Summary from the Aphasia Community Event!

This year’s Aphasia Community Event (ACE) was held on April 20. This was a great event full of fellowship, fun, and of course, food. We were honored to have Dr. Audrey Holland talk to us about living well with aphasia, and our panel of speakers offered wisdom in the recovery process.

Below, you will find a summary of the event, including notes from Dr. Holland’s speech and discussion from our panel of speakers.

Introduction and Keynote Speakers:

  • Leigh Ann Spell, Associate Director of the Aphasia Lab and Speech-Language Pathologist
  • Julius Fridriksson, Director of the Aphasia Lab and the Center for the Study of Aphasia Recovery (CSTAR, http://cstar.sc.edu/ ), Speech-Language Pathologist
  • Audrey Holland, Regents’ Professor Emeriti of Speech, Language and Hearing Sciences at the University of Arizona, Speech-Language Pathologist

Welcome

Dr. Leigh Ann Spell

Dr. Julius Fridriksson

  • We finished our brain stimulation clinical trial
    • Many of you participated in this – we put electrodes on your scalp!
    • Goal: to understand whether we can improve aphasia treatment outcome by providing brain stimulation at the same time as speech-language treatment
    • A positive trial! J
    • Data showed: adding brain stimulation during therapy = improved outcome of the therapy for people with aphasia
  • Looking at how participants have progressed over the years
    • Many of you have come to the lab a long time and have done multiple language studies
    • We went back and looked at language scores from way back until now
    • Want to understand: Do people with aphasia just stay the same?
    • Many of you have heard if you don’t recover after 1 year, you won’t change
  • What we found with our data:
    • ½ of people we studied kept getting better (we have data from a group of 40 people)
    • ¼ stayed the same
    • ¼ got a little worse
    • Most people tended to get better
  • What makes you keep getting better?
    • Our data suggest: the number of therapy hours is the best predictor of those who improve
    • More therapy = better long-term outcome
    • You can get better at any age
    • Recovery and improvement can be slow—marathon not a sprint!
  • CSTAR website (https://cstar.sc.edu/ )
    • We have a blog where we explain, in layman’s terms, the results from our studies
    • You can read the results of these and other studies there
  • Now to the very famous Dr. Audrey Holland!
    • I was lucky to be her PhD student
    • I did my PhD and came to USC in 2001
    • Holland has been the authority in aphasia for a very long time
    • She’s a retired professor
    • Active lifestyle, involved in research and community groups for people with aphasia

