Iris Campbell speaks out about her husband's fight with Alzheimer's
For the first time since former Governor Carroll Campbell's death, his wife is sharing her story about his fight with younger-onset Alzheimer's disease. The Alzheimer's Association is grateful to Mrs. Campbell and all the Campbell family for being ambassadors for the cause. Thanks also to WISTV for this great coverage to raise awareness about how Alzheimer's disease is affecting South Carolinians! Read the full story by WISTV, reprinted below.
Carroll Campbell's wife speaks for the first time since his death
Posted: April 8, 2009 04:05 PM
COLUMBIA, SC (WIS) - It has been almost four years since the death of former Governor Carroll Campbell. His legacy is that of a strong statesmen, a keen businessman, and a devoted family man. For the first time since his death, his beloved wife, Iris, is speaking out and hoping to bring awareness to Alzheimer's with her very personal, private story.
"It's been three years, haven't been able to talk about it. All of a sudden, he'd want me to get a grip," said Iris. So Iris Campbell grabbed onto efforts to help raise money for programs and research. Alzheimer's took not only her husband, but most recently, her mother.
"It's a terrible disease. I think everyone should stop and look at this at some point in their life they'll have some they love come down with this disease," said Iris. The numbers are staggering. In 2000, 67,000 people were diagnosed with Alzheimer's. That's expected to nearly double to 100,000 by the year 2025.
Keep in mind there's still no cause and no cure. "When you have cancer, which is so horrible, there are drugs that are there to treat it. We still don't have treatment for that, all you can do is get in programs," said Iris.
After the governor's diagnosis, programs taught the Campbells how to establish a daily "routine" of activities: golf and family. "He recognized the boys, but I wasn't sure how much he remembered with the boys. And he loved seeing the grandchildren. His face would light up," said Iris.
But the disease progressed and Iris became the primary caregiver. "I thought I was Superwoman. I could take care of him by myself and I did. I kept him home for six years," said Iris.
Those private, painful years are why Iris has become an ambassador. "The whole family, sons are involved, we do what we can. We promised their dad we'd do that," said Iris.
Reported by Hannah Horne
Posted by Jeremy Turnage
http://www.wistv.com/Global/story.asp?s=10152395
Persons with Dementia Speaking Out
There are many experts who teach us about Alzheimer's disease—so many wonderful books and resources with the "do's and don'ts" lists of communication strategies and ways of interacting with persons who have dementia. There is so much, in fact, that we can easily become overwhelmed with trying to remember them all. We often become filled with tension as we attempt to navigate through the "should's" and "shouldn'ts" and search for The Expert or The Magic Bible for dementia care that we miss the heart of the matter: that our true learning can only come with opening our hearts to interacting with and listening to persons who have dementia.
An opportunity for such learning was provided at the recent SC Alzheimer's Association 20th Annual Conference in Greenville, SC. I had the pleasure of facilitating a discussion with Aline Soutter and Gordon Meier as they spoke out about their perspectives on living with Alzheimer's disease. Both Aline and Gordon are in the early stage of dementia and are wonderfully articulate in describing how they first became aware that "something was different"—the moment that led each to get checked out by the physician who diagnosed the disease. Each is tenderly self-disclosing in describing some emotional impacts, several effects on the relationships in their lives and the decreased passion for participating in activities that used to hold great interest. With all the changes and losses, however, Aline and Gordon provide us all with strong messages as to how to enter life more fully.
Gordon's philosophy is very clear: "In the end, something will kill you. Disregard that aspect. In the time you have, take full advantage of it and practice pushing yourself mentally. Don't be a virtual curl-up in a corner. Make the most of each moment. At times, I am infuriated when I have a misfire and say the wrong word or am clumsy and frustrated. What I try to do is to say, 'Here I am, what do I do now?'" What Gordon realizes is that "The mind is like a muscle. Just because it is sore doesn't mean you don't exercise it!" For Gordon, learning metalworking (he was "never a craft-type person before this") and exercising his brain with a computerized game system helps him to keep going and stay away from the "mulleygrubs" of negative thinking.
