MARIA MARTINI DENEAU
Purple has become more than just my favorite color. It is the color of obsession for me. It stirs raw emotion and almost a fight or flight mentality. Purple is the color of Alzheimer’s Advocacy Warriors.
I’m one of those warriors who treks to Washington D.C. a few times a year to voice my personal story and to advocate for the eventual cure plan for Alzheimer’s with the help of The National Institute of Health (NIH) and Congress. Now more than ever, the fight needs to be relentless as we learn of yet another clinical trial that has been halted due to poor outcomes. The picture is bleak. Two major pharmaceutical companies have had failed clinical trials this past year without a gaining a shred of new knowledge. In fact, the theory of Beta Amyloid plaques and Tangles present in the brain of people who have died of this insidious disease is on the chopping block for a cause. These are likely remnants of what is left behind in the ever-shrinking brain of an Alzheimer’s patient. This is the ONLY disease with NO CURE, NO SLOWDOWN and a sky-rocketing trajectory upwards!
I have become a tireless advocate for Alzheimer’s research funds and awareness to help combat this disease that robs of life, as they know it, so many people and their families. When something affects you personally, your outlook becomes very clear and very raw. It changed my life and the life of my entire family–forever. When you watch someone fade away slowly over a 12-year period, only to see them as a corpse of their former self, it hits you at your core. Especially, when it’s your beautiful mom.
The truth about this disease from a personal view: This disease almost destroyed my life, but it also made me painfully aware of how much more attention that we as a nation need to be giving it. Again, there isn’t ANYTHING currently that can be done for someone afflicted with it. NOTHING. No cure, no medication slowdown, no nothing. NADA! Isn’t that crazy in this age of new-age technology, healthcare and pharmaceuticals? Literally, every other major disease process has medication assistance, cures and healthcare protocols. Not Alzheimer’s–it WILL BANKRUPT our already corroding, over-extended country in the next decade if we do not get a handle of it at the very least. It makes me wonder. My thoughts get cynical and jaded, wondering if there is something going on behind the scenes, if you will. I digress. I obsess.
Some people might call my advocating a mission, a purpose or a calling, but I have come to realize that it was just the next “right” thing to do. I have been criticized for my obsession with advocating; I have even damaged my livelihood and my personal relationships with this obsession, but I have come to realize that this means that I AM doing the “right” thing! Using this obsession through my voice and my energy, especially working in senior healthcare, is definitely the next “right” thing for me to do.
TRUTH ABOUT THIS DISEASE: The statistics are sobering (*AlzAssoc, 2016).
*More than 5 million Americans are living with Alzheimer’s disease. Of these 5 million, most are aged 65 and older, but approximately 200,000 are under age 65. They have early-onset Alzheimer’s. My friend Tyler, a young advocate that I met in Washington, is a 23-year-old college student. He lost his mom last December at the age of 48 from Early Onset Alzheimer’s Disease. He has also lost his grandparents and his aunt and uncle to Alzheimer’s. He has been living with this disease since he was six-years-old. When he testifies, there isn’t a dry eye in the room. He is now in a clinical trial in which he will find out this summer if he will eventually contract Alzheimer’s. Did I mention that he is only 23!!! He has already seen and experienced this disease in many ways most of us cannot even fathom.
*Alzheimer’s is the sixth leading cause of death in the United States.
*1 in 3 seniors die with Alzheimer’s or another Dementia. *In 2015, more than 15-million caregivers provided an estimated 18.1 billion hours of unpaid care. Alzheimer’s costs caregivers more than their time. Family caregivers spend more than $5,000 a year caring for someone with Alzheimer’s. For some families, this means missing a vacation, but for others, it may mean going hungry.
*WOMEN are the epicenter of the Alzheimer’s crisis. Almost two-thirds of American senior living with Alzheimer’s disease are women…no one knows why. Women are also the main caregivers for others with Alzheimer’s disease.
*In 2016, Alzheimer’s and other dementias cost the nation approximately $236 billion!
ARE WE LOSING THE BATTLE?
*Alzheimer’s is the only disease among the top ten causes of death in America that cannot be prevented, cured or even slowed. Think about that one! The Walk to End Alzheimer’s is the only Fundraising “Walk” with absolutely NO SURVIVORS participating.
These are actual statistics that we use in Washington to advocate with on Capitol Hill and in front of Congress when testifying…Powerful, right? Here are some of the MOST powerful verbal advocating tools:
“Congressman XX–we need your help! Please endorse the new Hope for Alzheimer’s Act legislation so that people like my mom are cared for properly. My mom had her own “poop” under her fingernails because she forgot what toilet paper was and wouldn’t let anyone in the bathroom with her. My mom hit, slapped and punched my dad on more than a few occasions because she forgot ‘who this strange man was in her house, and her husband would not like it.’ My mom fell over the open dishwasher door onto her face because she had lost all spatial distance ability. My poor dad had no idea what to do with her and how serious the situation was because he was not aware of any resources available to him. IT’S NOT THE NOTEBOOK, CONGRESSMAN. My dad hid things from his own children because of the stigma. The STIGMA of this insidious disease is overwhelming to the everyday person. It is not a mental illness, Congressman, but a disease of the brain…the brain is actually DYING while the person is still living. This IS A DISEASE and this disease will bankrupt our country very soon if we don’t get your support.”
THE “POOP” USUALLY GETS THEM.
Congress and their staff are inundated by papers and all sorts of disease advocacy, so it’s my job to be a real as possible to shine the light on this disease and what it does in comparison to other diseases. I’ve seen their jaws drop and conversations shift from listening politely, to actually identifying with our advocacy. People still talk about this disease and how it has affected them personally from a place of shame and embarrassment. THIS is what needs to stop and, finally, that is changing through our advocacy.
I will tell you that since I have been advocating with others from around the country these last three years, we have had a historic $936 million approved for Alzheimer’s specific disease research through Congress to the NIH that was implemented in FY 2016. It’s working, and with the help of philanthropic organizations from around the country, we are bringing more awareness to what lies ahead if we don’t start paying more attention to Alzheimer’s disease. We are still hundreds of millions below what is currently being spent on cancer and heart disease research.
What does the future hold for our healthcare system and disease advocacy in our current political state? I cringe at the thought. We are in a very dangerous time for disease advocacy and healthcare futures for our citizens. Medicare hangs in the balance of our elected officials in Washington. I am not encouraged by what I am seeing on a daily basis coming out of our nation’s capital. WE MUST CONTINUE TO FIGHT! We must keep raising our voices to our political figures, to our healthcare providers and to our families and friends. We must resist at every turn! We cannot lose ground on what we have accomplish thus far.
Is advocating for everyone? No, probably not. It’s raw and usually is most effective when borne on, and from, personal experiences. It IS my comfort zone, however. It IS something that I can do to help slow the trajectory of this disease. It is personal and professional for me. Most importantly, it is the next “right” thing to do to make a difference. I will continue with my obsession.
TO LEARN MORE ABOUT ADVOCATING FOR ALZHEIMER’S, PLEASE CONTACT: WWW.ALZ.ORG
[Maria Martini Deneau lives in Portage, Michigan, where she is a professional home healthcare specialist and a tireless crusader for those who suffer with Alzheimer’s and Dementia. Maria also serves as a determined, indefatigable volunteer and advocate serving as an ambassador for the Alzheimer’s Association.]