WomenAgainstAlzheimer’s Launches Shadow Box Memory Project!

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Last month, I had the pleasure of attending the WomenAgainstAlzheimer’s Out of the Shadows Summit held in Washington, DC. While there were many memorable moments over those two days, one of the highlights was our evening at the National Museum of Women in the Arts.  That night, the WomenAgainstAlzheimer’s (WA2) Network launched its Shadow Box Memory Project.

Photo Credit: WomenAgainstAlzheimer’s

Prior to the Summit, attendees were invited to create shadow boxes containing pictures and memorabilia honoring loved ones affected by Alzheimer’s disease. Each shadow box was as unique and beautiful as the person that inspired it. Seeing the display was a powerful, moving reminder of why we are determined to keep fighting until we stop Alzheimer’s in its tracks.

Now WomenAgainstAlzheimer’s wants to know what you think about expanding this project, creating a national campaign to raise awareness about the disease – much like the AIDS Quilt did for AIDS. Did you know the quilt boasts an impressive 48,000 panels and a nomination for the Nobel Peace Prize??!

As we prepare to mark the beginning of National Alzheimer’s Awareness Month, please take 2-3 minutes to respond to this brief survey. Your feedback is very valuable to WomenAgainstAlzheimer’s, and your time and opinions are truly appreciated.

Click here to take the survey:  https://www.surveymonkey.com/s/GLLXNHK

Thank you so much and feel free to share this with others who have been touched by Alzheimer’s. Together we can and will make a difference!

Love and Alzheimer’s

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I’m so happy to share this Q&A and guest post from Bruce Williams, a fellow Buckeye, Alzheimer’s advocate, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias contributor.


How did you and Ann meet and fall in love?

Bruce:  Ann and I are originally from Ohio. Born 8 days apart, we led eerily similar lives. Previously married for 12 years, divorced for four, we found each other in Ft. Lauderdale, FL. Married a mere six weeks after our first date, I can honestly say that we were soulmates from the beginning. Our life together has been one of abiding love, with a healthy dose of passion thrown in.

We had two sayings, “We’ll  never let anyone steal our joy” and, “We never want to look back on our lives and wish we had done ____________”. After the last of her boys were off to college, we moved up to a flying community near Daytona beach where she got her pilot’s license. Always the adventurer, she and a friend entered the Women’s Air Race Classic and came in second.

At what point did you know something was wrong? How was Ann diagnosed?

Bruce: Around five years ago, Ann said she couldn’t taste her food as well. We attributed it to a cold she had a few weeks previously. Her taste, along with her sense of smell, has never been the same since. As far as I can tell, her cognitive problems started about four years ago, if not before.

After several neurological tests, she was diagnosed with Mild Cognitive Impairment.  A personal friend of ours gave her the diagnosis of Alzheimer’s Disease after an MRI in his neurological practice, and the elimination of every other condition.

Why did you start writing? 

Bruce: My emotions ran between denial, fear, hopelessness and rage against a cruel God who, after giving the greatest gift I’ve ever had, was stealing her away.  One brain cell at a time.

Seeking some peace, and wanting to tell her story, I started to write. Putting my thoughts down has helped me understand the disease and open my heart to what unconditional love is all about when faced with the unknown.

 

Bruce was kind enough to share this touching piece about the reality of Alzheimer’s. Feelings of sadness and loss, of course. But a change in perspective allows him to appreciate Ann’s beauty – and their love – in a new light. 

The Diamond

by Bruce Williams

I often get a sadness not unlike mourning. It is not the anguish one feels upon the sudden death of a loved one but a drawn out process that develops a life of its own every time a new event or “milestone” intrudes on our lives.  Morphing into a dark presence that threatens to steal the joy I’ve always had with Ann, I finally break free for a time and realize its way too premature to mourn.

I do feel, however, that small parts of her are lost forever. She’s not the same girl I married 27 years ago but, in view of what she’s going through, I love her more now than I did at any point in our marriage.

As her personality changes ever so subtly, I can liken the experience to a jeweler examining a diamond. Accustomed to viewing it only from the top, One might notice a few flaws. Small pieces of carbon dimming the reflection, and to some critical eyes, reducing its value.  I realize that, while I can’t alter her position, I can change my own perspective.

By peering at this precious gem of a lady from a different angle, I discover a new treasure, never before seen.  Suddenly, those tiny specks are lost in the sheer brilliance of a magnificent cut, polished by the Master Craftsman Himself, for me, our family and all those who love this wonderful woman to enjoy.

Still Alice: Bringing Alzheimer’s into the Spotlight + Book Giveaway

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“Interesting subject, seems it’s becoming very topical.”

Last week, I attended a wonderful fundraiser featuring Dr. Lisa Genova, author of the New York Times best selling novel, Still Alice.

I overheard the aforementioned statement at the reception prior to the main event. Becoming very topical??? Excuse me if I’m a bit passionate, but this illustrates the fact that we have much more work to do. While awareness has increased significantly over  the past 10 years, the mainstream population still doesn’t grasp the gravity of the epidemic we’re facing.

