I just learned that since 2014 there’s been a medical publication called Journal of Patient Experience. It’s on-line and open-access. They’ve just published an article entitled “Progressive Supranuclear Palsy: The Other Side of the Fence” by Beatrice Sofaer-Bennett PhD, an accomplished academic nurse with a faculty position at the University of Edinburgh. Most of her work has concerned the care of people with chronic pain.
Now, as you’ve surmised, Professor Sofaer-Bennett has been diagnosed with PSP and has described her own thoughts and feelings in a way that’s moving without being maudlin and informative without being technical. Her experience of receiving multiple other diagnoses before PSP will be familiar to most patients and their families. She makes a welcome and eloquent plea for better education of physicians about the disease. Perhaps her most helpful points describe how she handles the issue of her prognosis.
The article includes a couple of minor mis-statements of neurological fact, so don’t use this as a reference source. Also, I must tell you that her sudden sweating episodes and constant shortness of breath are very unusual in PSP. They are more common in people with MSA, which can be difficult to distinguish from PSP diagnostically. I mention these points only to avoid having anyone with PSP think that they can expect these things to happen to them, or if they do occur, to neglect having those symptoms specifically evaluated, thinking they’re just “normal” for PSP. Both can be symptoms of non-neurological, highly treatable conditions. But I haven’t evaluated her myself, so I’ll not criticize her neurologist’s diagnosis from afar.
So, Professor Sofaer-Bennett, thank you for sharing your thoughts and suggestions. Those of us working to improve the quality and accessibility of care for people with PSP appreciate your help and wish you the best in your journey.