Still Alice: Breaking Through Old Stereotypes

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This past week, I had the pleasure of attending a screening of Still Alice followed by a panel discussion organized by our local chapter of the Alzheimer’s Association. I’d seen the film the first day of the wide release, but watching it for the second time was a completely different experience.

The event was sold out, which in and of itself felt like a victory. Just being in that space with so many people united in the dream of a world without Alzheimer’s was overwhelming.

Julianne Moore’s portrayal of Alice is brilliant, no doubt largely due to the careful research she did for the part. Last month, Sandy Oltz, Moore’s personal consultant and inspiration for the film, spoke at the Alzheimer’s Association’s Leadership Summit in Orlando. Sandy was diagnosed with younger onset at age 47. In many ways, she is the real life Alice; educated, accomplished, strong, beautiful, a wife and mother, and living with Alzheimer’s.

 Please do not think I am suffering. I am not suffering. I am struggling, struggling to be a part of things, to stay connected to who I once was. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment.

 

Sandy Oltz

Whether or not to see Still Alice, or when to see the movie and in what setting, is a very personal decision. I had the book on my Kindle for a couple of years before I worked up the courage to read it, and then it was only because I was going to be hearing Lisa Genova speak.

If you have lived the reality of Alzheimer’s disease, this film will be difficult to watch. It will inevitably remind you of moments with your own loved one: moments of anger, frustration, and fear. But it will also bring forth memories of a love the depth of which cannot be described. A love that goes far beyond words into a realm we never knew existed.

Still Alice has the power to change the way the world views Alzheimer’s. This movie represents a breakthrough. Alice is far from the stereotypical Alzheimer’s patient, and the message is simple: Alice Howland could be any of us.

There but for the grace of God go I.

We can only hope that as this powerful film works its way into the mainstream, people are inspired to join the movement to #ENDALZ. Because at the end of the day, it’s really just about love…

 

An Open Letter to Kent Wolgamott and the Lincoln Journal Star

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Dear Mr. Wolgamott,

My name is Ann Napoletan and I lost my mother to Alzheimer’s disease two years ago. I’m a passionate advocate in the fight to end this horrific disease and I found your recent reference to Still Alice as a “depressing ‘disease of the week’ movie” disturbing, disrespectful, and beyond insensitive.

The journey through Alzheimer’s with my mother changed my life forever, and I hope and pray you are never faced with watching a loved one slip away, over the course of years, in such a heartbreaking way.

My mother retired from a successful career at age 61 and began to show signs of cognitive decline shortly thereafter. She declined rapidly. Before my eyes, she transformed from a vibrant, independent woman – my rock – overflowing with life – to a terrified child who could not speak and needed around the clock care.

I have witnessed things no daughter should ever have to see; and she experienced things that no human being should ever have to suffer through.

I was robbed of too many years with this woman I loved so much; I was in my late 30’s when she became ill. She was robbed of the beautiful retirement she worked so hard for and dreamed of.

Take a look at this photo taken shortly after my mother retired, then compare it to the one accompanying this article. Aside from Alzheimer’s, she had no medical problems. THAT, my dear misinformed friend, is how someone DIES at the hand of the “disease of the week.”

In the space of four little words, you managed to blatantly disparage the suffering of over 5 million Americans living with this disease as though what they and their loved ones are living through is little more than a case of the chicken pox.

Shame on you for using the phrase, and shame on the Lincoln Journal Star for publishing these words.

Sincerely,
Ann Napoletan
#ENDALZ

Lincoln Journal Star refers to Alzheimer’s as “Disease of the Week”

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Friends,

It seems there is a rather uneducated movie critic writing for the Lincoln, Nebraska, Journal Star! Clearly, he needs our help!

Columnist Kent Wolgamott wrote a piece about the Oscars, in which he referred to Still Alice as a “Depressing ‘Disease of the Week’ movie.”

I think we should help educate Mr. Wolgamott as to what the Alzheimer’s journey is really all about. Please join me in reaching out to him at any or all of the following:

I would also encourage you to let the Lincoln Journal Star know your thoughts on this article.

