Author: Anonymous

I believe your foundation will play a role in improving the public’s perception of this affliction that most people have no idea exist’s. Due to neurosurgery I became afflicted with aphasia. Ten years ago I had a temporal lobectomy to improve my epileptic condition. The surgery was effective, however I was left with a severe case of aphasia. My surgeon conducted tests which indicated that I had two speech centers, one sight in the left and the other in the right temporal lobe. The sight of my surgery was the left temporal lobe. I am left handed so I believed that my dominant lobe was the right. I opted for the surgery. After thirteen hours of neurosurgery in which I was wide awake to enable the surgeons to find my speech center, the surgeon removed leasons that were within an eighth of an inch of my left speech center. The surgery was a success but I was initially left with severe aphasia and dyslexia. After receiving therapy my condition has improved enormously. However, when I initially returned to work as a credit analyst for a bank in the fall of 1980, I could not read due to the dyslexia, consequently I copied other bankers work. This condition improved to a point wherein I was able to apply for a position as a bank examiner for the Federal government. Hopefully my personal experiences may give another individual who has similar afflictions the encouragement to patiently work on with the belief that his/hers aphasia can only get better through a little fortitude.

Fun Things are Still Possible

Author: Judi Stradinger

John and I just returned from a fabulous 14-day vacation. Our first real vacation since John’s stroke six years ago—I don’t know why we’ve waited so long! I had to be sneaky to get John to agree to try so I proposed a trip to Alaska to revisit Ketchikan—this is where John had spent 3 months prior to his senior year at Texas A&M. Then I added the Canadian Rocky Mountaineer train ride, Jasper, Lake Louise and Banff areas to our itinerary! It was great having the Canadian Rockies tour first because we got to know 37 wonderful people before we departed on the Dawn Princess for the Alaska cruise with 1850 passengers.

John loved visiting with the 37 new friends from England, Ireland, Australia, Tasmania, and some Americans during the bus ride, train rides, snowmobiles, and even a float trip! These travel companions would ask me, “Is John going to do the float trip?” I would say, “Yes”. Then they would say: “If John can do it, so can I!” At the end of the land cruise we had our last dinner together before getting on the ship. Our cruise director who had been fabulous with John by encouraging him to do all the side trips, made a speech. Rich said; “I would like to give a small gift to the person who has been like our spiritual leader for our group. He has brought our whole group together and made our tour very special. He then gave John a Rocky Mountaineer Railroad hat. There wasn’t a dry eye in the room…..

I wanted to tell you do some of the things you have always wanted to do. There are wonderful people on these tours who need to see that you can still communicate even though it might not be in complete sentences. John walks with a cane, but people did not seem to mind walking a little slower, just to be with John.

We also had wonderful assistance on the cruise. They are equipped with wheel chairs, ramps, and elevators. Our waiter would cut John’s meat each night and took time to wait on his speech for his order. All the crew was very helpful in every way.

So, what are you waiting for? Take that trip of a lifetime!

Spouse of stroke victim

Author: Judi Stradinger

How did this study called Crisis Care develop? My husband, John, had a stroke June 20, l995. Of course the support was wonderful at first. After five months at The Institute of Rehabilitation and Research in Houston,Texas, we came back to Greenville. We were hoping John could eventually work; and for the support we thought from “all” our friends here. Friends did come, but because John could not verbally communicate, would cry, and had trouble with his walking and balance, most did not come back. They would tell my close friends that they felt uncomfortable and that it seemed to really upset John to see them! When I would see people- their first question was: “How is John? He is one of the finest men I know. I really love him and I’ve been praying for him.” However, the whole time they would have this sad expression on their faces. I would say “We’re working hard, please come by and visit”. (But they didn’t come!) As time wore on, I became a little more aggressive in my answers to these “friends”. I would say, “John would love to see you, visit, go to lunch; or go for a ride to look at the crops!” Of course, what I wanted to say is,”Since you are not coming, I feel that you have abandoned or discarded John just when John needs you to be a friend” (which is what you claim to be!) Not only has John lost his speech, his job (which was for John, like most men, his identity because John loved to work 11 - 14 hours a day) he also lost the use of his right side -hand, arm, and leg. John had many friends because of working so many hours and being involved with the community and church. Now if friends don’t come, he’s lost his friends too.

