Expert neurologists comment on the impairment of OFF episodes on quality of life for patients and their caregivers.
Sanjay Iyer, MD: It’s also important to talk about what is the burden of OFF episodes. You and I don’t feel it, we don’t live it. But at the same rate, when you query the patients about what are you able to do and not do during an OFF episode, some folks say, “Well, it’s not too bad, my hand shakes a little more, nothing terrible.” But other folks, they can’t walk, they’re frozen, they feel awful, they feel anxious, they’re sweating, all those things. They don’t want to go places, really the impact on their quality of life and on their families as well can be astounding. It’s important, if we pay attention to how it impacts them, that really tells us we need to help these patients, empower them to learn about various ways to mitigate their OFF.
Laxman Bahroo, DO: Absolutely, that’s a good point. If you had to flag one component of, when do I treat OFFs? Well, if it’s bothering the patient, then we treat it, or we offer treatment much more readily, and patients are more ready accept those for the most part. And what bothers individuals varies. If you have a 48-year-old, 50-year-old, active person who works 4 days a week, 5 days a week, their threshold for what’s bothersome for their OFFs is much, much lower. They’re going to jump immediately to treat every OFF because it’s going to interfere with their activities, and also they want to be as close to their peers who don’t have Parkinson disease. As opposed to the 68-year-old who’s retired and has 1 or 2 social meetings a week, is for the most part less active, maybe has a physical therapy class or group, and they might have a higher threshold, saying, “This is mild, I can work around it.” The customization is important, does it bother you or your family members, what can you not do? That’s a good way to ask, “What does it impair you from doing?”
Transcript Edited for Clarity