Tag Archives: Bonnie Hackbarth

Barbara and Al Webb’s continuing story

Posted on May 10, 2013 | Leave a comment

Friends and Family,

It’s time to start this blog back up as we approach the 2013 Walk to End Alzheimer’s on Sept. 7.  It’s also time for you to sign up your teams at http://act.alz.org/site/TR/Walk/KY-GreaterKentuckyandSouthernIndiana?fr_id=3390&pg=entry, so you can begin your fundraising.

Meanwhile, here is a post from our dear friend, Barbara Webb with an update on her husband, Al:

 

I am happy to report that Al’s health has not deteriorated significantly, but there are enough changes that make daily life quite frustrating for both him and me.  Can you imagine going to the basement refrigerator only to get there and have to go back upstairs and ask what you were supposed to be getting? How would you react when there is a simple task you have completed many times in your life but now you can no longer figure out the sequence of directions nor even be able to understand the directions?  Would it scare you when you can no longer totally follow a television show or even a conversation among friends?  Welcome to Al’s world and the world of all Alzheimer’s patients.  I can’t speak for what goes through his mind, but I do know what goes through mine – frustration with my inability to help him more, sadness at what we have lost, fear of the unknown and future.  I try to remain calm and patient and remember above all else, he can’t help himself-it’s the disease.  But it isn’t easy for me, either, just as it isn’t easy for any caregiver. To see my strong, educated husband say to me that he is stupid tears my heart out.  He isn’t stupid; this disease is slowly shrinking his brain and not allowing him to think and remember as he used to.  When he asks me the same question over and over again and I want to scream, I have to take that deep breath and tell him one more time the answer to his question. I try to remain calm and loving because if I have learned one thing it is that it doesn’t help to raise my voice and you can’t argue with an Alzheimer’s patient.  It only exacerbates the situation and leads to more frustration.  Notice I used the word “try” to remain calm, but I haven’t totally accomplished that feat.  (Being a Type A doesn’t help, either.) And I know it is me that needs to do the changing because unfortunately, Al is not able to do that anymore.

 

I have read over and over again how caregivers need to care for themselves, but find it so difficult to do.  It seems there are very few moments for myself and when there are sometimes I am too tired to do anything but collapse in my easy chair.  But our therapist has helped me realize this needs to be a priority in my life, so I am trying to follow through on this.  I love massages so I have made a commitment to get a massage once a month.  (I signed a yearly contract so I would have to follow through!) I am also making a more concerted effort to say no when outside obligations are asked of me. (I haven’t fully accomplished that one.)  And I am being more forthcoming in asking help from family and friends.  I still try to make time for a mini “Shabbat” (a joyful time of rest) but that doesn’t happen as regularly as I would like. 

 

One thing I hope all caregivers take advantage of are the many workshops, programs, articles, books that are available to us.  If you are ever able to see Teepa Snow speak, don’t walk but run to her.  She is a very knowledgeable professional who speaks with much humor and love. (That is where I learned that the brain actually shrinks during the progression of Alzheimer’s, not just plaque buildup.)  I highly recommend the Best Friends Approach to dealing with Alzheimer’s.  This approach helps to enhance the lives of those living with Alzheimer’s and their caregivers’ lives as well.  The hope is that we will be able to turn from frustration and despair to joy and hope.  ”A Dignified LIfe-The Best Friends Approach to Alzheimer’s Care” by Virginia Bell and David Troxel, is a wonderful book that has helped me immensely in trying to continue to allow Al to lead a life of dignity and hope while keeping our relationship in tact as much as possible. Alzheimer’s Association has many enlightening programs for whatever stage your loved one is in.  You can get on their mailing list or email list and learn about all of the programs that are available in your area.  (www.alz.org)

 

Although we face the fact that we may need to place Al in a facility someday if I can no longer care for him, we are both committed to keeping him at home as long as possible.   As I have said many times, Al is the best thing that has ever happened to me and I wouldn’t change my life with him for anything in the world.  I daily live by the scripture verse Philippians 4:13 – I can do all things through Christ who strengthens me.  And a little humor never hurts – It is so difficult to remember when you are up to your ears in alligators that your initial task was to drain the swamp. Oh my goodness, welcome to the world of Alzheimer’s and caregiving!!! 

