You may have heard about a medications "off" time, but maybe you don't feel like you fully understand what it is? OFF time means when you have symptoms return or worsen as the effectiveness of the medication starts to wear off. These symptoms will improve after taking the next dose of medications. Almost 35% of people with Parkinson's experience OFF times, and this percentage increases with age. However, many don't fully understand what this means. In fact, a study examining peoples understanding of OFF times showed that even though 87% of people with PD said they understood that "wearing off" means, only 30% of them actually gave a correct answer.
Symptoms of OFF time
Increased tremor
Rigidity
Slowness of movement
Balance changes
Freezing
Anxiety and/or depression
Diffuse pain
Sweating
Fatigue
Apathy
It is important to note that the last few symptoms listed above are non-motor symptoms. Some people may only think of OFF times as increasing in motor symptoms. Non-motor symptoms can be dismissed or harder to recognize, so some people can be OFF without realizing it.
Communicating about OFF times
Firstly, some people may hide their symptoms because they think their PD is progressing and they are not ready to face it. Sharing these experiences with your health care provider is crucial to determine if you are experiencing OFF times versus a progression in disease.
Stories can be really helpful when trying to explain your symptoms. Share a real example of what happens like "I was feeling normal when I left for the concert, but halfway through the concert I felt like I was getting more rigid" or "I felt like I had a lot of energy when I started my day, but a few hours after I wake up sometimes I really have to take a nap."
Sometimes people can talk about their OFF times without actually saying the word off. Instead, they can talk about good days or bad days. This should clue you in that your loved one may be experiencing OFF times.
What can you do to reduce your OFF time?
Keeping a regular medication schedule.
This may sound simple and like a no brainer, but being as consistent as possible with what time you take your medication will help reduce OFF times. Sometime's this can be hard because your life does not run on the same schedule as your medications.
Do not take your medication on a full stomach.
You should take your medication one hour before a meal or two hours after a meal (some sources recommend at least 30 minutes for both before or after). If you are eating a protein rich meal, this may also impact the effectiveness of your medication. Talk with your neurologist if this applies to you.
Reduce constipation.
Because we ingest medication, it needs to go through our intestines before it gets into our blood and up to the brain. Constipation can impact how fast and how much of that medication gets ingested. Check out our blog post to learn more about how to reduce your constipation.
Talk with your doctor about changing your medication.
Overtime, your brain may produce less dopamine which means you may need to take more medication. Talking with your doctor about your current medication list and your symptoms is important to make sure you are getting the right dosage. There are options such as levodopa inhalers that are used just for OFF times. They give you just enough of a dosage to help you between doses and have been shown to improve motor symptoms in as soon as 10 minutes.
Keep a diary.
Write down the time of day when you take your Parkinson’s medication, when you feel like the medication is effective (reduction in symptoms), when you feel like your symptoms re-emerge, which symptoms re-emerge, if you have symptoms at night, if you have symptoms right when you wake up, or any other changes. This can help your medical team understand what treatment is right for you.
Manage stress.
Stress can be a big trigger of symptoms and can impact the effectiveness of your medication. Check out our blog post on stress to learn more about how you can reduce your stress.
Improve sleep.
Poor sleep can lead to a dysregulation of dopamine. Check out our blog post on sleep to learn more about how you can improve your sleep.
Exercise.
Exercise is medicine! Exercise can reduce your symptoms, help manage stress and anxiety, and will give you more energy long term. Talk with a health care professional about what type of exercise is right for you. Take a look at all the exercise classes in the Capital District!
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