Jun 092017
 

For a while now, I’ve been worried about memory lapses. About big vacant holes where my memories should live.

For example, I completely forgot that one of my best friends growing up also worked for me at the school newspaper at Penn State. I all too often looked at my sister with blank stares when she described her memories of our family life; I just don’t remember the stories.

But I didn’t rush off for testing because I didn’t think anything could be done about my memory. And besides, I’m only in my mid-50s and that is awfully young for Alzheimer’s or dementia, isn’t it?

About a year ago, my sister saw a research study notice for a drug that has shown some success in slowing down the progression of memory loss. I took the online test and “passed” on to a telephone conversation. I “passed” that, too, and soon found myself in a medical research office in suburban New Jersey – giving lots of blood, having an EKG and being poked and prodded by a neurologist.

The key test was the RBANS (Repeatable Battery for Neuropsychological Status), a series of mini-memory and cognitive tasks. I needed to score an 85 or less to get into the trial; the research coordinator told me that, based on our conversation, she really didn’t expect me to “pass.”

She then came back with the news that I scored a 71, much lower than the number needed to qualify for the trial. Soon I was meeting with the director of research and hearing the news that more testing was needed, but that it was very likely that something serious was wrong. A subsequent PET scan confirmed it: I do indeed have younger-onset Alzheimer’s.

Am I terrified? Absolutely. More than a bit numb? Yep. Determined to do what I can for myself and for others? Even more so.

I’m told that my level of memory loss and cognitive impairment is considered mild to moderate. I’m proudly participating in a clinical trial for a drug which has shown promise in slowing the progression of the disease, particularly in folks in the early stages of Alzheimer’s.

In addition to participating in the clinical trial, I’m also joining others in the Alzheimer’s community to chronicle this disease and my fight against it. My first article appeared in today’s edition of The New York Times, and I’m hopeful that the paper will periodically publish more pieces about my experiences and my fight.

Most importantly, I’m reaching out to others with the hope that it will help me overcome the overwhelming wave of fear that sometimes hits me. For example, I was just chosen to serve on the Alzheimer’s Association National Early Stage Advisory Group, a group composed of people in the early stages of Alzheimer’s disease who help raise awareness and advocate for others living with dementia.

I want to learn as much as possible so I can become an effective advocate. Yes, I have a story to tell, but these days – to be as effective as possible – we need to share the facts and find ways to reach as many people as we can.

I’m going to fight, just like I fought for our civil liberties and the environment throughout my career. Just like I’ve fought diabetes and the clinical depression that I’ve lived with for most of my life.

At the end of the day, I hope to be the same guy I’ve been for quite some time. Perhaps I’m a bit more forgetful about some things – remembering names, handling simple math and figuring out directions are increasingly difficult – but I’m already more willing to slow down and appreciate the world around me. And that’s not such a bad thing.

About the Author: After graduating from Penn State University, Phil Gutis started at The New York Times as a copy boy and earned promotion through the clerical ranks until he was selected as a reporter trainee and then full-time reporter. After journalism, Phil transitioned into advocacy and for several decades established and managed multi-million dollar communications programs for large advocacy organizations including the Natural Resources Defense Council and the American Civil Liberties Union. Phil currently manages the Prallsville Mills, an early industrial village along the Delaware River in Stockton, NJ.

 

 

Jun 022017
 

My husband, country music star Glen Campbell, was diagnosed with Alzheimer’s in 2011. In 2014, the documentary film “Glen Campbell: I’ll Be Me” shared Glen’s 151-concert “Goodbye Tour” with millions of people. It was empowering to share our family’s story with the world, but it was just the beginning of our continuing journey with this devastating disease.

Throughout his life, Glen demonstrated how the power of love, laughter, friendship, faith and music helped him overcome many obstacles. I am determined to continue sharing his message with the world through my website, www.CareLiving.org, where others can find hope, humor and direction from my own experiences as well as through guest articles and posts from doctors, specialists, friends and fellow caregivers.

Don’t Become The Second Victim

Beyond the inherent depression of caregiving, it can also be financially and emotionally devastating for many families. Husbands, wives and children often become the second victim of the disease. Although the experience can strain a family in many ways, it can also be a blessing when you change your perspective and search for hope and inspiration amid the sorrow.

Alzheimer’s has opened up a whole world of new friendships and peers for me. I’ve built up a support group of caregivers who have become some of my best friends and who help me get through these tough times with positivity and determination. I’ve also been introduced to doctors and experts whose tireless work and research provide the much-needed optimism that a cure is on the horizon.

The Alzheimer’s Association’s website was the first place I went to for information when Glen was diagnosed. I was at home with nowhere to turn when I opened up my computer and went to Google to search for help and learn more about the disease. Finding www.alz.org was a godsend; I think it’s one of the best web resources out there, and I am so happy to have found it.

Music City Cares

Our participation within the Nashville music community, as well as with the Alzheimer’s community, has created a perfect pairing leading up to the Disco Party. Thanks to Brad Paisley and Kimberly Williams-Paisley, this event will be a wonderful opportunity to raise awareness of both Alzheimer’s and the plight of caregivers. Brad appeared in “I’ll Be Me,” and I was deeply inspired by Kimberly Williams-Paisley’s book about her mother who died of Alzheimer’s. They both care so much about this cause, and we all want to support the efforts of the Alzheimer’s Association.

