Sunday, November 18, 2018

Warning Stroke, But Didn’t Seek Help


www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
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Survey: 1 in 3 adults may have had 
warning stroke, 
but most didn’t seek help
By American Heart Association News
0501-Feature-Stroke_WP

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

Here is a better guideline we think should be promoted:

BE-FASTER

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

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

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

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

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

Time is extremely important
when treating stroke. 
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American Heart Association News Stories

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.

HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.

Sunday, November 11, 2018

Understanding Common Post-Stroke Medications


www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
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Understanding Common Post-Stroke Medications
BY JON CASWELL

http://strokeconnection.strokeassociation.org


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

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

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

“Blood Thinners” aka Antiplatelets & Anticoagulants

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

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

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

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

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

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

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

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

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

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

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 Connection website.

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

External Barriers



It’s too complicated!

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





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

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






It costs too much!

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





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




Internal Barriers

I don’t really need this.

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





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

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





I have a hard time remembering.

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





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





I don’t know why I need this.

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





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





I just can’t get this into my routine.

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





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

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





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

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





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

For more information on things you can do to prevent another stroke, visit StrokeAssociation.org.
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Monday, November 5, 2018

Luckily, her daughter was home


www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
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Luckily, her daughter was home -- and remembered what her science teacher said a few days before

By American Heart Association News


Days after learning about stroke at school, Katie Murphy recognized her mother's symptoms and got help. Katie (left) with mother Christa Murphy. (Photos courtesy of Christa Murphy)

Christa Murphy was in the bathroom getting ready for work, yet the routine wasn’t going like it should.

She kept dropping the soap in the shower. She squeezed globs of toothpaste out of the tube, seemingly everywhere but onto the bristles of her brush.

“I started to feel really strange,” she said. “But I didn’t feel sick. I didn’t have a headache.”

With her husband out of town and her son away at college, the only other person home was her daughter, Katie, an eighth-grader. Katie wasn’t even supposed to have been home that Saturday morning; she was only there because a sleepover the night before got cancelled.

Katie was in bed, watching Netflix on her phone, when Christa went into the teen’s room and asked for help.

What Katie heard was gibberish.

“What’s wrong with you?” Katie said.

As Christa struggled to give a coherent answer, Katie remembered a lesson from her science class just two days before. Teacher Beth Tomlin told the students that when a friend of hers had a stroke, her words were jumbled.

Katie immediately called her dad, but he didn’t answer. So she called her grandmother, Christa’s mom. She told Katie to take a deep breath and call 911.

Christa and Katie Murphy with Beth Tomlin, the science teacher who taught Katie the signs of stroke.
Christa and Katie Murphy 
with Beth Tomlin,
  the science teacher 
  who taught Katie 
  the signs of stroke.
As Katie suspected, Christa was suffering a stroke – a blood vessel in her brain had become blocked. Thanks to Katie’s quick response, Christa got to the hospital in time to receive clot-busting medicine. In most cases, the medicine must be administered within three hours of the stroke’s onset; the sooner it’s delivered, the better the chances of recovery.
For Christa, the delivery came soon enough.

“It was like a switch was flipped,” she said. “Suddenly I was able to talk, my mind cleared up, and I knew I was going to survive.”

Christa was in the hospital for three days and underwent a series of tests. More than a year later, doctors still don’t know why she had the stroke. This happens in about 30 percent of all ischemic strokes; it’s classified as cryptogenic.

Christa – who lives in Menomonee Falls, Wisconsin, a suburb of Milwaukee – had no other warning signs. She has no family history, aside from a grandmother who died of a stroke at age 94.

Christa was 45. While in relatively good health, she faced plenty of stress as a mother, daughter and wife. She also worked two jobs.

Now, she’s more health conscious, eating better and regularly walking the family dog – a new addition since her recovery.

She also was recently an honoree at the American Heart Association’s Go Red for Women luncheon in Milwaukee.

