Mar 112014
 

A few weeks ago, I developed a cough. I went to the doctor, they checked everything out and sent me home. But I wasn’t getting better. I started to worry when the cough got really bad and I was having a hard time breathing.

I called my son, who told me that if it didn’t get better, I should go to the emergency room. By three in the afternoon, I was still Cynthia_alz_bloghaving trouble breathing, so I took a cab from my home in a retirement community to the emergency room.

As with most emergency rooms, the waiting room was pretty full. I checked in, waited my turn and was finally called in.

My first stop was a little room where I talked to someone who got all of my billing and insurance information squared away. She asked me if there was anything she should know about my health history.

“Yes,” I said. “I have Alzheimer’s disease, so you might have to explain things more than once and go slow. And if something is really wrong, you will need to call my son to explain everything.”

She responded with, “You sure don’t look like you have Alzheimer’s!”

My next stop was intake, where I encountered the same question – is there anything the nurse should know?

I went through my spiel again, letting the woman know that I have Alzheimer’s disease and may need to hear things more than once and to call my son if there was a very serious or complicated issue. “I can’t believe it. You just don’t look like you have Alzheimer’s!”

Then, the doctor came in. He, too, asked if there was anything he should know about my health history. I told him about my Alzheimer’s and explained that even though I had been a nurse for many years, sometimes I just don’t understand. He said, “You’ve gotta be kidding me! You don’t look like you have Alzheimer’s!”

This conversation was repeated three more times that day – with the respiratory therapist, another nurse and an x-ray technician. Needless to say, having six different health care professionals tell me that I don’t look like I have Alzheimer’s disease was surprising and a bit troubling.

What exactly does someone with Alzheimer’s “look like?” What should I look like? Should I be unresponsive to my surroundings and bed-bound in a nursing home? Should I be incoherent and confused about where I am?

Understand that I was treated with the utmost respect and kindness by everyone in the emergency room, both before and after I told them I had Alzheimer’s disease. They even took an extra step to show me to my taxi back home so that I didn’t get lost along the way. My experience was a positive one – but it is a telling example of how deep stigma runs with this disease.

The fact that even health professionals – who should know more about this disease process than the average person – were surprised by seeing someone with Alzheimer’s who is vibrant, energetic and articulate speaks volumes.

I hope medical professionals at all levels make an effort to better understand what Alzheimer’s disease “looks like.” I hope that people in the early stages of Alzheimer’s share their diagnosis with more people. This disease may be fatal, but it doesn’t start with bed bound patients and utter confusion. It starts with people like me, who have a face, name, opinion and fulfilling life.

During my visit to the emergency room, I had a meaningful conversation with the x-ray technician, who was one of the people who told me I didn’t look like I had Alzheimer’s. Whenever I speak in public or speak as an advocate for Alzheimer’s awareness and the Alzheimer’s Association, I ask people to remember me. But before I could even ask, she said, “I will always remember you. When I am feeling down, I will think of you and of today and I know it will help me.”

It made my day to know I could positively influence someone’s life – and it keeps me motivated to advocate and share my story so we can end the stigma associated with this terrible disease.

 

About the blog authorCynthia Guzman is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG) and is actively involved with the Northern California and Northern Nevada Chapter of the Alzheimer’s Association. As an Advisor, Cynthia wants to do her part by spreading awareness about Alzheimer’s and reducing the stigma attached to the disease. Cynthia believes in early diagnosis and the importance of educating physicians on the best ways to support an individual throughout the diagnostic process. Cynthia lives in Napa, California. She has three children and three grandchildren.

This post originally appeared on www.alzheimersblog.org.

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Feb 212014
 
wanda_young

Volunteers – both with and without Alzheimer’s disease – are needed to participate in actively enrolling clinical trials about Alzheimer’s and related dementias. Recruiting and retaining trial participants is one of the greatest obstacles to developing the next generation of  treatments and possibly future cures for Alzheimer’s and other dementias.

