Fuller Center cyclists pedal 3,900 miles to assist Windham resident with ALS

Fuller Center for Housing cyclists gather before a leg of their
3,900-mile coast-to-coast journey that took six weeks to
complete this summer. While in Windham, the riders helped
build a new porch for a resident who has ALS and assisted
in making other home improvements for local seniors as
volunteers for the Sebago Lakes Region Fuller Center
for Housing. COURTESY PHOTO       

By Ed Pierce

It’s said that when you give of yourself, that is when you truly give. For 21 cyclists completing a 3,900 mile ride from Seaside, Oregon to Maine on behalf of the Fuller Center for Housing last weekend, they gave everything they possibly could by finishing their journey.

Fuller Center cyclists rode from Fryeburg to St. Joseph’s College in Standish on Thursday, July 28 and then enjoyed a police escort as they made their way to an overnight stop at the North Windham Union Church. There they teamed up with a group of volunteers from the Sebago Lakes Region Fuller Center for Housing on Friday, July 29 for a building project to add a new front porch for John and Linda Gregoire of Windham and other projects.

John Gregoire is wheelchair bound and paralyzed and is unable to speak. He communicates through a laptop and has been suffering from ALS for the past 15 years. In creating the new porch for the family, Fuller Center cyclists and local volunteers updated the Gregoire home to make it safer and more accessible for John, who is now able to roll out onto the porch for fresh air when needed.

“Thank you to the Sebago Fuller Housing Foundation for helping those who can no longer care for their homes and just need an extra heart and hand to bring their home back to its glory,” said Linda Gregoire. “All with consideration of John’s needs, nothing has been overlooked to make this project safe and comfortable for him. This group has given us more than a porch with a second means of egress, they’ve given us a feeling of being cared for and loved. John and I are beyond grateful, humbled and in awe of the kindness showered on us.”

In all, the cyclists and Sebago Lakes Region Fuller Center volunteers worked on eight different housing projects while in Windham before the remaining riders departed for Portland on the final leg of their six-week cross-country ride on Saturday, July 30.

In reaching the Atlantic Ocean, the cyclists wrapped up a coast-to-coast adventure that spanned 14 different northern-tier states and included visits to all of the Great Lakes and an array of locations such as Glacier National Park in Montana, Niagara Falls in New York and Lake Champlain in Vermont.

In Burlington, Vermont, Sebago Lakes Region Fuller Center President Diane Dunton Bruni of Windham joined the group of cross-country cyclists and rode with them on the final trek over to Maine.

The Fuller Center Bicycle Adventure was founded in 2008 as a way to raise funds for The Fuller Center for Housing’s work of partnering with families in need to help them have simple, decent places to live through home repairs and new home construction – through dozens of Fuller Center covenant partners across the United States and in 20 different countries.

Since its inception, the Fuller Center Bicycle Adventure has raised more than $3.8 million for the Fuller Center’s work through the years, including more than $500,000 raised in 2022. Riders also are instrumental in bringing attention and public awareness about the nonprofit’s work through speaking engagements, media coverage and simply by talking with people they meet along the way.

The Fuller Center for Housing was founded in 2005 by the late Millard Fuller, who also created the Habitat for Humanity International initiative. It seeks to end substandard housing and improve the lives of those who may never have owned a home. The group partners with local agencies and volunteers to build or repair homes with partner families who participate in the work and pay the costs forward on a no-profit, no-interest basis that they can afford.

During this year’s cross-country ride, the orange-clad cyclists participated in seven build days at stops they made at Fuller Center locations. In the U.S. alone, there are more than 80 Fuller Center sites, and the number continues to grow every year.

To learn more about project eligibility, to become an active volunteer or to make a charitable donation, visit the Sebago Lakes Region Fuller Center for Housing’s website at sebagofullerhousing.org, send an email to sebagofullerhousinginfo@gmail.com, or call 207-387-0855. <

A Thanksgiving reminder to enjoy what we have, where we are now - despite challenges By Linda Gregoire

Linda and John Gregoire

The following is a letter that the editor, Lorraine Glowczak, asked the author to share with our readers. The editor offers the following introduction to that letter:

As most of us busily prepare and shop for the traditional Thanksgiving feast, we also tend to hurriedly go about checking off the “to-do” list that is a mile long. Sometimes, between the demands of work, family and other community efforts, we can get swept up into all the stresses placed upon us, losing sight of things that we deem important; gratitude and gathering with family (in whatever way family looks for you).

