About 40 people signed up to receive the protocol and updates as the program progressed. Some found the protocol a bit complicated to follow and several modifications were made. Due to the need to buy the right seeds and some specific equipment, the program only really got going in late October 2020. The protocol very clearly stated starting at a low dose of 0.5g ground seed powder per day which could be slowly increased each week and to monitor symptoms each week according to an extensive list of symptoms presented in random order. Participants were asked to attribute a grade to each symptom based on a simple 4 grade scale from 0 to 3, where 0 = absent or insignificant, 3 = Very severe or handicapping. The aim was to identify a few symptoms that that changed a lot rather than many that changed only a little. Participants were also asked to report any adverse effects, no matter how small and to pause the program and subsequently reduce or stop the dose. As soon as any symptom improvement was noted, the dose was blocked at that dose.
As of 31/12/20, a total of 8 participants had completed the 6-week program satisfactorily. A few more are still in progress. We do not know how many started, but we know there were several drop-outs due either to non- compliance and overdosing or to adverse effects ( worsening of symptoms or digestive problems).
We have made a provisional analysis of the results based on these 8 completed data sheets.
I wish to say a special thank you to the 8 participants for completing the whole process, buying the necessary equipment and trying very hard to stick to the niggling details of the protocol.
The primary objective to identify any high incidence symptoms that responded early to treatment was achieved. These symptoms were clearly identified and at the same time other symptoms were identified as being resistant. I don't want to give details at this stage in order not to influence those who started later and have not yet had time to complete and return their forms. 3 symptoms with zero or low incidence were removed from the analysis. The major trend is that the high incidence, high responding symptoms can all be grouped as "non-motor symptoms" and the those that resisted were clearly grouped as "motor symptoms".
The cumulative score over the 8 participants of the highest scoring non-motor symptom was reduced from baseline by 90%. 8 non-motor symptoms were reduced substantially.
The 2 highest incidence motor symptoms were unchanged. Out of 15 motor symptoms, 9 were marginally reduced, 5 were unaltered and 1 was increased.
Provisional results;
Non-motor symptoms: total symptom score at baseline: 70, Score after 6 weeks: 32, Symptom reduction 54,3%
Motor symptoms: total symptom score at baseline: 81, Score after 6 weeks: 69, Symptom reduction 14.8%
For non-motor symptoms, the cumulative symptom reduction was almost linear over the entire 6 weeks.
Of the 8 participants, 5 were ieadily dentified as high responders. Their results were very similar throughout. They appear to be a homogeneous group. The other 3 were also a homogenous group of non-respomders. Their scores were essentially unchanged over the 6 weeks. I wish to thank them particularly for persevering to finish the program even though they knew it was not working for them. This information is very important. We now have to find out why they did not respond when others did.
This distinction into 2 groups of participants, good responders and non responders and into 2 groups of symptoms, responding non- motor and non-responding motor is undeniable. It's black and white.
More to follow....
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I have since had a very long Zoom meeting with Prof. Jed Fahey . Jed has 20 years experience in sulforaphane research and has just retired. I discussed this experiment and decided to share some of the basic data with him in confidence.
We will need to get help from leading experts such as Jed Fahey to decide how best to analyse this data and what to do next.
This is what he said:
I just started looking at these spreadsheets. They are phenomenally interesting and well done. The quality of data, double-blind RCT or no, is better than many other clinical studies that get reported.
These results are indeed very exciting to me. I am anxious to get a friend or two in the neurology-space interested in your experiment. Even more so, I'm interested in looking more closely at the striking congruity/overlaps between our autism work and what you have seen (5 of 8 people responding very positively, and those 5 responded only in particular (non-motor) domains). In our autism work we had a very, very similar phenomenology.
-- Jed.
There will be follow-up posts and some attempt at interpretation when I have discussed all the results and background information and events with the 8 participants and with experts.
This may be a bit off-topic, but it is interesting that Prof. Fahey mentioned autism (ASD). It reminded me of a paper I came across last year, that also saw links between ASD and PD.
The Role of Alpha-Synuclein and Other Parkinson’s Genes in Neurodevelopmental [e.g. ASD] and Neurodegenerative [e.g. PD] Disorders (2020):
Your determination and willingness to help your fellowmen with PD are remarkable. I personally appreciate all your hard work. I only wish my husband was involved with his therapy protocol. He exhibits, even more now, symptoms of depression and apathy. I have tried my hardest to change that to no avail.
It appears that, just like B1, some people are not respondents or am I wrong?
If you take a look at the latest update, you will see that from the 8 who completed the trial, 5 responded very well and 3 not at all. Of the 5 good responders, nearly all the improvement was in non-motor symptoms. This result has a lot of similarity with the results obtained by Jed Fahey and Andrew Zimmerman when broccoli extract was administered to young people with Autism. A Zimmerman is a leading neurologist and we hope he will be able to give us some insight into what these results might mean.
He takes 2 capsules a day (as recommended on the back of the bottle) after breakfast. He is doing well but I can't pinpoint what is helping him the most. I know that Red Light therapy and Ozone therapy are the most effective alternative treatments.
Thanks so much for this. My husband did actually take the broccoli powder too ....45 days but no real difference. Sorry didnt monitor more effectively than that. Good we all try these things though.
Hi Levod,The biggest obstacle for an experiment like this (I won't call it a trial) was that it was based on a double hypothesis that one of the causes of PD was oxidative stress and inflammation, and that activating the Nrf2 pathway by sulforaphane could reduce the oxidative stress. There was some indirect evidence, but no absolute proof that either of these was true since it had never been tested for PD. Consequently, people who signed for this experiment did so because they believed that my arguments had some degree of credibility. As you can see, there were not many who were strong believers before the experiment. In such a case, you have to accept everyone who wants to participate without imposing conditions. This means not asking for changes in meds or supplements before starting. Now that we have some promising results, it should be easier to recruit more people for the next round. I have now asked for details of all meds and supplements from all the participants.
As for the side to side tap test, I know it well, but it may not be appropriate here, since it essentially measures motor capacity which seems to be unchanged over this short timescale.
Rhyoyhemis,The protocol was a 7 page document with the aim of standardizing the preparation and ingestion of a broccoli extract optimised to deliver sulforaphane with a high bioavailability. It also defined a symptom notation system associated with an evolutive dosing program. The protocol did not define a therapy. It was established specifically to deliver the results of this experiment and will be reviewed in the light of the results obtained. For this reason it is not being made public at this time.
Hi Rhyo,Is there a version that goes through to the end ?
Nrf2 is being plugged as the route to eternal life.
Don't believe all you read... But... but... my hair is growing thicker .. just a bit, but noticeably so ... and it's not white like before it's growing back black again ... ssshhh !!!
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Here is a supplement, PEA, that Parkinson's News Today says works well for PWP
Mucuna pruriens extracts
