Sunday, June 17, 2018

Sunday, June 10, 2018

How Can We Afford So Many Camps

http://www.unitedstrokealliance.org/
www.strokecamp.org












Show Me The Booster Box

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Some of you may be wondering how we can afford to host thirty-three camps every year all over the United States. A page out of our 2018 Spring Newsletter tells the story. Yes, there is a registration fee that is paid by each camper but that does not cover all the costs of our motel style accommodations, catered meals, arts, crafts and pampering materials, and the associated transportation costs of getting all these things to each camp's site. Our camps would not be possible without the following sponsorships, our annual fundraisers, and donations from supportive people like you.  We need all of you to help us help stroke survivors and their caregivers get a fun, relaxing weekend and a chance to feel normal at least once a year. The mission of Retreat & Refresh Stroke Camp is to improve the quality of life for stroke survivors, caregivers, and their families. This is accomplished through our weekend retreats, as well as community stroke education and awareness events for the public.
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THANK YOU DEAR SPONSORS, AND THOSE WHO DONATE. WITHOUT YOUR HELP WE WOULD NOT BE ABLE TO ENRICH THE LIVES OF OVER A THOUSAND SURVIVOR, CAREGIVER AND VOLUNTEER CAMPERS WHO COME TO US EACH YEAR. 

Sunday, June 3, 2018

Rehab After Stroke


www.strokecamp.org
http://www.unitedstrokealliance.org/













Show Me The Booster Box
If you are a member of a support group, you might want to pass on to your support group leader that we can provide a Booster Box that provides the support group leader a package of resources that will keep participants interested, engaged, and coming back for more, month after month. The comprehensive kit will provide the leader with discussion starters, activities, decorations, readings, and all the supplies you need to execute a meaningful group of 24 participants. Just click on the link under the Booster Box picture for more information.

If you do not belong to a support group but would like to, or would like to visit one to see what it is all about go here to find one in your area: 
Stroke Support Group Finder
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Copyright is owned or held by the American Heart Association, Inc., 
and all rights are reserved. 
Permission is granted, at no cost and without need for further request, 
to link to, quote, excerpt or reprint from these stories in any medium 
as long as no text is altered and proper attribution is made to 
the American Heart Association News. 

Sunday, May 27, 2018

Realistic Expectations

http://www.unitedstrokealliance.org/
www.strokecamp.org





http://www.unitedstrokealliance.org/program/booster-box











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David Wasielewski mentions stroke support groups in this following post. If you do not belong to a support group but would like to, or would like to visit one to see what it is all about go here to find one in your area: 
Stroke Support Group Finder

If you are a member of a support group, you might want to pass on to your support group leader that we can provide a Booster Box that provides the support group leader a package of resources that will keep participants interested, engaged, and coming back for more, month after month. The comprehensive kit will provide the leader with discussion starters, activities, decorations, readings, and all the supplies you need to execute a meaningful group of 24 participants. Just click on the link under the Booster Box picture above for more information.
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The following post is from the April StrokeNet newsletter: http://www.strokenetwork.org

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By David Wasielewski

Keeping it Real

As I meet new stroke survivors in support group and individual peer counseling sessions the subject inevitably turns to recovery and expectations for life after stroke. Rather than confront the uncomfortable subject head on I usually turn to my own experience. I explain that I am a number of years out (13 at the moment), and I deal with left side hemiplegia and chronic fatigue . In group I look to others to share their status, years out and condition. All are happy to share their experiences.

Some folks have little or no residual effects. At least none that are obvious to the casual observer. Others explain how they deal with their challenges as they move forward. Without directly addressing it, the new folks hopefully begin to realize that recovery and its aftermath may be lifelong situation. It is likely never complete. It often means a realization that the survivor might not be looking at ‘my life after a stroke’ but rather ‘my life with a stroke’.

But as every stroke is different, expectations for recovery differ as well. Everyone hopes for a full recovery. Unfortunately, everyone does not have that experience. So, how do we help survivors manage their expectations and the reality of their post stroke lives? Experience tells us that it is not our place to tell the survivor that they will not recover to a certain level. As we all know, anything is possible. Providing a discouraging prognosis can in itself be the reason a new survivor loses motivation, gives up or reacts badly.

I imagine that if my therapist or doctor had told me, early on that I would definitely not return to work, ski or play volleyball again much of my internal drive to recover would likely have been destroyed. Those were the expectations that kept me motivated in those early months. It is only as the survivor slowly realizes that life without those capabilities might not be so bad, that expectations give way to reality. Caregivers need to be sensitive to this process, offering support as these realities expose themselves and comfort as the realizations dawn.

And they do not all happen at once. It can take months or years for those expectations to wane. But as they do the survivor hopefully realizes that life without those capabilities is worthwhile. Attending support groups can be very helpful as experienced survivors help new folks through the realization process. Letting go of expectations can be easier as others help acknowledge and understand these challenges and transitions

I recently had lunch with a new survivor of a significant brainstem bleed. Risky surgery had alleviated some language and physical issues. He noted his anger when his neurologist suggested that his recovery might bring him to 85% of his pre-stroke capabilities. For a brief moment I wanted to remind him forcefully that he was lucky to be alive. But, having once been in a similar position myself I suggested that his neurologist might be mistaken and I looked forward to hearing of his progress.
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David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.

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Copyright ©April 2018
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.

