Caregivers Perspective

Diane Ackerman’s One Hundred Names for Love

Some of you may have heard of Diane Ackerman‘s book “One Hundred Names for Love: A Stroke, a Marriage, and the Language of Healing”. Below we are sharing an audio interview (and the corresponding transcript) with Diane that has been originally conducted on The Leonard Lopate Show and published on WNYC website.


Diane Ackerman and her husband Paul West, both writers, had built their relationship and 40 year marriage on the intricacy of word play. But, when at 74 Paul suffered a stroke that rendered him largely unable to communicate it was not only his joy of communication that was devastated, but also the foundations of their marriage.

One Hundred Names for Love, Ms. Ackerman’s new memoir published by Norton, chronicles the couple’s struggle to rehabilitate Paul and rebuild their relationship. And, I am very pleased that it brings Diane Ackerman back to our show today. It’s always a pleasure to see you.

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An Interview with Elizabeth McIntyre

Elizabeth McIntyre

On a couple of occasions we’ve featured Aphasia the Movie and Carl McIntyre on the Aphasia Corner Blog. Recently, we had an opportunity to interview Elizabeth McIntyre, Carl McIntyre’s wife. Dr. Barbara Bennett Shadden – a speech and language pathologist and a long-time caregiver to her husband who has aphasia – helped us conduct the interview with Elizabeth.

Part of the extraordinary power of the movie Aphasia is the way the audience is allowed to experience the world – and aphasia – through your husband’s eyes and ears and mind. It is so difficult for those not touched by aphasia to understand how the inability to communicate affects every aspect of life, including one’s sense of self or identity. The movie truly lets us inside Carl’s world.

But what about you…your world…your sense of identity? We catch glimpses of your reality throughout the movie, but it is Carl’s story. Perhaps you would be willing to share a bit of your experiences in answering the following questions: Continue reading the full article

A Happy Caregiver – A Happier Life

Mom & Lori at Christmas 2006

Anyone who is a caregiver of a family member or friend knows that what affects your loved one also affects you. Some illnesses or disorders are easier to manage than others. For many, the patient is affected the same way and there is a proven treatment. But for those of us caring for a loved one who suffers from Aphasia, there is no one place to go to find the answers.

The first challenge we deal with is that Aphasia comes in many forms. There is Expressive, Receptive, Transcortical sensory and Nominal aphasia just to name a few. The next challenge is that even when two people suffer from the same type, it can manifest differently from patient to patient, leaving everyone feeling alone and at a loss for answers.

I was a caregiver to my Mother for eight years. She survived a massive stroke and along with severe right side weakness, she had Expressive aphasia. Mom would say “do do do” in sentences and think she was speaking words. In the beginning, we tried everything from speech therapy to acupuncture, with only minimal results. The frustration and aggravation mounted as we realized she wasn’t getting any better. Continue reading the full article

He Used To Be…

Identity Thief

You should have known Bob before the stroke. He was so smart… so funny… so sensitive…

I wish I had a dollar for every time I heard something like those words. Sadly, family and friends sometimes do believe that the stroke and resulting aphasia truly changed who the person was. Why is that? Continue reading the full article

He’s a Traveling Man

Those What Ifs

Paul Benson at Tucson B & B 2006

The suitcases were lined up by the front door, car service ordered for 8 am the next morning, two round trip tickets to Tucson AZ were in my purse. Everything was set for our two-week vacation. So why did I feel so unsettled? Was it because this was the first major trip for my husband Paul since his stroke 14 months earlier? Yep, that was it. Continue reading the full article