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Friday, April 14, 2017

3 Ways to Stay Positive Post-Diagnosis

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In the June/July 2017 issue, we look at the differences between how women and men experience neurologic disease and the subsequent emergence of sex-specific research. Understanding sex and gender differences may improve diagnosis, treatment, and outcomes for women. In this online exclusive, we address some of the psychosocial challenges women face after a diagnosis and how to manage them.


For women, who often serve as the emotional bedrock for their family and household, life may become extra challenging after a diagnosis of a chronic neurologic disease. Some families rise to the situation, while others struggle.

"Women [with neurologic diseases] don't always get the support they need from their spouses," says Maria De Leon, MD, a neurologist and movement disorders specialist in Nacogdoches, TX, and research advocate for the Parkinson's Foundation. "Women have higher divorce rates after being diagnosed with a neurologic disease. Their spouses say, 'This is not what I signed up for.'"

To counter the negative effects of a chronic neurologic condition, keep these strategies in mind.

Mind your health. Make taking care of yourself a top priority, even when you're juggling caring for children or elderly parents and perhaps working. That means getting enough sleep, eating well, exercising regularly, and finding ways to manage stress. "Taking care of yourself when you don't feel well can help make you feel better," Dr. De Leon says.

So can asking for help when you need it and recognizing (and honoring) your personal limits. Six months after the birth of her daughter in 2004, Stephanie Taylor, an author and high school teacher in Vancouver, WA, was diagnosed with MS. "I was lucky that I got a fast diagnosis, but I had an infant to care for as I navigated my first flare-ups," says Taylor. "My husband and I decided not to have more children because of my MS. I want to be there for my daughter and be the best and healthiest mom I can be."

Tell your doctor about side effects. Medication side effects aren't unique to women, but some may bother women more than they do men, says Dr. De Leon. For example, divalproex sodium (Depakote), pregabalin (Lyrica), and perampanel (Fycompa) can cause weight gain. "If a drug causes weight gain, some of my female patients are more reluctant to take it," says Jacqueline A. French, MD, FAAN, professor of neurology at the New York University Comprehensive Epilepsy Center and chief scientific officer for the Epilepsy Foundation. Similarly, hair thinning can occur with the anticonvulsant drugs levetiracetam (Keppra) and divalproex sodium, while others such as phenytoin (Dilantin) can cause excessive hair growth—side effects that may be unacceptable to some women.

If you experience these types of side effects and consider them intolerable, discuss them with your doctor to find ways to mitigate them. Your doctor might try another drug that can treat your condition effectively without causing those unwanted side effects.

Stay connected. Reach out to friends and extended family. It's important not to isolate yourself, even if some former friends can't handle your diagnosis.

After Carol Poole, who has early-stage Alzheimer's disease, told people about her diagnosis, some women in her social circle reacted badly and shunned her. "Some people seem to think it's contagious and don't want to have anything to do with me," says Poole, who used to be the president of several civic organizations. "They act as if I'm not here intellectually in the same way I once was. That's frustrating for me. Social engagement is so important because the more you withdraw, the more depressed you get." (This is a particular risk for women, since they are already more vulnerable to depression than men.)

Fortunately, Poole's extended family and some trusted friends rallied around, and she began participating in a support group for people with early-stage Alzheimer's disease once a month, which buoyed her mood. Joining a support group can make a significant difference. So can spending time with supportive friends and participating in interest-based social activities, whether it's joining a book club or volunteering at a museum or charitable organization.