Sunday, May 20, 2018

When Stroke Affects the Temporal Lobe


www.strokecamp.org
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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
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May is American Stroke Month
The following is from the Stoke Connection Newsletter, Summer of 2017: http://strokeconnection.strokeassociation.org
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When Stroke Affects the Temporal Lobe
BY JON CASWELL


The temporal lobe has several functions, mainly involved with memory, perception and language.
________________________________________________________________________________

The temporal lobe is one of four lobes that make up the cerebral cortex, the wrinkly hemispheres of the brain right beneath the skull. The temporal lobe (TL) is about the size of a fist and extends from the temples to just behind the ears on both sides about half way up the skull. Its blood supply comes from the middle and posterior cerebral arteries.

Dr. Chris Anderson
The TL has several functions, mainly involved with memory, perception and language. Being so close to the ears, the left and right TLs process what we hear. The TL is involved in attaching meaning to language. It plays a role in auditory, visual and long-term memory. The optic nerves pass through it on their way to the occipital lobes at the back of the brain, where vision is processed. The left TL includes Wernicke’s area, which spans the region between the temporal and parietal lobes, and plays a key role in speech comprehension.“The left and right temporal lobes are connected through the corpus callosum, which is the fiber tract that joins both hemispheres together,” said Chris Anderson, M.D., MMSc., associate director, Acute Stroke Service, Center for Genomic Medicine at Massachusetts General Hospital. “They don’t wrap around to join each other, but they certainly talk to each other a lot, through the corpus callosum and the thalamus as well.”
The TL’s main blood supply is from the middle cerebral artery. “That is a big artery so it supplies a lot of the temporal lobe but also a lot of the frontal lobe and even the parietal lobe,” said Anderson. Because of that, an ischemic stroke in the TL often involves injury to other parts of the brain. A hemorrhagic stroke is different. “Subarachnoid hemorrhages can happen that are pretty strikingly restricted to the temporal lobe. But also, intracranial and intracerebral hemorrhage can cause very specific lesions localized within the temporal lobe and cause deficits only within it.”
These are symptoms associated with temporal lobe strokes:
  • Difficulty recognizing common sounds or where they are coming from, like where to look for a dog that you hear barking;
  • Difficulty interpreting multiple sounds when they occur simultaneously, like understanding a person in a noisy environment;
  • Difficulty with depth perception, inability to see objects in a portion of visual space (in both eyes, like visual field cuts);
  • Difficulty comprehending speech;
  • Difficulty accessing old memories, difficulty remembering things that occurred long ago;
  • Personality changes, changes in mood or energy level;
  • Changes in sexual desire or sexual behavior.

Emotions and Behavior

Lesions in the TL can also affect the limbic system, which is a complicated network that both stimulates, as well as inhibits, different emotions. If the inside surface of the TL (known as the mesial TL) is damaged where it interacts with the limbic system, “it affects how survivors process their emotions and react to emotional stimuli,” Anderson said. “People with problems in their mesial temporal lobe can have fits of rage, inappropriate crying or laughing [pseudobulbar affect], even things like lassitude or apathy, meaning that they don’t react to anything. Typically, these things require damage to both temporal lobes but even with damage to one, people can notice differences in the way that they process emotions.”
Stroke affects each brain differently. “It is hard to predict what will happen. A stroke in the same location can cause one person to become angry and another person to be laissez-faire or happy-go-lucky or sort of flaccid,” Anderson said. The same is true for sexuality: “Some patients would become essentially asexual after one particular lesion in the temporal lobe while another may become hypersexual.” Anderson cautions that the frontal lobe is essentially responsible for how people react. “In other words, if your temporal lobe is making you relatively hypersexual but you have a very strong inhibitory frontal lobe, you may not act on those impulses.”

Vision

The TL plays an important role in processing both auditory and visual perception. Although vision is not processed in the TL, the optic nerves pass through it on their way to the occipital lobe. “Think of the temporal lobe as part of the highway that connects our eyes to the part of the brain that makes sense of what our eyes see,” Anderson said. A stroke in the TL can affect those impulses, called optic radiations, and create visual field cuts.

Communication

Language is processed in the TL, particularly in the left TL, where Wernicke’s area is located. “That is an area of the brain that’s important for helping us attach meanings to words that we hear, as well as produce new language,” Anderson said. “A stroke that affects the temporal lobe in Wernicke’s area will leave a person with aphasia. Overall, there’s much more likelihood of having language deficits after a temporal lobe stroke on the left than on the right.”

Memory

A stroke in the TL can also affect memory because of how close the TL is to the hippocampus. “We have two hippocampi, which are small regions on the very inside of the temporal lobe,” Anderson said. “They are responsible for laying down long-term memories. If both are lost, as sometimes happened in old-time epilepsy surgeries, then no new memories are created, and the person will meet you for the first time every day. If only one is injured by a stroke, the circuits may get scrambled a little bit, but typically the other hippocampus is still functioning fine, and it can pick up the slack as things go forward.”

Recovery

Anderson identified the most common deficits from TL strokes as visual field problems and language problems. Both of these respond well to therapy. With vision, occupational therapists generally focus on compensatory therapy, like learning scanning techniques if there is a field cut, because it is not possible to restore vision that is lost.
“In the language area, there’s a lot that can be done therapeutically through speech and language therapy to improve a survivor’s ability to understand as well as produce language, speech and writing,” he said. “It’s one of those things that if you don’t rehabilitate it, it takes much longer to come back and it doesn’t come back as strong. It doesn’t mean we can get people back to normal; most of the time we can’t. But we certainly can get them to as high a level of function as their bodies will let us.”
He relates this somewhat to the TL’s plasticity, but also to the fact that there are two of them. “I think a lot of the plasticity and a lot of the recovery you see after stroke in terms of language recovery has to do with the ability of the temporal lobe to wire to the other side,” he said. “There is substantial plasticity there for recovery, and patients who’ve had a stroke within the temporal lobe should feel like there is still a substantial potential for them to have a good recovery.”

