Lucy’s Revenge Caregiver Chronicles: Ocean Springs Couple Fighting Alzheimer’s With Help of Friends and Family

BY: B. Keith Plunkett

You don’t drown by falling into water. You drown by staying there. -- Robert Allen

Cindi and Jon Braud

When I first met Cindi Braud, she floated into our meeting at a coffee shop at the IP Casino, and never sat down. In fact, I’m not sure she even touched the ground. Cindi has been employed at the Biloxi based casino for five years, and is a ball of energy and purpose. She apologized for being a little late, we exchanged business cards and email addresses, and she hurried away for another meeting. I left thinking my first interview for the Lucy’s Revenge Alzheimer’s Paddling Project was a bust. But, I’ve since conducted the interview, and now I know that the reason Cindi doesn’t stop long to reflect is that she is simply too concerned about getting things done to worry much about cogitation.

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. 

Mississippi Paddler to Visit Gulf Coast’s Most Historic River This Weekend

Flora, MS. August 13, 2010—Keith Plunkett, Mississippi paddler and organizer of Lucy’s Revenge, will be continuing his August effort to paddle the Mississippi Gulf Coast by joining friends on the Pascagoula River August 14.

“I have been very much looking forward to the ‘Singing River’,” said Plunkett. “Part of what we hope to do with this project is not only raise funds for Alzheimer’s support services, but to highlight the beautiful waterways in Mississippi, and how those waterways support wildlife and the environment. You won’t find a better place to highlight conservation in the state than on the Pascagoula. I have my camera batteries fully charged and ready for this one!”

Plunkett kicked off a yearlong effort to paddle over 600 miles of Mississippi waterways in July on the Gulf Coast. He will begin focusing on waterways in the East Mississippi Region in September after finishing the Gulf Coast Region this month.

So far, Plunkett has paddled 127 miles and has been on the coastal waterways of Old Fort Bayou, Davis Bayou, Wolf River and the Escatawpa River. He has raised $2,231 for the Mississippi Chapter of the Alzheimer’s Association in the first month.

Spinal-Fluid Test Is Found to Predict Alzheimer’s

Researchers report that a spinal fluid test can be 100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer’s disease.

Although there has been increasing evidence of the value of this and other tests in finding signs of Alzheimer’s, the study, which will appear Tuesday in the Archives of Neurology, shows how accurate they can be. The new result is one of a number of remarkable recent findings about Alzheimer’s.

After decades when nothing much seemed to be happening, when this progressive brain disease seemed untreatable and when its diagnosis could be confirmed only at autopsy, the field has suddenly woken up.

Alzheimer’s, medical experts now agree, starts a decade or more before people have symptoms. And by the time there are symptoms, it may be too late to save the brain. So the hope is to find good ways to identify people who are getting the disease, and use those people as subjects in studies to see how long it takes for symptoms to occur and in studies of drugs that may slow or stop the disease.

Researchers are finding simple and accurate ways to detect Alzheimer’s long before there are definite symptoms. In addition to spinal fluid tests they also have new PET scans of the brain that show the telltale amyloid plaques that are a unique feature of the disease. And they are testing hundreds of new drugs that, they hope, might change the course of the relentless brain cell death that robs people of their memories and abilities to think and reason.

“This is what everyone is looking for, the bull’s-eye of perfect predictive accuracy,” Dr. Steven DeKosky, dean of the University of Virginia medical school, who is not connected to the new research, said about the spinal tap study.

Dr. John Morris, a professor of neurology at Washington University, said the new study “establishes that there is a signature of Alzheimer’s and that it means something. It is very powerful.”

A lot of work lies ahead, researchers say — making sure the tests are reliable if they are used in doctors’ offices, making sure the research findings hold up in real-life situations, getting doctors and patients comfortable with the notion of spinal taps, the method used to get spinal fluid. But they see a bright future.

Although the latest PET scans for Alzheimer’s are not commercially available, the spinal fluid tests are.

So the new results also give rise to a difficult question: Should doctors offer, or patients accept, commercially available spinal tap tests to find a disease that is yet untreatable? In the research studies, patients are often not told they may have the disease, but in practice in the real world, many may be told.

Some medical experts say it should be up to doctors and their patients. Others say doctors should refrain from using the spinal fluid test in their practices. They note that it is not reliable enough — results can vary by lab — and has been studied only in research settings where patients are carefully selected to have no other conditions, like strokes or depression, that could affect their memories.

"This is literally on the cutting edge of where the field is,” Dr. DeKosky said. “The field is moving fast. You can get a test that is approved by the F.D.A., and cutting edge doctors will use it.”

But, said Dr. John Trojanowski, a University of Pennsylvania researcher and senior author of the paper, given that people can get the test now, “How early do you want to label people?”

Some, like Dr. John Growdon, a neurology professor at Massachusetts General Hospital who wrote an editorial accompanying the paper, said that decision was up to doctors and their patients.

Sometimes patients with severe memory loss do not have the disease. Doctors might want to use the test in cases where they want to be sure of the diagnosis. And they might want to offer the test to people with milder symptoms who want to know whether they are developing the devastating brain disease.

One drawback, though, is that spinal fluid is obtained with a spinal tap, and that procedure, with its reputation for pain and headaches, makes most doctors and many patients nervous. The procedure involves putting a needle in the spinal space and withdrawing a small amount of fluid.

Dr. Growdon and others say spinal taps are safe and not particularly painful for most people. But, he said, there needs to be an education campaign to make people feel more comfortable about having them. He suggested that, because most family doctors and internists are not experienced with the test, there could be special spinal tap centers where they could send patients.

