June is Aphasia Awareness Month!
On Thursday, June 27th at 4:00 pm EST, Griswold Home Care hosted a FREE national webinar workshop titled ‘Aphasia – Making Their Voices Heard’. Chris Kelly, M. Ed, presented the fourth installment of the Monthly Solutions Series Webinar. This webinar was co-hosted by Ellayne S. Ganzfried, M.S., CCC-SLP & Executive Director of the National Aphasia Association. We revealed multiple tools on the webinar as a toolkit for anyone working with or managing care for Aphasia. All health care professionals, caregivers, families supporting Aphasia, advocacy partners, and/or clients living with Aphasia are invited to view the webinar.
Welcome to today’s webinar workshop titled Aphasia Solutions Making Their Voices Heard. My name is Derek Jones and I’m honored to open today’s workshop. We have a great call and a great panel. This webinar is part of Griswold Home Care’s Solution Series program which brings a suite of monthly educational materials to busy families and healthcare professionals and equips all attendees with tools and solutions that can be used tomorrow to assist those in need. We’re thrilled to be partnering with a few special guests and would also like to thank our co-host and sponsor from the National Aphasia Association which you’ll hear from during this workshop.
A few housekeeping items: all lines are muted and the panelist lines are recorded. This webinar will run 60 minutes and the recording and slides will be available in email for all registrants. We will close the call with questions and answers. Our goal today is to increase awareness and understanding of Aphasia and to provide practical tools and solutions for all those that are on the call today. Throughout the call we encourage your participation through a process called brain writing. Most webinars are one-way and this is very much a way for you to participate in the experience of this workshop. To keep it simple, if you have questions, comments, thoughts, want to share your experiences living with or managing Aphasia, we encourage you at any time in the workshop to comment in the GoToWebinar panel. The GoToWebinar panel is available in your upper-right corner and can be expanded and collapsed by clicking the red arrow.
Without further ado, let’s welcome our esteemed presenters today. Our first presenter and panelist is Ellayne Ganzfried and she is the Executive Director of the National Aphasia Association. Elaine has a fantastic background and we’re honored to have her on the call today. Elaine is the past president of the NYS Speech/Language/Hearing Association and is on the council of State Association Presidents for Speech Language Pathology and Audiology. Elaine is an ASHA fellow and she has written articles and presented nationally and internationally on a variety of topics including Aphasia, rehabilitation and leadership skills. We’d like to open up to Elaine to greet the audience. Elaine, thank you and welcome to the webinar.
Ellayne: Thank you, Derek. It’s a pleasure for me to be here and I look forward to sharing information about Aphasia with everyone.
Derek: Great. Our next panelist is a very dynamic duo. We welcome both Barbara and Dan Martin. Barbara is the immediate past president of the National Aphasia Association and has been living with Aphasia for many years. Her courage and dedication is truly embodied by her participation and her words on the call today. Dan is one lucky guy and gets to call Barbara his wife. Dan has been a family caregiver to Barbara and had a depth of experience in advocating and supporting communities and groups of all levels and raising awareness about Aphasia. We welcome both Dan and Barbara and welcome you to greet the audience as well. Dan and Barbara.
Barbara: I had a stroke and then Aphasia almost 30 years ago in Greece with my whole family. My boys were in high school at the time. I think now, 30 years later, my friends…
Dan: And I’ve been living with Barbara for actually 51 years a couple days ago and was with her when she had her stroke. I suddenly felt very much at a loss as to what to do with this situation. So we were able to get her back from Greece after a week in Greece in the hospital, and the rest as they say has been all downhill from there. We’re happy and honored to be on the webinar.
Derek: Thank you both Barbara and Dan. Our final presenter is Chris Kelly who has a masters of education and is the Director of Learning and Development at Griswold Home Care. Chris is the architect of this Solutions Series Webinar program and has worked previously for the Alzheimer’s Association in various health education and advocacy roles. Chris, welcome to the panel and thank you for attending the webinar.
Chris: Thanks, Derek. Welcome everyone. I just had the amazing experience of working with people like Barbara and Dan and Elaine, and we just want to make sure we take the opportunity to thank all of you, specifically people living with Aphasia, for your courage and determination; for family caregivers for your dedication, patience and support; for professional caregivers and franchisees for your skill and dedication. So thank you everyone. Ellayne, just to get us started, can you talk a little bit about the history of the National Aphasia Awareness Month? Some of the key elements of the 2013 resolution and then just provide a basic overview of Aphasia for people that aren’t familiar.
Ellayne: My pleasure, Chris. Thanks very much. So June is National Aphasia Awareness Month. Of course I always believe that every month is National Aphasia Awareness Month, but we are given a month as other disorders and conditions are. It actually started as being a week, National Aphasia Awareness Week, and I guess it’s about 20 years now that we decided to expand it to an entire month so we can work collaboratively across the company to raise awareness of Aphasia.
As you see, our vision is a society in which Aphasia is a commonly understood word and where all people with Aphasia have access to appropriate education and resources that would enhance their potential for an acceptable quality of life. And so the mission of the National Aphasia Association is to increase universal awareness and understanding of Aphasia, and we work very hard to do that as well as providing resources and support for people with Aphasia, their families and caregivers.
So we’ve been fortunate for the last six years to have Senator Kim Johnson of South Dakota sponsor a resolution recognizing June as National Aphasia Awareness Month. For those of you those of you that don’t know, Senator Johnson actually had a stroke and has Aphasia. He actually was re-elected to office for a second term after he had Aphasia. So he knows firsthand what it’s like to live with Aphasia and along with Senator Mark Kirk from Illinois who has had a stroke and also had Aphasia initially, they have introduced this resolution and it passed on June 12th of this year as it has for every June the past six years.
