Nov 142016
 

Today, there are an estimated 5.4 million Americans living with Alzheimer’s disease. And while most people associate the disease with old age, the fact is there are 200,000 Americans under the age of 65 living with it today. As with all forms of the disease, early-onset Alzheimer’s is a progressive, terminal disease, which cannot be prevented, cured or even slowed.

Since the onset can occur in people as early as in their 30s and 40s it often strikes during an individual’s prime working years, and as the disease progresses it prevents gainful employment. As a result, individuals are coming to grips with a devastating diagnosis all while losing employment and the salary and benefits that come with being employed. These individuals and their caregivers then must figure out how they will pay for their care.

Thankfully, since 2010 the Social Security Administration (SSA) has helped these individuals by adding Alzheimer’s disease to its Compassionate Allowances Initiative. The initiative identifies debilitating diseases and medical conditions that meet the SSA’s disability standards for Social Security Disability Income (SSDI) or Supplemental Security Income (SSI). This allows for faster payment of Social Security benefits to individuals with Alzheimer’s disease, mixed-dementia and Primary Progressive Aphasia.

The Alzheimer’s Association actively worked with the SSA for the inclusion of early-onset Alzheimer’s disease and advocating on behalf of individuals with early-onset (younger-onset) Alzheimer’s disease. As the SSA was considering this decision, the Alzheimer’s Association provided comments to the administration and commissioner, held numerous meetings with SSA staff to advocate for the inclusion of Alzheimer’s disease and related dementias, and Alzheimer’s Association CEO Harry Johns testified during the SSA’s public hearing about the inclusion of early-onset Alzheimer’s disease. Since then we have worked closely with the SSA in support of the implementation of this Initiative nationwide and to educate our community about this benefit.

And since its implementation it has had a profound impact on the Alzheimer’s community, helping thousands of families including Tom and Julie Allen. Tom was looking for a way to help manage the costs of Julie’s Alzheimer’s care, since his retirement and two part-time jobs were not enough to cover the large costs of Alzheimer’s disease. Through working with the Alzheimer’s Association and the SSA he was able to secure for Julie the SSDI benefit.

Social Security benefits are very important to individuals with early-onset who are unable to work and have no other source of income. At the Alzheimer’s Association we hear from family caregivers about the challenges they face paying for care. As was the case with Tom, the financial complications and solution finding falls to the caregiver. That is just one of the reasons why we celebrate November as National Family Caregiver Month and we take time  to honor the 15 million caregivers for those living with Alzheimer’s disease.

To learn more about how SSDI works and if it may be available to you, visit www.alz.org/SSDI or call our 24/7 Call Center at 1-800-272-3900.

This blog appeared originally on the Social Security Administration website blog.  

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 Movementegge_2014-1

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Nov 142016
 

We sat down to talk with Richard Lui, news anchor for NBC and MSNBC and long-distance caregiver for his father, who is living with Alzheimer’s. Every week, Richard travels coast-to-coast to be with his family.

Tell us about your father Steven’s Alzheimer’s diagnosis and how it came about.

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It began with a diagnosis of dementia. The interesting part is my Dad never had a great memory – it was something we joked about. However, what started to happen was much more extreme.

Dad is one of 13 children in his family, and at Christmas, his youngest sister Fannie pulled me aside and said, “I’m concerned, Steve is forgetting our names.”  He agreed he should get tested. This was about five years ago, and it resulted in a diagnosis of early signs of dementia. It wasn’t until about a year and a half after that that he was diagnosed with Alzheimer’s.

I’ve always traveled back to San Francisco from New York for family gatherings. During these visits, I was able to see moments in time — snapshots of my Dad, if you will — and I began to notice the differences in him. It was probably more nuanced for my mother, who lives with him, but I saw it, and now make the 5,000-mile round trip to see him once a week most months.


As a caregiver, how do you make this long-distance, long-term travel work with your schedule as an anchor and reporter?


