There are certain diseases that don’t achieve the prominence of cancer, heart disease and diabetes. Unfortunately, they become eye-, mouth- and brain-opening life-changing issues, when friends, families and well knowns are diagnosed.
Once of those diseases is Progressive Supranuclear Palsy (PSP), a fatal brain disease. It’s one of the nastiest in the corral of orphan diseases. The initial symptoms are a loss of balance, bumping into objects/peoples and falls.
Well, darn it. That could apply to a toddler or most any baby boomer. The problem is that eventually the patient develops changes in personality, general slowing of movement and problems with visions. Eventually, other problems arise like poor eyelid function, inability to sleep through the night, urinary incontinence/constipation and a stiffening of the neck muscles.
Interestingly, one of the keys to diagnosing the disease lies in the hands of ophthalmologists. They take a long look at the eyes of patients and see the slightest signs that indicate much greater needs than reading glasses.
Because PSP is such a rare disease, it is often diagnosed at Parkinson’s disease “because of the slowed movements and gait difficulty, or as Alzheimer’s disease because of the behavioral changes.”
So, what is the cause of PSP? Fewer than 1% are associated with a family member.
Sunday’s death of North Texas philanthropist/incredibly successful businessman Richard Rainwater resulting from PSP only proves that this orphan disease is very open-minded. It does not discriminate between the rich and poor or the successful and the failure. Diagnosed in 2009 and despite pouring $15M into the research of PSP, Richard succumbed to the disease Sunday.
He was a buddy of Fort Worth billionaire Sid Bass and former president George W. Bush, a part of owner of the Texas Rangers and invested big time in Crescent Real Estate. Still, one can’t help but wonder if making an appointment with an ophthalmologist might have extended his life.
Suggestion: See your ophthalmologist and follow it up with a yearly visit.
To the Rainwater family and friends, we offer our condolences and only wish that this orphan disease like so many others had found its resolution a long time ago.