I was diagnosed in 1992 and have had DBS surgery. At 73, I am actually quite healthy. My question deals with protein intake due to Sinemet being blocked by animal and even quite a few plant proteins, namely amino acid foods. Are the other Parkinson drugs also sensitive to proteins? Has anyone else experienced this sensitivity and how do you overcome it? I am quite active but without the amino acid foods - lentils, nuts, soybeans, seeds - my energy suffers. Thanks for your help!
Annie
You need to time your sinemet intake to one hour before you eat a meal/snack with protein or two hours after. I kept my husband on a fairly good schedule so he got the most benefit from his meds. We kept his first dose at his bedside so he took them before he got up. By the time he was able to move around well, he was able to eat breakfast and them plan the rest of the day.
Thanks, but I have to eat small meals with short time between, so that doesn't work.
try eating your bulk of protein after your last dose so your body gets what it needs but you get the best bang from your dose. Also there are newer delivery systems for c/l that might work for you. Speak with your MDS about the possibilities
Thank you for your suggestions!
I am very susceptible to protein as well however, I take first dose at 0730 after 16 hour intermittent fast. 1.5 c/l with Entacapone. I eat 830-0900 sometimes heavy protein. I’m good for morning regardless. Next dose at 1130. Even if I don’t eat protein tremors return. If I eat protein tremors are exasperated for afternoon. On time = 3-3.5 hours.
Yes, I experience this. I deal with it by eating most of my daily protein intake after the last dose of the day plus 1 hour.
Thank you - I wondered if this might work.
@levod, same here. Rytary appears to be super sensitive to any kind of food, period. Doesn't matter if it's protein or fat or carbohydrates. The only "food" that it appears to tolerate is apples and apple sauce.
In fact, I see that the trials were conducted using applesauce! Figures 😂
RKM
Too expensive also!
@annmariebaird, it is covered by most insurance in the USA, especially, Medicare.
I doubt if NHS or the Ireland equivalent covers it.
RKM
That is good_tho know .Thanks
@annmariebaird, you are too kind 😏. I later read your profile and realized that you are a "Rytary Veteran". My apologies for being so presumptuous about your experience with this particular medicine. Obviously you have a negative experience with this medicine in your past. I read your first post on Rytary and you appear to have been quite pleased with the same.
However, I am also curious to understand why you seem to have given up on Rytary.
RKM
I gave up Rytary when I had my DBS surgery. Also, capsules are difficult for me to swallow.
I'm on Medicare with a drug supplement and I have a huge copay with Rytary. I'm taking it because I have more energy in the afternoons and less brain fog than I had with generic Sinemet.
I always find it interesting how different everyone's reaction is.
@dachshundfan, would you mind saying how much you pay for Rytary every month?
RKM
Just over $300, with Medicare & AARP Medicare RxPreferred.
Amazon's new pharmacy was two dollars higher than my current supplier.
Wow. Ouch. Do you think that Amazon pharmacy is better than your prevent suppliers?
I am on a high dosage.
I like the current mail-order pharmacy because they ship from a warehouse that is almost walking distance from my home! Amazon already gets plenty of business from me.
LoL, thanks 😂. I am about to try the pharmacy myself.
I know the "Amazon Addict" feeling. Guilty as charged! BTW. just tried going to the detailed historical order summary section of Amazon's account page and "shocked", (not really) with the thousands of dollars I have spent over the years making Jeff Bezos rich.
Thanks again for sharing.
RKM
A doctor told me the meds are absorbed but not right away. Sinemet or Rytary are proteins that compete with amino acids for absorption. But eventually everything is absorbed, just not right away. It may depend on how you feel without meds. I take Rytary three times daily one hour before each meal. The first two doses seem to prevent gastroparesis. The third capsule doesn't seem to. Or perhaps it has worn off before I'm ready for bed. I have dominant hand tremor and nothing stops that.
Hello. Have you been happy with dbs and did you have one or both sides done? thanks.
Very happy! Changed me from a sedentary lifestyle to an active lifestyle. Both sides.
