Can't Scratch That Itch
A Handbook for People Whose Arms and Hands Don’t Work Anymore
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“I need to go use the toilet now – will you listen for my call?” “Sure” as she continues to finish her breakfast. So I head into the master bath – manage to get my pajama bottoms off – use the toilet – clean my butt thanks to the bidet– go in the closet and open the bottom drawer with my toe – reach my foot in and pull up cargo shorts out and onto the floor – kick them back through the bedroom and into the living area and into the kitchen where Karen helps me pull them on and buckles them and zips them up. “Is there anything else you need right now?” “No, I’m good” I then head back into the den – lean over the remote control and drop my finger down to change the channel to the golf channel. My wife now knows that she has some time to herself to finish her coffee, clean up the kitchen and perhaps respond to some emails. “I’d like my hair washed this morning before we go do anything and a fresh shirt” – so I meet her in the master bathroom – I lean over the sink and she washes my hair, then dries it, then brushes it. “What shirt would you like to wear?” “I think the black T-shirt will be fine” and while I bend over she slides it over my arms and my head and adjusts it. She brushes my hair one more time, puts some toothpaste on the end of my electric toothbrush, wraps my hand around the base, adjusts my hands “is that okay?” “Yes” and pushes the On button. She then starts brushing her teeth and while doing that walks into the bedroom to start making the bed. Comes back into the bathroom, takes my toothbrush and washes it off. “Is there anything else you need right now?” “I don’t think so – thank you for everything you’ve done this morning.” It is only about 7:30 or 8 AM in the morning – by my count there are approximately 22 specific tasks that Karen has performed just for me – I have interrupted what she was already doing at least five times – and she has had to stand up and/or move to another room a combined 7+ times.
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About the Book
Tim, I just finished reading your book. I teared up 3 times and laughed twice. You have done an amazing job! I was thinking to myself how you and Karen are handling all of the changes with such grace. The two of you are such an amazing team and have developed such strong communication skills- you two could probably host a course for other married couples. Another poignant moment for me was on the page where you wrote “We also informed our family that we had the disease that did not have a cure...” I think the “we” in that statement is so true. . . . your book- have you anticipated how you will share it? You may want to consider both the MDA and ALSA (ALS Association) as outlets to share your story and tips. I also think you should pass this along to some of your neurology providers. I think your Prologue is an exceptional teaching tool for medical professionals. I still can’t stop thinking about how you continually think about your blessings- I am going to tear up again and I am not a crier! I thank you for allowing yourself to be vulnerable and sharing your experiences. You are lucky to have found Karen, and she is lucky to have found you. Amy Callan, OTR, DOT | Outpatient Occupational Therapy Supervisor
About the Author
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 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.