It’s a lonely road with PD. : I sure wish I... - Cure Parkinson's

Cure Parkinson's

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It’s a lonely road with PD.

32 Replies

I sure wish I had someone in real life that was interested in learning about brain health and gut health or at least interested in hearing about what I’ve been trying to learn. I have committed to learning every single day for over a year now. I started out knowing literally nothing, totally clueless, so now I am one notch above clueless but I’m really determined because I want to do anything I can and I find it really fascinating.

Question for y’all; do you have friends or family who are interested in the research you do? My children are more interested than anyone else but they are 12.

So I read and listen to doctors daily, literally daily and then I have no one to share this with except strangers online.

Are there any other groups or organizations or something that a novice can join to find others who love learning about neurology?

Only a few people know I have pd.

32 Replies
GinnyBerry profile image
GinnyBerry

Any chance you live near a university? Students often have journal clubs where they get together and talk about research papers in a subject of interest to them.

park_bear profile image
park_bear

This is the place! This is what we are here for!A number of very knowledgeable people are regulars here.

in reply to park_bear

Too many hostile people PB which is why I’m inquiring about alternatives. Years of familial verbal abuse, specifically my abusive Dad with Pd brought on my Pd. turning the other cheek and “just taking it” brought on my young onset PD. I’m deeply convinced of that. I now have a very low tolerance for being verbally mistreated. So, I hope to find another means of connecting with people learning about brain health.

I need to protect my emotional peace to protect my brain. We all do.

MoJoe2 profile image
MoJoe2

Firstly learn how to access well written scientific articles from the Internet. There is a rich resource out there, and its sometimes difficult to find out how to read or save them. If you go to university it is a lot easier, just go onto scopus or the like and download them free. If you are not in the academic zone that you need to do two things, (1) Find the articles you want, and (2) using a handy site called sci-hub.se, and download them using the DOI from the publication. One excellent site to use to find what is available go to x-mol.com, its a Chinese site and initially you will be bewildered, but stick with it and you will quickly become conversant. The enlish version is always available. Remember that recent articles from 2021 onwards may still be embargoed, but earlier articles are available and generally be printed or saved. Just remember that you need the DOI from that article. It starts with 10, paste all that number into the sci-hub site and voila, its all there. PM me if you get stuck, joecave@xtra.co.nz. Start searching with the keyword "ethanolamine plasmalogens". Also articles that have a green start are free regardless and really easy to get, you don't need that DOI, just go to the bottom and download where it says "read article here". Using the sci-hub.se you get the non green ones (most times) free anyway.

Regards

Joe Cave

in reply to MoJoe2

Oh thank you so much Joe! I’m excited to start this! And ethanolamine plasmalogens, I'm intrigued! Plasmalogens bring to mind Dr. Goodenowe. When I get myself really out of my element and confused I tell myself that at least it’s good brain exercise!

MoJoe2 profile image
MoJoe2 in reply to

You don't have to use x-mol.com, the sci-hub site is the key. You just need the DOI to enter into that site. Be careful with pasting the correct info.and avoid any with tw in the suggested source, if you paste that DOI it somehow links to a non productive page. If that happens then take a photo of the DOI and manually enter it. . Occasionally the publishing companies manage to shut down one of the many sci-hub sites but the woman who publishes these just starts up another one. sci-hub.se has been stable for a long time now.

Bolt_Upright profile image
Bolt_Upright in reply to MoJoe2

Thanks Joe! This is one of the best posts I have ever seen!

in reply to Bolt_Upright

Agreed!

chartist profile image
chartist in reply to MoJoe2

Joe,

I am very interested in knowing what agonists, precursors or promoters you have found for "EP"?

Art

MoJoe2 profile image
MoJoe2 in reply to chartist

Not entirely sure what you are asking. Precursors to EP are alkylglycerols , by taking those you short circuit the peroxisome activity and introduce the precursor directly to the endoplasmic reticulum were it converts to a plasmalogen. In our process we actually make a plasmalogens supplement from a marine source whereas Prodrome supply a synthetic mix of alkylglycerols and an attached DHA which then goes through the conversion process in the endoplasmic reticulum, again short circuiting the peroxisome process. I do not wish to self promote on this site, just keen to kick the elephant in the room out of here by providing a way to acquire knowledge that you can trust. Elements of a good plasmalogen are a higher DHA vs EPA and an ethanolamine type of plasmalogen. Chicken products fail because of a lack of DHA , and seasquirts partially fail because the EPA>DHA. I believe Goodenowe (Prodrome CEO) has financial backing from the Michael J Fox Parkinson's Foundation so both of them must believe in the usefulness of plasmalogens for P.D.

chartist profile image
chartist in reply to MoJoe2

Thank you, Joe!Interesting information you are introducing here and new for me.