 Keynote speech: Living Well with Aphasia

Dr. Audrey Holland

  • I am going to talk about living well with aphasia
  • No two people with aphasia have language and lifestyles that are alike
  • This talk is about 12 people who did more than survive aphasia, they moved on
  • This is what I have learned from them and how people live well with aphasia:
  1. Acknowledge that they had aphasia
  2.   Hope isn’t mine to give nor is it mine to dampen
  3. I learned that resilience is really important
  4. Getting one’s groove back is also important
  5. Looking outward is important
  • I will talk about each of these more in depth:
  1. Acknowledgment is the first step.
    • Recognize and accept that aphasia is not going away.
    • People continue to get better but aphasia never goes away.
    • That doesn’t mean give up. It means the opposite.
    • Making peace with it.
    • Living around it and with it.
    • Mike had a stroke
      • Wanted to find the best aphasia therapy in the country
      • Hired an investigative reporter to find the best therapy options in the country
      • He and his wife, Elaine, created the Adler Aphasia Center
    • After 30 years of aphasia, John was still seeking and receiving benefits from therapy
      • He doesn’t give up
      • We met when he was 25 years post stroke and hadn’t gotten his drivers license back
      • He left a phone message saying, “Driving, driving, driving!”
      • The point- making peace with aphasia takes time
    • Peter had been depressed for a year following his stroke
      • He was an interior designer- very successful business
      • Even though his doctor said no, Peter decided to go back to work
      • His depression lessened when he went back to work
      • The depression lessened over the course of 2 years
      • He was living a good, if quiet, full life 10 years later
    • Clyde, a case study in acknowledgment.
      • Came with his wife to the clinic.
      • He had already developed a fairly full life with family, friends, church
      • I wondered why they were coming.
      • He was so well-adjusted.
        • Well, one day I was down in the waiting room, and his wife came by and said “I am so glad we come to this clinic,” and I said, “why?” and she says, “Well, Clyde has somebody to talk to now.” I said, “but he has you!” and she said, “we said it all 20 years ago!”
      • What else have I learned about acknowledgment?
        • It is difficult to define.
        • It is very active.
        • Clinicians cannot hurry this.
        • It is influenced by many other factors like health, motivation, life style.
        • It isn’t inevitable
        • It does increase the likelihood that one can live well with aphasia
  1. Hope isn’t mine to give or to dampen.
  • The inevitable questions of people with aphasia and their families: What is recovery going to be like?
  • What’s the outcome? When is this over? When will I feel like myself again?
    • These are questions about hope
    • The natural course of recovery is forward improvement
    • As Julius said, improvement goes on and on and on.
    • You need to look at the big picture, which includes the intangibles: motivation, growth, learning styles and attachments
    • Hope is complicated by what the doctor says.
      • What they tend to say can range from dismal to dismissal
      • The range of reactions to all of that information range from devastation to challenging
    • So, what do SLPs do?
      • I think that what I have done to answer the many questions about recovery is to say “I don’t know.”
      • Help people to develop their own set of alternatives about it.
      • Don’t get hung up on hope’s evil twin, false hope.
      • Viktor Frankl made observations while in a Nazi concentration camp: those who held onto hope were the people who survived the longest.
    • Hope is: a buffer, a tactic, an anchor and a very important thing for people with aphasia to understand.
    • Let me give you a little lesson about hope.
      • I was giving a talk to a group like this, with people with aphasia, clinicians, family members.
      • We got off on this question during the workshop – about how much recovery can happen and so forth
      • Clinicians were sort of saying… well, you know, we don’t know
      • People with aphasia were chiming in and families were chiming in
      • Finally, one of the wives stood up and said, “I have had enough of listening to you SLPs. Just forget it and leave the question of hope to us.”
      • That was like… “ah ha!” What a relief. That’s it.
      • You and your families can well take care of that, along with the good clinical things/programs that you are very much a part of.
    • All of these 12 people expressed hope in some ways.
      • Religious faith; doggedness; belief in therapy; reclaiming their own strengths; rising to the challenge… on and on.
      • But, not because us professionals knew how to play the hope card
  1. Resilience really matters.
  • Resilience is the ability to bounce back after adversity
  • It is a key ingredient that has been linked to longer living; recovering quicker after heart surgery; lower likelihood of depression; etc.
  • Here is Isabel
    • I spent some time in her house, observing her and her family
    • Isabel had a very severe right hemiplegia (paralysis)
    • I was at her house at breakfast time
    • She had three perfectly able-bodied children and able-bodied husband and there was Isabel slicing bagels for breakfast with significant hemiplegia
    • I was just observing, but then I said, “Why don’t you guys help her?!”
    • And she looked at me and she said, “It is MY job!”
    • That’s enough of that, I said to myself. That’s resilience at work
  • Dom owned a restaurant but he couldn’t keep owning it after his stroke
    • He sold it and applied to the person who bought the restaurant to be a dishwasher because he still wanted to be involved. That is resilience
  • A nice thing about resilience and optimism
    • Both can be increased and learned
    • A lot of you people have learned to be resilient as a function of your stroke
    • SLPs – look for resilience; guide it; use it
  1. Getting one’s groove back is a good idea.
  • The World Health Organization made it very important to think about getting our groove back, participating in society again
    • Hard for people with aphasia than other disabilities because of the importance of talking and communication to social interaction.
    • If your language is compromised, it doesn’t equal an inability to participate in society
  • Harry is a great example of resilience – his wife, too. “We are back to normal… it is just a different kind of normal,” they said.
  • Alice’s husband said, “We’re not having THAT retirement; we’re having THIS one and it is just as good.”
  • Getting your groove back… remember Peter; he went back to work
  • Martha went back to nursing and living her life even though she was aphasic
  • Isabel became a painter and her husband once said, “I didn’t know who I married until she had her stroke.”
  • Maybe it is getting a new groove:
  • Harry became a gym rat. He hung out there all the time
  • Sam turned into a traveler and his big problem was not about speaking… rather, he was worried that he might be cheated because he couldn’t count money. So, his therapy was based on using credit cards, making change, etc.
  • Liam, who was always an avid golfer, started golfing again
    • He’d say, “playin’…. old guys… didn’t even know I had a stroke, I beat ‘em!”
    • Liam also volunteered at the hospital
  • Roger- persistence in the face of his very serious aphasia.
    • He started aphasia groups all over Phoenix (Arizona) and he would let clinicians go to his aphasia groups
    • He wanted people with aphasia and families to get together
  1. Looking outward counts.
  • Looking outward involves humor.
  • Nothing’s more powerful than a good laugh.
    • Aphasia groups- full of laughter
    • Looking beyond one’s own tragedy is difficult but crucial
    • All of these people pushed the envelope of that – Some are even the cheeriest I’ve ever met.
  • Relationships count
  • Much has been made of family support and it travels in many forms… from gregariousness to religious faith
  • All of these people had some form of attachment in the world
    • Conventional family support; friends; clinicians; religion
    • Friendships, other relationships
    • I can see people out here, I heard people out here talking before this, I know you were sharing with others and that is so good
    • Attachments to the bigger thing
  • The bottom line – there are various ways to getting back to life
  • These are the stories of my role models
  • These are the stories I like to share with others; with people who have aphasia