The importance of this is that Congress is recognizing that Aphasia needs to be increased in its awareness. It’s important that the United States strive to learn more about Aphasia; that we deserve more attention; that we need to make the voices of people with Aphasia heard and promote research, rehabilitation and support services. So we’re very proud to have had this resolution introduced. On a related note, we’ve also had the resolution and proclamation introduced and passed in many, many states as well as cities across the country. So individuals with Aphasia and their families have gone to local legislators and have had it passed as well.
So let me talk a little bit about what Aphasia is and the different types of Aphasia. Certainly a very short webinar such as this, we can’t possibly go into great detail. But I am going to give you an overview so you have some of the basic information. So Aphasia is an acquired communication disorder that impairs a person’s ability to process language. But very importantly, it does not affect intelligence. People with Aphasia have difficulty speaking and understanding others, and most people with Aphasia also have difficulty reading and writing.
It’s not necessarily a disease by itself, but rather a symptom that results from other diseases and conditions. And so that’s why awareness is so difficult, because it’s not its own disease process but you can acquire Aphasia as the result of something else. For instance, the most common cause is a stroke and there are several different types of strokes: there’s ischemic stroke and hemorrhagic stroke, but if you have a stroke or if you have damage to the left side of your brain which is where most of our language areas are housed, you will have Aphasia. There’s about 800,000 strokes a year now and about 25 to 40% of everyone that has a stroke will have Aphasia to some extent or another. So that’s a lot of people that have Aphasia.
A brain tumor is another cause of Aphasia. And because our medical system has gotten more sophisticated, people are living after they had a brain tumor for a while once the tumor is removed. If the tumor is on the left side of the brain, once again, they will have Aphasia as a result of the brain tumor. Infection. So there’s lots of different unfortunately kinds of infections you can have in your brain and that may also result in Aphasia. Dementia, which actually there’s a specific type of Aphasia that’s a clinical dementia. What’s different about this dementia is that it’s language-related. So because Aphasia is a language impairment, if it’s a dementia which affects the language areas then we actually call it Primary Progressive Aphasia. That’s how dementia can cause Aphasia. And then lastly brain injury or head injury. About a third of all those who have brain injury will acquire Aphasia. And people can have brain injury as a result of accidents, as a result of gunshot wounds. Probably the most famed person right now that you know of
former congresswoman Gabrielle Gifford. So brain injury is a big cause of Aphasia as well.
Now let’s move to the different types of Aphasia. Once again, this is a very basic and brief overview but I just want to give you some of the general types of Aphasia that people may come across or may experience themselves and may have heard of. So first we have Expressive Aphasia. Expressive Aphasia is also referred to as Broca’s Aphasia because that is the language area in the brain, the area in the brain that was impacted. Or non-fluent Aphasia. So those terms are often synonymous. And what happens with Expressive Aphasia is the speech is very effortful and it’s often hard to convey your thoughts. The person knows what they want to say; they just can’t get the words out. They often say the words are in their head. They understand for the most part what’s being said to them, but they have a hard time finding the exact words they want to say. So their sentences are often shorter and may not be as grammatically correct as you would expect. So that’s expressive or non-fluent Aphasia.
We contrast that with Receptive Aphasia, also called Wernicke’s Aphasia, once again named for the area of the brain or Fluent Aphasia. So this is slightly different in that the person actually can speak quite fluently. In fact, we often say they can talk a blue streak. But oftentimes their words don’t make sense. It’s hard for them to process and comprehend the spoken and written word. So in Receptive Aphasia, their comprehension is more impaired. They can speak but because they’re not understanding, they’re not even understanding that they’re saying things that may not be appropriate. And those that have Receptive or Fluent Aphasia are more often mistaken for someone who might be mentally ill or under the influence of drugs or alcohol because they’re speaking a lot and not making sense. So that can be quite a difficult thing to people.
Next we move to Anomic Aphasia, and actually people that have Aphasia, no matter other types as well, often have what we call Anomia. And Anomia is difficulty naming. But specifically to Anomic Aphasia, the person can’t find the particular words. It’s more common for nouns, so objects, people, places. And people will very commonly say the word is always on the tip of my tongue. So we all experience that to one extent or another, more so unfortunately as we get older, but for the person with Aphasia this is how they are living 24/7 and you can imagine the frustration.
Global Aphasia most often occurs right after the injury to the brain. And this is the most severe form of Aphasia in that the person really can’t speak much. They can’t understand speech nor can they read or write. The good news is that most people who have Global Aphasia right after their brain injury often move to a lesser form of Aphasia or evolve to having other ways of communicating.
And the last, like I mentioned previously but want to touch on again, is Primary Progressive Aphasia. So this is a language disorder that gets worse over time. So unlike Acquired Aphasia from a stroke or a brain injury, Primary Progressive Aphasia is degenerative. So the person maintains their ability to take care of themselves. Often their cognitive skills are intact. They can remain employed for a time, but the language is what continues to deteriorate. So while those with Acquired Aphasia continue to improve; in fact, we talk about they’re continuing to improve over time, unfortunately those with Primary Progressive Aphasia will continue to get worse over time. Which does not necessarily mean that there are not intervention strategies and ways we can help those folks as well. So, let’s move on now to the solutions.
Chris: Thanks for a great overview, Ellayne. Again, this is Chris. So we wanted to give you some background information related to the way we design our webinars. We have a proprietary solution mining process and methodology. It really helps us insure that our topic, content and tools are accurate, current and relevant. We do this by reviewing peer-reviewed journal articles; going on social media portals like discussion boards where patients and healthcare providers share stories and information; reaching out to the advocacy organizations like the National Aphasia Organization, and also from reviewing the comments and questions that come up through our webinar today.
So let’s start by reviewing our first literature review finding. So through this recent quote by researcher Dr. Alexia Rhode, we learn that there is a need for improved consensus guidelines for Aphasia diagnosis and treatment. These guidelines are important because they really provide a roadmap for healthcare providers who treat people with Aphasia. So Ellayne, could you walk through some of the current approaches for diagnosing and treating Aphasia?
