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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