Follow-up Remarks

Dr. Julius Fridriksson

  • I realized I forgot some things:
  • Exercise, especially aerobic exercise, prevents disease
    • Decreases the odds of a second stroke
    • Study showed: the people who exercised the most recovered the best
    • I encourage you to exercise regularly.
  • I encourage you [people with aphasia] to teach our students not just about what it is like to have aphasia but also teach them what aphasia is.
    • I hope that you give back and teach those students what aphasia is.
    • There are over 2 million people who have aphasia worldwide
    • We need to teach these clinicians and students what aphasia is
  • Thank you.

Panel Discussion

Panel Members:

Dr. Dee Gulledge (www.artsasmedicine.com), wife of stroke survivor with aphasia and bereavement specialist

Karen Tucker, past President and CEO of the Adler Aphasia Center

Dr. Audrey Holland

Mr. Marcus Ryninger, stroke survivor with aphasia

Mr. Frederick Lyles, stroke survivor with aphasia and 2018 Ambassador for the  South Carolina Speech-Language-Hearing Association (SCSHA)

Dr. Leigh Ann Spell

  • The first person I’ll introduce is Audrey Holland who you already know
  • Next is Karen Tucker, former CEO and President of the Adler Center for Aphasia
  • Dee Gulledge is the wife of someone with aphasia and also works as a therapist in bereavement.
  • Marcus Ryninger is a person with aphasia. He and his wife have been to my classes at USC to talk about aphasia and living with aphasia
  • Fredrick Lyles is a person with aphasia who came to participate in our studies from the Greenville-Spartanburg area. Frederick was awarded with the 2018 Ambassador Award from the South Carolina Speech-Language-Hearing Association
  • We will have them go around and introduce themselves and tell us about their personal connection with aphasia. We will then open it up to questions from the audience

Karen Tucker

  • I’m a social gerontologist who worked at the Adler Center for Aphasia
  • I’ve learned a lot about aphasia working at the center for many years.
  • I started with Mike and Elaine Adler.
    • They are very motivated,
    • They never said no,
    • Thankfully Audrey Holland was our director.
  • We had over 100 people who came to the center twice a week to participate in groups—acting, sports, music, whatever people wanted to communicate about we did it.
    • We called ourselves a hope center.
    • We had ages from 20 to 92.
    • And they did improve.
    • It was such a rewarding job and I hated to retire.
    • But I got to move to Charleston, SC I love it there.
  • I hope in the future we see what you’re doing in Columbia in Charleston.
  • I am just in awe of how you people continue in your lives and motivate each other—that’s what will heal you.

