Dickie Mae Martin’s hands move uncontrollably. She thought it was just a nervous reaction of some sort, until she was diagnosed with Huntington’s disease two years ago. Hand twitching is an early symptom of the disease for most people.
Martin, 67, lives alone and can take care of herself, for now. But as the disease progresses, the Grand Junction woman will lose her ability to walk, think, talk, reason and swallow.
Huntington’s disease is a neurological, familial disease passed from parent to child through a mutation on the fourth chromosome. Children of an HD parent have a 50-50 chance of inheriting the gene, which causes degeneration of brain cells. Onset of the disease most often occurs in midlife, but can also occur in childhood or old age.
Martin has a daughter who lives in Los Angeles, a son in Grand Junction and a daughter who died of breast cancer two years ago. The son works for the oil and gas industry seven days a week, and she seldom sees him.
In 2003, Martin married Don Martin, who had never been married before. In 2008, they divorced. They’re still friends — “the way we should have left it I guess,” Don Martin said.
He said he realized before the HD diagnosis that married life wasn’t for him, but the prospect of Martin slowly dying of HD, and becoming totally dependent on him, was more than he had bargained for. The two have remained friends, however.
“I’m glad we did get divorced. It wasn’t feasible for him to take care of me long term,” Martin said.
About one in 10,000 Americans have the disease. Because of the brain cell degeneration, people with HD are often mistaken for being intoxicated. People have also been misdiagnosed with insanity.
Twelve to 15 people attend the Grand Junction support group, which meets the last Tuesday of every month at First United Methodist Church, 522 White Ave., from 6:30-8 p.m.
Don Martin accompanies Martin to the monthly HD support group meetings in Grand Junction.
“I’m glad Don wants to hang around and go to meetings. Nobody in my family is around,” Martin said.
A social worker leads the two-hour discussions each month, where people with HD and their loved ones talk about how they’re coping with the disease.
“They’re just helping, and helping and helping,” Martin said.
Last spring, the Free Press published a story about Connie Perea, who had lived with HD for a number of years at home with her family. Perea died two weeks ago at age 44.
Riding for a cure
Charlotte Reicks, 72, and Marie Nemec, 64, are leaving Grand Junction Saturday, May 17, for their 10th annual cross-country bike ride to heighten public awareness of Huntington’s disease and raise funds for family services and research toward a cure.
“It’s been such a blessing. We’ve met so many wonderful people, we’ve seen the U.S. and there’s nothing greater than doing something for a cause,” Reicks said.
The first year, the cyclists raised $3,000. This year the goal is $$81,000 to bring the total amount raised thus far to $500,000.
Reicks and Nemec will depart from Clinton, Mo., May 20 to ride 950 miles through Illinois, Indiana, Ohio and into Pennsylvania, ending near Pittsburgh, where they will attend the 23rd annual Huntington’s Disease Society of America Convention June 6-9.
Famed folksinger Woody Guthrie died of HD, and in 1967 his widow, Marjorie, founded the Committee to Combat Huntington’s Disease, which evolved into the HDSA.
Reicks and Nemec will take turns driving a van with supplies, leap-frogging it across country. Reicks will rise early to start bicycling along a planned route, while Nemec drives the van about 10 miles. Then she parks the van, gets out her bike and begins riding. When Reicks catches up to the van, she loads up her bike and drives it another 10 or so miles down the road.
They spend their nights in churches and with people they know and meet along the way via the HD network.
Once, in Louisiana, they rode across the entire state, staying with members of the same family.
Someone had a cousin 60 miles up the road, whose parents lived up the road from there. And they knew a football player, and his aunt lived a days ride from there, etc.
Saturday, May 17, at 8 a.m. there will be a send-off breakfast for the bicyclists at Sherwood Park in the north pavilion. Donations will be accepted.
Nemec and Reicks will write daily e-mails during their trip, which can be subscribed to by writing Nemec’s husband, Ron, at firstname.lastname@example.org. The ride can also be tracked at www.bikeforthecure.org.
For more information or to make a donation contact Nemec at 434-8323.
Reach Sharon Sullivan at email@example.com.
For more information:
HDSA 1-800-345-HDSA www.hdsa.org
HD Advocacy Center www.hdac.org
HD Lighthouse www.hdlighthouse.org
To donate online go to www.firstgiving.com/bikeforcure