Lucy’s Revenge Closes in on $10K, Breaks 300 Miles in Alzheimer’s Fundraising Effort

Mississippi Paddler asks East Mississippi health care officials and residents for help.

Flora, MS. October 19, 2010—Keith Plunkett, Mississippi paddler and organizer of Lucy’s Revenge, has paddled over 300 miles in the yearlong effort to raise money for and awareness of Alzheimer’s Disease on Mississippi waterways. Joining a group of eight other kayakers on October 16, Plunkett launched from Bell Fontaine Point in Ocean Springs in route across the Mississippi Sound to Horn Island. Plunkett says he was driven to paddle a few extra miles while out on the island in order to be sure he met the 300-mile mark by the time the group may landfall to end the trip.

“South Coast Paddling Company and Mississippi Gulf Coast residents have been a huge help to the project on the coast and I wanted to be sure and hit this milestone there,” said Plunkett. “The Horn Island trip was a South Coast Paddling sponsored trip, so they did all the planning. I hadn’t mapped it before hand, and I wanted to be sure I got the mileage in.”

With that worry in mind, Plunkett awoke on the west end of Horn Island on Sunday morning and decided to put in a few extra miles before joining back up with the group. Paddling south of the island to Buoy 1 at Dog Keys Pass, he added an extra 6.6 miles, and had some unexpected but welcome company on the way back to the island.

“The first buoy is a little over 3 miles south of the island out into the open Gulf,” said Plunkett. “It was a little nerve wracking to look back and see Horn Island as a little speck behind me. I felt pretty small and vulnerable out there. But on the way back I got an escort from about 8 to 10 bottlenose dolphin, and that helped calm my nerves. They are beautiful animals.”

When Plunkett landed again at Bell Fontaine Point on Sunday afternoon he had logged another 29.5 miles bringing his totals for the project to 305.8.

The Flora resident began kayaking just over a year ago and says he wasn’t around the water much as a child, but is growing more confident in his paddling ability every day.

“In mid-July I thought I had reached the far reaches of my distance for a weekend paddling trip when Sharon and I floated a 45 mile trip on the Wolf River. Less than two months later we kayaked over 86 miles from Shubuta to Leaksville on the Chickasawhay River. About a week ago, I paddled in the Ninth Annual Phatwater Challenge on the Mississippi River. On that trip I managed to paddle nearly the same mileage that had taken me a full three days only three months earlier, and I did it in less than 6 hours. My ability and confidence has grown by leaps and bounds.”

Plunkett kicked off a yearlong effort to paddle over 600 miles of Mississippi waterways in July on the Gulf Coast. A goal he says he now expects to exceed by the projects end date in June 2011. He began focusing on waterways in the East Mississippi Region in September, but due to drought conditions and interest from other parts of the state he’s not done as much in the area as hoped.

“East Mississippi has many of the jewels of our state’s paddling waterways,” he said. “I really need some more help from East Mississippi, and some sponsors to step forward. This disease knows no boundaries. I know there are people and caregivers there that need the support, and I want to be there.”

So far, Plunkett has been on the coastal waterways of Old Fort Bayou, Davis Bayou, Wolf River, Escatawpa River and the Pascagoula River. He has paddled sections of the Pearl River, Strong River and Mississippi River. He and wife Sharon also completed an 86-mile trip on the Chickasawhay River in East Mississippi on Labor Day Weekend. Plunkett has raised $8,600 for the Mississippi Chapter of the Alzheimer’s Association since July while paddling through 14 Mississippi counties.

Stories, videos, and photos are posted to the website, www.lucysrevenge.com . General Donations and Sponsorship Opportunities links on the website connect donors directly to the Alzheimer’s Association website.

The project is named in memory of Plunkett’s Grandmother, Lucy Plunkett, who suffered from Alzheimer’s before succumbing to the disease in 1993. The matriarch of the Plunkett family reared six children, and oversaw the upbringing of 9 grandchildren. She was a housewife and an active member of her church and the rural community of Little Yazoo in Yazoo County.

Thanks to Ashlee Clapper, Lynn Boykin and Girl Scout Troop 5375 for the Strong River of Memories.

I am incredibly behind on posting Trip Logs, and editing photos and video. I have recently downloaded some software for video editing. Provided I can figure that product out, I will have something more than the raw footage of some of the trips to post. At the very least I should be able to get some slideshows up soon. With respect to my Trip Logs; I have a few, but even the ones that are complete could use another edit.

Yes. I am behind schedule--story of my life!

Keith Plunkett and Ashlee Clapper

But, I had to take a time out here to say a big thanks to Lynn Boykin and her Girl Scout Troop 5375 for helping out with the project. Ashlee Clapper (I kept calling her Ashlee Cooper, Sorry Ashlee) is one of her girls who needed to put together a project for her Silver Award. I am extremely grateful that she picked Lucy's Revenge as her outside project. Ashlee managed to get the largest number of paddlers we have ever had for a paddle for her project called Strong River of Memories. Also participating were parents, siblings, and both the Development Director and Executive Director of the Mississippi Chapter of the Alzheimer's Association.




Now that's a good looking group of paddlers!



It was a beautiful day, a beautiful river and a beautiful group.

More to come. . . eventually.

Thanks,
Keith.

Report: Alzheimer's disease causes global financial burden

The cost of caring for people with dementia around the world tops $600 billion according to a report released Tuesday. "70 percent of the costs occur in Western Europe and North America," according to the report.

With the release of the World Alzheimer's Report 2010, Alzheimer's Disease International (ADI), a consortium of 73 non-profit Alzheimer's groups from around the world, is trying to raise awareness about the global financial burden caused by dementia.

Each year ADI issues a report on September 21, which has been designated as World Alzheimer's Day.