Not only did she tell her story to about 400 attendees, she also watched for the first time a video in which she, Katie and Tomlin recounted the morning everything had to go right to save her life.

“The bond between the three of us will last a lifetime,” Christa said.

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
-------------------------------------------------------------------------------------------

American Heart Association News Stories

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.

HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.

Sunday, October 28, 2018

Caregiver Appreciation Day

www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
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The following is from the now discontinued StrokeNetNewsletter first posted in their August 2014 edition. Being a caregiver is one of the most demanding jobs there is. With the holidays coming up that extra stress is added to their already demanding tasks.

Also, today, Oct 29, 2018 is World Stroke Day. Here are some links from the USNews internet site that may interest you.

https://health.usnews.com/health-care/for-better/articles/2018-10-29/stroke-warning-signs-treatments-and-prevention
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http://www.strokenetwork.org/

Caregiver Appreciation Day
By David Wasielewski


This past month, our stroke support group held a caregiver appreciation day. This was an opportunity for us, as survivors, to acknowledge the essential support we receive from our caregivers, be they spouses, family members or other personal assistants. Rather than focus on survivor stories and conversations we turned the focus to those who care for us.

We all know and understood our strokes from the survivor perspective. This session was an opportunity for us all to better understand how our caregivers were affected by our stroke. During early recovery in the hospital we, as survivors, find ourselves to be the center of attention. Our world centers on us, our survival and recovery. The universe revolves around our hospital bed, as it should. Doctors, nurses and therapists are paid to attend to our every need regardless of our attitude.

It’s easy to become lost within ourselves and forget about the real world. As we adjust to our post stroke selves, everyone who knows us is making similar adjustments. One challenge for survivors in recovery is to recognize and continue to keep in mind that having a stroke is not just about the survivor. One of my clearest recollections during struggles to recover was being confronted by my wife who was my primary caregiver.

As I ranted about how miserable, tired and frustrated I was she very clearly pointed out to me that “This is not only about you!!” At that point it hit me clearly that the stroke had also thrown her life into chaos. My stroke had forced her into an unexpected role and a routine that she was unprepared for and struggling to navigate. I have shared this realization with other survivors and most agree that this consideration has had a positive effect on how they move through their recovery. The caregivers that hear this advice can also understand that it is OK to explain their point of view in the situation.

Each caregiver at our session was asked to describe what had brought them to the group. These descriptions lent a very different, often unexpected perspective to each survivor’s story. Familiar survivor stories took on a new twist. Things might have been much more serious that we had been led to believe by the survivor. The survivor may not have been as cooperative in therapy or at home as we were told. The caring relationships between survivors and caregivers often became clear as they chided each other with funny stories about their struggles. It was interesting that in these serious and challenging situations we were all most able to relate to these humorous moments.

Caregivers shared how their conversations with doctors and therapists shaped their expectations for their post stroke lives. They also commented on how these expectations compared to the actual lives they now led. It became apparent how the caregivers had become the ‘invisible’ victims of our strokes. Their struggles were often secondary to the survivor. Given the opportunity to speak in this forum was our way of acknowledging and validating their reality.

As the caregivers relayed their experience several commonalities became clear. Was anyone prepared for what happened? No. Were the caregiver’s expectations realistic? Often not. Was the experience stressful, horrible, life altering? Absolutely! Are the strategies for recovery and moving on different? Yes, all are unique. Does anyone regret having done what they did in order to get to this point? No!

Everyone has gained a positive new perspective on their lives. How they view their daily routines is radically different. Their priorities have been altered. Surprisingly, as bad as these experiences were, most everyone agreed that the stroke had changed their perspective on life in mostly positive ways.

As a survivor and support group advocate I would encourage other groups to give their caregivers an opportunity to be recognized and validated. A day of appreciation is never wasted.

