Webinar: “Nutrition Optimization in Patients with ALS”

[Jean-Pierre Le Rouzic]

Thanks John,

Nutrition is indeed of the utmost importance for pALS.

There are several calorie calculators for pALS, including on my website padiracinnovation.org
They are based on the work of Dr. Edward Kasarkis, Medical Director at the University of Kentucky.

[Deleted User]

Something I ran into on the Gut Biodome  in the Neural Regen Journal:

Published in June 2021

The gut microbiome: implications for neurogenesis and
neurological diseases
https://www.nrronline.org/temp/NeuralRegenRes17153-449965_122956.pdf

 

This is fairly dry reading but it is a good outline of the current status of research on this issue.

[Jean-Pierre Le Rouzic]

Thanks for the link you gave, but it is a temporary file.
It can be downloaded again here

[Dagmar]

Reminder: this webinar is – – Thursday, July 29th 2021.

https://register.gotowebinar.com/register/2458836070767490320

[Jean-Pierre Le Rouzic]

I think that a very important step has been achieved in understanding the mechanism of how misfolded TDP-43 aggregates in cells.

This is important as misfolded TDP-43 aggregates has been identified since 2006 by Virginia Lee has one of the most common pathological feature in all forms of ALS (> 97%), half of FLD dementia as well as a quarter of Alzheimer cases and a significant number Parkinson cases. Indeed TDP-43 proteopathy mirrors other well known proteopathies that are found in Alzheimer or Parkinson diseases.

Scientists in India found that acidification, a process which happens in aging and which results from metabolism (hence my post in this thread), results in TDP-43 misfolding.

I blogged about it today on my web site padiracinnovation.org.

Indeed it’s only my own opinion that it’s important, but it’s well known that I am not someone who react very enthusiastically to most publications about neurodegenerative diseases.

[ASOKAN]

Hi,

I was diagnosed with LMN Predominant MND  in March 2021. Now I am on Aravon IV(edaravon) and riluzole. Other medications are Renerve D, Evion LC, Calcium Supp with Magnesium. Currently I am also having Homeo medicines along with the Allopathic treatment. My Neurologist is generally against any alternate therapy. Recently I was advised to consult a doctor in Kochi, India who advocates Vitamin C therapy along with other nano medicines and nutrients. They are also into Hyper Baric Oxygen therapy.  Please advise if this could help in slowing the progression of the disease.

Best Regards

[Deleted User]

Hello Asokan,

You may find some info on the ALSUNTANGLED website. They do a lot of investigations in MND supplements and alternative medications.

[ASOKAN]

Thank you John.

 

 

[Dagmar]

Akosan,
I agree with John in that you should check out what you are currently taking against the reviews posted on the ALSuntangled site: https://www.alsuntangled.com/

Remember, if any of those off-label and alternative therapies really worked for ALS – – the world would hear about it. They would be front-page news.

Also, consider that over-whelming (over-dosing)the body with too many substances & supplements can make them no longer part of the solution, but add to the problem.

… while we wait for the webinar recording to be posted, here is an article on optimizing nutrition for the ALS patient: https://alsnewstoday.com/news-posts/2019/08/01/optimizing-diet-als-patient-nutritionists-view/

[ASOKAN]

Thank you, you are right it should get a lot of publicity. There are 4 or 5 clinics  offering Stem Cell therapy also in India. They do not divulge any positive outcomes to the therapy. In my case the progress is I guess is slow!

In March I could climb stairs without holding on the railings, but now I have to hold the railings anf one floor is the utmost I can do. I have a physiotherapist who does repetitions on one day and holding position the next. Main Issue now is climbing and difficulty in walking which i can for about 6 mins 280mtrs.

Thanks for your advice, shall keep in touch.

Best Regards

[Dagmar]

Asokan, …just a suggestion: have your physiotherapist look into the program Original Strength https://originalstrength.net/ I found it early on in my ALS and having been doing the therapeutic movements even now, 11 years later. It is a way to help your brain manage communication to muscles that are losing motor neurons. I wrote about my experiences here:
http://alsandwellness.blogspot.com/2015/10/a-language-that-speaks-to-all-bodies.html
and here:
http://alsandwellness.blogspot.com/2015/07/do-you-rock-n-roll-als-exercise-tips.html

[ASOKAN]

Hi,

Thank you, I shall show it to my physiotherapist.

Best Regards

[Jean-Pierre Le Rouzic]

> There are 4 or 5 clinics offering Stem Cell therapy also in India. They do not divulge any positive outcomes to the therapy.

In India as elsewhere, there have been official warnings about “stem cell clinics”.

Stem cells aroused a huge craze a few decades ago, it was seen as a solution to all problems. But in the end it didn’t solve anything at all.

[ASOKAN]

Hi,

The issue is when there is no known cure and these clinics offer wonder treatments, you do get tempted to try it. My Neurologist told me that if he himself was the patient, he would not take that chance. But generally the Neurologists are mostly against any type of alternate therapy. Any way since my condition seems to be slow progressing I guess I should not venture into more risky treatments. Thank you for your words.

Best Regards

[linda tidwell]

missed it on July 29th     hoping to be able to listen to it when/ if replayed     thank you so much