Two articles posted in Stroke Net newsletters under the title of Speak No Evil, written by Erin and JJ Robertson.

JJ had a stroke in February 2009. Erin is his wife and caregiver. JJ’s primary residual from the stroke is aphasia. In this column they share their stroke experiences.

Click on Aphasia Comes to Roost and Emotions and Stroke

An article in the StrokeNet newsletter “Fuel for the Journey” by Lin Mouat

Managing Your Energy

I used to be able to force myself to do more than my body allowed. In the past, I’ve often pushed to the point of feeling sick – something I wouldn’t recommend. I got away with overdoing for many years, until, over a period of time, physical ailments assailed me – each one depleting me more.

By the time I had bilateral strokes, I was already struggling with the affects of Fibromyalgia, and the strokes pretty much drained my energy.

A few of the things that can affect our energy are:
• Medications
• Physical difficulties
• Age
• Level of activity, which for many of us can be dictated by our physical and pain issues
• Lack of sleep. I think that sleep patterns is an individual thing.
• Attitude.

Click on StrokeNetwork to read more

Author: Paul R. Rao

I was recently appointed to the Board of the National Aphasia Association (NAA), which prompts me to share a rather unique experience surrounding the aura of “aphasia.”

On the day last spring when the NAA’s annual gala was held in New York City, my wife, Martina, and I took a train to New York and arrived around lunch time. We had time to kill before the gala so we ambled around Bryant Park, right behind the New York Public Library. In the middle of the park was a large white tent. Inside was a treasure trove of books. The Academy of American Poets was giving away free volumes of poetry in recognition of National Poetry Month.

Not being much of an aficionado of poetry, I selected the thinnest volume, The Long Meadow by Vijay Seshadri, as my book of poetry. I randomly opened the book to a poem. There, on page 26, was a poem entitled “Aphasia.” Martina and I looked at each other with incredulity and an eerie feeling that a “Broca” spirit was channeling me to that page. What are the odds that considering all of the many volumes of poetry under the big tent that there would be even one tiny poem on aphasia? Miraculously, hours before the gala to celebrate the victory of the human spirit in coping with aphasia, I was given a gift of poetry that so deftly captures the essence of fluent aphasia.

His signs flick off.
His names of birds
and his beautiful words—
eleemosynary, fir, cinerarium, reckless—
skip like pearls from a snapped necklace
scattering over linoleum.

His thinking won’t
venture out of his mouth.
His grammar heads south.
Pathetic his subjunctives; just as pathetic
his mangling the emphatic enclitic
he once was the master of.

Still, all in all, he has
his inner weather of pure meaning,
though the wind is keening
through his Alps and his clouds hang low
and the forecast is “Rain mixed with snow,
heavy at times.”

(Reprinted from The Long Meadow, Graywolf Press, 2004; this poem first appeared in The New Yorker.)

To read the complete article including the Poem entitled: “Aphasia”, please Click Here.

Author: David Douglas Allard

Tools of the Thoughts

Quit is a word that never entered my mind when I had to start a new beginning. I was without words to match my feelings; words were a mystery to me. It was a very different feeling, as it was difficult to let the words out. It was important to let people know that I could say the things inside of me. I just couldn’t get the words out of my mouth to the rest of the world. It was like hibernation. But I did not give up. I was 24 years old when my speaking skills were damaged from the stroke. It was like an invisible wall was keeping me from being able to communicate. I had to find a way to unlock these magical words from behind that wall. I am picking up the pieces and climbing over this invisible wall.

Speaking and understanding language was strenuous. At that time, when somebody interrupted me, it was like some kind of terrible madness had crossed my pathway, and made the thoughts and ideas and words spin in circles. I was exhausted and useless. Yet I did not give up!

I was living in a world in which my wounded mind and words were not clear. It’s painful not to have that gift and, of course, I shed tears knowing that I could not imagine getting better. When my friends came over to see me and they saw me with tubes attached to my body they smiled. I smiled back. They reminded me that they still held a place for me in their heart and souls. They started to talk. I listened but I could not follow them. I had to say something but no matter how I tried the words just would not come, so I curled back and listened quietly.
That is how I came to understand my own life better. In the end, I have come out a survivor. I can relearn conversation skills that touch every person who is listens to me. You can do it. I did it!

