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 202016
 
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My wife Kim and I in Jamaica.

In 2015, I was diagnosed with younger-onset Alzheimer’s disease. My father, 85, and the youngest of 10, is living with Alzheimer’s, as well as one of his brothers. Their father also had the disease.

Still fresh in my mind is an early incident at my grandparent’s home. My grandmother was trying to tell my grandfather where the closet was so that he could hang his coat, as he had done so many times before. He was standing right in front of the closet, but couldn’t seem to find it. I recall her looking at me, saying, “He’s confused, honey.”  At that time I had no idea how he could have been possibly confused. That event, more than 45 years ago, left an indelible mark in my memory that resonates today as I live my daily life with Alzheimer’s.

My parents and daughter packing goody bags for the kids of the Palm Grove church.

My parents and daughter packing goody bags for the kids of the Palm Grove church.

My faith helps me approach each day with hope. Almost every morning I stand in the shower and I say to myself, “I won’t be here forever, but I’m here now, so I need to live and advocate today.” I know that God has my back.  I’ve always been a doer and God has given me another opportunity to glorify him, as I know I have been prepared for this journey.

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In Ocean City with daughters Aubreigh & Erin, my wife Kim, son Michael &  his girlfriend Joanna.

 

 

 

My wife Kim is amazing, and her compassion and faith are exceptional.  She has stood by me 100 percent through this entire experience.  As soon as I was diagnosed, she began researching the disease and joined a care partner support group through the Delaware Valley chapter of the Alzheimer’s Association. We are an eHarmony success story, married 10 years now! This is the second marriage for both of us and blending our families over the last decade has been both challenging and rewarding.  We credit the success of our marriage to our strong faith.  We know that we could not navigate the complexities of this illness without God to sustain us.

My mom is my dad’s caregiver. Kim and my mom drive us to our appointments, as we’re both unable to drive. They share the belief that Alzheimer’s is nothing to be ashamed of.  It’s not contagious and it does not define who a person is. They advocate for us and support us every step of the way.

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At the Jersey City Walk to End Alzheimer’s.

Although my dad can’t lead a very active lifestyle due to a stroke, he loves to tell stories about his family and his time serving our country during the Korean conflict. It may be challenging to pull everyone together for family activities these days, but we get together as much as possible.  We spend a week every year in Ocean City and go on camping trips.  We are also very involved with our church; Kim and I have been working for many years as missionaries to a children’s church in Jamaica.

In addition to her monthly caregiver support group, Kim attends state advocacy meetings and is my main source of support at the Walk to End Alzheimer’s where I have spoken on behalf of others living with Alzheimer’s at the promise garden ceremonies. She does so much for me and I try to show her gratitude all the time. I recently surprised her with a weekend to a cozy bed and breakfast in Lancaster, Penn., to enjoy the autumn colors!

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At the church where we do missionary work.

I often think that it’s the family members and caregivers that struggle more than the person with the disease. I know the job of a care partner or caregiver is very challenging and can so often go unrewarded or underappreciated, so I make sure to thank Kim for the things she does for me on an everyday basis.

Kim and Mom, and all care partners and caregivers: I know your job is not easy.  Seeing your loved ones change in such a drastic way, the promise of a long life together seemingly dashed with the diagnosis—I know it’s difficult.  You have to do everything in your power to maintain what control you do have over the situation.  For myself, and for some of those with an Alzheimer’s diagnosis who have become incapable of expressing our emotions – thank you from the depths of our hearts.

Our hearts are still beating.  We’re still here, we still love.  Thank you for loving me … thank you for loving us.

About the Author: Jeff Borghoff is raising awareness of Alzheimer’s disease as a member of the Alzheimer’s Association 2016 National Early-Stage Advisory Group (ESAG).

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.

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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.

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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.   

 

 

 

Oct 072016
 

“We have a great opportunity,” said Ruth Gay, our chapter’s chief public policy officer, reaching me at San Francisco International Airport early on September 29 as I was about to board a flight to New York.  “It’s a real long shot,” she explained, “but as an AIM member and volunteer advocate, would you like an opportunity to ask a question about Alzheimer’s disease at the next presidential debate?”

“Absolutely!” I replied, “What do you need me to do and when?”