The practice of consistently going back and forth helps me gather the information I need in a short amount of time. I try to stay with my parents when I come back so I can observe the nuances and changes…how it’s difficult for Dad to brush his teeth or walk down the block to get a haircut. Sometimes it’s hard to put on a strong face, but I do what I can to help my Mom, who is Dad’s primary caregiver.

From a professional standpoint, I am so thankful my supervisor understands the situation I am going through. When we sat down to talk about changing my work schedule, I found out she was also a long-distance caregiver who traveled to take care of her mother. She knew I had to start thinking about options immediately. Like a good journalist would do, she brainstormed options, and six months later our strategy was in place. My boss has been absolutely supportive of my need to go back west, having four to five days off and working two and a half days a week. That is very uncommon for very practical reasons of the way journalism works but NBCUniversal has been nothing short of amazing.

Your mother was born in China, and your father in San Francisco’s Chinatown. Have there been difficulties or cultural barriers in finding a support system or talking about the disease?

We are a multigenerational Asian American family, and each of us assimilates differently, just as any American family does in their community, city and social circles. When it comes to the way we handle my father’s diagnosis, each brings individual strengths. More broadly, Asian American and Pacific Islander (AAPI) families like ours take on responsibility of caregiving without thinking twice  – an unwritten and sometimes unspoken practice that family is number one. But interestingly, despite this core family strength, few talk about it, nor share best practices openly. That said, my Dad doesn’t fit the stereotype. He was always open to whatever had to be done when he was sick and the same is true with his Alzheimer’s.

One decision we made as a family was my Mom and Dad’s living situation. Instead of moving because of my childhood home’s dangerous stairs, we decided to remodel their house so my Dad wouldn’t be shocked by a strange living situation which could cause more loss of memory. Instead, we created a stairless ranch level apartment in their tall “Full House” type San Francisco home we all grew up in that would help Mom and Dad’s long-term living needs.

Interestingly, these are not topics we would typically talk about…long-term care, planning ahead…but because my father is so open, we were able to talk about it bluntly.

richardstevenHow has your profession helped you handle your father’s Alzheimer’s?

Taking a plane is second nature to me; it’s like walking out the front door. That is why, despite having the most demanding travel schedule of my siblings, going back once a week to help my parents is not a big deal. And as a journalist, I learned years back that in order to tell good stories I had to emotionally access parts of who I am that I wouldn’t have had to otherwise if I was not a journalist. I feel comfortable asking difficult questions about care facilities, financial planning and other sensitive topics. I don’t want to do it, but we need to.

How did growing up with a close family help you face the challenge of being a caregiver?

We’ve always been a tight-knit extended family. Twice a year, my father’s side of the family would go to the cemetery and burn fake money and leave food for my grandfather, along with his favorites – whiskey and cigars. At Christmas, we would have 90 people together – cousins, aunties and uncles all celebrating the holiday. From road trips à la the “Vacation” movies where we piled into the station wagon to see my Mom’s family in L.A., to gathering for Ching Ming, it was never explicitly said “you have to take care of your family” – it was simply understood. We were close, and we will always be close. It’s just how we are. Caregiving is an extension of that.

What are the tough moments you’ve faced since your father’s diagnosis?

There have been many emotional moments. Most recently my father has lost the ability to shave, and I helped shave him for the first time. He laughed and smiled and thanked me as I cleared his whiskers. As a young man, my father was the one who taught me how to shave my chin. So this latest change was symbolic. And it was saddening. But it was my honor, too. I want to be the one who shaves him every day – but I can’t.

What moments of joy have you found since your father’s diagnosis?

I find moments of joy every time I go home! My Dad is a joyous person, which is much different from his personality before the diagnosis. He was a pastor and couldn’t support the family on his salary, so he became a social worker to have a steady income, but that didn’t pay much either and he wasn’t built emotionally for social work’s noble but trying tasks. He cared too much and was often stressed.

As a social worker, he was forward with people and told them what they had to be prepared for. In a way, he was equipping himself to be the happy embracive person he is today. And there’s the silver lining. He accepts his diagnosis for what it is.

