Sunday, February 10, 2019

Why More People Don't Call 911 When Stroke Symptoms Hit




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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I believe this message is so important that I will leave it active until February 24th to make sure everyone has a chance to see it. It reflects our new acronym of :
B.E. F.A.S.T.E.R.
B.  Balance - sudden loss of balance
E.  Eyes       - sudden blurry or 
                       loss of vision
F.  Face       - sudden numbness, 
                      one side drooping
                       can you smile
A.  Arms      - sudden weakness in arms
                       can you raise both arms
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!
Almost two million brain cells die every minute.
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Why more people don't call 911 when stroke symptoms hit

By American Heart Association News
Person on headset
(PhotoAlto/James Hardy, Getty Images)
When stroke symptoms hit, not everyone calls 911 – a decision that has perplexed experts. Now, a small study reveals some of the reasons.

The research, being presented next week at the American Stroke Association's International Stroke Conference in Honolulu, included interviews with 38 stroke patients who drove themselves or had someone drive them to Baptist Health South Florida Hospitals rather than calling 911.

Lead researcher Maygret Ramirez said the most common reason, listed by nearly one-third of participants, was hospital preference and not knowing where an ambulance would take them. Other reasons patients provided were not realizing it was an emergency, having a family member who preferred to drive, or thinking they would get to the hospital faster if they drove rather than waiting for an ambulance.

"The fact that hospital preference is the number one reason for not calling 911 tells us we need to provide better education on this issue," said Ramirez, a nurse practitioner at Baptist Health Neuroscience Center in Miami. "People really need to understand that stroke can be a catastrophic event if not treated in time."

Patient concerns are not misguided. Guidelines recommend emergency medical teams take stroke patients to the nearest hospital that can deliver the clot-busting medicine alteplase. Ramirez said EMS teams are typically taught to refuse a patient's request to go to a different hospital.

Still, she said, that shouldn't dissuade people from calling 911. If a patient wants to go to a different hospital, "they could ask to be transferred (there) after the first assessment."

Fast action is essential in treating stroke, with early treatment leading to higher survival rates and lower disability rates. Yet previous studies have found more than one in three people who have a stroke don't call 911 and instead rely on self-transport to get to the hospital.

"We have to reinforce the idea that this is an emergency. We need more people to understand that when it comes to stroke, 'time is brain,'" Ramirez said, repeating a phrase coined in the 1990s to amplify the message that the longer you wait to treat a stroke, the higher your chance of brain damage.

Ramirez said she'd now like to see research that looks at the specific types of educational messages that will get people to call 911 during a stroke.

A stroke happens when blood vessels carrying oxygen to the brain are blocked or rupture, causing brain cells to die. In the U.S., stroke is the fifth most common cause of death. An estimated 140,000 people in the U.S. die of stroke each year. It's also a leading cause of disability.

Calling 911 for stroke is essential because it not only gets patients to the hospital faster but ensures patients are taken to a hospital that specializes in stroke treatment, according to the Centers for Disease Control and Prevention.

Dr. Kevin Sheth, an associate professor of neurology and neurosurgery at Yale School of Medicine who was not involved in the new study, said he was surprised by the results.

"I'd have thought the main reason for not calling 911 would have more to do with misinterpretation of symptoms, not hospital preference," he said. "And that raises some questions: What do we do about this? Do we need to provide more options for patients? Do we need to educate patients?"

Sheth said he's curious about whether socioeconomic and other factors such as race impacted whether people called for an ambulance. The findings are also limited by the small number of participants who were all treated at one hospital network in South Florida.

"The question of 'Why don't we get patients to the hospital faster?' is the biggest challenge in acute stroke research, but it's a problem we have not made much of a dent on yet," Sheth said. "Ultimately, we need to get more people to call 911 and get to definitive (stroke) therapy faster."

If you have questions or comments about this story, please email editor@heart.org.
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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, February 3, 2019

Taking medicine for a cold?




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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Since we are deep into the flu and cold season, 

the following article will be of interest to stroke survivors 

as well as those with heart conditions.
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(duckycards, Getty Images)
By American Heart Association News

Taking medicine for a cold? 

Be mindful of your heart.

Flu has so far infected more than 6 million Americans this season, and winter colds are making their rounds. If you've been hit by either, you may be thinking about heading to your local pharmacy to relieve your aches, pains and congestion.

But before you do, you need to consider how some over-the-counter cold medicines may impact your heart.


