A friend was having her Bachelorette party this weekend and while I was excited about going, making plans in the evening can be dicey for me. I try to lower the amount of Parkinson’s medications at night to prevent any sneaky Dyskinesia from keeping me up. This means I have to take more pills in order to make it through the party. But for me, I was up for the challenge because it was important to be there for a friend… plus I wanted to wear my LBD… AKA my “little black dress.” Maybe that should be added to my Urban Dictionary.
I made sure that I time to get ready without being rushed, because every Parkie knows that someone tapping their toes and pointed at their watch can literally induce a panic attack. I carefully prepped my lady-bug-out-bag for the night, which included my photo ID, cash, credit card, lip liner, phone, gum, keys and 2 lip-glosses… just in case my mood changed, I would be prepared with a variety of shades.
With my hair styled with beachy curls, dressed in my LBD and my make-up flawless, there was one more final touch I needed before this Cinderella went to the ball… the perfect shoes. I was feeling lucky with my lady-bug-out clutch and my meds were on, so I thought, “hey, I got this” then opted for black stiletto heels, which is almost a requirement to wear on a girls night out.
The girls had rented a party bus for the night, so everyone could be safe while getting a little crazy. But knowing that my body could go wonky and my evening might be cut short, I opted out of the bus and carpooled with a friend… which I would find out later that this decision would alter my destiny. We arrived at a trendy restaurant where the evening began. I strutted in a little unsteady because it has been awhile since my high-heeled days, but it didn’t take me long before my feet found a rhythm. I guess wearing heels is kind of like riding a bike, you never forget how to do it.
The evening was off and running with Margarita’s, chips, salsa, the best guacamole I’ve had in my life and girl talk. I was having a great time until I felt my Parkinson’s symptoms beginning to creep up, but I wasn’t afraid. With my lady-bug-out-bag, I was ready for the zombie apocalypse if it were to come my way. I reach my hand into my bag and didn’t feel the familiar shape of my pillbox. Oh crap! I had forgotten to pack my Parkinson’s medications. Parkie Panic Attack for one please.
Now, let me remind you that I am the girl who has prepared to great lengths to avoid this very circumstance. I have pills in my car, my wallet, my keychain and my gym bag… all of which I didn’t have with me. So the fact that I had foolishly packed 2 lip-glosses, but forgot the most important thing to assure I had a solid night was a bit of a shock.
I can feel the anxiety starting to rise. Our food hadn’t even arrived and there was no plan to leave in the near future, nor did I want to! I was out and about with the girls. I felt almost normal. I started the night not even giving my PD a second thought, it was furthest from my mind… but now I couldn’t get my Parkinson’s out of my head. I thought, “I’m good. People have survived decades without medication and I even have DBS (Deep Brain Stimulation). I can handle one night. I will just sit here in my chair and I’m safe. No worries. I got this.”
Our food arrives and I was enjoying my goat cheese tamale, when I feel my body starting to stiffen… like someone is pouring cement over my body and while it’s slowly drying, I begin to suffocate. I can’t help but think, “Well this sucks!” As the dinner went on, my words got softer and more mumbled, but I was still determined to have a great night out. In a last-ditch attempt to alleviate my symptoms, I start digging through my purse, just hoping that the Sinemet fairy had left me a little yellow pill. Hey, I would have even been fine licking the inside of my clutch if there were a small chance of residual dust coating the lining.
I feel my posture declining, my facial expressions diminishing, and my anxiety intensifying. I’m watching people talk, but their words seem to just float by me. By this time, the ladies have all learned that I have forgotten my medication and it’s all just a matter of time before I would need to excuse myself. Maybe I could make an announcement to the restaurant. Ummmm, yes, could you stop the live music, pause the delivery of chips and salsa, oh, and yeah, can you guys stop talking so I can see if there is anyone with Parkinson’s disease in this wonderful eatery?
I knew that I still had to get home, take my medication and then wait for it to kick in. So the longer I waited, the worse it would be. I needed to tap out. I gesture to my friend that it was time for this Cinderella to leave the ball. I strutted like a Queen out of the restaurant… ok, well that’s a lie. I was gawky and awkward like a baby deer taking its first steps in life, but I made it out to the car without falling. Bonus!