The following article details how caregiving can seriously affect the health of caregivers and the very real physical and emotional toll that caregiving has on a family:


http://hsd.luc.edu/newswire/news/stroke-caregivers-are-risk-depression
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RRSC Blog Editor Note: The preceding link from the original post is no longer available. I included a link below that may be of help to caregivers, helping them recognise depression symptoms and treatment:
https://www.caregiver.org/depression-and-caregiving

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Copyright @August 2014
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, October 21, 2018

Tips for Families: Communicating With a Stroke Survivor

www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
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The following is from the October 2018 American Stroke Association Stroke Connection web site:
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Tips for Communicating: Different Types of Aphasia After Stroke
For families living with aphasia due to stroke
BY BETH CRAWFORD, MS, CCC-SLP

Companion piece to "Caring for a Survivor with Aphasia" in our Stroke Connection Fall 2016 issue.


Beth Crawford, MS, CCC-SLP

With a survivor with receptive aphasia

“Never assume that the person with receptive aphasia is comprehending your message,” Crawford said. Always verify they understand what you said by presenting your messages in a variety of ways -- writing, drawing, gesturing, looking at pictures, etc. For the person with aphasia it can be exhausting trying to keep up in a world full of words. Caregivers need to be sensitive to this fatigue, and recognize if they are not in an ideal state for comprehending language. Set the stage for successful communication by maintaining good eye contact, positioning yourself on the same level and offering a listening attitude. Dedicate some time to the interaction rather than adding to the pressure by rushing. “For someone with receptive aphasia, the actual words may not sink in, but these nonverbal cues (setting the stage, eye contact, a listening attitude) will send a clear message that you believe them to be a competent, intelligent communication partner,” she said.

With a survivor with expressive aphasia

When communicating with someone with expressive aphasia, never assume that you received the message that was intended. You have to go back and verify that you understood accurately. “You can do that in several ways, but most commonly you would try to restate their message using simple language or ask yes/no questions to verify that you understood with accuracy,” Crawford said. Accept communication in any form, and don’t fake understanding because you don’t want the survivor feel bad. Be honest when you hit a road block and ask for permission to take a break and come back to it later if you can’t think of any other way to facilitate that interaction. “But when you ask permission to take a break and come back later, make sure that you follow up on that.”

With a survivor with global aphasia

“With global aphasia, you have to continually remind yourself that verbal loss is not the same as cognitive loss,” Crawford said. “Even though they can’t always reveal it, they still can reason and use their judgment.” When communicating with a survivor with global aphasia, decrease distractions and pay attention to body language and facial expression; engage all of the senses when you’re trying to interact and communicate. “Don’t avoid interacting because it’s hard. Even if you can’t communicate specific messages all of the time, you can still achieve a social connection. Find ways to enjoy each other that don’t rely heavily on words. So you may listen to music or take walks, appreciate art, those kinds of nonlanguage activities.”
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Copyright 2018 American Heart Association/American Stroke Association. All rights reserved.

Sunday, October 14, 2018

Yoga for Stroke Survivors

www.strokecamp.org



http://www.unitedstrokealliance.org/


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

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

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

Show Me The Booster Box
*****************************************************************
*****************************************************************
The following is from an article written by Walt Kilcullen, a staff member of the Stroke Network's Newsletter which, unfortunately, has discontinued their monthly newsletters. This article was first posted in September 2011 and again in June 2014.
The StrokeNetwork itself still exists and is an excellent resource for stroke survivors and caregivers. you may join them at: http://www.strokenetwork.org/

If you have any questions about this article you may contact Walt at: at wkilcullenstrokenetwork.org
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Yoga for Stroke Survivors
By Walt Kilcullen



I started writing an article on fitness after a stroke and discovered there is a wealth of information out there giving great advice on keeping fit with exercise. I had almost completed the article when a member of my support group introduced me to adaptive yoga for people with disabilities. I began reading about this and realized that it would be better if I could see an adaptive yoga class in action. So last week, that is what I did.

The class was instructed by 
Della Moses Walker who was 
trained specifically to teach 
adaptive yoga at the Wellness
 and Enrichment Center in West
 Orange, New Jersey.

