Talking to patients about OFF Episodes

Although most patients with Parkinson’s disease (PD) eventually experience OFF episodes,1 many patients don’t understand the ON/OFF phenomenon or can’t clearly articulate what is happening. They may use inconsistent language to describe their OFF episodes, which can create confusion and may prevent caregivers and clinicians from recognizing when a patient is actually experiencing an OFF.

Recognizing how patients might describe their OFF experience may help to bridge this communication gap.

Motor and non-motor symptoms of OFF episodes

An HCP may say: HCP describes OFF episodes

Both motor and non-motor symptoms may reappear before the next dose of levodopa is due.2

During an OFF, you might experience less obvious non-motor symptoms, such as mood changes, or fatigue, or anxiety.3

A patient with PD may say: Patients describe OFF episodes

I’ll start having tremors before it’s time to take my next dose, and then I can’t do some of my normal tasks at work.

When I have an OFF time, I forget things and it is very frustrating and unnerving.

Click on a topic below for more examples of how physicians and patients might be talking about OFF episodes.

Most common motor symptoms of OFF episodes4,5

WHAT AN HCP MAY SAY: What a patient with PD may say:
“Tremor”
“When I’m having an OFF time, my tremors get worse and I feel very self-conscious.”
“Stiffness/rigidity”
“I have to give up driving because I can’t predict when an OFF time might happen and my arms might stiffen up.”
“Dystonia”
“Sometimes when my medication starts to wear off, I’ll be walking and my body will twist and twist and I can’t stop it.”
“Postural instability”
“When I start to have symptoms before my next dose is due, I find that I’m no longer steady enough to play a round of golf.”
“Bradykinesia”
“When my meds take a while to kick in, everything—from getting out of the car to walking—just takes a long time.”

Most common non-motor symptoms of OFF episodes3,4

WHAT AN HCP MAY SAY: What a patient with PD may say:
“Anxiety/depression”*
*These symptoms may be pervasive and may heighten or worsen during an OFF episode.
“Sometimes, when my meds don’t seem to be kicking in, I’ve had panic attacks that come out of nowhere.”
“Fatigue”
“Sometimes I feel like I never slept.”
“Pain”
“My wife complains of persistent neck pain, not like a pulled muscle or cramp, because it never goes away.”
“Sweats”
“There are times that I wake up and I’m covered in sweat.”
“Cognitive impairment (slow thinking/cloudy thinking)”
“I tell my wife, ‘please, don’t ask me any questions in the morning.’ I’m in a fog for hours after I awake until it feels like my meds are starting to work.”
“Paresthesia”
“When I'm having an OFF time, I sometimes get a tingling feeling in my hands and feet.”

Medication not working

HCPs may be listening for: HCPs should also listen for:
A sense that medication isn’t working
Descriptions of OFF episodes that may not mention medication
“My medicine isn’t working as long as it used to.”
“Can’t move yet...”
“The medicine isn’t working as quickly as it used to.”
“Parkinson’s ‘rising up’/’breaking through’”
“My medicine doesn’t work as well during the middle of the dose.”
“Downtime”

Morning OFF

WHAT AN HCP MAY SAY: What a patient with PD may say:
“Morning OFFs could cause you to experience difficulties brushing your teeth, changing your clothes, or doing other morning activities.”6
“My morning OFF time is getting worse; every other day it seems like I need assistance from my wife to get going in the morning.”
“You may find that in the morning you feel frozen and have difficulties getting out of bed. This is because your levodopa dose has worn off during the night or your morning dose hasn’t kicked in yet. This is called a morning OFF.”6
“Right after I wake up, it doesn’t take long for my symptoms to reappear.”

Medication wear OFF

WHAT AN HCP MAY SAY: What a patient with PD may say:
“‘Wearing-off’ is the re-emergence of PD symptoms before the next scheduled medication dosage starts to work.”7
“It feels like my medication is wearing OFF before my next dose… I start feeling stiff and unable to focus on much.”
“As the PD progresses, you may experience ‘wearing OFF’ before your next levodopa dose.”6
“I feel as if the medication is draining out of my body.”

Unpredictable OFF

WHAT AN HCP MAY SAY: What a patient with PD may say:
“You may experience unpredictable OFFs without warning.”6,8
“Sudden anxiety takes over, and I’m never really prepared for it.”
“An unpredictable OFF could happen every now and then—you might, for example, start to struggle with movement.”6,8
“I feel like my medication stops suddenly.”

