Sitting inside the house, watching friends help Linda with the shoveling, I am frustrated that I no longer have the strength to shovel, and so grateful to the friends who are helping us. Yes, my illness, ALS, can be frustrating at times, but I am focusing on all the good things in my life, especially our kids, grandkids, and friends.

This includes new friends, like the lady in a nearby town who read my first ALS column and called us. Her husband died last year from ALS, and she especially wanted to help Linda through this journey. Her advice has been very helpful, and she and Linda quickly became friends.

I attended a seminar on wheelchairs and have been researching them. When Linda and I visited our new friend the first time, I was surprised to see that she had exactly the wheelchair I wanted. It costs $28,000 — yes, ALS is an expensive illness — and I had checked with my insurance company and learned that I would have to pay 20 percent of the cost of the wheelchair, about $6,000.

The chair must also fit you perfectly, so I was doubly surprised to learn that this lady’s husband was my size. And then I was astonished by her generosity when she sold us the wheelchair for just $1,000.

This new friend also had the communications device I will eventually need. It operates with your eyes. On the opening screen, you look at a box, such as email, and it opens. You can also write with your eyes. Yup, I don’t intend to stop writing! This laptop costs $18,500, but our friend sold it to us for $1,000.

I’m still getting responses to my first two ALS columns, with very helpful advice and information, and lots of offers of help. Today I want to let you know how you can help ALS patients and others with debilitating illnesses.

Deb Turcotte, public information manager at the Maine State Housing Authority, alerted me to a new program that allows you to deduct up to $9,000 a year for renovations that are needed to make homes accessible for people with a physical disability or hardship who live in the home.

Deb put me in touch with Dan Drost, director of MaineHousing’s Energy and Housing Services Department, who is in charge of this new benefit, and Dan helped me with my application. You can learn more about this at Spread the word!

There are lots of ways you can help fund programs that help ALS patients and support research on this illness, including a possible cure. I’ve told you before how much help Nell Davies of the ALS Association’s Northern New England Chapter has been, even joining me for a Maine Calling radio show on public radio. Donations for both research and resources can be made online at

One of the more interesting projects was brought to my attention by a friend who is a Portland attorney. It is called PICKALS, a foundation ( that makes and sells pickles, with all the money going to help raise awareness of ALS and support ALS research. My friend sent us a few jars, and they were delicious.

I also connected with John Gregoire of Scarborough, who has been dealing with ALS for 10 years. John started a nonprofit, The Hope-JG Foundation ( to help other ALS patients with everything from fuel to wheelchair ramps.

Alpha One (, with offices in Bangor and South Portland, provides lots of help to people with difficult illnesses. They sent an architect to look over our house and recommend changes to make sure I’ll be able to access and move about the house. When I told my sister Edie about this, I was surprised when she reminded me that we managed a bond issue referendum that got Alpha One started.

I’ve also heard from Jacquelynn Kaufman, president of the ALS-Maine Collaborative (, a grassroots, volunteer-generated statewide nonprofit that supports ALS patients with lots of information and help.

Nell Davies told me that this project was the vision of Gary Sullivan of Standish, who had ALS. He enlisted Orm Irish, who is on the group’s board, and Lee Urban, whose wife had ALS, to establish the organization.

And just to demonstrate that all of us Mainers are connected, I heard from Pam Taylor, someone I’ve known my entire life, that Orm is her partner. They were in Florida when she contacted me, but we’ll be getting together when they get back to Maine.

As I continue down this difficult path, I am so grateful for all the help that is available, a very real blessing.

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

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