George Smith: So far, so good in ALS fight

January 24, 2018 - als

Following a announcement of my column about my illness, ALS, we was impressed with smashing messages — in emails, Facebook posts, cards and letters, and phone calls. Messages came from as distant divided as Alaska and Italy.

Alessandro, who manages his family’s tiny winery, Il Santo, in Greve, Italy, where we adore to stay in one of their dual let apartments, emailed a unequivocally special message, with a wish we’ll be means to lapse there. We have sent some-more than 50 people from Maine to stay there, and all have desired it.


Alas, it is too formidable for me to transport prolonged distances, though we will always have smashing memories of Il Santo and Tuscany. Linda and we motionless to spend some-more time during a favorite places in Maine, including Monhegan, Lubec, a north woods camp, and a home in Mount Vernon.

One thing that astounded me in a messages was how most my work and essay impacted and gratified people. Many remembered specific issues or columns, including one lady who wrote: “I for one will always remember a open conference during a State House when we stood adult and settled ‘that we have got to stop bad mouthing a rivers.’ Those difference to this unequivocally day pierce me.”

And afterwards there was a summary from a associate whose mom has ALS. She unequivocally wanted to fish, and they indeed figured out a approach to get her out onto a lake in her wheelchair. That really desirous me.

Messages like those — from folks who have gifted ALS themselves or with family members or friends — have meant a lot. we followed adult with some for some-more information about their experiences, and schooled a lot.

It’s my goal to write about this knowledge from time to time, and share with we a lessons we learn along a way. Today, we’ll start with medical insurance. I’m advantageous to be lonesome by Medicare and Martin’s Point Generations Advantage plan.

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

For example, a renovations indispensable to make a home permitted when I’m in a wheelchair are not lonesome by insurance. Among other things, we had to build a 90-foot corridor to a front door. We have never used that door, though it is a usually one that would work with a wheelchair.

I attended a unequivocally ominous convention on wheelchairs during Maine General, hosted by Nell Davies of a ALS Northern New England Association, and schooled that some of a facilities we would like to have, including a lift that moves a chair to opposite heights, are not covered.

Another convention focused on communication devices. ALS patients mostly remove their ability to talk. And we might know that we adore to talk! I’m already regulating a module called Dragon that forms my difference as we pronounce them, since it’s formidable to type. They showed us one device that, when we demeanour during it, forms what we are thinking. Yikes — substantially not a good choice for me.

And afterwards there’s my ALS medication, that delays a symptoms. It costs $600 per month and we was profitable only $10, until final September, when a staffer during Hannaford’s pharmacy said, “Oh, this is expensive. You owe $297.” She told me we contingency be in a “donut hole” of word coverage, something I’d never listened of.

Fortunately, we have a income to compensate that much, though we asked a staffer what people do who can’t compensate that most — she pronounced they palm behind a medicine and go without. That is unhappy and so wrong.

Arriving home, we fast called Anna during Martin’s Point and she explained a “donut hole” to me. It’s a requirement of Medicare, that pays for my medicine. After Medicare has spent a certain amount, we have to compensate more. Fortunately, full coverage starts over during a start of any year so we am now out of a donut hole until subsequent fall.

Accessible vans, indispensable to get me out and about, are unequivocally costly and not lonesome by insurance, so I’ve only begun researching that issue. One problem in traffic with ALS is that symptoms vary, and that doubt is tough to understanding with.

Linda and we are sanctified by family and friends, all of whom are fervent to help. Three of them showed adult a day after that snowstorm to assistance shovel. Two friends easily spent dual weeks operative on a yard and entrances.

So far, so good.

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





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