Hello, I'm new to this site and hoping to find new coping strategies and ideas from people who are also dealing with this disease. I was diagnosed with PD in 2023, with tremors on my dominant side (left), and perscribed (2)100/25mg levadopa/carbidopa , 3 to 4 times/day.
My PD has progressed rapidly since then, which is only 1.5 years. I'm now taking about 20 LD/day, a rotigotine patch 4mg/24hrs and .5 mg of rasagaline/day. I'm wishing apon my lucky star, that I will be put on a waiting list soon for DBS or a subcutaneous injectiion pump, but I'm not holding my breath. Our medical system here in Canada is in poor shape, with several years long waiting lists for DBS.
My main concern right now is how to keep up my protein intake, because my LD dosage is about 2hrs and 15mins apart. I am focusing on eating nutrient rich foods like liver sausage but I keep getting my LD blocked by the protein and then have to suffer for a couple hrs until the protien clears my small intestine. I am also drinking a lot of milk which doesn't seem to block as much as other proteins, especially plant based proteins.
I have an appointment with my neurologist in a couple of months, but until then any advice on diet would be greatly appriciated. I am also vert interested in hearing from anyone else how is experiencing a rapidly progressing PD like myself. This certainly isn't anything like the typical, slow progressing PD I was expecting. Thanks very much.
Written by
esorhanna
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Esorhanna, I was extremely sensitive to the animal protein and to some kind of fats. I found that if I use coconut oil or quality olive oil I could avoid the off periods after dinner. I also avoid diary products for the same reason. I improved my tolerance for the various foods by getting rid of the constipation. My gastroenterologyst prescribed me motegrity 2mg and mirolax³. If you search my earlier posts you can find the link to the original article that was published by the LA Parkinson support group. I would recommend that you do a genetic test to see if you have some known defects of DNA that could explain rapid progression of your Pd
Protein and Levodopa don’t mix very well. My solution is to avoid taking too much protein in the day, and load up in the evening. This works for me because I don’t take any meds after my evening meal. Otherwise, this reference to how long different foods take to digest might be interesting.
Thanks for the link on how long it takes for various foods to digest. The information is helpful for choosing which foods to eat and when. All protein is not created equal!
Try and get your protein from eggs, vegetable sources, if needing dairy use strained yogurt, before.Mushrooms, etc are good too.With animal protein eat a few chunks of fresh pineapple/ papaw, kiwifruit before you have meat. The papain will help to digest protein and improve gut .motility.
Make some of the protein liquid form as in broth etc. That can make some absorption lower down the intestines easier.
Exercises like walking improves gut motility. Don't think about it too much.Just
Yes it’s happening to me. I call it turbo pd! Rapidly advancing PD is being mentioned more and more in these PD groups. I’m hoping that DBS will help. Surgery in February. CL has almost completely stopped working -15 minutes “ON” time per dose. Ps: I only eat meat eggs or dairy once or twice a week. But I also get protein from beans, nuts, nutritional yeast, seeds, veggies, grains etc. Higher protein is not necessary.
Only 15 minutes of "ON" time - yikes, at the rate I'm going though that could be me soon. I'm also taking rasagiline and rotigotine which so far have not extended my ON time yet. The only thing I've noticed with the agonist is I'm more animated, and talking all the time. I have also bought an entire new wardrobe since starting the agonist.🙂
A PD nutritionist told me if you cook potatoes, then refrigerate them over night, the starch becomes resistant which wont spike your glucose and will make it to your large intestine to feed the goid bugs!
Even if you don't have bkood sudmgar issues, its better for your brain to keep carb spikes to a minimum. The potatoes can be reheated after refrigeration.
I have had good experience keeping protein levels up with whey protein isolate, which is one of the fastest absorbing proteins there is. That allows for a minimum period during which the protein is competing for uptake with the levodopa. I use the Now brand.
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