The new study included more than 300 patients in their 70s, 114 with normal memories, 200 with memory problems and 102 with Alzheimer’s disease. Their spinal fluid was analyzed for amyloid beta, a protein fragment that forms plaques in the brain, and for tau, a protein that accumulates in dead and dying nerve cells in the brain. To avoid bias, the researchers analyzing the data did not know anything about the clinical status of the subjects. Also, the subjects were not told what the tests showed.

Nearly every person with Alzheimer’s had the characteristic spinal fluid protein levels. Nearly three quarters of people with mild cognitive impairment, a memory impediment that can precede Alzheimer’s, had Alzheimer’s-like spinal fluid proteins. And every one of those patients with the proteins developed Alzheimer’s within five years. And about a third of people with normal memories had spinal fluid indicating Alzheimer’s. Researchers suspect that those people will develop memory problems.

The prevailing hypothesis about Alzheimer’s says that amyloid and tau accumulation are necessary for the disease and that stopping the proteins could stop the disease. But it is not yet known what happens when these proteins accumulate in the brains of people with normal memories. They might be a risk factor like high cholesterol levels. Many people with high cholesterol levels never have heart attacks. Or it might mean that Alzheimer’s has already started and if the person lives long enough he or she will with absolute certainty get symptoms like memory loss.

Many, like Dr. DeKosky, believe that when PET scans for amyloid become available, they will be used instead of spinal taps, in part because doctors and patients are more comfortable with brain scans.

And when — researchers optimistically are saying “when” these days — drugs are shown to slow or prevent the disease, the thought is that people will start having brain scans or spinal taps for Alzheimer’s as routinely as they might have colonoscopies or mammograms today.

For now, Dr. DeKosky said, the days when Alzheimer’s could be confirmed only at autopsy are almost over. And the time when Alzheimer’s could be detected only after most of the brain damage was done seem to be ending, too.

“The new biomarkers in CSF have made the difference,” Dr. DeKosky said, referring to cerebral spinal fluid. “This confirms their accuracy in a very big way.”

NYT

Lucy's Revenge Tops $2K in General Donations in First Month

Thanks to a great many friends, both old and new, for helping us reach the two-thousand dollar mark in general donations for the month of July. We had until today to reach the goal. Sharon sent out a plea over the weekend, and the response was great. As of today, general donations are at $2231.

We appreciate the push to the mark. But, that was lap one of twelve, and our August goal is $3000. We need you to encourage your friends to join us in the effort. Exposure is everything. You'll find a link above to share the website with friends, and the task bar at the bottom of the page offers a quick link to share via Facebook, Twitter and more.

Merchandise is being finalized this week. So check back to order those caps and T-shirts.

Thanks again to everyone for the prayers and support!

Kind commentary on the project from a paddling friend.

Anna Cannington writes a great blog, Kayak Blogs From Mississippi. I always keep a close eye on her posts as she is very much in tune with paddling on the Gulf Coast. My hope is that she will join me for a paddle out to Horn Island sometime this month before I begin focusing more on the East Mississippi Region. That's me in the middle of the picture with Doug Heller and Anna before we launched our kayaks on Old Fort Bayou. Below is an excerpt from a recent post. You can check it out in its entirety and see some pictures HERE.

It was an honor to be a part of Keith and Sharon's kickoff of the Lucy's Revenge Paddling Project. The paddle was the same path as the Battle on the Bayou -- started at Gulf Hills Hotel and ended at the Shed. Doug and I did a shortened version of it, going up halfway and heading back, saving the logistical difficulties of a one-way trip.


I had some thoughts about this intriguing concept that Keith came up with, to embark on a physical journey involving fitness of the body, in order to connect with a mental/emotional/spiritual inspiration involving fitness of the mind. Alzheimer's... a particularly damaging disease of the brain, but just like the body -- can suffer devastating afflictions, or small deteriorizations. Mental fitness is so important. Those of us who get caught up in physical fitness sometimes forget to tend to the mind. Feed it, use it, care for it, nurture it... Your mind and your body need each other and make up YOU.


Related thoughts. Tyler was telling me about adrenaline and how it makes your mind work faster, explaining the slow-motion feeling when you're in the midst of a crisis. Makes me wonder if a lower level of adrenaline is kicking in when I ride my bike, fast pace ride in a paceline when you are so alert at all times. Just afterwards, things seem to move in slow motion. As I'm driving home, everyone is in my way. At home, I trip over the dog... somehow she isn't as quick as usual. I wait for D or T at the sink or refrigerator, why are they taking so long? Everything seems slow. Maybe my brain waves take a while to settle back into a normal pattern.


The mental and the physical. Keith put in his blog "Whatever mental filing or head-work needed to organize a persons hustle and bustle life, it has been my experience that out on the water is not the place to do it. I simply can't. There's too much else to think about. Being on the water strips things down to the bare, meaningful essentials. There is plenty of time for thought, plenty of time for discussion, plenty of time for prayer and meditation. But, no time for false worries, or self imposed problems. It's time for refocusing away from such things." I love this thought and how he expressed it. How true this is of paddling, bike riding, running, hiking... anything where you get away and your activity demands that you focus on it. It's a forced break from what normally weighs you down. I have so many thoughts to keep track of -- things to do at work, issues, lists of things I need to buy, appointments to make and things to arrange, needs of my family, groceries, home care, correspondence, etc. etc. So nice to take breaks from that load.

Read more at Kayak Blogs From Mississippi