TrialMatch® is a free matching service that connects individuals with Alzheimer’s and other dementias, caregivers, healthy volunteers and physicians with current clinical studies. With a database of 130+ Alzheimer’s clinical trials, including both pharmacological (drug) and non-pharmacological (non-drug) studies being conducted across the country, TrialMatch is a unique opportunity to make a difference in your life and the life of others with Alzheimer’s disease.

The Alzheimer’s Association spoke with TrialMatch user Wanda Young regarding the benefits of her participation in these clinical studies. Wanda is caregiver for her husband, mother and brother, all of which have forms of dementia.  She is participating in clinical trials as a healthy volunteer.

Wanda initially called the Alzheimer’s Association to receive information about brain donation and was told about TrialMatch. “I Cwas interested in the opportunity because I wanted to learn; I’m always trying to learn more. I’m actually taking a psychology course right now, studying the brain. My kids think I’m a bit of a geek, always trying to absorb the most I can about a subject… Education is the key to everything.”

“TrialMatch allowed me to plan my days as a caregiver better. It helped me take a look at myself and how I was coping, and how I could better care for my loved ones. TrialMatch prepared me for what to expect and how to respond as my family members progress with their various dementias. The TrialMatch experiences allow me to think further beyond today and into the future.”

Wanda says that she saw the TrialMatch process not only as an outlet, but as a helpful planning tool that allowed her to plan major life decisions. “My time at the computer is my time alone and my time away from everything else I am experiencing. Using the computer on my own schedule is an easy way to receive new information. The studies I participated in helped me write my advance directive and allowed me to look at my own life and health. I also received tips for managing the medications of my family members, as well as helpful information about daily toiletry, tactful ways to redirect, travel to doctor appointments and so many helpful resources for each of them (my husband, mother and now my brother.) These are not easy tasks. They take time to complete, and only someone in my situation knows what it is like.”

Whether you are a caregiver, someone with Alzheimer’s or other form of dementia, or even a loved one of a caregiver or person with dementia, you are needed for future research. “I wish more physicians knew about TrialMatch and could tell their patients and their families about it. I used to have my own business; needless to say, my life is very different from what it used to be. Caregiving takes a major hit on your self-esteem. As a caregiver, I have gained a lot of weight due to the stressors in my life.  Without a support group or outside help, you can begin to feel like a non-entity, like you don’t exist. Thankfully I have been able to join a support group and have participated in groups at the Alzheimer’s Association to help with these feelings.”

Wanda recognizes that the more that she learns, the more she can change her life and the lives of others. TrialMatch educates caregivers and offers researchers valuable information only caregivers and those with Alzheimer’s  and other dementias can provide. “I believe I have become an advocate,” Wanda says. “I read, I experience, I learn, and I take what I know back to the nursing home to help those in need. I share what I have learned with the staff, other caregivers, the residents and their family members. You don’t feel so far-removed from researchers when you are able to participate in a trial. I felt as though someone heard me, and that in itself is empowering. TrialMatch has been a way to de-stress. Being a caregiver is a full-time job. People don’t realize how difficult it is. It is important that caregivers have a voice.  I thank TrialMatch for giving me this platform.”

Ultimately, the goal is always the same. “The TrialMatch studies help caregivers cope with the difficult task of taking care of our loved ones. You feel less alone, and more educated. You feel like someone cares – and understands. Ultimately, the reason anyone should participate is to get us closer to a cure. The goal is always to find a cure.”

 

Wanda Young has been married to her husband Lou, a former teacher, mentor and coach for nearly 30 years. They have two wonderful sons. Wanda participated in the Medications Assistance study and the Relationship between Chronic Stressors and Eating Behaviors in Dementia Family Caregivers study through the Alzheimer’s Association’s TrialMatch® program. She is the primary caregiver for her husband, her mother and her brother.FOTFE12_A

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Feb 142014
 

Dr_Monica-ParkerDuring Black History Month, the Alzheimer’s Association spoke with Dr. Monica Parker, an African-American family physician, caregiver and assistant professor of medicine about her passion for providing communities with local resources. The theme throughout all of her research and work in the field is simple: Education.