If you’ve been affected by Alzheimer’s, help us “turn the beat around” at Nashville’s Wildhorse Saloon on Sunday, June 4 to help raise funds for the Alzheimer’s Association and to see what happens when disco meets country!

 

About the Author: Kim Campbell has been married to country/pop star Glen Campbell for 35 years. As a devoted mother, wife and caregiver, Kim has made it her mission to improve the quality of life for people with dementia and their families. In 2016, she launched www.CareLiving.org, a website to provide information, inspiration and hope to caregivers.

 

 

May 312017
 

Known for her role as Annie Banks in the 1991 Steve Martin film “Father of the Bride” (with enviable, perfect hair), the television series “Nashville” and wife of country music superstar Brad Paisley, Kimberly Williams-Paisley is the author of “Where the Light Gets In: Losing My Mother Only to Find Her Again,” which chronicles her mother Linda’s battle with Alzheimer’s. Linda passed away in November of last year.

Now available in paperback, Kimberly’s book shines a light on the stigma of dementia and the unbreakable bond shared between mothers and daughters. We spoke to Kimberly about the book and her next project – a disco fundraiser benefiting the Alzheimer’s Association.

Congratulations on your book going into paperback, Kimberly. Why did you decide to share your story? What made you want to be open and honest about dementia with the public?

In 2006, my family learned that my mom, then 62, had primary progressive aphasia, a rare form of dementia (which we later found out was Alzheimer’s disease). This book follows the journey we took – the mistakes, the good times, and the bad – and lays it out for people to see.

One of the biggest mistakes we made when Mom was diagnosed is that we listened to her request for secrecy. As Mom became less aware and her dementia progressed, I felt a strong need to tell my story. I also wanted to encourage others in similar situations to tell theirs.

The book was born out of a magazine piece I wrote for Redbook magazine, and the response to our story was astonishing. It was also very therapeutic for me to share it. I knew I wanted to dive deeper into the journey. Writing helped me understand what happened.

Can you also speak to the significance of the book’s title?

The title came from a lyric from the Leonard Cohen song “Anthem,” and it became my anthem while I was writing the book:

“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything

That’s how the light gets in”

I wrote it down and pasted it on my mirror. One morning I woke up and saw it there, and I realized how rich my journey with my mother had been – so many blessings, so many challenges. Above all, I wanted the title of the book to focus on the silver lining, the hope.  “Where the Light Gets In” popped into my head, and I thought, “Perfect.”

Do you consider the book a form of advocacy?

Definitely. I wanted to tell our personal story because it helps people understand what the disease truly is – complex, sad, heartbreaking – but also I wanted to highlight what lessons can be learned when you go on a journey you haven’t chosen to take.

I hope people will fall in love with my mom the way I loved her. My mother was not her disease. She was an exuberant, passionate, empathetic, funny woman who just happened to have this thing happen to her that we couldn’t fix. I wanted to share her light, her heart and her passion for her family with the world. I hope the book helps people understand that it’s okay to be vulnerable, open and honest about what happens when someone you love has dementia.

I am so glad the Alzheimer’s Association exists. This disease has many facets to it, and families are faced with an array of complicated challenges. We didn’t get much help in the beginning because my mom didn’t want us to, but I wish we had. Alz.org has a wealth of information about Alzheimer’s and other dementias. The Association’s free 24-hour caregiver helpline connects people to local resources wherever they are. Once we started reaching out, I felt like I’d gained a whole new extended family.

What do you think of the stigma surrounding a dementia diagnosis?

My mother didn’t want people to think she wasn’t smart, or to pity her because of her diagnosis. (Linda had worked as a foreign correspondent and became a major gifts fundraiser for the Michael J. Fox Foundation for Parkinson’s Research.) To be honest, she was embarrassed. I think that is common for people who are starting to lose some brain function, realizing they aren’t as “sharp” as they once were. I imagine it’s terrifying, and I know it’s common for people to want to try to hide the truth.

What have you learned from your husband and children in coping with dementia?

My kids taught me about accepting my mom as a new person, because they were able to do that so
effortlessly. I think kids can often live moment to moment similarly to the way someone with dementia can.

I have a great deal of gratitude for my husband, because not only did he welcome my challenging family with open arms, he also helped out financially. Dementia is an expensive disease, often requiring 24/7 attention. Mom wouldn’t have gotten the care she got if it weren’t for Brad’s assistance.

On June 4th, you will be co-hosting a Disco Party with radio host Blair Garner in Nashville benefiting the Alzheimer’s Association. Your husband Brad Paisley and other top musical artists will perform disco hits from the 1970s and 1980s. What can you tell us about the event?

We wanted it to be a lot of fun, reviving an annual disco party Blair used to throw years ago. My mom and I often connected through music, and I know that a lot of people with dementia have a similar experience, so it is fitting that we are having this type of event. I hope we bring fresh awareness to the cause in a city that has made music its centerpiece.