Quite honestly, I’m amazed something like this made it across an editor’s desk. Blatant  disrespect for the millions of Americans dealing with Alzheimer’s every day of their lives.  Shame on you Lincoln Journal Star!

Glen Campbell: I’ll Be Me

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This week, I saw both I’ll Be Me and Still Alice. They were very different, but each was spectacular in its own unique way.

I think the Glen Campbell movie was the more difficult for me to watch for several reasons. The fact that it’s a true story makes it especially poignant, and for people of my generation it’s shocking to see an icon like Glen Campbell declining in this manner. As expected, there were also moments that reminded me very much of my mom.

I’ll Be Me is a documentary about Glen Campbell’s 2011-2012 farewell tour. The family decided to move forward with the tour despite the Alzheimer’s diagnosis Glen had received. Those closest to him didn’t expect the family to be on the road for more than five weeks; however, the superstar surprised everyone. The tour played more than 150 shows over the period of a year and a half.

And Glen was extraordinary.

Seeing clips from the height of Glen’s popularity, hearing those old hits like Rhinestone Cowboy, Southern Nights, and Wichita Lineman, and watching him play the guitar like nobody’s business on this tour resulted in many smiles from audience members. While his behavior became more erratic and he began struggling with simple tasks, the minute he picked up the guitar, it was pure magic. It was as though he had been transported back to the ’70’s.

Striking a Perfect Balance

Producer Trevor Albert and producer/director James Keach really highlighted the fact that Glen maintained his wry sense of humor and fun loving demeanor even as the disease chipped away at his mind. The lesson for those who are unfamiliar with Alzheimer’s is a simple yet vitally important one. People living with dementia do change drastically but they never leave us. They’re always very much “in there” – we may just need to venture into their world when they are having trouble navigating ours.

I was happy to see they did include a couple of very raw scenes demonstrating behavioral issues; anger, agitation, anxiety – all the things that the disease eventually brings. While unpleasant to watch, in order to paint an accurate picture, they must be shared.

Overall, the filmmakers found just the right balance, telling the story in an honest manner, sharing both the ups and the downs. In one scene, Glen and his wife Kim were at the Mayo Clinic, and the neurologist asked the questions we’ve all heard if we’ve accompanied a loved one with dementia to an appointment.

What year is it? Where are we? Can you repeat back the words I gave you a few minutes ago? Reminding me very much of my mom, Glen used humor to skirt around the fact that he didn’t know the answers. The expression on Kim’s face said it all and brought back vivid memories of my own personal experience.

Honor or Exploit?

Some have questioned whether I’ll Be Me exploited Glen once his condition began to deteriorate. I don’t think so. Throughout the film, it was quite evident that Glen was in his element. The minute he took the stage in front of his adoring fans, his heart overflowed with joy, and the moments shared with his crew, friends, and family offstage were equally heartwarming.

I found Glen’s relationship with daughter, Ashley, especially touching and tender. Their rendition of Dueling Banjos was astounding, and when they finished, everyone watching the film broke into applause – so caught up in the moment that it felt like we were watching the performance live.

I’ll Be Me is a beautiful and lasting way to honor Glen Campbell’s life and legacy. The affection and devotion surrounding the Campbell family shone brightly through the entire film and while there were plenty of tears, I think we all left that evening with our hearts full of love and hope.

I highly recommend seeing the film and pray it brings increased awareness to this horrific disease.

Click here to see when I’ll Be Me will be coming to your area. If you’ve seen the film, I’d love to hear your comments! And stay tuned as Glen’s song I’m Not Gonna Miss You is up for an Oscar later this month. A few weeks ago, it took the Grammy for best country song!

 

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A very special thank you to National Church Residences for sponsoring this event in Columbus, Ohio.

Postscript: This lovely article by Greg O’Brien, himself diagnosed with younger onset Alzheimer’s, appeared on Psychology Today’s blog in October 2014.