John’s comprehension and reasoning ability consistently tests 80-90%. As some of you know, we have been to the Residential Aphasia Program (RAP) at the U. of Michigan 4 different times for 6 weeks sessions for John’s speech. (Dates: 9-9-96-10-18-96; 10-28-96-11-20-96; 2-24-97-4-4-97; 4-13-98-5-22-98). We have also gone to the U. of Wisconsin for two sessions (Feb. l7-21 97 and Aug. 4-8-97) to the Neuromuscular Retraining Center for his right arm, leg and his balance. John has speech therapy 3 days a week with Renee McRight and Emil Nick ( a neighbor who we did not know before John’s stroke) who comes to work an hour each day with John. Which brings me to one point - people who have come and ministered to John are people who have not been our best friends??? Most people assume that your closest friends will be the ones you can count on; however, these are the ones who say that it hurts them too much to see John like this!

After becoming angry, crying, and appealing to the people who had worked with John (with no results), I decided that the reason his friend’s did not come was due to their lack of education about aphasia. Most of the books on aphasia warn you that this normally happens to people with aphasia – they lose their friends. Pre-stroke John was President/CEO an able bodied man. However his friends have not seen him come from semiconscious state: bedridden to wheelchair - then walking with a pole to walking with a cane. Saying nothing, to now being able to say “things” if you give him time. I see him progressing where most people want to feel sorry for him and to think that this stage of his recovery is the best that he can be. However so much research is coming out now about the brain and its capacity to reconnect neurons that it will really be exciting to see what John can “get” back!!!! Instead of encouraging John by visiting and stating how he’s improving on his speech and walking, they don’t even come. They treat him like he’s dead. God has created our bodies and they are wonderfully made; however some strokes effect so many abilities in that person’s body that it takes a lot of hard, hard work to get it back. He needs others to tell him that all the work he does each day is worthwhile - not from just me and the boys telling him. John is reading 3 hours each day and working on crossword puzzle. Then John would read the clue and could eventually say the word, but then he could not spell it to put it in the squares. It would take us over an hour to do one. (Special crossword puzzles on 8th grade reading level.) About Nov. l997, we were working on one and the answer was “orbit” - I said John try to visualize what the word orbit looked like before your stroke - he proceeded to write by himself!!!!! o r b i t….Great Day!!!! Normally John’s improvements are slight and slow in coming and he needs others to tell him that all the work he does each day is worthwhile - Not from just me and the boys, but from his friends. Most of our friends are Christians, and I thought if Christians aren’t ministering to other Christians “why are we here?” We are here to fill in the gaps for people experiencing crisis in their lives.

Instead of keeping this inside me, I decided to share how I was feeling with Rick Ball, Min. of Ed. He said, “Judi, I ordered some material a month ago that I thought might meet some needs in our church called Crisis Care. I think it might address some of these issues you are expressing.” What an affirmation that the Holy Spirit had already moved Rick to order the material!!! When I think back to how I was before John’s stroke, I responded like most of our friends have done to John. I did not know how to respond to the situation. I Would take food, then say “If you need anything please call me”, then went back to my own busy life. I would pray for a week or so then I’d gradually forget my desire to help - since they didn’t call me I’m off the hook! This video series will teach you what to say and what not to say- what to do and how and when to do it.

REALLY it wasn’t until John was at the RAP program for the first time that his main therapist, Carole Pomilio looked at me and at John and she said “John you are not sick, you have had a stroke. NOW you need to get on with your life.” I was guilty of treating John like an invalid, because he certainly could not do many things like he had done before his stroke. This was wrong for John. He wanted to be treated like he was before his stroke. Not for people to look sad like “poor John”. John has his mental capacity - he knows exactly what you are saying and what your expressions say. Just because he can only respond with one or two words, does not mean he doesn’t understand. (Relate story -Paul Watson was sitting by John at Rotary and Paul did not hear what city the speaker mentioned and he asked the person on his left what the speaker had said and he did not know either. Then he turned to John and John said “Indianapolis!” About 5 years ago John and 7 of his Texas High School friends decided to get together twice a year - once for hunting and once for golf. Last spring he told them he would come by himself. He had the best time because they treated him like John, not like John “the stroke-aphasia patient”. He felt great and enjoyed his time with these friends reliving high school memories!!! His friends also emphasized how great it was to be with John again. He went back again last fall.

