Following the publication of my column about my illness, ALS, I was overwhelmed with wonderful messages — in emails, Facebook posts, cards and letters, and phone calls. Messages came from as far away as Alaska and Italy.

Alessandro, who manages his family’s small winery, Il Santo, in Greve, Italy, where we love to stay in one of their two rental apartments, emailed a very special message, with the hope we’ll be able to return there. We have sent more than 50 people from Maine to stay there, and all have loved it.

Alas, it is too difficult for me to travel long distances, but I will always have wonderful memories of Il Santo and Tuscany. Linda and I decided to spend more time at our favorite places in Maine, including Monhegan, Lubec, our north woods camp, and our home in Mount Vernon.

One thing that surprised me in the messages was how much my work and writing impacted and pleased people. Many remembered specific issues or columns, including one lady who wrote: “I for one will always remember a public hearing at the State House when you stood up and stated ‘that we have got to stop bad mouthing our rivers.’ Those words to this very day move me.”

And then there was the message from a fellow whose mom has ALS. She really wanted to fish, and they actually figured out a way to get her out onto the lake in her wheelchair. That definitely inspired me.

Messages like those — from folks who have experienced ALS themselves or with family members or friends — have meant a lot. I followed up with some for more information about their experiences, and learned a lot.

It’s my intention to write about this experience from time to time, and share with you the lessons I learn along the way. Today, we’ll start with medical insurance. I’m fortunate to be covered by Medicare and Martin’s Point Generations Advantage plan.

Anna Keeney at Martin’s Point is always available to answer my questions and explain my insurance coverage. But even with this great insurance, lots of things are not covered.

For example, the renovations needed to make our home accessible when I’m in a wheelchair are not covered by insurance. Among other things, we had to build a 90-foot walkway to the front door. We have never used that door, but it is the only one that would work with a wheelchair.

I attended a very informative seminar on wheelchairs at Maine General, hosted by Nell Davies of the ALS Northern New England Association, and learned that some of the features I would like to have, including a lift that moves the chair to different heights, are not covered.

Another seminar focused on communication devices. ALS patients often lose their ability to talk. And you may know that I love to talk! I’m already using a program called Dragon that types my words as I speak them, because it’s difficult to type. They showed us one device that, when you look at it, types what you are thinking. Yikes — probably not a good choice for me.

And then there’s my ALS medication, which delays the symptoms. It costs $600 per month and I was paying just $10, until last September, when the staffer at Hannaford’s pharmacy said, “Oh, this is expensive. You owe $297.” She told me I must be in the “donut hole” of insurance coverage, something I’d never heard of.

Fortunately, I have the money to pay that much, but I asked the staffer what people do who can’t pay that much — she said they hand back the medicine and go without. That is sad and so wrong.

Arriving home, I quickly called Anna at Martin’s Point and she explained the “donut hole” to me. It’s a requirement of Medicare, which pays for my medicine. After Medicare has spent a certain amount, I have to pay more. Fortunately, full coverage starts over at the start of each year so I am now out of the donut hole until next fall.

Accessible vans, needed to get me out and about, are very expensive and not covered by insurance, so I’ve just begun researching that issue. One difficulty in dealing with ALS is that symptoms vary, and that uncertainty is hard to deal with.

Linda and I are blessed by family and friends, all of whom are eager to help. Three of them showed up the day after that blizzard to help shovel. Two friends generously spent two weeks working on our yard and entrances.

So far, so good.

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

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