David Douglas Allard
P.O. Box 417
Keswick, Va 22947
1-434-979-1109

Author: J. Ellen Fedder

Read More .

Author: Walt Kilcullen for Stroke Network Newsletter

Visit Stroke Network .

If you are a stroke survivor or someone who cares for a stroke survivor, you might skip this article because you cannot imagine someone who has had a stroke being able to ride a horse. You may think that your disability would make riding a horse impossible. You may think you are too disabled or too old, or that you have never ridden a horse. But for those who have taken part, the rewards are invaluable. Read More .

Author: Carolyn Von Allmen

In August 2000, my husband, Erwin von Allmen, had a stroke leaving from aphasic and unable to read. Loss of reading ability is a devastating experience for someone who was a voracious reader.

After two years, Erwin and his sister, Lois V. Smith, developed a system using a combination of unabridged tapes and books that has enabled him to read books again. He uses a simple tape player made be Sony (Cassette-corder TMC 929). It is a table top model which has large buttons, and can be easility used by people with only one functional hand. It can be easily moved around. We color coded the buttons with small stickers glued on with rubber cement: green for go, red for stop, blue for rewind, and yellow for pause. The machine currently sells for about $25.00 found on Circuit City’s website circuitcity.com. Other simple machines may work as well that also play CDs.

Erwin cannot use earphones because of his aphasia. He cannot follow the story, but must use the tapes in the audio mode. Books and tapes are readily available from most public libraries. Books and unabridged tapes must be the same edition, and must be used together. In two years Erwin has read over 60+ books using this method. He started with “The Endurance” by Caroline Alexander. Elspeth Hotchkiss from Miami Shores, Florida helped her father to read again after his stroke. They were able to do this without professional help. Using this sytem, they started with “The Old Man and The Sea” by Ernest Hemingway, a good first choice, short and simple.

What is not known is whether this system will work for everyone. The first person who tried the system started with a commercially recorded tape, and was able to read after three years of not reading. While hospitals/therapists have shown reserve in using this system, they are showing interest now. Patients may have to get their own help in getting started. A partner would be helpful in learning to use buttons on the tape recorder, page turning, and other mechanical issues.

There is an article published in the clinical journal “Topics in Stroke Rehabilitation”. Fall 2003 issue, available on Adobe Reader 6.0, which described the system more completely. Also refer to the U.S. Magazine, Advance for Speech-Language Pathologists & Audiologists, September 20, 2004: “Stroke and Reading: Multimodal Approach to Accessing Ability”, and January 17, 2005 (Editor Letter). A half hour video “Recovering Reading Skills After Stroke” has been made by a public TV station (radnorstudio21.org) and shown locally and by other stations. Cost non-profit US 15 dollars for video duplication, handling and UPS (NO P.O. Boxes), payable to “Carolyn von Allmen”. Foreign delivery request a quote (Canada, PAL, SECAM VHS).

The system has also been written up in newspapers, magazines and other newsletters. If you would like this extra information, be sure we have your name and mailing address. WE HAVE NO INTEREST IN FINANCIAL GAIN. Any comments/suggestions would be welcome!

Carolyn von Allmen
P.O. Box 1884
Southeaster, PA 19399-1884 or her at: erwinvona@cs.com.

For the Advance for Speech-Language Pathologists & Audiologists, September 20, 2004: by clicking here.

Author: A. H. Raskin

As the national labor correspondent of The New York Times for over 40 years, I always considered a vibrant, principled union movement a hallmark of American democracy. My mission, I felt, was to bring together organized labor, employers, the workers and government.

My most valuable tool, I thought, was making sense of the turmoil. I was wrong. My most valuable tool is words, the words I can now use only with difficulty. My voice is deliberated – mute, a prisoner of a communication system damaged by a stroke that has robbed me of language.

