I lie awake in my bed feeling rigid and frozen. I glance at the clock… 2:30 am. How am I not able to sleep? I took my night-time meds. There’s no reason I should feel this bad. I start to go down my list…
Did I have protein?
Well, seeing as I didn’t partake in the Brazilian BBQ for my friend’s birthday earlier that evening… no. I don’t know about you, but there’s something about a Brazilian man shaving endless amounts of meat at your table that gets me feeling anxious. I’m getting the meat sweats just thinking about it.
Have I exercised?
Now that is a yes because my dog Crash wouldn’t allow me just to miss his 2 miles walk every day. He is relentless.
Have I had a bowel movement?
I know, sounds gross, but the only way to absorb my medications properly is that everything goes in and comes out… like Shrek says, “Better out than in!”
I just can’t figure it out. I micro-dosed some of my Sinemet, trying not to take too much triggering my medications to spike, leading to dyskinesia. That still didn’t work. I was baffled. My last attempt on my list was…
Is my Deep Brain Stimulator (DBS) working properly?
Finally, about 3:30 am, I check my DBS and of course it’s working perfectly. Now, I was stumped. I guess I was just going to chalk it up to a bad night. No rhyme or reason. I spent the rest of the night an uncomfortable and shaky mess.
The following morning my alarm goes off at 7:15 am. Don’t ask me about the extra 15 minutes, for some reason I just think that the extra minutes of sleep will miraculously help me wake up easier. I scoot into the kitchen and start making a bowl of frosted mini-wheats for breakfast to take with my morning pills. This is when it all hit me. I usually take a half of a Sinemet pill right before I go to bed. But I noticed that one of my other pills, which is also a yellow pill was broken in half.
I had taken my folic acid and broke it in half and thought it was my nighty dose of Sinemet. Which meant that I went a whole night without any levodopa. Mind blown… I won’t do that again. Have you had any medication mishaps? Has there ever been a time when you took a wrong dose or missed one completely? How do you prevent it from happening again?
I have a reminder set in my phone but sometimes I forget to take my phone with me or have turned off the reminder and still forgotten to take my pill because I am busy with something. I have the weekly box that has been mentioned but in the morning I put all my pills for the day into a single container that can fir in my pocket. In addition to not eating any protein within an hour of my sinemet I also will not take any other meds within at least a half an hour.
I have missed two sinemets in a row and boy does that mess me up!
Hello Tim,
That is a great idea of putting your daily pills in a single container. Then they’re always with you. Thanks for sharing!
Super stressed with changes in my personal life lately has caused me to miss doses. I’m starting an agonist too which is suuuuch a stress reducer. 😉 Be well, Smitty.
Hi Allison. My wife bought these 7-day rotating containers. Since I take meds 8 timed per day she loaded my 6:00 meds in a separate bag. My dosage for each time of day Is pre-loaded,, and my phone alarm goes off for the dose that is due. You just press the spin button to move to the next dose. I can email you a picture of the container. She loads me up once per week
Hi Chris,
That sounds awesome! And your wife sounds like a lovely lady. Thanks for sharing!
Hi Chris, that was what I was going to recommend. During the past year I often focused on other things, so I remembered that my aunt gave my dad such a rotating container.
The thing is that I have to remember each night not to misplace it because then I won’t remember to take the first pill half asleep when getting up.
What’s the folic acid connection? I was DX almost two years ago and on no meds. Starting to be more symptomatic with tremors I m thinking of getting a second opinion with a movement disorder specialist. Is it normal to only be seen once a year?
Hi Susie, if you are having more bothersome symptoms, I wouldn’t be afraid to get a second opinion. More information is never a bad thing. I. Take folic acid for my health. It has nothing to do with PD.
been there – done that. frequently I miss a dose when I’m not paying attention/ Mostly the ebbs and swells of my brain’s dopamjne is really a mystery. But that’s PD.
Hi Roger,
It’s so true about our brain’s dopamine levels… sometimes you never know!
What is the connection to protein?
Hello Susie,
Large amounts of protein can cause your Sinemet to be less effective. It is also known as dose failure. Not all people are sensitive to protein, but for me, I can’t eat protein with my medication. Here’s a link to a post I’ve written about my experience with protein… https://www.perkyparkie.com/2020/09/how-i-use-protein-to-control-my-parkinsons/
I remember a time when I went to my rock steady boxing class and felt “off.” I had no energy and knew that something was different. I had taken my medication so that wasn’t the problem. I then realized that maybe I had accidentally turned off my deep brain stimulator. As it turned out, I had accidentally turned it off while checking my settings that morning. This experience made me aware of how much of a difference DBS has made for me!
