***************************************************************** The following is from the March 2020 digital edition of Stroke Connection magazine. Thrie web site can be accessed here:http://strokeconnection.strokeassociation.org/ ***************************************************************** Stroke Family Warmline
The Stroke Family Warmline connects stroke survivors and their families with an American Stroke Association team member who can provide support, helpful information or just a listening ear.
The trained specialists in the ASA’s National Service Center can answer your questions about stroke. Call us 8 a.m.-5 p.m. CT Monday-Friday at 1-888-4-STROKE (1-888-478-7653).
Click the link below to hear Janet Scott describe her role as a family caregiver and Stroke Family Warmline specialist.
A benefit of high-tech AAC is capacity. A physical notebook can only hold so many pictures, but a smartphone or tablet can hold thousands.
“There are several mobile applications that combine the use of photographs, writing, drawing and text to allow the individual with aphasia to use those to support their communication,” McKelvey said. “It can be programmed with a greeting for your daily coffee order. Sometimes, we use what we call a floor holder that introduces the individual using AAC and says, ‘I’m using this communication device to help because it’s difficult for me to get my words out, but I can understand what you’re saying.’ It really depends on the individual needs of the person.”
Some patients prefer the high-tech, and both experts surmised that this reflects the person’s comfort with technology before the stroke. “Our folks who are in their 80s, 90s and sometimes 70s just prefer to use low-tech strategies,” McKelvey said. “But this next generation may be different. They are used to using technology all the time and may want to use … this type of technology for communication as they’re so familiar with it.”
Dr. Miechelle McKelvey
A little over a decade ago, someone carrying around a device all the time might have seemed odd. “With the proliferation of tablets, there is less stigma involved in somebody using or carrying around a tablet that they use for various purposes because lots of people do it,” Gutmann said. “Even dedicated devices these days maybe have sort of a tablet-looking- type device or a laptop type of device, so they may not be as different looking as they may have been in the past.”
High-tech allows for more complexity in communication. “In most high-tech systems, you can prepare and save messages and have them ready to go,” Gutmann said. “You could also communicate across space with something that has a voice output, so you could talk on the phone, whereas for the most part, low-tech options are very limited in that respect.”
Complexity can be a challenge with high-tech AAC — ease of navigation, ease of organization and customization are important. If survivors can’t make it their own, it will never be part of them. “It has to be organized and personalized for the individual who has aphasia. It really has to make sense for the user,” McKelvey said. “It can be a challenge to figure out how it is going to be most facilitative. A lot of trials and feedback about ease of use are necessary. When we design something for a patient, they have to take it out and use it. Then we come back together and talk about what worked and what didn’t. How can we make this better?”
Gutmann emphasized that programming is time intensive. “It can be fabulously successful, but it can also fall flat on its face if you don’t have buy-in from the person with aphasia and their most important conversation partners,” she said. “Also, there are so many considerations for systems. You have to consider if the person can navigate it. Can they use a smartphone? People who were tech users before they had aphasia may be more inclined to embrace this as part of their AAC. People who weren’t users of tech before they had aphasia may find themselves less inclined to embrace this as part of their intervention.”
High-tech AAC requires a battery or an electrical outlet. And, as amazing as it is, technology always has the potential not to work. “I never have an individual communicate using just one method because I don’t communicate using just one method, so I don’t expect my patients to,” McKelvey said. “There has to be a low-tech way for them to communicate when their high technology isn’t available to them for whatever reason — it doesn’t get plugged in, it doesn’t work that day, they left it in the car, whatever.”
If something does go wrong with a mobile tablet, what then? “Who’s going to be this person’s tech support?” Gutmann asked. “Is it going to be their spouse, their child, their best friend, their grandchild? A dedicated speech-generating device is going to come with tech support from the manufacturer. But when you buy a commercially available tablet and an app, who’s responsible for that? If something goes wrong, do you take it back to the place where you got the tablet? Maybe it’s not a tablet issue; maybe it’s a problem in the app. Maybe it needs updating. Maybe there’s a problem with the device. It’s harder to disentangle those things.”
Neither low-tech nor high-tech AAC is better than the other. But it’s not hard to imagine that using tech that actually speaks for you can make a different impression. “You might be perceived as smarter, more able, more capable,” Gutmann said. But not all people will relate to an artificial voice coming from a device. And there are situations that may require low-tech AAC. “What happens when the power goes out, or you need to communicate in the shower or bath? If you need help with those type of tasks, you can’t be taking a tablet or a dedicated device into the bath or the shower.”
