Sunday, November 12, 2017

Teenager's Stroke

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

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

Sunday, November 5, 2017

Take an Active Role in your Recovery

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

The following is from the Strokenet Newsletter

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.


Copyright ©February 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Friday, October 27, 2017

World Stroke Day Is October 29th

The following is from the American Heart Association News website.

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 

“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!”


Sunday, October 22, 2017

Understanding Common Post-Stroke Medications

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance

The following is from the Strokeconnection website:

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.


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

Sunday, October 15, 2017

Stroke Specific Things I Wish I’d Known Sooner

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance
The following was written by our Retreat & Refresh Stroke Camp director Marylee Nunley. I first posted it on this blog in 2012. I think it is worth re-publishing. Her husband John suffered a stroke and these are her thoughts based on her and John's new normal journey.
by Marylee Nunley

Hearing early on (in a kind, gentle, and positive way) that this is a permanent condition, but still not to lose sight of great possibilities. To be informed that recovery takes lots of time and patience by all.
The brain is injured and it may take up to six months or longer for it to heal and recover. After that time, the patient will be working with the undamaged parts of the brain through a lengthy but rewarding relearning process.
Understanding that each time there is a new environment, the survivor may need to re-learn things (shower at home different from the hospital, bed not as convenient, meals served differently, TV remote different, etc.)
How to find the handbooks from (online support group) or (NSA) at the onset. The internet and Facebook is full of things that help families understand the different parts of care and rehab that will be happening. Find Facebook support groups, attend a support group, there is lots to learn and you'll benefit from connecting with others.
Being given a list of stroke specific terminology would help, too.
Stroke survivors may seem to understand way more than they actually do. My impression was that if he heard it, he understood just like I did. That couldn’t have been farther from the truth. Receptive aphasia means that the person with the brain injury doesn’t hear and process the words the way they are spoken and may not understand what is said or completely misunderstand what is said. This gets better, but for us, has never gone away.
Progress will be in terms of months and years and for the rest of your life, not in just days and weeks.
More about the caregiver role and what will be expected once going home and about burnout. No matter how much energy and commitment we have, there will be a time we’ll just get tired of the responsibility.
More about aphasia----look at the person, go very slowly, know that even though they hear what you say, they may not fully understand.
Support groups—both survivors and caregivers need them.
What to look for with regard to depression (often comes out as anger or crying) from isolation and loss of parts of their life.
Understand how frightened the patient is and how lost they are in the world and may not understand what’s really going on.
Routine should become your best friend for a very long time.
ADL equipment, gadgets and gizmos. There isn’t time for the medical community to provide all this information and they don’t have the means (financially, insurance runs out) short of funding of some sort of program following discharge. Here is where support groups can help.
Understanding Health Benefits can be a challenge and making friends with a good social worker, discharge planner, or the insurance billing clerk can’t hurt.
Disability application is long and tedious. There are books that can help. Make the adjudicator your friend and follow through with their requests.

Well, that's my list. Undoubtedly you will have other items that you've encountered. If you want, go ahead and share them by leaving a comment. That way we all learn just that much more.

Sunday, October 8, 2017

A Journey to Self-Acceptance

Retreat & Refresh Stroke Camp

a division of United Stroke Alliance
The following is an article from the American Heart Association Support Network blog: 
by Angela Hager

Angela currently resides in Hoover, Alabama with her husband and two daughters. Her passions include stroke advocacy, maintaining a healthy lifestyle, writing and the art of Calligraphy. Sneak peeks into her personal and family life can be found on Instagram at angeladcalligraphy (Angela Dawn).

Stroke rehabilitation. Whether your stroke was diagnosed as major, mild, or somewhere in-between, rehabilitation is often a frustrating journey filled with every emotion imaginable. While each post-stroke journey is unique, I believe true healing begins the moment a Survivor not only acknowledges, but accepts, the one realization that we all must face no matter which area of our brain was affected: We are not the same person we once were nor will we ever be that person again.

For me personally, facing this truth was undeniably soul-crushing. I adamantly rejected the notion at the beginning of my rehab journey, as do many fellow Survivors. The mere thought of being permanently altered was enough to blanket me in a cloak of anger and bitterness. Denial became a daily crutch that I desperately needed; without it, I found it almost impossible to function.