I entered my apartment and went straight to the medicine cabinet. Sweet, Sweet Sinemet… I took my pills and waited for relief, but unfortunately, that wouldn’t come until the end of the following day. I guess it’s like pain. You have to stay ahead of it and not let it get out of control. With my delayed dose, I didn’t feel well for sometime after my girl’s night gone bad. Although my night was cut short, I was able to wear my LBD, eat the most delicious Guacamole and enjoyed the company of good friends. Now if I can just find a way to hide Sinemet in my stilettos.
Ohhhhh, been-there-done-that! Hmmm-build a secret pocket into our bras?
Now that’s an idea!!!
This happened to me yesterday! I forgot my levodopa/carbidopa for the first time. I was at work and wanted to stay to go to an exercise class. What a terrible feeling it was. It is comforting to know we share this. I now have a little pill box in my wallet (Oh, if I were courageous enough to carry a purse!) and one in my work office. Your post normalizes my experience. Thanks.
i knew when I was reading the part where you listed all items that went into the bag, that “we” were in trouble. You spelled out the gruelling point at which there was no magic pill, and you realized it. My heart sank for you, for that brief moment. You showed the strength it takes to get on with life, and I applaud you. PS I keep a “stash” everywhere, and it has saved me plenty of times
Allision are you able to eat with your PD meds? If I had eaten anything even a few chips with guacamole it would be hours before my PD meds would kick in. Even on an empty stomach it takes 45 minutes or more to work. Makes it very hard to eat out ever even at home very limited window of opportunity to eat without interfering w my PD meds. Should eat as soon as they work so it will be 2 hours since I ate and even that is dicey and sometimes wear off after 3 hours.
Marianne,
I am very sensitve to protein, so I have to be careful when I eat and when I take my medications. Good point to keep in mind! Thank you for your comment!
I have been there and done that! I constantly pat my purse to assure myself that my meds are always close by. I wish the rest of the world would understand this awful feeling and that once it starts, there is no way to stop it. Even a trip to the grocery store is well planned with pills near by. And if i don’t have water, i will put a sinemet in my mouth with a piece of gum to chew to help the pill work!
I have a lbd, but usually stick with flip flops!
Ha! I’ve done the gum trick too! What ever helps.
You described this so perfectly. I’ve been diagnosed just a little over a gyear at age 58. What a change in my life. Thank you for sharing.
Happy to hear you enjoyed my post!
I’m glad you survived your night out with the girls! I’ve had nightmares where I went on a vacation without my sinemet. Thankfully, this hasn’t happened outside of my dreams and hopefully it never will. I like the idea of uber meds 🙂
Alison, you crack me up! I’m certain you were rocking that LBD & those heels! I love how you found the humor in the situation. Sounds like the evening wasn’t completely lost 🙂
My beautiful friend this mama bear will now be carrying an emergency stash of meds for you in her bag of tricks! You were amazing Friday evening and rocked your LBD and your black heels were on Point…literally! Loved seeing you smile and laugh and enjoy yourself…I will always have your back 😘❤️
What a great idea! You always are prepared for anything life throws your way!
So you have had dbs?
Yep! 7 years now. Just type DBS in the search box on my blog and you can see all my posts.
Love it! You remind me that we can get through this easier with some humor! You are awesome!
Thank you for your kind words.
Hi Allison. I met a woman in the grocery store last year who noticed that I was having some major freeze ups. She asked if I had Parkinson’s because her sister was diagnosed with early onset Parkinson’s around the same time as I was diagnosed. Anyway we got onto the topic of making sure that we always kept extra doses of carbo/levo medication on -hand, and she told me that her sister wore this locket on her necklace all of the time (except for the shower). She used to hide two of the yellow 25-100 carbidopa/levodopa tablets in the locket because she always had it with her in case she lost or forgot a dose of medication or got delayed.
Just a recommendation to share to make sure you have an emergency dose (just in case you forgot your normal backups).
What a great idea! I should look into this!
Great story & nice to hear others share the same “addiction” to PD meds. I’ve got a party coming up shortly & will keep your experience in mind – but I won’t bother with the lbd.
Don’t underestimate the power of the LBD…. maybe for you it could be “little black denim…ummm, that sounded better in my head!
The video clip didn”t show up in my email, so I just had to click on the link to Perky Parkie to see what it was. No need to reread the blog, I scroll directly to the clip and about die laughing. Now I know what “on” really means. It means laughing out loud without a care in the world. Thank you, Allison!
Thank you Dale! Happy to hear that my post gave you a giggle!
Wow, Parkies need a drone delivery service for backup med delivery! We could call It “NO shake rattle & roll?” Glad you got home safely. Whew.
Now that’s an idea….Uber Meds!