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. Also, I want to remind you that my blog is strictly for entertainment purposes. I’m not a doctor so, you should probably follow-up with someone a little more serious than myself…
I am shall we say, sensitive to protein. Yes, I have trouble eating things that look like they could still be alive… like the rotisserie chickens in the grocery stores. There they are, headless, featherless, rolling over a flame. It’s like I can almost hear their tiny chicken voices singing, “Hello darkness, my old friend.” Now, how can you take that home and eat it? But that is neither here nor there… moving on. What I mean by saying I’m sensitive to protein, means that it impacts the effectiveness of my Parkinson’s medications.
Absorption of Levodopa
Parkies can feel like they’re on a roller coaster with the ups/downs (i.e. on/off) their dopamine levels are constantly changing in the body. This can be due to many factors such as exercise, stress levels, metabolism, the timing of medication, constipation, and protein. Remembering that we all have our own unique version of Parkinson’s, there are many variations that we can mix it up with lifestyle and diet to be our most fabulous.
Protein Interference
The performance of Levodopa can be diminished when taken with protein. This is due to the fact that protein is an amino acid, as is Levodopa. Which leaves the steak that you just annihilated competing with your Sinemet for absorption. To avoid dose failure, use the “1-2-hour rule.” Don’t eat high protein meals within one hour of dosing or wait until 2 hours after your intake of protein.
But what if you could take that knowledge and flip it. What I’ve found is a small amount of control over my Parkinson’s, when my body is just not behaving. For example, let’s say I’m super dyskinetic, and I can’t find stillness. During the day, it might be tolerable, but at night when I’m trying to sleep, I keep myself awake with my involuntary movements… not to mention, my dog Crash gets frustrated when I’m flopping around like a fish. He will excuse himself and lie under the bed until the coast is clear.
When I go to bed and I experience Dyskinesia, I can eat a high protein snack such as Greek Yogurt, and within 15-20 minutes, my body will be still. I have found a way to control my symptoms with diet and microdosing my Sinemet. I will get into self-medicating on my next blog, so make sure you subscribe to my blog to keep up with my latest posts.
Remember when I referred to us as snowflakes? The same concept goes with a person’s sensitivity to protein. Not every Parkie will experience problems when taking protein with their Parkinson’s medications. A way can figure out if you are sensitive, is keeping a journal of a 7-day experiment and look for patterns. Try varying days that you eat high amounts of protein and how your Parkinson’s reacts to days where you eat protein in moderation. Maybe try to eat the larger amount of your daily protein at dinner when you might be less active. This might help with dose failure due to protein when you’re out living life to its fullest!
Do you have any dietary variations that you’ve found to be helpful or hurtful with your Parkinson’s?
Thanks Allison great useful blog.
Roger
Allison, some good insights here. I try to embrace your one / two methodology you shared some time ago, i.e. takings meds one hour before chow or meds two hours after chow. Sugar before rack time seems to negatively impact falling asleep quickly for me. One thing I have drifted into is ingesting a can of wild caught Moroccan Sardines (the ones with scales and entrails in tact) in extra virgin olive oil right before rack time. I really got into this bizarre practice while working in Tunisia and now deal with an intense craving each night for these little delicacies. I almost freed myself of this near- addiction when I found hair in a can of the Moroccan Sardines while in Tunisia (truthfully) but found myself gingerly picking out the hair and eating the sardines. Only downer is after falling asleep I begin to drool fish oil and my cat always wakes me up licking my chops. I buy the sardines by the case at my Wholesale Club. So this is my dietary variation story and I’m sticking to it. Always appreciate you Allison. I always look forward to your wonderful writing style as well as helpful life experiences.
Wayne,
I don’t think I’ve ever heard of a craving for sardines, but hey… whatever floats your fishy boat! Thanks for sharing!
Perkie,
I was going to chow down on some chicken tonight, but don’t know if I will after you post 🙂
I try to load up on protein late in the day and that works ok for me. Prior to DBS, I was taking a lot more Sinemet and it was a challenge to time my meals and restrict my intake of protein.
John, sorry to ruin your dinner tonight! Ha!
I thought Crash was in charge of your Beagle Department. Interesting observations on protein!
Hi Allison. I hope you have a great holiday season 🎄 we are fortunate to have you as a writer and your wisdom and all this information with the condition we’re in .. parkinsins has changed my life I miss companionship. I guess it scares everybody away I wasn’t used to that! God gets me through each day.