However, as the days turned into months, I slowly began to realize that despite my best efforts, I was a different person. I began to accept my new challenges and limitations instead of continuing to fight what I knew in my heart to be true. As I learned to redefine a new sense of normalcy for myself, my focus also changed. Rather than fulfilling the role of a stroke victim, I became the hero of my own story; after all, I was a Survivor. I survived an experience that sadly, many do not. I had graciously been given a second chance and my eyes were finally opened; each day truly is a gift and tomorrow is never, ever guaranteed…

This past June marked my fifth-year post-stroke. My rehabilitation journey has been filled with ups and downs, tears of frustration and tears of joy. I have learned to take each day as it comes and to celebrate even the smallest of victories. When self-pity or depression tries to rear its ugly head, I simply close my eyes, put my hand over my heart and soak in the precious feeling of a beating heart…

No matter where you are on your own journey, I just want to encourage you to live your life to the absolute fullest. The first step in doing so is learning to love the new you, no matter how broken or damaged you may feel. Once you shift your perspective, you’ll find that life is in fact still beautiful, just as you are and always will be.

Wishing you all the very best,

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

Sunday, October 1, 2017

A Stroke Can Happen at Any Age

These videos were originally posted by the American Stroke Association in previous years.
May 2015

Four teen stroke survivors who share a special bond are graduating from high school this weekend. Over a 2-year span, four KC-area highschoolers suffered strokes. Finding each other helped with their recovery. And this weekend, they’re all graduating - right on time.
August 2014
Alex's Story

The International Alliance for Pediatric Stroke and the American Heart Association/American Stroke Association are teaming up to spread pediatric stroke awareness. Watch Alex’s inspiring pediatric stroke story to learn more. We encourage you to support this awareness campaign by sharing this video with your friends, family and colleagues. With your help we can reach our ultimate goal of increasing research to better understand how to recognize, diagnose and treat strokes in babies, children and the unborn. To learn more about pediatric stroke and other ways you can help, visit:
Thank you to our videographer and film editor Peter Soby of SobyVision! Contact: 402-670-2490
August 2014
Rhys’ Story

The International Alliance for Pediatric Stroke and the American Heart Association/American Stroke Association are teaming up to spread pediatric stroke awareness. Watch Rhys’ inspiring pediatric stroke story to learn more. We encourage you to support this awareness campaign by sharing this video with your friends, family and colleagues. With your help we can reach our ultimate goal of increasing research to better understand how to recognize, diagnose and treat strokes in babies, children and the unborn. To learn more about pediatric stroke and other ways you can help, visit: 
Thank you to videographer and film editor Peter Soby of SobyVision! Contact: 402-670-2490
Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to the American Heart Association News. See full terms of use.


Sunday, September 24, 2017

Visually Unimpaired

This essay was copied from the web site of the Rehabilitation Institute of Chicago with their permission and with the author's, Cari Biamonte, permission. Cari participated in a study done by the Rehabilitation Research and Training Center on enhancing the quality of life of stroke survivors.

This study was done to assess how writing in different ways about the experience of recovery can help physical and psychological health and activity after stroke.
By Cari Biamonte
© May, 2006

To look at me is to think I am the picture of good health. I am a 45-year-old Caucasian woman, five feet three inches tall, 103 pounds with an athletic build. I don’t drink, smoke, or do recreational drugs. I go to church regularly, work out at the gym, and floss my teeth before bedtime. I thought I was in control of my ever-challenging health issues. You see, I have a long history of health issues, none of which include heart disease, high cholesterol, diabetes, or obesity. Most people assume I am a runner. Indeed I am, or was, and will be again. I have no outward physical defects that say, “Look at me I’m a stroke victim,” but I am, or was, and NEVER want to be again.

Other diseases tested my character: childhood nephritis, ulcerative colitis, steroid induced osteoporosis, vertebral compression fractures, and chronic fatigue. Stroke was a word I was unprepared to hear. I have no family history of it, nor do I fit the profile for such a condition.

Apparently the onset of my stroke was blurred vision. Who knew? My eyesight went from focused to double to unconscious to enlightened. I guess you could say, “I was blind and now I see.” 

This is my story.

My eyes were closed and my body frozen in fear to the bed. I remember the doctor at the foot of my hospital bed talking into his voice recorder about my condition. He described me as one would an unremarkable specimen. I distinctly remember him saying that they wouldn’t know anything for three days. Three days? I opened my eyes and saw my mother. “GOD!” My insides screamed. “Not again. Holy Mother of God!” I thought. “My mother has seen me fall countless times before. Surely you must know the fear and pain she is feeling, for you too have watched your Son fall, suffer, and die. I just can’t put her through this anymore. I can’t stand to see her frightened. I want to live and take care of my parents, not have them continue to babysit me into adulthood.” That’s when it happened. That’s when things changed for me. There was this sudden awareness that all is well. And indeed it was.