For my own part, I’ve had to accept Dad’s Alzheimer’s diagnosis spiritually and emotionally. There was a time when I would describe being with him like watching my father die in front of me. Now I see him being born again in front of me. Life is a stack of pancakes, and Alzheimer’s takes the top pancakes little by little until you’re left with none. But through this process, my father has shown me another side. He hugs me and kisses me and tells me that he loves me over and over again. This is the person he always was who I’m only now getting to know.

Your mom is your father’s primary caregiver. What has her experience been like, and what have you drawn from her strength?

Mom talks to one of her good friends whose husband also has Alzheimer’s. She also talks to some of her other close church friends who are also caregivers every couple of weeks. She has a support system but despite that, I know this road hasn’t been easy for her. In moments when she’s alone with my Dad and I am in the other room, I can hear the frustration of a person who had been steely, personable, forthright and honest her entire life. She comes from a golden generation of exceptional values, but I can sometimes see the crack in her armor.

I listen to and look at the other women (who I call aunts) that my Mom gets support from. The commitment they’ve all made is exceptional, without a squeak or a squawk. I wish I could draw just a little bit of that attitude and energy into my life and do something to the degree they do—it’s amazing.

When I am at home in San Francisco, I sometimes hear Mom speak to Dad in certain ways and I tell her that he won’t understand. What she has said is too much; it’s too complex. “No, no no….if I say it to him, he will listen,” she says with her endless amount of hope. And sure enough — sometimes he does. She doesn’t give up. She is a hidden hero. All caregivers are.

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Richard Verdi, David Hyde Pierce & Richard Lui at the 2016 New York City Walk.

About Richard Lui: Richard Lui has had an illustrious career that has included roles in marketing, strategy and technology. Today Richard is a journalist and news anchor for MSNBC and NBC News and is known for his humanitarian charity work. He served as emcee for the 2016 New York City Walk to End Alzheimer’s.

 

Nov 102016
 

2016 marks the 5th year I have walked in Walk to End Alzheimer’s. This year, I was lucky to walk with friends and family, but there is one person I wish could walk with me – and I simultaneously realize that if she was here, I wouldn’t have the same compelling reason to walk. That person is my mom.

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When I was 15, my mom was diagnosed with early-onset Alzheimer’s at the age of 50.

The once bold and fiercely independent woman I knew quickly became a stranger to me. At first it was the little things, like forgetting to pick me up from school, or getting confused on a drive home from the airport. Then one day when I was 16, she looked me in the eye and asked: “What’s your name again?”

The day of my graduation, my mom refused to get ready, insisting that the clothing my dad had laid out for her was “for children.” At the last minute, she changed her mind and decided to join us. On our way home, we decided to stop to get some dessert to celebrate. As we made our way to the table to sit down, my mom started yelling at my dad: “I’m not going with him! He hits me! I am not going with him!” A moment of silence followed as we decided what to do.

alexmomWith Alzheimer’s, there is this inclination to hold onto what is “normal.”

That night after graduation and all throughout my mom’s fight with Alzheimer’s, my family and I fought the battle of how to maintain “normalcy.” That night, normalcy was having dessert with my family, because if my mom could make it through dessert, then maybe things would be okay. We could do what “normal” families do. Unfortunately, there is nothing normal about what Alzheimer’s does to a person.

We didn’t have dessert that night. 

My family could feel the eyes of the restaurant guests on us as my mom continued to yell out, and all we could do was smile a little with tears in our eyes as we reassured her: “It’s okay. We’re going to home, and it will be okay.”

On October 3, 2011, my mom passed away.

After her 10-year battle, she finally got to rest. Although I can’t change the fact that my mom isn’t here  –  and I can’t help but be glad that she’s no longer in pain or scared – I refuse to accept that her fight is over. I am now the one who has to fight. One way I choose to fight is by walking to raise money and awareness for Alzheimer’s research.

So why do I fight? Why do I walk each year, and look forward to future Walks?

I walk in honor and memory of my mom. I walk because I don’t want to have to walk for my friends…and I don’t want them to have to walk for me.

alexwithfriendsI also walk because I long to see the first survivor at a future Walk to End Alzheimer’s. Although I feel energized as I meet other people who are as committed to eliminating Alzheimer’s as I am, I wish we didn’t even have to think about Alzheimer’s as a threat.

