Nancy Patterson of Ellsworth was just about certain she had the gene mutation for Huntington’s disease. After all, her grandfather and her mother both died with the inherited neurological illness.
Her own chances of developing the progressive, disabling and untreatable symptoms were 50-50. The genetic testing she agreed to, back in the 1990s, was merely a formality.
“I was sure I had it,” she said. “So it was just going to be a confirmation of what I already knew.”
But Patterson, who now chairs the Maine chapter of the Huntington’s Disease Society of America, was wrong. Her DNA test back in the mid-1990s was normal. She would not live out her final years with the debilitating physical, psychiatric and cognitive losses that characterized her mother’s — and her grandfather’s — final years with Huntington’s.
On Sunday, Sept. 18, Patterson, 63, will host the sixth annual “Team Hope” fundraiser in Maine for Huntington’s disease, a 3- to 10-mile walk, run or bike ride along the Down East Sunrise Trail in Ellsworth. Money raised will help fund research, education and family support, here in Maine and across the country, for the relatively rare disorder that affects an estimated 4,300 Mainers and 30,000 Americans.
Huntington’s is perhaps best known as the disease that ultimately took the life of famed folksinger Woody Guthrie. Symptoms most often begin in young adulthood with subtle changes in personality, concentration and mood. Over time, other signs develop, including impaired judgment, altered spatial perception, loss of mental capability and loss of physical coordination. Death typically results from falls, choking, pneumonia or malnutrition. There is no cure, although some medications can make symptoms more tolerable. The rate of suicide is relatively high among people with Huntington’s disease.
Patterson, recently retired from a career in public education, said her personal experience provided the opening she needed to learn more about the condition that has plagued her family for generations and continues its devastating course into the future.
While her own DNA test was negative, others in her family are not so fortunate. Ten years ago, a close family member began exhibiting symptoms, including the jerky, uncoordinated gait and spastic movements known as Huntington’s chorea. Her normally optimistic and sunshiny personality faded; she became manipulative, suspicious and depressed. Even her voice changed, taking on the sing-song quality associated with the early stages of Huntington’s.
Yet this person, who lives in Massachusetts, has not been able to acknowledge her symptoms, their cause or their likely course. Such denial is not uncommon for those affected by Huntington’s, Patterson said, her eyes filling with tears.
“You have someone leaving you but you can’t say goodbye, or tell them you’ll be there to walk down the road with them,” she said.
More recently, Patterson’s nephew began exhibiting some of the same dreaded behaviors. It was his open admission of his disease, about a year and a half ago, that catalyzed Nancy Patterson.
“My nephew really freed me,” she said. “He is the first person in my family to openly confront this illness.”
Last year, Patterson took over as chairwoman of the Maine affiliate of the Huntington’s Disease Society of America. Since that time, she has become an informed advocate for patients and caregivers, started a support group in Bangor and hosted educational outreach sessions. At recent national conferences, she has learned about promising new research, medications, technologies and personal coping strategies that can improve the quality of life for individuals affected by Huntington’s disease.
Because its symptoms may be confused with those of alcoholism and mental illness, and because it is incurable, Huntington’s disease has historically been shrouded in silence, stigma and secrecy, Patterson said. But for members of her own family and others whose lives are in turmoil due to the effects of the disease, she said, knowledge can inspire hope.
For years, “Huntington’s has been like a black curtain over my life,” she said. But after learning more about the disorder, she said, “it feels more like a veil I can see through, with hope and promise on the other side.”
To register for the Team Hope fundraiser in September or to learn more about support groups and other help for people affected by Huntington’s Disease in Maine, contact Nancy Patterson at firstname.lastname@example.org or 669-5212. Information also is available from the websites of the Huntington’s Disease Society of America and the Mayo Clinic.