Carissa Kauwell

Carissa Kauwell of Mount Joy, Pennsylvania, had a stroke the day after her 40TH birthday as the result of a carotid artery dissection compounded by two different clotting disorders. The ischemic stroke was described in her discharge documents as a “left frontal, temporal, parietal CVA,” and it left her with deficits in auditory perception and language comprehension, including aphasia.
Immediately post-stroke, her condition was described as moderate global aphasia. “In my records, it says that I refused to stick out my tongue or do this and that,” she said. “But I didn’t refuse, I just didn’t understand what they were saying. I could speak without any slur or anything like that, but I had a very difficult time finding words and expressing myself. I couldn’t read or really write. So, I definitely had global aphasia at the time.”
Today, three years after the stroke, she has made substantial recovery, but the remnants of her aphasia and auditory problems still dog her every day, especially at work. She is training for a new job with the postal service, and language comprehension is a challenge. “Probably half of what they’re telling me I can understand. If it’s something like technical instructions, questions, numbers, that type of thing is very difficult for me to understand,” she said. “If we’re just chit-chatting one-on-one, that’s easy. But if it’s over the phone, if someone has an accent, if they mumble, I have a hard time understanding.”





Numbers are a particular problem as is someone speaking fast: “It’s like there’s a disconnect in my brain. If I’m with my family or if I’m at a store with too much background noise, it’s almost impossible to understand someone speaking to me, because my brain hears everything around me, and I can’t focus on what the person is saying. It’s sensory overload.”
She never drives with the radio on because of that. “My brain just gets tired. If I’m driving after work, I just need quiet to decompress and focus on driving.”
She feels her personality has changed because other people have commented on that. A long time friend described her as acting like a child and an older person, too. Her aphasia is an ongoing challenge: “A lot of times when I deal with people and I don’t understand what’s being said, especially in a parent-child conference or job interviews, those types of professional instances, I feel embarrassed.”
Carissa had six weeks of speech therapy about six weeks after her stroke. “My therapist focused on my writing and made me read aloud,” she said. “I don’t think she really understood my deficits with auditory comprehension. Through my own research, I learned about the ‘auditory comprehension’ diagnosis. When I read it, I said, ‘So, that’s what it’s called.’”
Approaching the three-year anniversary of her stroke, she doesn’t feel that her auditory comprehension has really improved much while the rest of her issues have improved a lot. She would like to get some therapy for auditory comprehension.
In the past three years, she has progressed emotionally to a point of acceptance, even making peace with the inconvenience of warfarin, which treats her clotting disorders. “Part of me just feels like this is the way I’m going to be for the rest of my life and I’m just grateful to be alive and feel lucky I’ve gotten as good as I am compared to a lot of people that have strokes and aphasia. I’m able to express myself both verbally and through writing. But like I said, sometimes I feel embarrassed and wish I could get my brain back to what it was. But this is how it is, and you just have to deal with what you have and do the best that you can with it.
“When you’ve had a stroke, it’s almost like someone has died, and you have to go through the stages of grief and get to a point where you accept ‘This is the way I am now’ and move on. Over the past three years I’ve noticed that I still improve sometimes, but I’m okay with who I am now. I really am.”
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.
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Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to American Heart Association and American Heart Association News. See full terms of use.
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Sunday, May 13, 2018

Celebrating American Stroke Month With a Love Story







May is 
American Stroke Month

The following is from the American Heart Association News:

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He recognized she was in trouble and got her immediate care. Months later, she returned the favor.


One Friday night, Toni Sferlazzo went out with a friend in Clifton, New Jersey. Toni drove, which meant her pool cue was in the trunk.
A guy named Rich challenged her to a game. She went to her car, got the cue and … it hardly helped.
“I’m OK,” Toni said. “He’s fantastic.”
She got revenge by refusing to give Rich her phone number. Days later, she was still thinking about him; she didn’t even know his last name. So she returned the next Friday. Rich Guzman was there, carrying a new cue still in the wrapper.
“If you beat me, you can have this,” he said.
As Toni lined up a bank shot, Rich stood by her, guiding her. He told her she was going to make it – “Trust me,” he added – and she did. They’ve been there for each other ever since.
May 7 is their seventh anniversary, and it’s especially significant because of how much they’ve been there for each other over the past year.
Like last January, when Toni suffered a stroke.
And December, when Rich suffered a heart attack.
“We are each other’s angels,” she said.