Many of the participants were
stroke survivors. The emphasis was on the individual. The pace for progress was slow so that each individual could advance at his own pace.


Della emphasized the following:
  • Yoga is a mind body connection.
  • Yoga with meditation yields relaxation of the mind and body.
  • Breathing in yoga is an important element for relaxation and concentration.
  • Adaptive yoga is designed to fit individual ability.
  • Yoga and meditation can be done independently, but it is far more beneficial if they are done together.

John McClain then led the class
to meditation. We all spent 
about fifteen minutes meditating
under John’s direction. He 
showed us how meditation
relieves tension, helps you to
find peace, creates relaxation,
and puts your mind in a natural
state.

Two common problems for stroke survivors are balance and 
weakness affecting an arm, a leg, or both. The yoga instructor 
circulated and gave instruction to each participant as needed. Some 
students were able to sit on the floor as a regular yoga class would 
begin. Others were able to lie on a mat. Some were able to stand 
holding on to the back of a chair, while others sat in chairs.

In yoga, there are many yoga poses (specific positions) that the
instructor uses. The goal is to improve balance, strength, 
flexibility, mobility, and to create an environment of relaxation
through breathing techniques. Following are examples of exercises
for chair yoga taken from Shirley Marotta,

Chair Yoga


Forward Bend – eases tension in the upper
back and neck. Breathe in and out as you
bend forward. Let your head and arms hang
over your knees. Relax into the position and
hold for a few seconds and keep breathing.
Breathe in as you slowly come back to a
seated position.

     Spiral Twist – increases circulation and
     flexibility in the spine. Sit facing forward 
     placing your left hand on the outside of your
     right knee. Place the opposite arm over the 
     back of the chair. Breathe in and breathe 
     out as you twist your body to the right.
     
    Turn your head as well. Push against your knee with your hand. Breathe normally and hold that position. Release slowly and come back to facing forward. Repeat on the opposite side if you are able.

Side Stretch – increases flexibility of the spinal
column, improves respiration, and reduces 
waistline.Sit facing forward with feet slightly 
apart, breathe in, and raise your arms out to both
sides.


Breathe out and bend to the left, reaching toward the floor with your left hand and your right hand pointing toward the ceiling. Breathe in and come back to the starting position. Repeat with the right side.


Knee Squeeze – relaxes lower back, improves digestion and respiration. Breathe out and breathe in and put both hands around the front of your knee. Pull your left knee to your chest while holding in your breath. Lower your head to your knee and hold for a few  seconds. Then release slowly while breathing out. Repeat on your right side.


Leg Lifts – strengthens legs and lower back, and
improves circulation to your legs and feet. Sit
and hold each side of the chair for balance.
Breathe out and breathe in as you lift
straightened left leg and flex your foot. Hold for
a few seconds and then slowly breathe out while
lowering your leg. Repeat with your right leg.


Sun Pose – improves circulation to your head,
massages internal organs, and limbers your 
spine and hips. Sit back in the chair with legs
apart and arms by your side.

Breathe out completely then breathe in and
with a sweeping motion bring your arms up
over your head. Look up and stretch. Breathe
out while bending forward between your legs
and if possible, put your palms on the floor.

Slowly breathe in while rising back up with
your arms over your head again, then lower your arms to the side.


Although the above chair exercises are beneficial, they are no
substitute for adaptive yoga classes because the instructor will
pattern your exercises to meet your individual abilities and needs.
You can find out where you can participate in adaptive yoga 
classes through the closest rehabilitation hospital. You may also see
if anyone in the local support group knows of such a program.

There are also two sources you may want to consider. The first is a
video called, Yoga: Renewal of Life (no longer available at this site), by the Rocky Mountain Stroke Center. Second is a book, Recovery Yoga: A Practical Guide For Chronically Ill, Injured, and Post Operative People by Sam Dworkis.

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Copyright @September 2011
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.