Sometimes it boils down to simplicity. “Honestly, a lot of my patients just prefer the low-tech because they can write or draw or use the word list, and it’s just easier for them to communicate using those methods,” McKelvey said. “It really depends on how efficiently they can locate what they want to say when they need to say it. Personalizing the organization and vocabulary within the AAC system can lead to successful communication.”
Costs
“Cost can be a barrier for some individuals — if you’re looking at a particularly sophisticated speech-generating device, up to $7,000,” said McKelvey. “Speech-generating devices are considered essential durable medical equipment by Medicare and Medicaid, but there has to be an evaluation from a speech therapist.” Getting Medicare or Medicaid to cover the cost requires paperwork and the process for approval can take some time. McKelvey tells us that there are programs and organizations that may offer equipment on loan. This gives individuals with aphasia a chance to try out the technology first. “If we’re talking about an app on a phone, those can be anywhere from $5 to $250 plus the cost of the device,” she said.
The high and low tech of augmentative and alternative communication for aphasia
BY JON CASWELL
After stroke, community is important for recovery, and communication is key. “I have learned from my patients that the most important thing for them is communication,” said Miechelle McKelvey, Ph.D., CCC/SLP and professor and department chair in the communication disorders department at the University of Nebraska-Kearney. “I’ve had so many spouses of stroke survivors tell me: ‘I used to think the worst thing would be if he or she couldn’t walk. But I never really thought about them not being able to communicate.’ It’s how we connect with our loved ones and our community, even our pets. It’s how we connect with the world.”
Speech language pathologists (SLPs) are all for anything that supports survivors’ ability to connect with their world and those in it. “My goal is that a person should be able to communicate in any environment they step into, about any topic they choose, and with any communication partner,” McKelvey said.
Augmentative and alternative communication (AAC) methods help make that happen. According to the American Speech Language and Hearing Association:
AAC includes all of the ways we share our ideas and feelings without talking. We all use forms of AAC every day. You use AAC when you use facial expressions or gestures instead of talking. You use AAC when you write a note and pass it to a friend or co-worker. We may not realize how often we communicate without talking.
People with severe speech or language problems may need AAC to help them communicate. Some may use it all of the time. Others may say some words but use AAC for longer sentences or with people they don’t know well. AAC can help in school, at work and when talking with friends and family.
Types of AAC
AAC methods generally fall into two categories — high tech and low tech.
Low-tech AAC can be as simple as a notepad.Hightech AAC encompasses electronic and computerized devices.
Low-tech AAC can be as simple as a notepad. One of McKelvey’s colleagues developed a small pocket calendar that, instead of dates, has word lists, sentences, phrases, topics or even pictures that a person could need to communicate. “Other types of low-tech or no-tech communication would be as simple as gestures or facial expressions,” McKelvey said. “Anything that a person would use to either support what they are communicating or that a communication partner would use to support someone with aphasia’s ability to understand what’s being communicated to them.”
“Low-tech AAC can include anything from actual pictures or photographs to a communication board,” said Michelle Gutmann, Ph.D., CCC-SLP and clinical professor in Speech, Language, & Hearing Sciences at Purdue University. “You can either develop them and customize them, or there are some prefabricated ones on the market, from an emoticon [images that indicate emotions] rating scale, to something called a boogie board that is like a magic slate that can be written on but easily erased. Low-tech pretty much encompasses anything that is non-electronic.”
High-tech AAC encompasses electronic and computerized devices. “I think we have more options now because of two things that happened in terms of the research and the technology,” Gutmann said. “Starting in 2006, researchers started talking about ‘Visual Scene Displays.’ Visual Scene Displays are highly contextualized, personally meaningful and relevant pictures on a communication device that are used to help people with aphasia communicate. Then, there was the proliferation of mobile tablets that readily support the use of pictures and the many apps that support communication.”
Different mobile apps support communication in different ways. “Some applications have sentences and phrases that speak when the person presses a button,” McKelvey said. Some apps are as simple as a whiteboard surface that can be drawn or written on with a finger or stylus or an onscreen or peripheral keyboard can be helpful.
