BY: B. Keith Plunkett
You don’t drown by falling into water. You drown by staying there. -- Robert Allen
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| Cindi and Jon Braud |
For many people, Alzheimer’s is an elderly person’s disease. Sadly, this misconception may be why some people don’t give it the attention it deserves when considering worthy causes to support. Despite her busy schedule at IP, Cindi is out to change all that. Alzheimer's is a disease of the brain that causes problems with memory, thinking and behavior. It is the seventh leading cause of death in the country and the fifth leading cause of death for those over age 65. Contrary to public opinion, it is not a normal part of aging and currently the cause of Alzheimer's disease is unknown. What many people don’t understand is that a growing segment of those diagnosed are much younger than 65. Cindi’s husband Jon is among that group. Jon Braud was diagnosed at the age of 40. He is now 42.
Cindi explains that the diagnosis was not a complete surprise. The Ocean Springs couple knew the genetics were there, and that the disease could touch them as it had prior generations of the Braud family. Jon’s father was diagnosed at the age of 44, a mere 23 months before his death. Likewise, Jon’s Grandmother and a cousin were taken by the disease at the ages of 50 and 51, and a Granduncle died just after turning 40. It was because of these familial reasons that Jon and Cindi decided early on not to have children. The chances were simply too great that the Alzheimer’s disease gene would be passed along. Early Onset Alzheimer’s Disease (EOAD) is more about genetics than any other subset of the disease. The couple made a conscious effort to end the disease in the Braud family with Jon.
The decision the Braud’s made to forego having children is an honorable one and one of necessity. It illustrates how Alzheimer’s is not only affecting individuals and their caregivers, but also generations of entire families. Strides have been made in the past decade to ease the affects of Alzheimer’s symptoms with some success, but there is still no cure. Cindi believes the lack of knowledge keeps medical professionals out of the fight. The Braud’s have visited a few medical facilities with less than supportive results. Just last July, Jon’s Neurologist summed up the current lack of medical resources when he told him, “Its Alzheimer’s, I’m sorry there is nothing I can do for you.”
Other facilities also found reasons not to help the Braud’s. The Lou Ruvo Brain Institute in Las Vegas turned the couple away because they did not live in Nevada. An administrator at the famed Mayo Clinic said, “We’re not the miracle hospital everyone thinks we are.” And, the Pennington Bio-Medical Center in nearby Baton Rouge summed up what those with EOAD face in the competitive research money race. Simply put, they said, “There is no money in saving the 1% with the disease.”
But, if there is one thing Cindi Braud is, it is persistent. She, along with 50 family members and friends, has embarked on a crusade to email every medical facility and doctor associated with Alzheimer’s at every University in the country.
“I hope that they will be so inundated with emails regarding Jon and us asking for help that someone might be able to. Squeaky wheel gets the grease,” she said.
Cindi is also hoping to toy with a few egos and the facilities desire to compete for research dollars. She says it has already worked with UCLA.
“UCLA told me there was nothing they could do for us and they referred me to a doctor at UCSD. I emailed UCSD, and they replied with a ‘yes’ as they are doing stem cell research,” says Cindi. “When we concluded our conversation (UCSD) copied the doctor at UCLA (on the email). Within 2 hours I received a phone call from UCLA inviting us out there for research.”
Cindi’s employer has joined in the fight. IP Casino’s Benefits Manager has helped with everything from insurance questions to accommodating Cindi through Family Medical Leave. IP is also donating $10K to the Alzheimer’s Association (ALZ) and will hold signups for teams for an Alzheimer’s Association Memory Walk in November. In January the company will hold an event to promote awareness and provide information for Gulf Coast residents.
The Braud’s are not alone in their inability to find resources. Here in Mississippi, an estimated 148,000 caregivers are working tirelessly to provide for the 53,000 loved ones affected by the disease with little or no support. Only now are medical facilities beginning to recognize the dire need across the state, and that the disease takes a toll not only on the patients, but on those working hard to provide care.
“There is no assistance on the Gulf Coast for our situation,” says Cindi. “When I first called ALZ in September 2009 they asked me if I had my financial affairs in order and had I picked out an assisted living facility. That was unacceptable to me. It’s one of the many reasons I fight so hard.”
“I want to change the way ALZ responds when someone is calling for help,” she added. “When you hear the diagnosis for the first time you already understand the finality of the disease. Tell me who is willing to fight it, cure it…not, ‘have I picked out his tombstone?’.”
Cindi’s investigation into the disease continues to show the need for more awareness in the medical community. She says that people continue to be “shocked” when she tells them her 42-year old husband has the disease, “Most people, including doctors look at me like I’m crazy.”
Studies have been started and stopped over the years with little sharing of information. Cindi says that at least one University, UAB, destroyed the outcome of a retired doctor’s research on the genetics of EOAD.
Cindi relates the story, “In 1998 UAB was conducting a study on Jon’s family and sent his cousin a letter. She was shocked to receive the letter and knew nothing about the study. A med student named Kathryn Hanson came to Baton Rouge to meet with some family members and they never heard from her again. I contacted UAB to see if anything had been concluded with the study. No one knew who Kathryn Hanson was nor did they know about the study.”
Cindi eventually found an email address for one of the doctors mentioned in the study, and he informed her that since his retirement UAB had destroyed his research. Further attempts to get the research or have Jon added to clinical drug qualifications have been unsuccessful.
"Any clinical trial drug qualifications start at the minimum age of 50,” says Cindi. I have yet to find anyone at UAB that can give me any information regarding their study on Jon’s family.”
Jon did not qualify for three other trials at UAB due to his age and they were unwilling to make an exception. The Braud’s have found that going through their doctor and following normal protocol does not get them very far. Yet, they continue to fight.
“My husband’s motto is ‘play to win’,” says Cindi of her former High School and College athlete husband. “It has a new meaning now. I do not stop thinking about this. It’s 24/7 with me. What can I do to help him? Who can I call or write to?”
Despite the numerous setbacks, Cindi’s tenacity has had some pay off. Jon was recently enrolled into the Dominantly Inherited Alzheimer’s Network (DIAN). The world-wide study by Washington University in St. Louis, Missouri is studying Amyloid Beta protein in the brain and the possible connections to Alzheimer’s.
She continues to fight every day. She fights for what little time she has left with Jon, she fights for disability benefits for her husband, and she fights for a doctor to help him. One thing is certain: Cindi Braud does not take no for an answer, and in the fight against Alzheimer’s that is a good thing.