Toni was at work, coordinating 11 drivers for a waste management company, when her right arm felt funny. It seemed like a flare-up of carpal tunnel syndrome, except her arm was more numb than tingly.
“I lifted my arm and it flopped on my desk like a falling brick,” she said.
Days later, a stroll across the office went haywire; she zigzagged. She blamed it on an insulin imbalance because of her Type 2 diabetes.
The next day, Rich was making dinner when he heard Toni say something that sounded slurred. He turned to look at her and said, “Your mouth – it’s drooping.”
Rich immediately put her into the car and navigated an ice storm to get to the hospital. In retrospect, he should’ve called an ambulance. Doing so would’ve meant saying into the phone a word he wasn’t ready for Toni to hear.
It came out at the ER when he said, “I think my wife is having a stroke.”
***
An ambulance also likely would’ve taken them to a hospital capable of handling stroke patients. While this facility was equipped for testing, it lacked an on-site neurologist. Instead, Toni had a telestroke consultation.
A neurologist elsewhere received the test results. Using a two-way video, the doctor asked Toni to raise her arms, then to smile, then to get out of the bed and walk. Between the exam and the tests, it was clear she’d suffered a stroke.
Further tests turned up good news and bad news: There was no clear source of what caused it.
This is known as a cryptogenic stroke, and it accounts for 25 to 30 percent of all strokes. She now takes aspirin and other medicines to help prevent a second stroke. Doctors later implanted a device to help monitor her heart’s electrical activity.
“Not knowing what caused my stroke is not comfortable,” she said. “But I feel very protected.”
Toni’s short-term memory isn’t as sharp as before. Once a proficient multi-tasker, she now jots things on sticky notes so she can focus on one thing at a time.
Her right hand remains weak. She’s a lefty, so it’s more of a frustration than an obstacle. However, there is one thing she misses.
“I can’t play pool anymore,” she said.
***
A long, difficult 2017 was finally ending. On the year’s final workday, Rich and some buddies went to celebrate.
Toni hadn’t hung out with that group in a while. Something told her this was a good time to join them.
As the evening wrapped up, Toni offered one of the women a ride home. They got into her car while Rich got into his truck.
Toni couldn’t move her car until Rich moved his truck. And he wasn’t moving.
“What he’s doing?” she grumbled.
Then Rich got out, clutching his chest. He opened the back door of Toni’s car, rolled in and said, “Take me to the hospital.”
An artery in Rich’s heart was 100 percent blocked.
Rich was rushed into the catheterization lab. A doctor inserted two stents to clear the blockage and prop open the artery.
“The doctor came out, gave me a big hug and said, `Your husband is going to be fine,’” she said.
***
Some people might’ve responded to back-to-back crises by wondering what will go wrong next. Toni and Rich are working to make sure nothing else goes wrong.
They’ve overhauled their lifestyle, starting with eating healthier. Their new Sunday morning routine is working out together. Many workdays Toni finds herself looking forward to putting on her workout gear and getting in a good sweat.
“God gave you one body to live in. Make it a happy home,” she said. “We can’t control everything, but we can do things to the best of our ability to not make life shorter.”



She’s also become a health advocate on social media, posting tips about lifestyle choices and advice on how to spot a stroke F.A.S.T. – if you see someone whose (f)ace is drooping, (a)rm is weak or (s)peech is slurred, it’s (t)ime to call 911. One friend recognized her husband’s stroke thanks to Toni’s tips, inspiring Toni to continue spreading her story and her message, especially in May, which is American Stroke Month.
“I have a new love for life,” she said. “I want to let people know that I had a stroke at 47, but my life’s not over.”
Her ordeal also brought a deeper affection for Rich.
“We’re getting healthier as a team,” she said. “We look out for each other, we support each other. We’re the dynamic duo.”
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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 
**********************************************************************************************************
Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to American Heart Association and American Heart Association News. See full terms of use.

Sunday, May 6, 2018

The Juggling Caregiver

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Retreat & Refresh Stroke Camp
www.strokecamp.org
a division of United Stroke Alliance
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The following was posted in the Stroke Network Newsletter August of 2017. 
http://www.strokenetwork.org
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The Juggling Caregiver
By Claudia R Warner

Keep your Cool!

July was hot. At times it seemed as if we were in August. August is normally hot and humid—but, we have had an abundance of that in July.

So, it’s important to keep your cool during the sizzling days. Since his stroke, Wes is especially sensitive to temperature changes. He just gets tired—and more tired. I think it has something to do with air pressure as well as humidity. Hydration is important during these days, and that’s a problem in our household. BS (before stroke) he would drink lots of water and iced tea during the summer. Well, that’s changed and I have to keep reminding (nagging?) him to drink, drink. I put beverages within easy reach---but he won’t drink them. Iced tea? He won’t touch it. Water? Maybe. Coffee, hot or cold? One cup. Milk? Only on cereal.

In doing research I discovered that after a stroke, this is a common factor. I try to simplify the reasons he needs to drink more to be more comfortable. Guess what? He doesn’t believe me! He thinks that I’m making up the facts that dehydration leads to confusion, forgetfulness, and many other bodily and mental problems. If you think that someone with Aphasia can’t express themselves adamantly, you should hear him!

To handle this problem, I make sure that he eats plenty of “juicy” fruits without mentioning that they have high water content! It works—somewhat. But he is getting some liquid into his system. Hooray for watermelon!!! He will drink Gatorade, but not lemonade. I do admit that he is better at drinking this summer than he has been in the past. He has noted that he feels much better when he keeps the beverage glass empty!

According to AARP, about 40 million family caregivers in the U.S. provide care valued at about $470 billion each year. This caregiving includes assisting with daily activities as well as medication and transportation. This allows people to live at home, preventing costly institutional care. This is so much better for the person as well as family members! And better for taxpayers, also! Caregiving involves a lot of time and energy, as you all know.

Thank goodness a couple of Senators are going to do something about this! Sens. Susan Collings (R-Maine) and Tammy Baldwin (D-Wisc.) have introduced the bipartisan Recognize, Assist, Include Support and Engage (RAISE) Family Caregivers Act, S 1028. It is waiting consideration by the full Senate. Let’s give these ladies kudos for doing this. AARP urges people to call their Senator at 844-259-9354 (toll-free) and urge them to support this important legislation.
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Editor Note:
The (RAISE) Family Caregivers Act, S 1028 has been passed and signed by the President as of January 2018.
Click here for a description: RAISE Family Caregivers Act
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Other important legislation is a bill called the OTC Hearing Aid Act. This would allow easier access to over the counter hearing assistance. Currently, the cost of prescription aids are what prohibits many people from getting the hearing assistance they need. Under the new law, Over the Counter Aids would be a more affordable hearing device and the higher quality prescription aids that are individualized for each user would still be available. Everyone has the right to hear well—and there are over the counter eyeglasses, flu medications, etc. So why not hearing aids?