Learn More:

May 162017
 

The Longest Day is all about love! On the summer solstice, people select any activity they love — or an activity loved by those affected by Alzheimer’s disease — to help raise funds and awareness to help end Alzheimer’s.

Two sisters from Decorah, Iowa are fighting to end Alzheimer’s  on behalf of their father Dale, who was diagnosed with early-onset Alzheimer’s at age 57. Most of Brecka and Shanna’s The Longest Day teammates are honoring or remembering someone special to them, as all of them have been affected by Alzheimer’s disease in one way or another. Although the sisters know that there won’t be a cure in their dad’s lifetime, they are fighting to make sure that there is a cure in theirs!

Joining the fight

“Dad is an avid cyclist and I have always enjoyed riding with him and his friends. The Longest Day allows us to do something he loves while honoring him and raising funds to take down Alzheimer’s – what could be better?!” says Shanna.

“We don’t do anything less than 100%, so we loved the freedom to go as big as our dreams by picking a meaningful activity and a time that works with our schedules,” Brecka says on The Longest Day event’s flexibility.


Preparing for the day-of

The sisters had an easy time choosing the activity of cycling. “Dad once completed a triple century (300 miles!) in a single day. He also was one of the leaders in a fundraising project aiming to extend a local bike trail,” says Brecka beams. “It only seems fitting to start the event on the piece of the trail he helped to make possible. We’re also encouraging out-of-towners to ride in their own cities; people who don’t bike can get involved by walking or jogging!”

Shanna knows that planning is key to their event’s success. “We have been reaching out to everyone we know to join in the fight.  We have gotten a lot of community and business support and hope to do other mini-fundraisers to help us reach our fundraising goal.

“The day-of is going to be EPIC.  We are planning an hour for both kids and teens and businesses are taking an hour to honor and remember those impacted by Alzheimer’s. We also have a pretty fantastic after party planned. It will cap off 24 hours of kicking Alzheimer’s in the butt!”


Their longest days

Despite all of their excitement about the day itself, it has been a rough road for both sisters and their family. Brecka experienced her longest moments in the space between when she found out her dad had Alzheimer’s and in supporting him as he told her other sisters of his diagnosis. “Not being able to “fix it” was a terrible feeling,” she says.

For Shanna, there have been so many heart-wrenching moments. “The hardest part is seeing my dad decline, because he knows that he is declining.  My little sister is still in high school and could lose Dad before she graduates – that is one of the worst parts. And finally, knowing that my kids, ages 3 yearsand 3months, have very limited time with their grandpa…it just breaks my heart.”

Both sisters agree – being able to take control of their activity and plans for The Longest Day is empowering and helps them feel like part of the fight to end Alzheimer’s. It is a way for them to leave their mark and honor their father and his legacy. “Finding a cure has to become everyone’s business, or it’s going to become everyone’s big problem really soon,” says Brecka.

In it together

The sisters aren’t slowing down, because they know that no one can fight this disease alone. “As the population ages, and advances in medicine help people live longer, a greater percentage of people will have Alzheimer’s or other dementias. Our country doesn’t have the infrastructure or resources to care for the number of people who will have dementia – but otherwise be reasonably healthy – in the years to come. We won’t be able to cover the costs: physically, financially or emotionally. We have to find a cure,” says Brecka.

Shanna admits that she learned about Alzheimer’s the hard way: by seeing her dad’s fight. “I am embarrassed to admit I had a lot of misconceptions about Alzheimer’s before Dad was diagnosed.  I didn’t realize how young it can hit, and how great of an impact it has on the person diagnosed, not to mention friends and family.  It is a heartbreaking disease, and sadly it is one that will impact us all.”

Making sour moments sweeter

Shanna and Brecka’s team has raised $4,517 to date, but their goal is $24,000 – $1,000 for each hour in the day. “We started by creating a presence on social media and have been regularly sharing a lot of video content,” says Brecka.

“We’re in the early phases of getting support from local businesses and schools and have several businesses lined up to hold their own fundraisers for the event. We’re well on our way!” adds Shanna.

“There is a quote from one of my favorite television shows, “This is Us,” that has inspired me along our fundraising journey,” says Shanna. “A character said: ‘There’s no lemon so sour that you can’t make something resembling lemonade.’

“Our dad’s diagnosis was one of life’s most sour lemons. Finding a cure…now that’s our lemonade.”

About Shanna and Brecka: The sisters joined The Longest Day as team Trails for Dale to celebrate and honor their dad, Dale Putnam, who was diagnosed with early-onset Alzheimer’s disease. Although there is no cure for him, or anyone fighting Alzheimer’s today, he’s an active participant in Alzheimer’s clinical trials in hopes that one day there will be a cure for someone else. Shanna and Brecka want to help make his dream a reality.  Visit their team page here.

 

 

May 112017
 

Winning a gold medal last August in the 2016 Olympics is a moment I will never forget. I wanted to go home that night. All I could think was: “I need to get back to Arkansas. I need to fly home to see my mom.” Of course there were two more weeks to spend in Rio after my event – and the closing ceremonies to attend – but all I could think about was being at home with Mom. Everything I’ve done has been for her.