Individuals who have had a stroke battle against the twin demons of frustration and depression. Their recovery period is maddeningly gradual. Some retain permanently incapacitated and unable to care for themselves. I am fortunate to have had sufficient recovery that I am physically independent; my ability to speak, however, demands great effort and is limited to short utterances.

The stroke happened in September 1990 at a time when I could take delight in my good health and vigor as a widower of 80 years young. I had recently met Majorie Neikrug, curator of a photographic gallery and woman who would become my wife.

On Sept. 29, a Saturday, Marge and I went to the funeral of a union leader at St. Patrick’s Cathedral. We walked home and had lunch, planning to catch a train for Spring Valley to visit Marge’s daughter. We never did.

During lunch I noticed that my right arm was getting heavier and heavier; then I passed out. Marge realized I was in trouble and pushed me back into my chair. The ambulance took me to the emergency room of New York Hospital, just a few blocks from home. There, a CAT scan confirmed that I had suffered a cerebral vascular accident – in layman’s terms, a stroke – caused by an embolism blocking the blood flow to the main artery feeding the brain.

An experimental drug, Eminase, was administered and prevented further damage within the left brain hemisphere in an area that controls speech, reading, comprehension and writing. The medical term for this disorder is aphasia. An estimated one million Americans suffer it.

I was shell-shocked and disoriented, unaware of what was happening to me. I desperately wanted to make sense of the confusion, but every time I tried to express myself nothing came out. I was forced to remain silent and could not follow either verbal or written commands. Words sounded to me like jargon, as though the people around me spoke a foreign tongue. I could neither comprehend nor use language. In addition, the stroke left my right arm and leg semi-paralyzed. I lay in bed, staring blankly and feeling helpless.

Over the next few days my doctors recorded marked improvement in my strength. The most notable and rapid accomplishment was the walk without any assistance. After long and tedious hours spent with Marge, during which she rotated my legs and, most importantly, gave me encouragement, it was a blessing to be able to walk to her once again.

My understanding of simple conversation also seemed to be returning. I began to produce what I thought were words, but the puzzled look on the faces of my audience showed me that my long-awaited words were nothing more than gibberish. Then, little by little, people began reacting to my vocalizations. Imagine my relief at again being able to express my basic needs with a single word like “eat” “drink” or “toilet.” Each utterance involved deep concentration and struggle to produce a somewhat intelligible word. Each “new” word was received with elation by my family and friends, motivating me to go on. A baby must be excited like that when he utters his first “mama” and “dada.”

It is difficult to convey the depth of my emotional solitude. I did not feel like A. H. Raskin. I now had a new self, a person who no longer could use words with mastery. Privately I could do nothing but cry. With the tears came feelings of anxiety and depression. I wavered between feelings of melancholy and hope.

The desire to achieve, to succeed, to win, to regain my confidence manifested itself in the practice that Marge and I incorporated into our daily routine. Every night I challenge her to a game. It has become out happy hour as we play and joke. Whether it’s dominoes, bingo or backgammon, there is one rule: Marge can’t win and I can’t lose. I’m such a sorehead.

The speech therapy, which I continued on a daily basis as an outpatient at the Rusk Institute of Rehabilitative Medicine, was a laborious and disturbing battle. My body was nearly back to normal, but I felt that a black hole was swallowing my speech. Would it be realistic to assume that the complete physical recuperation would lead to a total re-emergence of my language skills? Would this daily grind pay off? I persisted and the therapists pushed me to do more.

My speech clarity was poor because of weak facial muscles, so I had to focus on improving my articulation skills. I sat before a mirror with Debbie, my therapists, intently studying each movement of her mouth and trying to imitate her with as much accuracy as possible. I was drilled to respond to word retrieval tasks such as finding opposites, sentence production and sentence formulation.

Reading was just as difficult. The printed word at first resembled hieroglyphics. Later, individual words became recognizable and took on meaning, but I could not decipher a printed statement. Looking at a group of words was overwhelming. It was as the words were catapulting off the page and I could not make sense of their significance. The therapist presented two words, three words, four words and more until I graduated to sentences. I felt mournful and frightened, then tense, anxious and full of rage. Yet I knew that I had to get back on that horse.