The bill will be up for a vote soon, so while you are calling your senator about the RAISE Act, why not ask your senator to support the OTC Hearing AID ACT?
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Editor Note:
August 2017 the OTC Hearing AID ACT was passed and signed by the President. 
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Caregivers usually are so busy, we don’t realize that we are a viable part of legislation—we just need to speak up! It is easy to make the call and the person answering is usually very polite. They just need your input! Go for it!

"What dreadful hot weather we have!
It keeps me in a continual state of inelegance."
- Jane Austen


Claudia is the caregiver of her husband, Wes, who had a massive stroke in 2005. They both had retired and moved a few months before his stroke.

The stroke left Wes with acute aphasia, and affected his right side. His sense of humor and determination have brought him remarkable recovery. Formerly he taught high school and community college chemistry, physics and calculus.
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Copyright @August 2017
The Stroke Network, Inc.
P.O. Box 492 Abingdon, Maryland 21009
All rights reserved.
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Sunday, April 29, 2018

Becoming a More Flexible and Creative Caregiver

------------------------------------------------------------------------------------------------
Retreat & Refresh Stroke Camp
www.strokecamp.org
a division of United Stroke Alliance
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The following was originally posted late last year on the American Heart Association News web site at: news.heart.org

Stroke caregivers experience much the same as what a heart caregiver does. This article from AHA may give you stroke caregivers some useful suggestions for coping. 
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Becoming a More Flexible and Creative Family Caregiver 
By Julia L. Mayer, Psy.D. & Barry J. Jacobs, Psy.D

Theresa goes to bed each night with a long list of things to do on her mind. Because her husband, Frank, has congestive heart failure and is always weak and tired, she knows that she will have to dress him, fix his meals and set up his pills, as well as shop, clean, and pay bills. She has developed routines for getting all this done as efficiently as possible. But her life nowadays seems to her to be nothing but these routines. Each hour is filled with burdensome tasks. Each day has a stultifying sameness. Each morning she wakes with a sense of dread about doing it all again.

Routines have an important place in our lives. They keep us on track with our responsibilities, requiring little thought and feeling, especially when we ourselves are tired. But the very repetitiveness of them also robs our lives of spontaneity and zest. In the worst-case scenario, we could wind up functioning robotically--not thinking or feeling, but only acting on automatic pilot. Too much adherence to too much routine also makes it harder for family caregivers to adjust to evolving medical, social or financial circumstances. Theresa would do well to be less organized and efficient or, at the least, to review and refresh her routines regularly. She may have to think and feel more about Frank’s changing needs but, in the process, she will be enlivened, too.


How can family caregivers get out of the rut of routines? Here are some suggestions to shake things up a bit and hopefully get a bit of replenishment as a result:

Do one thing differently each day. Change your seat at the breakfast table. You’ll have a different view. Drink a different hot beverage in the morning. Switch the order in which you do something.

Breakfast before bathing instead of bathing before breakfast. Making a small change tends to increase your awareness of all that’s going on around you.

Introduce something new to your routine. You might turn on the radio during breakfast. Or open a window. Or put flowers on the table. You could read out loud from the newspaper. Put down different place mats or a table cloth. Whatever you add can be a small thing that doesn’t take a lot of planning and executing.

Add humor to your day. Plan to watch a funny movie together, or a comedy routine. Read a chapter out loud from a humorous book. Find ways to laugh together. It helps!

Add something creative to your day. Look at art, listen to music or do a small art project together. Make Christmas ornaments. Start to knit a scarf. Bake cookies. Start an herb garden on your kitchen window sill. You can do it with your loved one if possible or he/she can be present with you while you do it. Having a sense of accomplishment helps brighten your mood.

Do something social, even briefly. Talk to a neighbor. Call a friend or relative. Offer support to someone else. Go to services at your religious institution. When you engage with others, you will feel replenished and less isolated.

Get a change of scenery. Take a walk or go for a drive and pay attention to what’s around you. Look at the trees, homes and people. When you take yourself out of your routine, you remember that there’s a whole world out there. You may literally experience a breath of fresh air.

Sometimes it only takes a small departure from the daily drudgery to give us a sense of freedom, possibilities, and hope. We can all use more of that.
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Copyright is owned or held by the American Heart Association,Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, to link to, quote, excerpt or reprint from these stories in any medium as long as no text is altered and proper attribution is made to American Heart Association and American Heart Association News. See full terms of use.

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Thursday, April 19, 2018

Spring 2018 News Letter




















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Editor note: Please read to the end of this news letter for a very exciting opportunity to win a POLARIS RANGER 500.
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UNDERSTANDING OUR NAME CHANGE

It’s been just over two years since the decision was made to create an umbrella organization that would cover our growing list of services to the stroke community. That organization was named United Stroke Alliance. The name doesn’t change anything about Retreat & Refresh Stroke Camp, its name or logo. It doesn’t change Strike Out Stroke, its name, or logo. It now encompasses our newest addition, The Booster Box, and soon the expanding Youth Education on Stroke (YES) program. As we grew, the name change was necessary to be able to encompass all of our programs. Same services, same friendly staff, just a new name.
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MEDTRONIC GLOBAL CHAMPIONS ACCEPTING APPLICATIONS

Encourage patient-runners to apply and inspire others through their grit and determination

Medtronic Global Champions is a program that recognizes athletes from around the world who have persevered through life-changing health conditions and have returned to active life with the help of medical technology. These remarkable individuals and their stories of grit, determination and triumph serve as an inspiration to others with life altering health conditions. Up to 20 individuals will be selected for the 2018 Global Champions team. Selected honorees receive a paid entry for themselves and a running partner to the Medtronic Twin Cities Marathon or the Medtronic TC 10 Mile and a complimentary travel package that includes airfare, accommodations, and a host of VIP events.

