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!
*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.]
In my youth Germany was the poster child for racism, anti-Semitism and hate of all non-Aryan people. Race and religion weren’t handled ideally in the United States then, but our policies were based on very different principles. Germany has learned much since the 1940s. Are we forgetting our American ideals?
America has always been the land of opportunity for those who wanted to work hard. Although we’ve rarely happily welcomed large numbers of “different-than-us” immigrants (that’s a topic for a future column), newcomers built this nation.
And unless you are Native American, you are descended from immigrants. While we never became the “melting pot” that was hypothesized, we did become a “tasty stew.”
In the early 1930s, Germany’s economy was dismal and people sought escape from their constant problems. Along came a little known, not well-educated Austrian who promised Germans a return to all things good if they would only follow his every dictum. Then he would bring back the great German nation. Many people initially laughed at the small man with plastered hair and little mustache.
Within short time, few were smiling; most were weeping.
For some Germans defined as Aryans, life improved. But, the physical financial and personal attacks on those who did not fit into their leader’s ideal citizen began. Hitler’s loathing of people who were different from him, mostly Jews, but also homosexuals, outspoken Christian clergy, Roma (gypsies) and the disabled led to cruelty beyond belief.
Many German people were concerned and didn’t agree with Hitler, but the fervor of their countrymen left them little opportunity to protest. Perhaps the most famous words about this situation is attributed to a German Lutheran pastor, Martin Niemoller, who reportedly began as a Nazi supporter, but ended up in a concentration camp.
There are a variety of similar statements attributed to Niemoller, but a primary one states, “First they came for the communists, and I did not speak out - because I was not a communist; then they came for the socialists, and I did not speak out - because I was not a socialist; then they came for the trade unionists, and I did not speak out - because I was not a trade unionist; then they came for the Jews and I did not speak out - because I was not a Jew; then they came for me - and there was no one to speak out for me.” The meaning of this message should resonate here today.
Yes, we must be careful whom we let into our borders, but just because people come from selected countries or have non-mainstream American religions does not make them our enemy. In recent years, Americans born and raised here carried out some horrendous attacks at movies, schools, universities and work places.
Unless we want to remove the last five lines from Emma Lazarus’ New Colossus poem on the base of the Statue of Liberty, we need to find a humane way to deal with immigration, terrorism and fears of those who are different. The most famous lines of the 1883 poem read, “Give me your tired, your poor, your huddled masses yearning to breathe free. The wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me: I life up my lamp beside the golden door.”
Today’s Germany has immigration problems because they have been overly kind and accommodating for refugees and immigrants. Yet, they learned from their past that all people cannot simply be defined by their religions or backgrounds. America knows that. Why are we forgetting it?
[Diane W. Mufson is a retired psychologist. Her email is firstname.lastname@example.org. This article first appeared on the Opinion page in The Huntington, WV Herald-Dispatch]
Of the many, almost uncountable mistakes Donald Trump has made in his first week in office, perhaps the most foolish is his insistence on the “three to five million” fraudulent votes cast. Anyone who knows me is aware of my belief that The Embarrassment-in-Chief has never developed rational thinking skills, but this particular folly proves that there seems to be no one around him who has them either. Perhaps someone who has these skills should make some large charts to explain the following.
It should be noted that state election officials, along with members of congress, state there was no voter fraud anywhere near this level.
In an interview on CNN with Chris Cuomo, Gregg Phillips stated he would have a report in several months detailing the voting irregularities. This is after saying specifically that there were three million illegal votes cast. When pushed to provide the information supporting his claim, he said he didn’t have it. When asked how he could say this without completing his research, he appeared puzzled. He evidently didn’t understand the question. At the very least, Mr. Phillips has made a rather inflammatory statement based on preliminary research which has not been completed and won’t be completed for some months. Generally, folks who write computer programs are pretty good at linear thinking, but the evidence says something different in this case.
If this claim proves not to be true, Donald Trump is going to be embarrassed that he claimed there were voting irregularities. I suspect in this case, there will simply be…no report…kind of like his providing his tax returns.
If the claim proves to be true, as noted by Jim Wright in his blog “Stonekettle Station,” the election is clearly not valid since there is no way to prove for whom all those three million-plus people voted. Not all Afro-American or Hispanic voters voted for Hillary, after all, so there should be SOME “illegal” votes cast for Donald Trump. Additionally, all the other elections held in November are clearly NOT valid since there were so many invalid ballots. Therefore, all elections from November 2016 will need to be declared invalid and the elections will need to be held again.
I hope someone will start working on those charts, film them, and then show them to Donald on television. That seems to be the most persuasive way to convince him.