Initially when I tried to write my name, I just scribbled. Slowly, by copying the letters over and over, it began to come back to me. Spelling was no longer automatic. I was drilled to put down letters and words to dictation, finish the spelling of incomplete words and look for errors in misspelled words. Gradually I combined words in order to form sentences, although I tended to omit the articles and prepositions. Verb tense was yet another chore. I had to rethink all of the irregular and plural forms before printing out.

I now realize that my vocation in life has changed. Now I represent the one million Americans who cannot speak for themselves. My plight and theirs are one: to inform the public that those of us who have lost the ability to invent fluent phrases or sentences have not lost the ability to think. We retain the skill to communicate our thoughts and feelings, whether through writing, picture boards, pantomime or facial expression. We can still speak! We hope that you will listen with your ears, with your eyes and always with your heart.

Appeared in The New York Times September 19, 1992 A. H. Raskin was deputy editor of the editorial page of The Times from 1961 until his retirement in 1976. A longer version of this article appears in the current issue of Martha’s Vineyard magazine.

click Here for another article.

Author: Sarah Heiskell

Gary Bachers was a talented pianist and worked as a doctor for 10 years, but he didn’t find his life’s work until after he had his stroke.

In 1987 at the age of 37, he suffered a massive stroke, which paralyzed the right side of his body and left him with aphasia.

“Aphasia affects a person’s ability to communicate,” according to the National Aphasia Association’s website. “The principal signs of aphasia are impairments in the ability to express oneself when speaking, trouble understanding speech, and difficulty with reading and writing.

The effects of aphasia can differ from person to person. Bachers still has the ability to read a newspaper and can understand conversations; he just cannot participate in them.

After his stroke, he picked up a colored pencil with his left hand and began practicing the stroke that would eventually lead him to a new career.

“It has become a passion for him; it’s his life’s work,” said Gabrielle Bachers. “It is his form of expression.”

What Bachers cannot say with words, he says with art.

“He was always very artistic,” Mrs. Bachers said. “He was a doctor, but he always had that creativity in him.”

Growing up in Winnipeg, Manitoba, Canada, as an only child, Bachers took piano lessons and participated in recitals anc competitions all the way through college.

“He was a wonderful pianist,” Mrs. Bachers said. “He still plays the piano with one hand, and it is amazing. If you’re not in the same room with him, you would never know.”

The stroke came as a complete surprise to Bachers’ family, because there was no history of stroke or heart disease in his family.

After his handicap forced him to discontinue his practice in New Boston, he began using art as a part of his own rehabilitation and therapy, Mrs. Bachers said.

“We just started this because we were desperate for him to do something,” she said. “After the stroke, he was naturally very depressed.”

Bacher’s wife and children continued to give him new things to try to keep him busy and take his mind off his disability. “He was so stubborn that he wouldn’t do it because he knew he couldn’t do it perfectly,” said Mrs. Bachers. He was so used to doing everything perfectly all the time.”

Eventually, he found a medium that he could control – colored pencils.

“We laugh sometimes when we look at the first things that he drew,” Mrs. Bachers said. “It took alot of work and a lot of encouragement to get him where he is today.”

When looking at Bachers’ current series, a theme clearly emerges. Full moons and leafless trees can be found in every piece. “Most of his work has always had the moon,” said Mrs. Bachers. “He can’t tell us exactly what he’s trying to say, be we’ve decided that the moon is universal and everyone can look at it all over the world and feel the same thing.”

In previous years, Bachers focused on large leafed flowers, Mrs. Bachers said – but then he started doing trees. “The trees started after a big ice storm we had. We were without electricity, and our property was just filled with trees, so we were living with a bunch of broken branches. After that, he started doing trees. We became so aware of how beautiful the trees were and how important they were to us.”

Every day, Bachers fills his morning and afternoon hours working on his art, said Mrs. Bachers. He spends up to three or four weeks on some of his larger works. “It is essentially his job. Nothing holds him back.”

After Bachers completes a piece, it is Mrs. Bachers job to give it a name. She interprets the work and decides on a name. He always gives his approval on the titles of his work. “I just wish he could tell us more,” she said. “My son and I talk, and he grunts and groans and can’t really express himself, so we can just imagine.”