 

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Posted in Caregiver, Living with Alzheimer's, personal stories, Walk to End Alzheimer's

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“Shaboomaha” – A made-up word to make up for loss of words

Posted on September 21, 2012 | Leave a comment

Dear Family and Friends,

Today is World Alzheimer’s Day.  In many ways, it’s just another day in the fight against Alzheimer’s, but in other ways, it’s a chance to focus on the little things about Alzheimer’s that make it so difficult. Fortunately, there is often a way to find joy along with the sadness and frustration of this disease.

Below, Barbara Webb graciously shares another recent experience as she and Al continue to face their future with Al’s Alzheimer’s disease.  I love the way they handle the questions and frustrations that the diagnosis, and that living with Alzheimer’s, has raised in their lives.  She is so honest, and yet so very graceful.  I hope reading this brings you a smile and a bit of hope, and that it is also a little reminder about how important support groups can be to helping you face life with Alzheimer’s.

We know it is normal for Al to forget words when trying to express himself. Sometimes it takes awhile for me to fill in the blanks, but I usually am able to do that. 

I have recently become concerned because, more and more, I am having trouble coming up with a particular word I am trying to think of when speaking.  Al is not usually able to help me, so I tend to get quite upset with myself. 

I guess in a small way, this is an insight into what those with Alzheimer’s go through all the time.  Of course it worries me that there could be two of us in the same house with this disease, but friends, family and those in my support groups all say it is the stress I am under that causes my mind to go blank and leaves me unable to think of a word. 

I am going with that (otherwise, I will probably go nuts!!)  But I have to admit that I don’t handle it very well when this happens.  I get quite frustrated and angry. And that only makes it more difficult to think straight (another insight into what our loved ones deal with on a daily basis.) 

Out of the blue one day when I was trying to come up with a word, “Shaboomaha” came out of my mouth.  I have no idea where it came from, but Al and I looked at each other and cracked up laughing.  So from then on, whenever I can’t come up with that word I am looking for, I just say “Shaboomaha” and it immediately eases the tension and makes us relax.  By the way, usually when I relax I remember what I wanted to say.  Once again, it reassures us how important humor is in our lives, especially when dealing with a devastating disease like Alzheimer’s.  Try it and let me know what crazy word you come up with to get past the frustrations!!  

I agree with Barbara that humor is a very useful tool to ease stressful situations. I use it with my children to diffuse anger and frustration, and also at the office. My grandmother used to say, “Oh Fiddlesticks,” and I tend to spout out, “Clearly, I need retail therapy.”

If you’d like to learn more about Alzheimer’s and how you can help us in the fight to find a cure and the effort to ensure local support groups are available to those facing the disease, please visit www.alz.org/kyin.

Bonnie

 

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Thoughts from Walk Committe Member Barbara Webb

Posted on September 16, 2012 | Leave a comment

It has been a week since we participated in the Walk to End Alzheimer’s and I can still feel excitement inside myself.  What a glorious day!!!  It was raining when we got up, it rained almost all the way downtown, but just as we arrived in front of the Great Lawn, it stopped raining and the sun came out.  God’s timing is so perfect!!  Everyone was buzzing around setting up and greeting people.  The Lawn was a sea of white and purple shirts, everyone showing their support for the Walk.  There were youngsters, young adults, middle-aged adults and those of us with grey hair (Al adds, some of us without hair!).  Even some dogs turned out for the event.

 You could feel positive energy and excitement from the people who were registering everyone to the folks manning the various booths to the announcers who talked of their personal experiences with Alzheimer’s.  Al and I were fortunate enough to be on the stage and be introduced, Al as someone with Alzheimer’s and me as a caregiver.  Beforehand, when we were asked to participate we were told we would not be saying anything, but the announcer changed plans midstream, as announcers sometimes do.  He began asking Al questions about living with Alzheimer’s.  I have to tell you that I held my breath because I wasn’t sure what Al would say or if he would be able to handle the questions under pressure.  But I was so proud of him.  He spoke from the heart and answered all the questions beautifully.  I guess all those years of public speaking paid off.  He felt proud of himself, too, because was able to still do something he has always been able to do in the past.  Since there are so many things he has been robbed of doing, this was a great accomplishment.  Sometimes we don’t give our loved ones enough chances to still do things they were always able to do.  Thank goodness our announcer allowed Al to be himself and talk out about his disease.

