It has been said that sheltering at home due to CoVid-19, i.e. the isolation that results, can have a serious effect on us and especially to seniors. Here are some links to help detect depression, and some tips that might help cope with isolation.
As a stroke survivor, you have about a one in four chance of having another stroke. Exercise may help you beat those odds. But if the word “exercise” makes you break out in a cold sweat without moving a muscle, just think of it as “moving more.”
More and more studies and experts concur: Moving is imperative for stroke survivors to feel better on many levels — physical, emotional, social, mental, cognitive.
“Exercise is a very powerful medicine in the case of patients who have already had one stroke and who are at risk of having another,” said Ross Arena, department head of physical therapy and a professor at the University of Illinois Chicago.
Simply put, because inactivity is often a risk factor for stroke, it stands to reason that activity could reduce that risk.
“I’m a very big proponent that heart health is brain health,” said Sandy Billinger, associate professor in the department of physical therapy and rehabilitation science at the University of Kansas. “The heart is my favorite organ. If the heart is not working efficiently or has blockages, that will affect every organ, the brain included.”
And when stroke has affected part of the brain, total brain health takes center stage.
“The brain really relies on glucose and oxygen to survive,” Billinger said. “If it’s not getting that because the heart isn’t doing its job, that will affect the brain in the long term. Then you’re at risk for vascular dementia, cognitive impairment and a second stroke.”
But right after a stroke, the focus in rehab is on regaining abilities and as much independence as possible. Exercise other than that may take a back seat.
Yet even after rehab ends, “There’s not as much structured focus on lifestyle, on being physically active, on diet,” Arena said. For people who have never exercised, such movement is “an extremely tough sell,” he said, “especially in secondary prevention.”
Billinger, who is also neurovascular division director of the KU Alzheimer’s Disease Center, also cited the hesitation factor. “I can talk all day about the benefits of exercise, but if somebody has never exercised and is not interested, it’s a difficult conversation to have,” she said.
Even if you were physically active before your stroke, physical and cognitive changes may pose new challenges. That can be intimidating for some survivors. Keep in mind that almost everyone can find a way to move more. You don’t have to be able to run or walk without assistance, use fancy equipment or even leave the house to get started.
Whether you’re at the starting line or a few steps (or leaps) out, try these tricks to incorporate movement into your everyday life. Ten sounds like a good, digestible number, so here we go:
Dr. Ross ArenaDr. Sandy Billinger
Move.
Do so as much, as often and as intensely as you’re able. If that means marching in place in your wheelchair or emulating boxing movements — with or without weights — go for it.
Terry Vine / DigitalVision / Getty Images
“This might mean getting up from the chair, taking a few laps around the room if you’re going to the kitchen, or walking outside with a family member,” Billinger said.
There are many ways to move. If you’re mobile, one of the best is walking.
Simply sit less.
Maybe stand during commercials if you’re watching TV. Or if you’re reading or knitting, set the timer to go off every half-hour to remind yourself to stand up.
Know the guidelines, but don’t let them overwhelm you.
If you’re a stroke survivor — and you can engage in physical activity — aim for three to four 40-minute sessions of moderate- to vigorous-intensity aerobic exercise per week, according to the American Heart Association. Moderate exercise such as walking briskly or riding an exercise bike should make you break a sweat or noticeably increase your heart rate. For a vigorous activity, try jogging. If these are too difficult …
Talk to your health care professional about your concerns.
Keep a few things in mind: No question is dumb. You’re in charge of you. And, added Dr. Billinger, “This is a whole lifestyle shift. It’s challenging because there’s a lot you’re going through.” So be upfront. Tell your provider, “I’m interested in physical activity, but I don’t know where to start,” Billinger said.
KALI9 / E+ / GETTY IMAGES
If you’re concerned about balance, your doctor or physical therapist might recommend a recumbent stepper or recumbent bike, she added.
The key is having what Arena called “a bidirectional conversation,” meaning that you are an integral part of a team of providers.
“It’s about educating people on the benefits of moving more; reframing conversations so they’re not ‘150 more minutes per week,’ but ‘any movement is better than none,’ or even just sitting less during the day.
“It’s more about that amount of sitting they do, the steps they take and their structured exercise. Get them to do all of those? Awesome. Get them to do any one of those three things? Awesome still.”
Remember, everything adds up.
“Three to five 10-minute bouts of movement count as an activity versus just sitting,” Ballinger said, “
Listen to your body.
“I’ve had to educate people about exercise: ‘You will breathe faster. Your heart will beat faster,’” Billinger said. “Some people who don’t exercise don’t know that; they hear that shortness of breath is bad. We have to be careful that we’re educating our patients not to overdo, and that soreness is OK, but pain is not.”
Think outside the exercise box.
David Sunshine, owner and director of the Dallas Yoga Center, said yoga can be instrumental in helping stroke patients deal with gait, mobility, flexibility and overall energy.
“Yoga creates new neural pathways that will encourage the right and left hemispheres of the brain to communicate and work together,” he said. “This in turn creates greater mind/body awareness, freedom of movement, and can help someone feel more fully alive.”
The key is making sure the movements are simple, slow, cross-lateral and are done mindfully in conjunction with the breath, he said. “Do them from a full sense of awareness, and not just a mechanical repetitive motion.”
Keep in mind that movement begets movement.
You can be your own snowball, your own tumbleweed. A walk around the living room can progress to one around the block and then throughout the neighborhood. In the process of strengthening your legs, Billinger said, you’ll find that getting up from the couch or on and off the toilet is easier.
Move more, Arena said, and “you’ll have less shortness of breath going up the stairs.”
Seek company.
Look for activities the family can do together like walking or chair exercises, Billinger said. “That way, you’ll all engage, and everybody is healthier. Whatever you can do as a family will be the best thing.”
Or check out community centers or the YMCA. Many offer beginner classes, which give you not only companionship but also accountability. “Water programs are excellent,” Arena said.
***************************************************************** 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.
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.