Mrs. Bachers has worked with her husband since he started his family practice and is continuing that tradition by framing his artwork and scheduling showings. “It’s wonderful for the kids to see their dad not give up, ” said Mrs. Bachers. “He had to change careers, but he’s doing wonderful in his new career.”

click here to go to Gary’s website.

Author: Donald Weinstein

It has been a cathartic exercise for me to chronicle and sequence the major milestones of my stroke in detail, from stroke victim to stroke survivor and beyond, so that I could go on with my life.

In February 2002 I had an embolic cerebrovascular accident with severe aphasia. The second I woke up from my stroke that day in the hospital I was frightened even before I uttered any words. It was similar to Monet’s Haystack. There was a pale hue; there were changing lights. The color was gray purple. It seemed to me that I was not visible. I could not see out of my bed and others could not see me. It seemed to me that I was a part of a vague light and I could be a fragment that would not be perceived. In a moment I knew that I could not speak, read, or write. I could not communicate. The nurses spoke to my wife Dale and son Jeff. Discussions were with my son and wife and the doctors, nurses and my business associates. Suddenly, I knew that I could not talk. I could not talk to myself. In those moments I was a non-identity. I wanted to die, at least I thought so although maybe not. I remember that I cried. In a primordial yell, howl and moan I told my son that I wanted to die if I could not speak, read or write. These moments, these were frightening seconds and minutes, this torment. I was a pale tone, not seen or heard or felt.

Within three months of my stroke, on Pesach (Passover), as people ate their appetizers, I played with my granddaughters, Alison, 5, and Jessica, 1, in their bedroom in our house. We colored and they talked, especially Alison. They chattered with each other. They lay on the floor and colored and negotiated for different crayolas. They talked continuously. I loved their voices when they made the sounds of “grandpa”. I thought that that would be my lot for the rest of my days, sitting and talking with my granddaughters while adults sat in the other rooms laughing, telling jokes, and providing insights about national politics. I was reconciled to this fate almost at once, a fate that was sad in some ways. After forty minutes or so Alison joined the other ladies. Jessica took my hand and walked me though the house. She looked at the pictures on our walls and the photos of her and the rest of the family. Jessica asked me questions about some of the people in the photos. She smiled that beautiful wide smile often as she walked with me hand in hand from room to room, not caring whether my speech was fluent or not. She just wanted to walk and talk with her grandpa, me. Quickly, I knew that I wanted this for me for ever, talking, walking, coloring and singing with my granddaughters. How strange was divine intervention or providence? My stroke helped me to understand that my time with Alison and Jessica was more important than the witticisms of politics.

It took me about five months to start to read a kiddie book. I started to read as a child learns to read from the beginning, the two or three word sentences, the ones that they can remember by heart, the repetition from one line to another line, the ones that have the same sounds, roots, hit, bit, fit and kit.

Reading was difficult. It was emotionally draining. It was frustrating. It was physically taxing. It was a solitary act for me. It was a daily litmus test to show myself that I was getting better not just better but “whole”. There were skills that I had to master again. I needed to have the ability to identify the letters of the alphabet. I needed to have the ability to sound out letters in the alphabet. I had to sound out words, letter by letter, until I was able to pronounce the word, reread words over and over and over again and sentences over and over and over again. I needed to read aloud to myself. And I needed to read daily for about two hours, it was a job, a full-time job, to learn to read again, the only successful outcome was to try and try to become a reader.

One of the outcomes of my reading, and that was not even thought of when I first started to read, was to trigger my brain to remember the past and it did. It remembered emotions, events, issues and especially people that I hadn’t thought about for at least six months and maybe for forty years as a result of passages from these books. The more I read the more words became part of my vocabulary, not instantly, but that was how it started. There seemed to be a geometric progression, each word or sentence or paragraph generated at least a couple of new memories with names and bodies attached. The power of the word and the images was clearer to me and the importance of reading was life itself,
as I went through a metamorphosis from a frail anguished stroke victim to a regenerated adult with dignity and self-respect.

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