Plains to Lakes

As Seen in...

Local family opens up about
struggle with Huntington's Disease

Sharon Sullivan
Grand Junction Free Press
Staff Writer

GRAND JUNCTION, Colo. — Scott Lampton's involuntary, jerky movements have subsided some since the Free Press first interviewed Lampton two years ago. He takes medicine for that now; it doesn't stop the spastic motions entirely but they have lessened.

Lampton, who was diagnosed with Huntington's Disease in 2008, can no longer swallow, another symptom that occurs later in the progression of the disease. Lampton receives nourishment through a feeding tube.

When Lampton, 47, and Rebecca married in 2004, they had never heard of Huntington's Disease. The neurological disease is passed genetically from parent to child; the onset of the disease most often occurs in midlife. Lampton was adopted and never knew his biological family's medical history.

Huntington's Disease causes degeneration of brain cells, resulting in loss of ability to walk, think, talk, reason and swallow. Lampton uses a walker now, and Rebecca Lampton stays close by his side to try and prevent falls which have been happening frequently.

Rebecca, 46, works as a substitute teacher's aid sometimes, and is Lampton's primary caregiver. There are constant doctor's appointments and medications that Lampton takes including Prozac to control his panic attacks; medicine to help him sleep at night; and the drugs that help control the involuntary jerky movements of his arms and legs.

A professional caregiver comes to the home five days a week for two hours to give Rebecca a hand. Her mother also helps out when Rebecca works. Rebecca's son also helps with Lampton's care.

Lampton can still speak, although it takes a lot of effort and some days he chooses not to, like a day last week.

However, when asked if he attended an Arlo Guthrie concert last month at the Avalon Theatre, Lampton gave a thumbs up.

Whenever the folksinger comes to town, members of the Huntington's community attend and have a private meeting with him afterward. Guthrie's father, the legendary Woody Guthrie, died of Huntington's Disease during an era when few people were aware of the disease and it was commonly mistaken for insanity.

“Arlo shook hands with Scott,” Rebecca said. “I'll never forget the look on Arlo's face — it was very much a look of compassion. I wondered if he was remembering his dad.”

Lampton spends his days mostly listening to talk radio, and watching golf on television.

About one in 10,000 Americans has Huntington's Disease. It's hard to know how many people in Grand Junction live with the disease, said Marie Nemec, who rides her bike across country each year to raise money and awareness for research for a cure. She estimates there are about a dozen people in the valley with Huntington's.

A support group for those afflicted, and their family members meet once a month at the First United Methodist Church, 522 White Ave.

The Lamptons learned three weeks ago they were awarded a scholarship to attend the 26th annual Huntington's Disease Society of America convention, held this year in Minneapolis June 24-26.

Rebecca said she looks forward to learning more about how to cope with the disease. She's also hoping to meet some of the friends she's made on Facebook, who are dealing with Huntington's Disease.

Meanwhile, Rebecca remains upbeat and takes one day at a time.

“I can't sit around and cry all the time,” she said.

“It's God's will. It's just what he's been given in life. He brightens up when we're going to church.”

Biking cross-country

Grand Junction residents Charlotte Reicks, 75, and Marie Nemec, 57, are about to embark on their 13th long-distance bicycle ride to raise awareness of Huntington's Disease and raise money for family services and research toward a cure. Each year the two women “leap frog” along a pre-determined route — with one woman riding her bike while the other drives a support van with food and supplies. They spend nights in churches along the way.

This year's “Plains to Lakes” ride leaves from Belle Fourche, S.D., June 12. The duo will wind through North Dakota ending in Minneapolis June 23 for the annual national convention of the Huntington's Disease Society of America.

Nemec will write an account of each day's progress and highlights of the trip that people can access by e-mailing Nemec's husband, The ride can also be tracked on the Internet at

The Grand Junction women will be joined this year by Gary Heiman of Ohio, an experienced cyclist whose wife works for an Ohio chapter of Huntington's Disease Society of America.

To make a donation visit, or send checks payable to “Huntington's Disease Society of America” to Plains to Lakes, c/o Marie Nemec, 3087 A 1/2 Road, Grand Junction, CO 81503-9678.