What Parkinson’s research studies are you following?

[Krukar]

Ally,

I have been participating in a Michael J. Fox study for about a year now. Still no results but I like the idea of sharing my experience with Parkinson’s. Blessings, Mike

 

[Ally]

I’d love to know more if you’re at liberty to share, Mike!

[Krukar]

Ally,

Not much to share. These studies seem to be long term. For me the most important thing is to stick with it. Who knows when they will have good results. But I will be waiting with my best self! Blessings, Mike

 

[Alan M]

Funny you should ask this, Ally!  I’ve been trying to break into the MJFF – PPMI study for months now.  But because I don’t live in the USA I’m not eligible to participate as a patient.

I recently learned of a NZ / Italian collaboration through Daphne Bryan who mentions a group called the HDT Foundation.  Sadly, its founder, a Dr. Costantini died in May 2020 leaving the HDT without his leadership and with a black-hole-sized void.  Although beaten by his loss, the HDT intends to push to continue his legacy and to seek attention for the potential of his discovery to disseminate their ongoing research and increase expertise to continue his work.

I know of no other initiative here in NZ and haven’t had much luck sourcing PD research teams in Aussie.  Does anyone reading these posts have any leads as to where a body could search to locate means of becoming involved (ie. participate in) future PD research projects?

For more info about the HDT Fdn, see Bryan PhD, Daphne. Parkinson’s and the B1 Therapy . Ex Libris Digital Press. Kindle Edition.

[Ally]

Thanks for sharing, Alan. I hope the HDT Foundation can secure some good leadership and continue on!

Have you checked Bionews Clinical’s site for projects nearer to you?

[MattR]

I am interested in almost all research on Parkinson’s. Probably the most important to me, though, are the following two: Ambroxol and High Intensity Interval Training (HIIT).
Ambroxol, the active ingredient in an over-the-counter expectorant, appears to have an ability to improve the action of the lysosomal system (kind of a take out the trash, ie. alpha synuclean, system) of neurons. From my understanding, researchers appear to believe that Ambroxol in doses of approximately 1.2g/day may slow the progression of PD. In the case of HIIT, some recent trials appear to show stronger evidence that HIIT especially, but all exercise generally, may also slow the progression of PD.

[Ally]

Thank you for sharing, Matt. I’m also interested in the numerous benefits of HIIT. Thank you for sharing about Ambroxol as well.

[Deborah McDonald]

Exenatide sounds quite promising. In trials it seems to slow down and possibly reverse PD.  This is being researched by Cure Parkinson’s Trust which uses drugs already tested for use. This drug is used for type 2 diabetes.  They are up to level 3 trials

[Patricia Conner]

I am dual citizen and i find that it depends .  I am very bias to the European, i am french/USA, as older countries might not have know the name but knew what worked and did not.  Churches plaza were built so people would have family gatherings and make people MOVE.  Also, the need of forgetting it by  games etc so you laugh is as important by the older countries.  The teach you how to live with it,.  The Russians and latins stressed swimming and spas with special water. Etc.     I found the Americans are stronger in scientific research and medical research.  But their results are far in the distance so i will probably not profit from it.  I believe INTENT is #1 as use lower amount of dopamine and both continents stress that.  I agree with European and do not believe demencia, constipation and other diseases are a sign of Parkinson but more a side effect due to muscle  age  but agree with both that these things must be treated in the over all picture. .  I believe in European belief that as little as possible medicine should be used as balance is the most important.  Just giving more dopamine and médecine have not proven effective enough to justify. Less is best.

I think uSA for YouTube as we can now make clearer decisions. Based on our own individuality.

[Lori DePorter]

I am an alumni of the university of Pittsburgh. They are doing cool stuff with Zebrafish!

[Ally]

Cool! I’d love to know more, Lori. 🙂

[Lori DePorter]

https://parkinsonsnewstoday.com/columns/zebrafish-research-gives-me-hope-parkinsons-patient/

my column is based on an interview with the researcher at University of Pittsburgh. They are quite the interesting little fish.

 

Lori

[Laini Weitz]

Matt R- I too am following info about exercising and am vigorously pushing myself to 80%+ capacity 5-6 days/week. Sometimes it’s HITT. I have read several studies about Ambroxal but it’s not dispensed in the US so I resort to NAC. Do you know of specific studies currently run on Ambroxal?

thx

Laini

[MattR]

Laini Weitz:

Wow, you are doing great with the HIIT! Keep it up!

Regarding your question about Ambroxol* availability in the USA, you are correct that it is not available in the US. However, if you live close to to US southern boarder, you can get it in Mexico where it is given the trade name of “Oxolvan”. It is sold in tablet form with 20 tablets containing 30mg of Ambroxol dosage per box. Note that this means that in order to reach the target of 1.2grams per day, you will need to take about 40 pills per day. In Mexico, the cost for a box of Oxolvan is ~$1.00~1.50. In other countries (like Germany) the dosage is higher (70mg per pill) but the cost is also substantially higher (maybe 10 euros per box).

You commented that you are taking NAC. Can you cite any trials supporting the use of NAC with Parkinsons? I am always interested keeping up with the latest disease modifying medications, as long as there is trial data or serious research papers that back it up.

best regards, MattR

[MattR]

Sorry, two comments/editorial fixes required:
1. Your spelling of Ambroxol was incorrect, which is why I put an asterisk by my first use … not trying to be picky, just thought you might have troubles doing google searches if spelling is off.
2. Regarding following sentence: “It is sold in tablet form with 20 tablets containing 30mg of Ambroxol dosage per box.”, I think some might be confused. I should have said that each box contains 20 tablets, with each tablet containing 30mg of Ambroxol. Sorry for my poor sentence structure… 🙂

[Ellen B]

I just heard about a new drug developed by Zhittya Genesis Medicine.Its a biological drug, FGF-1, which is capable of growing new blood vessels  in a process known as angiogenesis.  They have just recently started human trials, but the results appear to be amazing. They are touting this drug as a “possible” cure for Parkinson’s. Go to https://www.zgm.care/to see more.

[Frank Mundo]

I am following ( and participating in ) the testing of sulforaphane with Dr. Albert Wright,  Low doses of sulforaphane taken weekly appear to be slowing or possibly halting the advance of parkinsons – particularly noticeably in non-motor symptoms – constipation, urinary urgency, fatigue. There actually appear to be some rollback in symptoms , explained (perhaps) in the restoration of mitochondrial dysfunction (neurons are off line not dead).  What attracted me to his research work was the soundness of his research, the fact that he focused on tapping Nrf2 pathway and developed a unique way to extract consistent (low levels of sulforaphane and experimented developing evidence of efficacy of the compound over 30 months with more than 20 people.  His research / approach is described in patientReseacher.com.  Frank Mundo

[Ally]

Thanks for sharing, Frank. Please continue to keep us updated!

[Ally]

Thanks for sharing, Frank. Please continue to keep us updated!