The elusive limelight

No rare disease advocate wishes illness on anyone, but we do all hope that one of PSP’s inevitable sufferers will happen to be a celebrity. 

When Michael J. Fox announced his diagnosis, awareness of Parkinson’s disease and fundraising for its research took off.  Amyotrophic lateral sclerosis, its prevalence no more common than that of PSP, would still languish in obscurity without Lou Gehrig.  Awareness that Alzheimer’s disease was not “accelerated aging” nor a circulatory problem was boosted early on by the plights of Rita Hayworth and more recently of Ronald Reagan, Glenn Campbell and Pat Summitt.  Robin Williams brought Lewy body dementia to popular consciousness for the first time.

PSP has never had a celebrity advocate who was an affected person.  The only real candidate emerged in 1999, when British comic actor Dudley Moore announced his diagnosis.  Shortly thereafter, a profile of Mr. Moore on the TV newsmagazine “20/20” brought the disorder some degree of attention.  In fact, at least a couple of new patients came to me after recognizing their own neurological deficits in the 20/20 piece.  A few months later, Mr. Moore himself became my patient.  He told me that he appreciated that PSP needed a celebrity spokesperson and offered to help in fundraising, but declined to become its “poster boy” (his words, not mine).  He did participate in one fundraiser before his death in 2002 and I never tried to wheedle any video clips, interviews or other forms of publicity out of him.

CurePSP did attract as its spokesperson for a number of years a celebrity whose father had PSP.  Starting in about 2005, Patricia Richardson, an accomplished actor who in the 1990s had played opposite Tim Allen in the TV sitcom “Home Improvement,” joined CurePSP’s Board of Directors.  When we appeared at events together, she was admirably persistent in prodding me to translate my scientific presentation into language appropriate to the audience.  She was generous with her time for CurePSP’s outreach and support services.  But in 2015, she and CurePSP parted ways. 

About a year ago, Linda Ronstadt announced that she had been diagnosed with PSP.  The CurePSP leadership immediately attempted to propose a spokesperson relationship, but were unable to establish contact at all.  In a September 2019 “New Yorker” magazine profile ahead of the release of the new documentary, “The Sound of My Voice”, she said, “I’ve just accepted it. There’s absolutely nothing I can do. I have a form of Parkinsonism that doesn’t respond to standard Parkinson’s meds, so there’s no treatment for what I have. It’s called P.S.P.—Progressive Supranuclear Palsy.”  But the documentary itself mentions only “Parkinson’s disease.”  (A digression: Perhaps, like many patients and caregivers, Ms. Ronstadt is under the misimpression that PSP is only a more severe form of PD, in which case she may think that someone with PSP could be said have both, one being a subset of the other.  I won’t share my own diagnostic impression on PD vs PSP based on her current speech, facial movement and eye movement as they appear in the documentary.  I’ve been around long enough to know that diagnoses relying of such fragmentary data are risky.) 

So PSP still struggles to enter public consciousness. A glimmer of hope appeared on major network TV on January 7, with the premiere of the NBC series, “Zoey’s Extraordinary Playlist.”  The star hallucinates that others communicate their feelings in the form of impromptu song-and-dance numbers.  Her father, with advanced PSP, is played with admirable accuracy by Peter Gallagher.  Sure enough, in one of the pilot episode’s musical scenes, the father, aware of his daughter’s multiple professional and personal anxieties, breaks out of his immobile, mute state into a tender song of encouragement.  The script does not include the term “PSP” or “progressive supranuclear palsy” but press blurbs and cast interviews do so.  Of course, this does not provide a real-life celebrity spokesperson, but at least it’s publicity.

Of course, I hope that no celebrity – or anyone else – ever comes down with PSP.  But once the inevitable happens, perhaps he, she or a loved one will be willing to sacrifice some time, energy and privacy to the cause.