Ellayne: Absolutely. Thanks, Chris. So we like to think of diagnosis as well as treatment as being a very dynamic process. So first I just want to point out that the diagnosis of Aphasia is in the hands of the speech language pathologist. And so the speech language pathologist is the person trained to be able to provide the diagnosis of Aphasia and also provide the treatment. So in terms of the diagnosis, can we move to the next slide please? Thank you. We assess a variety of areas. Because of the language impairment, language is not just spoken; it’s not just written. It involves a whole plethora of areas, and so we need to look at the person . . . the assessment of the person: written, spoken language, their naming abilities. We do formal and informal testing.
We also need to look at their auditory processing. What are they understanding? What are they comprehending? So there’s a variety of tests that we can administer as well as informally speaking to the person, asking them questions, and we also, during the diagnosis, we also look at how they might benefit from some strategies; from some compensatory strategies. What might we do to help them in the process of recovering their language when they get into treatment?
So when we talk about Aphasia treatment, we like to say there’s no actually one technique for Aphasia treatment. In fact, what works for one person may not necessarily work for another person. That’s the beauty of being able to have various techniques and trying different things with people. We talk about multi-modal treatment, and that’s where we use all forms of communication in treatment. So because the person has a language impairment and most likely they can’t get the words out, we can use other ways to help them to get the words out. So we use pictures often with the person with Aphasia. We use gesture; gesture’s really important. We use writing, so sometimes people with Aphasia can write a key word or they can recognize the first letter of an object. So we like to use all modalities.
Speech therapy, as I said, is a process and through speech therapy we use all these different modalities. Technology as you know has become increasingly popular and increasingly advanced and we can’t even keep up with all the different applications that have come out, but technology has really helped people with Aphasia to communicate and also helps people to practice on their own at home using technology.
We do reading and writing therapy, and I do want to mention the live participation approach to Aphasia. So while this is not a specific technique, it’s actually a philosophy that underlies most Aphasia treatment. And that is that the person with Aphasia is central to the process in terms of their treatment. Obviously it’s their life, and so we need to talk with them about their goals, about what’s important to them. And that we create the treatment to revolve around what’s motivating and important to the person with Aphasia. And of course we need to be able to provide them access to community services and support, because unfortunately insurance coverage runs out very quickly for people with Aphasia and that’s something that we really need to address in our healthcare system.
And so people with Aphasia, after they’ve exhausted their services, their insurance coverage, they need to find community resources to be able to continue to work on their communication. And that’s where the National Aphasia Association helps people get connected to these resources and also helps people develop community groups and programs that they want to in their geographic area. So it’s really important that we keep people working on their communication because as we know, the brand continues to change and improve. We have something called neuroplasticity. Because we know that now, we’re able then to have people improve years after. You can see that Barbara’s a perfect example of that. She had her stroke 30 years ago and she reports to us that she continues to improve and we continue to see her improving through the years.
Chris: Great, thank you Ellayne. So let’s talk through our second literature review finding. This quote from Dr. Neil Donovan from the Spring 2013 edition of Stroke Connection captures the important finding that while medical needs are important for those with Aphasia, there’s also a great need to assess and treat both the emotional and psychosocial issues as well. We mentioned earlier our brain writing activity. This is a great time to share, for those of you living with Aphasia and family caregivers, a great time to go into the chat bar and share how Aphasia has affected your life outside of medical issues.
And Ellayne, it would be great over the next several slides if you, Barbara and Dan can help us learn more about living with Aphasia by sharing your firsthand experiences as well as finding some surveys, social media and your experiences in the advocacy space.
Ellayne: Absolutely. So this quote really embodies what I reference as the life participation approach because everything affects the person and their social, their emotional, their family members. We like to say that when one person gets Aphasia, it’s not just one person. What affects one affects two, three and four. It affects the family, the friends and everyone around them.
So I was actually privileged to be part of a recent survey and article that we did to look at what people with Aphasia and their family members ranked as important topics: things they wanted to keep learning about; the barriers that they were facing out there. What are their needs? And we surveyed about 302 people, and this was the first time that we’ve done any kind of survey like this since 1988 so it was really important work. And we looked at also the ease of access of resources and people with Aphasia and their family members rated resources as somewhat difficult to find, which means that we need to do a better job of making resources readily available and having people know what Aphasia is so that they can find resources.
Some of the topics that ranked as most important were how to keep improving communication strategies, coping strategies, strategies for caregivers, public awareness. Local public awareness of Aphasia. So I’m wondering, Dan, if you might share with us your feelings about what strategies are needed for caregivers?
Dan: I’d be happy to. I think part of it depends on your relationship. A great deal of it depends on your relationship with the person with Aphasia: with the relationship between the caregiver and the person with Aphasia. And I can speak certainly to if you happen to be a spouse, I think there are two key things to keep in mind. One is never, ever, ever give up. Never, ever, ever stop fighting. There’s a huge amount of effort involved in recovering speech from Aphasia. A lot of the recovery is a function of how hard and how diligently you go at it.
And the second thing I would encourage people to keep in mind, and this goes not only for the caregivers but the people with Aphasia as well, and this is you never do stop. People have all kinds of mythologies about after a couple of weeks or after six months you’re going to go as far as you get. I see after almost 30 years, every now and then Barbara comes up with a word that she has not come up with before. So if you keep those things in mind, the need to really keep at it and stay at it. It’s tough; it’s not easy. It is a very, very difficult and grueling task. I remember Barbara sitting in front of a mirror learning how to pronounce words and just going over and over and over, just drenched with perspiration at the effort it took her. But it paid off and she can communicate quite well now and I’ve seen not just Barbara but a number of other examples of people who just refused to give up the fight. So I encourage those two things.
Ellayne: Exactly. Those are wonderful things to share and great advice. So I’d like to move from the findings from our original survey, because although this was done in 1988, these findings still hold true. Unfortunately, more than 70% of people with Aphasia are unable to go back to work. They can’t go back to the job they originally had, and many employers are not very willing to work with the person. And so we have to do a better job of retraining people and having vocational counseling. Barbara, I’m wondering if you might share your experience since you were a teacher I believe when you had your stroke?
