If It Could Happen To Robin Williams…

This post originally appeared in the Alzheimer's Reading Room. - Trish It was 1978. I had just settled down to catch an episode of “Happy Days,” a funny, sweet TV show – a good escape. In the episode, The Fonz (Henry Winkler) heard a knock at the Cunningham’s front door. Outside stood Mork from Ork – Robin Williams in his first role. Mork was an endless barrage of jokes, pratfalls, catch-‘em-if-you-can rejoinders. You could get whiplash trying to keep up. He left me breathless just trying. My husband, who was working late that night, called just after the program ended

Happy Thanksgiving

On Thanksgiving, George and I will enjoy a meal with family and share what we're thankful for this year. But I want to get one in before we dig into the turkey and mashed potatoes. So thank you ... thank you for helping us grow UsAgainstAlzheimer's into a powerful machine to fight this senseless, cruel disease . We started from scratch, with little more than vision and a heart still reeling from the loss of my mom. Now, we've built six distinct networks and two national and international coalitions. We reach tens of millions globally, and we actually have a

Natural Causes?

Ben Bradlee, the legendary editor of The Washington Post who was best known for exposing "Watergate," died last week. According to the Washington Post and the New York Times, Bradlee died of "natural causes." Yet it was widely known and reported CNN, Sept. 29, and numerous other outlets] that he suffered from Alzheimer's for many years. Alzheimer's is a disease, a cruel and debilitating disease, and it is no more a 'natural cause' of death than cancer or heart disease. With characteristic courage, Ben Bradlee and his wife Sally Quinn, brought Alzheimer's out of the shadows. I believe newspapers need

3 Steps to Fight Alzheimer's

(Adapted from remarks made at a hearing sponsored by Congressman Steve Israel, D-NY) First, the federal government must re-prioritize its spending to make a stronger commitment to fund Alzheimer’s research. Four years ago, Congress declared War on Alzheimer’s by enacting the National Alzheimer’s Project Act (NAPA), which in turn required our nation to develop a national plan to attack this disease. This plan established as Goal One preventing and treating Alzheimer’s by 2025. But, unfortunately, Congress never authorized any additional money for Alzheimer’s research when it created NAPA. Since we declared War on HIV/AIDS about 25 years ago, our federal

Our Mothers' Long Goodbye

By Trish Vradenburg and Congresswoman Annie Kuster On this Mother's Day, we honor our mothers, who suffered from a deadly and currently untreatable disease: Alzheimer's. Trish Vradenburg (TV): My Mother was larger than life. She embraced life with style and grace and passion. She could capture a room just by entering it. Congresswoman Annie Kuster (AK): My Mother was fiercely passionate, and she taught me to care about the issues that really matter -- protecting our environment, looking out for those who need help and treating everyone equally. As a New Hampshire Senator, she was a pioneer for women in

Caring for a Family Member with Alzheimer’s Disease

Editor's note, this post originally appeared on the blog A R E T E In Memory of Our Sister, Mary Ann Morgan, R.N., B.S.N., M.S.N. Our mother, Margaret Lyon Morgan, died of a terrible disease, which some have described as “death in slow motion.” It’s called Alzheimer’s disease and dementia. Those who work with dying people realize it is not death they fear but a painful dying. And one of the longest and most difficult endings is for those with Alzheimer’s–and those who witness this process suffer with them, often silently. Our mother suffered with dementia, probably Alzheimer’s before it

Ripple Effect

My books are like a ripple effect, taking me downstream to situations unknown. Recently, our book, “No Act of Love Is Ever Wasted: The Spirituality of Caring for Someone with Dementia” was read and used by Lynda Everman. Because of the book, Lynda contacted me about a new advocacy group open to all faith backgrounds, ClergyAgainstAlzheimer's, which I joined as a founder. 46 years ago our mother died from Parkinson’s dementia with little support, except from her family. Three years ago our sister, Patricia, died from vascular dementia. For many years I was a nursing home chaplain, offering care to

Still Kicking at 88

If Alzheimer's were cured, people would simply age, rather than disappear into the unforgiving vortex of the disease. There are many octogenarians and nonagenarians who age as nature meant them to. Take for example: Warren Buffet, 83, who is called the "Sage of Omaha" and is noted for his adherence to the value investing philosophy and for his personal frugality -- probably because he recently was demoted to the third richest person in the world. Or Betty White, 90, the vibrant comedian known for her expert timing and for never going down on a line. Or Fidel Castro, 88, who

What Seth Rogen Can Teach Silicon Valley About Alzheimer's

For Alzheimer's, the old Dickensian paradox holds: we are in the best of times and the worst. Times are bad because there is no effective way to treat or prevent Alzheimer's, and global rates of the disease are going to double by 2030 and reach 135 million by mid-century. Families are financially and emotionally devastated by the disease, and national budgets are becoming overwhelmed by the disease's extraordinary costs. And even though Alzheimer's is a greater burden than cancer, diabetes, and other age-related non-communicable diseases, only rarely does Alzheimer's receive adequate attention. But times are also good. The fight against

Living with EOAD

Editor’s note: This story is taken from a speech given recently by Steve at a church in North Carolina Hello, my name is Steve Ponath I am honored to of been asked to come before you today and speak about a disease that has affected me personally. I'd like you to understand that in doing so, I step out of my comfort zone and walk in faith that what I am about to say is Christ centered, and not Steve centered. I now have to read what I want to say rather than just express it freely, this disease takes