May 232012
 
Glen Campbell

Glen Campbell

On Wednesday, May 16, the Alzheimer’s Association hosted “An Evening with Glen Campbell,” an event to raise awareness of Alzheimer’s disease among members of Congress. Held at the Library of Congress, the evening honored country music legend Campbell, who is living with Alzheimer’s disease, and his family.

Actress and philanthropist Jane Seymour welcomed a crowd including members of Congress, staff and their families. Seymour’s husband, James Keach, and his filmmaking partner, Trevor Albert, are making a documentary on Campbell and his family, following their battle with Alzheimer’s disease as Campbell conducts his farewell tour.

The attendees watched a brief film highlighting the state of Alzheimer’s today, revealing statistics from the recently released Alzheimer’s Association 2012 Alzheimer’s Disease Facts and Figures report. The film focuses on the cost of Alzheimer’s to the country, which will total a shocking $200 billion in 2012.

Harry Johns, president and CEO, Alzheimer’s Association, started the program by congratulating the assembled crowd on the release of the National Alzheimer’s Plan the day before.

“The release of the National Alzheimer’s Plan is a huge historic moment for our cause. I want thank of all the members of Congress for their support of the National Alzheimer’s Project Act,” Johns said. “Your leadership has made it possible to have a plan that creates a platform to address Alzheimer’s in America, and we truly appreciate that.”

Johns also talked about the challenge ahead, applauding Campbell and his family for their bravery as they publically face this disease.

“There are 5.4 million people today that have this disease, and because of baby boomers like me, that number is going to grow to 16 million in the next 38 years,” Johns said. “What I want to commend Glen and his family for is announcing his diagnosis and staying in the public eye. It sets a precedent and helps to advance conversation about the cause.”

Congressmen Ed Markey (D-Mass.) and Chris Smith (R-N.J.), longtime co-chairs of the Congressional Task Force on Alzheimer’s Disease, also spoke to the attendees, addressing recent successes in the fight against the disease and looking to the future.

“No coach goes into a big game without a strategy, and now we have a fully integrated plan with public and private stakeholders,” Smith said. “We have worked on this for a long time.”

“These families at home, they are heroes. But heroes need help,” Markey added. “You’ve heard the numbers. We have to give them hope.”

Dr. Ron Petersen, director of the Mayo Alzheimer’s Disease Research Center and a member of the National Advisory Council on Alzheimer’s Disease, gave an update on scientific progress in the field and the ways in which the National Alzheimer’s Plan will help to advance that research.

“Now we have a blueprint, a roadmap, for how we are actually going to get to a cure for this disease,” said Petersen. “The charge is back to us, the charge is back to Congress. I think we’ve done part of the work, but in another sense the work has just begun.”

After Petersen’s remarks, Campbell’s daughter Ashley took to the stage to introduce a sneak preview of the documentary focusing on her father’s farewell tour. She and her brothers, Shannon and Cal, are members of Campbell’s band and travel with him; Campbell’s wife, Kim, is his primary caregiver.

“We decided to go on a farewell tour with him to keep his struggle public,” she said. “We didn’t want people to think they were going through this alone. This isn’t a disease that just affects the person living with it — it affects their entire family.”

After a sneak preview of the documentary, Campbell took to the stage and received a standing ovation. Moving around with the microphone in hand, he was at ease, joking with the crowd and teasing his children. He drew repeated thunderous applause as he displayed his skill with the guitar, performing favorites such as “Galveston,” “Wichita Lineman,” “Rhinestone Cowboy” and “Southern Nights.”

Ashley and her family feel that performing is helping Campbell to face his disease and its symptoms.

“We’ve seen music as a form of therapy on this tour. He seems to be happier, to do better with his memory,” she said. “Happiness is the non-medical medicine.”

Throughout the evening, Campbell reinforced this observation, frequently telling the crowd, “I’m a happy, happy man. Do you want to hear some more?”

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Apr 232012
 

My mother had Alzheimer’s disease, and what it did to her was just terrible. Her mother had it too. A few years ago, my wife, a retired nurse, noticed that I was having short-term memory problems. When I got lost trying to find my way around a familiar hospital campus, we decided that I needed to be medically evaluated. That was in 2010, and I was diagnosed with an “early-stage” memory problem.

A year later, I found out that I carry the ApoE 4 gene, which means I have a genetic risk factor for developing Alzheimer’s disease. This gene was passed down to me from my mother’s side of the family. My doctor informed me that I had mild cognitive impairment, meaning that I was at increased risk for Alzheimer’s. This January, I learned that I had progressed to early-stage Alzheimer’s.

When I was diagnosed, I got very down. But I’m an extremely positive person, and I don’t take “no” for an answer! I said a prayer and asked for help, because I was tired of being negative. I turned things around in one day. I decided that I’ve got Alzheimer’s and it’s got a hell of a fight with me!

I started giving presentations about Alzheimer’s disease. With support from my local chapter, I speak at houses of worship, corporations, community organizations — anywhere that will have me. I do this to raise awareness, and in hopes that there will be a day when Alzheimer’s can be prevented, effectively treated and cured. My kids are in their 40s, and they may have the gene. I do this work for them, and for their kids. I do it for the future.

I will continue to use my voice to fight this disease as long as I can. I will never give up. And I’m hoping you will join me by signing the Alzheimer’s Association Petition for a strong National Alzheimer’s Plan. Right now, I am with hundreds of other advocates at the Alzheimer’s Association Advocacy Forum in Washington, D.C. This week, we will deliver a message to our elected officials that Alzheimer’s can’t wait. You can make that message stronger by adding your name to the petition. To sign, click here.

The more that I’m involved, the more I find that fear is the greatest obstacle to defeating this disease. People don’t want to know how cruel Alzheimer’s is, or what’s coming down the pike if this country doesn’t get a fix on it soon. But together, we can raise awareness and work toward a future where our children and grandchildren don’t have to face this disease.

Today’s guest blog comes from Bill Frost, a member of the Alzheimer’s Association’s® national 2011 Early-Stage Advisory Group, a council that helps the Association raise awareness of the issues faced by people with Alzheimer’s, advocate for research and support programs and provide the best services possible to people with the disease. Diagnosed with early-stage Alzheimer’s in January 2012, Bill is a retired telecommunications executive and consultant. He and his wife of 51 years, Nancy, live in Houston, Texas. They have three children and one granddaughter.

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