July 5, 2017.
Parkinson’s and Protein.
This article might be a bit technical; the gist of it is “don’t eat much protein if you want your meds to work”.
Dopamine, o dopamine, you used to be my friend!
Dopamine makes it possible for all of us to walk. This brain chemical is mainly manufactured by brain cells in the part of the brain called substantia nigra. For us parkies, many of these cells have died but we don’t know how or why. Apparently, 70% or so of these production cells are gone by the time we notice the first symptoms of Parkinson’s disease. Most people with Parkinson’s take a medication based on levadopa or l-dopa which replaces the dopamine. It also sometimes causes very annoying dyskinesia but that’s another story.
Dopamine, I’m sure many of you know that dopamine is also part, and maybe the leading part, of how we experience pleasure and feeling good about what we do. Might this knowledge help us to understand why many people with Parkinson’s are depressed and many have problems with motivation and initiative. Wow. It’s like Parkinson’s Disease is an iceberg, most of it is not visible. Sorry for the tangent.
Levadopa in it’s various forms (sometimes called Sinemet or Sinemet CR (controlled release), also comes as Staleva and several other brand names. A powerful drug combination that provides increased mobility for many people with Parkinson’s disease. Often, carbidopa is also included to prevent stomach upsets. The combination is referred to as Levocarb. L-dopa is usually taken orally several times or even many times a day.
My Parkinson’s was diagnosed Christmas of 2006. I am not a doctor nor a brain scientist, so I wrote the following information strictly from my own perspective (66 year old male, about 180 pounds, 6’1”). I assume each person is different. Also, this is not about a low protein diet.
I used to take my Levadopa/Carbidopa (I believe this is called Levocarb in Canada and Sinimet in the U.S.A. And Europe.) orally; it is a yellow tablet with a 2 pointed shape that is scored so that you could take 1/2 tablet. Now I’m mostly on Stalevo with a couple of Sinimet CR for stability and 2 levodopa/carbidopa to fill obvious holes, especially at night. Our pharmacist has been very helpful to set up an effective sequence.
My experiences with L-Dopa
For me the l-dopa and Stalevo take about 50 minutes to an hour to take effect; the chemicals need time to travel to the brain, pass through the blood/brain barrier and change into dopamine once in the brain. The Sinimet CR is less predictable but is supposed to last longer. Once the dopamine (a neurotransmitter) arrives, it is then used by the brain to communicate with the rest of the body and improve mobility. It works pretty well for me; in fact it makes me sort of normal for about 8 hours a day. Sometimes the medication does not work for a while and then starts working again. I believe this is called the on/off effect.
How does protein fit in?
Here comes the purpose of this blog: Certain kinds of protein use the same brain infrastructure as L-dopa. Somehow they go into the blood stream first and my poor brain chemicals get lost in the shuffle and come to a watery end if you catch my drift. Down there they can do no good and might actually do harm out in the rivers or lakes if they do not get caught by the cleaners.
If there is too much protein in the stomach (or the digestive tract), the levodopa/carbidopa does not get to the brain and is eliminated from the body. I sometimes visualize this as a ferry boat crossing the water. The protein takes all the seats and the medication is thrown overboard. Apparently not all Of us receive that information, which to me seems so necessary for a decent quality of life.
The best advice
The best advice seems to be to eat less protein during the day and have more protein in the evening. This makes sense but the actual details do not seem available in the literature or on-line. It also is rather difficult to explain to others what this is all about. That’s why I’m writing this article, hoping that it might assist others. Again, this is my own experience and yours may be quite different. Avoiding too much protein during the day requires a shift in eating patterns and can be a nuisance to both patient and caregiver. We need protein to sustain our bodies and especially our muscles. So we can’t avoid it altogether. A complicating factor is that the “off” period does not occur immediately but later when any medication already on it’s way to the brain runs out. Try to explain that to your family and friends.
The medication needs a 15 minutes or so head start before eating the protein. After the protein, it takes 1-2 hours (depending on how much protein you ingest) before the Staleva or levadopa/carbidopa can be effective again but keep in mind it takes an hour or so to become effective.
My current prescription is for 1 Sinimet CR 7.00 a.m., then 1 Staleva every 2 hours (6 total), with the last one just before supper. Then one more Sinimet CR about half hour before bed.
I eat a lot of fruit, along with some cereal for breakfast. I try not to eat too much for lunch. Supper is a normal dinner, making sure it includes lots of protein. As you noticed, I don’t take any medication between supper and close to bedtime, although occasionally I take a Levocarb just to keep some symptoms down. Just for the record, this is all approved by the neurologist and worked through with the pharmacist.
What if I don’t want to have a low protein lunch. Of course I’m in control of the exact timing (actually my iPhone is but don’t tell anybody) and sometimes it’s worth it not to follow the regime but to enjoy something different. For example, last week we had a scrumptious lunch, I had smoked salmon and all kinds of other stuff. 2 hours later I paid for it in “ off time” I could barely walk but it was worth it. Don’t do this if you have to drive though. No use taking the Stalevo, it wouldn’t get on the ferry with all those protein guests. You’ll save your insurance company a few dollars. Perhaps in a future blog, I’ll talk some more about breakfast, working out details of protein’s effect on l-dopa absorption and also about the psychological implications of these daily decisions, which taken together can sometimes feel like a day job.
All the best, feel free to comment or scroll down to sign up for email notifications.
Casey