Barbara: Well, first I had a long process of getting my speech. So when I’d get home after six months in the hospital, I went to a movie once a week with my husband because I feel whole because other people are quiet watching a movie. It’s different at home watching television alone. A group of people, I feel whole. That is very important. Then I have a friend that goes to [inaudible 0:28:05] in Manhattan and she’s about 80 years old so she doesn’t want to do it anymore, going to Manhattan. So together we went to Burke and started a group. In the beginning I had two questions, and I have to look at the newspaper then I have to write it down and practice in a mirror how to say a question. But that is a start.
About two and a half years down the line, I went back to teaching. I have two classes, about six or eight people in a class. It’s an alternative school in the high school so they allowed me to do that. I think I give something special for the group and the group gives so much back. So I’m very happy.
Ellayne: Well you’re unusual in that you were able to go back to work, but also you proved wrong what we have here in our survey. Over 90% of people with Aphasia talk about people avoiding contact with them and also they’re feeling isolated. Lots of people with Aphasia become depressed and feel isolated. And while I know Barbara that you did feel that way, you didn’t let that stop you. You went out and you still became social. You went out and started a group for people with Aphasia. So that was a wonderful thing that you did, and you’re a wonderful example for other people with Aphasia to do. Dan, we talk about the reaction to the diagnosis and the impact on the family. I know that you have a wonderful story to share about your son after Barbara had her stroke.
Dan: When we came back from Greece, Barbara was in the hospital in New York. We live in the suburbs. I started to take the kids in. I took the two older sons, both of whom were quite apprehensive about seeing their mother. When they had last seen her, she was lying on a cot in a little Greek clinic without being able to say a word and they didn’t know what they were going to see when they got to the hospital.
Our third son, youngest son who was 14 at the time, just did not want and couldn’t face the prospect of seeing his mom in that condition. He concocted all kinds of excuses about why not to go in. He had homework and he had this and that and the other. Finally I did speak to the teachers, and one morning I said we’re not going to school today; we’re going into New York to see mom. He really had no choice at that point. We were in the car on the way to New York.
Once he saw her and once he realized that she was alive and she kind of gave him a lopsided grin because as usual the face is somewhat disfigured with the muscle tone not going on your right side. But once he realized she was able to smile and she was . . . obviously she was going to get better, he got reconciled with it. Whether or not it had anything to do with it or not, many years later he’s now a physician. So you never know.
Ellayne: So we don’t know, maybe that encouraged him to become a doctor.
Dan: I’ve always thought that it did, yes.
Ellayne: That’s wonderful. It’s a really great example of younger and younger people are having strokes and acquiring Aphasia. Barbara was only 45 so she had young children at home. And so now we need to deal with the reaction of the young children, the family members, and we don’t often deal with that. I think it’s important for people to realize that Aphasia is not just for your grandmother or grandfather; it’s also for younger people.
Which leads me also to this new world that we’re in now in terms of social media. So we all stay connected through a variety of ways. Email now is almost obsolete for people, and now we’re communicating through all these different social media examples. So there’s Facebook and there’s Twitter and Skype and ooVoo and these are all ways for people to communicate. We actually have our own Facebook page for the National Aphasia Association. There are several other forums out there for people on Facebook. There’s one group on Facebook that I want to mention and it’s called the Aphasia Recovery Connection, ARC, and this is actually a Facebook group of people with Aphasia and their family members that can chat with each other through Facebook. So this is a really nice way to share their own experiences and get some advice.
Also Skype is a great tool for people with Aphasia. Skype and ooVoo are ways, most of you know, to see people on the computer: video chatting. And as you know, if you have a communication impairment, it’s a lot easier if you can see somebody and be able to use your gestures and your writing and all your different ways to communicate to be able to talk with someone else who’s either nearby or not so nearby. And we’ll give you some other examples later on of some ways to use social media.
So let me talk a bit now about advocacy which is really important for us because that’s what we do. Part of what we do through the National Aphasia Association is we advocate on behalf of people with Aphasia and their families. So everything that we do is about making the person with Aphasia and their families feel like they’ve been respected and like they can move on with their quality of life.
And so it’s important for the person with Aphasia to have a team approach. There’s no one professional that should be working in isolation with the person with Aphasia and their family. So as I said previously, of course we have the speech language pathologist to work with the person on their communication. You need a physician of course, and so typically you either have a neurologist or a physiatrist and a physiatrist is a doctor of physical medicine and rehabilitation. So if you’re in a rehabilitation setting, often times you’ll see a physiatrist. But either one of these types of physicians could be someone who’s part of your team to help manage your care.
Because someone has had a stroke or brain injury, oftentimes not just their speech is affected but they also have some physical issues. And because of the way our brain works, what happens to the left side of the brain in our language area affects the right side of our body. So many people with Aphasia will also have a right-sided weakness or paralysis of either their arm, their leg or both. And so that’s where they need to have a physical therapist involved as well as an occupational therapist who can help them with some of the activities of daily living that they need to relearn as well as writing and some other small motor movements, whereas a physical therapist would deal with large motor movement.
And very importantly, part of a team that we often forget is either a psychiatrist or a social worker. We’re talking about somebody who can assist with our social emotional issues. Because we talked about not being able to communicate and making someone become isolated and depressed, there’s a life change for them. Their job may change. They really need to talk with somebody or have someone involved in that aspect of their care. We need actually more and more psychologist, psychiatrists and social workers who understand Aphasia and who can communicate with people with Aphasia so they can also go and get the kind of resources that they need in that area.
Also in terms of advocacy, the National Aphasia Association has an 800 number. So we have a resource center. People can call us from all over the country. Actually I shared recently that they call us from other countries as well. And anyone that calls us will get a free information packet, but we also can help connect you to groups, programs and other resources that you might need in your community.