Global Champion athletes must have a medical device, therapy, or procedure to treat heart disease, stroke, diabetes, cancer, chronic pain, spinal or neurological disorders, obesity, or gastrointestinal and urological disorders. There is no restriction on the manufacturer of these devices, therapies, or procedures. Certain conditions may apply, and applicants must certify that they have discussed race participation with their physician.

If you know someone who lives an active life and is benefiting from a medical device, procedure, or therapy, encourage them to apply to be a Medtronic Global Champion at www.medtronic.com/GlobalChampions.

Applications will be accepted through April 27, 2018.

See www.medtronic.com/globalchampions/officialrules for more details.


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New Stroke Camp Registration Software


We are happy to announce a new software program that will make registration easier as well as provide more detailed reports for our Stroke Camps. As with anything new, we expect there will be a kink or two for us to work on, it’s the nature of change. For those who prefer paper registration, we will gladly accommodate you, no worries.

Having trouble registering,? Just call Kerri Rae 309-688-5450.

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Can-a-Thon 2018

For those Sponsors that are interested in hosting a Can-a-Thon at their stroke camps again this year, Retreat & Refresh Stroke Camp will assist in coordinating that effort.



In 2017 we collected almost a ton of food that went to local food pantries, we hope to exceed that amount in 2018. Campers and volunteers will get details in their camp welcome packets.


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Peoria, Illinois Stroke Survivors 
and Caregivers, 
this opportunity is for you!
Stronger Than a Stroke


  Partnering With



United Stroke Alliance has partnered with Anytime Fitness Peoria to help stroke survivors and caregivers connect and thrive through fitness. Effective March 20, 2018, Anytime Fitness, North Peoria, is offering classes for stroke survivors and caregivers at NO COST. This weekly opportunity from 12-Noon—1:00 pm will be available free going forward. Anytime Fitness will be offering this weekly coaching and support led by their professional coaches/trainers. Come check out the possibilities.

If you want to become a member, they are offering an affordable membership rate for local survivors and caregivers: For more information on membership call Matt at 309-966-4217.



 Month-to-Month $25 

 One-Time Enrollment Fee $25

 Annual Club Enhancement Fee $25 


Anytime Fitness Peoria is located at 1320 W. Commerce Dr., Peoria, IL 61615, Off North Knoxville, behind Kroger and CVS.
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UPCOMING 2018 CAMPS

5/4—5/6 Camp Courageous; Monticello, IA | Sponsored by: Mercy Medical Center and University of Iowa Hospitals & Clinics

5/18—5/20 Chapel Rock Camp; Prescott, AZ | Sponsored by: Dignity Health

6/1—6/3 Purdue University; West Lafayette, IN | Sponsored by: Franciscan Health Foundation 


6/8—6/10 Salt Fork Lodge & Resort; Lore City, OH | Sponsored by: OhioHealth

6/8—6/10 Fellowship Deaconry Ministries; Basking Ridge, NJ | Sponsored by: Overlook Foundation and Atlantic Health Systems

6/15—6/17 Crestfield Conference Center; Slippery Rock, PA | Sponsored by: UPMC Rehabilitation and Stroke Institutes 


6/22—6/24 Warren Conference Center; Ashland, MA | Sponsored by: Brigham & Women’s Hospital

7/5—7/8 Lutheran Outdoor Ministries Center (Family Camp); Oregon, IL | Sponsored by: Retreat & Refresh Stroke Camp

7/13—7/15 Elmhurst College; Elmhurst, IL | Sponsored by: Amita Health Neurosciences Institute 


7/20—7/22 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, Illinois

Neurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth 


7/30—8/1 Chapel Rock Camp; Prescott, AZ | Sponsored by: Power of the Purse, Dignity Health, HealthSouth East Valley Rehabilitation Hospital

8/3—8/5 Pilgrim Park Camp; Princeton, IL | Sponsored by: Illinois Neurological Institute at OSF 


8/10—8/12 Highlands Retreat Center; Allenspark, CO | Sponsored by: Cheyenne Regional Medical Center

8/10—8/12 Michindoh Conference Center; Hillsdale, MI | Sponsored by: St. Vincent Mercy Medical Center**

8/24—8/26 Lutheran Outdoor Ministries Center; Oregon, IL | Sponsored by: Mercyhealth, IllinoisNeurological Institute, OSF Saint Anthony Medical Center, Swedish American, VanMatre HealthSouth 


8/24—8/26 Faholo Conference Center; Grass Lake, MI | Sponsored by: Henry Ford Health System, DeMaria 

8/24—8/26 Carol Joy Holling Center; Ashland, NE | Sponsored by: Lincoln Stroke Partnership, Bryan Health, Madonna Rehabilitation Hospitals, St. Elizabeth

9/7—9/9 Lake Junaluska Conference Center; Lake Junaluska, NC | Sponsored by: Mission Health 


9/7—9/9 Green Lake Conference Center; Green Lake, WI | Sponsored by: UW Health

9/7—9/9 Pilgrim Park Camp; Princeton, IL | Sponsored by: Retreat & Refresh Stroke Camp 


9/14—9/16 Airfield Conference Center; Wakefield, VA | Sponsored by: VCU Health

9/14—9/16 Broom Tree Retreat & Conference Center; Irene, SD | Sponsored by: Siouxland Stroke Support Network