Aline strongly agrees with the need to remain physically and mentally active. "Hang onto good habits—they will always serve you well," she advises. For example, Aline makes sure she walks every day ("…although not as long and far as I used to!") and emphasizes the importance of consistency, such as "making sure you keep things in the same place so you know where to find them! Doing lots and lots of reading and writing each day" have become particularly important to her in keeping mentally active. "It's important to journal my thoughts, what I understand and feel…as a gift to give the children. It's important to teach them about who I am and what I am about before the strings to this puppet are cut. It will help the children know where they came from and who they are. I cannot stress this enough."
"There's still a person, here!" states Aline very clearly after noting how people around her can often look at her "differently" or "with a questioning" when she has difficulty finding a word or repeats statements. Gordon mentions that his church congregation tends, at times, to not want to talk about it. He occasionally feels motivated to round the group up and say "I'm not a blue-green man made of cheese!" They have found their Alzheimer's Support Groups to be helpful because it is a forum where they always find people to interact with in an open, respectful, attentive, nonjudgmental and caring way. Aline and Gordon underline what persons with dementia have been teaching me for over 20 years—that the person with dementia always has the ability to feel joy and satisfaction from being in the rhythm of connection with others.
Aline and Gordon so beautifully bring us back to the awareness that we have long underestimated persons with dementia. In their unique and delightful ways, each helps guide us to living more fully in each moment and to honoring the importance of sharing and maintaining connections with others. We can begin to see how our caregiving role needs to be shifted to understanding our caresharing role, for we are gaining just as much within these relationships. Indeed, persons with dementia are teaching us to embrace life with all its wrinkles, creaks, limitations and deficiencies and to find meaning, love and joy in each moment of small pleasures and wondrous connections. Thank you, Aline and Gordon, for the moments we have shared and for your willingness to be our teachers and inspiration.
[This article was written by Nancy Pearce, LISW-CP, a geriatric consultant in Taylors, SC and author of Inside Alzheimer's: How to Hear and Honor Connections with a Person who has Dementia.]
Scholarships Available for Project Lifesaver in the Charleston Area
Project Lifesaver is a rapid-response partnership with law enforcement that works to recover missing persons with medically diagnosed conditioned, such as adults with dementia or children with a disorder like autism or Down syndrome. The program works by tracking radio signals emitted by a wrist or ankle bracelet worn by the patient.
Charleston County sheriff's deputies have been training to use the tracking system, which has been established in Charleston with the help of a Justice Assistance Grant. They have 10 scholarships available to provide Project Lifesaver bracelets to vulnerable individuals at risk for wandering or becoming lost.
For more information, call Charleston County victims services at 745-2250. For the program's Web site, go to http://www.projectlifesaver.org/.
Research Study on Assisted Living and Dementia: Family Members Sought for Interviews in Lowcountry
Susan Kelsey, a Ph.D. student in the Arnold School of Public Health at the University of South Carolina, is studying the effects on family members of having to move relatives from assisted living facilities to units that specialize in caring for people with dementia, sometimes called "memory care units." Ms. Kelsey would like to interview relatives of people who were asked to make this type of move in order to learn more about their experiences. The purpose of this study is to help families who will have to make these moves in the future and to help administrators of assisted living facilities to improve these moves. You may be eligible if you:
- have placed a parent, spouse or other relative in an assisted living facility and
- subsequently had to move your relative to a memory care unit.
The interview will take about 45 minutes and will be conducted in the Lowcountry region at a convenient time and location. Initial inquiries and all comments during the interview will be completely confidential. If you are interested, please contact Ms. Kelsey at 843.363.5412 or kelsey5@hargray.com.