Another point of advocacy is helping people raise their voices through technology. And so we advocate in a variety of ways, and as I mentioned earlier, this explosion in the world of technology now, there’s many different ways for people with Aphasia to get their voices heard even if they can’t speak themselves. So we just name a few of the different applications available through smart phones or tablets. Most people now have some type of device.
The nice part about technology now is everyone has some sort of technology. And so if it’s assisting you to communicate, there’s not that stigma any longer of carrying some kind of a device that’s different than anybody else because everybody wants to be cool and has an iPad or an iPhone. So some of the things, once again, there are applications that will turn text to speech or speech to text. There are books you can read online or also that will read to you. We can use phonemic cues. So in other words, we can help people to communicate by giving them the first sound in a particular word.
We also have talking picture dictionaries on our devices and I mentioned previously the Skype or the ooVoo as video calls. And this is really just the tip of the iceberg in terms of technology. Later on we’re going to give you many more resources for technology that you can access on your own.
So let’s talk a little bit about some of the challenges that arise with Aphasia for the person with Aphasia and for the caregiver. So I like to point out to people that we can talk very technically about types of Aphasia, but the person with Aphasia really needs to know how is this going to impact my life? And so as you can see on the screen, if you have Aphasia, you’re going to have trouble talking in a noisy environment; having a conversation; following the television; writing a letter or filling in a form; using the telephone. Another area that impacts people are numbers. People with Aphasia may have difficulty with numbers, and so they oftentimes can’t even say their address and they can’t write a check and do all those basic activities of daily living. Barbara, maybe you want to share with us what you found to be your greatest challenge of living with Aphasia?
Barbara: I have one example. About nine months after I came home from my stroke, I’m in the kitchen trying to make dinner and I’m so frustrated because I’m doing things that are not normal. I’m so angry, I strike like this and I’m stomping on the floor. I’m so frustrated about life in general, but the pots and pans . . . I need a way to get my anger out. Another thing, early on I didn’t talk at all but we’ve had close friends across the country call me and I’ll talk for half an hour and I am not doing the talking. They are talking about their life and what they’re doing. So other people is important too. And the big thing is I met a group like National Aphasia Association, and about four years after I . . . I’m not perfect at all, but better, I got interested in this organization and helping others. I’ve got committees and last year I had six years of president and director of National Aphasia Association. It’s wonderful to give after all the other people have given to me for so long.
Ellayne: And you’ve been a wonderful, wonderful advocate for the NAA serving as our president and serving as an example for others. So that’s been terrific. So if we look at the caregivers, you see what caregivers have a hard time doing. I think the most important point that you see here is that family and caregivers don’t know what to do. Dan, was that something that you experienced? That you weren’t sure what you needed to do.
Dan: I think as I look at the list of things you have there on the screen, every single one of them has troubled me in varying degrees. I wouldn’t add to it because you’ve got it all there. The only thing I might add is one thing that we’ve found that has helped Barbara a lot if playing a musical instrument. If anybody out there plays the piano or the saxophone or the flute or piccolo or whatever, it’s a terrific way to regain frankly some muscle tone as well as in our case it seems to have improved Barbara’s speech.
Ellayne: Yeah, music is very powerful for all kinds of things but particularly for people with Aphasia because music is on the left side. Our creative side is on the right side of our brain, and so oftentimes people use music to help facilitate their communication. So that’s actually another treatment strategy for people. Thank you for sharing that with us.
And also if you’ve performed music before, it motivates you. That’s another thing that’s going to help you improve because it’s something that you enjoy doing. So now that we’ve talked a little bit about the different types of Aphasia, the treatment, the diagnosis and we’ve given you some of the challenges as well as some beginning solutions, I’m going to turn it back to Derek who’s going to help us talk a little bit about the toolkit.
Derek: Absolutely. Just fantastic information, I think, between Dan’s quote of never giving up and Barbara. Despite everything you’ve been through, saying you have a focus on giving back, both of those are just truly heroic comments. So again, thanks to our panelists for the great overview of Aphasia and how we arrived at the topic, making their voices heard. We’re going to pass the presentation into the section of our workshop which will provide all attendees with tools that have been identified to assist with identifying, managing and living a high quality of life with Aphasia. And so for this I’m going to turn it back to Chris and Ellayne, and if you wouldn’t mind walking our audience through some tools that you’ve identified to really bring those to the service, so those who are living with Aphasia or if you’re a healthcare professional, so they have tools that tomorrow they can use for those they love?
Ellayne: Well it would be my pleasure to walk through some of these tools. I do want to say that we’re proud, from the NAA, we’ve actually just launched our new website, a brand new website, June 1st in conjunction with National Aphasia Awareness Month. So while we have most of it up, there still may be some things that are not complete. So if you go through our website and there’s not information there, know that it’s coming.
What’s important about our new website that I want to point out to you is we’ve now organized the information. So we have it by I have Aphasia, so the person with Aphasia can click on it; I’m a caregiver, or I’m a professional. So it serves for each person to find the information that they need. I do need to tell you that there’s a lot of crossover. Redundancy is often good, and so you can go to a variety of places to get similar types of information so that if you don’t find it at one place, you may find it someplace else.
So if you look at our I have Aphasia menu, of course we talk to you about what is Aphasia? But we also help you to find the therapy and support that you need. That links you to our groups and programs page where you can search by your zip code or your address to find a group or program near you. We provide you with some tools for communicating, so some easy tips for communicating. And then if you need some more help, we give you some other resources that you can connect to in your community.
We have a really nice section called My Story, and I really encourage those of you with Aphasia to participate and send us your stories. This is where we post first-hand experiences. People write their own experience, their personal perspective, and it’s really powerful for us to read other people’s stories. You can either tell it to us or pictures or however you need to do that. We have a section on assistive technology, and so that will help you to connect to resources for technology, both those that are devices for people with Aphasia as well as those that might be applications or other kind of support.
