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.

When Stroke Affects the Temporal Lobe

www.strokecamp.org

www.unitedstrokealliance.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.
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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.”

“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...”

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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Celebrating American Stroke Month With a Love Story

www.unitedstrokealliance.org

www.strokecamp.org

May is 

American Stroke Month

The following is from the American Heart Association News:

https://news.heart.org/

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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 

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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.

The Juggling Caregiver

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Retreat & Refresh Stroke Camp
www.strokecamp.org

a division of United Stroke Alliance

www.unitedstrokealliance.org

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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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