Hello John,
WOW! What an eye-opener, eh? I turn myself off for surgeries and I can barely move… it’s disturbing!
Anymore, I rely on my smartphone to be smart for me and my medication timing. I keep track of what I’m taking, any changes I make during the day, and any side effects I want to tell my doctor of. I would be lost without my phone, that’s for sure!! As far as pills looking similar, I wonder if you could let your pharmacist know. Different suppliers have different looks to their pills. Perhaps they would change their supplier, or you can change where you get your folic acid.
Hi Rebecca,
What a great idea! I also live off my phone, technology can be so helpful! Thanks for sharing!
Yow! Get out the purple marker for the folic acid?
Dad,
Great idea! Or I could have crash point at the folic acid. But then maybe he will start pointing at treats instead!
I have a pill box that I got from Amazon. There are 7 individual boxes that stack into a clear one week container. I pull out the marked container that holds the day’s pills. The daily box has four sections for morning, noon, evening and night. I can easily see if my yellow pills are in each section. The only problem I have is it’s hard to put all my supplements in the same daily container. But glancing at the daily pill box and being able to see my pills, and putting the day’s pill box in my purse is an easy way to take them with me.
Hello Ginger,
That is a great idea. You can see them all a week at a time! Thanks for sharing!
I have also fairly recently gone to “blister packs” as I was finding it difficult to prepare my meds at night for the next day. I’ve only run into one glitch. One drowsy morning I started at the wrong side of the daily strip, then wondered why I was pretty stiff and just SO sleepy? When I went to take my second dose, I realized what I’d done. Since then I pop the morning meds out and set them by my bed, so I can take them before I even get up in the morning.
Hello Therese,
Luckily you were able to catch on by your second dose. It does make you say… huh, why I’d do that?
Oh my goodness, I was just having an issue today. I have a bad habit of not reordering my meds in time and i ran out of my amantadine. Luckily it arrived today so i only missed a day and a half. Sure makes a person realize what the meds do when they are not taken properly .
Hi Lori,
Yes, you sure do realize pretty quick what life would be like without the meds we have access to now.
I have more than once laid down to read or watch tv and fell asleep. Sometime between 2+4am I’m awake and can’t figure out why. then I get restless, uncomfortable and the tremors start. It then dawns me to check if I took my meds. Whether or not I fall back asleep it messes with the being of my day
Hello Beth,
It always takes a while to get your body back on schedule when you realized that missed a dose. Watch out for that couch! Gets me every time.
Yes! There was the time that my husband and I went out to do some errands together, and we ended up in the mall to do some shopping. Suddenly, I couldn’t move. There was no seating in the store , so I had to sit down on the edge of a Manikin platform. My husband paid the bill, and we started out to the parking lot. I could not move. JIM had to drag me out to the car and lift me onto the seat. This was my first experience with freezing because of PD. I was out shopping too long and did not have my Sinemet with me when I should have taken it. After that incident, I went online and purchased a necklace with a little canister hanging from it where I could store my Sinemet. Since then, I always wear my Sinemet around my neck when I go out because the freezing happened to me many times again., and now I know what I have to do.
Hello Ga,
What an unforgettable experience. But kudos to you for finding such a clever solution with that necklace. Now your husband won’t confuse you for a mannequin! Thanks for sharing!
I will never know. I take 22 pills a day. At times when in reach for my evening dose I see that o forgot my morning round. I turn my 8 morning round rightside up so it tells me I’ve taken them. So when I open my pill drawer and they’re all upside down I know I forgot. Then, of course, I sounder if I really need them? I’m still alive!
Hello Bob,
22 pills a day! Umph! Sounds like your system needs a fail-safe plan! But I am happy to hear that you are still alive!
That was one of my biggest fears. Sharon took so many meds and I prepared them for her every day. Getting them pre-packaged from MedBox was a big help but sometimes a doubt crept in about a med. Very often I had to go to the WebMD Pill Identification page to help out. I have no doubt we made a mistake or two along the way but fortunately, never with any ill effects.
Hello Jer-bear,
It’s so true with all the different medications and random times daily, it can be very confusing. Having the medications pre-packaged from MedBox sounds like a great help for Parkies and their caring partner. Thanks for sharing!