Art

in reply to chartist

healthunlocked.com/cure-par...

in reply to chartist

Art, maybe you will find this interesting. Maybe…

nature.com/articles/nri.2015.4

in reply to MoJoe2

Canadian company received MJFF funding

“This grant will provide a deeper look into the role of plasmalogens in the development and progression of Parkinson’s disease,” says Dr. Shawn Ritchie, CEO of MLD and COO and CSO of GraySpace Therapeutics. “With GraySpace focused solely on the development of MLD’s plasmalogen-based therapeutic technology for both Alzheimer’s and Parkinson’s disease, we are excited to have this rare opportunity to better understand how plasmalogen deficiency drives Parkinson’s disease progression and treatment response in a highly characterized patient population.”

MLD is the parent company and current primary shareholder of GraySpace Therapeutics.

grayspacetherapeutics.com/n...

in reply to MoJoe2

en.x-mol.com

sci-hub.se

ethanolamine plasmalogens. 👍🏻👍🏻

Thank you Joe! And thank you for your contact info

I’m going to message you mine.

I will be posting my daily research elsewhere and really hope you will check it out!

Bolt_Upright profile image
Bolt_Upright

NR: You could join the Marc Zoom calls. There is one starting at Noon Eastern: us02web.zoom.us/j/833522248...

us02web.zoom.us/j/83352224879?pwd=VUlnUy8vck5lcHZlUUhZcjBQWG9idz09

MoJoe2 profile image
MoJoe2

If anyone gets stuck navigating xmol.com PM me. The advantage of that site it is an encyclopedia of articles relating to the keywords you entered. Ethanloamine Plasmalogens are very important in AD treatment, and anecdotal evidence suggests that it can help markedly with P.D. and M.S.

in reply to MoJoe2

Thank you! I will get in touch via email.

Kia17 profile image
Kia17

If you are really interested and have time, why not creating a YouTube channel with weekly,or even daily updates and speaking about what you have learned and asking viewers to share with you their opinions. You can also make a website linked to social media accounts for even more interactions with your audience.

in reply to Kia17

I’m making a website and have a blog. Thank you for the encouragement! I hope / wish that you will do the same!

Kia17 profile image
Kia17 in reply to

Thank you!

JohnPepper profile image
JohnPepper

Have you looked at what exercise does that reverses the symptoms of Pd? If not,then you shoiuld start by looking at these two videos:

The Mayo Clinic Studies:

healthunlocked.com/cure-par...

The Annals of Neurology:

healthunlocked.com/cure-par... Mayo Clinic Studies:robic-exercise-evidence-for-a-direct-brain-effect-to-slow-parkinson-disease-progression.

As you already know, there is no medication that either cures PD or reverses any of its symptoms.

There is one group that slows the progression and they are MAO-b inhibitors.

If you REALLY WANT TO REVERSE YOUR SYMPTOMS then start doing some HIGH INTENSITY AEROBIC EXERCISE! Fast Walking has been proven, by many people, including myself, to reverse the symptoms of PD by producing BDNF and GDNF, the latter of which helps the brain produce more dopamine . You may already know, PD is caused by the lack of dopamine. So, MORE DOPAMINE MEANS LESS SYMPTOMS!

There you go! If you are short of cash then, wlking on a playing field with an uneven surface gets the best results and costs nothing! But if you can go to any Fitness Club that manages Organized Fast Walking, then you're A for away!

Contact me to get all the details about how to safely start fast walking on your own! It costs NOTHING!

Trudy2020 profile image
Trudy2020 in reply to JohnPepper

Jo hi, does fast walking with a rollator qualify? My balance is bad so I do use a rollator at times.

JohnPepper profile image
JohnPepper in reply to Trudy2020

I don't know what a rolator is but it sounds like a treadmill . Any high yntensity aerobic exercise helps the brain to produce more dopamine, which reduces the symptoms.

If you have balance problems, while walking, then you are not concetrating on wlking properly. You need to think about how you put each foot down on the ground and push forward on the back foot. You must involve your conscious brain now. Yoiu subcoscious btrain does not work too well with PD.

Trudy2020 profile image
Trudy2020 in reply to JohnPepper

Thanks John. Sorry that I’ve upset some here. Life’s too short, move on.

in reply to JohnPepper

This has nothing to do with the subject. Please start your own post if you wish to discuss your walking.

in reply to

Not the subject of this post. He has a tremendous volume of other posts discussing his walking. This is not one of them.

JohnPepper profile image
JohnPepper in reply to

On the contrary. These studies confirm that high energy aerobic exercise, which fast walkking is, produces GDNF and BDNF which repairs damages glila cells with the result that the brain get more dopamkine suppies and our symptoms get better.Do you kmnow of any medication that does that?

in reply to JohnPepper

Not the subject of this post. Stop detailing posts.

JohnPepper profile image
JohnPepper in reply to

I am an OLD MAN and don't like fighting with anybody. What is the dsubject of this, if it is not looking for a way to reverse PD symptoms?

jeffmayer profile image
jeffmayer

I've found the only people interested are the ones with Pd no one else seems to care

LAJ12345 profile image
LAJ12345

I’m the spouse and the one who is interested and hubby is the pwp and completely disinterested!

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