My mom was diagnosed with Alzheimer’s 11 years ago, when I was 17 years old. I’m the youngest of six kids, and she always did everything for the entire family, as so many mothers do. She cooked and cleaned and was always ironing and folding my shirts for me. She showed her love through all of those everyday things she did for all of us. My father – who is now her caregiver – was working long hours, so she was the one raising me every day.

I remember the signs.

I remember her cooking meals and then forgetting to finish preparing them. Sometimes she would leave dinner behind to burn or be recooked later. I remember her staying out late and getting lost. There were so many little things that started to become bigger issues.

It was hard watching this happen, because Mom was always there for me. She took me to my football practices and supported me at all my track and field meets. She would scream so loud at my meets that I could hear her over everyone; there was never a time I didn’t hear her. She would do anything for anyone – that was just the type of person she was.

I remember one day in high school when I came home and I saw how badly Mom’s hands were shaking. It was just weeks after she was diagnosed with Alzheimer’s, and I could already see how sick she was getting. For the first couple of years after her diagnosis, it was rough for me, not really having anyone to talk to about the situation. It was hard just to focus at school.

Luckily, my brother was there. I don’t know what I would’ve done without him.  He told me that Mom had told him everything she wanted us to do. He said: “Jeff, she told me to tell you that you have to finish school.” I remember crying for almost an hour. My eyes were bloodshot, all red. Didn’t they know how hard it was for me to comprehend all of this? I didn’t know where to turn, or who to talk to.

I rarely tell anyone what’s going on in my life; I am naturally quiet and tend to keep things to myself. But I do know that awareness needs to be brought to Alzheimer’s disease, so I will continue to raise awareness of this disease by sharing my family’s story. I want people to tell me their own stories. I want to keep the lines of communication open. When we talk about how we are facing this disease, it helps us feel less alone.

My mindset during the Olympics in Rio was that no one was going to beat me. In my head, it was all for my mom. “I will not lose. I will win gold for her. I can control this moment, and make it mine.” I focused and worked hard, worrying about no one but myself in the moment of competition. It took a whole lot to get to that point, but I did. And I won.

I feel like I am winning every day. I take after my mother, I hope. I am a nice person who cares about everyone. I will talk to someone living on the streets, offer money or help, and give my blessings – that’s how I cope with my situation. I continue to help others as my mom would.

I’m the first man from the U.S. to win gold in the long jump since 2004 and I’m looking forward to pushing myself even further, focusing on sprinting before the next summer Olympics in Tokyo in 2020. I know I can do it. To the naysayers, I say: “Just watch me. I will do it.”

My mom continues to inspire me. Every day, she still fights through the disease, with my dad by her side. I am so happy she is alive, and that I could bring the gold back to her and place it in her hands. That is all that matters. Mom taught me to keep on fighting, and that is what I encourage other people dealing with this disease to do, whether you’re the child, spouse or friend of a person with dementia or Alzheimer’s. Talk to each other, support each other and stay grounded. You aren’t alone.

About the Author:  Raised in McAlmont, Arkansas, Jeff Henderson is an American track and field athlete. Jeff took first place with an 8.38 meter leap in the long jump at the 2016 Summer Olympics, bringing home a gold medal to his mother. Jeff encourages anyone in the midst of an Alzheimer’s diagnosis to find someone to talk to. Follow him on social media via Facebook and Twitter.

May 032017
 

The Alzheimer’s Impact Movement, the Alzheimer’s Association and our nationwide network of dedicated advocates are celebrating breaking news from Washington – federal research funding for Alzheimer’s at the National Institutes of Health (NIH) has received a $400 million increase in the FY2017 budget.

We first shared with you the Senate Appropriations and House Appropriations Committee’s intent to once again pass an historic funding increase in the summer and today it was officially signed into law by the president. Today’s news would not be possible without the work of AIM, the Alzheimer’s Association and our advocates. Since last year, we have held thousands of meetings with members and their staff requesting they invest at least an additional $400 million in Alzheimer’s research funding.

Thanks to bipartisan leadership in Congress, today Alzheimer’s research has reached nearly $1.4 billion at the NIH. This bipartisan effort was spearheaded by Senate Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Roy Blunt (R-Mo.) and Ranking Member Patty Murray (D-Wash.), and by House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Tom Cole (R-Okla.), and House Appropriations Committee Ranking Member Nita Lowey (D-N.Y.).

This marks the second consecutive year that Alzheimer’s research funding has been singled out for historic funding increases. Still, more work remains.

Today, Alzheimer’s costs the nation, $259 billion in 2017, with $175 billion coming in direct costs to Medicare and Medicaid. The Alzheimer’s Association estimates that by mid-century the cost of Alzheimer’s is projected to more than quadruple to $1.1 trillion. Yet, despite today’s funding increase, Alzheimer’s research funding at the NIH is still well below what is needed if researchers are to meet the primary goal of the national plan to find a method of treatment or prevention by 2025.

Demonstrating the urgency of this crisis, the NIH Professional Judgment Budget commissioned by Congress has already recommended a $414 million increase in spending on Alzheimer’s disease research for fiscal year 2018. The Alzheimer’s Association and AIM are already working to ensure that today’s increase is not the last. Just last month, a record-breaking 1,300 advocates from across the country came to Washington, D.C. for the Advocacy Forum and asked Congress to continue to act.