My recovery was complete. Short of a three-week headache, neck and shoulder pain, fear of being alone and uncontrollable emotions, I was on my way to a new and exciting life!

What I didn’t know was how this sudden “relationship” with God would change my life and existing relationships. Suddenly I was struck with a conviction of all I did that wasn’t so “good.” My religion just flew out the window and my relationship with God was a sharp reality. The fact is my relationship was lost behind the trappings of religion. I didn’t have a relationship with God. In order to have a relationship, you need to spend time with someone. If I only spent one hour a week with my spouse, we would have a less then happy marriage, and so it goes with our Creator. I had a lot of work to do and a lot of forgiveness to seek.

For what purpose had I received such grace? I was feeling a tremendous amount of gratitude and responsibility to fulfill God’s will in my life. My sole focus quickly became just that. After all, I was spared from any visible impairment or death—it’s the least I could do. I felt oddly encouraged about the future, yet misunderstood by my fiancé. A faithless man, a scarred and bitter man, an alcoholic who was wounded by the Vietnam War. Visually unimpaired like me, yet damaged goods still the same. What a team we make. Oil and water.

It took a great deal of soul searching and much needed prayer before I felt at peace with my decision to marry this man and thus, began exploring the new me, as did my loved ones. I could see both wonder and confusion in the faces of those who have known me. In less than two years, I had lost my job that I held for 13 years, suffered a stroke, got married, and moved 140 miles from my home. Perhaps it was unfair of me to expect anyone to understand what it was I had been feeling. How do you explain a spiritual rebirth? A sudden wisdom into other’s circumstances, a deep familiar empathy with strangers, an unconditional love for those who’ve wronged you, and an “ooohhhhh I get it now” when reading the word of God. Finding that every waking moment is spent in constant prayer. Wanting nothing but solitude. Having nothing in common with the things of this earth any longer. Who can blame my husband for feeling left out and confused?

What my husband does have is a wonderful gift for providing for and protecting me. It was as if God placed him right there to physically catch me when I stroked. That’s when the Lord began his work in me. This new and different life of mine has given me the opportunity to seek the presence of God, discover who I am, and to focus on using my talents for the sake of others. Interesting stuff. Scary stuff too.

So I suffered a stroke. Others have suffered more, some less, each one differently. No one goes through this life unscathed. What matters most is not what we learn in the midst of our suffering, but that we persevere through the suffering learning to trust and believe in the greater good that is to be revealed. This is a very abstract concept for those with no faith, for faith itself is believing in what is not seen.

I come away from this experience with this advice. When faced with unbearable pain and burdens, get up in the morning, get dressed and get out of the house. If physically possible, walk to a coffee shop or restaurant where you could meet people, read and reflect. Spend time acknowledging your circumstances, accept what cannot be immediately changed, develop a strategy for recovery, and most importantly remain hopeful in things yet to come. Do not fear.

All material is the property of the Rehabilitation Institute of Chicago All rights reserved


Sunday, September 17, 2017

Awardee has seen stroke treatment transform


Jeffrey Saver, M.D., accepts the Meritorious Achievement award at the American Heart Association’s awards ceremony in June. (Photo by Tim Sharp)

The patient, young and pregnant, arrived at the hospital with a severe stroke. She couldn’t speak, comprehend or move the right side of her body.

When Jeffrey Saver, M.D., started his career decades earlier, there would have been little he could do to help the woman. But now it was 2006, and a lot had changed. The patient was treated with one of the first clot retriever devices designed to open a blocked artery in the brain, Saver said. She went on to function normally and gave birth to a healthy baby boy.

“An outcome that before was unachievable is now completely achievable,” said Saver, who has seen the world of stroke transform since he became a director of UCLA’s Stroke Center in 1995. “When I started, there was no proven treatment for stroke. I have been privileged to have my career occur in the first effective therapeutic era for stroke.”

Saver was recently honored in Dallas with a Gold Heart Award, the American Heart Association’s highest volunteer honor. Widely published, Saver’s contributions to stroke care, including systems of care and performance metrics, are immense. He has been the global or site principal investigator for more than 50 clinical trials. One of the most ambitious and groundbreaking was FAST-MAG, a first-of-its-kind study showing that paramedics can safely give intravenous medication to stroke patients in the ambulance.

It’s not surprising that Saver wound up in a medical career. Both his father and paternal grandfather were general practitioners. At age 3 Saver would go on house calls around Boston in his grandfather’s “1950s doctor’s car.”