A VACCINE FOR ALZHEIMER’S: An Update on New Research Trials
Warachal Faison, MD
Clinical Director
Alzheimer’s Research & Clinical Programs
Medical University of South Carolina
A Vaccine for Alzheimer’s disease. . . .Could this be? Vaccines have been developed for small pox, influenza, polio, hepatitis, measles, rubella, mumps, and other diseases. Often when people travel out of the country, they receive a number of vaccines to protect themselves against diseases. Given that Alzheimer’s disease affects greater than 5 million people in the United States and it is anticipated that these numbers will triple by 2050, Alzheimer’s disease is indeed a public health concern. Research efforts have been underway for several years to develop a vaccine to fight against Alzheimer’s disease.
Although there is no cure for Alzheimer’s disease, it is believed that deposits or plaques of amyloid (pronounced am′-uh-loyd), a protein that gathers in the brain, are the core of the disease. These amyloid plaques keep our brains from functioning properly—causing memory loss and confusion. Research is underway to develop medication treatments such as oral medications and vaccines that are aimed to reduce or prevent amyloid deposits in the brain.
HISTORY OF ALZHEIMER’S VACCINE DEVELOPMENT
For the past several years, scientists in medical research centers and pharmaceutical companies have been investigating vaccines for Alzheimer’s disease. There have been research trials that investigated vaccines infused into the blood stream, vaccines administered through a skin patch, and vaccines administered through nose drops. Vaccine trials have been conducted in both mice and humans. One research trial that made some important strides in our understanding of Alzheimer’s disease was an investigation sponsored by Elan and Wyeth pharmaceutical companies in the early 2000s involving human participants. This study was stopped in 2002, however, when some patients developed brain inflammation (infection).
A follow-up of participants in the study revealed that some of the participants may have actually benefited from the vaccine. Data suggested that some participants receiving the vaccine may have had improved memory as compared to those participants who did not receive the vaccine (placebo). Some patients who received the vaccine also appeared to have reduced amyloid deposits when their brains were examined via autopsy.
CURRENT NEWS
A number of pharmaceutical companies and medical centers have continued to forge ahead and developed other AD vaccines. Elan Pharmaceuticals, Inc. is currently sponsoring a clinical research trial which investigates a new vaccine called bapineuzumab (pronounced bap-e-new′-zoo-mab).
Bapineuzumab is expected to reduce the amount of amyloid deposits in the brain. The vaccine used in this trial is referred to as passive immunotherapy because scientifically developed anti-amyloid antibodies (substances that are aimed at destroying the amyloid deposits) will be directly infused into the participant’s bloodstream with the goal of clearing existing amyloid deposits and preventing the development of amyloid deposits.
Although this vaccine update is quite hopeful (quite hopeful indeed), it is important to realize that there are several years of vaccine development ahead before we can go to our doctor and get a prescription for an Alzheimer’s disease vaccine. Yet, participation in research trials offers participants and caregivers the ability to 1) contribute to science, 2) assist researchers and clinicians in finding out new information about Alzheimer’s disease, and 3) play an active role in our fight to stamp out Alzheimer’s disease!
MUSC ALZHEIMER’S RESEARCH UPDATE
MUSC’s Alzheimer’s Research & Clinical Programs has been chosen to participate in two vaccine research trials. One of these vaccine trials includes the new vaccine, bapineuzumab, which is mentioned above. Another vaccine trial is being sponsored by the National Institutes of Health. Additionally, Alzheimer’s Research & Clinical Programs has research trials investigating new oral treatments for Alzheimer’s disease. We are recruiting participants that have Alzheimer’s disease for research trials now! As with any treatment, there are risks and benefits and patients/caregivers should involve their primary care physicians as well as other support networks in their decision-making.
Alzheimer’s Research & Clinical Programs continues to take the lead in cutting edge Alzheimer’s research and we are pleased to continue our commitment to educating the public about the latest treatments and research developments. There is no cost to participate in research trials (includes research trial medication, examinations, laboratory tests) conducted in our office. Caregivers appreciate the support and 24-hour access to our clinical staff.
For more information on Alzheimer’s research trials, please contact MUSC Alzheimer’s Research & Clinical Programs: 843.740.1592
