Misunderstanding of diagnosis causes confusion
Dear Dr. Gott: My 73-year-old husband has been diagnosed with vascular Parkinson’s (progressive supranuclear palsy).
After the neurologists’ diagnosis, I did research on the Internet and found that my husband has every symptom, both physical and mental. His falls started several years ago. His movements are now painfully slow, his thinking is impaired, he has trouble swallowing, spills foods, requires help getting up and down, has great trouble walking even with a walker, has lost weight, is very weak, spends 15-plus hours in bed a day, and has a blank stare and reduced eye movement (says he can’t see).
He has not accepted that there is no cure and asked that I write for your opinion on the best place to seek help.
Dear Reader: I believe you may have misunderstood the diagnosis, since vascular Parkinsonism and progressive supranuclear palsy are two separate, yet similar, disorders.
VP is caused by small strokes within either or both of the basal ganglia portions of the brain. Symptoms include resting tremor, rigidity, slowness of movement and difficulty walking. Some patients may experience sudden onset of symptoms as well as a stroke-like event. Others may be completely unaware of the strokes and develop gradual worsening of symptoms.
Diagnosis can be difficult since it closely resembles typical Parkinson’s disease and is often misdiagnosed as such in the early stages. Brain scans will show evidence of strokes. Treatment is primarily aimed at eliminating future strokes.
Progressive Supranuclear Palsy is also a Parkinson-like disorder but differs in several small ways. Like VP, it is often misdiagnosed as Parkinson’s disease in the early stages. The symptoms are caused by deterioration of nerve cells in several tiny areas of the brainstem, including an area commonly affected in typical Parkinson’s disease.
Based on the symptoms of each disorder, your husband appears to match closely those of PSP rather than VP.
Treatment for PSP can be difficult, as there are no truly effective medications or therapies. Medications that increase levels of dopamine are successful in about 30 percent of cases, but effectiveness is limited to about two years. Antidepressants such as Prozac improve symptoms for some, but it is not clear why.
Botox injections into specific muscles around the eyes may block chemical signals that cause involuntary eyelid spasms or eye movement. Bifocal or prism glasses may aid problems with looking downward. Speech and swallowing therapy may help people regain or improve function. Balance therapy and aids such as walkers, railings and others can prevent falls or reduce damage caused by falls by slowing the person down.
I urge both of you to return to his neurologist to discuss treatment options.
To give you related information, I am sending you a copy of my Health Report “Parkinson’s Disease.” Other readers who would like a copy should send a self-addressed, stamped No. 10 envelope and $2 to Newsletter, P.O. Box 167, Wickliffe, OH 44092. Be sure to mention the title.