Board certified since 1990, Dr. Parker has practiced primary care and geriatric medicine in rural Georgia and urban Atlanta. Since 1995, she has been practicing with Emory Healthcare, often speaking on the importance of Alzheimer’s education. Dr. Parker has witnessed firsthand what needs to be done to get black communities involved in research through clinical trials.

“We need to educate and better equip our primary care providers,” states Dr. Parker. “If more providers are provided the tools to properly screen geriatric patients for dementia and given knowledge of community resources for their families, we will have better outcomes for the public. We need to better understand healthy aging overall.”

Dr. Parker stresses that education is key. She noticed that most of her upper-middle class white patients were being screened every year as part of a clinical research study at Emory’s Wesley Woods Center, and learning about better lifestyle habits. She knew that these same habits needed to be created and maintained in black communities.

“We needed – and need – to implore more people of color to become involved in clinical trials. We need them to complete memory assessments. Thankfully more and more people in the community have access to these opportunities. It is great to observe the excitement they have in becoming involved.”

Many people in the community were not involved in studies simply because they were not asked. “African-Americans are not unwilling. People were not aware of the need for study volunteers. In fact, African-Americans are very concerned with making things better for the next generation. They don’t want their children to face the same hurdles.”

African-Americans have a higher rate of vascular disease and are two times more likely to develop Alzheimer’s than whites, so the time to get involved is now. “The biggest issue is poorly-controlled vascular disease,” Dr. Parker says. “We know that there is a gene that creates a predisposition to Alzheimer’s. MRI’s can show brain infarcts, which are caused by poor brain blood flow. Hypertension, diabetes and hypercholesterolemia are risk factors for decreasing brain circulation commonly manifested as strokes, or TIA’s. Education keeps people aware of these risk factors and lets them know where to turn and what questions to ask.”

The call to action must be verbalized and disseminated throughout communities. “Churches are the first place people in the community go to seek help and comfort. Church may not be prepared to take on questions about Alzheimer’s and to provide the necessary support. Many smaller congregations have no formal adult daycare program. Pastors want to help identify people in the community that need assistance. They are now able to develop relationships with health providers and offices of Aging. Congregations have hosted forums to let people know what dementia is – and what it is not. In these programs, the average person learns where to obtain information to help cope.”

Since 2010, Dr. Parker and her team have developed community forums, funded  in part and supported  by the Alzheimer’s Association, to inform about the Emory Alzheimer’s Disease Research Center and ongoing clinical studies. These studies have included an African-American Caregiver study, a study about normal women’s aging, and a cerebrospinal fluid (CSF) biomarker study comparing CSF of Caucasians and African Americans with family histories of Alzheimer’s disease. Dr. Parker and the Emory Alzheimer’s Disease Research Center (ADRC) have established these educational forums as one strategy that serves as an excellent mechanism for recruitment of volunteers for clinical studies.

According to Dr. Parker, many of the participants in the COOL-AD African-American Caregiver Education study in the Emory School of Nursing study viewed their participation as an opportunity for getting assistance and as a “service” provided by Emory – not simply as research.

One of the biggest and most immediate concerns still surrounding African-American research is the establishment of a national brain registry.  The Emory Alzheimer’s Disease Research Center has had four African American families donate the brains of loved ones for the study of Alzheimer’s Disease in the last two years. These persons were active research participants before their deaths. This provided an opportunity to learn about their disease trajectory. The brain autopsy is important because the dementia observed may have a different pathologic origin in this population. Dr. Parker has a passion for this work, but she also knows that the decision to donate the brain of a parent or loved one is a difficult decision. Whether a person chooses to donate their brain for research or not, the more information provided to communities about the long-term value of these studies will result in more trials, further research and a possible cure that will secure the health of future generations.