In addition to mobile apps, high-tech AAC also includes dedicated speech-generating devices. The sole purpose of these devices is to support communication, whereas a tablet supporting AAC apps also runs apps for other purposes.
Tobii Dynavox is an example of such a device. “A dedicated speech device would have presets and access to vocabulary,” McKelvey said. “Then it has to be personalized for the individual’s needs. Some apps can be customized but the features of the apps need to meet the needs of the user. The individuals with aphasia must be able to navigate through the app and locate what they want to say efficiently during the conversation. This can be a challenge for individuals with aphasia. It is important to have an AAC evaluation with an SLP to ensure this match between the needs and abilities of the person with aphasia and the features of the AAC system be it low-tech or high-tech.”
Both experts were clear that dedicated speech-generating devices are not necessarily better or worse than low-tech communication displays, notebooks and photographs. All can be useful for people with aphasia. “And every high-tech device needs a low-tech backup, something to use when the high-tech can’t be used,” Gutmann said. “Some people prefer low-tech because it requires whomever they’re talking with to be face-to-face with them, engaged with them right there and really involved in the communication. On the other hand, a high-tech system could allow somebody to prepare a message in advance. For example, going to a family reunion prepared to ask people how they’re doing and updating them about themselves.”
Survivor Deborah Nealon hikes Paintbrush Divide in the Grand Teton range.
This slice of my life has been offered for public consumption before; only now I serve it as an appetizer, not the main course.
At 5:30, my morning began as normal. It was the start of Memorial Day weekend 2005. It was as normal as any other morning except I noticed my right hand was not helping my left to shampoo my hair. It felt weak and tingly. As I dressed, my right hand did not participate again. Although my hand appeared fine, it was acting as if it were an inflated latex glove, exaggerated and numb.
A couple of hours later, I sat in a diner wanting breakfast when another unusual event occurred. A waitress approached the table to take my order, and I could not express that I wanted bacon alongside my scrambled eggs unless I used the word “with” because I was unable to say the word “and.” “Wow, I need breakfast,” I thought. I ate as a lefty because the fork anchored my right hand to the table. After eating, I thought I was ready to get on with the day, so I paid the tab, left the diner and headed for my car. But I only made it to the curb.
I caught a glimpse of someone’s watch as I arrived at the emergency room. It was almost 1:00 p.m. My recollection of my transport to the hospital is a blur. When I was in the emergency room, I got progressively worse and started to lose more and more of my abilities. I became paralyzed on my right side. I was frightened, not knowing what to expect.
Once the hospital paperwork was processed, the staff assessed me, disrobed me and prepared me for an MRI. I couldn’t even sign my name, and while I may not have been able to ambulate or speak well, I could hear just fine. The MRI machine was loud and frightening. When the noise stopped, a nurse took me back to my curtained cubicle on a gurney via a bright, busy hallway. I lay there acutely aware of every sound, waiting in a sub-comfortable temperature for the results.
As time ticked by, I grew anxious and bored. Then I realized I was learning a lot about my surroundings without physical exploration. The gruff voice coming from behind the curtain on the right was that of a woman. The smell of cigarettes permeated that side of the room, and I pictured a 40-plus-year smoker as she requested some water. There was snoring behind the left-side curtain, so I thought that must be a man.
Just as I began to relax, a physician yanked open my cubicle curtain to inform me that I had had a stroke. What? Did he see my D.O.B.? I was only 35 years old. My knowledge of stroke was very limited. I think the common perception is that stroke happens to elderly people — at least that was my perception and I’m even in health care.
The doctor went on to explain what caused my stroke — hyperthyroidism caused by Graves’ disease. This condition made my heart beat fast and irregular which allowed a clot to form which blocked an artery restricting the oxygen to my brain. I have since learned about Graves’ disease and how to control it. Graves’ disease can go dormant. That’s where I am now — off medication and aware of the signs and symptoms of Graves’ disease. (See sidebar About Graves’ Disease.) I do blood work periodically just to make sure it’s in check.
After I was admitted to the hospital, I would learn that it is not shocking for a person to have a stroke at 35. Even fetuses still in the womb have been known to have strokes. So, strokes occurring in young people are not unique. What is unique is the way a stroke affects each person. Some people barely notice that they’ve had a stroke, while others are devastated.
