Tag Archives: research

The Story of Catherine Walker

Dear Family and Friends,

Today’s Courier-Journal has the story of Catherine Walker, mother of my dear friend, Cathy Nagy. It’s both a wonderful story of a family working together and loving together and doing good together, and the terrible story of Alzheimer’s. (http://www.courier-journal.com/article/20120906/PRIME03/309060017/Louisville-sisters-walk-raise-money-for-Alzheimer-s-to-honor-mom-and-aunt?odyssey=tab|topnews|text|Features)

The relationship of Catherine Walker and her husband, Lou, remainds me of my in-laws, Natalie and Dave (“Mom” and “Dad”).  After Mom was diagnosed with Alzheimer’s, all Dad wanted was to be with her. It took us quite a while, but we did find a lovely home where they could share a room and be together.

Mom and Dad are together again now, having left this earth and their children behind to follow their example.  Like Cathy Nagy and her sister Susan Oswald, we are working hard to change the future for our own children.

This Saturday is the 2012 Louisville Walk to End Alzheimer’s at Waterfront Park.  We will all be there. Please join us.

Sincerely,

Bonnie

Don’t Ever Think That Just Two People Can’t Make a Diffference

Dear Family and Friends,

Ten years ago, Cathy Nagy and Susan Oswald held the first Backyard Baseball event to raise funds for Alzheimer’s in honor of their mother.   It was literally a “backyard” baseball tournament, held in the empty lot behind Cathy’s backyard.  They signed up friends from the neighborhood and their children’s schools and raised $400 for their Walk to End Alzheimer’s team. That’s better than a lot of garage sales, and a whole lot more fun for the kids!

The event grew over time to include food, raffle items and a silent auction.  Every year, in the weeks before the event, Cathy’s living room would look like a warehouse facility for an “odds and ends” variety store. A few sponsors and donors became regulars they could count on year after year.  The kids grew into teenagers and looked forward every year to the event.  The neighbors, instead of complaining about the growing crowds and cars, joined in.

As they approached their seventh year, Cathy and Susan decided it would be their last, and they pulled out all the stops and set a goal: a total of $100,000 in funds raised for the Alzheimer’s Association over eight years.  Their loyal friends, colleagues and family members stepped up, as did sponsors, and in 2009, they reached their goal.  Over seven years, Cathy and Susan had raised $100,000 for the Alzheimer’s Association.

In 2010, Becky and Brent Beanblossom stepped up.  The event had too much name recognition, too many loyal participants and too much sponsor support to let it fade away.  Longtime supporters of the Alzheimer’s Association, Becky and Brent held a successful 9th Annual Backyard Baseball event at a new location, a local church, to accommodate the ever-growing crowd. Of course, Cathy and Susan continued to held tremendously, as they do today.

In the fall of 2010, I held  the last fundraising event for my younger daughter’s soccer team.  My specialty had been corn hole tournaments, an idea germinated by her Ballard High School soccer coach, Brooke Burd. I found that these were fun, family-friendly events that brought together multiple generations to enjoy an evening together for a good cause.

That’s why I agreed to begin chairing Backyard Baseball in 2011.  I relied a great deal on Cathy, Susan, Becky and their husbands, of course, and the name recognition that drew their dozens and dozens of friends, family and other supporters each year.

We are working to grow Backyard Baseball & Bar B Q into more of a community event. We’ve added live music — this year it was Muench (www.muenchband.com) — and scrumptious bar b q from Mark’s Feed Store.  The sponsors who have stayed with us over the years — Home Instead Senior Care, Byerly Ford/Nissan, First Capital Bank of Kentucky, Norton Brownsboro Hospital, YUM! Brands, LPL Financial, The Benefits Firm and WHAS AM 840 – have been joined by Guthrie/Mayes Public Relations, Christian Care Communities, WAMZ  97.5 FM, Q Country 103.1 FM, ESPN 680 AM, and Dr. Gary Reasor. Our generous donors continue to step up every year with wonderful gift baskets, gift cards, sports team logo wear and hand crafted items.

To date, Backyard Baseball & Bar B Q has raised more than $130,000 for Alzheimer’s (the numbers are still coming in for the 2012 event)!  This money funds workshops and services for people affected by Alzheimer’s in Kentucky as well as research to find a cure.

$130,000!  Don’t ever think that just two people can’t make a difference.

Sincerely,

Bonnie

Still a Long Way from a Cure

Dear Family and Friends,

Shivani Nandi , research manager at the Department of Neurology at the University of Louisville, recently returned from the 2012 Alzheimer’s Disease International  (ADI) Conference in London. She shared some thoughts – some stark, some poignant – with the members of the 2012 Louisville Walk to End Alzheimer’s committee, and I’d like to pass a few of these along.  To me, Shivani’s observations speak loudly and clearly to the continued and growing need for the Walk to End Alzheimer’s, as the disease affects more and more people.  We need a huge influx of funds for more research toward both treatments and a cure, and we also need national plan to ensure a coordinated approach to Alzheimer’s.