There were so many people who worked so hard to make the Walk to End Alzheimer’s a success.  I can’t begin to name everyone so I will just mention one person.  As chairperson, Bonnie Hackbarth showed her commitment to end Alzheimer’s right from the beginning.  Her energy, excitement and enthusiasm were evident throughout the entire planning process.  I never heard her get discouraged or negative.  She was an inspiration to everyone.  I can’t think of another person who could have done the job as well as she, so Bonnie, THANK YOU FROM THE BOTTOM OF OUR HEARTS!!

Participants in the 2012 Louisville Walk To End Alzheimer’s hold up their flowers to symbolize how they are affected by Alzheimer’s.

Barbara Webb

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Posted in Living with Alzheimer's, personal stories, Walk to End Alzheimer's

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2012 Louisville Walk to End Alzheimer’s – A Retrospective

Posted on September 11, 2012 | 1 Comment

Dear Family and Friends,

The early morning of Sept. 8 began wet, wet, wet. The skies opened up every few minutes throughout the two hours beginning at 6:30 a.m. when the volunteer crew and Alzheimer’s Association staff arrived to set up for the expected 2,000 participants.  At one point, we all had to gather under the interstate overpass because of lightning.

Nonetheless, the moving truck got unloaded, pop-up tents went up, the tables were spread out, and the trash bins were placed. Those cardboard bins may have wilted a little, but not the volunteers! We slogged through hundreds of  puddles and carefully unfolded and refolded our soggy site maps, remaining steadfast in the assurance of a forecast promising that the rain would stop before participants started arriving at 8:30. We had lots to be grateful for – donations had totalled $217,000 before the Walk even began and it looked like we would meet our goal of $288,000. I’m still hoping that, when all the numbers are in, we will have reached my personal stretch goal of $300,000.  Who knows what that extra $12,000 might help researchers uncover?

Perhaps you were there at Waterfront Park when the sun broke through.  I had looked up to spy a little patch of blue in the sky above the western horizon about 8:15. I threw my hands in the air and hollered to the crew, “It’s coming! The sun is coming!”

A few people smiled; a couple laughed. Most people just kept on working. But it was about 8:40, as the participant flow was really gaining strength, that the clouds just slid away and all of the sudden, the air was awash with a filtered light as soft and refreshing as an early spring afternoon. The temperature was absolutely perfect…a light jacket was all you really needed to keep the nip away; as the crowd grew even larger, many new arrivals came in short-sleeves and flip flops.

I felt like my mother-in-law had sent us the experience of some of her best memories on earth. Oh, how she used to love the California sun, travelling there with her beloved husband every winter for a couple of months to escape the Wisconsin deep freeze.

We had 2,752 check in  for the Walk on Saturday – the largest crowd EVER since the Walk began in Louisville.  It seemed like every sponsor booth had visitors, and the walkways between sponsors were filled with movement.  at 8:45 a.m., when Joe Arnold and Coyote Calhoun asked people to raise their memorial pinwheel flowers in honor of those affected by Alzheimer’s, hundreds of colorful petals were spinning in the breeze — a myriad of hues illustrating that Alzheimer’s affects thousands of our family members, neighbors and friends, and that we were coming together to remember, to learn and to fight. I looked to my husband and to the Alzheimer’s CEO Teri Shirk – both were a little choked up for that moment.

Sometimes volunteers and staff members get caught up in the planning and the work and the logistics of a big event. For a short period Saturday morning, with the warmth of thousands of family members and friends standing together under an absolutely clear sky, we were caught up in the moment.

Sincerely,

Bonnie

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Posted in Living with Alzheimer's

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The Story of Catherine Walker

Posted on September 6, 2012 | Leave a comment

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

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If It Were Just the Memory Loss

Posted on August 27, 2012 | 2 Comments

Dear friends and family,

At a brainstorming meeting for Louisville Walk to End Alzheimer’s team captains last week, I talked with a woman who had just lost her husband at age 60 to Alzheimer’s disease. So much for the concept that Alzheimer’s is only about older people who will be dying soon anyway.