I hope you don’t feel that we feel we are unusual in the way people have responded to our crisis. I have talked to people with cancer and their response from people have been the same. Christian friends come with food but then because they don’t know what to say or do (during the long treatment time) they stay away. These people return, if there is complete recovery or death; but they are not there when you really need them. Most of us say we don’t have time, but really most of the time what John would like is for some one to call or come by for just 5 to 30 minutes. Because Helen asked me to talk to you today, I realize that educating friends and how they are to interact to a person with aphasia is another issue we need to address through our Aphasia Hope Foundation. Because of our experience, the boys and I have begun the Foundation to increase awareness throughout society of aphasia and of the effective long term treatments available for aphasia victims. Our son Joe has established our web site. A speech therapist, Marilyn Marshall, from Florida, called me the other day because she had seen our page to talk about aphasia. I said “You know some ‘friends’ say it’s hard for them to be around John now because he’s not like he used to be.” She said, “You tell those friends that John is ‘inside’ the same person, but because of his stroke his heart has ‘unfolded’ and now he is even more of a person!” She said that she has learned that “imperfection” makes you into the person you need to be. Perfection can sometimes mean that you are just a robot. She also said that you don’t find happiness “at the end of the tunnel-you find it along the way”. John is in that “tunnel” and friends which represent happiness can help him along the way to get to the end of his tunnel!”

Footnote about how this course has effected my life:
Just last week a friend who I have gotten to know because we are in a Bible Study together had a tragedy to occur in her family. Before this course, I would have wanted to do something and would have prayed for her and written a note, but I would have left her alone. (Have only been in house once and did not know them socially.) As soon as heard, I prayed about it, and then I went to her home. She answered her intercom. I said, ______ this is Judi S. and wanted to know if there was anything I could do. She said, “Judi, lift us up!” I said that I would immediately start our prayer chain and that I loved her. I hope this course will make a difference in your life!

Author: Pelagie M. Beeson, PhD., CCC-SLP

I. Create an Atmosphere Conductive to Successful Communication

  • Treat the aphasic patient as an adult.

  • Create an atmosphere in which the individual is encouraged to make decisions, offer comments, and communicate thoughts and desires.

  • Remember that successful communication is the goal, regardless of the modality or quality of the response.

  • Ignore the grammatical errors and poor articulation if you understand the message.

  • Do not turn “conversation” into “therapy” by correcting or requesting repetition unnecessarily.

  • Really listen, give undivided attention.

  • Keep distractions and background noise to a minimum.

  • Try to keep the communication situation relaxed, thus facilitating reactive utterances.

  • Seek and appreciate humor to lighten the communication interaction.

II. Maximize the Aphasic Patient’s Ability to Understand

  • Look at the person when you speak.

  • Speak slowly and clearly, but speak with natural intonation and loudness. Make the most of facial expression and tone of voice, without overdoing it.

  • Supplement your speech with natural gestures and pointing.

  • Have paper and pencil available. Write down key words from your message, or even sketch a picture, if it will help to get your point across.

  • Repeat and rephrase as needed.

  • Take your time.

  • Confirm that you are being understood. Ask simple questions to make sure. Determine if yes/no responses are reliable, then structure your questions accordingly.

  • Keep your messages focused, i.e., one message at a time. Simplify long, complex directions. Break into steps, if possible.

  • In a group, one speaker should talk at a time, and switch speakers slowly.

  • Change topics slowly, and with warning.

  • Ask for guidance or feedback from the aphasic individual. What helps the most? Does it help if I write some words?

III. Understanding Speakers with Aphasia

  • Be an attentive, active listener.

  • Be patient, and allow the individual to complete his or her own statements.

  • Do not routinely anticipate and fill in the end of statements. However, such assistance is appreciated in some instances. Be sensitive to the abilities and desires of the person. Find out if they want your help, or would rather have more time to finish the statements themselves.

  • Focus on what the patient is able to communicate, regardless of the modality (spoken, gesture, written, facial expression, vocal intonation, body language).

  • Confirm your understanding by a natural response or a restatement (or expansion) of their utterance. Try to do this in a natural conversation style.

  • When you don’t understand, encourage the use of gesture, pantomime, writing, and drawing. Always have a pencil and paper available.

  • Give the aphasic individual enough time to respond. Before you speak again, watch closely for cues that the individual may be thinking or preparing a response.

  • Observe and discern the communication strengths and liabilities of the talker. Rely on the strengths, and try not to let the liabilities get in the way.

