Woman Fights for Normal Life : Health: While the test for Huntington’s disease has about 98% accuracy, she refuses to let its positive diagnosis dictate her life. To prove it she got a dog and bought a house.

When Susan Caldwell decided to learn if she carried the gene for Huntington’s disease, she also bought a house and got a dog.

She named the dog Lucky, not so much to express her optimism over the testing, but as a “hope for the future.”

Susan, a 27-year-old software programmer, is one of almost two dozen people who have undergone genetic testing at the Georgia Mental Health Institute for Huntington’s, which causes the deterioration of the brain’s neurons and is one of the few genetically linked diseases receptive to a predictive test.

But while the test has about 98% accuracy, she refuses to let her positive diagnosis dictate her life.

“I’m not resigned to it,” Susan said. “It’s frightening. But I’m very aware that a lot of things before then could determine my fate.”

Now, she grabs whatever control she can over her health. She doesn’t smoke, and she rarely drinks--”I can’t spare the neurons,” she jokes.

But her ultimate act of gaining control was the decision to find out if she carried the renegade Huntington’s gene, which derails the mental and physical functions of its victims--and previously claimed the lives of her uncle and maternal grandfather.

Susan never knew the grandfather, who died of Huntington’s at age 54. Apparently, the family didn’t then understand the implications of the illness. It took her uncle’s mind and then his life, also at age 54, before Susan’s mother realized the same disease could strike her family.

In her early 20s, Susan watched her mother fight what appeared to be symptoms of early Huntington’s--the odd, puppet-like movements, the behavioral changes.

The discovery of a tumor in her mother’s brain at first gave Susan a weird sense of relief, but a visit after its removal in November, 1991, left her in no doubt. Her mother had Huntington’s; Susan, too, was at risk.

“I was struggling with the knowledge that she had the disease, and the knowledge of the 50% possibility that I was at risk,” she recalls.

After her mother’s official diagnosis in July, 1992, Susan learned of a test that could tell her if she were likely to develop Huntington’s. She contacted genetic counselor Randi Jones at the Georgia Mental Health Institute, but couldn’t bring herself to follow through.

“It was ‘life and death’ for awhile, then I’d have to drop it,” she said. “As much as I thought I wanted to know, I had to break from it.” She would schedule appointments with Jones, only to cancel them.

Susan confronted her own mortality. At first, she considered moving out West and living a “no roots” life. She gave up her apartment, packed most of her belongings and cut off many of her friends.

“I just had this overwhelming fear of missing life,” she said.

But over a six-month period, something changed. She felt a need to commit to the future, to her future.

In January, 1993, after searching for a new apartment, the self-described “nest-builder” bought a townhouse in suburban Atlanta, complete with a 30-year mortgage. She planted flowers and grass, taking satisfaction from digging in the earth and watching seeds take root.

Finally, she decided she was ready for the testing.

“I had to know, no matter what the test results were,” she said.

But then came another delay. In March, 1993, researchers announced a breakthrough--they had found the Huntington’s gene. A new test--one that could predict with almost certainty--would be available soon in Atlanta.

Susan waited another nine months, but the time simply strengthened her decision.

Before she was allowed to undergo the necessary blood tests in February of this year, she had been required to participate in a process called genetic counseling, which involves helping patients decide whether they want to be tested and then how to cope with the result.

For Huntington’s, it also involves extensive neurological and psychological tests, to see if the patient has any symptoms of the disease.

Five weeks after giving two blood samples, on March 17, Susan learned her results. She “cried some,” she says, but felt relief that her worst fear--an inconclusive result--didn’t come true.

“I don’t think the decision to test is right for everyone,” she said. “But I had to have an answer. I’m a real black-and-white kind of person.”

The deterioration generally starts when the sufferer is in his or her 40s and, so far, Susan doesn’t have any symptoms. She sometimes worries and suffers insomnia, but denies being obsessed.

“If I do something clumsy, I’ll think about it. . . . It’ll always be there,” she says of knowing she has the gene.

But the waiting is over. Susan doesn’t count her days, and she looks forward to her future. She now dates, and worries about her yardwork and plants.

“Life is playing with my dog, cutting my grass, talking with my neighbors,” she said. “I’m really lucky. I wouldn’t ask for the experience, but I’ve been fortunate. Life doesn’t stop.”