The lesser known toll Parkinson's takes

The tremors, stiffness, and effects on mobility are well-known, but Parkinson’s has another side that’s less recognized, and often catches caregivers off guard.

More than ten million viewers recently watched Michael J Fox return to television with his program “Adventures of an Incurable Optimist.” If you watched the show, the toll that Parkinson’s disease has taken on the actor was clear. The tremors, stiffness, and effects on mobility are well-known, but Parkinson’s has another side that’s less recognized, and often catches caregivers off guard.
(Photo: “A PET scan can show patterns in the brain which aid the physician in diagnosing and treating Parkinson’s Disease”/NASA)

Listen: [audio:090526msparkinsons.mp3]

Lisa Wolper has witnessed many changes in her husband, Tim, since he was diagnosed with Parkinson’s disease seven years ago; shaking limbs, a loss of balance, a weakening voice – these are all things the doctors told her would happen.

Wolper: The one thing that I was not prepared for was the psychosis.

What is known as Parkinson’s Psychosis affects about 40 percent of patients, usually in the later stages of their illness. Wolper says her well-read and kind husband lately has had trouble concentrating. His short term memory is terrible, and he’s become suspicious:

Wolper: There’s some strange phobias, you know, somebody said something and it’s completely taken out of context. It’s like – do you think they don’t like me, that kind of thing. That wasn’t my husband before.

Wolper has discussed these behavioral changes with Tim, but says he’s very sensitive about the topic. A common problem, says Matthew Stern, professor of neurology at the University of Pennsylvania. For example, many Parkinson’s patients become paranoid, and suspect a spouse of having an affair.

In some rare forms of Parkinson’s, the delusions and hallucinations are caused by the disease as it progresses. But in the majority of patients, says Stern, the psychosis is a result of the many medications taken to control the physical symptoms:

Stern: If we think about what causes schizophrenia, one of the hypotheses is that there is too much influence of the chemical dopamine. And in Parkinson’s disease we treat these patients by augmenting their dopamine system, by giving them drugs that stimulate their dopamine type receptor, so in a sense we are doing exactly the right thing to cause hallucinatory problems

As terrible as the physical effects of Parkinson’s are, Stern says, the deterioration of the mind is the most devastating:

Stern: no matter how bad their tremor and stiffness and all the other motor symptoms of Parkinson’s disease , it’s those patients who have cognitive problems and particularly psychosis that become really disabled in terms of quality of life, burden to family, in fact the biggest risk factor of a patient with Parkinson’s entering a nursing home is really hallucinations and confusion.

Stern describes the difficulties of treating Parkinson’s psychosis: If you reduce the medications that cause the psychosis, the physical symptoms get worse. And some of the drugs that could target psychosis have strong side effects.

A new drug specifically designed to treat Parkinson’s Psychosis is being tested now – New Jersey neurologist Rocco DiPalla is one of the clinical investigators:

DiPalla: In smaller trials, this drug has been promising as far as treating this condition, the larger study is to see if in broader scale there is still efficacy with this medication.

If the drug proves to be successful, it will still take several years before it is available to patients.

Matthew Stern says scientists keep searching for what he calls “the prefect Parkinson’s drug”

Stern: We haven’t yet found the drug that can stimulate the right dopamine receptors, without stimulating the same receptors that can cause these adverse effects.

For Lisa Wolper, Parkinson’s disease has changed her husband, her marriage, and her life, and she acknowledges the stress it has put on her as the primary caregiver:

Wolper: It’s certainly challenged me to be more patient – it’s you know, at times you just want to scream

Wolper is hoping that new medications to deal with Parkinson’s Psychosis will come out in time to help her husband Tim.