Chuck Jackson has lived his entire life dreading the death blow from Alzheimer's disease. Four generations of his family before him have lived under this threat.
As he testified before a congressional hearing on Wednesday, Jackson, 54, sometimes hesitated as he sought words or lost his train of thought, but always managed to get his message across.
Advertisement"It is imperative that Congress increase the federal commitment to Alzheimer research now because I want to be an Alzheimer survivor, much like the breast cancer survivors who are alive because of advances in cancer research and treatment," he told the dozen senators and hundreds of people packed into the hearing room.
Jackson showed a picture of 14 relatives who, like him, had early-onset Alzheimer's, an often overlooked form of the illness that strikes adults in their 40s and 50s.
"We have to quit thinking of Alzheimer's as an age disease," Jackson said. "Our society believes that when a person gets to a certain age and they get Alzheimer's, that's normal ageing. It's a disease, not normal ageing."
Jackson learned in 2000 that he had a gene that gave him a nearly 100 percent chance of developing early onset Alzheimer's. Immediately he began taking medication that had been tested in clinical trials.
"Before I got on this cocktail, I was losing my speech, falling down, showing other symptoms ... If we didn't have what we have now, I wouldn't be able to stand here and talk to people," he told AFP after the hearing.
"I know the medication is working for me but they're not working as well as they did at first," he said.
"It could be that there's more going awry," he added, gesturing toward his head.
Alzheimer's is caused by the build-up of a protein called A-beta in the brain.
"As it accumulates to excessive levels, it short-circuits communication between nerve cells, ultimately killing them," neurologist Rudolph Tanzi of Harvard Medical School said at the hearing.
The result is "major cognitive dysfunction and memory loss," said Tanzi.
In more human terms, the disease takes a "staggering toll on families" and a huge financial burden, former Supreme Court justice Sandra Day O'Connor said.
"The nation now spends an estimated 150 billion dollars each year to care for people with Alzheimer's," added O'Connor, who left the bench in 2006 to care for her husband of 55 years, John, afflicted with the illness since 1990.
Last year O'Connor announced that her husband had struck up a relationship with a woman patient at his care facility.
The former justice wanted to highlight the pain endured by caregivers, who can only watch as spouses forget their long-time partners, parents forget children.
In the United States, where healthcare comes at a premium, Alzheimer's also carries fear of exclusion.
Although early treatment can boost quality of life, relatives of Alzheimer's victims are reluctant to be tested.
"Everyone in the family is a little nervous because of the gene. They fear that, somehow, testing positive would mess up their ability to get health insurance or get a job," said Jackson, who was fired from one job because of Alzheimer's.
"There are some people in our family who carry the name of my mother's family" to fudge any connection with the family genetic quirk, he said.
O'Connor, Jackson and the other panelists urged the US government to boost funding for Alzheimer's, which has remained at around 644 million dollars a year since 2003.
According to an analysis conducted by the Lewin Group, a health care consulting firm, a medical advance that would delay the onset of Alzheimer's by five years would cut the number of victims by 5.3 million by 2050.
That would represent 515 billion dollars in savings for the stretched US health services, Medicare and Medicaid, according to the firm.
But research is expensive, Jackson said.
"If they bury their heads in the sand, they're hoping people will just die in the nursing homes and go away," he said.