Linda Gregoire of Windham recently shared a letter with her friends regarding her own life as she and her family prepare for Thanksgiving 2017. Although I suspect she does not need an introduction to most of our readers, here’s a little synopsis for those who may be new to the Gregoire family journey.

On December 17, 2007, Linda’s husband, John was diagnosed with Amyotrophic Lateral Sclerosis (ALS). According to the ALS Associations, ALS “is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. ‘A’ means no. ‘Myo’ refers to muscle, and ‘Trophic’ means nourishment – ‘No muscle nourishment.’ When a muscle has no nourishment, it ‘atrophies’ or wastes away. ‘Lateral’ identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (‘sclerosis’) in the region.” www.alsa.org

This hardening and atrophy eventually affects the muscles in the mouth and throat, making the ability to eat for the person with ALS difficult or non-existent. As a result, feeding tubes are put in place to provide the nourishment needed. Five years after his diagnosis, John was required to use a feeding tube.

Linda and John agreed to share her note with our readers on how they will enjoy their Thanksgiving feast in the midst of the challenges ALS presents. 

May the following letter provide a reminder to us all, no matter our own individual difficulties, to be joyful, happy and most importantly – grateful- despite it all.

“I was asked yesterday by the caretaker who installed a new tube feeder how we handle holidays that are celebrated with food. We all want to do whatever we can for our loved ones with a feeding tube to make life easier and normal, so I really appreciated her thoughtful question.

The last 10 Thanksgivings we’ve been faced with small incremental changes that we’ve adapted to because that’s what you have to do with ALS. I always say, ‘if you don’t go with the flow, you get caught in the rip tide.’ If anyone has had the experience of a rip tide you know what I mean - the more you try to fight it, the worse it gets. If you trust and swim in the flow, you’ll be safe. 

So, this morning after I started John’s feed and he fell asleep peacefully while his tummy was being filled, I realized how at peace he is with his current situation. In the beginning with his new tube, we struggled until we got him on a healthy formula. He still ate for pleasure by mouth, so a bowl of pistachio ice cream was eaten while formula was finding its way into his tummy. He had the best of both worlds.

I think the two saddest days for him was when he could no longer eat steak, one of his favorite meals. That came early on, as it’s so hard to chew. 

The next saddest day happened about a year ago when John would sneak a hand cut French fry when Matt [our son] and I ate at Elevation Burger. He choked so bad I almost thought of calling for help. However, once the choking passed he looked at me and shock his head ‘no.’ I asked, ‘No more for now, or no more forever?’ Tears welled in his eyes and I knew - no more forever. We both cried. 

The one thing he still can take by mouth and never chokes on is a small piece of communion bread and a sip of “wine” (grape juice) at church and, God willing, he’ll be able to forever. 

The families' dogs are thankful, too.

So as Thanksgiving approaches, it made me think how we’ve handled the holiday meal. We gather at my sister’s with as many family, friends and dogs as we can squeeze into her home - which can be 20-25 people and up to 9 dogs. 

The food has been mostly grown and raised by my sister and brother-in-law, which is a labor of love. It’s prepared with everyone in mind with oyster stuffing for some and regular stuffing for the rest of us. We all share in bringing what we can, enjoy each other’s company and catching up on life. Then we gather at the table, elbow to elbow and we remember our family that’s with us in spirit and give thanks for those we still have with us to love. 

John is seated at the table with his own spot and place card as he enjoys his ‘dinner’ too. He’s the only one allowed his electronic device because it’s for speaking and he’s the self-appointed one to keep track of the football game for the entire table. That’s as important as cooking the turkey.

We chat, pass food, laugh and, of course, we eat. 

Thanksgiving Dinner is more about who’s around the table then what’s on the table. We feed our bodies and enjoy the food but more importantly, we feed our souls with love and thanks for all we have. 

So, for all our tube feeders, join in the feast and give thanks and feed your soul on love and life. This is what I’m grateful for everyday of the year, not just the days of November. Happy Thanksgiving to you all and God bless you all.” Linda Gregoire

Editor’s note: As we enter the holiday season of giving, please remember to give a financial contribution in the amount that works for you on “Giving Tuesday”, November 28. Give a donation to your favorite non-profit organization or consider giving to John and Linda’s non-profit, Hope-JG. Hope-JG is dedicated to helping families living with ALS and other neuromuscular diseases, live life to its fullest by leveraging existing world class technology, supporting technical innovation and biomedical research. www.hope-jg.org.