KINGMAN - Judy Adams, who has several family members with Huntington's disease, is reaching out to others in the community who may be caring for a loved one with the genetic condition.
"I want to get the word out. I can't believe how many people have never heard of Huntington's," she said. "I'm trying to put together a Huntington's support group."
Huntington's disease is an incurable neurological disorder similar to Parkinson's disease. Adams' first experience with the disease was when her husband started exhibiting symptoms at the age of 35.
"It wasn't that much of a surprise. His brother had it and his father had it," she said. "We knew it was a possibility."
What really broke Adams' heart was finding out that both her son and daughter have the defective gene that causes Huntington's.
According to the Mayo Clinic's website, the disease is caused by a malfunction of a gene that mutates a protein and causes it kill brain cells instead of helping them. Approximately one in every 10,000 Americans has the disease. Every child born to a parent with the disease has a 50/50 chance of inheriting the faulty gene and developing the disease.
"If you have the gene, you're going to get the disease," Adams said. "It'll wipe out my whole family."
Symptoms of the disease usually show up between the ages of 30 and 34. Men and women are equally likely to get the disease.
Adams' daughter started showing signs of the juvenile form of the disease at the age of 16 and her son at 18. The juvenile form is usually more aggressive.
Adams' daughter is now 34 and in a wheelchair.
Her son still has some mobility and is cared for by his wife.
The disease attacks the brain first. The first symptoms - changes in mood, behavior and the ability to problem solve or think - are often dismissed.
It's not until more severe symptoms - such as a lack of coordination, an unsteady walk and jerky body movements - that a person is diagnosed with the disease. The symptoms progress to the point that a person can no longer walk, bathe or feed themselves.
At the same time, they develop dementia.
There is no cure for the disease but there are drugs that help with some of the symptoms.
"The disease is really devastating. They give you roughly 10 years to live from the time you're diagnosed," Adams said.
But it's not the disease that kills you. It's the increased susceptibility to falls, pneumonia and heart disease that usually kills a Huntington patient.
The disease also takes a toll on caregivers, which is why Adams is starting up a support group.
"You have no social life," Adams said. "My whole world revolves around taking care of her. Some days I feel like I'm the only one left in the world.
"Don't get me wrong. I love her. She's my daughter and I will care for her as long as I can. I wouldn't change that. It's hard, so hard."
Adams does get some relief from her niece and hospice care, who look after her daughter while Adams goes to work.
To contact Adams about forming a Huntington's support group, call (928) 530-2295.