Please join us in thanking Congress for taking decisive action today and urge them to remain our partners in the fight to end Alzheimer’s.

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

May 012017
 

This Wednesday, May 3, a tribute concert will be performed at Carnegie Hall in honor of Grammy-winning songwriter, composer and singer Jimmy Webb. Art Garfunkel, Ashley Campbell, Toby Keith, Catherine Zeta-Jones, Marilyn McCoo and Dwight Yoakam are among the artists joining Jimmy onstage to benefit the Alzheimer’s Association and the I’ll Be Me Fund in honor of Jimmy’s friend of 50 years, Glen Campbell. We spoke to Jimmy about the event, his experience watching Glen’s battle with Alzheimer’s and thoughts on the importance of music in every person’s life.

Congratulations on the tribute, Jimmy! Can you tell us what music you’ll be performing or what songs may be featured?

I’m into this event up to my neck and I am happy as I can be! I can’t reveal too much, but I can tell you that the artist or artists most associated with each of my songs will be performing them – and there will be some surprises, too.

I’ll be performing some duets, including “If These Walls Could Speak” with Graham Nash, and I will be playing piano with Art Garfunkel on “All I Do”, which was his No.1 record. Amy Grant, who I absolutely adore, will be joining me on “Adios.”  There is a lot to look forward to.

Proceeds from this tribute will benefit the Alzheimer’s Association. How do you think this event will help raise concern and awareness of Alzheimer’s disease?

I am so proud that the Alzheimer’s Association and the I’ll Be Me Alzheimer’s Fund will be the benefactors of this event.  I never have a moment’s hesitation in giving my personal testimony about what I have witnessed through Glen Campbell’s life and his family’s life since his diagnosis of Alzheimer’s. I never really understood the disease until Glen’s diagnosis; now I hardly think about anything else.

Carnegie Hall is a great touchstone – an American monument, really – and to hold this event there is especially significant, showing that the music community is really active and truly cares about changing the course and effects of this disease. There will be a huge diversity of artists onstage – it won’t be “just country” or “just pop.” We’ve tried to embrace all kinds of people with this event in presenting the event to the public and making it possible for people of more modest means to attend. We want everyone to raise funds and enjoy this event.

Congratulations on your new memoir The Cake and the Rain.” As a member of the Songwriters Hall of Fame, the Nashville Songwriters Hall of Fame and as a Grammy winner, what mark do you think you’ve left on the music scene?

I believe in traditional songwriting – a good core structure, a beautiful melody and lyrics that are accessible to people. I want my music to reach into their hearts and communicate emotions that they perhaps don’t find easy to express, and I hope that it can be a go-between for them to say what they really want to say to the people they love. I can only hope that it helps them when they can’t find the right words or the weight of what they want to communicate.

Music has always been a benign companion of human beings – it’s Cupid. It helps us remember things we didn’t want to forget – we get married to music, we live our lives to music. I am proud that I have created some music in my life and to have left something behind that helps people express themselves in a world where it is sometimes so hard to communicate what we truly want to say.

Why is it personally important for you to raise funds and awareness of Alzheimer’s disease and the people it affects?

I do it for Glen and his family. I think Glen Campbell is the poster child for facing Alzheimer’s with courage. He fought against the disease and said “I’m not done yet!” – and that is a direct quote! Glen has always been an incredibly optimistic man and a fighter in life – funny and positive about most things. It wasn’t a surprise to see him react and fight back against the disease the way he has.

Audiences who came out across the country to see him play his farewell tour came out in droves. I believe his experience became a consciousness-raising moment in history. Even though he was a celebrity, he allowed the public a very personal look into his life through the movie “Glen Campbell: I’ll Be Me”, documenting his fight and his decline and showing people what he and his family were experiencing.

Glen’s family helped demystify Alzheimer’s disease – they took their fear and dissipated it. The family looked at the disease as something they knew they had to face and asked themselves: “What can we do to help? What would we want done for us if we were in that situation?” They were brave and truly inspirational in how they approached the disease in a practical way.

As much as Glen and his family fought back, I personally feel a huge sense of loss. Alzheimer’s has inflicted a tragic loss of talent and energy and potential. The disease hit Glen at a point when he knew more than he would ever know and when he still had so much to contribute within the music community.  Alzheimer’s snuck in the back door and took the records Glen would’ve made and all he still had to share with his family, friends and his audiences. To me, that was a personal tragedy that is still very difficult for me to deal with.

My difficulty, however, in no way compares to the distress and just plain stress –that Alzheimer’s inflicts on the caregivers. Alzheimer’s is full of sorrow and exhaustion, and it has a ripple effect. The person with Alzheimer’s is surrounded by rings of people affected in different ways; sometimes they don’t even know they are being affected! Watching the disease progress in Glen made me put myself in his wife Kim’s shoes. For years now, my own wife Laura and I have asked ourselves and one another the heavy questions. “What would we do in similar circumstances? How would I take care of you? How would you take care of me?” When you are affected on a very close, personal basis, you view life in a different way. And your eyes are wide open.