And of course people always ask about research. While we don’t list specific research projects on our website, we do connect you to other places where you can find research and one of the best places is clinicaltrials.gov and we’ll provide you with these resources later on as well. But also we have some articles about what to look for when you’re doing research. And of course if you would like to help us, we need your help because we are a small not for profit organization and not only do we need volunteers but we also need your financial support to be able to provide our programs and continue to provide our services. So there’s a place for you to click there if you’d like to be so kind and generous as to help us.
So the next thing I want to point out to you is our YouTube page. So we actually have just completed a series of 15 short videos, one to two minutes each. They are on our YouTube page. We have a page dedicated to the National Aphasia Association. They go through a variety of topics related to Aphasia. So we have basic videos about what is Aphasia? What is Primary Progressive Aphasia? But then we go into things more in depth. We have people talking about the reaction of the family. We have Dr. Oliver Sass who is a world-renowned neurologist and author and happens to be a member of our board of directors. He talks about music in Aphasia.
We have our program coordinator, Stephen Symbolik, who talks about our emergency responder training program where we train police, firefighters and EMTs to know about Aphasia. The actress Jan Maxwell talks about her experience playing a person with Aphasia in the theatre. We have people talking about that your life is not over. How do you get your life back? How do you live and work with Aphasia? So I really encourage you to take a look at these videos because they’re very short and they’re very powerful and I invite you to share them with other people so that they can become educated about Aphasia.
We’ve already mentioned our Facebook page which is another resource, and we just want to show you briefly what it looks like. I encourage you to like us on Facebook so that you can see our posts. You can also communicate with us on Facebook. So you can post something on our Facebook page. Also through Facebook you can link to us so that you can contact us directly and you can communicate with others through our Facebook page as well as our Twitter page and also connecting with other Aphasia groups on Facebook.
Another really nice basic resource about technology appeared in Stroke Connection magazine, and it was called Everyday Survival. It’s about talking tech. It’s a really brief article but a really nice article that really gives you an overview of the various kinds of technology available to people with Aphasia and gives you a few specific examples of some of the applications. You can find more information about technology on our website as well as some other applications that are out there, but this is a really nice beginning overview.
And when we talk about advocacy, for us the most important tool for advocacy is our bill of rights. So the National Aphasia Association actually has adopted an Aphasia bill of rights, and this was adopted in 2006. It talks about what your rights are as a person with Aphasia. That you have all the same rights as everybody else, and you have the right to be told if you have Aphasia. We have people telling us that they’d never even heard the word Aphasia. So you need to be told about Aphasia. You need it to be explained to you in a way you can understand it.
You have the right to resources, to be able to be a functioning member of society. And so we really encourage people to use this bill of rights and to post it if they are a healthcare provider. Post it in your place of employment. And we have this available to you as a document that we can send to you that you can post.
So those are some tools for people living with Aphasia, although as I mentioned a lot of these tools will help professionals as well as caregivers. In terms of family caregivers, we do as I said on our website have a specific page for I am a caregiver. So not only do we have an Aphasia bill of rights, but we also have a caregiver bill of rights. We recognize that as a caregiver you also have rights, so be sure to take a look at that.
We have tips for you on how you can communicate better with a person with Aphasia, how you can become involved once again with the NAA, and then we have a place also for your own stories. So we list stories written by family members, caregivers or friends. We encourage you to share your story with us. And we have some really nice resources and articles about Aphasia therapy as well as assistive technology and research that you should take a look at and that you can share and get more information. So those are some nice resources for the caregiver.
And then of course the healthcare provider. On our own website, we do have a place for the healthcare provider. And while the NAA is really designed for people with Aphasia and their families, we recognize that the professionals are the ones that help us connect to those people with Aphasia. We have an affiliate program, so you can become an affiliate of the NAA. And actually this is not just limited to professionals. People with Aphasia in their families can become an affiliate, and you can find out more about our affiliate program on our website. We give you information about support groups and programs. If you are a professional and you run a program or a group, we can list it on our website and we give you some more in-depth information on Aphasia therapy and assistive technology.
There’s a couple of other nice tools for healthcare providers. The American Speech Language Hearing Association, ASHA, has just embarked on a program. It’s called their practice portal. They’ve started to create some evidence-based practice maps for various disorders. We’re very fortunate in that Aphasia is one of the first ones that they’ve done. So you can go onto ASHA and look at these maps and they give you a really nice overview of Aphasia assessments, treatments and service delivery. And it’s also available actually for consumers to take a look at as well.
And the last tool that I want to share for healthcare providers is the ANCDS which is the Academy of Neurologic Communication Disorders and Sciences. This is a group of people dedicated to serving. They’re professionals serving people with Aphasia and other neurogenic disorders. They have a lot of nice evidence-based practice guidelines in Aphasia as well as other neurogenic disorders and they also have some practice resources on the website and some nice links to research. So it’s a really nice professional tool to find out more about Aphasia.
So those are some of our solution toolkits for you in terms of showing you some of the specific websites that might be helpful for you. And of course take some time to explore them. So as we wrap up our information about Aphasia today, we have some key takeaways, some points that we’d like you to remember. We’d like you to remember there are resources and services available for people with Aphasia. They do not have to remain isolated; that’s what the NAA is here for. We need increased awareness of Aphasia. It’s so important that we get more public awareness of Aphasia. We need you to help us to advocate, whether you’re a professional or a person with Aphasia or a family member. We need you to join with us to advocate.
We definitely need more research in Aphasia, and we also need to come up with some more reliable and validated Aphasia clinical practice guidelines. And of course if we use some innovative speech language therapy combined with technology, we can open up all-new opportunities for communication and people with Aphasia can continue to improve and continue to communicate throughout their lives. So I think that brings us to the end of this portion. Now I’m going to have Derek talk to us about how people can ask some questions.