That sounds really harsh, and perhaps a bit bitter, I know. But that concept is one of the barriers we face in raising awareness and money for Alzheimer’s research and support services.  Here is my response:

1.  Early onset Alzheimer’s can affect people even in the 40s. The woman whose husband passed away in July said he was diagnosed at age 54. While our family was devastated at the loss of my mother-in-law who suffered 13 years with Alzheimer’s before her death at age 91 last week, I am grateful for the 20+ additional memory-intact years we had with her that my new friend was unable to have with her husband.

2. The memory loss is just one aspect of the disease.  Other symptoms of Alzheimer’s can include personality changes that make caring for your loved one incredible difficult.  Anger, aggressiveness and severe depression are just some of these symptoms.  There’s also the embarrassment of having to have assistance with eating, toileting and other personal care - these experiences can lead to uncharacteristic outbursts  of frustration that grow more and more common, and often more severe, as the patient continues to lose functionality.

There are medications that help slow some of Alzheimer’s disease’s symptoms, and they are  a huge blessing.  To date, however, there is not one drug that can slow the progression of the actual disease itself.  So, as of now, once the connections inside the brain of the Alzheimer’s patient are broken, they cannot be mended. Retraining eventually becomes impossible as more and more connections are destroyed.

3.  And then there are the dangers that become more and more serious as the person with Alzheimer’s continues through the later stages of the disease.  A dear friend of mine had to lock all of the exterior doors in her home so that her husband, who had been a nuclear physicist for NASA, wouldn’t wander away and get lost.  Imagine having to child-proof your home to protect your formerly brilliant spouse from going out to work in his garden.

4.  Alzheimer’s doesn’t just affect the person who has the disease. As with other diseases, it affects the whole family, including the spouse or child who is often the primary caregiver.  While more than 80,000 Kentuckians have Alzheimer’s today, there are nearly 265,000 family members and friends who are providing care for someone with Alzheimer’s in Kentucky, according to the Alzheimer’s Association.

If it were just the memory loss, that would be sad enough. But it’s the loss of dignity, the personality changes, the danger of wandering away or eating something bad for you or forgetting how to swallow that make Alzheimer’s so insidious. It is the inability to say goodbye. It’s the thousands of unpaid hours of care in a situation that, as of now, can only end in death.

The purpose of my blog is to help increase understanding of what Alzheimer’s is and how it really affects the individual who has been diagnosed, as well as his or her friends and family members.  I also hope to encourage more people to get involved. If you haven’t already, please visit www.alz.org to learn more. Thank you.

Sincerely,

Bonnie

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Posted in Caregiver, early onset, Living with Alzheimer's, personal stories, Research, Statistics

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

Posted on August 16, 2012 | Leave a comment

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

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Posted in Backyard Baseball, Fundraising, Research

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I Want My David to Always Be “My David”

Posted on July 18, 2012 | Leave a comment

Dear Family and Friends,

The “C” word used to be the scariest entry in my personal dictionary of healthcare nightmares.  And while the potential of being diagnosed with cancer, the disease that caused the early deaths of both my parents (my mom at only 56 years old), led me to adopt a few healthier lifestyle changes and scared me into never trying tobacco, the truth is that I’ve never been consistent about staying fit or eating correctly. I drink way too much diet soda. I am very creative about justifying chocolate. I exercise only in fits and spurts.

 I donated to cancer research. I was moved by my Dad’s taxing effort to complete a cancer walk in 2008, just a few months after his diagnosis, as a symbolic gesture to honor my mom for the walk she was too ill to finish in 1995. I supported the disease awareness efforts of family and friends.

 Now in our early 50s (VERY early), my husband and I are still relatively young. But every medical test still comes back clean.  We recognize that we are blessed. We understand that we should do more in terms of preventative behavior. I miss my mom and dad terribly.

 I guess I’ve never truly believed my health was at immediate personal risk. My parents have been gone a while now. The fear has faded.

 In recent years, the subject of my healthcare nightmare has refocused in a new direction.  And this time, I think that the fear is even more real because I am worried about the health of my husband, David, rather than my own health.  The shift has occurred as my mother in law, Natalie, continues her 13-year battle with Alzheimer’s disease.