“Can you possibly get something posted in the next 30 minutes?” Ruth said. “I’ll send you some ideas and a link to the Open Debate Coalition website.”

Standing in line, juggling my luggage, I managed to type this question into my mobile phone, editing on the fly to comply with the 80-character limit:  What’s your plan to tackle the large public health crisis:  Alzheimer’s disease? As a supporting statement, which couldn’t exceed 200 characters, I wrote: An estimated 5.4 million Americans are living with Alzheimer’s disease.  Our nation’s most expensive disease, it is the leading cause of death in US without any known prevention, treatments or cure. 

I pressed send, confirmed the posting and tweeted a link just before boarding. By the time my plane landed, we were at 1,500 votes. I emailed our Chapter Board and staff, asking them to vote and activate their networks. And then my focus turned to spending three wonderful days in New York.

But early Sunday morning, October 2, I received an email from the Open Debate Coalition, advising that our question was now in the top 50 and asking:

  1. Would I be willing to talk to a reporter about the Open Debate process, the content of my question, and my personal connection to it?
  1. Would I send a simple video, shot from my phone, of me asking the question for “the candidates — and America! — to see the actual people who asked these questions”?
  1. If the opportunity presented itself would I be willing to attend in person?

I immediately answered yes to all the above, and forwarded the video (shot by my husband) to the Coalition.

In the meantime, the Alzheimer’s Association legislative advocacy team and Alzheimer’s Impact Movement (AIM) staff started engaging social media to mobilize our advocates across the country. Our question began rising in the rankings: number 33 out of 9,000 by October 4 in the morning, number 30 by midday. The e-News alert went out on October 5 and we received more than 500 votes in less than 20 minutes. Our question jumped to number 23, and by late afternoon had reached number 15, now of more than 10,000 questions. When we awoke on Thursday, October 6, our question was in the top 10, and had climbed to number nine out of 12,000 questions by the end of the day.

It was a giddy feeling — to think we’d have the chance to reach more than 80 million people about the need to end Alzheimer’s disease!  My mobile phone was at my side every moment, just to be sure I didn’t miss a call from the Coalition.

By Friday morning, with the debate less than three days away, our question had slipped a bit in the rankings but is still growing in support. Organizers have said the Top 30 will be considered and with some questions on duplicate topics, I’m still feeling optimistic about our chances. And I’m not done growing support for our question as we head into the final days of voting.

On Sunday night, I’ll join tens of millions of Americans watching the debate. Of course I’m hoping our question will be included, or at least that the candidates will mention Alzheimer’s disease on their own initiative, now that so many people have shown how much they care about this issue. But regardless of the outcome, it’s been exciting to see our network of advocates mobilize around this special opportunity to raise Alzheimer’s awareness. Many thanks to everyone who voted for our question and spread the word. It gives me even more confidence that together we will end Alzheimer’s!img_1798

To vote for Karen’s question, please visit: bit.ly/Ask4ALZ

About the Author: Karen Stevenson is the board chair of the Northern California & Northern Nevada chapter of the Alzheimer’s Association.

 

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
 
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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.

Sep 012016
 

I’ve been a proud team captain for Walk to End Alzheimer’s for five years. I walk for all those living with Alzheimer’s, including myself.

I started having trouble with my memory in my 40s. I worked in a doctor’s office as a nurse and suddenly I forgot how to calculate inches to feet in height. Then, I couldn’t remember what shots were given at what age. Eventually, I forgot how to spell the doctor’s name.Walkimageblog

My family doctor performed a mini dementia test and referred me to a memory center, where I was diagnosed with younger-onset Alzheimer’s. I thought of my daughter – am I going to see her get married, or see any grandchildren grow up? I’m 56 years old, and my mom is my caregiver. That is one truth I never thought was possible.

My sister reached out to the Alzheimer’s Association and I was connected with someone at my local chapter. I saw that there was a need for people who are in the early stages of dementia to meet and talk so I started the first Memory Cafe in Lancaster County. I’m also a mentor, speaking to people who are newly-diagnosed, and I raise awareness in the community by fundraising. One of the biggest ways I fundraise is through Walk to End Alzheimer’s.

