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Kylie Bartschi
I was diagnosed approximately three years ago with a motor neuron disease that has left me without the use of hands and arms. This progressive disease started simply with the loss of the ability to...view moreI was diagnosed approximately three years ago with a motor neuron disease that has left me without the use of hands and arms. This progressive disease started simply with the loss of the ability to clip my fingernails and has progressed to the point where I’m completely dependent on my wife for my daily needs. As I went through the process of losing functions, it became more and more apparent to me that I needed to develop some techniques, processes, tools, and capabilities that would allow me as much independence as possible and make it as easy on my caregiver as possible daily. This with this in mind that I decided to write a book about what life is like both physically and emotionally for family.
In the book I try to describe what a day in the life of a person whose hands don't work actually looks like. As a shared the manuscript with a number of friends who spend a good bit of time with us—I constantly got the comment—“I had no idea how many challenges the two of you face every day.” “We knew it was difficult but you often handle did so well that we didn’t see all the things that you do as a couple in the background.” There’s really nothing more personal than all the things that we do on a daily basis that enable us to get up and go out and be in public. What I hope I am able to do in this book is to provide people some how-to ideas on how to adapt to losing the use of hands and arms. Certainly in addition I want you to feel some of the feelings that we do.
l spent most of my career in the telecommunications and IT consulting industries. My career was most fulfilling, having served for over eleven years as an executive with one of the regional Bell operating companies and then getting an opportunity to finish my career as an international consultant with the IBM Corporation. In addition to that, I had the honor to teach both the secondary and college levels and serve as a vice-chancellor in what was then the Oregon State system of higher education.
My wife, Karen, and I have been married for the last eighteen years and have been able to combine our families that now include five children along with their spouses and a combined thirteen grandchildren. We’ve lived most of our married life in Denver, Colorado, but had the wonderful opportunity to spend two-plus years in Sydney, Australia, where we developed lifelong friends who we have added and infiltrated with her fabulous friends here in Colorado. We’ve been fortunate the last three years to have a second home in St. George, Utah, where it is warm in the winter and I don't have to worry about slipping on the snow and ice.view less
Books by Kylie Bartschi
Can't Scratch That Itch: A Handbook for People Whose Arms and Hands Don’T Work Anymore