The only way we’re going to get there is if we continue to raise money and awareness to end Alzheimer’s for good – and keep fighting. This year’s Chicago Walk is over, but I’ll be back next year; I will keep walking, and I hope you will too.

About the Author:  Together with her family and friends, Alexandra Magiera participated in Walk to End Alzheimer’s in Chicago, Illinois. You can visit Alexandra’s Walk page here.

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Oct 212016
 

Our mother came from Portugal after marrying our father in 1958. She didn’t know anyone and didn’t speak the language. She followed the love of her life and they raised a beautiful family. They taught me the meaning of true love, loyalty and dedication to family and friends.02_katie-mom-blog

Our father passed away in 2000, after 42 wonderful years of marriage. Although she had us kids and grandchildren as a distraction, she had a void that none of us could fill. She visited the cemetery every day and cried at the mention of his name.

In 2008, mom was diagnosed with Alzheimer’s and the days, months and years that followed were heartwarming and heartbreaking at the same time. Very early on she stopped talking about our dad and didn’t recognize his picture. That was a blessing but painful to think she could forget him.  Out of everyone, how could she forget him? They say God works in mysterious ways. Did mom get Alzheimer’s so she didn’t suffer without our dad?

Although she didn’t always know my name, she always knew who I was. She would often ask those around her “Where is my daughter?”  This will always be a comfort to me. Like so many children do, I took the time I had with my parents for granted. When we are young, we think we know everything and when our parents are gone, we realize they knew everything and we knew nothing.

We had daily help but my brother and I took turns caring for mom in the evenings and slept in the same bed with her for over seven years. She was home until she passed away on April 2, 2015. It was a sacrifice to leave our home and my husband in the evenings, but I don’t regret that for a minute. We had quality time we otherwise would not have had.  We laughed and cried and shared many special moments while she could still remember.

01_katie-mom-blogLater we repeated the stories she used to tell us over and over to her. She didn’t lose her smile, she didn’t lose the love for those around her, but she did lose her dignity. Mom was a very private person and I could count on one hand the times I saw her in her bra and underwear before Alzheimer’s, then suddenly I’m changing her diapers. We promised our dad we would take care of her and we kept that promise.

It’s time to take action against Alzheimer’s. We need to urge our public officials to vote in favor of increased funding for research so future generations don’t have to be affected by this terrible disease. I have a truly a wonderful life and I want to remember it all!


About the Author:
 Clara Stevens is the mother of actress and singer Katie Stevens. Read Katie’s blog, The Hardest Goodbye: A Granddaughter’s Story.

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Oct 212016
 

I was 15 years old when I found out my grandmother was diagnosed with Alzheimer’s disease. I had heard of it. I knew about it from friends who had grandparents who suffered through it (and I’d seen The Notebook a million times), but nothing can ever prepare you for what comes after the diagnosis.01_katie-blog

I tried to convince myself over and over that she would suffer less because there would come a point that she would no longer know that she was sick. But I didn’t realize that she would always suffer. She would suffer in the confusion of not knowing who she was around. She would suffer in the times where she would no longer know how to feed herself, bathe herself, or even walk by herself.  And as her family, we would suffer watching the matriarch of our family, someone who was always so strong and who took care of everyone, fade before our eyes.

My grandmother gave Alzheimer’s quite the fight. She never let it dim her light. No matter how bad the day was, she always found a way to smile, and made the rest of us smile around her. However it was always difficult. I moved away to California to pursue my dreams at 17, which is what she wanted for me, but I couldn’t get over the fact that I wouldn’t be there for her as she progressed in the disease. I called her every day, FaceTimed with her and came home as often as I could. The heartbreak set in every time I left home, because I never knew if that was the last time I would see her again. And every time I said “I love you” to her in the last few years, my mom would have to tell her to, “Say I love you, too.”