Monica W. Parker, M.D., is an Assistant Professor of Medicine in the Division of Geriatrics and Gerontology at Emory University. Dr. Parker participates in a biyearly lecture series funded by the Georgia chapter of the Alzheimer’s Association. Dr. Parker received a National Institute of Health (NIH) Minority Supplement award to study dementia in ethnic persons in the Emory Alzheimer’s Disease Research Center (ADRC). She also takes her lectures on the road through the Registry for Remembrance, an academic community partnership that helps educate and recruit African-Americans for long term research participation at the ADRC. She is currently a Co-PI on a 3.5 million dollar grant awarded to Emory School of Nursing by the NIH – National Institute of Nursing Research (NINR).

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Jan 222014
 

Charles WarnerTwo years ago, at the age of 69, I was diagnosed with Alzheimer’s disease. Shortly after receiving the diagnosis, I began to think a lot about the future. The more I thought about the future, the more I realized that I needed to implement plans for the inevitable progression of the disease while I had the ability to do so. This also seemed much more proactive than just sitting around worrying about having Alzheimer’s.

Prior to my diagnosis, I was a practicing attorney in civil litigation for 45 years.  During my career, I did not worry too much about what the future held for me and my family. I simply assumed that I would sell my law practice, and, on occasion, hire myself out as a private mediator of legal disputes. I had been working as a mediator for many years and was certain that I would continue after I closed my actual law office. That, of course, did not turn out as expected.

Accept Your Diagnosis        

As a person living with Alzheimer’s, I have learned that acceptance is essential in making meaningful plans for the future. I know it may be difficult, but accepting the reality of the diagnosis is absolutely necessary to enable those of us living in the early stage of the disease to take the appropriate steps to plan for the future. You want to do this now while you still have the capacity to make your wishes known and have them memorialized in legal documents. While it is important to plan for the future, do not let the fear of the future ruin the life you can live now before the disease progresses.

What does it mean to “plan for the future?” In my opinion, among other things, this means to see to your estate planning. Estate planning is the preparation of wills, trusts, advanced health care directives, and generally what you wish to have happen with all of your assets and possessions upon incapacity and/or death. Collaboration with a legal professional is not required in order to plan for your legal and financial future. You can find copies of advance directives and other estate planning forms through the American Bar Association, office supply stores and your state’s health department or local library.

If you choose to work with a professional, a well-qualified legal advisor can help you prepare the required documents.  Locate an elder law attorney who has expertise in the preparation of the documents necessary to carry out your wishes as to the disposition of your real and personal property. Attorneys doing this type of work usually describe themselves as having expertise in “Estates and Trusts.”

Family and Financial Matters

Discuss your estate plan with your family.  Make a list of the assets you possess. What are they worth? Use the legal and financial worksheet to help you organize this information and share it with your family or your lawyer of choice.

I personally found a great deal of peace in completing the legal documents. It has been completed and implemented now and I no longer have to worry about it. Those of us with Alzheimer’s are better off looking at what we have left… not obsessing about that we have lost.

 

Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Jan 132014
 

In this first blog of 2014, I would like to review some of the highlights from the world of Alzheimer’s disease research in 2013, as well as the new directions that we will likely be heading in 2014.Driving on an empty road towards the setting sun 2014

Advances in Brain Imaging 

Advances in brain imaging, specifically amyloid PET scans, have led the way towards earlier identification of Alzheimer’s. Their widespread use in larger studies has made it possible to visualize the presence of beta-amyloid deposition in individuals with no symptoms.

The year began with the publication of additional data showing that amyloid deposition in the brain leads to atrophy, or shrinkage, of specific brain areas, even before patients develop memory loss. Research groups in France, Australia and the United States reported longitudinal studies of amyloid deposition in the brain, demonstrating that its presence predicts subsequent brain atrophy and cognitive decline.

Additional developments in brain imaging were made with results of Avid’s Tau tracers, both of which allow for visualization of the abnormal Tau protein that contributes to the formation of the neurofibrillary tangles of Alzheimer’s. Tau PET scans will undoubtedly become a critical tool in Alzheimer’s research during the next few years, much like amyloid imaging has been so important since the first papers were published on its use nine years ago.