I thank you for the information on the Protein , it does mess me up! I I have to think about it all the time before eight or after so it doesn’t mess my pills intake up. I am at a process right now deciding to do the DBS or not it’s kind of scary 😦 but I am trusting in our Lord and Savior 🙏
Hello Eric,
Yes, DBS can be very scary… I mean, it is brain surgery after all. It was a decision I didn’t take lightly. But the fact that you can have that as a treatment option is amazing! Hope the new year brings you some clarity. Happy Holidays!
My neurologist has me taking regular carbadopa/levadopa 1 hour before each meal, (Can be a pain in the a.m if I have to be out early.) She has also added 2 carb/leva extended release at bedtime, more to try to keep my dopamine levels up so I sleep more deeply and don’t have as much sleep disruption. That’s working much better — I have restless legs and take mirapex for that as well, but so far no dyskenesia other than my toes are always moving, even if I’ve just taken my carb/leva. I’ve gotten so used to it that it doesn’t keep me awake. Last night, Last night, with a Half hour break to use the restroom, I was able to get 7 hours sleep – only the 3rd time since I started my sleep journal in mid January that I have managed to get that much. Until I started the new medication regime at night I was averaging 3 and a 1/2 to 4 hours a night. Now it’s averaging about 5 and a 1/2 or 6!
If I ever run out of my extended release, I know now to try some protein at bed time! Thanks for sharing in such an entertaining blog! PS
A nutritionist from I think Seattle who had a webinar on a couple of months ago and has studied the diet of Parcae’s for 15 years said that 1 of the things we should avoid in order to not exacerbate the symptoms is dairy products. Have you ever seen a correlation between your symptoms – off and on times – with your intake of dairy? I have been doing my best to eliminate it, but have only cut it in half or so. I have also begun more regular exercise. Somewhere between the to my neurologist said just last week at my 6 month check up that she thought I was doing a little better. Again, as you have disclaimed, I’m no doctor, but it might be something to consider trying a different form of protein at night.
Norma,
I have had noticed dairy impacts my meds, but I believed that was due to the protein in the dairy. But something interesting… I can’t eat oatmeal. That’s just as strong as protein for me. Thanks for sharing!
Has anyone noticed a different effect from plant protein vs. animal protein?
Natalie,
What a great question! I’m going to look into that!
Hi:
Learned some time ago about protein and Parkinsons’s symptoms. Problem currently is that I need to take my Levo/Carbo every 1 1/2 hours so it’s difficult to space out my protein intake.
Question: Does anyone out there know of a dependable wrist watch that can be set for multiple ( every 1 1/2 hours ) alarms to remind me to take my meds ? Currently using my cell phone but sometimes I am not near it when alarm goes off.
Occasionally, get night time Dyskinesia so will try the Greek Yogurt !
Keep on, keeping on !!
Geraldine,
I have an apple watch that allows you to set an alarm on your iPhone and it will go off on your watch. Also, you can snooze an alarm, and it will keep reminding you that you need to take your medicaitons.
I have to take my med every 2.5 hrs six time a day. I downloaded an app medisafe works pretty good (still free so far)
Roger
Roger,
Thanks for sharing what has been working for you!
OMG! Well you made me choke on my coffee this morning
I will never be able to look at one of those chickens again without hearing that song “hello darkness, my old friend”….lol.. it’s just like the scene from Reservoir Dogs and the song Stuck In The Middle..
Gary,
Ha! Happy to see that you caught my song reference. It’s true… just look at them the next time you’re in the store.
Allison, that’s really interesting. So do you sleep better all night or does it just help you fall asleep easier? Thanks for sharing.
Kai,
Great question! I do fall asleep easier but mornings tend to feel groggier and slower to start.
i try to wait for an hour before eating lunch, which usually includes some kind of meat. But I no longer can tolerate red meat or cheese even if I wait. Turkey meatloaf seems to be OK and grilled chicken, but I try to keep the amount fairly small. In the evening I only eat a small snack, such as turkey jerky or a low sugar protein bar. I sleep better that way.
Sugar is my nemesis. When I can cut it out of my diet, everything works better. Chocolate is especially bad. If I eat a brownie in the morning, my feet start cramping up by early afternoon.
Judith,
NO!!!! That sucks! I love my sweets! I can’t believe how much chocolate impacts you… what a drag!
I noticed the one protein that causes my medication to not be absorbed is fish. It doesn’t matter what type of fish the medication will not control my PD if we are having fish for the meat. I always need to take my stalevo at least an hour ahead of when I plan to eat. For other meats I only noticed a slight interference.
Chris,
Fish, that makes sense! I love fish too… such a bummer!