The first night in the hospital, I felt alone after everyone went home. I remember being afraid to go to sleep because I wasn’t sure if I would wake up or what other deficits I would have when I woke up the next morning.
My stroke made the right side of my body inept and rendered me verbally useless. Since I’m right-handed, my attempts at communication were exhausting and ended in failure. Any letters I tried to scribe with my left hand were not legible. The seal-like sounds that came from my mouth were indecipherable, too. Meanwhile, my brain was secretly hard at work reorganizing to restore my function.
Eleanor Roosevelt said, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
Six days after my stroke, I was released from the hospital. I had recovered quickly and was able to walk, talk and write. I felt like a butterfly freshly emerged from a cocoon. With eternal gratitude, I immediately began to create a whole new life.
I was back at work in health care in less than two weeks, because when you have financial need, you can’t wait to go back to work. I had to be picked up and dropped off before being cleared to drive six weeks later. They said my recovery was most likely attributable to my age and being in good health.
A year after my stroke, I taught my youngest daughter how to drive. I watched with pride as she became a college freshman. It was traumatic for her to witness my stroke, but that’s what gives you motivation to keep going. You want to give your children comfort and security and let them know they can depend on you.
I took up running, which helped me with my gait. It was awkward at first, but I would go on to do three marathons. The first one was in 2009, four years after my stroke. I have also learned how to mountain bike and even had a brief opportunity to showcase my skills on a local television show about women taking up mountain biking. Surprisingly, I discovered I love mountaineering despite being afraid of heights before. In the past several years, I have climbed many mountains.
I went on to complete a graduate degree in health administration. At the time of my stroke, my specialty was podiatry. Today, it is vascular. So now I’m closer to patients who have had strokes.
So much has happened since my stroke more than a decade ago that has helped me put it into perspective. In the beginning when I would introduce myself, it was almost always, “Hi, I’m Deborah Nealon and I had a stroke.” because it was so much at the forefront of my mind. But as time passed, my stroke became a small part of my life because I feel I have overcome most of the deficits and have also overcome the fear and emotions that go with such a traumatic event.
I now understand my stroke is what started this story, but it is the beginning portion, not the main course. It no longer defines me. However, I acknowledge that the healthy and satisfying life I’m now enjoying would not have begun without it.
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.
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.
***************************************************************** For cell phones, holding in landscape position (long side toward your lap), will give the best presentation. ***************************************************************** Recently I had a medical issue. Well it was actually only the flu, but medical issue sounds more dramatic. Anyway, because of that medical issue, I was unable to attend the August Rockford, Illinois camp.
Hi, I'm Cheri. I'm here to help.
How do I have to get Chuck out of trouble this time?
One of our very active volunteers, Cheri, who was not scheduled for this camp, gave up a vacation day from her job to perform my Friday through Sunday camp duties.
I will be eternally grateful for her help. Cheri is also the coordinator and pit boss for the camp's Thursday night Bingo volunteers. Every Thursday the Tazewell Bingo Center allows us to assist them for the night which helps us raise funds to support our nation wide camps. Tazewell Bingo Center gives back to the community by supporting 501(c)(3) not-for-profit charities. We are one of many charities taking advantage of this opportunity. Tazewell Bingo Center's mission is to support such nonprofits, thereby allowing charity services to remain in Central Illinois. Cheri was assigned to a few of the same camps I was so I thought I would show some of the pictures I took of her while there.
She also takes pictures at the camp and performa other duties such as assisting stroke survivors with crafts and other events we provide.
One of the sponsoring hospital volunteer nurses, Kim, is here assisting Cheri with craft materials.
The camp Cheri and I staffed in June had a really nice swimming pool and the weather was perfect for swimming.
Many of the stroke survivors took advantage of that opportunity, and Cheri, with other volunteers, joined them to ensure their comfort and safety. Here she is with volunteers Lori, Amanda and Georgia. On Friday nights we always try to have a marshmallow roast outdoors, and make what are called S'mores. S'mores are Graham Crackers sandwiches with a roasted marshmallow for the meat. Very sweet and very good. If you have attended any camp or cook-out you probably know what I'm talking about. The recipe dates back to the 1920's, so, if you haven't heard of them until now, I have finally contributed something wonderful to society . This particular Friday night it rained so no campfire was possible, but does that stop us? No, no. We just move indoors and ignore the ole meany weather.
