The caring compassion of friends has been a wonderful experience as my wife Linda and I deal with my illness, ALS. And it isn’t just close friends who offer help.

We recently enjoyed a party celebrating the 50th anniversary of Springbrook Country Club, and lots of people emphasized that they would be happy to help us. This has been a surprise. I knew our close friends would want to help, but people all over the state have said they would like to help us.

I have heard from some people with ALS who feel isolated, and I have emphasized the importance of letting their community know of their illness and need for help. I met recently with a lady who had just been diagnosed with ALS. She was devastated and asked to meet with me. We had a wonderful visit, with lots of laughter, and I am hopeful that she will reach out to her community for help.

I have found many ALS patients inspiring, from my monthly support group that meets at MaineGeneral, to Noel Lavasseur, a Mainer who was diagnosed with ALS about 10 months ago and who has been a whirlwind of activity. Folks have also sent me books with helpful and inspiring stories.

I can’t do much with my fingers and hands, and my legs are so weak I am using a walker and practicing in a wheelchair. I can still drive, but that will probably end when I’m in the wheelchair. I’ve also gotten a device to help me breathe while in bed. My pulmonologist, Dr. Filderman in Rockport, sent Molly from Apria to deliver the device and teach us to use it. Molly has visited us three times now and been a great help.

My voice has softened to the point it is hard for some people to hear me. That’s frustrating me. I can no longer sing, but my awesome friends in our church choir still insist that I stand up there with them. That’s very special.

Linda has been awesome, doing so much for me — including opening my beer! I have lost some of my appetite, but Linda is preparing lots of nutritious meals for me.

I’ve written before about how expensive ALS is. This year I ended up in the Medicare donut hole in July, driving my copay for my ALS medicine from $10 to $300 a month.

The ALS Association’s Northern New England Chapter continues to be very helpful, so I helped them raise money from corporate sponsors and recruit walkers for their Bangor and Portland fundraising walks. I think they were surprised I raised so much money, but I’ve been raising money for 40 years. And I love asking people for money!

I was most pleased when my friends at Geaghan’s Pub in Bangor offered their boneless chicken wings to Bangor walkers. Yum! Linda and I love those wings.

Family members and friends joined us in Bangor, where my sister Edie took the lead, and more friends turned out for the Portland walk, where my friend Rusty Atwood led the event. I am so grateful to all. In Bangor, Edie organized a team of walkers who wore T-shirts saying, “Give It The G.A.S. – George A Smith.” Even Sen. Angus King showed up to join my team.

I worked with the ALS Association’s Maine staffer Laurie McFarren to identify accessible trails, restaurants and inns, and was surprised that there is no central data base for this information.

One of my favorite conservation groups has 100 hiking trails and only one is handicapped accessible. And I’ve been surprised that even some restaurants, which are required to be handicapped accessible, are not. For example, you might be able to get into the restaurant in a wheelchair, but the tables are too high for you to reach the table top.

One of the nice things that continues to happen is recognition of my contributions to Maine and my community. It was very special at June’s Mount Vernon town meeting to receive the Spirit of America Award for my contributions to our community. I’m very excited that a huge addition to our library, which serves Mount Vernon and Vienna, is almost completed. I raised the money for that project.

I continue to receive lots of cards and letters with very thoughtful messages. I’m keeping all of them in a bag in my office, and I enjoy pulling a few out from time to time to reread them. So keep those cards and letters coming. Thanks to you all.

George Smith can be reached at 34 Blake Hill Road, Mount Vernon, ME 04352, or [email protected]. Read more of Smith’s writings at www.georgesmithmaine.com.

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