Wow you have had Parkinsons since 1992? you look great wht is your secret? 
Exercise of all kinds and especially boxing. I eat vegan organic very little sugar. And i never give up. Hi Ho SilverThank you!
That is awesome!! i know i really need to change my diet because i am a sugar aholic! and i struggle to stay on with my meds. I also eat to much meat so my goal is to change things now before i get to much worse.TY for the inspiration!
You are welcome! You can't change your lifestyle tomorrow.. only today !
Your experience, especially the exercise, looks very useful to know...perhaps moving doses from an hour pre-meal to 90 minutes?
Also, I wonder what is the state of actual nutrition science on how much protein a person needs, vs. how much various regions or societies typically eat, and what the connection to "amino proteins" is supposed to be?
Yes, sugar is typically bad news. Getting a taste for sugar substitutes has pretty much been the only way of help for me. Also if I put just a bit into a starchy snack, say toast or a microwaved potato, sugar craving is reduced.
Was going to say exactly the same! Wish my HWP could look, and be, as good as annemariebairdHe was diagnosed 2005 (67 now). Decided not to have DBS 4 years ago even though he was accepted as a suitable candidate. He has arthritis and a lot of pain so his mobility is very poor, as is his diet. I've managed to get him off meat but he still eats too much sugar unfortunately.
For some reason i crave sugar more now that i have Parkinson's! It temporarily makes me feel better does that happen to anyone else?
Sure - it's easier to fall into the sugar habit - a bit like smoking... but deadly results.
I crave sugar more and more. I try to limit to 1 sugary treat per day, but often fail. Chocolate is my downfall.🙁
I also crave chocolate. I make a chocolate smoothly that tastes like a milkshake. There is no sugar and it cures my craving. There are lots of no sugar chocolate snack bars out there.
@rs313, sugar should be regulated like a drug 😂. I am a sugar addict and a diabetic. Imagine my plight 😫. I did find that Parkinson's has aggravated my addition.
RKM
Diabetes certainly makes a difference.. so sorry. Your tenacity is to be admired for sure. You must be brave to face each day. You have my respect. Be strong!
Sugar is evil. I was addicted too. I had to completely cut out added sugar. It is terrible for our brains.
The choice to have DBS is not easy. Can't look back and wish. Only look forward and fight for each day!
I was diagnosed 10 years ago and had DBS 2 years ago. I cut meat out of my diet completely about a year ago and it made a massive difference and allowed me to cut my Sinemet by nearly 50%. I felt a huge difference after about a week. Have to be careful with plant based proteins too, I can eat as many lentils or nuts as I like but have to be careful with beans and chickpeas. As far as I know it’s levodopa that is sensitive to protein, not Sinemet specifically.
Interesting.
That’s impressive.How was the DBS?
Worth whatever it took. I felt that if i didn't give it a go i would be in a nursing home in 5 years. I made up my mind to have it done and never looked back.
Levodopa is being blocked by proteins but also constipation-related malabsorption. Once again, thiamine seems to help. 60 years back, Matsukawa and Sato in Japan found that eating garlic allows gut bacteria to produce thiamine on their own.
Hello Annmariebaird,Thank you for asking the question.
I am diagnosed with young onset Parkinson since 2015 and am having this problem for years.
It's been 2 years I am taking Sinemet plus 75 every 2h45 minutes and that leaves me little time to eat the proteins without paying a toll.
It is frustrating to see the ON time just going on with no threat as long as I don't eat. I have problems with meat, cheese and vegetal proteins and excess of fat.
I think I can have a better control eating fish, chicken breast or a steak before dinner, sort of on an empty stomach, prepared with as little fat as possible. I noticed I digest it in a more predictable time and with less interference.
