When Baltimore-area attorney Leonard Schwartz was first diagnosed with Parkinson's disease in 2003, at the age of 43, he was prescribed levodopa and carbidopa (Sinemet) and responded well. “It suppressed the tremors and restored my ability to move,” he says.
But as the disease progressed, more symptoms cropped up, including trouble swallowing. He eventually developed aspiration pneumonia, in which food or saliva is breathed into the lungs instead of being swallowed in the esophagus and stomach. “I had to take more and more medications in different forms,” he says. “Right now, I'm in a clinical trial for a medication that's administered under my skin through a pump, and it seems to be working very well.”
But along with various symptoms and medication side effects, ranging from tremors and dyskinesia (involuntary muscle movements) to depression and anxiety, he's also grappling with another problem: weight loss. Taking dopamine-based drugs too soon before or after eating—especially protein-rich foods—can interfere with the drug's absorption, as the drug and the protein battle to be taken up into the bloodstream. “It's like a blockade,” says Schwartz. “And the absorption rate of the medication can be variable, so it's hard to plan my meals exactly. I find myself thinking, ‘I want the medication to work, so maybe I'll just skip lunch.’”
Levodopa is absorbed through the same mechanism as large neutral amino acids—the building blocks of proteins, which are primarily found in meats. “Early on in the disease, you have more of an ability to store dopamine, so there may not be as much interference from protein. But as the disease progresses, when you eat and what you eat has more of an effect on your levels of levodopa,” explains John Eric Duda, MD, director of the Parkinson's Disease Research, Education, and Clinical Center at the Philadelphia VA Medical Center and associate professor of neurology at the University of Pennsylvania's Perelman School of Medicine.
“When these motor fluctuations appear and when medications wear off before the next dose or don't kick in as well, we recommend patients try eating protein at different times during the day,” he says. “For example, they might eat little or no protein at breakfast and lunch, so the food isn't competing with the levodopa during the day. Then, at night, they can eat most of their protein when they won't be moving around as much and then will be sleeping.”
Like Schwartz, many people with chronic neurologic diseases struggle with weight management. Disease progression, medications, and related symptoms and conditions such as depression can contribute to weight loss or gain. Finding effective strategies to stay at a healthy weight—or adjust to a new one—is one of the challenges of living with a neurologic disease.
People with Alzheimer's disease often lose interest in eating as the disease progresses. Those with amyotrophic lateral sclerosis (ALS) gradually lose the ability to swallow due to atrophy and spasticity in the muscles of the throat. People with cerebral palsy may have poor motor control of the muscles needed for swallowing, which may lead to weight loss; those with Charcot-Marie-Tooth (CMT) disease, a hereditary neuropathy that causes muscle wasting, may also experience weight loss.
“I'm 5′6” and I weigh 118 pounds and I exercise a lot, but the muscles in my calves are being replaced with fat as the disease destroys them,” says Susan Ruediger, director of development for the CMT Association, who was first diagnosed with the disease at the age of 18 months.
“A lot of people with CMT are self-conscious about it,” she says. “Many of us are ‘sticky,’ with thin, atrophied arms and legs. We look like skin and bones. For instance, I don't wear skirts or shorts anymore, just because my legs are so skinny. We also find it difficult to exercise to try to maintain the muscles we do have and keep our bodies healthy, so we have to be creative about it.” Ruediger, for example, has switched from exercising outdoors to swimming. (The CMT Association offers an exercise video series at http://bit.ly/CMT-Exercise and a CMT Athletes Facebook group for anyone with the condition who aspires to become more active.)
EPILEPSY UPS AND DOWNS
Epilepsy and the drugs used to treat it can cause both weight gain and weight loss. For example, women with epilepsy have higher rates of polycystic ovarian syndrome, a condition associated with increased weight around the midsection. Certain medications for epilepsy can add weight, too. “While several epilepsy medications cause weight gain, valproic acid [Depakote] is the most extreme, with people gaining as much as 100 pounds on the drug,” says Jacqueline French, MD, FAAN, professor of neurology at the Comprehensive Epilepsy Center at NYU Langone Medical Center and chief scientific officer for the Epilepsy Foundation.
Conversely, antiepileptics such as topiramate (Topamax), zonisamide (Zonegran), and felbamate (Felbatol) can lead to weight loss, says Dr. French. “It's like Alice in Wonderland, with drugs that make you larger and drugs that make you smaller.”
MEDICATIONS THAT PACK ON POUNDS
Many neuromuscular and autoimmune diseases are frequently treated with steroids, which boost appetite, promote fluid retention, and change how the body processes carbohydrates—all of which contribute to weight gain. Children and young adults with Duchenne muscular dystrophy, for example, who are treated with high doses of steroids for years, are often overweight and have weight-related medical complications, says Michael K. Hehir, MD, associate professor of neurology at the University of Vermont in Burlington. “A lot of the weight gain is the result of those drugs' appetite stimulation,” he says.