Dr. Dee Gulledge

  • My experience with aphasia started in August, 2016.
  • On August 8th, my husband had a stroke.
    • Very severe.
    • We were not even sure he would survive.
    • But we are here today making progress never giving up continuing forward
  • The work that I do professionally also relates to this area because it is loss and grief bereavement.
    • I am often referred to as a thanatologist.
    • A big word but it is the study of death, dying and bereavement.
    • Our daughter died in 1990 and that was the beginning of a different life for us.
  • Symbolism: the mosaic project is similar—using the arts to help with healing.
    • And also reaching out and offering to help others.
  • My symbolism is life as we knew it, when it was whole.
    • And life that can shatter in an instant.
    • Our job then becomes what do we do with the shattered pieces.
    • Sorting through them it takes time
    • We can put things back together in a new way.
    • Never the same but still can be good and in a different way.
  • So, I advocate helping encouraging supporting activities, the physical activities, the arts the drama, the dance.
  • And I teach tai chi as well and so it is just getting in to those things and getting out and willing to try something new and having family and friend supporting.
  • It takes a village.

Dr. Audrey Holland

  • I don’t think I have much to add from earlier.
  • But I got interested in this area when I was a freshman in college because one of my dearest friends suffered from a head injury due to an automobile incident.
  • He didn’t talk the same or walk the same after.
  • And it took me until the end of graduate school to realize that he didn’t have aphasia but had a cerebellar problem.
  • By that time, I was hooked.

Mr. Marcus Ryninger

  • A little bit about my story: I had a stroke in May, 2015.
    • For the first five days I couldn’t move or speak.
    • So, after that, I went to rehabilitation.
    • If you had a stroke, you go to a rehabilitation hospital right away.
    • I had some treatment and shortly left.
  • Then, we decided to sell our house and move to SC (it looked warmer!) and in July, we moved to SC.
    • In February, I started some treatment for aphasia.
    • It greatly moved me.
    • At first, I couldn’t say anything.
    • Now I can talk for a long time.
  • I’ll talk to whoever now and got in a support group—it helped me a lot.

Mr. Frederick Lyles

  • My story I want to share is I had a stroke at my job 3 years ago
    • I am a stroke and aphasia survivor.
    • It took a while to get used to the process of what this condition is so I tried a bunch of different rehabs.
    • I went to Charlotte, Greenville, Raleigh.
    • I was driving three hours on Mondays and Tuesdays so I drove about 6 hours those two days.
    • I kept trying to find ways to improve my speech and improve my communication.
  • My neurologist introduced me to this program here at USC… when I started the program, I have really improved my communication skills.
    • I was able to talk to people.
    • I was hesitant to talk to people—like judge me on what I would say or how I would look.
    • It messed with my confidence level but due to my belief in God he has blessed me to where I am today.
  • I thank my parents and this program I have joined.
  • It has been a true blessing. So, thank you.

Audience question: Why do different people have different problems after a stroke?

 Dr. Audrey Holland

  • The brain is a very complex organ.
  • The connections between the pieces of the brain have been damaged
  • Damage is slightly different in every case.
  • Not just the location of damage, but the connections
  • It seems to me you’re quite right, why doesn’t everyone sound the same?
  • If you look around, we don’t look alike in our faces.
  • But in some measure, we are not quite alike in our brains as well.
  • I don’t know if that’s a satisfactory answer but it calms me down.

Audience question: What drove you to seek services after therapy was over?

 Mr. Marcus Ryninger

  • I wanted a normal life.
  • I wanted to get the way I was before—read, talk. I wanted to help.
  • Also, I feel good about the people around.
  • They help me.
  • Every time I talk to them, I think I can do that.
  • So, it helps.