Those of us personally affected understand the urgency surrounding Alzheimer’s. We are terrified that we might be next. This disease has changed our perspective in countless ways, but there are too many people who are still in the dark. It’s often said there are two kinds of people; those who have been personally touched by Alzheimer’s and those who will be.

Educating the Masses

Moments after hearing the rather lackadaisical remark, I had the opportunity to meet Dr. Genova, herself a neuroscientist by education. I thanked her for all she’s doing to raise awareness among the masses because she is reaching people who wouldn’t typically seek out a book about a woman with Alzheimer’s. Book clubs across America are reading Still Alice; people are being touched deeply and inspired to get involved. Readers are beginning to understand the disease and talk about it. With that we’ll begin chip away at the stigma and shame associated with dementia.

Remember when no one wanted to utter the word “cancer” or discuss HIV? It wasn’t until movements were created around these killer diseases that things began to change. My sincere hope is that the press Still Alice is receiving will stir the masses. The reality is, people need to get good and pissed off. Every son, daughter, husband, wife, partner, brother, sister, friend, neighbor, co-worker must understand that sooner or later they too will experience the wrath of Alzheimer’s firsthand unless we take action in a major way.

Graphic: USAgainstAlzheimer’s

We must let our government know it’s absurd to think that Alzheimer’s disease is the only leading cause of death without a means to cure, prevent, or even slow its progress. It’s utterly  incomprehensible that we’re spending $215 billion annually on Alzheimer’s care in the United States and a mere $500 million on research. And people need to know that this is not just a disease of the elderly.

Understanding Younger Onset

In Still Alice, Alice Howland is a brilliant cognitive psychology professor and world-renowned linguistics expert, who at age 50 begins to have trouble finding words. She’s becoming increasingly confused, disoriented, and forgetful. This highly accomplished, well educated, far from elderly, woman has younger onset Alzheimer’s. The disease takes hold and doesn’t let go.

I must be honest. I’ve had this book on my Kindle for several years, and I haven’t worked up the courage to read it. There’s something about the idea of knowing what it feels like in those early years. Fear, denial, a desperate desire to keep the secret and hide the fact that something is terribly wrong. These are all things my mom must have experienced, and the thought of that breaks my heart. She must have felt so alone in those early years, quite possibly even before she retired at age 61, as she started to realize the brain she had always taken for granted was now failing her.

You are so much more than what you remember.

Dr. Genova’s exhaustive research included speaking with many individuals living with younger onset Alzheimer’s. While the book is a work of fiction, it’s very much based in the reality of living with this disease. People in their 40s, 50s, and 60s are living Alice’s story every single day. As my 50th birthday looms around the corner, that hits a little too close to home.

Still Alice, the movie, will be released widely in January, and there is already talk of multiple Oscar nominations. As someone whose life was changed forever by this horrific disease I am so thankful to Dr. Genova, executive producer Maria Shriver, and everyone involved in the making of this film. Together, they are making a difference, changing the way America views Alzheimer’s, and helping to bring it out of the shadows.

Raise Your Voice

Last month at the WomenAgainstAlzheimer’s Summit in Washington, we heard from leading researchers Dr. Reisa Sperling (Brigham and Women’s) and  Dr. Kate Zhong (Cleveland Clinic) among others. Their talks were filled with hope. Great work being done in research centers across the country, and each day we’re getting closer. The day will come when we have a cure or at least a viable way to slow the disease’s progression, but we have to keep fighting.

Graphic: USAgainstAlzheimer’s

In a few weeks, we’ll be heading to the polls. There’s no time like the present to call or write your senators and representatives! Let them know how important this issue is. Remind them that every 67 seconds, someone is diagnosed with Alzheimer’s and that if we remain on the current trajectory, the cost of care in the U.S. alone will exceed $1.2 trillion by the year 2050. Tell them your personal story. Let your voice be heard!

Postscript

After writing this piece, I gathered my courage, sat down, and read Still Alice cover to cover. While the book is fiction, I believe the author’s careful research resulted in a very realistic depiction of younger onset Alzheimer’s. Alice’s story is tender, frightening, and certainly thought-provoking, but mostly, it’s a wonderful reminder that our loved ones living with dementia are very much alive and present.

Those living with this disease are capable of experiencing love and joy, just as they are able to feel sorrow and loss. We must remember they still have so much to contribute to our world and they deserve every opportunity to do so. As critical as research is, we must also focus on those living with Alzheimer’s today and do everything possible to support their needs and the needs of their families and caregivers. 

giveaway

 

 

One lucky reader (continental U.S only, please) will receive a copy of Still Alice, signed by the author. To enter, simply leave a comment on this post. A random winner will be drawn on November 1st to mark the beginning of Alzheimer’s Awareness Month. Best of luck!

Guest Post: Dementia in the Workplace

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purpleangel1Today, I’m pleased to share a guest post by Derek Fisher. In this piece, Derek discusses dementia in the workplace and the need to help businesses become dementia friendly. With people like Norman McNamara leading the charge, I suspect the UK may be doing a better job of reducing the stigma than we are in the States. Even so, I think we can agree there’s a lot more work to be done worldwide. Continue reading