Living with Aphasia

A new paradigm to rally round people with aphasia

God knows my speech therapist worked daily, Monday to Friday, attentively and conscientiously, to help me get my limited speech, by stages, back; I will be beholden to her every day for the rest of my life. She was in the trenches with me and the rest of my aphasiacs sweating out each letter, syllable and word fifty weeks a year. I valued her and her colleagues at Transition of Long Island and the hundreds of other hands on speech therapists and the people with aphasia who shared their experiences, as limited as they were. Over the years I spent more time in rehabilitation centers, hospitals, universities, and other types of community aphasia groups listening, speaking and Skypeing. The worst assembled group programs for aphasiacs and caregivers were those who were presented my therapists who didn’t have daily hands on experiences in the trenches presently or people who didn’t have aphasia but had a script about aphasia; the chutzpah, the audacity, the presumptuousness and pretentiousness when they wring out words that say that aphasiacs are bright but the organization somehow couldn’t  find one person, one person, with aphasia to present the program and the other speakers who have aphasia. Continue reading the full article

How I Explain My Stroke To My Son…

I had a stroke a week after giving birth to my son, Aidan, he is now seven. When he was between two and three years old he began noticing I was different. How do you explain a stroke to a child? While playing with Aidan, he wanted me to do something with both hands. I told him, “Mama’s one hand doesn’t work,” for a while that satisfied his curiosity. Continue reading the full article

The Pain When an Aphasiac Mourns For His Son

From the time I had my stroke in February 2002, an embolic cerebrovascular accident with severe aphasia, I struggled for my freedom, to be seen, heard and listened to by businesses, governmental agencies and religious institutions. In the main they dealt with me as invisible, voiceless, and politically isolated. In the continuum of raw passions I experienced a gamut of emotions that desecrated me, my spirit and my memories, when I wasn’t able to pray for my son, Robert, in a respectful manner because of my aphasia and the time limitations placed on the religious services; it seems sacrilegious.

The most impious action was caused by the nicest people because they misunderstood aphasia and heartbreak felt by aphasiacs when they couldn’t pray for their love ones. These were not the Fools of Chelm, written by Isaac Bashevis Singer, a Nobel Prize-winning Jewish writer in the Yiddish language; on the contrary their leaders were competent and normal; and it occurred this past April 16. That day I wanted to pray, to memorialized and recall my son Robert, his legacy to me, and the beauty when he was a little boy, the times we played basketball, baseball, and football. We went bike riding. He was a proficient skier. My son was sweet, sensitive, and bright. He was a good researcher, enjoyed books by David Baldacci and was knowledgeable about politics. The last few years we had breakfast together at least once a week when possible, we had a smer of vegetable cream cheese, an onion and a tomato on a whole wheat bagel. We were political junkies, Obama, the economy, Afghanistan, the military-industrial complex and the government’s role in the drug traffic during the Reagan administration. He joined me in his teen years for the Jewish High Holidays of Rosh Hashanah and Yom Kippur. Rob was fiercely loyal. But he was not able to protect himself from life and people.

He is my son and I miss him intensely every day so I commemorate his yahrzeit, the Jewish anniversary of his death, by reciting the mourner’s version of the Kaddish prayer in a conservative Synagogue or shul. The truth be told I can’t pray in the shul at this time because my aphasia holds me back as does my Hebrew. But with time I know that I could read again the Hebrew words; it will take time but it is doable. But the speed by which the other congregants say the prayer makes it impossible for me to say each word distinctly so it has meaning for me. Although my religion allows me to recite the mourner’s version of the Kaddish prayer at home at my own pace it is preferable for me to join in the minyan, a quorum of ten Jewish adults required for certain religious obligations including mourner’s version of the Kaddish prayer. I know that Rob would want that respect for him and me so it is essential for me to say the mourner’s prayer each word distinctly at my own pace. I could work hard on my Hebrew but congregants would have to slow down immensely; isn’t it sacrilegious if they don’t do this?

The spirit and soul of an aphasiac is tried every day by business, agencies and religions. What are the other substantive issues that aphasiacs hardly talk about but means a lot to them?

On Gabby Giffords: ABC News Fails to Find the Words…

While last night’s ABC News telecast with Diane Sawyer about Gabby Gifford’s struggles and her promising progress was nothing short of miraculous, ABC News did a disservice to the almost two million Americans who suffer from aphasia, the communication disorder brought on by traumatic brain injury or stroke, from which Giffords suffers. Not once was the word aphasia mentioned. For many of those struggling daily with this language deficit, aphasia may be only one of their many health issues, but it’s a vital one. For many of us who work daily with people who have aphasia, we too struggle to “get the word out” about the meaning of aphasia. Continue reading the full article

The Treasure Hunt

Entering the Society for Neuroscience video contest was a wonderful opportunity to provide information about aphasia, particularly for children. The video tells the personal story of people with aphasia and their families, and the poem allows the power of words to bring the whole story together. It is called ‘The Treasure Hunt’ because we wanted to help people understand how something so precious could be lost and what it might be like to try and find it again.

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Jill Bolte Taylor’s Stroke of Insight

From TED: Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. An astonishing story.

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Meet Len Upin And His Wonderful Artwork…

Stroke and Beyond

“I thought my job, as an art high school teacher, was an ideal profession. Plus my 3 kids and my wife were a healthy, creative, handsome group. It was a perfect picture. Yet, my stroke and aphasia, my decision to select an early retirement and the loss of our oldest son was too much to bear — all within a 10-month period.”

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The Birth of the Adler Aphasia Center

Elaine and Mike Adler

More than 18 years ago, prominent businessman Mike Adler had a stroke and developed aphasia. Following bypass surgery, a blood clot developed and went to his brain. This was a man with a successful global marketing business with more than 500 employees, a world traveller, and the financial resources to make things happen. Now he couldn’t walk or talk and his cognitive skills were weak. Continue reading the full article

Running For Papa


As I was walking back to my brother’s apartment in NYC, just after completing the 2010 NYC marathon, he said, “I want to tell you something but I am afraid you will want to do it.”

Naturally, my curiosity was piqued and when I asked him what was on his mind he said:

“I heard there is a half on the Great Wall of China, maybe even a full marathon. ”

With that one sentence, started a vision and a journey that has completely shifted my life toward something far more important than just running. No longer was it just about conquering a race and getting to the finish line. This has become a journey to educate people who know nothing about aphasia and Primary Progressive Aphasia (PPA) by taking the fight to their social media forums. Literally. Continue reading the full article

Unique Camp Breaks Down Communication, Social Barriers

EAU CLAIRE, Wis. — Mayo Clinic Health System is sponsoring its eighth annual Aphasia Camp for people with an impaired ability to use or comprehend words, usually as a result of a stroke or brain injury. Aphasia Camp 2011 will be Friday through Sunday, Sept. 9 to 11, at YMCA Camp Manitou in New Auburn.

Individuals with communication disorders tend to isolate themselves and withdraw from social settings. Aphasia Camp is one of the few camps nationwide that offers people with aphasia and their family, spouses or caregivers a chance to increase social interaction and practice communication skills in a supportive setting.

“We didn’t set out to create something unique,” said Mary Beth Clark, a speech pathologist at Mayo Clinic Health System who was one of the camp’s original organizers. “We just saw a real need among our patients and their families for a social, yet therapeutic, outlet such as this, so a bunch of us got together and said, ‘Let’s do this.’ ”The camp runs largely on clinicians, instructors and community members volunteering their time, as well as local businesses donating goods and services. Campers can choose to participate in activities, such as fishing, boating, golfing, biking, computer technology, arts and crafts, cooking and games. Continue reading the full article