    • If the individual produces few words, but they tend to be meaningful, then mentally fill in the “little words” to get the big picture.

    • If the individual is talkative, but lacking in meaning, listen and watch for the bits of information that emerge from the words, facial expression, and gesture. Ignore the nonwords.

    • Ignore the content of preservations (repetitive utterances) because they are likely to have little meaning. But attend to the way in which they are spoken, because that may convey meaning (e.g., agreement, disagreement).

  • Again, be patient and enjoy the exchange. Focus on what you so understand, rather than the communication failures.

By Pelagie M. Beeson, PhD., CCC-SLP, University of Arizona, September 1994.

Many people have been posting questions and answers in our forums/message boards section. See if someone is having the same problem you are or offer your advice to help someone else out! Go to AHF Forums!

Author: Judith Litvack

After his last stroke in Feb.2001 he has been paralyzed on the right side and has aphasia and apraxia. We have cried, laughed, struggled, fought, feared, and remained hopeful. Reality has now begun to settle in. He is coming home on June 15th 2001. How do we begin to adjust? Having him in care and me rooting him on every minute has now struck me with astonishment. The goal now is to adjust to this new situation. I find his personality and loving, gentle kindness still empowers us. Now comes the wake up call. He will never work again. Not that he won’t make gains but earning an income is not realistic. We have no health insurance and the government only provides 700 dollars a month for a family of four.
Oh, my god. How is this going to work out? ¨Panic¨ has set in. How are the children going to adjust? How are we going to manage? How do I start walking away and realizing that the new priority is supporting this family?

Author: John A. Liechty

“I have aphasia.” John A. Liechty does not hesitate to explain his deliberate speech. After a short conversation with him, sympathy changes to amazement and admiration for someone who has struggled against formidable odds to become an effective communicator.

John’s aphasia (uh-fay-zhu) struck in May 1978 when he was 32. With a newly acquired master’s degree in social work, he was anxious to begin a new position at the Family Cancer Center in Cincinnati, Ohio. He had spent a pleasant evening with friends, so he blamed the severe headache on the anxiety of beginning a new job. Unfortunately, the job never materialized.

The severity of that headache forced him to miss his first day of work. When he went the next day, the staff quickly saw that he needed medical help. He was immediately hospitalized. An angiogram revealed that John had a stroke caused by an aneurysm. John has no recollection of the immediate arrival of his parents, the ensuing surgery, or the close monitoring by the neurosurgeons and staff. He was in a coma and unresponsive to any stimuli. One therapist described him as a “wet noodle.”

John’s stoke was cause by the ballooning of the left cerebral artery due to pressure of the blood through the brain. The aneurysm affected the speech and motor area resulting in the loss of speech and paralysis of the right side. The aneurysm was repaired as soon as feasible.

“That was a hard time for all of us,” John says. “I gradually began to respond, but I couldn’t talk or move my right side or recognize shapes or colors. I had been right-handed, but now it was paralyzed. I couldn’t express myself. I was devastated. My future had collapsed.”

“After four months I was transferred to an intensive outpatient therapy program. During all this, I went into deep depression, anger, and thought of suicide. I had little interest in improving myself because I just wanted to escape. Where was God during all this? Why didn’t I die during surgery? I didn’t want to face life as an invalid. I wanted independence. I wanted that job! I wanted a healthy, fulfilling life and now all that seemed to evade me. Instead, I had no job, no life, and no motivation. I became angry at everyone, God included. I wanted to give up, but the therapists would not let me. Although I could not verbalize a coherent conversation, a spontaneous expression, That’s the ball game’ came out of my mouth at any inappropriate time.”

“I had always enjoyed singing, and the thought of losing that ability was another disappointment. During my time at Cincinnati, one of the orderlies took me, wheelchair and all, to a Cincinnati Reds ball game. Although I could not talk, when the National Anthem was played, I could sing every word! Singing is on the opposite (right) side of the brain so singing was not affected. The speech therapist used ‘melodic intonation’ on me. I could not say, ‘I am hungry’ or ‘I am thirsty,’ but when it was sung, I could repeat the words and the melody.”

Aphasia has two forms: expressive and receptive. Expressive is speaking words to convey thoughts and ideas. Receptive is understanding spoken or written words. Aphasia is actually a disorder of communication resulting from various kinds of damage to the brain which impairs a person’s ability to speak, comprehend speech, and ability to read or write. It is rather complex.