Partial ON / delayed ON / no-ON (dose failure)

WHAT AN HCP MAY SAY: What a patient with PD may say:
Partial ON
“You may not experience the full effect of your antiparkinsonian medication; we would call that a ‘partial ON.’ ”9
“You might need to add or increase my medication because I never really feel like it’s working all the way.”
“You may start to feel an ‘in-between feeling’ of being partially ON/partially OFF.”9
“Even after taking meds, I’m noticing that I’m still slow and can’t keep up. As if the meds never really took…”
DELAYED ON
“You might notice it may take a while for your symptoms to improve after you take a dose of levodopa—this is called a ‘delayed ON.’ ”8,10
“It feels like it’s a long time before a levodopa dose takes effect. How long should it take?”
“A delayed ON is the experience of a feeling a delay in the efficacy of the medication. For some people, it takes longer for antiparkinsonian medication to fully take effect.”8,10
“How will I know when the meds have kicked in all the way?”
No ON (dose failure)
“Sometimes even after you take the dose of medication that typically works for you, you may not experience any improvement in your symptoms. This is what we call a ‘no-ON.’ ”8,10
“Even after taking meds, I’m noticing that my symptoms are still there.”
“A dose failure occurs when a dose of antiparkinsonian medication does not elicit an ON for a patient with PD.”8,10
“I took the dose as prescribed. But it’s like the meds never really took…”

Most common motor symptoms of OFF episodes4,5

WHAT AN HCP MAY SAY:

“Tremor”

What a patient with PD may say:

“When I’m having an OFF time, my tremors get worse and I feel very self-conscious.”

WHAT AN HCP MAY SAY:

“Stiffness/rigidity”

What a patient with PD may say:

“I have to give up driving because I can’t predict when an OFF time might happen and my arms might stiffen up.”

WHAT AN HCP MAY SAY:

“Dystonia”

What a patient with PD may say:

“Sometimes when my medication starts to wear off, I’ll be walking and my body will twist and twist and I can’t stop it.”

WHAT AN HCP MAY SAY:

“Postural instability”

What a patient with PD may say:

“When I start to have symptoms before my next dose is due, I find that I’m no longer steady enough to play a round of golf.”

WHAT AN HCP MAY SAY:

“Bradykinesia”

What a patient with PD may say:

“When my meds take a while to kick in, everything—from getting out of the car to walking—just takes a long time.”

Most common non-motor symptoms of OFF episodes3,4

WHAT AN HCP MAY SAY:

“Anxiety/depression”
*These symptoms may be pervasive and may heighten or worsen during an OFF episode.

What a patient with PD may say:

“Sometimes, when my meds don’t seem to be kicking in, I’ve had panic attacks that come out of nowhere.”

WHAT AN HCP MAY SAY:

“Fatigue”

What a patient with PD may say:

“Sometimes I feel like I never slept.”

WHAT AN HCP MAY SAY:

“Pain”

What a patient with PD may say:

“My wife complains of persistent neck pain, not like a pulled muscle or cramp, because it never goes away.”

WHAT AN HCP MAY SAY:

“Sweats”

What a patient with PD may say:

“There are times that I wake up and I’m covered in sweat.”

WHAT AN HCP MAY SAY:

“Cognitive impairment (slow thinking/cloudy thinking)”

What a patient with PD may say:

“I tell my wife, ‘please, don’t ask me any questions in the morning.’ I’m in a fog for hours after I awake until it feels like my meds are starting to work.”

WHAT AN HCP MAY SAY:

“Paresthesia”

What a patient with PD may say:

“When I'm having an OFF time, I sometimes get a tingling feeling in my hands and feet.”

Medication not working

HCPs may be listening for:

A sense that medication isn’t working

HCPs should also listen for:

Descriptions of OFF episodes that may not mention medication

HCPs may be listening for:

“My medicine isn’t working as long as it used to.”

HCPs should also listen for:

“Can’t move yet...”

HCPs may be listening for:

“The medicine isn’t working as quickly as it used to.”

HCPs should also listen for:

“Parkinson’s ‘rising up’/’breaking through’”

HCPs may be listening for:

“My medicine doesn’t work as well during the middle of the dose.”

HCPs should also listen for:

“Downtime”

Morning OFF

WHAT AN HCP MAY SAY:

“Morning OFFs could cause you to experience difficulties brushing your teeth, changing your clothes, or doing other morning activities.”6

What a patient with PD may say:

“My morning OFF time is getting worse; every other day it seems like I need assistance from my wife to get going in the morning.”

WHAT AN HCP MAY SAY:

“You may find that in the morning you feel frozen and have difficulties getting out of bed. This is because your levodopa dose has worn off during the night or your morning dose hasn’t kicked in yet. This is called a morning OFF.”6

What a patient with PD may say:

“Right after I wake up, it doesn’t take long for my symptoms to reappear.”

