July 2016

I have made it through another year battling with ALS. I am still hopeful to make it to the five-year mark, though it is certainly not a sure thing.. I continue to undergo many changes. My breathing, which has always been so strong, is now reduced to 50%. As that is the ultimate measure my deterioration and my impending death, I find it quite alarming. I sleep with a non-invasive ventilator all night, every night. My voice often is soft and raspy. I have just completed my voice banking, and my eye gaze computer is on order. When I need to spell out words with my eyes, the computer voice that speaks those words will hopefully sound like me! Great technology!

My hands have continued to weaken. While I am not paralyzed my hands are simply not cooperative. I need to be fed most of my meals now, and yes, I DO continue to eat in public despite this. I am not inclined to hide any aspect of this disease. I have much difficulty typing so for the first time I am speaking this update into my computer. (Errors are everywhere!) It is so difficult to go through the day without the use of your hands. There are many fewer accommodations for the loss of your hands than there are for the loss of your legs. I cannot lift my hands above my shoulders; I cannot scratch an itch, and often I cannot lift the weight of my own hand. It is both frustrating and exasperating.

I have returned my wonderful golf cart to Solorider as I am no longer strong enough to steer it. I have taken on a new activity. I go swimming! With the help of my devoted friends, some strong lifeguards and a pool lift I am able to get into the water. Once there I can float, and I can walk again! What a wonderful feeling! With the help of the buoyancy of the water and my floaties, I can walk! Such a feeling of freedom!

We have now had the Second Annual Worthington Fore ALS, and we are planning the Third on January 21, 2017. The support from the Worthington community has been phenomenal. In two years we have raised over $77,000. Wow! My friend, Andrew, the reporter from WINK News, has set up an additional fundraiser with the Fort Meyers Brewing Company. As always, all funds raised will go to ALS research. I am so honored to have these dedicated to me. I feel blessed that I am able to reach out and touch so many people. I hope my legacy will show that I have maximized my opportunity, and I have made a difference.

And now our family is e-x-p-a-n-d-i-n-g. Our son, Jeff, and his wife, Laura, are expecting a baby girl in January! YAY! I am thrilled that I WILL become a grandparent. It is the passing of the baton; it is the circle of life.

My family and dedicated supportive friends work so hard to keep me active and socially engaged. They are the angels on my journey. I am most fortunate for their unqualified love and support. My service dog, Izzy, continues to be a wonderful help and companion. Ultimately, it is Brian who shoulders most of the load. He retired early from his dental practice to be my caregiver. He is attentive, thorough and loving in his care of me. I could not have come this far without him. Despite all of my losses, my life is full, and I enjoy living!

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Madeline Kennedy 2018