“By this time I was understanding my problem better and was determined that I would improve. After four months, I refused to use a wheelchair. In May 1981, I moved to Ann Arbor, Michigan, to attend the Communication Disorder Clinic at the University of Michigan.

“I was ready to reach out to other people and was hurt because they didn’t want to talk to me. Since I always enjoyed singing, I auditioned to sing Messiah which the community chorale was presenting. I practiced on the piano and was thrilled that this was finally something that I could do in a group. Then I got a letter of rejection. That hurt. The professor did not understand aphasics. Despite that, I had a good year in Ann Arbor. It was the turning point in my life.”

“In 1982 I moved to Goshen, Indiana, and became a janitor in a factory. Seven years ago I transferred to Oaklawn, a mental health facility in Goshen, and am employed in environmental services. Now I live independently and have my own car. My parents have been supportive and I appreciate that. They have allowed me the freedom to take risks but they were always there to energize and encourage me.”

“I enjoy driving a car, but driving in an unfamiliar place is difficult. Once I drove to the Palmer House in Chicago. By studying the map, I knew my route, but since my comprehension is impaired, I had difficulty reading the street signs. The second time it was easier. This is true of most things. With practice it becomes easier.”

“Since aphasia is a result of damage to the speech center of the brain, I can’t say what I want. It is extremely frustrating. I need to associate words. My father recently died of lymphoma, I couldn’t say that word until I used association. I think of a limb, foam, and oma. When I put the words together I can say ‘lymphoma.’ I couldn’t say ‘blackboard’ so I thought of a black board with a word on it. It is always confusing to say ‘kitchen’-I want to say ‘chicken.’ It takes practice.”

Recently John explained aphasia to a large group at a “family night” function at College Mennonite Church, where he is a member. The session was held during the same time-slot reserved for choir practice in which John sings. The practice was postponed so that the group could hear John. John says, “I am a good tenor and the choir is very supportive. I find God in music. I apologized to our minister who was in the group and said that I don’t understand his sermons.” He said, “That’s all right, John. Many others don’t seem to understand either.” We all laughed. At the close I directed, “The Lord Bless You and Keep You.” I had no trouble with that, but don’t ask me to say the words. That song has a deep emotional meaning to me because I sang it to my father as he was dying.

“Most people with aphasia have an option,” John continues. “They can face it squarely and try to do something about it, or declare defeat and vegetate. I am living proof that most people with aphasia can get better. Time is a great gift, but it takes energy to use that time well. One always has the desire to give up. Discouragement can be the real disability.”

In most cases, aphasia is a result of a stroke, but it can be caused by a head injury in an accident. One million Americans have aphasia. This total, which grows by more than 80,000 every year, is greater than the combined population of persons with Parkinson’s disease, multiple sclerosis, or muscular dystrophy. The location and the size of the damage in the brain determine which characteristics of aphasia and to what extent of damage the person will have. John continues, “People are surprised to learn that there are young people with aphasia. The cause of most of those is diving or car accidents. Most people don’t understand aphasics. If you want to help one, give that person plenty of time to communicate. Speak normally and directly and not too fast. Make eye contact. Ask yes and no questions. In tense situations speaking takes longer. Numbers are difficult for some, but comprehending some words may be just as hard. Some people find it easier to ignore me and talk to my companion. That makes me angry. I am a human being! They say, ‘You talk really well.’ That’s not right! I want to explain aphasia, but most people don’t want to deal with that. They will say, ‘Did you hear the Cubs won?’ or ‘How do you like the weather?’ They want to be polite but don’t want to mention the word ‘aphasia.’ Some people look right past me.”

John has made it his goal to use every opportunity to assimilate aphasics into the mainstream through mutual understanding of aphasics and their needs. He and a speech pathologist have organized aphasic support groups in Goshen, nearby Elkhart, and in South Bend. He arranges for aphasics to meet in informal settings as well as in planned seminars, and has talked to classes at Goshen College. John is on the Advisory board of the National Aphasic Association, and serves the Goshen Hospital as a consultant to patients with aphasia and their families. Attendance at major speech conventions gives him opportunities to display a booth and keeps him updated on advances in the field.

