I understand numbers and can read them, but it is hard for me “catch” them when spoken. For example, if you tell me your phone number, I may only get half the numbers. But if you write it down, I will be able to call you. My speech therapists explain that this is part of my stroke-related aphasia, a problem with processing the words.

Before my stroke, I never realized how much our daily conversation uses numbers, numbers, numbers! The cost of things, the weather forecast, the time of an appointment, the date to meet for lunch, and the score and plays in a baseball or football game.

I try to practice every day to improve my ability to catch numbers:

* I listen to the weather forecast and the stock market numbers (the Dow Jones) on the radio in the
car. I try to remember the numbers. Then when I return, I check the numbers on the computer or TV.

* When I’m watching TV with Stephanie, and I hear numbers, I’ll write them down and ask her if I’m
correct.

* Recently, I was in a local government office where you take a number and wait your turn. The
number board was not working, so I asked the person sitting next to me to help me listen for my
number. I was anxious while I waited, and happy that I heard my number correctly when they called it.

Many stroke and aphasia groups play “Bingo” — also a good way to practice listening for numbers.

If I can do it, you can do it too!

Other insights and tips for coping with life and taking control of your recovery after stroke are available on my website Stroke Survivor .

Before my stroke I was active, outgoing, and had lots of friends. I loved school and was in the gifted program.

On the first day in Las Vegas I wasn’t feeling well. My mom and I stayed back at the hotel while the others went to Zion National Park.

Shortly after they left, I had my stroke. I ended up in the Intensive Care Unit and couldn’t talk, read, write, or even understand. My entire right side was paralyzed. I couldn’t walk and even swallowing food was hard. I had some seizures.

I had to have two brain surgeries because of a vascular problem that caused my stroke. Once I stabilized, the hard work of rehab began.

After nearly 3 months of rehab, I was finally able to go back to school. I was so excited!! But, most of the teachers and my friends didn’t really understand what I was going through. I was now in a wheelchair and couldn’t talk due to my aphasia. Aphasia is the disability that affected my speaking, reading, and even writing. Aphasia does not affect intellect.

I was so frustrated. Everyone treated me differently. I felt lonely, sad, and really angry. I knew inside that I had to fight to get better.

I progressed in rehab. I learned how to use my left hand for everything. (I’d been right handed) I went from the wheelchair, to walker, to cane, to walking by myself.

My aphasia was my biggest problem. I went to lots of speech therapy and my mom worked with me and she hired others to help me too. Finally, I was able to talk again – starting with just single words

It’s now been 15 years since my stroke. I am now 25. I’ve had years and years of speech therapy and can now speak quite well. I can read and write again. I’m walking. Things aren’t as easy as before, but I live independently and strive to live a “normal” life.

“You need to do what needs to be done, whether you feel like it or not.”

I will never give up. I still go to rehab in Henderson, NV where my family has moved to. I attend a stroke support group and joined in an aquatic swim class for survivors. I work out at the gym.

My hobbies are going to the movies, playing the Nintendo Wii as part of my therapy, and traveling. My family even organized a stroke cruise a few years ago. I went on a trip to Europe this past year by myself. For me, traveling is a good way to challenge myself and enjoy life again.

I’d like to share my thoughts on achieving goals. Stimulating the mind is important. I had lots of therapy. I was not allowed to sit in front of the TV all day. I kept busy with learning how to grow a garden, learning to watercolor paint, use educational games on the computer and more.

I believe it is impossible to recover by lying in your bed all day as you won’t accomplish anything. You have to make an effort.

It is very hard work to be faced with a disability and rehab. Everything changes. It affects you emotionally, physically, and your goals can change.

Coping with this new disability is rough and it affects the people who love you too. But, eventually you will get it. Patience is important, very important.

I couldn’t even talk, play soccer, or even hang out with my friends. My life had totally changed. Sometimes, I felt sad and even angry. I think it is normal to show your emotions as it’s part of the healing process.

I think having faith is crucial too. You have to believe that you will get better. It takes a strong desire to recover and work hard on it so you can. There are many obstacles, but you have to believe you can face them to overcome them.

I often had failed attempts at things I tried. But, I tried again and again. When you put your mind to it, you can go far.

I think it is important to focus on what I can do, not on what I can not. I still have some paralysis on my right side with my hand, ankle, and toes. I can drive and I walk without a cane. I talk, read, and write again. It isn’t as easy as before.

No two strokes are alike. No two recoveries will be the same. But we all must find the motivation and courage to keep trying. There will be times you want to quit. But, you must fight to overcome the down days. You have to do what needs to be done whether you feel like it or not.

My goals have changed.   I wanted to be a doctor like my dad.  I think I would have been a great doctor.  But, I can still help people.  I want to encourage and help others with stroke and aphasia.  I can still make a difference.  My stroke can’t take that away from me. 

Stroke survivor David Dow has appeared in People magazine, Stroke Connection Magazine, and on Good Morning America, It’s a Miracle, Hour of Power, as well as several regional televisions spots on stroke and aphasia. David was named to the Ohio Governor’s Council on People with Disabilities. He has received an award from the Ohio Speech Hearing Association for his work on raising awareness for people with aphasia. Currently, David is working with the American Stroke Association planning a Stroke Cruise for 2011. David lives in Henderson, Nevada.
Email: theaphasiafamily@aol.com Phone: 702-982-3075

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

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

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.

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

Read More .

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 .

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.

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.