The last time I saw my grandmother was during Christmas break of 2014. I don’t know why, but I had an overwhelming feeling that that would be the last time. I went up to her room where she sat in her chair most of the time, and I knelt beside her and held onto her hands. I knew at this point the disease had taken hold of her so much that I could literally say anything to her and it wouldn’t confuse her or necessarily register. So I sat there and said my final goodbye.

I thanked her for shaping me into the woman I am today, for her never-ending love, for her support, and I told her she would always be my angel. I looked at her and said, “I love you Vovo.”  She smiled at me, and without anyone telling her to, and without hesitation she said, “I love you, too.” In that moment I knew I had to let her go, and I promised her that I would do all that I could to find a cure.02_katie-blog

I lost my grandmother, my best friend, on April 2, 2015. Alzheimer’s may have taken her mind and her strength, but it could never take away her love, her kindness and her beautiful heart. Life is about creating ever-lasting memories, and my wish for the world is that we all are able to remember those memories when it’s our time to leave this earth. I will spend the rest of my life trying to help find a cure.

 

About the Author: Katie Stevens is an actress and singer best known for starring in MTV’s scripted series “Faking It.” She is an Alzheimer’s Association celebrity champion, working to raise awareness for the cause in honor of her grandmother who she lost to the disease. Katie also serves on the Hilarity for Charity committee. 

Coming Soon: Read Katie’s mom’s piece, Remembering Mom: A Daughter’s Story.

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Oct 132016
 

When my mother was diagnosed with Alzheimer’s disease, I was a healthcare professional working in assisted living. I didn’t have much personal experience with dementia or first-hand knowledge of what it would be like to walk with someone on this journey. Suddenly, it became my mother’s journey and, eventually, my story as well.sheila-1

My sisters and I bought every book we could find about this terrible disease. “You read these three, I’ll read these four.” We felt desperate to learn as much as we could to help our mother. The books, along with the Alzheimer’s Association’s website and blog, were so helpful to us! I remember reading about the stages of the disease, and I could see my mother’s path in front of me.

That path led us to Walk to End Alzheimer’s. How wonderful to have an actual event to share with others on this journey! Whether you’re a person living with Alzheimer’s or family members representing and supporting loved ones, Walk is a place where you connect with people who truly understand the challenge and heartbreak of this disease. You feel less alone when you realize you aren’t the only one fighting this battle. True strength in numbers!

In 2010, my sister, Pam Lindsey, and I gladly volunteered to be on the publicity committee for Walk and the annual fundraising banquet. Pam documented Walk in a special video, as well as a song that I wrote for my mother and performed at the banquet. We felt it was a special way to honor her and all the other families struggling with Alzheimer’s.

After going on this journey with my mother, I knew I wanted to help others who were on this same daunting path. I was grateful for the opportunity to come to work at Brookdale Senior Living’s Belle Meade location, where a true continuum of care for those with dementia is available. I’ve now joined my co-workers as part of Brookdale Senior Living’s National Walk team. I’m very proud to be part of a company that is so involved with a great cause.

sheila-2It’s both exciting and comforting to attend an event that renews everyone’s passion for this rapidly growing cause. Every day I remember the devastation that Alzheimer’s disease has brought to my family in losing my mother, grandmother, mother-in-law and her mother as well. I am grateful to the Alzheimer’s Association for all they do to help so many.

I know my mother would be happy to know that our story helps others. I have her photo on my desk so that those I help can see the woman who inspires me to do this every day. I lead two monthly support groups to help families deal with the loss, grief and unmerited guilt that comes when they realize that they can no longer care for their loved one at home. I try to help them understand that in getting professional help, they are not doing this to their beloved, but for them. For those fighting Alzheimer’s disease, there is still a life to be lived while focusing on what they still can do, instead of what they can’t.

As I remember my mother’s battle with Alzheimer’s, I remember her courage, strength and bravery which set my life on a path I could have never imagined. That path is to help as many families who struggle with the disease as I can. Her fight continues through me.

About the Author:  Sheila Uselton is the director of sales and marketing at Brookdale Belle Meade in Nashville, TN. Walk to End Alzheimer’s – Nashville is on October 15.