The local support group where aphasics get together and tell their stories and learn from each other is a major source of strength and motivation. John recalls, “Recently an 18-year-old who was injured in a diving accident joined our group. Someone had to help her with most of her words, but she wanted to sing all the time. She wants to be a singer even if she can’t communicate with words. One woman in her 70s had a stroke and tried to explain some of her tricks she uses to communicate. Finally she flung her hands in the air and said, ‘Oh, shoot? I can’t say what I want!’ that is typical of all of us. Too much concentration makes the problem more intense. It helps to find relaxing entertainment while you get your mind off the tension.”

John continues to work toward new goals. He says, “I want to continue my involvement with people. I want to gain more comprehension of language. I am excited about life in general. Lots of people have had strokes and died. Younger people haven’t had a chance. Some say I am a living legend, but I am not finished yet. I want to help people understand a bit of what is going on inside the brain. Period!”

Author: Roger Ross

I was always involved in international affairs-first at the Council of Foreign Relations in New York City and then as a specialist in the printing and publishing industries for 19 years in Rio de Janeiro, Brazil, and five years in Edinburgh, Scotland. Then we moved to the United States, and I joined a large company in Vermont. After a short time there, I established my own consulting business, and my wife and I decided to settle in South Orange, N.J., close to the great publishing center of New York City and close to Newark Airport as well. My work required me to engage in extensive foreign travel, usually about four or five trips to Europe, Asia or Latin America each year. A trip often involved my being away from home for several weeks. I became the mayor of the town (actually the title was “village president”), and the combination of work-private and governmental-in addition to the travel meant that I was working rather hard. Maybe that is why I had a stroke. In January of 1991, I was in the hospital for one week and then spent another week at Kessler Institute for Rehabilitation in West Orange. For one year I was an outpatient at Kessler.

In the beginning I went twice a week for physical, occupational and speech therapy. At first no one could understand me, although I did not realize that at the time. In less than two months, however, my progress was such that I could be understood and was allowed to drive. A few months after that I was able to discontinue occupational and physical therapy. My only remaining problem-a big one to be sure-was my limited ability to talk and write. I had two speech therapy classes a week-one was an hour with me alone and then there was a half-hour group session. The group was usually three persons plus the speech therapist. As I improved, one of the therapists suggested a support group in Madison, NJ.

When I went, I found it to be very disappointing. It was mainly a social meeting. There was a “program,” with coffee and cake, and people never talked. Three of us felt we wanted something more meaningful, and we started another group so that we could talk about our various problems. Soon there were five stroke survivors and, bit by bit, it grew. By the time I left, there were 20 of us.

The meetings were self-directed; we never had a professional therapist directing the meetings. The group also included some caregivers, who supported the group and contributed to discussions.

The group is continuing and going strong in 1996. Ultimately I realized that some stroke survivors need a social communication, for “coffee and cake” and to have a social atmosphere. But not for me. I stopped going to Kessler Institute after a year, 1992, so that I could devote more time to reading books. However, I did continue with the Madison support group.

About that time, one of my clients asked me if I would visit Mexico City to study the book industry there. I went for two weeks, and I took an assistant to help me. Normally after such a visit, it would take me two or three days to send off a report and an evaluation. With the assistant’s notes and my wife’s help, it took me a month to prepare the report.

While the report was fine, I realized it was not as good as it would have been before the stroke. For the first time I realized that I probably would be unable to go back to working, and my wife and I started to think about retiring.

In 1993 I was reading extremely well, and my speech was somewhat better. The writing was still zero. I wondered whether a computer would be helpful, and Kessler Institute suggested that I go to the Rusk Institute in New York City for further evaluation. There I worked with a computer, individual therapy and a support group.

The computer was not helpful. However, Ruona Bertaccini, my speech therapist for the individual therapy, and the support group, was excellent; and I developed new insight by working with her, even though it was only for four months. At that point, however, my wife and I had decided to move to Scottsdale, Ariz.

Bertaccini recommended that I contact Dr. Audrey Holland, head of Speech and Hearing Science at the University of Arizona in Tucson. Dr. Holland asked me to come down for some testing, and I started a weekly commute to Tucson (2 1/2 hours in the morning and 2 1/2 for return).

Dr. Holland and her colleague, Dr. Pelagie Beeson, invited me to join the individual speech therapy program and the aphasia group in 1994. I continued going to Tucson weekly for therapy and group support, and I have been doing this for two years now.

