Improving QoL in Patients with Parkinson Disease

Fernando L. Pagan, MD: Off episodes clearly affect the quality of life of our individuals, so in our particular example, our person with Parkinson’s disease is a teacher. She’s a third-grade teacher. If she has an off episode while she’s teaching, she can have difficulty carrying out her lecture. She may have more tremor, so writing on the board may be more difficult. Sometimes we see a smallness in handwriting, the micrographia. Speaking may be much softer during an off episode, so we can see a return or a worsening of hypophonia sometimes during these off episodes.

If somebody is working, the employment can definitely be hindered when there was a return of the Parkinson’s disease symptoms. I’ve had certain patients tell me that they go back to their offices and lie down on their couch for an hour while their off episode is occurring. They are sometimes praying the medicine kicks in as soon as possible, so they can get back to work and hopefully their boss won’t see that they’re lying down. These off episodes can clearly affect the employment of an individual.

It also affects the activities of daily living. I have patients who have gone out to restaurants, and they eat a high-protein meal, and now this interferes with their medication, especially the carbidopa-levodopa, and they’re frozen in their chair where they have been eating. Having an inhalation powder could be very beneficial to get them out of that restaurant within 10 minutes, and they may not make as big of a scene if they’re stuck there for about an hour or so waiting for the medicines to kick in. I’ve even had individuals who go to plays or movie theaters, and if they have inhalation powder, they’re able to get going again.

That trip to the Grand Canyon to take pictures may not be able to occur because of the off episodes, and that person may be less likely to enjoy their leisurely activities, especially since, sometimes, these off episodes can be very unpredictable.

These on-demand therapies are extremely helpful to give the quality of life back to our patients and for them to take control of these off episodes and stop them when they start feeling them coming on.

We as neurologists use the terms on and off, and I think our patients don’t necessarily know what on and off mean. Now is a great time to educate physicians, caregivers, and patients on better terminology to talk to one another or at least for us to educate them what on and off is. Our patients and caregivers talk about a return of symptoms, so there’s more tremor, rigidity, anxiety, mood irritability, sweats, a feeling of brain fog. These are the types of terms we hear from our patients and caregivers. When we hear these terms, when we hear return of the Parkinson’s disease symptoms, that’s what an off period is.

An on period is when the medicines are working. That’s when our patients feel the best. They sometimes feel like they don’t have Parkinson’s disease, and they can carry out all their activities of daily living. They can carry out their employment activities, etc. That’s really the most important thing: for us to teach one another the language that we each use. That way we can tell our patients and caregivers about what an on time is and off time is, so we can deliver the best medicines to be able to treat the symptoms. Overall, what we’re trying to do is improve the quality of life of our patients with Parkinson’s disease.