Working with Your Doctor with Parkinson's

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If you’ve been diagnosed with Parkinson’s disease, you’ll probably see your neurologist every 3 to 12 months, depending on how you’re doing and what your needs are. You may want to bring a family member with you to the appointment to take notes, ask questions, and provide support; having another set of eyes and ears in the room can help you recall key details later. Also, says Michal T. Gostkowski, D.O., a movement disorder neurologist at the Cleveland Clinic, “Give yourself plenty of time to get there because when you’re stressed, Parkinson’s symptoms can be worse.”

“Come prepared with notes and questions so you don’t leave the appointment wishing you had asked something,” advises Cindy Zadikoff, M.D., an associate professor of neurology at Northwestern Memorial Hospital in Chicago. During the visit, you’ll discuss how you’re feeling and functioning overall and how well your meds are working. Be sure to tell your doctor about all your symptoms — ongoing or new — as well as any specific concerns. “We will ask a lot of questions that don’t seem related to Parkinson’s — about your bowels, bladder, mood, and sleep — because those issues can affect your quality of life, and they often come with Parkinson’s,” Dr. Zadikoff adds.

Bring a list of all the prescription and over-the-counter medications and supplements you take, including when and how you take them (with food, for example). Some physicians prefer that patients bring the actual pill containers—along with any eye or ear drops or skin ointments you use — so they can get the full picture of what’s going on and be alert to potential interactions, says David Charles, M.D., professor and vice chairman of neurology at Vanderbilt University Medical Center in Nashville, TN. Some medications, such as eye drops used for glaucoma and some drugs used to treat high blood pressure associated with Parkinson’s, can have problematic interactions.

More questions

When it comes to drugs for Parkinson’s, “the doctor will want to know how well the medication is working for you. Are you able to do all the activities of daily living with minimal disability? If not, is the medication not lasting long enough?” Dr. Zadikoff says. For example, if you’re experiencing dyskinesia (involuntary movements) despite taking medication for it, your doctor may adjust the dose or the timing of when you take it. If dystonia (cramping of muscles) doesn’t resolve with medication, botulinum toxin injections may be an option.

Think ahead of time about how long the meds take to kick in, how you feel and function when they are working at their best, and any side effects you’re experiencing. Some medications (such as the dopamine agonists) can cause uncomfortable side effects like impulsive behavior. “It’s hard for a patient to come in and say, ‘Hey, doc, I can’t stop gambling,’ but we want to know if they’re experiencing side effects like those,” says Dr. Zadikoff.

Tests and suggestions

At each office visit, your neurologist will perform a physical and neurological exam to check your balance, muscle tone, and gait, and to look for tremors, stiffness in your muscles, and bradykinesia (slow movement). Your doctor will also discuss lifestyle measures that can improve your symptoms and ability to function. Sticking with a healthy diet that includes plenty of fruit, fiber, and water can help with constipation; if you’re experiencing lightheadedness, your doctor may advise you to up your salt and fluid intake, as long as it’s safe for you to do so.

With everyone who has Parkinson’s, “we stress the importance of exercise — including cardio, flexibility and stretching, and developing core strength,” Dr. Zadikoff says. “Exercise may also have diseasemodifying effects for Parkinson’s.” Aerobic exercise can improve collateral symptoms such as depression, anxiety, and constipation. Your doctor may be able to recommend an exercise program geared toward people with Parkinson’s, such as indoor cycling, boxing, or yoga.

If your voice is too soft or you’re having problems with clarity or swallowing, your doctor may prescribe speech therapy, physical therapy if your muscle tone and strength are low, or occupational therapy if it’s hard for you to perform activities like bathing or dressing. If you’re having significant depression or anxiety, your doctor may suggest seeing a psychologist or psychiatrist or prescribe medication.

For those with moderate to advanced Parkinson’s and motor symptoms that respond well to levodopa but are not adequately controlled with medications, or are having side effects from medications, surgery may be an option. But your symptoms need to have responded to levodopa for at least a few years for surgery to help, Dr. Gostkowski says. “Levodopa doesn’t help tremor all the time,” he explains, “and the meds may wear off in two to three hours.” At this point, there are two procedures for those with Parkinson’s: Deep brain stimulation and Duopa therapy. The latter involves insertion of an infusion pump, which delivers carbidopa/levodopa into the small intestine for 16 hours per day.

The best way you can help your doctor is to be as specific about your symptoms as possible. “Our goal is a functional one,” Dr. Zadikoff says. “We are not curing the disease — we are managing it and trying to help people live their best lives possible.”

Deep brain stimulation

With deep brain stimulation (DBS) surgery, electrodes are inserted into very specific structures in the brain associated with movement and a pulse generator (similar to a pacemaker) is placed under the skin below the collarbone to provide an electrical impulse, or stimulus. You have a controller to adjust the device or turn it off if needed. While there’s a risk that injury or bleeding in the brain can occur during the procedure, it’s quite small, Dr. Charles says. “DBS helps at least 80 percent of properly selected patients,” he says. Even after undergoing DBS, most people still need to take medication — but less, adds Dr. Gostkowski.

Action items:

  • Keep track of symptoms that have improved or appeared, and challenges you’re experiencing. “When patients are asked how they’re doing, the response sometimes reflects only how they’re feeling that day or what happened the night before,” Dr. Charles says.
  • Tell your doctor about any other conditions. Many Parkinson’s medications can interact with other drugs, so it’s crucial for your neurologist to know what else you’re being treated for. “We may need to talk to your other doctors,” says Dr. Zadikoff.

  • ’Fess up about any problems you’re having, such as with speech, balance, dressing, or walking. Problems with thinking and memory count too. You might well benefit from speech, physical, or occupational therapy. Ask your doctor for any necessary referrals.

  • Monitor your mood. Some changes in mood that may occur can be treated. In particular, leaving depression untreated robs the person of quality of life, Dr. Charles says. “We now have great medications for depression and many work well with Parkinson’s meds.”

  • Ask about virtual visits. Some doctors now offer virtual house calls to people with Parkinson’s. In a 2013 study, researchers from Johns Hopkins Medicine found that each telemedicine visit saved patients, on average, 100 miles of travel and three hours of time.