"People with uncontrolled high blood pressure or heart disease should avoid taking oral decongestants," said Sondra DePalma, a physician assistant at the PinnacleHealth CardioVascular Institute at UPMC Pinnacle in Pennsylvania. "And for the general population or someone with low cardiovascular risk, they should use them with the guidance of a health care provider."

DePalma co-authored guidelines released in 2017 by the American Heart Association and American College of Cardiology focusing on the management of high blood pressure in adults. Both decongestants and non-steroidal anti-inflammatories (NSAIDs), found in many cold medicines, were listed as medications that could increase blood pressure.

Decongestants – like pseudoephedrine or phenylephrine – constrict blood vessels. They allow less fluid into your sinuses, "which dries you up," said Dr. Erin Michos, associate director of preventive cardiology at the Johns Hopkins Ciccarone Center for the Prevention of Heart Disease in Baltimore.

"But if you have high blood pressure or heart disease, the last thing you need is constricting blood vessels," she said. "It can exacerbate or worsen the condition."

The biggest concerns are for people who have had a heart attack or stroke, or have heart failure or uncontrolled high blood pressure, Michos said.

But research on NSAIDs suggests seemingly healthy people might also be at risk.

A 2017 study in the Journal of Infectious Diseases looked at nearly 10,000 people with respiratory infections who were hospitalized for heart attacks. Participants were 72 years old on average at the time of their heart attacks and many had cardiovascular risk factors, such as diabetes and high blood pressure. Researchers found that people who used NSAIDs while sick were more than three times as likely to have a heart attack within a week compared with the same time period about a year earlier when participants were neither sick nor taking an NSAID.

This may be due to the compound effect.

Merely having a cold or the flu strains the cardiovascular system. Fighting the illness raises the heart rate and causes inflammation. Meanwhile, NSAIDs – which carry a warning label about the increased risk for a heart attack or stroke – can cause problems by reducing the amount of sodium excreted through the urine, which increases fluid retention and raises blood pressure, DePalma said.

NSAIDs can be especially risky for people with heart disease or heart failure, Michos added. People who are sick should use both classes of medications – decongestants and NSAIDs – judiciously and understand the potential side effects.

For decongestants, blood pressure guidelines suggest using them for the shortest duration possible or using an alternative such as nasal saline or antihistamines to help with congestion. Decongestants shouldn't be taken longer than seven days before consulting with a health care provider, DePalma said.

NSAIDs taken as pills should be avoided when possible to avoid affecting blood pressure, guidelines advise. Rather, topical NSAIDs and acetaminophen are recommended alternatives.

"There are effective therapies that are less risky and definitely should be tried first," DePalma said. "If other over-the-counter medications are needed, use them cautiously. And if someone finds they are having problems like high blood pressure or other things like heart palpitations, they should talk with their health care provider."

If symptoms are mild or moderate, rest and drink plenty of fluids, Michos said. Preventing dehydration should help reduce body aches, clear mucous and may reduce the need for decongestants.

To help avoid getting sick in the first place, Michos recommends frequent hand-washing and lots of sleep, especially during cold and flu season. The Centers for Disease Control and Prevention recommends an annual flu vaccine for everyone 6 months and older, and the pneumonia vaccine for children under 2 and adults 65 and older.

If you have questions or comments about this story, please email editor@heart.org.
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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, January 27, 2019

Maintain What You Gain


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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The following is from the Stroke Connection Fall 2018 issue:
 http://strokeconnection.strokeassociation.org
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Maintain What You Gain


Over time, practically everyone — stroke survivor or not — loses some degree of function as they age. We cannot change the fact of that decline, but we can affect its rate. This is important for stroke survivors to remember, for without persistent effort on their part, they are likely to feel this decline more keenly.
A year or two out from therapy, it is not unusual for survivors to feel progress has stopped or that they’ve even lost some of their previous rehab gains. That would be a good time to get some more therapy. Think of this as “maintenance therapy,” and it is key to slowing the decline in function. For survivors on Medicare, it is actually part of their benefits.