9/21—9/23 Waycross Camp & Conference Center; Morgantown, IN | Sponsored by: Franciscan Health –Indianapolis/

Mooresville

9/28—9/30 Cohutta Springs Conference Center; Crandall, GA | Sponsored by: Erlanger Health System, HealthSouth, Siskin Hospital, Chiesi

10/5—10/7 Ceta Canyon Retreat Center; Happy, TX | Sponsored by: Medical Center Health System 


10/12—10/14 Rock Creek Resort; Red Lodge, MT | Sponsored by: St. Vincent Healthcare 
10/12—10/14 Pleasant Ridge Retreat Center; Marietta, SC | Sponsored by: Greenville Health System** 

10/12—10/14 Faholo Conference Center; Grass Lake, MI | Sponsored by: St. Joseph Mercy Oakland**

10/19—10/21 Rock Springs 4-H Center; Junction City, KS | Sponsored by: Kansas Family Stroke Foundation 


10/19—10/21 Echo Grove; Leonard, MI | Sponsored by: St. John’s Hospital & Medical Center 

10/26—10/28 YMCA of the Rockies; Estes Park, CO | Sponsored by: Good Samaritan Medical Center**

11/19—10/21 The Resort on Mt. Charleston; Mt. Charleston, NV | Sponsored by: St. Rose Dominican (Dignity Health)**

**Pending Sponsorship Confirmation


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2019 RETREAT & REFRESH STROKE CAMP CRUISE

Hope to see you for our Tropical Island Getaway theme!

Sail Dates: March 09-March 14, 2019


Is it adventure you seek, or a restful retreat from life on land? 

Royal Caribbean's Independence of the Seas® is home to an array of innovations that give you whatever type of vacation you desire. But this isn't just a cruise ship. It's an adventure that sails way ahead of the curve. Surfing. Rock climbing wall. Ice-skating. Mini-golf. Outdoor Movies. 

Come seek all this and more on Independence of the Seas - your biggest vacation yet. Ship’s registry: The Bahamas.

5 night Caribbean cruise Independence of the Seas

Itinerary: Ft. Lauderdale, Fla. - Cruising - Labadee, Haiti, Falmouth, Jamaica - Cruising - Ft. Lauderdale, Fla.

Cruise Only Pricing Per Person based on Double occupancy: 

Interior $459.00      Ocean $549.00     Balcony    $649.00  
   Category 4V           Category 8N           Category 6D                                                plus taxes and fees $97.91                             

A special message from your travel agent: We have confirmed a limited number of accessible cabins and regular cabins in the above categories. Other category cabins are available.  Triple and Quad rooms can be booked subject to availability.  Contact me soon to reserve your space.  Deposit $250.00 per person at confirmation.     

For more Information/Reserve contact: 


JOHANNA McCARTY, Outside Sales Agent  
ARROW TRAVEL   
P.O. Box 625, Charleston, Il. 61920      
Email: johanna.arrowtravel@gmail.com    
Phone: 217-532-2847(Available M-F 9AM-5PM) 


Arrow Travel is acting as a mere agent in accepting reservations for services not directly supplied by this agency.  Traveler assumes full responsibility for verifying documentation required for travel.  Arrow Travel and its employees are released from any claim arising from causes not within its control. 
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SURVIVOR STORY: Featuring Bill

BILL'S UNEXPLAINED STROKE STORY




All his life, Bill has been active. He spent 31 years in the Air Force working in air freight and passenger service before becoming a pastor and working other jobs. With five children and eight grandchildren, there are always activities and chores — from raking the leaves to fixing bicycles to playing a game of basketball. 

There were no signs of illness — aside from a little fatigue — 
before he collapsed one morning with a massive stroke. “No warning whatsoever,” Bill says. “We had been talking, he got up to go to the bathroom and I heard things falling,” remembers Donna,

Bill’s wife of 47 years. “I found him on the floor, unconscious. He couldn’t talk and couldn’t move.” 


ATRIAL FIBRILLATION AND STROKE

After Bill was stabilized at the hospital, his medical team set out to determine what caused the stroke. “One of the main etiologies for stroke is atrial fibrillation,” says Gary Boliek, M.D., a cardiologist at Baptist Health in Lexington, KY. “Patients are sometimes symptomatic in that they may feel their heart racing irregularly. But many times, atrial fibrillation is silent.” 


Atrial fibrillation (AFib) is a common condition in which the upper chambers of the heart, or atria, beat very fast and irregularly so the heart can’t pump blood effectively to the rest of the body. AFib increases the risk of stroke more than 5 times,1 but often goes undetected since it can happen infrequently or without symptoms. 

A heart monitor could determine if Bill had a heart arrhythmia. There are many types of heart monitors and they vary by how long they can be used and how information is captured. One type of monitor captures heart activity for up to two days. Another can be worn for up to 30 days. 

A large study showed that for many patients who’ve experienced an unexplained stroke, known as a cryptogenic stroke, it could take more than 80 days for AFib to appear because the episodes happen infrequently, often without symptoms.2

REVEAL LINQ ICM

Bill’s doctor decided on the Reveal LINQ Insertable Cardiac Monitoring (ICM) System, a heart monitor that watches for
problems 24 hours a day, seven days a week, for up to three years. 


A miniaturized monitor, it is one-third the size of a AAA battery and is implanted under the skin. Data from the device is automatically sent to the doctor. It took eight months before Bill experienced another episode, and the Reveal LINQ ICM detected atrial fibrillation. 

