Tag Archives: als

April 3, 2020 · 6:19 pm

Farewell to Steve Dezember, who shared his ALS battle with the world

While coronavirus is claiming so many lives around the world, this week I am mourning a metro Atlanta man, Steve Dezember, who died this week after a 9-year battle with ALS.

I don’t use the term “battle” lightly and am aware of the negative connotation such terminology can engender. But in this case, I believe the term applies. Steve showed courage, grace and humor as he fought back time and time again against all odds. I have followed Steve’s story for years after watching the moving documentary, Hope for Steve.

I’ve also followed the social posts from his wonderful, equally courageous and compassionate wife Hope has shared about the challenging ALS caregiving journey that are so enlightening. I love how she embraced the importance of self-care and wasn’t shy about sharing the difficulties along with the triumphs of being a long-term caregiver. The couple also shared the financial challenges that a disease like ALS creates. Steve made paintings from his wheelchair and Hope also created a variety of art that they used as fundraisers to support his care. A painting of his hangs on the wall of my bedroom.

steve painting

Following Steve’s journey over the years has made me more appreciative of having good health and in enjoying the simple pleasures of life. It made me admire the sacrifices that spousal caregivers make to tend to their loved ones. And even though this world can seem like a miserable world to be sometimes, watching Steve fight for another day offered an important perspective.

If you have the means, consider donating to an ALS charity in the name of Steve Dezember. Learn more about his journey and share his story. Keep his lovely wife Hope in your thoughts and prayers.

I hope you and your loved ones are staying safe during this challenging time.

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March 14, 2015 · 10:08 am

Determination in the face of disease

This week, Richard Glatzer, the co-director of “Still Alice,” died. He was only 63 years old. He had been courageously battling ALS since 2011, another debilitating disease that like Alzheimer’s, takes so much from a person and is devastating to watch as a family.

Glatzer saw the connection too, telling NPR that he almost didn’t want to adapt Lisa Genova’s book for the big screen, because it cut too close to the bone.

Embed from Getty Images

But it was Glatzer’s personal connection to independence-robbing illness that gave “Still Alice” a greater authenticity. The movie focused just as much or more on what the main character, dealing with early-onset Alzheimer’s, was feeling about her condition as it did about her family’s reaction to her declining mental state. This is the book’s running theme, and preserving that in the film offers a much more impactful experience than making it just another family illness drama.

But what impressed me most about Glatzer’s direction was his determination. Glatzer used a text-to-speech app on his iPad with one finger to communicate during the film’s shooting.

The next time I make excuses about not focusing upon my personal writing, I’m going to think of the fearless determination that those with devastating illnesses demonstrate, as they strive to leave their mark on the world or accomplish a personal goal before they depart.

 

 

 

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February 23, 2015 · 3:04 pm

Spotlight on devastating diseases at the Oscars

I’ve heard a lot of criticism about this year’s Oscars regarding the lack of racial diversity of the top nominees. But from my perspective, there was quite a bit of diversity when it came to showcasing people living with debilitating diseases. For image-conscious Hollywood, and its obsession with being forever young and perfect, I think this was a big step in the right direction that is being overlooked.

Of course, with my main focus on Alzheimer’s, I was thrilled to see Glenn Campbell’s final song receive an Oscar nomination. I’m not a Tim McGraw fan, but he did a beautiful and sensitive rendition of the song. Gwyneth Paltrow introduced McGraw and talked about Alzheimer’s.

BSM Studio/Sony Pictures Classic

BSM Studio/Sony Pictures Classic

Julianne Moore, as expected, won best actress for her portrayal of a woman with early-onset Alzheimer’s in “Still Alice.” I was thrilled, as she is one of my favorite actresses. She researched and spent time with those who have Alzheimer’s so she could deliver an authentic performance. During her acceptance speech, Moore talked about making Alzheimer’s more visible to the general public so we can raise awareness.

But there was more than just Alzheimer’s represented at the Oscars. The equally devastating disease, ALS, was also in the spotlight. Not only did the best actor award go to Eddie Redmayne, who portrayed the famous physicist Stephen Hawking in “The Theory of Everything,” but Richard Glatzer, one of the directors of “Still Alice,” is living with ALS. In fact, Moore mentioned during her acceptance speech that his condition prevented him from being at the Oscars.

So to many, the Oscars may have been boring and lacking in diversity, but for those of who have been touched by one or both of these terrible diseases, it was a night to remember.

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