I tried to be a caring parent, providing a lot of positive messages to my kids while teaching them life lessons and tricks that would permit them to become successful adults who could participate in and contribute to society. More than once they would come home from school complaining about some rule which they considered to be inane, because it was a no-brainer as far as they were concerned.
I had to tell them that many children were not being taught basic rules of community behavior that would permit them to fit in without negative consequence, so in large groups and organizations, like schools and like mother jobs in their future, there were going to be rules that might be nit-picky at best and downright rigid at worst. I also told my kids that if they didn’t know the rules in any given place just to follow my rules and they should be in good standing.
I never beat my kids. I did not like getting spanked or yelled at as a child, and I strongly disagree with any adult who feels those are the only ways to get a child to pay attention. I think if you start early enough, the teaching can be done better. The problem as I see it, is that many people do not nip a problem when it is small, and so, react in a larger way when it becomes greatly annoying. And being bigger and stronger only lasts so long with children.
So, in many families there is a system of uncertainty for the kids. They do what they want and then boom!–they are punished. For many of those people, as they grow up, they like knowing the rules. They feel safer when there are rules. They like having someone give them strict boundaries for behavior that will keep them out of trouble.
Until they don’t like it. And then they have no way to work through it. They have been taught to conform, to swallow any impulse to think differently. So, if annoyed by the power above them, they tend to strike at those they consider weaker. And so the cycle is perpetuated.
Right now we have a large segment of the U.S. population who seem to like the idea of a strong leader who makes pronouncements instead of working with others. In fact, many people are confused with the marches and protests that have been happening since they perceive no threat to their own small world. Why is it some of us perceive a threat when others are unconcerned? It can not simply be that we are smarter but perhaps we read more and remember history better than others. Perhaps that reading and learning hasw helped us to recognize the clues of starting problems before they get really large.
We are also seeing many other nations leaning towards a conservative government; in fact, it is interesting to note that the one liberal government that exists in a major European nation right now is Germany. Perhaps their own experience with a fascist dictator taught them all they need to know.
Let’s hope that the lesson America is about to learn does not have a similar high a price to pay.
[Beth Rankin is an entrepreneur par excellence, mother, wife (to Graham Rankin, a retired professor), blogger, and writer who lives in McMinnville, Oregon. She is the CEO of her own successful company which processes, preserves, and moves foods from farm to table. Beth’s own blog is at: www.goingplaceslivinglife.wordpress.com. Please go to Beth’s website and subscribe for many first-hand articles that we do not re-print. We are very grateful to Beth for allowing us to expose our readership to her efforts.]
They came. The call went out and…they came. In Washington, yes. In Los Angeles, Boston, Chicago. In Denver, and in Austin. But also in Bethel, Alaska where the high temperature for the day was -21. They came in conservative strongholds like Lubbock, Texas and Colorado Springs. They marched in Oxford, Mississippi, and in Oklahoma City. They marched in London and Paris and Madrid and flooded the streets of Amsterdam. They marched on the tiny Isle of Eigg in the Scottish Hebrides, and by their thousands in Nairobi. They brought their children. They got up in retirement homes where even 101-year-old feet showed they could still march.
They invented chants. And songs. They created signs that were clever, arch, hilarious, artistic, defiant, angry, touching, and heartbreaking. They wore T-shirts in sunshine and coats in the driving snow. They wore those, glorious glorious hats.
It was beautiful. So beautiful that it sometimes hurt to watch–in the best possible way.
After a day that seemed so dark, where it felt like hope had been crushed and the light had been dimmed, when optimism seemed lost and justice diminished, they showed that there is still a word that means all those things, all at once, and much, much more.
There have been large protest events in the past, such as a 1982 anti-nuclear protest in Central Park that drew a crowd of a million. There have also been protests spread across multiple cities, for example, protests over the War in Iraq that put 10 million people on the streets of cities around the world on a weekend in 2003.
The Women’s March has surpassed many famous events of the past, taking its place as one of the greatest protests in history. While media predictions may have seemed generous at the time….
On January 21,  approximately 200,000 people will convene in Washington, DC to stand up for gender equality after Donald Trump’s inauguration.
The actual event has turned out to be many times larger. The crowd in Washington, DC exceeded 500,000 by 9 AM, and the crowd in other cities may actually be larger.
[Editor’s Note: The crowd exceeded all expectations in every place. And, quite frankly, the size of the crowds grew so large in the major cities that they were, for all intents and purposes, immeasurable. For our locals, the crowd that gathered in Charleston, West Virginia to march around the capitol was 2,800 by count.]