Many Parkies use the words “on” or “off” when describing their Parkinson’s disease (PD) medication. The term “on” relates to if your medication is effectively working within your body and your symptoms are under control. Similarly, if your medications are “off”, you’re not feeling the effects of the medication. This can be called a “dose failure” and is usually due to poor absorption of the drug. Many of us hide in our homes or under a rock, just waiting for our medications to come “on”… just like a light bulb. We sit in the dark until the space surrounding us starts to brighten. Unpredictable absorption of PD medications can make it challenging to make any type of plans during the day, because as many Parkies know, every hour can be different.
Now before I go any further, please read the following disclaimer from my legal department:
*All events or experiences described in this blog are solely based on Perky Parkie’s life adventures. And while some Parkies might have similar events, we are all snowflakes and no individual can replicate her exact experiences. Besides, who would want to? She is a bit nutty. Furthermore, although freakishly smart, Perky is unable to diagnose, treat or predict the progression of any individual’s Parkinson’s disease. Seek the advice of a Movement Disorder specialist, because that’s why they get paid the big bucks. By continuing to read this blog, you are agreeing to the above disclaimer and the responsibility of enabling Perky’s addiction to Fro Yo.
So with the legalities out of the way… what does it feel like to be “off”? Being “off” to me, feels like everyone is looking at me like the big pink elephant in the middle of the room. And I’m not talking about a cute, pale pink, rub its trunk for good luck, I barely noticed it was there, kind of elephant. Nope. I am talking about a hot pink, sparkles that blind, stampeding through the room, kind of elephant. I feel anxious as thoughts go through my head such as, “They can tell I am struggling. Where is my Sinemet? I am not making any sense when I speak. This sucks.”
I can get obsessive when having to make a decision. “Maybe I should get bubble gum, no I should get sugar-free spearmint. Hmmmm, maybe something fruity… wait, cinnamon sounds yummy. Why is that dude staring at me? Choosing the perfect gum to coordinate perfectly with my mood is a serious decision.” This scene is playing out in the grocery store all while I’m sweating profusely like I have Malaria.
If that doesn’t sound like a cavalcade of fun, throw some emotional instability into the mix. When my meds are “off” I feel like the zombie apocalypse is imminent. The end is near, and I am feeling every emotion on the bipolar spectrum. I will laugh at inappropriate times, or cry for the tiniest thing. Don’t I sound fun to hang out with?
Now those were all the cognitive things going on in my (slightly larger than most people’s) brain. But what does it look like from the outside? When I am “off”, even the slightest task can become a chore. I am slow and rigid. I have trouble moving, showing emotion and even speaking. Finding the right words can be challenging, most of my energy goes into trying to complete daily tasks without getting stuck obsessing about an insignificant detail. This video is an example of me when my medications are not working. Please keep in mind, that this not my typical day. But a huge part of my blog is showing my life with Parkinson’s disease. This includes the raw, unfiltered challenges I face, but also the goofy adventures of my journey.
One thing that Parkinson’s has not impacted is my sense of humor and that helps me get through the tough times. So be sure you subscribe to my blog, because next week I will show you what it feels like to be “on” and I will give you a hint, it may or may not include me dancing with my dog Crash.
I’ve just turned 40, diagnosed almost 3 years ago. I’m not yet on medication and that video is ME! I’d love to see a clip of you at your best doing the same task. LOVE your work!
Ask and you shall receive! I’m making a blog right now with video of me with my meds on. Being so young is difficult, but you’re not alone. Thanks for your comment!
watching the short clip at the end of this blog I recognised myself (except with honey not nutella). As of yesterday I am on Sinemet. Hope I speed up a bit.
Thank you for having put this into words in your comedic way for those of us who have attempted to explain this to others without success. Other than my being a man and your “FroYo” addiction, this really describes my life and off times perfectly. I know the sinking feeling of leaving home and thinking I forgot my Sinamet. I have searched my truck for that one pill that I dropped days ago. I can also relate to the difficulty in making plans. I seldom tell anyone that I will definitely be somewhere anymore. I say, “It will be a surprise if I show up.” Haha
Isn’t it nice to know that you’re not alone? Speaking like a true addict… You should really try fro yo!
It really is nice, thank you. I have to confess I have a milkshake addiction, but I will try fro yo the next time I go to town!
First step is admitting you have a problem! Congratulations! Thanks for your comments.
This was good to read as always. And as always your upbeat attitude makes my own preoccupations so much lighter.