You’ve long been an inspiration to other songwriters and musicians, and you were a collaborator with Glen on some of his biggest hits, such as “Wichita Lineman.” His recently-announced final album “Adios” will include 12 tracks, featuring songs like “Just like Always.” What has your collaboration over the years meant to you? What emotions do you have in knowing that this will be his last album?

I don’t compare my own loss with that of Glen’s family; it doesn’t compare on any level.  But I do feel like a second-tier casualty of Alzheimer’s disease. It has taken the most accomplished, beautiful, golden voice that was perfectly matched to my songs. It has taken the No. 1 promoter of my music, who also happens to be my best friend of 50 years. Our children grew up together, and it wouldn’t be much of a reach to say that the Campbells and the Webbs are like family.

I can’t put into words the loss I feel over Glen’s journey with this disease. But I can say this: the world needs beauty. The world needs its painters, its singers and its artists. There is something so ugly about this particular man being taken from us in this fashion. It is hard for me to deal with and sometimes I just don’t. Sometimes I am like an oyster covering the sources of my irritation in pearlescent mother-of-pearl; but trying so hard not to think about it is almost like thinking about it.

Once you are touched by Alzheimer’s, your life will never be the same. It seems like a waste of so much energy and talent…and so much LOVE. It’s hard to find any good thing about it, but you try.

Glen found a way to be a living, breathing, fighting example of Alzheimer’s for millions of people. In publicly fighting back, he turned the bad into something good. I can only try to walk in his footprints. He has been so dear to me and my family, and whether you knew it or not, he was probably dear to you, too. He was going to make so much more music that you would’ve loved.

If we work hard enough and raise enough money, we can turn this thing around.  We can end this disease for good. For love, for music – and for those we consider family.

About Jimmy Webb:  Jimmy is a songwriter, composer and singer known worldwide as a master of his trade. Since his first platinum hit “The Worst That Could Happen,” Webb has had numerous hits including “Up, Up and Away,” “By the Time I Get to Phoenix,” “Wichita Lineman,” “Galveston,” “All I Know” and “MacArthur Park,” and has also become a leader and mentor in the industry as a champion for songwriters.  Webb is the only artist ever to have received Grammy Awards for music, lyrics and orchestration. He was also the youngest person ever to be inducted into the Songwriters Hall of Fame and serve as its Chairman. Webb is married to Laura Savini, a producer and host for PBS. He has five sons, one daughter and recently became a grandfather.

Photo Credits: Photo #1: Sandra Gillard/Lightkeepers, Photo #3: Sasa Tkalcan, Photo #4: RockStars and Babies

Learn More:

Apr 122017
 

Perhaps your grandmother had Alzheimer’s disease; maybe your mom or dad is currently living with the disease. You may be concerned that you are seeing signs of the disease in yourself or a loved one. Whatever the situation, if your family has been touched by Alzheimer’s, it is natural to be curious if a genetic test is valuable in predicting the likelihood of developing the disease. Although the cause of Alzheimer’s is still unknown, scientists have identified a number of genes that impact your risk of developing the disease.

On Thursday, April 6, the U.S. Food and Drug Administration (FDA) announced that they have approved at-home genetic testing through the 23andMe Personal Genome Service Genetic Health Risk (GHR) test, which tests for genes associated with risk of 10 diseases or conditions, including late-onset Alzheimer’s. People will be able to send 23andMe a saliva sample and receive their genetic data back through the mail.

We spoke with Keith Fargo, Ph.D., Director of Scientific Programs and Outreach at the Alzheimer’s Association, about what you need to know about this type of testing – and what the results tell (and don’t tell) you.

Two categories of genes influence whether a person develops a disease: risk genes and deterministic genes. Alzheimer’s genes have been found in both categories. Can you explain the difference between these types of genes?

Risk genes increase the likelihood of developing a disease, but do not guarantee it will happen. Deterministic genes directly cause a disease; they guarantee that anyone who inherits one will develop the disorder.

23andMe says their genetic test evaluates more than 500,000 genes and gene variants. Regarding Alzheimer’s, it evaluates whether you have the APOE-e4 Alzheimer’s risk gene. It was the first Alzheimer’s risk gene identified and remains the one with strongest impact. Having one copy of the APOE-e4 gene increases your risk – having two copies increases it more – but it is hard to say exactly how much for any individual.

There are two other variations of APOE, known as e2 and e3. The e3 variation is relatively neutral and the e2 variation may provide some protection against Alzheimer’s dementia. The newly approved test does not evaluate for these variants. Plus, there are nearly 30 other genes that have been identified to also affect risk of late-onset Alzheimer’s, but (a) those genes don’t impact risk as much as APOE-e4, and (b) this test does not evaluate for them.

There are three more genes that have misspelling in their DNA or mutations where, if you have one, it’s a virtual certainty that you will develop Alzheimer’s dementia. These are the deterministic genes. The 23andMe test does not look for these gene mutations, either.

Part of the challenge with understanding the value of the newly approved test is that many people who have APOE-e4 never experience Alzheimer’s dementia symptoms, and many who do develop the disease do not have any copies of APOE-e4.