Medicare Outpatient Therapy Cap

Until recently, and since 1997, there had been an annual cap on Medicare’s coverage of outpatient therapy. Fortunately, Congress enacted a permanent solution to the problematic cap on outpatient physical therapy services under Medicare Part B. Now, so long as therapy services are considered medically necessary, claims that go above the annually adjusted thresholds ($2,010 in 2018 for PT, SLP combined; $2,010 for OT) simply will require additional paperwork from the therapist to indicate to Medicare that the services are medically necessary and Medicare should pay for such services.
“Although there is a threshold, that is not a hard limit,” said Kara Gainer, director of Regulatory Affairs of the American Physical Therapy Association. “As long as the care is medically necessary and requires the skills of a therapist, it should be covered by Medicare. At the point at which services are no longer medically necessary, whether above or below the threshold, if the patient desires to continue to receive services, he or she will need to pay out-of-pocket,” Gainer said.

Medicare Coverage of Maintenance Therapy

It’s a myth that Medicare does not cover services to maintain or manage a beneficiary’s current condition when no functional improvement is possible. The 2013 Jimmo v. Sebelius court decision sought to dispel this misconception and provide clarifications to safeguard against unfair denials by Medicare contractors for skilled therapy services that aid in maintaining a patient’s current condition or to prevent or slow decline.
The CMS website summarizes the settlement this way: “Skilled therapy services are covered when an individualized assessment of the patient’s clinical condition demonstrates that the specialized judgment, knowledge, and skills of a qualified therapist (“skilled care”) are necessary for the performance of a safe and effective maintenance program. Such a maintenance program to maintain the patient’s current condition or to prevent or slow further deterioration is covered so long as the beneficiary requires skilled care for the safe and effective performance of the program.”
Criteria for maintenance therapy essentially hinge on whether the skills of a therapist are required to maintain or prevent or slow a further deterioration in function. “It isn’t limited to any particular condition or disease, and there are no time limits,” Gainer said. “As long as the services are medically necessary, Medicare should pay for those services, even if the patient has exceeded the threshold.”

Kara Gainer

Survivor Gerhard Endress has taken advantage of this benefit every year since his stroke. “His neurologist writes a prescription for Medicare benefits to the PT and OT and requests more treatments,” said Gillian Endress, Gerhard’s wife. “They never suggest it, but I ask for it when we have an appointment. We get around 18 sessions, which we use once a week till they run out, and then we do private sessions once a week at a fitness center.”

Private insurance

Most private insurers tend to have limits on the number of therapy visits. Each payer is different, so each policy needs to be closely examined. “Most insurers impose some form of an ‘improvement’ standard, and hence would not cover maintenance therapy,” Gainer said. “They want to see improvement in function; maintaining or preventing a decline in function generally is not covered. However, with the increased focus on reducing opioid use, we are starting to see payers start to consider whether to expand coverage of nonpharmacological treatments, like physical therapy.”

Paying cash

If a stroke survivor is a Medicare beneficiary and wants maintenance therapy that is medically necessary, he can’t pay cash. A claim must be submitted to Medicare. “However, if the Medicare beneficiary wants therapy that would not be considered medically necessary, a therapist would need to issue an Advance Beneficiary Notice (ABN) before providing items or services that the therapist believes or knows Medicare may not cover. This must be signed by the patient prior to the time of service. By signing the ABN, the patient is acknowledging they know they could be required to pay out-of-pocket. The therapist may then ask the patient to pay out-of-pocket. Regardless, the therapist must submit a claim to Medicare with a modifier, indicating an ABN is on file,” Gainer said. “By submitting a claim, the therapist is complying with the Mandatory Claims Submission rule while also indicating to Medicare the patient’s acknowledgement the services are not medically necessary and hence, aware that Medicare will not pay for the services.”

Senior man getting physical therapy

As for private insurers, each insurer has different policies. However, if care is not covered, then generally, patients could pay cash for such services. Patients should check their in- and out-of-network policies to ensure that they understand their responsibility when services are not covered.







Sunday, January 20, 2019

Finley the Service Dog: A Story of True Love


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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The following is from the Summer 2018 Stroke Connection 
web site: 
http://strokeconnection.strokeassociation.org

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Finley the Service Dog A Story 
of True Love