 Mr. Frederick Lyles

  • Resilience was my main factor that helped me get here to USC.
  • The people who treated me with respect and encouraged me.
  • That really helped me.

Audience question: A general question about grief, when you’re dealing with a stroke and been in the hospital and lucky to be alive and language is the last thing people talk about. Can you talk about grief a little bit more—like we should be happy to be alive. But how have you seen it manifest in different ways and what do you recommend for people who are still living with it and their families?

Dr. Dee Gulledge

  • From the grief perspective, when a stroke occurs in life, it indeed is a loss.
  • The loss multiplies with many layers of loss.
  • Not only for the individual but for the family as well.
  • We can’t do things in the same way like we did them before.
  • Things are different, but don’t give up
  • But having acknowledgement of the loss and experiencing it and realizing that life has changed but rebuilding and restructuring life to where you are now.
  • Your 100% before the stroke is different from your 100% after stroke.
  • Almost like starting a game at 100% from a different place.

Follow-up question: everyone from our family is on a different stage of grief. That’s when it seemed to get very tricky that I noticed.

 Dr. Dee Gulledge

  • Grief is tricky.
  • It is not nice and clean.
  • Almost like playing in a mud puddle.
  • Maybe a mud puddle on the left or right or you jump right in.
  • I tell people very often who experience great losses.
  • There’s that “woe is me” feeling
  • My philosophy is: you can have a pity party for five minutes but then it is time to get up and do something nice for someone else.

Audience question: after your sessions were over, can you recall any special thing you wanted to do at home that made things better for you?

Mr. Marcus Ryninger

  • Family is important.
  • And trying to do the things you did before—do them again!
  • If it hurts, try it again.
  • If it doesn’t work, try something different.
  • You can’t stop living.
  • If you see something’s wrong, try again, call family, friend, neighbor. “Hey, help me.”
  • At first, I couldn’t speak or write.
  • Now, I can read, but I still can’t write very well.
  • But, my wife helps me.
  • You need help.
  • Try every day.

Mr. Frederick Lyles

  • When you can’t do something, prove them wrong.
  • Also, like Marcus said, have a good support group.
  • Like when you try to say words, don’t let them help you.
  • They can figure it out.
  • Keep challenging yourself.
  • When people are talking, I pretty much listen to people’s words and repeat them in my head to myself.
  • Also, go to the web or a dictionary and look up the word to see what it is.
  • Also, there are different apps you can use on your cell phone.
  • Have confidence in yourself and don’t give up.

Audience question: many people are involved in group therapy. What’s the difference between that and individual therapy?

 Karen Tucker

  • The ah-ha factor: “ah I’m not alone”.
  • Most people think they’re the only person with this problem.
  • Step one is finding out you’re not alone.
  • Step two is being patient.
  • Having the patience of the therapist and all your friends there helps.
  • The more you try, the better you do; the better you do, the better you feel.
  • When the group members saw others trying, it made them feel better.
  • We never correct anyone.
  • You listen and you figure out what someone is saying.
  • When people get that kind of feedback and react to it, they see that’s part of the healing.
  • I only know what I know from groups and I think that’s very, very important.

Audience question: What advice can you offer to someone who wants to be an SLP to work better with people with aphasia?

Mr. Frederick Lyles

  • For me, having patience with the person.
  • You have to have a lot of patience.
  • They’re going to really try you a little bit so you have to be patient.
  • That’s my main suggestion.

 Mr. Marcus Ryninger

  • I am a happy patient.
  • So, I try everything. Be patient!
  • We might not get it the first time, or the second, maybe a month.
  • Keep working.
  • It’s a long road, so be patient.

Dr. Dee Gulledge

  • Letting the individual know that they are important,
  • That they matter and are trying
  • That personalized care and attention has been huge.
  • I cannot say enough thank you’s to the USC leaders, professionals, and students who have been in our lives.
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