Ha, HA! Canned heat! Yep, we try to think of everything to keep the camp fun going. Michelle and Amanda will not be daunted by rainy weather either. Would you believe that a stroke survivor, unable to function on one whole side of their body plus not able to communicate fluently, would be able to zip down a zip-line...ALONE? Well they can and they do, and you can't imagine how powerful that simple event makes them feel. Guess who assists them to make that happen?
This is at the Illinois camp. We staff over 30 camps every year all over the U.S. and we are still growing. Whenever we see a zip-line at any of our camp grounds you can bet there will be a stroke survivor on it before the weekend is over. But back to Cheri. If anyone deserves an award for volunteer services it would be Cheri and it should be an award as famous as the movie's Oscar. Well there is one but guess what?
Chuck, Can we put this down now? Chuck?
Amanda, lets put this thing down.
20 snapshots are enough.
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.
Recently I had a medical issue. Well it was actually only the flu, but medical issue sounds more dramatic. Anyway, because of that medical issue, I was unable to attend the August Rockford, Illinois camp.
Hi, I'm Cheri. I'm here to help.
How do I have to get Chuck out of trouble this time?
One of our very active volunteers, Cheri, who was not scheduled for this camp, gave up a vacation day from her job to perform my Friday through Sunday camp duties.
I will be eternally grateful for her help.
Cheri is also the coordinator and pit boss for the camp's Thursday night Bingo volunteers. Every Thursday the Tazewell Bingo Center allows us to assist them for the night which helps us raise funds to support our nation wide camps.
Tazewell Bingo Center gives back to the community by supporting 501(c)(3) not-for-profit charities. We are one of many charities taking advantage of this opportunity. Tazewell Bingo Center's mission is to support such nonprofits, thereby allowing charity services to remain in Central Illinois.
Cheri was assigned to a few of the same camps I was so I thought I would show some of the pictures I took of her while there.
She also takes pictures at the camp and performa other duties such as assisting stroke survivors with crafts and other events we provide.
One of the sponsoring hospital volunteer nurses, Kim, is here assisting Cheri with craft materials.
The camp Cheri and I staffed in June had a really nice swimming pool and the weather was perfect for swimming.
Many of the stroke survivors took advantage of that opportunity, and Cheri, with other volunteers, joined them to ensure their comfort and safety.
Here she is with volunteers Lori, Amanda and Georgia.
On Friday nights we always try to have a marshmallow roast outdoors, and make what are called S'mores. S'mores are Graham Crackers sandwiches with a roasted marshmallow for the meat. Very sweet and very good. If you have attended any camp or cook-out you probably know what I'm talking about. The recipe dates back to the 1920's, so, if you haven't heard of them until now, I have finally contributed something wonderful to society .
This particular Friday night it rained so no campfire was possible, but does that stop us? No, no. We just move indoors and ignore the ole meany weather.
Ha, HA! Canned heat! Yep, we try to think of everything to keep the camp fun going.
Michelle and Amanda will not be daunted by rainy weather either.
Would you believe that a stroke survivor, unable to function on one whole side of their body plus not able to communicate fluently, would be able to zip down a zip-line...ALONE? Well they can and they do, and you can't imagine how powerful that simple event makes them feel. Guess who assists them to make that happen?
This is at the Illinois camp. We staff over 30 camps every year all over the U.S. and we are still growing. Whenever we see a zip-line at any of our camp grounds you can bet there will be a stroke survivor on it before the weekend is over.
But back to Cheri. If anyone deserves an award for volunteer services it would be Cheri and it should be an award as famous as the movie's Oscar. Well there is one but guess what?
Chuck, Can we put this down now? Chuck?
Amanda, lets put this thing down.
20 snapshots are enough.
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.
Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.
Although stroke is not uncommon, it is possible for people to go through life and never know a stroke survivor. And those who do know a survivor may only know one. When it comes to stroke, knowing one is definitely not knowing all.
Stroke is an interruption of blood flow to the brain, which produces unique consequences in the bodies, brains and lives of those who survive. Every stroke and recovery journey is different — and there are many reasons why that is the case. They include:
How quickly the person having a stroke gets medical attention and the quality of medical care they receive
The type of stroke and the area and extent of the brain injury
Stroke-caused conditions that may negatively affect recovery
The quality and quantity of stroke rehabilitation available
The patient’s general health: Are they otherwise in shape? Are they managing other conditions?