Derek: Great, thank you Ellayne. We will now open the webinar for questions and answers, and if we look at the panel that we have, we have to have at least 50 years of experience working with Aphasia and adults with disabilities. So we have a great panel. If you have any questions, please enter those questions into the GoToWebinar panel by clicking the arrow on the GoToWebinar panel and entering your questions. We encourage you to share any tools, experiences, thoughts, insights. If you’re living with Aphasia, you’re a family caregiver or a healthcare professional who has experience with Aphasia, we’d love to hear your questions, comments and feedback for the panel. So while we compile your questions, Chris, I’ll hand the moderation of questions over to you. Thank you.
Chris: Great, thank you Derek. And we already have some questions coming in quickly. So Ellayne, I’ll throw the first question to you. This comes from Elizabeth Conti. Do you feel that an SLP should be involved early on with a patient or client who has a diagnosis of mild to moderate Alzheimer’s Disease or Dementia to preserve skills and maximize skills while they are still highly functional, delaying primary progressive of Aphasia?
Ellayne: So the answer is a resounding yes, and coincidentally we just . . . we’re completing a webinar series on Primary Progressive Aphasia for the SLPs. We just did one today as a matter of fact before this one. So if you’re interested or anyone’s interested, those webinars will be archived. You can access them by contacting us at the NAA. They’re free, and that will give you even more specific information about tools for the SLP and PPA. But absolutely. I think prior to this, people with PPA were not thought of as being a good target for intervention but we are learning that early on and even through some of the later stages, there’s many things that the SLP can do. And so we need to make sure that they get referred to an SLP.
Chris: Great, thanks Ellayne. Awesome question, Elizabeth. Second question from Zipora Levee Shockerford. This is for you Ellayne as well. Is it still considered Aphasia when a child does not develop speech and has cognitive delays from a development or other disorder such as autism or down syndrome?
Ellayne: So that’s not exactly Aphasia. They’re other disorders. You’re talking about autism or down syndrome so they have other disorders. However, there is Developmental Aphasia, something called Developmental Aphasia. That will occur if a child has suffered damage to the brain in the language area either in-utero or prior to the age of acquisition of language. So if the child, before the age of three, has either had a stroke or brain injury then we call that Developmental Aphasia. In other words they didn’t have language then lost it, but they’ve never developed language. And that is still considered an Aphasia. A child that’s diagnosed with autism or down syndrome definitely has communication impairments, but we don’t consider that an Aphasia.
Chris: Great, thanks Elizabeth. Great question Zipora. Derek, I’ll toss this question to you and this comes from Chastity McDermott. Will the slides and other information from the webinar be available later and if so where can we go?
Derek: Absolutely. If you’re a registrant of the webinar, we will send out a follow-up email communication directly to you with the recording of the webinar and all the tools and the links to the tools that Ellayne walked through. Typically that will come out within about 48 hours after the webinar, so we’ll make sure to deliver all those directly to your inbox.
Chris: Great, thanks Derek. Another question from Mirov Ravey, and Ellayne if you can take this question, it’s hi, I am an SLP from Israel.
Ellayne: Yes, I know.
Chris: I work at the Adler Aphasia Center in Jerusalem. Welcome Mirov. This is an international webinar.
Ellayne: And I’m glad that Mirov is able to stay up because it’s seven hours later there.
Chris: Wow, so great question here. As the only center in Israel for people with Aphasia in the country, Mirov is wondering how you help the younger people in getting started with their lives in terms of learning a new occupation, having a relationship, living on their own, etc.
Ellayne: That’s a great question Mirov and something we work to do every single day. I think that having people get connected to other people with Aphasia, the social aspect is really important. I know here we have a lot of young people with Aphasia who communicate with each other and share their experiences and so that helps to be the support network. We do need a better way to train people to have a vocation and go back to some kind of work. Your center, which is the only one I know in Israel and we don’t have too many people here. We have people here in the US, rather, there are some centers, but for the United States we maybe only have 35 or 36 Aphasia centers which is not nearly enough. That’s a place where people can learn how to get back into their life.
But becoming involved, getting the young person with Aphasia to become involved in their own advocacy is also important for them to get back into life. Helping them to go out and help explain about what Aphasia is. We provide some of those programs and tools where people can do that. I think that’s a great way for people to start to connect back into the community.
Chris: Great, thanks again Mirov and again welcome from Israel. Thanks, Ellayne. Final question, when individuals with a stroke are discharged and return home, what transitional care issues may result in readmission and what supports do family members need during this time? So Ellayne if you could take the first part of the question, and Dan and Barbara, it’d be great to hear your thoughts around supports that family members need during that time of discharge.
Ellayne: Well, when people are discharged, it depends. First of all it depends on where they’re discharged from. Obviously if they have physical issues in addition to Aphasia, they will likely go to a rehabilitation hospital, a rehabilitation setting, and be discharged from there. So those people we hope will have less opportunity for readmission because they will have had more time in terms of improvement and also medical stability.
What sometimes happens when a person just has Aphasia and they’re discharged home directly from the acute care hospital, they may in fact be readmitted because they have some other medical issues. It’s typically not going to be the Aphasia that will readmit them, but because of the stroke or brain injury involved some kind of medical problem and we don’t know exactly what may have caused it, it’s likely that they may have some other medical issues that causes them to be readmitted. I think it’s important either way when the person goes home for them to be closely monitored for any changes in status so that you do contact your physician if you do see any changes.
Chris: Great, thank you. And Dan and Barbara, just your thoughts around the type of support that a family member person and a family member might need when they’re discharged from the hospital?
Dan: Yes, it’s much more than you think typically. You get home and there you are sitting in the deafening status and really asking now what? The first thing that comes to mind to me is to get a copy of the Aphasia handbook which the NAA has created and has available. That is a very, very useful resource tool for people who are just kind of scratching their heads and wondering where to go next.