I enjoy watching Walk to End Alzheimer’s continue to grow every year. Seeing donations come in that will support caregivers and those living with the disease means so much to me. Every step taken during Walk to End Alzheimer’s is a step closer to a cure, no matter where you walk. I’m lucky to use some of the skills I used as a nurse to encourage others to join me and to educate the public. And I’m not only helping them – they are helping me.

Here is what I know: Alzheimer’s is not just an old person’s disease. Alzheimer’s is not funny. Alzheimer’s is a disease of the brain, not a mental health issue. Alzheimer’s doesn’t care who you are or what you do. Alzheimer’s affects us all.

Alzheimer’s diagnosis doesn’t mean you have to stop living. You still have a lot to offer to the community and a voice (and feet!) to help bring awareness to the disease. This is why I walk to end Alzheimer’s.Mary Read 2015 ESAG Headshot

 

About the Author: On September 24, Mary Read will walk in Lancaster, Pennsylvania to raise awareness and funds for Alzheimer’s research, care and support resources for local communities. She encourages people with Alzheimer’s and dementia to enjoy life every day. You can visit her team page here

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Sep 012016
 

image001Family, fitness and faith are all at the center of my being. I was a caregiver for 13 years for two of the most important men in my life – my fathers. Like many caregivers, I experienced the joy and heartbreak of caring for my parents. It was a journey that sometimes made me laugh and sometimes made me cry.

When my father was diagnosed with dementia after suffering from two strokes, I was concerned about his quality of life, so I moved him into my home and hired nurse assistants to help me take care of him. Eventually, God sent me an angel named Lenell Wyatt who moved into my home and took care of my Papa as if he was her Papa.

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It was a blessing to have Dad at home with me. We had a beautiful relationship. Every morning it was like waking up to sunshine.

There were many ways dementia changed my Dad, but I made sure he was always physically, mentally and spiritually stimulated. To help him develop a new norm, I took measures to focus on his wellness daily. We kept busy with senior church programs, bingo and movie nights, field trips, aquatics, art classes and tennis. We also had date nights once a week. Papa loved to go salsa dancing…well, he stood in one place snapping his fingers while the pretty girls danced around him. Every single day was full of these sunny moments.


I believe everyone can live their best life, and this includes people with dementia and Alzheimer’s – and their caregivers.

With more than 25 years in the fitness business, I have seen firsthand how having a purpose, the right mindset and setting goals can help create change. To continue the legacy of my father, I’m educating, inspiring and empowering people about dementia, whether it’s about caregiving, the emotions that come along with the disease or the financial impact it has on families. I would like to support families who have loved ones living with this disease and keep the lines of communication open so that other people don’t feel alone in their fight.
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That is why I am walking in Walk to End Alzheimer’s this year.

My Dad passed away last June. I put my head on his belly, and saw him take his last breath. He was surrounded by those that he loved, and he was ushered into glory with the lead singer from the praise and worship team singing “Amazing Grace” and “Precious Lord.” It was the greatest honor to take care of him and he lived his best life.

For my Papa and millions of others like him, I continue to work to make sure my story is heard.

I know my passion and purpose is to connect with families and friends at Walk to motivate and reach their souls! Our shared goal is a world without Alzheimer’s. Let’s put strategies in place to make that happen. Let’s walk.

 

image004About the Author: Donna Richardson is an international lifestyle and fitness expert, author and talk show host. She has starred in award-winning videos for Nike, ESPN and Beachbody, the best-selling “Buns of Steel” and now her own “Old School Dance Party Workout.” She has served on the Women’s Sports Foundation Board, the LPGA Foundation Board, the Robert Wood Johnson Foundation Board and as an Advisory Board Member for the Boys and Girls Clubs of America. She is an Ambassador for the “Let’s Move” initiative, has taught at the Oprah Winfrey Leadership Academy for girls and is the founder of Grow Green Get Fit, a nutritional, physical and environmental curriculum for school-aged children taught at YMCAs across the country.  Donna is the only member to serve on both President Obama’s and President Bush’s Council on Fitness, Sports & Nutrition (PCFSN). She was inducted into the Fitness Hall of Fame and named “One of the Most Inspirational Women in America” by Essence Magazine. Join her at the Walk in Dallas, Texas.

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