Medication wear OFF

WHAT AN HCP MAY SAY:

“‘Wearing-off’ is the re-emergence of PD symptoms before the next scheduled medication dosage starts to work.”7

What a patient with PD may say:

“It feels like my medication is wearing OFF before my next dose… I start feeling stiff and unable to focus on much.”

WHAT AN HCP MAY SAY:

“As the PD progresses, you may experience ‘wearing OFF’ before your next levodopa dose.”6

What a patient with PD may say:

“I feel as if the medication is draining out of my body.”

Unpredictable OFF

WHAT AN HCP MAY SAY:

“You may experience unpredictable OFFs without warning.”6,8

What a patient with PD may say:

“Sudden anxiety takes over, and I’m never really prepared for it.”

WHAT AN HCP MAY SAY:

“An unpredictable OFF could happen every now and then—you might, for example, start to struggle with movement.”6,8

What a patient with PD may say:

“I feel like my medication stops suddenly.”

Partial ON / delayed ON / no-ON (dose failure)

WHAT AN HCP MAY SAY:

Partial ON

“You may not experience the full effect of your antiparkinsonian medication; we would call that a ‘partial ON.’ ”9

What a patient with PD may say:

“You might need to add or increase my medication because I never really feel like it’s working all the way.”

WHAT AN HCP MAY SAY:

Partial ON

“You may start to feel an ‘in-between feeling’ of being partially ON/partially OFF.”9

What a patient with PD may say:

“Even after taking meds, I’m noticing that I’m still slow and can’t keep up. As if the meds never really took…”

WHAT AN HCP MAY SAY:

DELAYED ON

“You might notice it may take a while for your symptoms to improve after you take a dose of levodopa—this is called a ‘delayed ON.’ ”8,10

What a patient with PD may say:

“It feels like it’s a long time before a levodopa dose takes effect. How long should it take?”

WHAT AN HCP MAY SAY:

DELAYED ON

“A delayed ON is the experience of a feeling a delay in the efficacy of the medication. For some people, it takes longer for antiparkinsonian medication to fully take effect.”8,10

What a patient with PD may say:

“How will I know when the meds have kicked in all the way?”

WHAT AN HCP MAY SAY:

No ON (dose failure)

“Sometimes even after you take the dose of medication that typically works for you, you may not experience any improvement in your symptoms. This is what we call a ‘no-ON.’ ”8,10

What a patient with PD may say:

“Even after taking meds, I’m noticing that my symptoms are still there.”

WHAT AN HCP MAY SAY:

No ON (dose failure)

“A dose failure occurs when a dose of antiparkinsonian medication does not elicit an ON for a patient with PD.”8,10

What a patient with PD may say:

“I took the dose as prescribed. But it’s like the meds never really took…”

References

  1. Hametner E, Seppi K, Poewe W. The clinical spectrum of levodopa-induced motor complications. J Neurol. 2010;257(suppl 2):S268-S275.
  2. Chou KL, Stacy M, Simuni T, et al. The spectrum of "off" in Parkinson's disease: What have we learned over 40 years? Parkinsonism Relat Disord. 2018 doi: 10.1016/j.parkreldis.2018.02.001. [Epub ahead of print]
  3. Martínez-Fernández R, Schmitt E, Martinez-Martin P, Krack P. The hidden sister of motor fluctuations in Parkinson's disease: A review on nonmotor fluctuations. Mov Disord. 2016;31:1080-1094.
  4. Fahn S. Parkinsonism: clinical features and differential diagnosis. In: Fahn S, Jankovic J, Hallett M, eds. Principles and Practice of Movement Disorders. Amsterdam, Netherlands: Elsevier Ltd Inc, BV; 2011.
  5. Hou JG, Lai EC. Non-motor symptoms of Parkinson's disease. Int J Gerontol. 2007;1:53-64.
  6. Obering CD, Chen JJ, Swope DM. Update on apomorphine for the rapid treatment of hypomobility (“off”) episodes in Parkinson's disease. Pharmacotherapy. 2006;26:840-852.
  7. Jankovic J. Motor fluctuations and dyskinesias in Parkinson’s disease: clinical manifestations. Mov Disord. 2005:20(suppl 11):S11–S16.
  8. Olanow CW, Stern MG, Sethi K. The scientific and clinical basis for the treatment of Parkinson disease. Neurology. 2009;72(suppl 4):S1-S136.
  9. Reimer J, Grabowski M, Lindvall O, Hagell P. Use and interpretation of on/off diaries in Parkinson's disease. J Neurol Neurosurg Psychiatry. 2004;75:396-400.
  10. Adler CH. Relevance of motor complications in Parkinson's disease. Neurology. 2002;58(4 suppl 1):S51-S56.