With this information, Bill’s doctor prescribed blood thinners to help prevent AFib from causing another stroke. “If we had not implanted the continuous monitor, we likely would not have detected his atrial fibrillation,” says Curtis Given, M.D., a neurosurgeon at Baptist Health. “Without the [monitor], we might have sent him home on aspirin, for example, and that would not have protected him from future stroke.”

CELEBRATING LIFE

Since his stroke, Bill has celebrated his 80th birthday and is back to helping Donna around the house with vacuuming, unloading the dishwasher, doing laundry, raking the yard and fixing household items. “He still does most everything he ever did, sometimes more,” says Donna. 
She also knows the importance of a rapid response. “Whether you know it’s a stroke or not, get help fast,” she says. 

Bill is happy to be back to his old self. “I just couldn’t imagine not doing the things I’ve always done, you know?” he says. “Now, I can pretty much do what I want to do or what I have to do.”

To learn more about cardiac monitoring for unexplained stroke, visit Medtronic.com/heartmonitors.

This story reflects one person's experience. Not every person will receive the same results. Talk to your doctor about your treatment options.


1 Wolf PA, Abbott RD, Kannel WB. Atrial fibrillation as an independent risk factor for stroke. The Framingham Study. Stroke. August 1991;22

(8):983-988.

2 Sanna T, Diener HC. Passman RS. Et al. Cryptogenic Stroke and Underlying Atrial Fibrillation (CRYSTAL AF). N Engl J Med. June 26, 2014;370 (26):2478-2486.


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NOTES FROM THE CEO
Larry Schaer | CEO United Stroke Alliance

Over the last 10 years I have had the unique pleasure in meeting great stroke survivors, caregivers, family members, volunteers, and sponsors all over the country. In come cases, it is meeting with interested people who are attracted to the idea of doing a Stroke Camp, a Strike Out Stroke event, or our Youth Education on Stroke program. 


I would like to take this opportunity to introduce you to the folks in North East Kansas. It began when one Topeka stroke survivor participated in the Lincoln, NE stroke camp and wanted to have one in Topeka, KS. I met with the folks from Kansas Rehabilitation Hospital and presented the idea. 


“After we first met, the thought of raising $25,000 seemed like trying to climb Mount Everest. I was inspired by the vision of changing the lives of stroke survivors and caregivers and being a part of their journey,” said Lisa Rundell, Director of Therapy Operations at Kansas Rehabilitation Hospital. Although everyone was excited about the idea, it seemed like a big challenge to find the funds to sponsor a camp. 

After some discussion the first step was to obtain funding through their first Trivia Night held in Topeka, KS. It provided a significant portion of the sponsorship fee for their first Stroke Camp. With additional local sponsors, the first North East Kansas Stroke Camp was conducted in October 2017. From corny skits to Saturday night karaoke, participants left with a feeling of renewal and inspiration to do it again. 

“Having a network of survivors, caregivers, and volunteers that have had a chance to be impacted by the camp firsthand has significantly increased the enthusiasm around continued growth”, according to Barry Muninger, Director of Marketing Operations. 

In February, this group organized their 2nd annual Trivia Night for additional stroke awareness programs. In addition, Youth Education on Stroke programs are being planned for the spring as well as an established website and foundation. In a matter of months, this group is changing the landscape of stroke awareness and support for stroke survivors, caregivers and family members. 

As a result of one stroke survivor wanting a local camp in Topeka, the community is now seeing value of people working together to improve the quality of life. 

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NATIONAL BOARD OF DIRECTORS –MARK BELK
Introduction | Getting to know your Board Of Directors



United Stroke Alliance would like to introduce one of our Board of Directors, Mark Belk. Our first contact with Mark was in 2014 when he and his wife, Shannon, a stroke survivor, participated in a Retreat & Refresh Stroke Camp in Green Lake, WI. From that point our relationship has continuously grown from 
campers to a priceless friendship. 

The following year Mark, Shannon, and Joe Romenesko, another stroke survivor, organized and supported the first NE Wisconsin stroke camp. In 2016, Mark and Shannon moved to Omaha, NE where Shannon continues her rehabilitation at the new Madonna Rehabilitation facility.

In the spring of 2017, Mark was elected to the National Board of Directors of United Stroke Alliance. Not only does Mark bring the perspective of a caregiver of a stroke survivor, he has a rich background in information technology, sales, marketing, and general management. His proven leadership and strategic thinking has been demonstrated through his career in working with major companies across the country.

His 25+ year career path has included Vice President- IT for Oshkosh Corporation, Vice President/Global Enterprise Technology and Project Management for Zimmer, Inc, Vice President/Global Information Services for Avnet, Inc., Vice President and
Business Information Officer for Armour Eckrich Meats, Inc; Vice President/Enterprise Center of Expertise for ConAgra Foods,
Inc., as well as other corporations. Mark holds a BS degree in Business (Marketing) and a Master’s Degree in Business Administration (MBA) from Radford University in Radford, Virginia.

United Stroke Alliance is privileged to have Mark’s business expertise and personal experience as a caregiver on the Board of Directors. We look forward to working with Mark in developing and growing United Stroke Alliance into a long term global organization providing community stroke awareness and supporting stroke survivors, caregivers, and their families.

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POLARIS RANGER 500 RAFFLE (VALUE $9,000)

Benefitting United Stroke Alliance

PROVIDED BY LEONE POLARIS, PERU, IL 

ALTERNATE PRIZE ($8,000 CASH)

Color may vary
Tickets: $100 each

Drawing to be held when the sale of 200 tickets is complete. Do not have to be present to win.

Raffle License # R-57-18 Peoria County Illinois
To purchase your ticket, please call 309-688-5450


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