 Today, this woman who journaled every day of her interesting life of travel and fun for decades can no longer hold a pen in her tightly curled-up hands.  She does not recognize anyone; not her daughter in law, not even her children. Her chin rests as if glued permanently onto her chest. Her eyes are unfocused, often closed, although she is not sleeping.  He lights have gone out.

 As recently as early last year, when my David and I were visiting Natalie, she heard Dave’s voice as when he walked up behind her and said, “Hi Mom.”  She immediately lifted her head and smiled, “That’s my David.”

 She might have meant her husband, David. The moment of joy, though powerful, was just a moment. It hasn’t happened in a very long time, and it may never happen again.

 I truly love Natalie. She was a great mother in law to me, especially after I lost my own mom. And Natalie is certainly one of the reasons I volunteer for the Alzheimer’s Association of Greater Kentucky and Southern Indiana.

But the driving force behind my volunteer efforts is the fact that I want my David to ALWAYS be My David. 

 I want to know that he will continue to rigidly follow his morning routine, and to be able to count on the fact that he will take exactly the same amount of time to get ready to leave the house whether we are on time or running a little late. I want to know he has a Plan B. He’s always has one.

As we enter our empty nest years, we hear stories about some of our friends wondering how their marriages will survive the lack of children’s activities and issues to keep them engaged with each other.  Not us.  David and I relish the coming years, and have loved virtually every moment of the tastes we’ve enjoyed as our youngest daughter goes to and from college. We look forward to watching our girls start their careers, create new families and discover what’s truly important to them.

I watched my mom suffer with cancer for 10 years.  My dad died more quickly, in a mere nine months.  Both deaths were incredibly difficult, but bearable. I was far away. I could compartmentalize.

 Perhaps it’s wrong to admit this, but I just don’t think I could bear it if I were to lose who David is long before I lost him to death. I need his light in my life. Next to my Heavenly Father, it is the most brightly burning light I can imagine. I cannot compartmentalize David’s role in my life.

 That’s why I am chairing the 2012 Louisville Walk to End Alzheimer’s.  I want a cure to this disease to be found in my lifetime.  I don’t want my husband to get a diagnosis of Alzheimer’s.  And I don’t want my children to face a future where Alzheimer’s is still a possibility.

 If you’ve read this far in my blog post, perhaps you have a personal connection to Alzheimer’s as well.  Please, visit www.alz.org/kyin and sign up to play your role in finding a cure. Sign up a team to Walk to End Alzheimer’s.  You’ll be playing a small role in my love story as well.

 Sincerely,

 Bonnie

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Ginger and John Sanders’ Story Chronicled on KYForward

Posted on July 12, 2012 | Leave a comment

Dear Family and Friends,

The first installment by Kentuckian Ginger Sanders about her husband’s diagnosis with Alzheimer’s and their life since then can be found on today’s KYForward.  I’m grateful that Ginger is sharing her experience and hope that those who read it will be reminded that they’re not alone, and that their experiences and thoughts are shared by many others in Kentucky

Here’s a link to Ginger’s first post: http://www.kyforward.com/2012/07/alzheimers-diary-ginger-sanders-chronicles-her-trying-journey-through-husbands-illness/

If you would like to share your story on this blog, please email me at bonnie@guthriemayes.com.  Thank you!

Bonnie

 

 

 

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Posted in early onset, Living with Alzheimer's

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Monday’s Prize: Ultimate Movie Snack Basket

Posted on July 9, 2012 | Leave a comment

Make Monday “MARVELOUS”

To adapt Billy Crystal’s famous sayings, YOU ARE MARVELOUS! 

 Today’s Challenge:  For EVERY THREE WALKERS that join your team TODAY, we’ll enter you in a drawing for the ULTIMATE MOVIE SNACK BASKET!

This is a great opportunity to encourage those returning team members to go ahead and register.  Grab the low hanging fruit and share the rewards!! Register at :  www.alz.org/walk

For more information on recruitment efforts or to have one of our staff members visit your company or facility, please contact Whitney Vogel whitney.vogel@alz.org or 502-451-4266

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