Sep 192012
 

For the past eight days, I have been walking—a journey of more than 200 miles in total. I chose to make this trek for each and every one of more than 5 million people suffering with Alzheimer’s disease—and in particular, for my father, Lt. Col. Carl Rabon Stephens, who is a retired army chaplain.

Why am I walking to Washington, D.C.?  Because we need to ensure the passage of $100 million dollars for Alzheimer’s research and support programs in the FY2013 federal budget.  The opportunity to elicit change is now and it begins with me.  My voice is powerful, and I want to use it on behalf of my dad.

My father spent his whole life caring for others in crisis and Alzheimer’s disease no longer allows him to do so. In just one short year, he lost the ability to continue his work with chaplains at Walter Reed Hospital as an expert on how to counsel soldiers coming home from Iraq.  The idea that one day he will no longer have these memories—those of his family and the countless families he has helped—is unbearable.

My father was recently moved into a nursing home because his wife and I can no longer provide the level of care he now requires.  As families each and every day shoulder the tremendous emotional, physical and financial toll of caring for a loved one with Alzheimer’s day after day, year after year, they need action today. They cannot wait and neither can I.

I am walking to Washington, D.C. to bring awareness to this worldwide health crisis and help focus attention on the urgent need for more research funding to help find effective treatments and ultimately a cure.  The current national level of Alzheimer’s research funding pales in comparison to other diseases and the time is now to attack this problem with the same level of commitment that we have other major life threatening diseases.

The investments made in research funding for cancer, heart disease and HIV/AIDs (close to $14 billion combined annually) have had positive results. They have resulted in more lives saved and more money saved in direct care costs. As a nation, we are currently investing nearly $500 million for Alzheimer’s research and Alzheimer’s will cost the nation $200 billion in direct care costs in 2012 – this includes $140 billion in Medicare and Medicaid costs. There is something wrong with this picture!  I am walking to create a picture, a new future and new possibility. I am walking to help change the trajectory of Alzheimer’s disease.

During my journey, I plan to bring this to the attention of any and all I can, through local, regional and national media, and by sitting down with as many elected officials as will meet with me. While my voice is powerful, our voices together are more powerful.

I want to encourage others—volunteers, caregivers, people with the disease, family members, YOU — to join me. Tell your story and reach out to your members of Congress to urge them to ensure the inclusion of $100 million in Alzheimer’s research funding in next year’s federal budget.  Sign up for a local Walk to End Alzheimer’s®. Sign up to be an Alzheimer’s advocate. Be part of the movement to end Alzheimer’s.  There is not a lot we can do for those who have passed on or who are currently fighting this disease, but we owe it to them to do everything we can to treat and ultimately end this insidious disease for future generations.

Together we can shift the course of Alzheimer’s disease.  Now is the time! Please join me!

Learn More:

About the Blog Author: Dave Stephens is the President of the Board of Directors of the Alzheimer’s Association of South Eastern Virginia. His father, Lt. Col. Carl Rabon Stephens, is living with Alzheimer’s. Dave resides in Virginia Beach with his wife, Debbie, and is the proud father of a 21 year-old daughter.

 

Sep 182012
 

To support causes near to her heart, jewelry designer Holly Freeman started a line of limited edition pieces with friend and actress Jamie-Lynn Sigler.  In honor of World Alzheimer’s Month, the two philanthropists designed a purple bracelet. Proceeds go to the Alzheimer’s Association. 

Alzheimer’s has touched so many.  I know firsthand.

 My grandfather was an incredibly talented artist. His works spanned from beautiful flowers and landscapes, to drawings of my favorite cartoon characters he made just for me and my friends. His mind was as precise and colorful as the paintings and drawings he created.

 But Alzheimer’s changed that. The details and precision that had always been a hallmark of his art started to shift. There were inaccuracies—the first sign to me that his health, and more specifically his mind, were declining. 

 As we spent time together while I attended college near his home, the changes became more and more painful to watch. Alzheimer’s was slowly taking him away – and more than anything, I wanted to be able stop this devastating disease.

 There were good days when Poppy would turn and look at me with a half smile when I called his name or squeeze my hand when we were sitting together. These moments were small gifts – moments of recognition.  But as the disease progressed, there came a point when my grandfather didn’t recognize me at all.

 I don’t want any other granddaughters to lose their grandfathers to Alzheimer’s disease. That’s what is driving me to help fund research, programs and care for people dealing with this disease. I’m taking action not only for the sake of the individuals suffering, but also to spare their loved ones the pain of simultaneously living through this disease.