The second piece of advice I would give is do not try to close yourself off; do not go inward. Go outward. Pick up the phone and call everybody you know who has had some sort of similar situation or experience or knows somebody with it. There are a lot of people out there. Stroke and Aphasia are very much more common than we suspect. So reach out to other people and you will be surprised how much advice they can give you and how much somebody knows somebody else who knows somebody else who can put you in touch with someone who will be of help. And lastly, I hope Ellayne doesn’t kill me, I would call the NAA.
Ellayne: Absolutely, and I think we’re going to be giving our resources at the end anyway so thank you.
Chris: Absolutely. Thanks Dan. If everyone is okay we will go a few minutes over because some of these questions and comments are just tremendous. Just a quick story from Dave Henders, one of our franchisees on the west coast. My mother had a stroke which resulted in her having the tip of my tongue type Aphasia. I don’t believe we were told the name of the disorder. My mother was frustrated and embarrassed when she could not make us understand. Quite often what came out was humorous. At first my siblings and I did not know how to react. After a while we would just laugh. Mother understood that our laughter meant we understood and it was all right. I believe a sense of humor is important. So Dave, thanks for sharing that.
Chris: A question from Heather Tomlinson to you, Ellayne. Heather is saying I would love to be mentored in how to start a National or Provincial Aphasia Association here in Canada. Again, welcome from Canada. Is there anyone in the NAA who would be willing to dialogue with me about how to do that?
Ellayne: It’s going to be me and I’m happy to dialogue with you, Heather. There’s actually some resources already in Canada. There is not a national organization but I am happy to speak with you at some other point about that. I appreciate your interest in it.
Chris: Great, and thanks Heather. Thanks Ellayne. A statement from Ashley Kidd, I’m a student studying speech pathology and I’m currently involved in an Aphasia group this summer working with people with Aphasia in a more social aspect. I really find working with them in a group is really helpful. They get to see how Aphasia affects other people and they help each other communicate. I was wondering how you feel about this type of therapy?
Ellayne: Totally supportive. Actually that’s what we advocate for everybody is to be involved with the group, and in fact some of the groups are not even . . . I guess Ashley is talking about a group that’s more a support network. Some of them are just for support, but many of the groups are communication groups as well so they actually are more intervention-based. But groups are the most wonderful form of intervention and actually people can start with groups very early on. Lots of people think that you can’t go to a group or you shouldn’t go to a group until you finish your individual treatment, but that’s not true because you need the support and also sharing the experiences. So look for a group. And also for the family members. Even if the person with Aphasia can’t participate in the group then the family members can. You’re getting a great experience now as a student.
Dan: May I cut in with just one additional comment to that?
Dan: Barbara has been running a support group, a conversation support group for the last 20+ years. And anybody from a dozen or so people, and she’s got people in that group, some of whom have been going there for 15 years all the way from people who are fairly articulate and affluent to people who can only repeat one or two phrases over and over again. The key is to not be embarrassed. Everybody’s been in the same boat. Not to feel that you’re odd or out of place. The person with Aphasia must be made to feel comfortable with peers.
Chris: Great, thanks Dan. Ellayne, Mirov just wants us to call out that there is a stroke and Aphasia handbook, a book that’s been translated into Hebrew and Arabic that has really helped with their lives and understanding Aphasia. They find it to be a great resource.
Ellayne: Actually, yes, thanks Mirov. It’s actually our Aphasia handbook, the stroke and Aphasia handbook that we have here in the US that came from the UK and now yes, it’s been translated into Hebrew and Arabic. So that’s fabulous that you have that available.
Derek: And Spanish.
Ellayne: We’d love to have it in Spanish.
Chris: Great. So we’ll share one more comment, and again I want to thank everybody for great, great questions and comments. This is from Colleen Davis. I have a patient who had a stroke. At the time of discharge, all she could say was corny day. That is how she answered everything. I hadn’t seen her for a while then she came back in. I went to see her. When I went in the room, her face lit up and she yelled corny day. I cried. She knew exactly who I was. We talked for a few minutes and I knew exactly what she was trying to say to me. Though her answer to each question was corny day, her facial expressions were incredible. Others laughed and said I cannot believe you talked to her all that time. So again, all this is incredibly moving and really attributes to people with Aphasia and their courage. Thanks for that, Colleen.
Ellayne: And that’s why we do what we do every day.
Chris: Absolutely. So on that note Ellayne, I know you’ve talked a bit about NAA and services but just again another opportunity to talk about your help line number and all the services that you’re offering.
Ellayne: Absolutely, thank you. So please, anyone on the webinar feel free to contact us at the NAA. You have my email as well as my phone number and we also as I said have an 800 number. We have lots more resources and information to share with you. You can become involved with us. June is not over yet so there’s still a couple more days to celebrate National Aphasia Awareness Month and think about maybe educating one or two people today about Aphasia. You just listened to this webinar; go out and tell a couple people about Aphasia. That’s how we’re going to raise awareness. It’s going to be through one person telling another and another. It’s been my pleasure to be part of this and I want to thank Griswold also for supporting and spreading the word about Aphasia during this month.
Derek: Fantastic. And Ellayne, thank you likewise. And Dan and Barbara, thank you again for your courage being here on the call. It’s a fantastic experience having both of you and thank you for your time. To all the audience, thank you for attending this webinar workshop brought to you by Griswold Home Care and the NAA. Griswold Home Care is a national home care company which refers professional care givers that assist older and disabled adults with personal care, home making and companionship services. Our founder, Gene Griswold, wife of a Presbyterian minister, founded Griswold Home Care in 1982 after being diagnosed with multiple sclerosis. Griswold’s commitment to quality care that is affordable while also at the same time elevating the professional of care giving continues today with over 260 territories throughout the US. Care coordinators can be contacted 24/7 for advice and direction to families in need by dialing our 800-GRISWOLD number. Again we want to thank our panelists, especially Ellayne, Barbara, Dan and Chris, and our audience.
For more information, please review our Aphasia Resources.