Managing Parkinson’s

Hitler had it, and so did Mao Zedong, and others still living or departed: Yasser Arafat, Billy Graham, Janet Reno, Charles Schultz, Salvador Dali, Bob Hoskins and Muhammad Ali. Actor Michael J. Fox is its most prominent spokesperson. It killed my grandmother.

While not necessarily fatal, Parkinson’s disease is incurable, and differs from person to person in its severity and the scope of its symptoms. Its rate of progression varies, customizing it for each of its million-strong sufferers in this country. There are 50,000 or more new diagnoses each year.

For most of us, the symptom that sums up Parkinson’s disease is the tremor, a visible, usually obvious, shaking of the hand, the jaw or another body part. There is also often stiff, slow movements, or changes in speech, handwriting, or the sense of smell.

Because other conditions and medications cause symptoms similar to Parkinson’s, and because there is no definitive diagnostic test, it may go undiagnosed and untreated. People may think they have it when they don’t.

Sometimes symptoms begin on one side of the body only, and travel eventually to the other side. The first sign that something’s up may be when the person is sitting or standing still and a hand starts to shake. Or it may be an arm, a leg, the tongue, chin or lips.

This can be a symptom of other things, however, like other movement disorders or reaction to a medication. This is called Parkinsonism. Another symptom that can mean other things is Parkinson’s slow, shuffling, labored gait, with some sufferers feeling frozen in place, like their feet are stuck to the floor. Arms may not swing properly when walking. Difficulties with balance can lead to falls, forward or often backward.

A stooped posture is another symptom. Difficulty getting up in the morning or out of a chair can mean arthritis or other ills, but could be Parkinson’s. Cramps and pain may be associated with it as well.

With Parkinson’s disease, even minor muscle movements like smiling, blinking, swallowing, gesturing or writing may be impaired. Speech may slur or decrease in volume or inflection. The disease’s effect on the muscles can make the face seem mask-like, with a look that others may interpret as being depressed or vacant.

Down the road, the person with Parkinson’s may also experience irritability, anxiety, hallucinations, insomnia, depression, personality changes, incontinence, constipation, excessive sweating of hands and feet, drooling, oily skin or dandruff. Symptoms typically appear between ages 50 and 60 — and more in men than women — but in rare cases can be much sooner.

What causes this disease, with its insidious set of symptoms? Science is not really sure what makes the nerve cells in the brain that control body movements stop working so well. We’re still not sure whether it’s heredity or environment. If there is Parkinson’s in your family it doesn’t mean you’ll get it. Likely not, though if there is a lot of Parkinson’s in your immediate family your chances may be higher. Some blame viruses or toxins like pesticides, or trauma, such as from boxing or use of illegal drugs. Many experts blame a combination of factors.

A multi-disciplinary approach focused on medication and lifestyle changes is recommended. Helpers include maintaining social contacts, remaining involved in enjoyable activities as much as possible, from classes to travel to community activities, and perhaps a support group. Essential are aerobic exercises like walking or swimming, plus rest and stress reduction, maybe stretching, yoga, tai chi, massage or meditation.

Music therapy and acupuncture have also received accolades as being helpful. Some swear by coenzyme Q10. A healthy, balanced diet is key. Help can come through a variety of experts, like nutritionists, occupational or physical therapists, social workers, and especially a good neurologist who specializes in movement disorders.

The most common medication for Parkinson’s is levodopa, which your brain converts to the dopamine that it has stopped making. It may cause involuntary muscle movements and lose efficacy as years pass. It needs to be monitored closely by a good doctor.

Dopamine agonists like pramipexole (Mirapex) and ropinirole (Requip) mimic the effect of dopamine in your brain and may be prescribed in combination with levodopa. Side effects can include hallucinations, sleepiness, or supposedly, compulsive behaviors such as hypersexuality, gambling and eating. MAO B inhibitors, COMT inhibitors and anticholinergics may also be prescribed, along with other drugs specific to the symptoms. In some cases surgery in the form of deep brain stimulation (DBS) may be tried.

The word Parkinson’s comes from James Parkinson, a doctor who published a paper in 1817 on what he called “the shaking palsy.” While not directly fatal, the debility it causes can lead to dangerous falls or aspiration that leads to pneumonia or other illnesses.

But it’s a dodgy disease. About a quarter of diagnoses are incorrect, even from knowledgeable neurologists. So if you suspect that you or someone you love may have it, get checked out and seek a second opinion if you have doubts. And if you get a reliable diagnosis, please arm yourself with information and a battle plan to manage the malady.

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