According to Shivani:

  • “It’s only too clear that there is not likely to be any end to this disease in the near future. There is not even an effective disease-modifying drug anywhere on the horizon to treat it, let alone cure it. So it’s going to be long process and we can only hope and pray that there will indeed be that one blockbuster drug that will put an end to this mind-destroying disease. “
  • “There were a lot of very exciting presentations on effective psychosocial interventions that involved modifications of the environment and other techniques to vastly improve the quality of life for persons with dementia.”
  • “I was very impressed that there was a parallel session where all the speakers were people living with dementia. See page 23 on this link  for a parallel session called “Living with Dementia: This is Me”. http://www.adi2012.org/Libraries/Documents/ADI_2012_Full_Scientific_Programme_v1_8.sflb.ashx
  • “It was truly an eye opening and yet and humbling experience to hear them speak; and what powerful emotions they had to share. A couple of the speakers already lived in care homes but for one of them her lifeline to the rest of the world was via her computer. Also, one of them was a former physician who lives in a care home but who spoke most wonderfully and without reading from any notes. I was particularly touched by an expression used by one of these speakers who said, ‘It’s not only our caregivers who give. We also have some capacity left to give back to the world.’”

Shivani also noted that two of the invited speakers have been diagnosed with dementia, Sir Terry Pratchett, an acclaimed author, and Helga Rohra, a translator in five languages, who shared their experiences with a packed international audience made up of medical professionals, researchers, caregivers, media, healthcare professionals and the general public. Shivani said she hopes more people with Alzheimer’s come forward to “share their lives and enrich our lives with their stories and also get media attention.” Here is a link to the list of speakers: http://www.adi2012.org/en/Scientific_programme/invited_speakers_copy1.asp

I am grateful to Shivani for sharing her thoughts.  Now, what are your thoughts?

Sincerely, Bonnie

One in Seven with Alzheimer’s Lives Alone

Kentucky Alzheimer’s Statistics 2012

Dear Family & Friends,

The Alzheimer’s Association released its annual “Facts and Figures” report today, and what I found most frightening is the fact that one in seven people with Alzheimer’s Disease lives alone. That means approximately 11,430  Kentuckians have a fatal disease with symptoms that make them more vulnerable to all kinds of dangers, and no one is right there by their side to be sure they don’t wander, or fall, or forget to eat or take their medicine.

Even scarier, up to half of these Alzheimer’s patients have no one who is identified as their caregiver. No one is regularly checking in to make sure they’re eating, taking showers, answering the door only for people they know. If someone with Alzheimer’s who is living alone takes a bad fall, and no one reguarly checks up on them … oh, I cannot imagine.  It could be days or even longer before someone comes to help.

Have you ever felt really alone?  My husband travelled on an extended business trip recently and there were several nights that I was home by myself and just plain lonesome. I am embarrassed to tell you how many times I re-watched the Twilight movies. But I was always safe, warm, and had everything I needed to take care of myself and entertain myself. If I had fallen, I knew there were people who checked in with me daily and that they’d figure out very quickly that something was wrong and head over to check on me.

But what if your brain wasn’t functioning correctly? What if something in your body hurt, but you couldn’t figure out why? What if you walked out your  door and got lost? What if the food in your home had gone bad, but you didn’t know? And what if no one paid attention?

The 2012 Facts & Figures report is another, very stark, reminder that we must find a cure for Alzheimer’s, and some treatment that slows it down. That’s what the 2012 Louisville Walk to End Alzheimer’s is all about – funding the research to find a cure, and providing resources to help those with the disease and their families.

But in the meantime, and at all times, we have to remember to check on our neighbors, friends and loved ones. Especially those living alone.  I’m going to make a more concerted effort to do that.

And maybe I’ll invite some of my neighbors to walk with me on Sept. 8.  Won’t you visit your neighbors and friends living alone and ask them to join you at the Walk to End Alzheimer’s as well?   Please visit www.alz.org/kyin and sign up today.

Thank you! Bonnie

Aging Care Speech I Found Fascinating

Dear Family & Friends,

Louisville is blessed with some incredibly smart, generous people who have insight, talent and a willingness to work relentlessly to support our community and its people.  I recently came across the remarks of John Reinhart President & CEO of the International Center for Long Term Care Innovation (“InnovateLTC”), the nation’s first incubator for innovative aging care products and services.

Louisville happens to be the world leader in aging care company headquarters, and that is leading to some fascinating networking and collaboration regarding how and where the world’s growing aging population will live and work in the coming decades. The speech you’ll find at the link below offers some interesting insight on that topic.

But what I also found interesting and touching about the speech are his reflections on how “aging care” is really a lifelong wellness proposition, and that different generations have different perspectives on what it means to age well. I welcome your thoughts on his remarks.

http://innovateltc.com/2011/12/09/when-the-quest-for-aging-innovation-becomes-personal/

Sincerely, Bonnie

Thank You Note from a Researcher

Researcher Dean Hartley, PhD, of Rush University Medical Center in Chicago, says National Institutes of Health funding for Alzheimer’s research is declining, so he is grateful for a research grant from the Alzheimer’s Association. Hartley’s research focuses on how the disease starts and spreads through the brain. Read Dr. Hartley’s full note here: http://act.alz.org/site/PageNavigator/FY12_Highlighting_a_researcher_page.html