Understanding Alzheimer’s in People with Down Syndrome

In the spring of 2013, the National Institutes of Health held a meeting focusing on Alzheimer’s disease among people with Down syndrome, bringing researchers together to discuss ways to develop a consortium with an aim to understand Alzheimer’s in this highly susceptible population.

- Every person with Down syndrome (DS) will develop AD pathology by age 40

- Half of the Down Syndrome population develops dementia by age 60

The Down Syndrome Biomarker Initiative (DSBI) pilot study was launched this year as a feasibility study of a planned large-scale study to discover indicators of Alzheimer’s disease in Down syndrome, with the ultimate goal of better understanding brain aging and Alzheimer’s in adults with Down syndrome.

Economic Impact of Dementia

A major publication in the New England Journal of Medicine by the RAND Corporation estimated the economic cost of dementia to the United States was approximately $203 billion in 2010. This paper garnered major attention, as it was a well conducted analysis of the economic impact of dementia. The sheer dollar amount is greater than the cost of any other disease faced by our society and is expected to rapidly increase in the next decade.

Trials and Tribulations

2013 was also the year when the long awaited results of the phase III IGIV study were presented, which were unfortunately, negative. Additionally, researchers studying the drug Bexarotene were able to replicate some, but not all of the previously reported effects of this drug on memory and beta-amyloid in mouse models of Alzheimer’s disease. Nonetheless, a placebo controlled clinical trial of Bexarotene was launched this year for the treatment of Alzheimer’s. Results are expected mid-year in 2014.

Prevention and Early Intervention

Perhaps one of the biggest events in the Alzheimer’s research world this year was the launch of the first clinical trial to prevent Alzheimer’s dementia in the general population. The trial, Anti-Amyloid in Asymptomatic Alzheimer’s Disease, or A4, is a three-year study looking at the effectiveness of a drug given to subjects who have absolutely no outward symptoms of memory loss but have positive amyloid scans of the brain. Much will be learned when this study is completed about how soon intervention can be offered in efforts to prevent Alzheimer’s disease.

G8 on Dementia

And finally, global focus on dementia was raised at this year’s G8 summit. All G8 nations made commitments to develop an international action plan for research, share information and data across the G8 countries and to provide unprecedented collaboration. The G8 plan includes open access to all publically-funded dementia research, the introduction of a new global envoy for dementia innovation, and the ambitious aim to “find a cure or disease-altering therapy by 2025.” This plan parallels the U.S. National Alzheimer’s Project Act (NAPA), with a goal of “preventing or effectively treating Alzheimer’s” by 2025.

What Is on the Horizon in 2014?

There are an unprecedented number of clinical trials now running with the aim of preventing Alzheimer’s. As data from recent studies suggest, it may only be through early intervention, before the symptomatic stage, that we can truly affect the course of AD and even consider preventing its dementia stage.

We anticipate more discoveries this upcoming year with Tau imaging, as well as the use of biomarkers in asymptomatic individuals. New data is also expected from large-scale whole-genome studies, which are revealing other Alzheimer’s susceptibility genes. We also look forward to data from some of the new mouse models created with these newly discovered mutations to understand how they contribute to the development of Alzheimer’s, and perhaps represent treatment targets.

We look forward to keeping you updated on the world of Alzheimer’s research in the upcoming year and are optimistic that there will be great developments in 2014.  Stay tuned.

Michael S. Rafii, M.D., Ph.D.

Director, Memory Disorders Clinic
Associate Medical Core Director, Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

 

Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Nov 252013
 

When it comes to caring fwoman sleeps on the sofaor a parent, spouse or other loved one, sleep is not for beauty. It is essential to maintain health and the energy needed to be a caregiver. Uninterrupted, restorative sleep (7 to 9 hours) is recommended by most experts.

But for many of the nation’s 65 million family caregivers, sleep is an elusive luxury.  In fact, a National Alliance for Caregiving (NAC) study on caregiver health risks found 87 percent of those caregivers surveyed suffered from insomnia.