For this reason, and because of the current lack of proven preventive strategies, the Alzheimer’s Association does not recommend genetic testing for Alzheimer’s disease for the general population. If you are concerned about Alzheimer’s disease or memory changes in yourself or a loved one, the Association encourages you to have a frank conversation about your risk with your healthcare provider.

If someone’s parent or sibling had or has Alzheimer’s, is he or she at a higher risk of developing the disease?

The fact is this: everyone is already at risk. Of people 85 and older, one third of them have Alzheimer’s dementia. And having a family history of Alzheimer’s is not necessary for someone to develop the disease.

That being said, people who have a parent, brother or sister with Alzheimer’s are more likely to develop the disease, and those who have more than one first-degree relative with the disease are at even higher risk. But, again, it is hard to say exactly how much an individual’s risk may be.

If someone is interested in having genetic testing done, what are the first steps he or she should take?

The Alzheimer’s Association suggests that you talk to a genetic counselor before deciding to take the test and, if you decide to get genetic testing for Alzheimer’s, again after you receive the results. The National Society of Genetic Counselors website provides a searchable directory to locate a counselor by location and specialty.

What are the benefits of speaking with a genetic counselor?

A genetic counselor can help you understand what the test does and does not do. He or she can help you work through making a decision that is best for you in terms of ordering the genetic testing kit. Once you get the results back, he or she can help you determine what the results really mean.

Some people think that this is a diagnostic test for Alzheimer’s, but it’s not. It is a test for the presence of one or two copies of the APOE-e4 Alzheimer’s risk gene. It’s not going to answer the question most people have, which is: “Will I get Alzheimer’s disease?” You can have two copies of APOE-e4 and never develop Alzheimer’s disease. Conversely, you can have no copies of the gene and still develop the disease.

Do you believe that taking a genetic test is a proactive step in controlling one’s health?

For some people, yes. It may give them the motivation they need to make lifestyle changes that can reduce their risk of cognitive decline as they age, and possibly even reduce their risk of dementia. In fact, there are behaviors that we should all be doing to keep our brain healthy as we age. As a starting point, the Alzheimer’s Association has research-based brain health tips that we call 10 Ways to Love Your Brain. You can find them at www.alz.org.

That said, at the Alzheimer’s Association, we are concerned that people who receive results that confirm they don’t carry APOE-e4 will assume that means they won’t develop Alzheimer’s. The truth is that these people are still at risk.

With an unsupervised at-home test, there is a real possibility of people misunderstanding their results, which could result in making misinformed decisions about their health. A genetic counselor can be helpful in making informed decisions. If you choose to take a genetic test, discuss it with a genetic counselor before and after so that you are educated about the process, the test and what the results mean. And if you are already experiencing symptoms of cognitive decline, see a healthcare professional for a full evaluation.

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Apr 042017
 

“Mom has been very belligerent this morning,” Daddy told me on the phone. I was on the last leg of my journey to their apartment, having boarded the shared taxi from Tel Aviv to Netanya. “She’s been shouting and yelling. She pushed me out of the bathroom and swore at me and called me a ‘dirty old man.’ Then she refused my help getting dressed. I wanted you to know.”

I was still about forty-five minutes away, so there was not much I could do, but I did say hi to Mom on the phone. I was hoping I could help change the situation if Mom was still in a bad mood when I arrived.

Forty minutes later, Daddy called me again. By this time I was in Netanya, walking the few blocks from the central bus station to their apartment.

“Mom was insisting she needed to go out,” he said. “We had a hard time convincing her to stay inside.”

“Oh.” I was puzzled. “Why didn’t you take her out if she was insistent?”

“I wasn’t dressed yet,” Daddy replied. “And you were on your way.”

It wasn’t worth being frustrated from afar, but I could hear the annoyed tone in my voice as I responded.

“If she wants to go walking, let her go walking,” I said. “And if you don’t want to go, you can send Sahlee (the caregiver.) Don’t use me as an excuse.”

“It’s too late now,” he said. “She’s watching her favorite Danny Kaye video, and you’ll take her out when you get here.”

Five minutes later, as I greeted her at their door, Mom was searching for her coat and bag and hat so that she could go out. She said goodbye to us as if she was heading out by herself. She was very surprised when I told her I’d go out with her.

Mom was in a good mood when we left the house, and in fact we had an agenda. I’d made a salon appointment for Mom to get her hair cut. We walked through town, stopped for a quick cup of coffee, then headed to the salon. Mom was effervescent, singing and smiling, and when she saw the beautician, she praised her many times for her excellent work. At no time was she angry or bombastic or moody. Even when we were back at her apartment and I cut her nails—which Mom begrudgingly let me do—she was happy and relatively calm.

She did say some strange, disjointed things. As we were walking home, Mom tried to tell me that people she didn’t know often recognized her in the streets. “Sometimes they see my funny face and they say hello,” she said.

“Why is your face funny?” I asked.

“It is. There’s nothing I can do about it,” she said. “But I don’t know them.”

This was wonderfully ironic as Mom constantly greets strangers with warmth and unfounded familiarity whereas the people she doesn’t recognize who say hello to her are undoubtedly friends or acquaintances. And let’s not forget that the people who care about her the most and the ones with whom she is most familiar are often addressed with anger and curses.