Oct 112016
 

“Come on, Carlen,” Martha said. “Let’s get out there now!” My wife was anxious to see two of her paintings on exhibit in an art show on St. Pete Beach.

Martha scurried straight to her paintings when we walked through the door that Friday.

art

One of the pictures that Martha exhibited, a self-portrait. It hangs in our living room, where I’ve seen it thousands of times.

“Look, here they are,” she said, grabbing my hand. You’d think there were no other paintings in this show, I thought as I smiled. She beamed as she looked at them and then she showed me their price tags: $200 each. We returned Sunday afternoon to see if the paintings had sold. They had not, but that didn’t matter.

Eighteen months earlier, Martha had been diagnosed with Alzheimer’s. My wife was a confident woman. She’d served on the St. Petersburg City Council, run for the Florida Legislature and was active in other civic and political affairs—all while being the mother of three.

But after her Alzheimer’s diagnosis, Martha’s confidence plunged to a depth I hadn’t seen. That was September 1997, just three weeks after she turned 50.

As Martha’s despondency dropped to a low ebb, our sister-in-law KK encouraged Martha to take a watercolor class together. This should be interesting, I remember thinking. She had never shown an interest in quiet hobbies like art. Martha liked action—dancing, tennis, singing, hiking and talking smack.

So I was surprised – stunned, really – when Martha said yes to taking the class. I think she agreed because she loved KK, and anyone who knew KK knew she could be persuasive. They started going to a watercolor class once a week at the St. Petersburg Art Center.

Her teacher Judi would hand Martha a sketch to paint, and Martha began to do so with such a complexity and boldness of color that reflected a dimension I had never seen in her before. I had no idea where that came from.

Neither did Judi, who pulled me aside one day. “Carlen, this can’t be taught,” she said of Martha’s use of color.

Martha painted scores of pictures large and small—turtles and fish in an orange-and-green sea; a multi-colored zebra; a blue-faced hippo walking atop an orange-and-yellow rainbow. You can see these and other paintings here.

What a delight to see this talent unfold out of a dark and scary place. Most of all, it was a joy to see Martha’s confidence surge.

As much as I enjoyed Martha’s artwork, I enjoyed hearing her talk about each piece even more, and seeing the glow in her face when she completed one. The lethargy so common with Alzheimer’s just melted away.

maddux

Our family in 1987, a decade before Martha’s diagnosis.

I remember Martha talking on the phone with our daughter Rachel, who was away at college. She was describing the art show, and was so excited and fluent. What a change.

And then, as quickly and quietly as they had emerged, after two years or so of painting, Martha’s desire and talent evaporated away. If it were only possible to bottle this confidence, I thought, as Martha’s mind slipped away to an unknown place.

A friend once told me to look for the little things that emerge and to be thankful for them. That was good advice, but it sure is hard to follow when you’re deep in a crisis like Alzheimer’s. Nonetheless, the memories of those two years of Martha and her art are warmly engraved in my heart.

About the Author: Carlen Maddux wrote a book about his family’s 17-year journey through Alzheimer’s. Just released, it’s titled: A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s. Carlen also launched a blog in September 2015, which can be found at www.carlenmaddux.com.   

 

 

 

Sep 292016
 

The memories of our grandmothers – and the urgent need to protect our own parents from this disease – propelled our family to join the Alzheimer’s Association in Walk to End Alzheimer’s. We walk because it is our greatest hope that, in the near future, no one else will have to experience this disease the way our family has.grandma-and-nanny

Our family grew up on Staten Island, New York. Surrounded by grandparents, aunts, uncles and cousins, we were lucky to live no more than a few blocks away from any given family member. This also meant that both of our grandmothers were very often at the dinner table with us.

When Grandma and Nanny were both diagnosed with Alzheimer’s and dementia and their presence at those meals became the after-dinner trip to the nursing home, our family began to experience what so many describe as “the long goodbye.”