Last year's annual Alzheimer's report estimated that 35.6 million people would be living with some form of dementia in 2010 and predicted that this number would nearly double in 2030 and reach 115.4 million in 2050.

The new report calculates the cost of medical care as well as the cost of formal services and informal services provided by family members. Researchers estimate the total cost of care just for this year will be $604 billion, which they say is equal to the gross domestic product (GDP) of what would be the 18th largest country or about 1 percent of the world's GDP.

The United States ranks highest when comes to the cost of caring for a person with dementia, which comes to more than $48,000 according to the report. Caring for people with dementia is least costly – just $903 according to the new data – in South Asian countries like Bangladesh and India.

In this report, ADI is calling on all governments to do more to recognize dementia as a health priority and invest more in prevention and developing plans for caring for the millions more who will get this disease in the coming decades.

"The U.S. is unprepared to handle the massive human and economic burden that is building as a result of the growing number of people with Alzheimer's disease," Harry Johns tells CNN. Johns is the president and CEO of the Alzheimer's Association, one of the members of Alzheimer's Disease International. He notes that the U.S. government annually spends $6 billion on cancer research, $4 billion on heart disease research, approximately $3 billion on HIV/AIDS, which he says are all good investments and have led to lives being saved. However, when it comes to Alzheimer's research, Johns notes that funding by the National Institutes of Health is only $469 million per year.

ADI suggests in this report that many governments are unprepared to meet the challenges they face with a growing population of people with dementia. The Alzheimer's Association in the United States points out that 6 other countries, including France, England and Australia do have national Alzheimer's plans, but the United States does not. Legislation called the National Alzheimer's Project has been introduced in Congress.

CNN

Sometimes what makes these trips so special are the little things.

Critters big and small are everywhere on the Chickasawhay River:




An abundance of minnows offer the mullet and other species of fish plenty to feed on in the Chickasawhay:



A school of mullet swimming upriver in the Chickasawhay at around Mile 12. The mullet are extremely aggressive in the East Mississippi river:

Alzheimer's Support from IP: $10,000 for Gulf Coast Memory Walk

The Alzheimer’s Association Gulf Coast Memory Walk has
received a show of support in the form of a $10,000 sponsorship
from the IP Casino Resort Spa. The contribution marks the first
of its size for the Walk and is demonstrated in the larger than
life-sized check that is displayed by, from left, Sara Murphy
and Ian MacDonald, both of the Alzheimer’s Association;
Cindi Braud, 2010 Gulf Coast Memory Walk ambassador; Jon Braud;
Patty Dunn, Alzheimer’s Association executive director; and
Elaine Stevens, IP public relations manager.

A presentation at the Alzheimer’s Association Mississippi Chapter office in Ridgeland Sept. 7 demonstrated a show of support from IP Casino Resort Spa as the company joins in the fight against Alzheimer’s disease. The support came in the form of a $10,000 donation designated for the upcoming Gulf Coast Memory Walk set for Nov. 13 in Biloxi.


Motivation for the support stemmed from a diagnosis of early onset Alzheimer’s. When Cindi Braud, an IP casino host, and her husband Jon shared his diagnosis, the company immediately made plans to work with the couple.

According to Cindi and Jon, “We are very excited to work with the Alzheimer’s Association and look forward to promoting awareness for this disease. In addition, we are overwhelmed by the support IP Casino has given us and are forever grateful to IP for their commitment to Alzheimer’s awareness.” Cindi is serving as the 2010 Gulf Coast Memory Walk Ambassador.

"IP always takes care of its own, and Cindi Braud is a vital part of the IP family. When we discovered her husband Jon was diagnosed with early onset Alzheimer’s, IP’s partnership with the Alzheimer’s Association was a given. We are proud to support Cindi, Jon and the many thousands of others impacted by this dreaded disease,” said Elaine Stevens, IP public relations manager.

In accepting the donation, Patty Dunn, the chapter’s executive director, said, “We welcome this generous show of support in our efforts to enhance the care and support for those affected by Alzheimer’s disease. Alzheimer’s disease is an escalating public health crisis that has far-reaching effects on individuals, families and businesses. This donation from IP Casino Resort Spa represents the beginning of a partnership to increase concern and awareness for Alzheimer’s disease and the efforts of the Alzheimer’s Association.”

On hand for the check-presenting occasion were Ms. Stevens, Cindi Braud, Jon Braud, and Tina Cantrell, executive casino host. Representing the Mississippi Chapter Alzheimer’s Association were Ms. Dunn, Sara Murphy and Ian MacDonald.

Ms. Dunn pointed out that every 70 seconds someone develops Alzheimer’s disease, and in Mississippi, it is estimated that 53,000 individuals are living with Alzheimer’s disease.

First paddle in East Mississippi Region will be longest yet.

I've just completed marking out my topo maps for the Trip On the Chick. This is going to be a heck of a trip. The weather apparently will be good, and the temps will be incredible. Sharon and I will need it, because the mileage I have measured is 86.51 miles.

The trip appears to have plenty of landmarks on the upper end. But, on the lower end, when our bodies are worn down and some landmarks would help our mental state, there will be none. The last 22 mile section has one landmark utility line to let us know we are two miles from the takeout. The other 20 miles is nothing but wilderness and sandbars. This one will be a test of our mental strength. I'll likely save a little battery for my GPS so I can have a fallback in case Sharon and I get ready to kill one another.

I took a moment last night to shoot a video in our garage after getting a few pictures of the signatures on the kayak. It's hard for me to believe that some of them will make it through a trip this daunting without scrubbing off. So, I wanted some shots to remember them all. You can see the pictures of the signatures on our Facebook Page.

Here's the video I shot. The lighting isn't great in the garage at night.

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.