It’s such a good idea, someone must be doing it,” Hartford’s Sonja Hakala told her brother Mark. He had been skimming an AARP magazine and found an article about people donating small quilts for Alzheimer’s patients. Their own mother lay in bed, too weak from Parkinson’s disease to move under the full-size quilt Sonja had made for her—but what about a lap quilt? “You could do this, Sone,” her brother said. And she did.
Sonja is known as a fountain of ideas, both of projects and of how to accomplish them. She’s written and produced books on publishing, and she works helping authors develop and publish their books. She saves some of her ideas for her own novels—the third in her series about fictional Carding, Vermont, will be out this fall—but is always ready to try something new. When her brother suggested small quilts, she had recently created a quilting book for Wiley’s “Teach Yourself Visually” series, so her quilting interest naturally blended with her concern about Parkinson’s patients.
“We don’t realize how heavy a quilt is,” Sonja explains. “Two layers of fabric, plus seams, plus the batting—it adds up.” Parkinson’s disease can produce a wide range of symptoms, but uncontrollable muscles are a characteristic problem. Muscles may become rigid, or they may succumb to continual tremors—either way, their unreliability causes people to give up trying to do things, causing muscles to atrophy. The cruel disease, whose cause is unknown, is like a slow version of Lou Gehrig’s disease. Parkinson’s is progressive, incurable and widespread.
Spurred by her brother’s comment, Sonja made her mother a smaller quilt, sufficient cover during the hours her mom spent in a recliner chair. With light batting, sparse quilting (so the quilt remained flexible) and jazzy colors, the quilt was a boon to body and spirit. So the Parkinson’s Comfort Project was born.
Project receives state and national recognition
Sonja has always been a leader, perhaps the result of growing up the oldest of six. “I gave away the first quilts in April of 2011,” she recalls, “at a talk in a symposium run by Dartmouth-Hitchcock’s Parkinson’s Center. Then I started telling others in my quilt guild and quilts started being handed to me.” Soon she had set up a 501(c)(3) non-profit to run the project, and the networks of both quilters and Parkinson’s patients and their caregivers were spreading the word. The project has given away about 250 quilts by more than 50 quilters since its inception. When Sonja gets involved with something, she tends to write a book about it, and sure enough, her latest book is Piecing for Parkinson’s, which gives step-by-step directions for six different quilts, copiously illustrated with photographs.
“People find out about us at symposiums, or from our website, or they hear about it from friends,” says Sonja. At the end of last year, Sonja presented the project on national TV, on the show “Sewing with Nancy.” The result was an uptick in quilts arriving, and in requests. Earlier this year, the project was selected as the Non-Profit of the Year, by the Vermont Quilt Festival in Essex Junction, the oldest and longest-running quilt show in New England.
Shortly after her mother’s death, Sonja ran across Wilder resident Lynn Bohi in the Upper Valley Food Coop. They talked about the lap quilt idea. Lynn is on the community service committee of Northern Lights, the local quilting guild. “Quilters I know are very giving,” Lynn says, adding with a laugh. “Many of us enjoy putting fabric together, and you can only have so many quilts in the house.” She recounts the story of one of her gifts to the Parkinson’s Comfort Project: “In a magazine I found a pattern I really wanted to try—I thought it would use up some scraps [this comment causes quilters to laugh]—and I kept sewing because it was interesting and fun, and then I had two quilts! I only had batting for one, so I finished that one, and about a month later Sonja gave me batting for the other one. At one of the support group meetings a man was trying to choose a quilt, and I asked him which one he liked. He said, ‘I like the one on that woman over there,’ and it was my quilt there was a second copy of!”
Such moments are what make Sonja call the project “very rewarding,” but the rewards are emotional, and the project runs purely because of the efforts of Sonja and her family, husband, Jay Davis, and son, Jesse Davis. Donations are few even though they’re tax-deductible, and it costs money to mail quilts, to keep the website up, to travel to support groups or quilting events for publicity. It’s on Sonja’s to-do list to solicit for a sponsor, “perhaps a fabric company or a sewing machine company,” she muses. Meanwhile, she tackles work for the project as she tackles making a quilt. “I never keep track of how long it takes to make a quilt,” she says. “If you knew how long it took you, you wouldn’t do it!”
Anyone is welcome to donate a quilt. Size recommendations are available on the website: http://parkinsonscomfort.org/. The Project hosts two “Piecing for Parkinson’s” community sewing days a year. The next one is in early November.