-Reality
Update: One day after this news broke, amid outrage from the Reagan family and the Alzheimer’s community as a whole, Will Ferrell has pulled out of the film.
While I’m very thankful for this, the entire situation is indicative of a much larger issue. The events of the past two days illustrate there is a widespread misconception about exactly what Alzheimer’s is and what the disease does to everyone it touches. The fact that a comedic storyline of this nature was conceived of and a production company took on the project remains a travesty.
It’s a powerful reminder that we, as advocates, must remain tenacious as we go forward to educate the public about all forms of dementia. Perhaps Mr. Ferrell will now join us on that mission.
I am encouraged by the fact that over the past 24 hours, the outcry of thousands was heard loud and clear. It is my hope that at the end of the day, the media attention this yielded will help further our goal of bringing Alzheimer’s out of the shadows.
Patti Davis wrote an eloquent update to her earlier open letter, which you can find on her website, and my friend and fellow advocate, Mike Belleville, has started a petition calling for the script to be destroyed. As a 55-year-old living with younger onset Alzheimer’s disease, Mike has rather strong feelings on the matter. Please sign the petition and share widely on social media, asking others to do the same.
Fondly,
Ann
I haven’t been writing much due to lack of time and inspiration. However, upon reading about Will Ferrell’s upcoming film, Reagan, I find myself spurred by the asinine notion that Alzheimer’s disease provides an acceptable comedic storyline.
For those who haven’t heard, Ferrell will portray Ronald Reagan “in the throes of Alzheimer’s”[1] for a comedy feature he is also producing.
Clearly Mr. Ferrell has not watched helplessly as his mother literally lost her mind before his eyes over a long, slow, painful decade. He has not swapped roles with a strong, beautiful, independent woman in her mid-60’s, becoming her parent as she became a child again. He doesn’t know what it’s like to see the person who was always his rock suddenly need help with even the most intimate, personal activities of daily living.
I doubt Will Ferrell has had to take his mother’s car keys when it was no longer safe for her to drive or tell her she would have to leave her home because that, too, had become unsafe. He hasn’t received a phone call on a snowy, sub-zero winter night, and heard the voice on the other end of the phone tell him his mother has eloped and was found wandering up the middle of a busy street in the dark.
The actor hasn’t desperately tried to calm his mother when she screamed for hours on end, unable to explain what was wrong because she could no longer communicate verbally. Will Farrell has never stood by as his mother accused him of stealing from her because the paranoia that comes with Alzheimer’s had turned him into an enemy. Nor do I imagine he has watched as she was terrorized by the hallucinations that also accompany dementia.
Mr. Ferrell hasn’t fed his mother when she could no longer feed herself. He hasn’t seen the emptiness in her eyes as she blankly stares off into space, oblivious to her surroundings. He doesn’t have particularly poignant milestones indelibly etched in his mind – like the moment he realized his mother no longer remembered how to put on a pair of pants. And, he probably doesn’t know what it’s like when friends and family stop visiting because they “can’t handle seeing her like that.”
He hasn’t listened to his mother beg over and over again to “go home” or watched tears stream down her face when she’s having a moment of clarity and knows darn well something is terribly wrong. He hasn’t heard his otherwise non-verbal mother suddenly cry out, “HELP ME” or “I WANT TO DIE.”
God willing, Will Ferrell will never have to give his mother morphine to keep her calm and comfortable until the hospice nurse arrives in the middle of the night. And he won’t be forced to watch as Alzheimer’s ultimately kills her.
The experiences [2] I’ve mentioned in this piece provide a tiny glimpse into what it’s like to lose someone to this horrific disease. Believe me, what you’ve read is the sanitized version of reality. I saw a headline earlier this evening that asked, “Can Will Ferrell Make Alzheimer’s Funny?” I’ll let you be the judge.
Patti Davis, daughter of Ronald Reagan, has released an open letter to Will Ferrell. I hope you’ll take a moment to visit her website to read it. If you are as outraged as many of us, please share Ms. Davis’ letter widely.
[1] Patti Davis, An Open Letter to Will Ferrell, 04.28.16. http://booksbypattidavis.com/an-open-letter-to-will-ferrell/
[2] This is but a small sample of actual experiences I (and millions of other family caregivers ) have lived.
The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants through online games and activities, the right people can be assigned to studies faster, ultimately accelerating trials.
As data is collected and analyzed, some people will have an opportunity to increase their level of participation. This might include genetic screening, providing blood samples, sharing medical records, or even participating in a clinical trial. Keep in mind all of these additional activities are completely voluntary.
Respected leaders in Alzheimer’s research and advocacy from around the nation are partnering with UCSF to make this project a success. A few of those partners are the Cleveland Clinic’s Lou Ruvo Center for Brain Health, the Alzheimer’s Prevention Registry, Luminosity, the Alzheimer’s Drug Discovery Foundation, the Alzheimer’s Association TrialMatch Program, Brigham & Women’s Hospital, Massachusetts General Hospital, and the Global Alzheimer’s Platform Foundation! Now that’s a pretty impressive list!
The Long and Winding Road... 