Apr 242013
 

Alzheimer's Advocate Bob Marino Alzheimer’s disease has been the greatest heartbreak of my life. 

I lost my mother to Alzheimer’s disease. And then, my father.

I tell their story, because they can’t.  I tell their story in hopes that future generations will not have the same story to tell.

Today, I am surrounded by fellow advocates at the 25th annual Alzheimer’s Association Advocacy Forum – my thirteenth. We are the voice of many, with one message:  The time to act is now! Alzheimer’s is a health crisis that will only become greater.

I hear our collective voice, and I am struck by how strong it has become.  At my first Forum in 2001, I remember David Hyde-Pierce introducing Maureen Reagan through speakerphone because her own illness precluded her attendance in-person.  I can still hear her stirring call-to-action, and our resolve to take up that challenge.

Since then, we’ve had real victories – from the establishment of Medicare Part D, to the elimination of the Social Security Disability Insurance waiting-period for early-onset bob in purple tieAlzheimer’s, to the landmark passage of the National Alzheimer’s Project Act (NAPA) in December 2010. My dad passed from Alzheimer’s-related complications earlier that same year, making NAPA an especially precious gift to his memory.

We have momentum, but there is still a long way to go.  Today, one in three seniors dies with Alzheimer’s or another dementia, and more than 5 million Americans are living with the disease.  These are numbers that must be changed.

It’s incredibly hard when the disease claims one of our advocates or their loved ones. But we keep at it because this is a battle we must win. We come back, year after year – and will continue to for as long as it takes. We come back, because we must—for a better tomorrow and a world without Alzheimer’s.

It’s very powerful to hear the stories of people from all walks of life of how they are affected by Alzheimer’s. We inspire each other, especially during the challenging times. The Advocacy Forum provides us an energy and hope.

Thirteen suddenly feels like a lucky number…

About the author: Bob Marino is an Alzheimer’s Ambassador working to make Alzheimer’s a state and federal priority.  He serves as co-chair of the Pennsylvania Public Policy Coalition for the Alzheimer’s Association, sits on the boards of the Delaware Valley Chapter and the Alzheimer’s Impact Movement, and was the 2006 recipient of the Association’s Maureen Reagan Outstanding Advocate Award. 

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  2 Responses to “Hope and Resolve on Capitol Hill: The Voice of an Alzheimer’s Advocate”

  1. I too pray for more awareness to the disease of Alzheimer's Dementia. I thank all people that are willing to step up and tell their story, share the heartbreak of this disease. I have been caring for my Mother for the past five plus years, and her disease is progressing, it's very difficult.
    My concern is not only for the patient with Alzheimer's but also for the family members that take on the caregiving for their loved one. It's imperative that we recognize the contribution that is being made by millions of family members, that provide hands on care on a daily basis, and or over see the care of their loved one. Resources are very limited in our current financial crisis, and we are often searching for help, resources, respite, that is simply not available to far too many. This is something that needs to change.

  2. the longest day seems like every day…i have been caring for my mom.i get angry at myself for getting impatient with her,for a bright laughing woman full of life to a shell of what was.i am good at repeating an answer 20 or 30 times,then i feel myself slipping and getting upset with her.i go to the bathroom for a few minutes..i dread coming back out.i know its not her fault.but having the same conversation everyday,every 5 minutes,it wears me down.i am her only caregiver.my marriage is falling apart because i have nothing left for him at the end of the day.i have panic attacks and have developed ulcers from the stress.any advice out there.i pray and pray that this awful disease will end.probably not for me,but i hope my children will never see their mother like this

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