If you suffer from insomnia or sleep deprivation, you are at risk for numerous health issues. According to the National Sleep Foundation (NSF), more than 50 percent of people older than age 65 suffer sleep disorders that ultimately shorten their lives. This deprivation of sleep is called sleep debt. In an interview with WebMD, Susan Zafarlotfi, Ph.D., clinical director of the Institute for Sleep and Wake Disorders at Hackensack University Medical Center in New Jersey, said, “Sleep debt is like credit card debt. If you keep accumulating credit card debt, you will pay high interest rates or your account will be shut down until you pay it all off. If you accumulate too much sleep debt, your body will crash.”

Insomnia typically is a function of not being able to relax our minds and our bodies. To get some sleep, try these tips from Dr. Lawrence J. Epstein, associate physician, Division of Sleep Medicine at Harvard University:

1. Create a sleep-inducing environment: a dark, quiet, comfortable and cool room.

2. Do not use your bedroom for anything other than sleep or sex. No television, no laptops.

3. Make sure you do not eat at least two to three hours before bedtime, and avoid caffeine or alcohol close to bedtime. Note that smoking can cause trouble sleeping.

4. If you are tossing and turning at night and you cannot get those eyes closed, try drinking green or chamomile tea before bed or put a lavender pillow near your head to aid relaxation.

5. Create consistent sleep and wake schedules, even on weekends. Our bodies have internal clocks called circadian rhythms that synchronize our active and rest states with biochemical reactions in our bodies. Circadian rhythms are based on light/dark cycles, with light having the most impact on our ability to get to and stay in restorative sleep.

For caregivers, it is time to awaken to the fact that sleep may be your best medicine.  Sleep well.

Excerpted from A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care by Sherri Snelling (Balboa Press).

 

About the Author 

Sherri Snelling, CEO and founder of the Caregiving Club and author of “A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care,” is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving.

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Nov 142013
 

lehmann

Next month, Mary Margaret and I will have been together 50 years.

She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way.

In 2009, I was diagnosed with Alzheimer’s.

After I received the diagnosis our lives changed. At the time, Mary Margaret and I were living in California, but this news caused a great sense of stress, so we relocated to Minnesota to be closer to family. Moving wasn’t difficult – it actually took a weight off our shoulders. Then one of my wife’s friends said “Why don’t you call the Alzheimer’s Association’s 24-hour helpline?” That really changed our lives. Not only have I become very involved in the Association, but so has Mary. During our career years, we really did very little together – now we do everything together. Our connection to the Alzheimer’s Association and shared commitment to raising awareness of the disease has brought us closer together as a couple.

Before I received the diagnosis, Mary and I were absorbed in our separate professional lives: She had her activities, and I had mine. If we got together on a Sunday, it was a big deal. It’s almost like we are dating all over again. She has turned me on to subjects I wouldn’t normally be interested in, and we have immersed ourselves in an eclectic series of programs. She is an avid reader and I’m not; however, through themed book presentations I have been able to learn something new with Mary, and that was a different experience for me. In turn, I have turned Mary on to the arts and now we are both passionate about visiting museums. There isn’t a local museum we haven’t been to!

We support each other.  The experience for caregivers and care partners is unique to the relationship. Mary and I support each other on a daily basis; we have to. She is the social contact, the “hostess with the mostess”, and I am her assistant, you might say, helping in the ways I can. I’m not a terribly patient person, so I am trying to be more patient, which is the least I can do.

The biggest thing that I notice is her relationship with other caregivers. I have a deep respect for the sacrifices that caregivers make every day to support individuals like me who are living with the disease. Today, there are more than 15 million unpaid caregivers of people with Alzheimer’s and other dementias in the United States. The role is demanding; they are our lifeblood.

Mary Margaret’s compassion extends beyond our relationship. She spends much of her free time talking with other caregivers; learning from others and offering support. She has hundreds of followers from all over the U.S. on Twitter, and she will refer articles to them to get feedback and exchange ideas. Compassion is in her genes! During National Caregiver Month, I want Mary Margaret and other caregivers to know that I am grateful. THANK YOU!