For a few years after Nanny and Grandma entered nursing homes, we were able to bring them home for Sunday dinners, holidays, birthdays and anniversaries. We were just happy to have them close to us, spending precious moments together. But as the years went on and the disease progressed in each of them, removing Nanny and Grandma from their familiar day-to-day routine became detrimental to their well-being. It became increasingly clear that the women we loved and missed were with us physically, but perhaps no longer in spirit.


img_0859-1We did not despair, however. We shifted gears. Every celebration now began or ended with a visit to the nursing home.

Some of our most precious moments – both joyful and heartbreaking – happened there. Kate told Nanny about her engagement and saw a glimmer of recognition in her eyes; Paula sat with our mother as Grandma took her last breath; and our entire family surrounded our Nanny as she left us behind.grandma-and-horse

It has been almost three years since we lost our Grandma and under a year since we lost our Nanny.

While we felt the pain of their loss deeply, no one felt it more acutely than our parents, aunts and uncles.  We will never forget their daily dedication to their mothers, the profound sadness when their parent could no longer speak their name or the unbelievable joy when our Grandma or Nanny said a few words, held their hand and knew who they were.

It felt like our family had reached the end our long goodbye, but then we began to worry about the future, to the time when our parents, once the caregivers, might become the next diagnosed. That is why we walk. We walk for hope and for one more happy memory. We walk for Nanny and Grandma, our parents and millions of other families. We walk so that we will see a day without Alzheimer’s.

About the Authors: Kate Satin, Paula Caruselle and Paul Caruselle are siblings who lost their maternal grandmother Betty (“Grandma”) and paternal grandmother Anna Maria (“Nanny”) to Alzheimer’s disease. Along with Kate’s husband Russell, they are walking in Walk to End Alzheimer’s in Manhattan on October 29. View the Caruselle team page here.

 

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Sep 092016
 
steedwalk

Marilyn in Scotland

My mother Marilyn was diagnosed with Alzheimer’s in her late 60s, but I recognized that something was wrong in her mid-60s. She had been displaying signs of nervousness and was more forgetful than usual. She had always been a very outgoing and confident woman who dressed very fashionably. One day I noticed that her skirt hem was hanging and that she wasn’t taking the same care in her appearance.

My mother succumbed to Alzheimer’s disease one year ago. She was 82 when she died.

Now I am in my mid-60s. After experiencing what happened to my mother, I wouldn’t want anyone else to have to go through what she did. When she began wandering and leaving their home, my stepfather couldn’t keep up with her, and she was moved to a memory care facility. While there, she broke her hip. That led to three years in bed, never walking or talking again.

Every story about Alzheimer’s is heartbreaking.

We all have to watch someone we love slowly disappear. My family wasn’t even given a respite. One year ago, my stepfather too was diagnosed with Alzheimer’s. Our family’s first reaction was: “Oh no, not again!” It seems like almost no one we know is unaffected by this disease in some way. That is why I walk.

I have walked in Walk to End Alzheimer’s for eight years and have raised over $35,000.

I am an artist and have put on shows in which I have donated 100% of the proceeds to the cause. I collect for Forget-Me-Not Days and traveled to Springfield, Illinois this year to implore legislators to procure more funding for the Alzheimer’s Association. I never knew that raising funds for Alzheimer’s would become my passion. I walk because my mother was my best friend. I walk because she couldn’t walk for herself. I walk because I know she would have done the same thing for me.

It feels like we have rounded a corner. It seems like Alzheimer’s is finally getting the attention it deserves.

I have faith that a cure will be found. That takes a lot of funding and research, but I believe that if everyone who has any connection to Alzheimer’s would walk and spread the word by advocating on behalf of the Alzheimer’s Association, the cure might come faster. I have rarely met anyone who hasn’t been touched by this memory-robbing disease. We need to fight for all those people who can no longer speak for themselves, like my mother and so many others. We must walk.steed

About the Author:  Together with her family and friends, Judy Steed is participating in Walk to End Alzheimer’s with her team “Marching for Marilyn.” You can visit Judy’s Walk page here.