Later on, I called to say I’d returned home safely only to hear Daddy’s frustrated voice on the phone again. “I can’t get her to sit still and watch anything,” he said. Mom’s caregiver Sahlee was on her break, so it was up to Daddy to help her.

“Why don’t you read a book together?” I asked. “Or sing some songs. Or look at photos.”

I realized that was the difference between living with someone with Alzheimer’s 24/7 and visiting once a week. The time I spend in Netanya is fully dedicated to Mom and all her needs. There is no need to focus on other tasks and chores as I do in my own home. I don’t have to worry about anything other than entertaining Mom and giving her my undivided attention. And I can also give advice freely. I have to accept, though, that it isn’t always welcome or wanted.

With no alternatives and pangs of sympathy for my dad’s frustration, I hung up the phone and started preparing dinner.

This isn’t exactly what I made for dinner, but in honor of my mother-in-law’s visit, I indulged and made her lemon meringue pie. What do we have a lemon tree for if not for this? With Passover just a week away, and the stores already carrying Kosher for Passover products, I decided to make this pie kosher for Passover, too. There’s not much difference in the Passover recipe and the year-round recipe. I’ve listed the ingredients for the regular crust and for the Passover crust. Enjoy!

Lemon Meringue Pie
Love is a great catalyst for trying new things. As a young bride, I wanted to please my mother-in-law by making one of her favorite desserts. I hope I succeeded.

Regular Crust:
2 cups ground petite beurre cookies
½ cup brown sugar
1/3 cup oil

(These can be ground in a mixer or in a closed plastic bag with a rolling pin.)

Pesach Crust:
1 cup ground almonds
1 cup fine matza meal
½ cup brown sugar
1/3 cup oil

Filling:
1 cup sugar
4 teaspoons potato starch
1 cup fresh lemon juice
4 egg yolks
2 whole eggs
Zest of 1 lemon

Meringue:
4 egg whites
½ cup sugar
½ teaspoon vanilla
½ teaspoon lemon juice

Directions:

  1. In a small bowl, combine ground almonds, matza meal and sugar for crust. Add oil and mix until the “dough” can be pat into pie pan. Cover sides of pan to edges. Bake at 350° for 15 minutes. Let cool.

  2. Separate eggs. Place yolks in a small bowl temporarily. Let whites sit in a glass bowl.

  3. Mix sugar and potato starch for filling in a saucepan. Add lemon juice, yolks, eggs and zest. Stir until sugar and potato starch are dissolved. Turn on medium flame and continue stirring until mixture begins to thicken (may take several minutes). Bring to boil then remove from heat. Pour over cooled pie crust. Place in refrigerator until meringue is ready.

  4. Beat whites until foamy. Slowly add sugar, vanilla and lemon juice. Continue beating on high for 2 or 3 minutes until stiff peaks form.

  5. Pour meringue over pie, making sure to spread to edges of crust. Form peaks for decoration with your spatula (or spoon).

  6. Set oven to broil. Move oven rack to highest slot. Place pie on oven rack and watch carefully as top of meringue browns. Remove immediately from oven when desired effect achieved.

  7. Keep pie in refrigerator until ready to serve.

    About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin College. Miriam is a 20+-year resident of Israel and a mother of three.

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Mar 152017
 

These days nearly every member of Congress is using Twitter, Facebook or Instagram on a regular basis. The era of congressional offices sending out press releases as the main way to convey the Member’s message is long gone. Now, both staff and members alike use social media to push information out immediately and interact with their constituents every single day. Because social media has become the main form of communication with most congressional offices, advocates have had to adapt the way they interact with Congress.

I’m proud to announce our newest way to engage with members of Congress, by using personalized videos. Advocates and the general public can visit alzimpact.org/engage and send a short, personalized video message directly to their members of Congress. The Alzheimer’s Impact Movement (AIM) is launching the video platform in conjunction with the 2017 Alzheimer’s Association Advocacy Forum. Advocates can use the tool to urge Congress to increase federal Alzheimer’s research funding and make fighting this disease a national priority. Please take a minute to send a video to your members of Congress and then share with your social networks.

Additionally, the Alzheimer’s Association is urging all of its advocates to help increase the impact of the 2017 Advocacy Forum by joining Thunderclap. More than 1,200 advocates will flood Capitol Hill on March 29 to ask Congress for increased research funding. Thunderclap allows all Alzheimer’s advocates who can’t attend the Forum a way to amplify our unified message through social networks like Twitter and Facebook.

With a new Congress and administration, Alzheimer’s advocates must increase awareness about this devastating disease and educate leaders about the Alzheimer’s crisis and our policy solutions. Please help the Alzheimer’s Association and AIM continue our momentum on Capitol Hill during this year’s Advocacy Forum and sign up for both alzimpact.org/engage and Thunderclap, and then share with your social networks.   

 

About the Author: John Funderburk is the Senior Director of Advocacy for the Alzheimer’s Association and Senior Field Director for the Alzheimer’s Impact Movement (AIM). John oversees the Association’s nationwide grassroots and grasstops federal and state advocacy programs and manages its national issue advocacy campaigns, along with working to build AIM’s membership base. 

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