When your Parkinson’s symptoms reappear or worsen, you are experiencing an OFF time.
That seems to be a simple enough definition of OFF; however, it’s anything but simple. That’s because understanding OFF times and being able to communicate about them are two very different things. And part of that is because the stakeholders in the Parkinson’s community—people with Parkinson’s, care partners and healthcare providers—don’t have a common, shared language for talking about OFF times.
And since nearly 35% of people with Parkinson’s experience OFF times (and this percentage increases with age), and OFF times can negatively impact quality of life in a myriad of ways, it’s important that an attempt is made to get everyone on the same page.
In a perfect world, there’d be a specific language that everyone agrees to and uses. For now, we hope to offer insight into how all three stakeholders define and communicate about OFF times and provide suggestions on how everyone invested can communicate more effectively, so the person with Parkinson’s is able to get the best care possible.
What does it mean to be OFF?
This can look very different for everyone. Here’s what it looks like for some:
- Reduced mobility
- Increased tremor
And then there are the non-motor symptoms such as:
- Diffuse pain
Essentially, whatever symptoms you’re using your meds to control will come back before it’s time to take your next dose.
Now, here’s why communicating about these symptoms as they relate to OFF times can be such a challenge.
Some people equate OFF times to times when motor-symptoms re-emerge, and they discount the non-motor symptoms that tend to be present more often than not during OFF times. So, they’re OFF, but they don’t realize it.
Some people with Parkinson’s experience an increase in motor symptoms and believe it’s a function of the progression of Parkinson’s rather than a result of their medication wearing off. They think there’s nothing they can do about it; so, they don’t share it with their healthcare providers.
Some people with Parkinson’s are inclined to report any symptom that brings them discomfort while others may find the same manifestation of a symptom not as uncomfortable and therefore don’t report. Part of this may be explained by the evidence that suggests that people with Parkinson’s who have accepted their diagnosis may adapt to OFF times more readily than those who haven’t. In any case, there are many people with Parkinson’s who are experiencing OFF times, but since they’re not reporting it, they’re not getting treatment.
Some may choose not to share any discomfort they’re having with their care partners because they don’t want to be a burden. OFF times then become ignored pieces of data that if communicated could be resolved.
Finally, some may feel terribly uncomfortable during OFF times, but they fail to share their symptoms with anyone because they think it might be a sign that their Parkinson’s is progressing, and they aren’t ready to face that. Refusing to talk about it, in this case, can act as a coping strategy.
How Parkinson’s Healthcare Providers Talk about OFF Times
There’s no one way that healthcare providers talk about OFF times because the types of doctors who work with people with Parkinson’s vary greatly.
On one end of the spectrum, a primary care doctor may be the only resource someone has in their local area, and this doctor may know very little about Parkinson’s. These doctors may use more broad terms like “breakthrough pain” to describe these periods of discomfort.
On the other end of the spectrum, there are movement disorder specialists (MDS) who specialize in Parkinson’s. They use language that is more particular, precise and Parkinson’s centric. For example, they will use the words ON and OFF exclusively when talking about times when medication is working or wearing off.
How People with Parkinson’s and their Care Partners Talk about OFF Times
People with Parkinson’s and their care partners often talk to their doctors about OFF times by telling stories. For example, “I was feeling great when we took off for the museum, but my hand started shaking really badly halfway through the tour.”
They may never use the word OFF and instead talk about good days and bad days.
They may use the word OFF as a descriptor rather than as a period of time: “John felt off today.”
In each of these scenarios, the person with Parkinson’s or the care partner is describing OFF times; however, since the language they use is more story-based and varied, their doctor—especially if he/she is overscheduled and pressed for time and not a Parkinson’s specialist—may miss what’s really going on.
Finally, and this may be the most critical one, is that they may lack a full understanding of what OFF even means.
The results of a multidisciplinary steering committee revealed that while 87% of people with Parkinson’s said that they understood what “wearing off” means, only 30% actually gave a correct answer when they were questioned further.
And, while 74% of care partners said that they understood what “wearing off” means, only 17% actually gave a correct answer when they were questioned further.
That’s a significant gap that needs to be bridged.
How do we bridge the gap in language and promote better treatment for people with Parkinson’s?
How Doctors Can Improve Communication about OFF Times
There are several actions Parkinson’s healthcare providers can take when it comes to educating and communicating about OFF times.
- When prescribing a medication, doctors should take time to describe ON and OFF times. Teach the person with Parkinson’s and their care partner that ON and OFF will be the language used to communicate about this, and it would be helpful for them to use it too so that each person understands what the other is talking about between and during appointments.
- Educate people with Parkinson’s and their care partners about the full spectrum of OFF symptoms and how they should consider motor and non-motor symptoms when they’re tracking their experiences throughout the day, especially when a medication is new, and their body is adjusting.
- Give them a handout they can take with them that reminds them of what to look for and how to track how they feel.
- Directly ask the person with Parkinson’s every time you meet about OFF times. For example,
Do you experience times of increased symptoms before you take your next dose of medication?
What symptoms? (remind them that non-motor symptoms count)
How long before you’re supposed to take your next dose do you start to experience symptoms re-emerging?
Does it happen every time? Can you think of anything that may make your symptoms worse aside from your medication wearing off? (e.g., diet, stress, travel, etc.)
If your medication does wear off, how does this impact your quality of life?
The reason it’s important for doctors to ask these specific questions during each visit is that people with Parkinson’s and their care partners may not be forthcoming about it. Not because they’re intentionally omitting information, but because there may be other issues that feel more pressing to address when they have so little time.
How People with Parkinson’s and their Care Partners Can Improve Communication about OFF Times
- Keep diaries of the medication schedule and use it to track symptoms. Be as detailed as possible with times, dose, etc. It’s best to have both people keep their own logs as they will often reveal different information.
- To the extent possible, go to doctor’s appointments together so the doctor can be given the full story—the one experienced by the person with Parkinson’s and the one observed by the care partner.
- Never assume that your doctor can guess what your symptoms are, or that you even have them. Doctors can’t read your minds, and they can’t guess what OFF looks like for you. Be proactive in sharing that information.
- Use the words ON and OFF when you’re discussing your medication times. And refer back to the language your doctor used when you were first prescribed your medication to stay consistent and increase your chances of being understood.
Do you have an OFF story to share?
This post is the third in a series about what it means to be OFF. (Here’s the first: Living with Parkinson’s: What is OFF? Here’s the second: Results of Our OFF Survey & Stories from Our Community)
If you have a story about OFF and what you’ve done on your own and with your doctor that has helped you to minimize or navigate these times, and you’d like to share it with us, please send us an email at firstname.lastname@example.org.
This post was written by the Davis Phinney Foundation.
This blog series is sponsored by Sunovion Pharmaceuticals Inc.