I supposed it has become somewhat like reciting DOGMA to most of us that have Parkinson’s Disease:
“DO NOT TAKE PROTEIN, PROTEIN IS BAD!”
Like all other myths, this one too is based on half truths….
Ever since I can remember from my training days…the war has been waging over how much protein intake is too much or even if protein should be consumed at all?
When is protein intake too much? How do you know? And is this the culprit of most Parkinson’s motor fluctuations?
These are some of the questions I will attempt to answer in this piece today……
First, we have to keep in mind that Parkinson’s disease is a very heterogeneous entity -everyone is as unique as a snowflake or as our own individual fingerprints!
Therefore, one answer DOES NOT & WILL NEVER FIT ALL!!!
Hence, the answer to this dilemma is as varied and unique to each individual as the disease itself.
So instead, I will attempt to provide some general guidelines.
Rule #1 : It is true that a heavy protein intake will decrease absorption of L-Dopa …
This, however, is of no real significance unless you are a patient in late stages of Parkinson’s disease and are already having severe motor fluctuations due to medication.
The protein intake along with medication can delay the absorption as well as the amount that goes to the brain.. thus delaying the onset of effect and potentially causing a decrease effect (less than optimal) …neither of these matters if not in late stage because symptoms can be modulated with smaller doses and typically a slight delay in onset of medicines do not make very much difference.
But, if you are absolutely dependent on every ounce of medication to have the maximum effect- like stop from shaking or becoming so rigid or to avoid freezing then you don’t want to have decrease absorption because the consequences can be detrimental like falling!
As a physician, caregiver, and patient I have found that the most common cause for commonly occurring fluctuations in patients suffering from chronic illnesses is without doubt the SWITCHING of medications from brand to generic by pharmacies! But, more commonly from one generic to another due to best price of manufacturer and insurance coverage.
In our efforts to save money we are paying the price in physical stability and perhaps causing of our own disability inadvertently!
Every generic medication can fluctuate by 45%, this is because according to the FDA, “a generics maximum concentration of active ingredient in the body must not fall below 20% below or 25% above that of the brand name.”
The guidelines are for a generic to contain same active ingredient as original but the extra ingredients are not under same scrutiny and thus tend to be of a lesser quality! The fact that the “extra ingredients” in generic drugs are not the same quality can have a great impact on bioavailability – amount of drug absorbed into blood stream.
Add to this that, an estimated 80% of active ingredients and 40% of finished products come from overseas in which a great deal of them the FDA have never even inspected…
So every time your pharmacist gives you a different generic or goes from brand to generic, an individual is susceptible to changes and fluctuations for this reason alone. Although, theoretically the “same” medicine of the ” same dose” is given, the result is likely to be more side effects or less efficacy!
Rule #2 : if you begin experiencing fluctuations in motor symptoms look first at your medications…..BEFORE altering PROTEIN in diet!
Make sure no recent changes from “brand” to generics has occurred.
If you have good insurance coverage and can afford to buy “brand”, I highly recommend
You continue purchasing BRAND name medicines …
but, if you are bound like the rest of us to finding the most economical means because let’s face it Parkinson medications ARE NOT CHEAP! ..only allow your pharmacist to stay with the same generic brand…they CAN do this…you just have to ASK …I DO ALL the TIME for CERTAIN DRUGS! In this fashion, they can record in their file what works for you……and ALWAYS look at your medications before you take home and again before you take for the FIRST time!
If medications are different in shape, size, or color but your doctor has NOT changed dosage or medication then you have been switched to a different generic…stay with one that you as individual can tolerate…
if is too much too remember…make a chart…with names, doses, color, shape…and write down if worked or not…then when you get refill you can ask specifically to make sure they stay with specific type like “blue” generic for instance ( because different companies make different colors etc. and pharmacies will use a particular company depending on which is the most profitable to them and/or some times a particular company maybe the only source available that has particular drug). Also if brand is only thing that works or you want to stay with this make sure your physician always writes “brand name only” on the prescription and pharmacy will NOT substitute!
Rule #3: if still having fluctuations but not end stage, nor had medication changes BEFORE CHANGING PROTEIN INTAKE consider the 2nd most common cause of fluctuations in Parkinson’s patients is malabsorption due to constipation and to presence H. Pylori. This infection was found to make PD drugs more difficult to work according to a recent abstract published at a conference. The H. pylori infection which requires a blood test to diagnose and is easily treated with antibiotics once treated significantly reduced L-dopa “onset” time according to this paper.
What occurs most frequently in Parkinson patients is fluctuations due to malabsorption from constipation rather than protein intake….because as you KNOW not only is GI motility DECREASED from the perspective of non-motor causes of the disease but also the medication take a toll on the gut making it more sluggish!
One way to combat constipation is to set up a bowel regimen …this requires a team approach (dietician , nutritionist, & GI doctor to work along side with your neurologist and/or MDS) to manage any and all of bowel symptoms..
Furthermore, following these guidelines will help improve motility and increase digestion
• Limit alcohol intake.
• Avoid alcohol which is high in indigestible carbohydrate, such as beer.
• Clear spirits such as Vodka & Gin with water/soda flavored with fresh suitable fruit in moderation is preferable.
• Drink plenty of water.
• exercise daily
Eat in moderation ( stick to a schedule and try to avoid eating past 6 pm)
• Chew your food slowly and well and take small bites
• Limit processed foods
• Limit or avoid processed meats
• Fresh fruit, vegetables, & whole meats/fish are best.
Rule #4: If still having fluctuations and have ruled out all above and/or your disease has truly advanced then is time to consider a diet that will not interfere with medication absorption …this is only true for L-dopa. Take medicine at least one hour prior to intake of food ( protein) or 2 hours after protein intake.
Make sure that your bowels are regular at all times because any constipation WILL delay absorption of all medication independent of how much protein you take.
Best diet that I have found to help PD patients with malabsorption due to constipation is one followed by patients with irritable bowel disease, or inflammatory disease like Ulcerative colitis / Chron’s Disease. This makes sense to me since some of the Parkinson genes like LLRK2 are associated with intestinal inflammatory disease or inflammation…
Here is an example.. A patient with Ulcerative Colitis will be asked to take lots of vegetables, but no salads, minimize dairy, lots of protein in form of meats and beans, lots of fruits, and little on way of breads and pastas!
This type of diet easy to digest.. lots of nutrition …balanced and because most foods are not processed they are easily absorbed and easy to pass through the colon.. thus, decreasing motility problems!
Key Points to remember:
Change protein diet ONLY if in end stage or advanced Parkinson’s and have ruled out medication changes i.e changes to generic, ruled out H.pylori, constipation controlled by increasing water, exercise, fruits, diet similar to IBS ( the latter not proven for PD by any clinical studies but rather recommended my own personal proven method and observation!). However, before you under take ANY changes to your diet or make changes to your GI constitution make sure you discuss thoroughly with your physician.
For further reading on the topic please refer to:
Curing H. Pylori Cuts Parkinson’s Symptoms, Published Jun 19,2013; Ed Susman MedPage Today
Fortune January 14,2013- Brand drugs vs. generic
FODMAPS Elimination diet for IBS
*one quick way to know if you have malabsorption or slow absorption if taking comtan/tasmar or other COMPT inhibitor or even stalevo is the time it takes for urine to get discolored or to turn orange. typically it take about 1 to 1 1/2 hr for this to occur if it takes longer than this than YOU HAVE an ISSUE with ABSORPTION in the GUT ( malabsorption!)
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas state assistant director for PAN (Parkinson’s Action Network). You can learn more about her work at http://www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at http://www.pdf.org or at http://www.wemove.org