Medications (and side effects)
The kind of family, friends and community support available
And, of course, the survivor’s own attitude and commitment to their recovery
Each of the above contain a wide range of varying possibilities. The number of potential combinations of these variables is vast. It becomes easy to see how Aunt Mary’s stroke and recovery can look completely different than neighbor Jim’s.
We talked with physiatrist Richard Zorowitz, chief medical informatics officer at MedStar National Rehabilitation Network, and professor of clinical rehabilitation medicine, Georgetown University, in Washington, D.C., about the many variables that affect stroke survivors and their recovery.
The Survivor’s Age
Age increases risk, but does it affect recovery? “Theoretically, age shouldn’t affect recovery,” Zorowitz said. “But of course, it all depends upon what survivors were doing prior to their stroke. If they were very active, they have a good shot at getting back to that. If you’re older and more debilitated, the chances of recovery are not going to be as good.”
The Area & Extent of the Injury
Perhaps more defining than age — and what makes every stroke different — is where it happens in the brain. “It is as the real estate people like to say, ‘Location, location, location,’” Zorowitz said. “Certainly, size [of the brain injury] can matter, but I think the location actually can matter even more. A small stroke in just the wrong place can be just as devastating as a much larger stroke. It’s a matter of what neural pathways are affected. You can actually have a fairly large subcortical (below the brain’s cortex) stroke and not do too badly. On the other hand, if you have a little stroke that hits one of the very critical areas where motor pathways travel, that could be very, very devastating.”
To understand more about the effects of stroke on different areas of the brain, see our ongoing series “When Stroke Affects …,” on our Stroke Connection website.
The Quality & Quantity of Rehab
Yet another way survivors can differ is in the rehab they receive — how soon, how much and how good.
How soon rehab starts after stroke makes a difference. “The rate of improvement actually occurs faster earlier on, so it’s important to get going with rehab as early as possible,” Zorowitz said. “Although, doing rehab months or even years afterwards can be very, very helpful.”
“It comes down to that old adage, ‘How do you get to Carnegie Hall? Practice, practice, practice.’”
Dr. Richard Zorowitz
The quality of therapy is not uniform. How much rehab and how good the rehab is both make a difference as well. “Rehabilitation helps the brain reorganize itself,” Zorowitz said. “Intensive rehabilitation can actually help the patient to improve functionally to a much better degree than if you don’t have it.”
Patients need to be properly matched with therapists who have the skills to give them appropriate therapy. Intensity and repetition make a big difference. “Repetition really is the key to the brain reorganizing itself,” Zorowitz said. “It comes down to that old adage, ‘How do you get to Carnegie Hall? Practice, practice, practice.’ The more survivors do and the more appropriate are the things they do in rehab, the more likely they’re going to have a better outcome.” Co-occurring Conditions & Recurrent Stroke Co-occurring diseases, such as diabetes, unstable hypertension, other forms of cardiovascular disease and cancer, complicate recovery for stroke survivors. According to a 2017 study, unstable hypertension can prevent transfer to rehabilitation or may stop rehabilitation as high blood pressure raises the risk of a new stroke. Coronary artery disease or heart failure can limit participation in therapies, as can asthma. Diabetes can cause mental status problems that affect participation in therapies. While co-occurring conditions can affect a survivor’s stroke treatment, those diseases also need to be treated.
“I think the major thing for patients and family members to understand is what medications are for and what are their potential side effects...”
It is important for family members to know that surviving a stroke puts the survivor at increased risk of having another stroke — nearly a quarter of the 795,000 strokes that happen each year are recurrent strokes. Zorowitz said, “I think in terms of recurrent stroke, it’s very important for survivors to make sure that their risk factors and co-occurring conditions are being treated appropriately because otherwise, it will raise their risk of having another stroke.”
