Poop for Parkinsons was created to provide stool from the healthiest 0.5% of US adults to people living with Parkinson's Disease. Poop for Parkinsons was founded by Al DeVincent after seeing how routine FMTs benefitted his dad's symptoms with Parkinson's Disease. Multiple studies have shown that the microbiome in the gut of people with Parkinson's Disease is severely lacking in the quantity of beneficial bacteria (links to studies below - OR LINK IT HERE IN BLUE). On the other side of the spectrum, highly athletic, young adults aged 18-29 in great physical and mental health have quite the opposite gut microbiome.
The idea of a FMT (fecal microbiota transplant) is that by getting the microbiota material or stool of a healthy person into someone with a compromised gut microbiome, that it could potentially improve their health. In Parkinson's, it could potentially alter the course of the disease's progression.
What we're looking to do is place stool of these highly athletic and overall healthy individuals (read about our donor criteria below) in the colon of people with Parkinson's to reestablish their gut microbiome in the most beneficial way we can. However, we believe this is best done with repeated and regular treatments. A one-time FMT can be beneficial and has shown in studies to alter the bacteria in the gut microbiome for over a year later, but generally the beneficial effects diminish overtime.
Step 1
You request a FMT sample.
Step 2
We'll call you to walk you through the process, provide you with resources, and answer any questions you have (you should and probably have a lot).
Step 3
Based off your preference, the donor will either ship you a small mason jar of stool solution or a collection of encapsulated stool (capsules).
Step 4
You'll perform the FMT at your home either via enema or by consuming the capsules.
Step 5
One day after the FMT, we'll collect your feedback to document the results of the FMT (what reduction in symptoms noticed).
We provide anonymized questionnaires & test results. And we’re currently providing anonymized physical fitness & stool pictures, but we may not in all instances. We also systematically & publicly track and report results.
There are differences between everything. Sex, race, living conditions, living location, diet, race, ethnicity, etc.. And there are even bigger person to person differences. The vast majority of these differences in the studies are on the genus level of bacteria, and are merely different percentages of genus-level bacteria. There is no good evidence that these differences matter for FMT safety or efficacy. Universal donors are as effective as any other type of donor. Donor matching is purely speculative, and should not be focused on until basic donor quality criteria have been met (which no study to date has done).
Antifreeze is added to protect the microbes from freezing damage. However, it’s not entirely known how important this is for FMT efficacy. And adding antifreeze dilutes the amount of stool you get per capsule. So we leave it up to you to decide. By default we’re using maltodextrin, since glycerol/glycerin is a laxative. But you may request glycerol. The antifreeze mixture makes the end product much softer, so if you intend to make your own capsules, you might find it more difficult. If you let us know beforehand we can make it firmer. We could also do pure glycerol, which should reduce the issue of capsules melting.
There are detailed directions with pictures and videos at http://HumanMicrobiome.info/FMT.For capsules, you can simply swallow them with food or water. It may or may not be best on an empty stomach. Anywhere from 1 to 60 capsules per day is a reasonable dose. For the lower-route, you can defrost a piece of stool by placing it into a zip-lock bag with filtered water or saline, and let it sit till it becomes a usable liquefied solution. You can then perform a deep retention enema. If you would like to make your own capsules, you can defrost a piece of stool by placing it into a dry zip lock bag, removing the air, zipping it shut, and placing the bag in room temperature water till it thaws. Stool sizes vary, but a medium sized stool could probably make hundreds of capsules.It is unknown what the ideal procedure is. I personally do a daily oral dose and once per week deep retention enema. And use around 1/3rd to 1 tablespoon per dose. With the larger amount being for lower route.
Generally there are premade capsules, or stool samples split up into small pieces that can be individually defrosted and used. Generally this would be all anyone would need. But if you’re interested in some other preparation you can let us know. We ask donors to try to split up each stool into at least 10 pieces, but ultimately it's up to them. Our donors have leeway to set their own prices, etc.. But we'll try to provide as good of an estimate as possible of what you could expect to receive. A single donor's stool can vary significantly in size. One teaspoon of stool can be enough for one upper or lower route application, but you can use more as well. We can add water to make a ready-to-use enema, but water crystalizing during freezing is what damages microbes. So it’s probably best to add antifreeze in this case.
It is not entirely known. It should stay safe for years, but efficacy may decline over time. Personally, I found that a sample stored for over a year didn’t seem to lose any efficacy. If you use a vacuum sealed bag and re-seal it after removing a piece, that should protect against oxygenation/freezer burn. You can find vacuum seal kits for around $50. If you purchase a sample mixed with antifreeze that should provide extra protection as well.
Donors are trained to make the capsules and samples. They store them in their standard freezer unless otherwise specified/requested. There is the possibility to request things such as putting it on dry ice immediately, using vacuum sealed bags, etc.. There may be extra costs associated with those options though. For example, dry ice costs around $10 per day. And if you’re going to store it in your standard freezer anyway, it may not be worth the trouble. For vacuum sealing, you’d either need a $50 kit at home so you can reseal them each time, or we can put each piece of stool in a separate vacuum sealed bag. Shipping is generally done with dry ice, which keeps the stool frozen at -80 °C. But we can ship fresh stool, via next day air, using ice packs instead. We’re currently using double encapsulated, vegan, delayed release capsules. Size 0 inner, 00 outer. For a child, you could request to forego the 00 outer so it’s easier for them to swallow.We’re using compostable zip lock bags for both health (microplastics) and environmental reasons. Unfortunately they’re not durable or long lasting, so we have to encase them in a second, stronger plastic bag.
Almost everything to do with this is covered here: http://HumanMicrobiome.info/FMTIf you don’t see an appropriate category try searching the page for a keyword. You do not need to thaw stool before taking it orally. For the lower route, fast thaw is best by putting the frozen stool into room-temp water/saline. Freeze-thaw cycles damage microbes, so once you thaw any portion, it’s best to use or refrigerate it, and not refreeze it.
Al DeVincent - Founder
My name
Ben Gravens - Support
DISCLAIMER: poopforparkinsons.org is not a medical provider, and does not provide medical advice.
The information on our website and email are for informational purposes only. No material on our website or email is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment, and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read on our website or email.
FMT is not an approved treatment for Parkinson's Disease or any disease. The statements made within this website have not been evaluated by the Food and Drug Administration. These statements and the FMT product/stool offered are not intended to diagnose, treat, cure or prevent any disease.
Office: 100 Summit Drive, Burlington, MA, 01803
Call: 978-770-8484
Contact: hello@poopforparkinsons.org
Copyright 2022. All rights reserved.
Office: 100 Summit Drive, Burlington, MA, 01803
Call: 978-770-8484
Contact: hello@poopforparkinsons.com
Copyright 2022. All rights reserved.