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Bernice and Herb

Dear Dr. Balchin,

Friends in Chiswick sent us a copy of The Chiswick February 17, 2006
article, “Arni: Now there is life after a stroke.” Thank you for highlighting what seems to be a wonderful program and for your attention to stroke, which in the U.S. is the greatest cause of long-term disability.

Key to the Arni program, and our book, ONE STROKE, TWO SURVIVORS (published by The Cleveland Clinic Press and just released this month) is that stroke survivors must work hard and keep working. Progress is not limited to 3-6 months, as many physicians claim. Nor is it limited to 3-6 years. Advancements are slow but with effort they can be continuous.

Please check out our website: www.onestroketwosurvivors.com. Your members may find it of interest. Our book details the many programs that my husband has participated in since his massive stroke in July 2001. Exercise, including treadmill, is very much a part of our regimen.

Do you have plans to bring your program to the U.S.?

Best wishes,

Berenice E. Kleiman
berenice@onestroketwosurvivors.com

On July 14, 2001, at around 9 a.m., my life turned upside down. My husband Herb survived a massive and debilitating stroke. Our world today is totally unrelated to the past. Energies that we previously focused on family, business, hobbies, and our community now converge on rehabilitation and recovery.

I have lost—temporarily or permanently—my mate, best friend, and business partner. I lost the man who walked the dog on rainy nights, cleared the dishes, and fixed what needed fixing. I miss the concerts, plays, intellectual discussions, and the long driving trips we shared. I worry about who will be my caregiver when my time arises. And I miss making love and the intimacy that comes from being held with two arms. This total loss is so incredible and inconceivable that I refuse to accept it as final.

For these first three years, I’ve driven my husband and myself in a continuing effort to further his recovery. As we inch our way forward, the process seems frustrating, agonizingly slow, and sometimes beyond our capabilities. But we keep going because the alternatives are worse.

Stroke survival lacks a well-defined roadmap. Even professionals report little patterning. No two strokes are the same; no two patients follow an exact progression. Projections are at best educated guess work but I believe that our dogged resolve and hard work will beat pessimistic percentages. Indeed Herb has already made remarkable advances.

Forty-one years ago Herb and I vowed that we would not live our lives based on numbers, clichés, or societal molds. We didn’t then and we haven’t now. The post-stroke journey is not easy and we continue to encounter setbacks. Along the way Herb remains ambivalent about his own progress.

Was it worth the time and trouble to not warehouse me? The question has been ever-present since I first came home about three years ago. My moods are erratic, ranging from complete despondency to a much more hopeful outlook. At one extreme, the bleakest, is the consideration that things are different, drastically so. I sometimes have the feeling I’m a total drudge, not only to my wife but also to anyone lending a hand.

As wife and caregiver I, too, wrestle with questions. When do I acknowledge enough is enough and no longer demand continued improvement? At what point do I back off and let Herb choose an easier existence, whether that be facing his wheelchair to the wall, working at his crossword puzzle, or vegetating in front of the television set?

More determined than my husband, I continue to push exercise, experimental therapy programs, seminars, and even a nutritional regimen. Our contest of wills is often abrasive. Herb would gladly trade me and everything he owns to feast on rich desserts as often as he wishes. I, on the other hand, long for him to move his right hand and become self-directed.

A good compromise would be reaching with my right hand for a piece of cake. Is that possible?

It is tempting to give up and walk away. Often I want to. I miss my independence and want to enjoy life. But I can’t turn my back on my soul mate.

This book shares lessons and tips that, had we known up front, would have made our journey much easier.

We recount our experiences in two voices and sometimes differing viewpoints. Mine, as the caregiver spouse, are interspersed with Herb’s selective comments, as the stroke survivor. We hope our message reaches the family members, and especially spouses, who love and care for survivors with disabling and chronic illness. Perhaps as we lift the curtain to reveal personal and family issues, our candidness will ease the journey for you who follow us.

The total loss from Herb’s stroke was so unacceptable, and the dour predictions so limiting, that I refused from the beginning to accept one or both as final. Don’t allow yourself to accept this utter finality either.

Together Herb and I urge you to work hard and not give up hope!

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