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Sep 062016
 

When you or a loved one receives an Alzheimer’s disease (AD) diagnosis and the equally bad news is that there isn’t a single medication on the market that can stop the mind-robbing disease in its tracks, it’s easy to feel hopeless. Who wouldn’t? But on the contrary, there is every reason to be hopeful. Why?

More than 150 Alzheimer’s and related clinical trials in the U.S. are looking for volunteers.

Each of these studies is testing an experimental treatment to discover whether one of them could be an effective treatment or a cure, the answer to so many prayers. Although the investigational medications currently being tested in clinical studies may not stop the disease progression or prevent its devastating escalation, every study gives researchers one more bit of invaluable information that will eventually lead to answers on how to treat Alzheimer’s disease.

Brain scansEffective treatments, however, will only come by way of rigorous research and the thousands of dedicated volunteers who enroll in clinical trials. This includes both people with Alzheimer’s disease and other dementias, as well as healthy volunteers. Researchers have learned much from previous studies, and while some might call them failures for not discovering that elusive “cure,” they are anything but failures. Every study teaches a lesson; like a puzzle, each piece bringing us a bit closer to the solution.

It is through clinical studies that researchers learn how brain changes caused by AD offer potential targets for new drugs that may stop or slow the progress of the disease.

Researchers are on a quest to learn everything they can about Alzheimer-related changes in the brain; the more they know, the greater the chance of finding a treatment that will prevent or even reverse these brain changes. The ultimate therapy may not be one drug at all but rather several aimed at various targets.

I think this combination approach holds the most promise and here’s why: When AIDS exploded on the scene in the 1970s, the medical community was as frustrated as today’s Alzheimer’s disease researchers – nothing could stop this medical hurricane. Eventually, after years of research and clinical studies, they found the elusive treatment…and it wasn’t one, it was several. They discovered that if they administered a cocktail of medications that targeted various biological aspects of the disease and gave it to people in the HIV stage that they could prevent HIV from advancing to AIDS. Today this drug cocktail is the quintessential treatment for AIDS that has saved thousands of lives. Many Alzheimer’s researchers believe a successful treatment for Alzheimer’s will eventually involve a similar “cocktail” of medications that will concurrently target different brain changes.

But to get there, we have to accelerate the pace of research. According to drugdevelopment-technology.com, “Patient recruitment is absolutely essential to the success of pharmaceutical research, and consequently patient care, but today nearly 80% of clinical trials fail to meet their enrollment timelines and up to 50% of research sites enroll one or no patients. Not only does this translate into as much as $8m in lost revenue for each day a drug is delayed, it also means that cutting-edge new medications are significantly delayed in their journey to the patients who need them most.”

Without volunteers to participate in research, the progress of discovery will not hasten. The faster the studies enroll participants, the faster researchers can discover if the drug they are testing works, and the closer we will get to a therapy or medication that may give people with Alzheimer’s a longer quality of life.

For example, the MINDSET study is testing an investigational treatment for mild-to-moderate Alzheimer’s disease that is taken together with the medication donepezil (Aricept®).  In a previous study, researchers observed that the combination of RVT-101 and donepezil improved cognition and activities of daily living, compared to donepezil alone.

Ready to help move research forward?

Visit the Alzheimer’s Association’s TrialMatch website. It’s free, all information is kept confidential and the Association provides extensive information on various clinical trials in addition to individualized trial matching.

Oh, and the hopeful part that I mentioned at the top of this post? By participating in a clinical study you get first crack at investigational medications that you can’t get any other way. You may or may not benefit from taking one of those medications.  But if you don’t enroll, then you can only wait until a medication or cocktail of medications is approved by the FDA. That could be years from now. And every trial – whether the results are positive or negative – provides learnings that move research one step closer to putting this horrific disease behind us.

About the Author:  Jeffree Wyn Itrich spent over nine years managing communications and patient recruitment for clinical studies at the Alzheimer’s Disease Cooperative Study (ADCS) at UC San Diego. The blog she managed at the ADCS, Alzheimer’s Insights, was named the number one Alzheimer’s blog in 2016 by Healthline.com. After her early retirement, she couldn’t stay away from the field and now works in patient recruitment at Bioclinica, Inc.

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