Finley, my Golden Retriever service dog, was rescued as a puppy, but ultimately, I was the one rescued by him. He is a hard worker, always ready to do his job, a constant AND faithful companion.
As the result of a massive hemorrhagic stroke in December 2008, I have visual field cuts and left side weakness with spasticity. Throughout my recovery, I used various assistive devices to help me with walking and mobility.
l began to diligently research and pursue getting a service dog in 2010. I discovered there are numerous service dog organizations throughout the country. Factors I considered when choosing an organization were: cost, location, reputation and my needs. The organization I chose was local, used rescued dogs and offered a lot of support to their clients. As a puppy, Finley and his litter mates were abandoned. Thankfully, they were rescued, and Finley began his journey to becoming a service dog.
The American with Disabilities Act (ADA) defines a service animal as “… a dog that has been individually trained to do work or perform tasks for an individual with a disability.” The task, or tasks, performed by the dog must be directly related to the person’s disability. A service dog must be individually trained for each person. It is also the responsibility of the handler (the person the dog is serving) to be in control of the dog. A service dog can be a valuable asset in the life of a stroke survivor, but a service dog requires a commitment on the owner’s part — regular exercise and meticulous grooming.
After completing an application, I was invited to meet with trainers to determine if a service dog would meet my particular needs. At this interview, the trainers got to know me and my specific needs and were able formulate a plan.
For most of Finley’s life, he has been working on learning how to be a good service dog — he started training when he was 1 year old, and I got him when he was 2. He needed to know how to behave in public. He needed to be able to focus on his jobs even with distractions such as other dogs, animals or food. He must be confident in performing the specific skills I need.
In February 2012, I went to final training. It was an intense 10 days, but we needed to work together fluidly. I had to learn to trust Finley, and he needed to learn to trust me. Processing new information is a challenge since my stroke, so there were some hurdles during team training. With the guidance and patience
Finley

of the staff, we completed it. However, we are never without support. To this day, the trainers are always a call, text or email away.



During team training, we practiced all our skills. Finley has been specifically trained to help me maintain my balance when walking. He helps me up and down the stairs. He assists me from a seated to a standing position. Finley retrieves items I drop and gives them to me. Although not formally trained to do this, Finley has learned to alert me to things on my left side. If I fall, there’s a way Finley can help me get back up. We also practiced going to public places such as malls, grocery stores, restaurants and movie theaters during team training.
Finley accompanies me in all places the public can go. We go to restaurants, nail salons, movie theaters, plays, shopping, fairs and use public transportation. At restaurants, Finley goes under the table. He always goes to my medical appointments — unless it’s a sterile environment such as an operating room. He also attends painting class and goes to church with me.
As his partner, I am responsible for Finley’s behavior. I wear a belt around my waist; attached is a leash that keeps Finley connected to me. He wears a harness with a handle. I hold onto the harness for stability when walking. He doesn’t wear his harness when he is “off duty.”
It is not all work and no play for Finley. He enjoys walking with me, but that’s still work. He waits by the door for his dog walker, who gives him a power walk. Sometimes, he simply runs in the yard at lightning speed with a toy.
Survivor Denice DeAntonio with her friend and service doc, Finley
A service dog is not for everyone. It may shed. It requires grooming. There are veterinary costs and food bills. Insurance does not cover the cost of service dogs. It is important to keep cost in mind when considering a service dog. My initial fees for Finley were $7,000, which included training.
It is important to remember a service dog is still a dog. Even though Finley has had excellent training, sometimes his inner dog comes out. Like the time I bought my husband a small cherry pie from the farmers market and placed it safely on my kitchen counter. My husband eventually went to eat his treat, but it had mysteriously vanished. We looked everywhere. As a last resort, we looked in Finley’s bed, and there was the empty pie tin, licked clean, its wrapper and a very satisfied dog.
There is no denying a service dog can add to the quality of your life. With Finley‘s support, I am able to walk up to three miles in one trip.
Having a stroke altered my life. One of the best gifts from my stroke is Finley. I walk more confidently and longer distances. I use the stairs with an ease I would have never imagined. Through him, I rediscovered an independence I thought I lost. Finley is now 7, and there will come a time he must retire. I will always have a special place in my heart for him, but I cannot imagine my life without my service dog.

Sunday, January 13, 2019

Service Animals


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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The following is from the Summer 2018 Stroke Connection 
web site: 
http://strokeconnection.strokeassociation.org
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Service Animals