Post-stroke Conditions
Beyond the physical, speech and cognitive deficits stroke leaves, survivors also differ in the conditions they experience post-stroke. For instance, it is not unusual for a survivor to experience post-stroke depression, but that is not universal. The same with pain and aphasia. “Any post-stroke condition like pain or depression or pseudobulbar affect can certainly affect the ability of patients to participate in therapy, and participation really is the key to making sure that patients can get better,” Zorowitz said. “It is very, very important that these conditions be identified and treated as soon as possible.” Medications & Side Effects
Another variable among survivors is medications. Survivors may be discharged with a number of drugs they need to take. These can range from simple aspirin and anticoagulants like warfarin, which can put a survivor at risk of bleeding, to statins and high blood pressure meds. Survivors with diabetes may require medication for that. Pain, spasticity or depression are other post-stroke conditions that may require medication, each of which has its own side effects. “I think the major thing for patients and family members to understand is what medications are for and what are their potential side effects so that you can look out for them and be able to reverse them if needed,” Zorowitz said. Social & Emotional Support
Social support is another element that is unique to every survivor. “Does the patient have strong caregivers and family support?” Zorowitz asked. “That can make the difference in terms of the types of rehab that the patient will get because some of the regulations require that. For inpatient rehab, for example, the patient needs to have a place to go following their rehab. If they don’t, they probably shouldn’t be going to the inpatient rehab. If a patient has a good, supportive family and a good, supportive set of caregivers, the chances of them going home — even having severe impairments — is going to be much better than a patient who has no support. Studies have shown that the better the support system for the patient, the less likely they’ll experience depression, and the more likely that they’ll be able to go home and have a better quality of life.”
Clearly, given these variables, strokes can impact individual survivors in very different ways. Two strokes in the same brain can also produce very different results.
“For example, the speech centers are typically more in the left hemisphere than the right,” Zorowitz said. “So, if you have a stroke in the lower frontal area in the left hemisphere, the chances are you may end up with speech problems, like a non-fluent Broca’s aphasia. If you have a stroke in the same area on the other side, it may end up producing left hemineglect or problems with visual perceptual deficits. Location really does make a difference.”
Stroke may be one disease, but it does not produce one outcome. Every stroke is different. The deficits it leaves are essentially unique.
The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how one survivor’s stroke experience can be so different from another’s. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.
Stroke is an interruption of blood flow to the brain, which produces unique consequences in the bodies, brains and lives of those who survive. Every stroke and recovery journey is different — and there are many factors that make that the case.
How quickly the person gets medical attention and the quality of medical care they receive. Different types of strokes require different treatments. Getting immediate medical attention and appropriate treatment may significantly reduce long-term effects of stroke for some. The area and extent of the brain injury The location of the brain injury from the stroke is one of the greatest factors in how the survivor is affected and how well they are able to do in rehab. A small stroke in an area of the brain with lots of neural pathways can be more devastating than a larger stroke. To learn more about how different areas of the brain are affected by stroke, visit the Stroke Connection website. Stroke-caused conditions that may negatively affect recovery
Survivors may experience a variety of conditions post-stroke, including depression, pain, spasticity, fatigue or pseudobulbar affect. Any of these may affect their ability to participate fully in rehab. It is important that these conditions be identified and treated as soon as possible. The quality and quantity of stroke rehabilitation available
All rehab is not the same. Patients should be properly matched with therapists who have the skills to treat their particular needs. The intensity and repetition of rehab make a difference. Starting rehab early typically results in more and faster improvement. Some survivors have complications or circumstances that prevent them from starting rehab early. The survivor’s general health before the stroke
Being fit before the stroke may help with recovery in some cases. However, factors such as the area and effects of the brain injury may prevent that. On the other hand, someone who is debilitated before their stroke is likely to have a harder time with recovery. Managing other diseases (diabetes, heart disease, cancer, etc.) may complicate stroke treatment. Medications and side effects
Survivors may have several prescribed medicines — aspirin, blood thinners, cholesterol and blood pressure medications. Pain, spasticity or depression may also require medication. Each medication has its own side effects. Some may impact the survivor’s ability to work on recovery. The kind of family, friends and community support available
Social and family support play a big part in recovery. Do your best to understand how the stroke has affected the person you care about, and how those effects may impact their degree of recovery. Your understanding and support can go a long way to bolster one of the most important factors in recovery: The survivor’s own attitude and commitment to their recovery.
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.
I was back at work in health care in less than two weeks, because when you have financial need, you can’t wait to go back to work. I had to be picked up and dropped off before being cleared to drive six weeks later. They said my recovery was most likely attributable to my age and being in good health.
