Author: Alyssa Banotai
WAYNE, PA—When Erwin von Allmen had a stroke in August of 2000, it never occurred to his wife, Carolyn, that he would not fully recover. Von Allmen, known to friends and family as “Von,” is the former owner of an international business and manufacturing company, with advanced degrees in chemistry and business, who was nearly fluent in German and Russian. The stroke initially left him unable to walk or talk.
Von Allmen learned to walk again through physical therapy and underwent occupational therapy and intensive speech therapy. He was able to return home about three weeks after beginning therapy and continued physical and speech therapy on an outpatient basis.
“The most important and long-lasting therapy was speech therapy,” his wife told ADVANCE.
When the insurance ran out for rehabilitation, the von Allmens hired Jan Sukay, MA, CCC-SLP, who is based in Collegeville, PA, on their own. Sukay used traditional therapy techniques for patients with aphasia and apraxia, such as orientation, sentence formulation, the use of written cues, paragraph recall, and reading and auditory comprehension.
“I was concerned for his functional status,” she said of her client, particularly his word-retrieval skills.
By carrying a notebook, von Allmen was able to communicate accurate answers in writing even if he verbally fumbled or incorrectly stated an answer to a question. Because he was multimodal, Sukay realized he would need more than one venue to communicate effectively.
Recognizing that von Allmen would not recover the ability to read on his own, Sukay was up front with the couple about the prognosis. “We were so appreciative of her honesty,” recalled Carolyn von Allmen.
The loss of reading ability was one of the most painful side effects of the stroke for the voracious reader, so Sukay began using a weekly, classroom-targeted news publication from Weekly Reader in therapy with von Allmen. Written at a sixth-grade reading level, the publication featured articles on current events, color pictures, worksheets and written activities.
“We found that if I read and he followed along, he could understand it,” the clinician stated. “A whole new window opened for him.”
During a visit with her brother, Lois Smith, a retired RN and von Allmen’s younger sister, developed an initiative to bring her brother closer to the literary world he desperately missed.
“It was clear my brother was struggling with all the things he understood that he had lost,” Smith remembered. “That was very painful for us to see.”
She asked her brother if he had ever considered books on tape, but he told her he had had trouble concentrating on them during a previous illness. After the stroke he had difficulty remembering more than a sentence, and the fast pace of the audio books made it difficult for him to comprehend them.
“It struck me that if I read a book very slowly, simplifying some of the more complex sentence structures, he could listen to the tape and look at the book at the same time,” she explained, “and that might be more helpful.”
Von Allmen and his wife were excited about the idea and the two families immediately purchased identical tape recorders, one for Smith to use in recording books at her home in Connecticut, and the other for von Allmen to listen to the tapes she made. The first book he requested was The Endurance: Shackleton’s Legendary Antarctic Expedition, by Caroline Alexander (New York: Alfred A. Knopf, 2000).
The results were immediate and thrilling, and everyone benefited from the learning experience. “As soon as we turned the tape on, I could read it,” von Allmen stated. “It was fantastic.” “He was so excited,” Smith said, vividly remembering the phone call from her brother. “Even though it was hard for him to speak, he was saying, ‘I can do this thing! I can do this!’”
The system had some problems. At certain points on the tape, Smith would edit certain sentences she thought might be too complex for von Allmen to understand or reference accompanying photographs in an effort to help him keep his place. Since the text modifications were not included in the original, they were more confusing than helpful. This meant that all of the audiotapes had to contain the unabridged version of the text or he was unable to follow it.
Other challenges were the geographical distance between the sister and brother and the mailing requirements involved.
“It took at least a week to get feedback,” Smith said. “The third reading I did an hour’s worth of tape. It was too fast, so I did the next one more slowly. But Von had to wait several weeks between tapes.”
Von Allmen soon became accustomed to the reading system and was able to advance quickly to traditional audio book recordings. He also has improved his operation of the tape player.
“In the beginning, if he lost his place, he’d have a really hard time finding it again,” his wife said. “But now he can push ‘pause’ and orient himself again very quickly.”
To date, von Allmen has read more than 50 books, many in his favorite genre, history. He still marvels at the difference reading has made in his life since having a stroke.
“What a change it makes when you can read!” he said. “Now I’m not locked into watching television, which is just so terrible after awhile. I can turn it off and read a book.”
“It gives him a way to connect to the world again,” Smith added. “He reads a scope and depth of literature beyond what I usually read, and I haven’t had a stroke. It’s very complex subject matter.”
Though von Allmen continues to experience both good and bad days with his speech and communication, which is typical for most people with aphasia, his reading remains consistent, his wife said, observing, “Every day is a good day for reading.”
Von Allmen estimates that he goes through one to three tapes a day.
The reading system is a tremendous venue for someone who requires a multimodal communication component, Sukay said. “It’s just wonderful.”
She utilized von Allmen’s newfound empowerment from reading to encourage him to travel. She shadowed him on trips to Philadelphia and New York and helped him master public transportation schedules.
He now regularly travels to the local mall by bus and makes frequent trips to the Philadelphia Art Museum. He has even spoken to museum staff members, encouraging them to create a program for people with aphasia that would allow them to learn about art and exhibits in the galleries despite their reading and communication difficulties. Von Allmen suggested that the museum provide a guide to share information about the paintings and exhibits for those who were unable to read the descriptions provided in the galleries.
When a friend had a severe stroke and was left with communication deficits, von Allmen shared with him his reading system, and the friend instantly was able to read using audio tapes. His success inspired von Allmen to encourage others to try the system.
“He’s been absolutely committed to trying to tell everyone who’s had a stroke that they should at least try the system,” his sister said. “I think that will happen incrementally, and a percentage of people will be able to do it. It’s given him a new purpose in life.”
“Even in his situation, he’s reaching out and wanting to do more for people,” Sukay said.
Von Allmen hopes his success with the reading system will inspire researchers and clinicians to take the idea a step further and test its benefits for stroke survivors and others who have aphasia. “I hope others can use this technique,” he said.
For Carolyn Von Allmen’s personal testimony, click here .
Vol. 38 •Issue 14 • Page 6