We interviewed Mary Burch, Ph.D., director of the Good Canine Program at the American Kennel Club, and Michelle Williams, public relations coordinator at Canine Companions for Independence. Canine Companions for Independence is a national, non-profit organization that provides expertly-trained assistance dogs to children, adults and veterans free of charge.
SC: In what ways might a service animal help a stroke survivor?
Dr. Mary Burch
MB: People who have had strokes may have mobility issues, problems with memory and fine motor difficulties. Service dogs can be trained to help a person who has had a stroke by assisting with mobility — large dogs can steady the person who is wobbly; or the service dog can encourage the person to get up and walk — it’s hard to turn down a dog who wants to go outside. Service dogs can be trained to get things that have been dropped and bring them to the person, and they can be used as a part of a fine-motor physical rehab program. For example, the person with a stroke can squeeze an exercise ball, which is a boring task. They could also have a daily goal of brushing the dog, and this becomes functional rehab. Sometimes, after a stroke, the person tends to stay in the house. A service dog can provide companionship.
MW: Others may benefit from incorporating a trained service animal into therapeutic or rehabilitative exercises to help the individual meet their goals, whether they relate to motor control, speech, or ADLs. Individuals who use manual wheelchairs may also benefit from a service animal’s assistance in propelling the chair.
SC: How does someone go about getting a service animal?


Michelle Williams
MW: There are many organizations that provide service animals and interested parties can look at the Assistance Dogs International (ADI)website, where ADI-accredited organizations are listed. To apply for a service dog from Canine Companions for Independence, the first step is to learn more about our services and our assistance dogs on our website. Then, interested parties can submit a request for an application online to begin the application process.

SC: What are the potential barriers to getting a service animal?
MW: Sometimes, cost and wait times can be a barrier for people interested in receiving a service animal. Canine Companions candidates are placed on a waitlist ranging from a year to two years. Canine Companions provides its expertly-trained assistance dogs completely free of charge to people with disabilities. It is important for interested parties to carefully consider how they will meet the dog’s needs including feeding, toileting, exercise, grooming, training, covering the cost of veterinary care, and making the commitment to stay in regular contact with the organization for the duration of the placement.
MB: A common barrier is cost since the cost of a service dog can be from $10,000 to $30,000. Some agencies will advertise there is no charge for the dog. While this often means they don’t make the person with the disability pay for the dog, they may expect that there will be a fundraising campaign to raise the money that covers costs related to training and care. In cases where the dog is “free” to the service dog user, and costs are to be covered by community fundraisers or sponsorships, there is typically an agreement on the front end that specifies if the money must be paid before the dog is delivered.
Finding an available dog that is trained can be a problem. Also, if the person who has had a stroke is living alone or is spending a good part of the day alone, caring for a dog might be difficult.
Housing can also be an issue if the person lives in a no-pets apartment or a facility that cannot meet the needs of the dog, for example, no yard.
SC: Can emotional support animals be good for survivors, too?
MB: If the person who has had a stroke mainly needs company and a dog to spend time with, an emotional support animal might be fine. However, these dogs are not trained to perform specific tasks, so it should be understood that their primary job is to provide comfort and companionship.
MW: Some individuals may find that they would benefit from the relationship with an animal but do not need assistance in public spaces or through specific trained tasks. In this case, they may be interested in researching the options of getting a pet or emotional support animal. Canine Companions for Independence does not train or place emotional support animals; generally speaking, a good first step is to research local animal shelters or breed rescue programs.
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.

Sunday, January 6, 2019

Doing Good Work in Georgia


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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“ People look for retreats for themselves, in the country, by the coast, or in the hills . . . There is nowhere that a person can find a more peaceful and trouble-free retreat than in his own mind. . . . So constantly give yourself this retreat, and renew yourself. ”

— MARCUS AURELIUS

Marcus Aurelius was called the Philosopher. He was Roman emperor from 161 to 180. He ruled the Roman Empire with his adoptive brother, Lucius Verus, until Lucius' death in 169. He was the last of the rulers traditionally known as the Five Good Emperors. 

How he found out about our Retreat & Refresh Stroke Camps is beyond me!
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The following is from the December 2016 Strokeconnection website: http://strokeconnection.strokeassociation.org
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Doing Good Work in Georgia

