At first, I was devastated. After a lengthy period of constantly twitching muscles and lots of tests, my neurologist told me I have ALS, Lou Gehrig’s disease. I sat next to my wife Linda for a minute in silence. Then I began asking a lot of questions, all of which Dr. Stephanie Lash, my neurologist at Pen Bay in Rockport, answered with kindness and concern. Dr. Lash is extraordinary and I am lucky to have her as my neurologist.
As you may know, this is an illness in which the muscles slowly lose their strength. Eventually you may lose the ability to walk, breath, swallow, and possibly even talk. This is most likely to occur over a three- to five-year period. So far, other than the constant muscle twitching, I’ve lost most of strength in my fingers, and in the last month, some of the strength in my legs. And I don’t have a lot of energy anymore, nor is my memory what it once was.
On the ride home from Rockport that day, I decided this would not define the end of my life, realizing that I have been blessed with a wonderful life: a wonderful wife and family, great friends, interesting and rewarding work. Sure, I’d have loved to have had a couple more decades of life, but that is not to be.
In addition to tackling the obvious items of concern, from finances to medical care and insurance, I’ve refocused my life on the things that are most important: family and friends, especially. If there is a lesson here for you, it is this: many of us clutter up our lives with things that are not all that important. I sure did. And you are welcome to join me in assessing how you spend your time, and perhaps refocusing on the most important things in your life.
I feel especially blessed to have grown up in a family of faith, where my mom, our church organist and choir director, centered our lives in the church. At this point in my life, that is a real strength. And I am still singing in the choir, thanks to Mom, who started me on that path when I was 6 years old.
From the day that Dr. Lash gave me that diagnosis, our children, along with my brother and sister, have stepped up to help in many, many ways.
Daughter Rebekah researched and recommended a terrific elder law attorney, Jane Skelton in Bangor. Jane has worked with us to get all of our documents, including wills, up to date — something you should also do. Don’t wait until it’s too late.
Son Josh came up from his home in Massachusetts for a Father’s Day fishing weekend with me in June, and hunted deer with me in November (something he’d not been able to do for many years). And Rebekah, Josh, and our daughter Hilary hosted a long weekend last April, renting a big house on Pine Point in Scarborough, so Linda and I could enjoy time with our kids and grandkids. It was an awesome experience.
Linda and I had a meeting with Elaine Blackwood and Anna K. at our insurance company, Martin’s Point, and they answered all our questions. They continue to be available to answer my questions. And Alpha One sent out their architect to assess the changes we need to make when I’m in a wheelchair.
I’ve gotten lots of good — and inspiring — news and stories from the ALS Association and their excellent website along with other organizations and websites. There are lots of inspiring stories available about people with ALS.
And Nell Davies, staff member for the ALS Northern New England Chapter, drove to Mount Vernon to spend a couple hours with us, answering all our questions and giving us advice, including a recommendation for a pulmonologist, which I’ll need when I encounter breathing problems. She continues to be a wonderful source of information.
My primary care doctor, Kevin Kane, who has taken good care of me for decades, continues to give me the wonderful care I’ve come to expect from him and his great team.
And my accountant, Jim Nicholson, has been very helpful, even inviting Linda and me to his home for a memorable Italian feast.
There have been lots of things to do at home too, from reducing my huge collection of “stuff” to introducing Linda to the chores that have typically been mine. And I continue to write, although I know that will end if my fingers can no longer type.
Well, maybe not. Rebekah bought me some software that types up your words as you speak them!
George Smith can be reached at 34 Blake Hill Road, Mount Vernon 04352, or georgesmithmaine@gmail.com. Read more of Smith’s writings at www.georgesmithmaine.com.
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