 Back when my grandfather was diagnosed, we didn’t have such easy access to information. People weren’t on the Internet sharing their stories.  But today, we have the opportunity to come together and support one another. And we each have the opportunity to take action.

 Friday September 21 is Alzheimer’s Action Day. If we each choose to do something – even if it is as small as talking openly about Alzheimer’s – we can raise awareness, get more funding for treatments, and move closer to a future where our children won’t see their grandparents, their parents or anyone else slowly be taken by this disease.

Learn More:

This blog was first published by heart coach Amanda Daniels on her blog Voicestoshare.com.

A note from Amanda:
I met Holly five years ago in a baby group class. We immediately connected through our passion for jewelry and philanthropy. Her line, CJ Free Jewelry, is unique and timeless.  Last year Holly and her business partner, actress Jamie-Lynn Sigler, approached me about creating a red-corded bracelet in honor of my battle against heart disease.  I jumped at the opportunity to raise money and awareness for the American Heart Association. Today, Holly and Jamie are launching a new campaign with a limited edition bracelet to raise money and awareness for the Alzheimer’s Association. Alzheimer’s is an illness that is close to Holly’s heart. I’m honored to share Holly’s voice.
–     Amanda

Sep 202011
 
Kel Meg & gramps

February 16, 2004. That’s the day we lost my grandfather. Well, my dad’s stepdad, but he was always considered my grandfather, affectionately P-Pa, from the time I was born. That year, I was in my final semester of college and didn’t expect the end so soon.

The Diagnosis
I’ll never forget my grandmother sitting us down to tell us the diagnosis. My sister and I were in our early teens. Alzheimer’s disease. Sure, we had heard of it, but that was supposed to be an old person’s problem. Our grandfather was only in his 50s. Okay, so he forgot where his keys were or left something behind somewhere. Who hasn’t done that before?

The diagnosis didn’t ring true for me for quite some time. He seemed like the same loveable man I had always known. The grandfather that would rush home for lunch on the days he knew we were staying at their house. The same grandfather who had climbed around on the floor with us, let us play dress up with him, and played music for us. Surely this old person’s disease wasn’t going to affect him. He was still young. There was still time.

Our sweet grandmother tried to get us to read literature on Alzheimer’s, but being a typical teenager, I just didn’t want to know. I didn’t want to think about what may be coming. I didn’t want to think about how it might end, would end.

The Progression
The progression was slow at first. It was early onset, as they say. He would forget little things. For the longest time, I didn’t really notice much of a difference. And then it seemed to grow steadily worse. He wouldn’t remember us when we’d visit. I know many people have experienced this and I know I’m not alone when I say that it feels like a slap in the face the first time. This tall, strong, loving man was starting to drift away from us.

The family would visit for holidays, birthdays and random gatherings. We’d find our usual spots in the living room and glance at P-Pa, sitting in his usual chair. The chair he held me in when I was a baby. The chair he sat me in when I was barely a toddler with his headphones balanced on my ears. The chair where he shared his interest for CB radio. That chair had been there for years, but the man in the chair wasn’t the same. Every now and then he’d reminisce about something from his youth. Something I had never heard before, but then he would grow quiet and not recognize any of us in the room. Including my grandmother.

He was the love of her life. She had found a second chance with him and the love they had still continues to inspire me. He made her so happy. It was so hard to watch her suffer as he suffered. She continued to stand by him as the disease took him away from her. She served as his primary caregiver almost to the very end. She is so much stronger than her little five-foot frame would suggest. She is a fighter. They both are the reason I fight.

The End of Alzheimer’s Starts with All of Us
Through a leadership program in 2010, I had the opportunity to help start a young professionals group in the local Alzheimer’s Association Chapter. I now serve as co-chair for that group. This is my opportunity to remember my grandfather and to honor the strength and resiliency of my grandmother. This is my chance to make up for those teenage years when it was too frightening to learn about this disease. This is my chance to demonstrate to our society that this is not just an old person’s disease. This is my chance to show that that The End of Alzheimer’s Starts with Me.

Kelly Williams is being honored by the Alzheimer’s Association as an Alzheimer’s Hero during September, which is World Alzheimer’s Month.  Wanting to help others after losing her grandfather to the disease, Kelly helped launch YAAA! (Young Adults for Alzheimer’s Awareness) in her community. As YAAA! co-chair, she created the group’s first fundraiser, a black tie bowling event.

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