I just started on a low dose of Sinemet and wonder, in my own blog (http://www.parkingsuns.com/2015/08/28/sinemet-romance/), if the drug is turning into a part-time lover. It’s strange to experience the on/off cycle for the first time. I am in full admiration of your hip, experienced, eloquent take on this.
Best wishes to everyone.
I am now 58 with 18 years and counting with having PD. I sometimes have a hard time remembering life without PD and a harder time believing that there even was life without PD. It is simply just life as I know it. When the “offs” hit one minute can seem like one hour and when the “ons” kick in one hour can go by like one minute. The “offs” are obviously the hard part of dealing with PD; they can be maddening, frustrating, embarrassing, etc. Allison’s description is once again right on (or should I say off?) . A sense of humor, along with family support and a strict workout regimen, has done more good for me than any drug has. It took me awhile to accept having PD and I’ve learned to deal with it, but I have never given up hope, for I believe a cure will come during my lifetime and after what I’ve been through, I want the satisfaction of seeing this beast beaten. I believe in and live by the words of the late, great Jin Valvano – “Don’t Give Up, Don’t Ever Give Up”. Thank you Allison for bringing to light some of our darkest moments. You are indeed a lighthouse in the Sea of PD.
Such a sweet comment! Thank you for taking the time to write it!
Such a perfect description of “off-times”. I know that pink, sparkling, stampeding elephant too well. Very good read as usual. Thank you.
I absolutely love your blog! I was diagnosed with PD when I was 34. That was almost 4 years ago. I can relate to everything you go through. I love that you have such a great attitude and sense of humor.
A Young Onset just like me! Welcome to the club! I was diagnosed at age 32… we should have a secret handshake or something.
My husband has PD,and you made us laugh. Thank you for putting into words,how off times are. It helped give me insight,into what he has to deal with. Love your sense of humor!
Another stellar post and a fun blog to follow. I often don’t always have a comment ready but its entertaining, to me at least because you speak to what I’m feeling like and that resonates. Keep blogging, you are making a difference in parkies lives everywhere.
So Nutella is not only a matter of taste but also a state of mind! Got it. Next “off” I’m reaching for the whole jar with my soup spoon (carries more to my face) Thank You
gostei muito do video, eu fico assim tambem quando em “off. Tudo em camera lenta. Melhor definição de ‘ON” “OFF” que ja li.
Thank you Google Translate! I am not well versed on Portuguese. Thank you for your comment! Happy to hear that my blog has helped understand what it’s like to have fluctuations in PD medications.
thank you for sharing your story … also have PD and reading what you write and seeing your videos, encourages me to face and lose the shame. Thanks
There is no shame in Parkinson’s. You did nothing to bring this onto yourself. Be a proud Parkie! You have a great community of people that are all going through similar experiences… you are not alone!
Thank you. Thank you very much
Bravo Allison!! I’m really in awe of of your seamless shift from factual to downright hilarious! Never fails to amaze – you go girl!
Thank you Lisa!
You should win a Pulitzer for this post. Best description of off time ever!!
And the award goes to….
Perky,
So you’re a fan of Nutella as well! My favorite comfort food!
I like this post as it may help those without PD understand what being “off” means. The video will certainly help if your description doesn’t. ..a question about the video – in addition to the meds not working was your neurostimulator off? If not, what happens when it is off AND the meds aren’t working? (I’m having DBS surgery next month so am interested in knowing what your experience has been).
Keep up the good work and your sense of humor. It’s greatly appreciated and has made me a regular reader of your blog.
John
HI John,
My DBS is never turned off. That was a really bad morning, so it is not typical. We must remember that DBS isn’t a cure but compliments medications well. I take significantly less PD meds and my “on” time is extended. Good luck with your DBS surgery! It has been a huge help in my life.
Thanks, Perky. I’ll let you know how it turns out.
Ms. Perky, I love reading your blog. You have a delightful way with words. Like, the “snowflakes” comment you made is your legal disclaimer.
I just wanted to let you know that I attended a sexual harassment seminar last week so with work, and some discipline, I ought to be getting pretty good at. LOL
Keep up the good work you do for us, and say hello to Trash, or Clash, or Kermit, or what ever your doglette’s name is. Ha, ha (feeble attempt to be as funny as you)
Get it right! Flash! lol.
OH, I was so close!!
“On” or “off” you are AWESOME!!!
No you are awesome! Thank you for taking the time to type this up! You made my day!