What makes a caregiver in your life special? Leave a comment here on the blog, or leave a tribute for a caregiver or care partner at the Caregiver Center.

About the blog authorKen Lehmann is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG), and he pays tribute to his wife and very special care partner Mary Margaret during National Alzheimer’s Disease Awareness Month. As an Advisor, Ken encourages others living with the disease to avoid worrying about the past, but to “live in the moment.” 

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Oct 232013
 

flu vaccine and Alzheimer's‘Tis the season for flu vaccine! Every year we get calls from people asking if there is a link between the flu vaccine and Alzheimer’s disease. This is an idea that came about more than a decade ago and has been debunked many times over.

Fact:  Several mainstream studies link flu shots and other vaccinations to a reduced risk of Alzheimer’s disease and overall better health! For example:

   A  2001 Canadian Medical Journal report suggests older adults who were vaccinated against diphtheria or tetanus, polio, and influenza seemed to have a lower risk of developing Alzheimer’s disease than those not receiving these vaccinations.

The bottom line is that you should speak to your doctor about whether or not you should get a flu vaccine this year and don’t let fears of Alzheimer’s risk stop you!

About the  author: Elizabeth Edgerly, Ph.D., is the chief program officer for the Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Dr. Edgerly, click here.

This post originally appeared on www.alzheimersblog.org.

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Sep 242013
 
single flower walk

The first change I noticed in my dad was his inability to write out checks.  I stopped by his office one day, and he was sitting at his desk with the checkbook open.  Several balled-up checks were scattered on his desk. He was slow to speak, but finally admitted that he could not write out the check correctly. On one check, he had transposed the numbers for the amount to be paid.  On another check, he had attempted to write his name on the “payee” line, but the scrawl did not look like his signature.  He was so frustrated, confused and scared. This was so unlike him—a man who had always been so confident, organized and in control. This was just the beginning of many changes in his personality and behavior.

My dad had Alzheimer’s, a progressive disease that robs the mind. It also breaks the hearts of family members who helplessly watch as their loved one slips away.

Fred Is Not ForgottenAs time went on, my dad, who had always been an impeccable dresser, no longer seemed to care about his appearance. He would mix prints with plaids, and chose to wear the same red sweater every day, even though he had a closet full of clothes. Eventually, he had to go into a 24-hour nursing facility, as he would wander at all times of night and became combative.

It was devastating for family and friends when we realized that he had slipped into his own little, confused world and did not recognize any of us. At times he mistook me for his sister or his wife.  Later, he ignored everyone but my brother, and their discussions were limited to talking about the family business. Eventually, all of his visitors were greeted by a blank stare.  As his journey came to an end, his muscles became rigid.  He could no longer sit up or walk.  He died in a fetal position, three years after the initial diagnosis.

His bout with the disease was relatively short in comparison to that of many victims, but his condition, decline and death have had a lasting effect on me. Twenty-five years later, every time I forget a word needed to complete a sentence or forget where I put something, I fear I may have the same fate.  Since his death, more attention has been given to Alzheimer’s; however, more attention is needed. It is now the sixth leading cause of death and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed.

On October 13, 2013, I will Walk to End Alzheimer’s at Tower City Center in Cleveland, Ohio.

I will walk in memory of my dad, Fred Grair, Sr., and other family members who have been affected by Alzheimer’s.

walk to end crowd

I will walk to allay my fear of contracting the disease.

I will walk on behalf of the more than 5 million Americans who are living with Alzheimer’s.

I will walk to raise money for Alzheimer’s awareness, support, care and research.

I will walk for you.

Today, more than half of all Americans know someone with Alzheimer’s.  If you have not been impacted in some one by this terrible disease, consider yourself fortunate.  Soon, no one will be untouched.  Please walk with me to end Alzheimer’s.

About the blog author:  Stephanie Grair Ashford is steering committee member and team captain for the 2013 Walk to End Alzheimer’s in Downtown Cleveland, Ohio.  You can donate to her team, Fred’s Not Forgotten.

This column originally appeared in the Sun News.

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