Still, it was a challenging heritage, Saver said, because his love of math and science, a natural fit for medicine, competed mightily with his philosophical and linguistic interests. After some soul searching, Saver eventually found his home in neurology, where he has carved out a reputation for his tenacity and innovation in investigating stroke.

Saver said he was drawn to the intensity and emotional rewards of acute care and making a difference. The challenges were huge, and still are.

While stroke was the No. 3 killer in the United States when Saver finished his stroke fellowship in 1992, it has since moved to No. 5 thanks to increased awareness and treatment advances in recent decades.

“Clot-busting tPA — the ‘Drano drug’ — and clot retrievers are two therapies to open blocked arteries that have occurred over last 25 years,” he said.

“Once we proved that tPA worked, it was the effort of a generation to translate it into practice,” Saver said. “Emergency physicians were understandably reluctant, because it had risks and they didn’t have [all the knowledge] to make decisions on their own. And neurologists weren’t used to coming to the ER in the middle of the night and making those decisions.”

It was a 20-year effort of the AHA and the American Stroke Association to create a set of tools and policies that transformed the practice of stroke medicine in the United States, Saver said.

“Even more important was the notion of having designated stroke center hospitals and specialized stroke neurologists, with everyone working together to provide organized care,” he said. “Before it was Russian roulette whether or not a stroke patient got the best treatment, because an ambulance would deliver the patient to the nearest hospital instead of the one best equipped to treat the patient.”

Because of these and other efforts nationwide, the treatment rate for stroke patients with brain-saving clot-dissolving therapy tripled between 2004 to 2010. But the victories are mixed. One in six people will have a stroke in their lifetimes, and it’s the No. 2 cause of death worldwide, and a leading cause of serious disability.

With nearly 800,000 each year in the United States, “stroke is unfortunately still very common,” Saver said. “Although the per capita rate of stroke has been cut in half since 1990, the number of strokes is still increasing, taking into account people’s age — two-thirds of people who have a stroke are 65 or older.” Generally, stroke developments lag behind heart innovations, he said.

“It takes 10 years longer to develop something comparable for the brain. First, the brain and the brain vessels are more complex; we have a much more narrow margin of error,” Saver said.

“Second, there are somewhat fewer strokes versus heart attacks in the U.S. so it takes longer for us to recruit people into randomized trials and get definitive evidence of what works or doesn’t work.”

Sunday, September 10, 2017

Look Beyond U.S. Borders

The following is from a July 2017 American Heart Association report.

Traveling to hospitals in the United States is difficult for Yomi Ogun, M.D., a stroke researcher from Nigeria.

A clot-busting medicine to treat stroke is always in stock. In his native country, it’s a rare commodity. Ambulances in America can get patients to hospitals quickly, an underappreciated result of good roads. In Nigeria, Ogun said, stroke victims often die before reaching the hospital.

But although the care of stroke patients clearly differs, Ogun has noticed similarities in how stroke risk affects African-Americans and sub-Saharan Africans from countries such as Nigeria, Ghana and Cameroon.

More than two-thirds of African-Americans can trace their ancestry to those countries and others in the region. It will take collaboration between researchers in Africa and the United States to better understand how stroke and its risk factors affect their populations, Ogun said.

“You compare, you contrast, see areas of similarities, areas of differences — and then see how [to] improve,” said Ogun, a professor of neurology and internal medicine at the College of Medicine at Lagos State University.

The same could be said of studying stroke in Latin Americans and the nearly 57 million U.S. Hispanics.

Mexican neurologist Antonio Arauz, M.D., Ph.D., said considering that most strokes are preventable, U.S. and Latin American researchers must team up to figure out how behaviors, social dynamics and living conditions play a role in risk factors such as high blood pressure, diabetes and high cholesterol. Such insights could lead to more effective prevention strategies to reduce stroke rates.

“A Mexican in the United States… doesn’t have the same eating habits as he does in Mexico City or his place of origin,” said Arauz, a doctor and researcher at the National Institute of Neurology and Neurosurgery Manuel Velasco Suárez in the Mexican capital.

But although lifestyles may differ dramatically, what groups still have in common is genetics. A shared ancestry for populations living different lives in different countries may offer the most valuable clues to preventing strokes — both the United States and abroad.

Such investigations could help determine, for example, whether black Americans are genetically predisposed to strokes, said vascular neurologist Bruce Ovbiagele, M.D., chair of neurology at the Medical University of South Carolina.

