DEAR DR. ROACH: My husband was diagnosed with progressive supranuclear palsy, or PSP. We have been told that it is rare and that there is no treatment and no cure. Would you please explain the stages and progression of this disease? What can be done to help with the various symptoms, and what should we expect? Is there an average timeline of the disease’s progression? We were told to discuss the possibility of a feeding tube in the future, but would that only prolong a decline that is irreversible? Would refusing a feeding tube prevent any hydration and nutrition, or would my husband still be able to take these orally? — Anon.
ANSWER: I am very sorry to hear of your husband’s diagnosis, as PSP is a condition that progresses relentlessly. There are several variants of PSP, with some differences in how soon certain symptoms occur. It may resemble Parkinson’s disease, especially at onset, but PSP is only 1 percent as common as Parkinson’s. The predominant symptoms include loss of balance with falls, eye-movement weakness, weakened movements of the mouth, tongue and throat, and personality changes resembling depression. The age of diagnosis most often is in the 60s, but it can happen as early as the 40s.
It is impossible to say what will happen in a given individual, but most people become dependent within six years of diagnosis. There is no cure, but medications may be helpful. Physical and occupational therapists are critical in helping maintain the ability to do day-to-day activities, and since swallowing problems are very common, dieticians can help slow the need for a feeding tube. A feeding tube is placed when hydration and nutrition can no longer be safely given orally.
I have given just a brief outline of this condition. I found an exceptional foundation with many resources at www.psp.org. I strongly recommend looking through its information.