At the university there is an active group program involving approximately 35 aphasic persons and their spouses within this general framework. At the Speech and Hearing Clinic of the University of Arizona, there are at least six aphasia groups, largely grouped on the basis of similar language skills. Each group is led by a clinical staff member and a graduate student. It is unusual to have so many groups tailored for the specific members’ needs.

The members of my subgroup of the larger aphasia group all had their strokes on the left side of the brain, and we are all able to talk rather well. We also are all able to walk pretty well.

But it is important to note that I know from the other groups that I have started that it is possible to include participants who are severely impaired. In our subgroup there are currently six persons-five men and one woman-and a speech therapist, Dr. Beeson. We range in age from perhaps 27 to 77.

We have widely differing origins, natures and experiences. Given our diversity, one might assume that our conversation flits around, touching on many different subjects. But not so. We have only one subject. Each of us has had a stroke, and we talk mainly about how we have been changed by it. Our weekly session on Friday lasts one hour, and it seems to me always the shortest hour of the week.

Talking is the chief aim of our program, so we talk without ceasing. We push each other, trying to make sure that every member of the group says something. As this is not an idle conversation, we listen attentively. Talking and listening is how we help each other.

I was helped so much by Dr. Holland, Dr. Beeson and the other clinicians there that I decided that I should try for more therapy at home in Scottsdale. I started to work at the Scottsdale Memorial Hospital North for two days each week for six months, which was the period allowed by Medicare. As there did not seem to be a support group in the Scottsdale-Phoenix area for aphasics, the speech therapist and I decided to start one at Scottsdale Memorial Hospital North.

We sit at a conference table, and the speech therapist sits off to the side and helps only when needed for a special problem. The group conducts its own discussions, and caregivers are not permitted to attend the sessions.

After a year the group had 17 people, and we recognized that it was too large. We decided to start a second group, and we found a meeting place at the new Senior Citizens Center in Scottsdale. Since people were reluctant to meet at a new locale, I said that I would go and form the new group there. In my Via Linda group (named after a street in Scottsdale), the degree of speech ability is varied from someone who understands but cannot speak at all to someone who is very articulate. We now have eight members-two from the old group and six new members.

Instead of the old meeting schedule of 1 1/2 hours twice a month, we now meet weekly for one hour. Our next problem is that we need to find yet another new facility, so that we can start a third group. Up to now I have been involved in six support groups, half of which I started: Kessler Institute, North Jersey Stroke Discussion Group, Rusk Institute, University of Arizona, Scottsdale North Stroke Discussion Group, and Stroke/Aphasia Via Linda Group.

From my experience in support groups, I have found the work at the University of Arizona in Tucson and the Rusk Institute in New York City the most helpful, but I found that all of them had merit.

I have a sense that after my stroke, I did not get better until I met other people with the same problem. My colleagues and I believe that joining a group is the most important thing that a stroke survivor can do for himself or herself.

I know that this group idea works. Some of us have been at this organized talking and listening for some years, and we believe that our experience is a worthwhile thing to communicate to others who are aphasic. For a support group, it is acceptable to have help from a professional, but it is not essential. The talking and listening should be done mainly by the persons with aphasia themselves. (Spouses and other caregivers can and should have their own group.)

We also think, of course, that a person with aphasia should participate in continuing speech therapy on an individual basis, taking advantage of the skills of trained professionals, as long as it is possible and feasible to do so.

Our colleagues say that it is important to get everybody to participate and join in. Even if they cannot talk, they can acknowledge or respond to the conversation with gestures of some kind. Anyone can participate. (It is necessary of course, to have at least a few who can carry a conversation.)

Every new member is invited to start by telling his or her own story of the stroke and rehabilitation efforts, and then we all respond with our own stories. Everybody’s story tells me something new and something different. It is essential for the leader of the group not to dominate the group and its conversation. Everybody must get involved. Somebody has to send letters or make phone calls to remind members to come to the right place at the right time. Many people with aphasia have problems with remembering.

Although my first groups had twice-monthly sessions for an hour and a half, I now think it is best to have weekly sessions one hour each. I will continue with the University of Arizona group because it functions as a model. But further work, my new mission is life, is one of helping others by creating still more aphasia groups and pushing the members to go as far as they can to overcome their aphasia. Who knows where this might lead?

For more information, contact:

Roger Ross
8519 E. San Daniel Dr.
Scottsdale, AZ 85258
FAX 602.922.9042