I don't know what is your experience Annmariebaird, wifeofParky, ParleParl, PDpatient, Levod, KaypeeOh and others, but the truth is that 2 hours wait after the proteins' meal is not enough for me. Depending on the days, I tend to have a protein meal in the evening, around 1900-2000. I am off at least until midnight. I take my dose of levodopa at 2130 but it does happen like 2 days ago it didn't get absorbed, so much so that I got a dystonia episode around 2230. I must admit that day I have had a self-made pasta with bolognaise meat dish with 150gr beef and probably a significant amount of olive oil. Not a safe meal...
Although my neurologist wouldn't like it I end up some evenings taking Sinemet plus multiple times or at higher dose. I need it to fall asleep as well!
I have also tried and I tend to take digestive enzymes when I don't forget but I am not sure what's the effect.
I have searched in the UK a nutritionist with experience with this problem and had something to contribute but could found only one abroad. We spoke on WhatsApp. She told me that in spite of working in a big Parkinson centre, my struggle was "extreme" in her experience and the protein interference is generally very mild.
Nevertheless, she is the one who gave me the idea to increase the dose, and take Sinemet Plus 100 mg instead of 75. I feel that's probably right.
But it would be good to find a neurologist wherever he is that has a full understanding of the matter to answer my questions in particular to allow social activities like joining friends or dating without a unscheduled off-time. I do believe indeed that the schedule of the impact of protein varies in a complex way (per your gut health, your menu on that day) and it can occur even hours after the meal and professional help with that would be very significant for my quality of life.
Apologies for this lengthy answer.
Your experiences are very helpful. I am so sensitive to any kind of medication that I started experimenting with off/on times and came up with what works for me. If only we all were alike in our PD but that is not the case. Thank you.
I agree with wifeofparky - the schedule from neurologist is quite clear about not taking any protein with levodopa as it will interfere with the benefit of medication.
Anne Marie you look terrific! I hope I’m in as good shape as you at your age! As for your protein problem, I know nothing. How does one know that they have it ?
Thank you. You will know you have protein problems when you are having a good on day, have lunch, and then all of a sudden it is like you have never taken a med all day. Not fun.
Hi! You disappeared after you had the DBS and I was wondering about the results.
I'm happy you are okay.
Thanks! Doing pretty darn good for 73!
Some people had issues with the DBS but it seems you are a lucky one. Did it take long time to adjust the programming? How long lasts the battery? Is it wireless rechargeable?
Thank you.
It takes a while to get it dialed in. My dr set a basic program and then allowed me how to adjust it. I have a rechargeable battery. I sit down and watch a movie once a week and rexharge. Piece of cake!
So it is a wireless rechargeable battery. After how many years needs to be replaced? I remember last year you were in a bad shape and I'm amazed to find you in such a good shape now.
Last year was going to breast cancer.
Now I'm back. Never give up never never never
Supposed to be about 8 years 8 to 10. The other one lasted 3.
You are so inspiring Ann Marie! I’m 45. I think you were about my age when you got PD? I’m sorry to learn you have had breast cancer. I need to have a surgery soon. Your tenacity is such a great example for me. I am very appreciative!
Finding inspiration in those who have been on the path I’m now on is so comforting.
Your words are kind. Thank you. Stay on this site - it is so helpful!! Lots of good experiences with all kinds of issues!
Vegetarian is good for me - what works for you may be entirely different.
Just one overview point. In this complex administration of either medication, you need to consider another important variable in the effective absorption of the medications. This variable may or may not be germane to your present situation but a common complicating factor in Parkision’s medication diosing s CONSTIPATION. This is often accompanied by a SLOWING of the normal peristalsis of t he GI system and can lead to variable rates of absorption of Parkinson’s medications. Just another consideration in this 3-Dimensional chess game of Parekinson’s treatment.May you have much good luck on the Journey
Try collagen powder
I don't understand. Collagen for which issue please?
PROTEINS / KETONIC DIET
Robert Rogers Ph.D Parkinson's recovery site. Results of a small survey done by Rogers
Do animal proteins cause an increase in alpha synuclein? 
quercetin: Proteins Required for Brain and Heart Function Activated by Pickled Capers - gastrointestinal, thyroid, pancreas, muscle....
Amino Acid Therapy info
