating people about stroke has all sorts of great ramifications. While prevention tops the list, another key is teaching the warning signs.

Do you know how to spot a stroke FAST?

“Oftentimes the person at home with Grandma or Grandpa is a 

child,” Dr. Biller said. “In our society, we need to teach those 

warning signs to children at the grade-school level and to 

incorporate them in cartoons and other things aimed at children.”

Another component of stroke care that drives Dr. Biller is recovery. 

He’d like to see more emphasis on programs that help stroke 

survivors rehabilitate and reintegrate into a quality life.

Something else he’s pushing: overlooked complications, such as 

depression, which can afflict as many as 50 percent of stroke 

survivors.

“Also the proper care of the caregivers,” he said. “They should be 

part of the equation, too.”

There are two primary kinds of stroke: hemorrhagic and ischemic.

A hemorrhagic stroke means it stemmed from bleeding in the brain.

That’s what Elena Biller had.

An ischemic stroke means it’s caused by a blood clot. That’s what

took the life of Dr. Biller’s oldest brother.

While stroke is often considered something that happens to the 

elderly, that wasn’t the case with Dr. Biller’s family: His mom was 

in her 50s and his brother was 62.

Perhaps more relevant than their age is the timing of their strokes.

His mom died in 1957, his brother in 1991. It wasn’t until the

mid-1990s that major advancements in stroke care have greatly 

improved the chances for survival.

The first big advancement was a clot-busting medication called tPA

which can do wonders when delivered within the first four and a 

half hours of a stroke’s onset. This is another reason why it’s 

so important for people to know the warning signs.

The next wave of innovation brought new surgical and 

endovascular tools that have further brightened the outlook for 

stroke patients. The stroke systems of care, which start the moment 

someone calls 911, and improvement in stroke units have also seen 

remarkable advances.

“The advancements in the last two decades have brought us a world

apart from where we used to be, ” Dr. Biller said. “We have to

acknowledge that our population is growing and aging, and this 

means  more people will be afflicted. So we have reasons for

hope – but there’s still a lot of work to do!”

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Understanding Common Post-Stroke Medications

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance   www.unitedstrokealliance.org

The following is from the Strokeconnection website: 
http://strokeconnection.strokeassociation.org

by Jon Caswell

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.

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.

Statins

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 Connectionwebsite.

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 StrokeAssociation.org.