Relapses and exacerbations of multiple sclerosis (MS) are also frequently treated with three to five days of glucocorticoids, a type of steroid. “People can easily put on 15 pounds in two weeks,” says Kathy Costello, MS, ANP-BC, MSCN, associate vice president of clinical care at the National Multiple Sclerosis Society. “The fluid retention element of that will go away, but it can take time to shed the other weight,” she says.
Weight gain is also a common side effect of other medications such as pregabalin (Lyrica) and gabapentin (Neurontin), which are often prescribed to treat neuropathic pain in MS, fibromyalgia, and peripheral neuropathy.
Symptoms such as fatigue, impaired mobility, depression, and anxiety often intertwine to contribute to weight gain. People who are tired or can't move easily may become more sedentary and may consume more calories than they burn off, says Costello. “Depression and other mood disorders can have a huge effect on appetite, leading people to eat more—sometimes less, as well—and choose foods that might not be healthy.”
Many people with neurologic conditions are restricted in how much they can exercise. For example, people with spinal cord injuries or who are otherwise confined to a wheelchair may have trouble exercising adequately. People with uncontrolled epilepsy are cautioned against running on a treadmill or swimming laps. And vigorous exercise can worsen the symptoms of myasthenia gravis.
It may seem that the odds are stacked against you, but experts say these strategies will help keep your weight in the healthiest range possible for you.
1 TALK TO YOUR DOCTOR. Don't ignore signs of weight loss or weight gain. You'll need help from your doctor to nip both in the bud. Weight loss can lead to falls, frailty, and worse progression of your disease, says Dr. Duda. Weight gain can cause other medical complications such as diabetes and heart disease, says Dr. Hehir. In either case, be sure to discuss the topic with your doctor as soon as you notice any weight fluctuations.
2 MANAGE MEDICATIONS. If a drug is causing weight fluctuations, talk to your doctor about switching to a different drug or having the dosage adjusted, says Dr. French. “Your doctor should be watching you carefully for changes in weight, and if it reaches a certain point, such as a fluctuation of more than 15 pounds, you may consider changing to a different medication. We can also change dosages or shift to a sustained-release drug, which some physicians think contributes less to weight loss than short-acting formulations.”
3 BRAINSTORM WEIGHT MANAGEMENT STRATEGIES. “If your doctor is putting you on a new medication, talk to him or her about its effects on weight,” says Dr. Hehir. “With steroids, for example, if you know that your appetite is going to increase, you and your doctor can come up with strategies to manage that side effect, such as devising an eating plan that emphasizes nutrient-rich foods that are less caloric.”
Leonard Schwartz, who has trouble keeping weight on, has learned to get his protein from beans and fish rather than red meat, which he has found causes more interference with his medications. He also eats smaller meals throughout the day and makes sure to have a place to sit calmly for meals where he won't be overstimulated and distracted from eating.
4 GET NUTRITIONAL HELP. Ask your neurologist if there is a program in your area that offers counseling with a trained nutritionist who has specific expertise related to your disease. “You want someone who can design an affordable, healthy diet that you're able to prepare,” says Costello. “Some universities have schools of nutrition or integrative medicine that offer faculty/student practices where you can see a nutritionist at far less cost than a nutritionist in private practice.” And many patient orgnizations, such as the Epilepsy Foundation, the National Multiple Sclerosis Society, and the Parkinson's Foundation, have specialized nutritional information available on their websites.
5 FIND WAYS TO MOVE. You may not be able to exercise the way you did before your condition progressed, but that doesn't mean you have no options. If you have epilepsy, for example, you could switch from an upright bicycle to a recumbent stationary bike at the gym and replace heavy free weights (which could injure you if you dropped them during a seizure) with resistance bands and body-weight exercises like lunges and squats. A physical therapist or trainer at the nearest medical center can help design a program that works for you. (For information about how boxing can help those with Parkinson's disease—even people in wheelchairs—visit http://bit.ly/NN-OnTheRopes.)
6 DON'T GIVE UP. For Susan Ruediger, who has CMT, pain is an obstacle to exercise, but she powers through her swims knowing that it has long-term benefits. “If you can commit to regular exercise, you will feel so much better,” she says. “You'll stay stronger longer if you keep moving.” She encourages people to look for modifications—everything from wrist supports to help you lift weights to adaptive devices that can help you move—so that you can keep exercising, no matter what your physical condition is.
7 STAY POSITIVE. In some cases, despite everything people do, their weight will not return to the way it was before. That was the case for a young dancer who is a patient of Dr. French's. The dancer's frequent seizures cannot be treated by surgery and only respond to valproic acid. “The drug keeps her completely seizure free, but she has gained 50 pounds,” says Dr. French. “We have had many discussions as she has come to accept her new body as necessary for the benefit of having no seizures. Although she no longer dances, she has found a new creative career that she loves and has channeled her energies into that.”
Despite your best efforts, things sometimes don't turn out as you anticipated, says Costello. “It's important to understand that change may come slowly and may not ever be as much as you want. If you're taking charge of your nutrition and your physical activity, then you're doing the right thing. Focusing on your overall health is always a better goal than obsessing about the numbers on the scale.”