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Results of Our OFF Survey & Stories from Our Community

results-of-our-off-survey-stories-from-our-community

Results of Our OFF Survey & Stories from Our Community

Over the past month, we’ve been collecting and analyzing results from the survey about OFF that we shared with you. (It’s not too late if you want to share your experiences, too.)

With over 1600 responses received (48.22% female, 51.53% male), here are some of the most interesting data we collected.

The most troublesome aspects of OFF include:

  • Having symptoms return or worsen as medication begins to wear off and having symptoms improve after taking the next dose of medication (59.88%)
  • Experiencing fluctuations in cognition, attention, anxiety, depression and/or apathy during the day (32.77%)

Troublesome Aspects of Off - Davis Phinney Foundation

Eighty-two percent experience OFF times sometimes or often.

Experience of OFF - Davis Phinney Foundation

Just over 40% say that their OFF times are moderately severe.

Severity of OFF - Davis Phinney Foundation

Fifty-six percent say that they can predict their OFF times a little bit or not at all. They also commented that this is probably the most frustrating part about OFF.

Predictability of OFF - Davis Phinney Foundation

Thirty-five percent say that they discuss their experiences of OFF with their doctors either rarely or never.

Discuss OFF with doctors - Davis Phinney Foundation

And finally, 76.57% say that when they talk to their doctors about OFF times, they are satisfied or very satisfied with their clinician’s recognition and understanding of their experience.

Satisfied with doctor responses - Davis Phinney Foundation

The final two data points are perhaps the most actionable of all. Over three-fourths of the people surveyed said that when they talk to their doctors about their OFF periods, they are satisfied with the result. And yet, there is still over 35% that rarely or never talk to their doctors about it.

If you fall into that 35%, what might happen for you if you share more of your OFF experiences with your doctors? Even if it’s a difficult conversation to have, it might very well be the difference between receiving so-so treatment and receiving the very best possible.

What have you learned about OFF lately? Either generally or as it relates to your specific experience? (Share in the comments or email us at blog@dpf.org.)

 

Reader Stories About OFF

In addition to the data we received from the survey, we also received many emails from people who were kind enough to share their OFF experiences with us. We’d like to share these in the hopes that reading about what others are going through may be useful to you.

“Being OFF stinks. It isn’t always completely debilitating for me but can still be enough to make it difficult to work or enjoy hobbies. In order to minimize OFF times, I always keep a journal and take it with me to my appointments. It serves as a great reference to help me and my movement disorder specialist (MDS) find the optimum treatment plan!! My advice when it comes to talking to your doctors about OFF: Don’t hide anything from them. Be completely open. That’s how you get the best care.”

Darryn W., Diagnosed three and a half years ago at the age of 44

 

“I’ve had Parkinson’s for 10 years. I’ve experienced OFF in varying degrees over most of this time. I can forecast quite accurately when my next OFF time will occur hours before onset. And I know very well what OFF feels like and about how long it will last.

At various times, I find these OFF times to be annoying, maddening, highly challenging, instructive, insightful, humbling or appreciation-inducing. Perhaps above all, OFF is fascinating.

Why fascinating? Because what happens when I’m OFF doesn’t always make sense.

For example…

  • Why am I able to walk well outside but then freeze going through a doorway inside?
  • Why can I run smoothly but barely walk?
  • Why am I able to provoke walking through cues or disruptions?
  • Why is it that when I’m able to trust in my body and put full faith into a higher power that my gait leaves the OFF state?
  • Why is it that sometimes putting all of my intentions on my OFF state increases my performance while other times giving my mind another task to do or giving into a distraction is what increases it?

Parkinson’s in general and OFF specifically are strange creatures indeed.

ON is nice. It allows me to live somewhat similar to how I lived prior to my Parkinson’s diagnosis.

But OFF times add interest. Unquestionably challenging, OFF almost always adds to the sensation of life. It reminds me that I’m still alive.

Having OFF times means, by definition, there must be ON times as well. All of the mystery and malleability of the OFF state gives me hope for future adaptation, future solutions.

My OFF times have more force this year than they did last year and are highly likely to be more difficult next year than this. Nevertheless, I’m managing to be more grateful for what I’m still blessed to have and less resentful for what I no longer do.”

Gavin Mogan, Living with Parkinson’s for 10 years

 

“I lived with Parkinson’s for six years before I underwent Deep Brain Stimulation (DBS) surgery. (I was the first person in the US to be implanted with the Abbot DBS system.) DBS eliminated my OFF times, and it gave me my life back in many ways.

Unfortunately, about a year and a half into having it, we discovered a benign cyst had formed on my brain so I had to get the lead removed. I went from taking six tablets of carbidopa/levodopa when on DBS to taking 30 pills a day when it was taken out. Now I consistently experience 15 minutes of OFF before my next dose and then 15 more minutes before it kicks in. This has definitely effected my daily life. Now I need two naps a day, I have to go to bed earlier and I can’t do all of the activities I used to do. Fortunately, I’m getting the leads reimplanted this month.

For those people who experience OFF times, my recommendation is to be timely with medications no matter what. Set alarms. If you have a care partner, get them on board to remind you. You might still experience OFF times; however, if you stay on top of your medications, you can make them as predictable as possible.”

John Alexander, Davis Phinney Foundation Ambassador 

 

Do You Have an OFF Story to Share?

This post is the second in a series about what it means to be OFF. (Here’s the first: Living with Parkinson’s: What is OFF?) 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 blog@dpf.org.

This post was written by the Davis Phinney Foundation.

This blog series is sponsored by Sunovion Pharmaceuticals Inc.
Sunovion

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