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+ hours in bed a day, 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.

Vascular Parkinsonism (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 (PSP) 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.

Symptoms include loss of balance while walking, stiffness, unexplained falls (usually backward), awkward gait, irritability, forgetfulness, loss of interest, impaired thinking, sudden laughing or crying, apathy, problems controlling eye movement, blurred vision, inability to maintain eye contact during conversation, slurred speech, trouble swallowing solids or liquids, and more.

Based on the symptoms of each disorder, your husband appears to match closely those of PSP, rather than Vascular Parkinson’s.

Treatment for Progressive Supranuclear Palsy can be difficult as there are no truly effective medications or therapies. Medications which increase levels of dopamine can be successfully used in about 30% of those diagnosed with PSP but effectiveness is limited to about two years. Antidepressants such as Prozac appear to improve symptoms for some but it is not clear why.

Botox injections into specific muscles around the eyes may block chemical signals which cause involuntary eyelid spasms or eye movement. Bifocal or prism glasses may aid problems with looking downward. Speech and swallowing therapy may help individuals 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 individual down.

I urge both of you to return to his neurologist to discuss possible 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 number 10 envelope and $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.