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

If ever there were a stroke support group with a name that is right on, brainREconnect Inc. of Brunswick, Georgia, is it. In 2013 the group, which had been meeting for many years as Stroke Support of Southeast Georgia, morphed into brainREconnect to include individuals with traumatic brain injury (TBI), Parkinson’s, multiple sclerosis (MS) and primary progressive aphasia. Their goal is to address the isolation that stroke and brain impairment survivors and families experience.
In 2015, under executive director and speech language pathologist Royce Laidler, MA, CCC/SLP, the group became a nonprofit in order to create a meaningful and productive presence in the community. The Mission Statement says it well: “The brainREconnect Support Group is … dedicated to providing education, resources and continued therapy opportunities, many times after insurance benefits have ended. brainREconnect Inc. is devoted to those who are struggling with the aftereffects of stroke and brain impairment, as well as their families, caregivers and friends. The Support Group is committed to creating a nonintimidating, comfortable environment providing friendship, camaraderie and hope so that group members can re-engage with others and the community through facilitated interaction, promoting recovery after the ‘crisis time’ of their medical event.”
They welcome patients and caregivers of all ages, including a 3-year-old stroke survivor. “We live in the buckle of what is known as the Stroke Belt of the United States,” said Laidler. As the adult outpatient speech pathologist for their local hospital, Laidler is in a unique position to encourage survivors to participate in the group.
“As a speech pathologist, I recognized the importance of community for individuals suffering from stroke and brain impairment, as well as education and support for the caregivers,” she said.
She knows that isolation can lead to depression and regression. Laidler comes to her advocacy naturally — she has an adopted son with spastic quadriplegia and severe brain injury from a TBI.

Support Group Meetings

Every fourth Wednesday, the Brunswick campus of the Southeast Georgia Health System provides a room for monthly support group meetings with an average attendance of about 50 members. “Educational speakers have included doctors, dentists, therapists, psychologists and insurance specialists,” said Rhonda Hand, volunteer assistant director. A healthy lunch buffet is prepared each meeting by two devoted members and plenty of time is set aside for social interaction.

Group Activities

Chair yoga classes help participants learn to breathe better, practice relaxation techniques, and improve balance and muscle strength. There is also an hour-long weekly communication group for those with aphasia. The communication group focuses on interactive conversation, reading, writing and initiating socialization. All programs are provided at no cost to members or families.
Members also participate in a monthly pottery class at Glynn Visual Arts, jointly funded by Southeast Georgia Health System and Advance Rehabilitation. Jeanne Morrisey, a regular at pottery class, looks forward to going as it is “her favorite thing to do,” said her son, Jerry. “An important aspect of the class is the inclusion of family members which allows us to stay connected with her through an enjoyable activity.”


In the past year, brainREconnect Inc. sponsored two shrimp boat tours on the intercoastal waterway. Each included survivors, caregivers and family members as well as local therapists and their family members. “We enjoyed a Low Country boil right on the boat with freshly caught wild Georgia shrimp, and it was fascinating to listen to the biologist on board explain about the varied creatures brought up in the net,” Hand said. Other social events have included an annual Thanksgiving feast and Christmas lights trolley tour complete with Santa and hot chocolate and cookies catered at the historic Jekyll Island Club Hotel.
brainREconnect Inc. has also recently funded the participation of 10 survivors with severe aphasia to attend Brooks Rehabilitation Aphasia Center in nearby Jacksonville, Florida. There they received an extensive evaluation and 12 hours per week of therapy following the Life Participation Approach to Aphasia model for seven weeks.
The scholarships also include lunches and transportation for the 160-mile round trip. For a community education event, brainREconnect Inc. rented the historic Ritz Theatre in Brunswick and showed Aphasia, The Movie, a 40-minute film by aphasia survivor Carl McIntyre. McIntyre attended the screening and gave a humorous and inspiring presentation about his process of coming to terms with aphasia and making positive decisions about his new life.
“We are very proud of and inspired by the members in our group, survivors and caregivers alike,” Laidler said. “I think it is really this ‘grassroots effort’ that keeps us going and guides us to think ‘outside the box’ as to what we are able to provide that will best benefit our group. Our members share their successes, their experiences, resources and give of themselves with one another. All the members of our board of directors have firsthand, intimate knowledge of stroke issues, and our goal is to help our families live their best lives after stroke or any type of brain impairment.”
They are able to provide their programs because of the generosity and support of the local philanthropic community through foundations, grants and donations. That was the point of becoming a 501(c)(3), to be able to raise money more easily for their programs. Their volunteer board of directors invests many hours seeking funding, organizing events and coordinating with members.
“We are a family,” Laidler said. “We live it, understand it, and we care. We accept everyone who has experienced or cares about individuals with any type of stroke or brain impairment. We provide social, educational, and help with access to therapy and transportation. Anything that you would want for your own loved one, we attempt to provide to the best of our ability.”












Monday, December 31, 2018

Unsung Heroes


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

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

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

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

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

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

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

 OR

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

 OR

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

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

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

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

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

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

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

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

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