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Living with Huntington’s Disease |
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By Sharon Sullivan |
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Free Press Staff Writer |
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When she noticed her speech starting to slur, and began having
involuntary movements of her arms and legs, Genevieve Crumly knew she
had the same disease that killed her father in 1986 at the age of 46.
Two years ago, Genevieve, 39, was diagnosed with Huntington’s Disease —
a fatal, degenerative brain disorder that slowly destroys both body and
mind. Her mother, Pauline Crumly, knew she had it long before the
diagnosis.
“I noticed it in 1994; her depression, her mood swings; it’s a gradual thing,” Pauline said.
Huntington’s Disease is a familial disease, passed from parent to child
through a mutation on the fourth chromosome. Each child of an HD parent
has a 50-50 chance of inheriting the disease. HD usually strikes
victims between the ages of 30 and 50, although onset can occur in
childhood or old age.
Genevieve suffers memory loss and has problems concentrating. She often
drops things. Now that she can no longer drive or work, Genevieve
depends on her 65-year-old mother who calls her from work to remind her
to eat. Genevieve was denied disability insurance.
“If she didn’t have me she’d be homeless,” Pauline said. “It’s so hard to get disability.”
Genevieve doesn’t yet have the flailing arms and legs typically
characteristic of HD. She’s surprisingly cheerful considering her
problems, and is attentive and engaged in the conversation. Although
her speech is clear, there’s a slight slur in her voice. She worries
about the future. She wants friends. She had hoped to marry someday.
That’s not feasible now, said her mother, about marrying.
Pauline and Genevieve are obviously close. Pauline looks at
Genevieve and smiles, saying, “We get along well, don’t we?” They enjoy
going to theatre performances at the Cabaret.
“I’m working, but I try to spend as much time ... time is slipping,” Pauline says, her voice breaking.
Genevieve loves going to all the JUCO baseball games. She remembers going to JUCO games with her dad Lonnie.
“He loved JUCO. He used to take time off to go,” Genevieve said.
After his disease had progressed and he needed full-time care,
Genevieve took care of her father — from March to November 1986 — while
her mother worked to support the family.
“When my husband had it we didn’t know anyone. We thought we were the only ones,” Pauline said.
In 1999, Pauline heard about a Huntington’s Disease support group for
people living on the Western Slope. She and Genevieve rushed to a
meeting.
“That helps me the most,” Pauline said. She believes there are others who could benefit from the support group.
The group meets the last Tuesday of the month, except for this month;
they meet May 23. The meetings, which are held at First United
Methodist Church, 522 White Ave. at 6:30 p.m., draw people from
Collbran, Cedaredge, Montrose, Rifle and Grand Junction.
For generations, HD was regarded as a mysterious and shameful
affliction. Today it is recognized as a more common genetic disease.
When Pauline married Lonnie they didn’t know about HD. The disease has
often been misdiagnosed. Lonnie’s mother had mistakenly been committed
to a psychiatric hospital. After discovering similar symptoms between
several related family members, it was realized that his mother had HD.
Pauline likes to get whatever foods Genevieve wants because she knows
there will come a time when she won’t be able to swallow anymore.
Inability to swallow is one of the symptoms of HD.
“We’ve been through it before, we know what is coming,” Pauline said. |
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