Sep 212012
 

 A Note from Michael: I would love to thank each one of you for the wonderful comments I received from my article.  As an advocate, it can be challenging to measure the ways in which my story is received by others. Seeing all of this positive feedback has given me a boost to continue writing and raising awareness for the millions of American’s affected by Alzheimer’s disease.

Since receiving my diagnosis, I have had the opportunity to speak with many individuals living with Alzheimer’s and other dementia.  I hope that my personal story has given others a new perspective on how to live with this disease, and connect with others.  Don’t give up! It takes time and patience to find the right connections and the best ways to cope with some of the challenges you may experience; however, the benefits are priceless. I am grateful for the opportunity to connect with so many of you through this blog. The acknowledgements and comments I received have inspired me to continue advocating as a person living with Alzheimer’s. Please join me and become an Alzheimer’s advocate. Join the National Alzheimer’s Advocate Network and make your voice heard. Thank you again.

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Alzheimer’s disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact is that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer’s and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer’s advocate and a spokesperson for the Alzheimer’s Association (US) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don’t want them to feel sorry for me or pity me, I just want to be understood. So many people say you do not seem to have Alzheimer’s, and that frustrates me. Let me tell you what it’s like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer’s and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see them clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don’t understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don’t put them away, because I don’t know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say ‘if I can do anything just let me know.’ If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that  I am doing all these things wrong and have no way to control or stop it, and it’s only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I have lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make things worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage.  That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer’s is, but they don’t. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer’s Plan. I did all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I am now a volunteer for the national Alzheimer’s Association Early-Stage Advisory Group.  If there is something I want you to walk away with it’s that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it’s just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer’s Association that can help you. The Alzheimer’s Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer’s Month. I wear a purple Alzheimer’s bracelet every day.  And for those living with Alzheimer’s, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of.  I, and your loved ones, are counting on all of you.

Learn More:

About the Blog Author: Michael Ellenbogen is living with Alzheimer’s and trying to make a difference. Michael is also a member the Alzheimer’s Association 2012 National Early-Stage Advisory Group.

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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