“Even after we account for higher rates of diabetes or hypertension, even after we account for lower socioeconomic status for African-Americans, there’s still about a 30 percent higher risk of stroke [compared to U.S. whites that] we still can’t explain,” Ovbiagele said.

Studies could also help researchers understand how acculturation affects the health of immigrants compared to that of their U.S.-born children and grandchildren, said Jose G. Romano, M.D., a professor and stroke division chief in the department of neurology at the University of Miami Miller School of Medicine.

Stroke is the nation’s No. 5 killer and is a leading cause of disability. Worldwide, stroke is the second-leading cause of death. Estimates from the World Health Organization show the burden of death and disability from stroke is seven times higher in low- and middle-income countries, such as Nigeria and Mexico, than in high-income countries, such as the United States and Germany.

In the United States, stroke prevalence is higher among African-Americans than among whites and Hispanics. Yet both African-Americans and Hispanic-Americans face a greater burden of risk factors for stroke: They are more likely to have diabetes, obesity and uncontrolled high blood pressure compared to whites.

According to the Centers for Disease Control and Prevention, stroke is a top killer among Hispanic-Americans and African-Americans, ranking at No. 4 and No. 3, respectively. By comparison, stroke is the No. 5 cause of death for Americans overall.

Plus, statistics from the American Heart Association show African-Americans — the country’s second-largest racial group — are nearly twice as likely to have a first stroke and are about 30 percent to 60 percent more likely to die from a stroke compared to white Americans. Yet Hispanic-Americans are less likely than both black and white Americans to die from a stroke.

But seeing how U.S. data aligns with the experience of sub-Saharan Africans and Latin Americans presents a challenge, experts say, because reliable statistics are hard to come by.

For years, Ovbiagele said, researchers in Nigeria used data from a 1970s-era population study to estimate present-day stroke statistics. In Latin America, researchers long relied on statistics of U.S. Hispanics to calculate figures in their own countries, Arauz said.

Better, more current local data is now available, both experts said, but it is mostly from patient hospital records and doesn’t accurately reflect a country’s overall population.

Ovbiagele and his colleagues recently analyzed strokes in nearly 2,000 native Africans, African-Americans and European-Americans. The findings, published last month in Stroke, suggest race plays a role in the predisposition of certain risk factors for stroke, and possibly even the type of stroke.

Diabetes was more common among native African and African-American stroke patients compared to European-American patients. And nearly all — 93 percent — of native Africans had high blood pressure, as did 83 percent of African-Americans. Among European-American patients, 64 percent had high blood pressure.

The study also showed that hemorrhagic stroke — a type of stroke that causes bleeding in the brain and is strongly linked to high blood pressure — was much more common among native Africans than African-Americans.

“The nature of how you prevent strokes, the emphasis of that, should probably be a little bit different [for native Africans versus African-Americans versus European-Americans],” Ovbiagele said.

Even among U.S. Hispanic ethnic groups, a one-size-fits-all approach to preventing strokes may not be the best approach given that stroke and some of its risk factors appear to impact groups differently. For example, a 2016 CDC report found Puerto Ricans were more likely to report multiple chronic conditions such as stroke, high blood pressure or diabetes compared to people of Mexican, Cuban and Central American descent. Other research has reported that diabetes is more common among Mexican-Americans and Puerto Ricans — the two largest U.S. Hispanic ethnic groups — compared to Hispanics of Cuban and South American heritage.

“Although there are genetic factors involved in disparities, we believe the predominant factor in disparities is access to and use of health care, in large part mediated by socioeconomic factors,” said Romano, a co-investigator of the Florida-Puerto Rico Collaboration to Reduce Stroke Disparities project.

In Latin America, researchers have observed that high blood pressure is more common among Venezuelans, Chileans and Argentinians, and diabetes is more common among people from Mexico, Ecuador, Colombia and Chile.

Partnerships have already developed between U.S. researchers and international colleagues. Ovbiagele said the Medical University of South Carolina has ongoing projects in Nigeria and Ghana. Arauz and Romano recently worked together on a study comparing risk factors in stroke patients in Mexico City and Miami. But the researchers said collaborations between U.S. and Latin American scientists tend to be between scientists and not institutions.

The biggest hurdle researchers now face is money. Funding for international projects is hard to come by, said Ovbiagele.

But that hasn’t deterred Ogun, who feels a sense of urgency. His mother and a brother died from stroke, and another brother recently had one. Researchers worldwide have an obligation to share experiences, he said.

“If we don’t document all that we’re seeing now, how will those that come after us? What will they fall back on?” Ogun said. “We need to do research across the board. It cannot be unilateral.”

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.