[Jim]

Hi, Wanted to mention, Since it’s ALS awareness month. Thought people here on the forum including myself could also post on various social media sites the Interactive ALS flyer, sites like FB, Twitter, Instagram, Tiktok etc. For instance I recently posted a photo not related to ALS a few months ago on ‘imgur and it got 157,000 views within a couple days. These social media sites do get wide coverage. May want to consider not only stating ‘May as ALS month on the flyer, but also giving a link to donate money. A user friendly link easy to use, taking any amount of money donations, non-profit research type organization. Do you know an organization which would be worthwhile? The flyer could also have member faces on it, ‘The many faces of ALS! I hope members will give their ideas, then we can brainstorm what’s the best direction. As far as a viral event, that’s a good idea, although could be tough with Covid taking lots of attention, but maybe linking Covid and ALS in a flyer could work, to get peoples attention! ‘You know Covid, Do you know the many faces of ALS! Just some above thoughts, Let’s get some more input from members here!

[Jim]

Richard your Correct, not enough people are aware of ALS! Really Surprised only a few States/Governors have declared May an ALS awareness month! Although, I’ve been living abroad for many years, would still submit the ALS Information to local news and radio stations in Florida where I grew up and would look into submitting this info to the Governors office. The States which haven’t officially declared May an ALS month, should! Has enough been done, apparently not! Best to move with this relatively quick, keeping it in May. I’m on board with you Richard with this important initiative and with Everyone here on the forum!

[Jim]

If there is any article/trial which states Sodium Benzoate can be neurotoxic, I’d definitely stay away from Sodium Benzoate! Looks like Tudca and many other supplements have shown ‘Promise with slowing progression! Best stick with the supplements that have some solid foundation within trials and light exercise (my opinion)! Thank you Isabella for your input! All the Best!

[Jim]

Think what Richard implied was doctors should concentrate more on quality of life, not only longevity. The question wasn’t ‘What is quality of life with ALS, that can be objective, different from person to person! Quality of life.. As for myself, I was very active swimming, hiking in mountains, daily walking in the park, exercise at the gym and working! It’s been a free fall ever since ALS, can’t do any of those activities! But I do try to find different and new activities to keep busy and upbeat! Don’t know when my time is up, trying to make the most of each day!

[Jim]

Yes, Ketamine is a very serious drug. It’s very clean feeling, very, very hallucinogenic and can have out of body experiences! Some of these trials are ridiculous, like the researchers are just trying any substance. Hope these trials don’t cost too much money! Doesn’t seem like ketamine would slow any ALS progression, But Not sure how Ketamine works on a cellular level with Neurons. There for sure would be lots of freaking out!

[Jim]

Hi Richard, Your definitely doing overtime, with your research into ALS. All the articles are Very Very Appreciated! The last article hit home, as the article stated injury/infection plays a role with ‘astrocytes resulting in miscommunication/dysfunction. At first I was thinking air/traffic pollutants day after day ‘Could have caused ALS, But cronic lower Back ‘Injury for years aggravated by continued harsh work conditions makes more sense! Could have been a combination of factors. As we all know, understanding possible causes helps to develop treatments. Wondering how many other PALS can pinpoint an injury they feel could have contributed to their ALS symptom onset? Again, Richard, Thanks for all your insight!

[Jim]

Interesting! And Thank you ‘Dagmar for passing on that information/article! Lots of research and trials have been going on, how effective many are in slowing down symptoms is questionable; But very good to see progress is being made! We definitely need good news! It’s been known mitochondria (dysfuction) plays a role in ALS. Would be extremely interesting to know which recycled drugs they will use and if the drug slows or stops symptom progression! Let’s keep up with their progress! Kind of along the same lines as the article. I’m not a neurologist, but still wanted to add, I’ve been self medicating, plus mild exercise. Started the medications/supplements in October. About four out of the eight supplements are probably near the top of the list dealing with ‘Mitochondria dysfuction (Pterostilbene, Lipoic acid, NAD booster, Tudca and TumericCurcumin). So far, so good, but the next few months will tell more with my supplement experimentations. Stay strong and never loss hope! Let’s see if these studies show more promising results. We need some breakthroughs! Please keep me/us informed!

[Jim]

https://grantome.com/grant/NIH/R03-HD078447-01                                                                     Above is the link to a Study with Sodium Phenylbutyrate (used in Amx0035) and Sodium Benzoate. The results of the study are on the page toward the bottom, click. If the link doesn’t work, I’ll repost it! Keep in mind, many of these drugs are recycled and can treat several medical issues, as the above study dealt with hyperammonemia. Best Regards, Jim

[Jim]

Hi, I’m new to the forum, but have been reading a few articles from the forum over the last month, very informative! I’ve had ALS for two years now, it’s been difficult for all of us! I’m glad I can still walk abit (with walker) and have the use of my arms and using noninvasive ventilation at night now. Staying positive and not stressing out is so important! I wanna get to the point/topic. The past 2 months I’ve been taking an array of supplements, TransResveratrol, Curcumin, Glutathione and Co-Q10 etc. During my research/reading I came across some information about Amx0035 (Sodium Phenylbutyrate) and Tudca (Tauroursodeoxycholic acid). Tudca is inexpensive and overall easy to obtain, but the Sodium Phenylbutyrate is very expensive (1,000-5,000usd). I read an article which claims there is a possible substitute for Sodium Phenylbutyrate. I will put a link below! The article/study says Sodium Benzoate (inexpensive/10.00usd and easily found) can be a substitute or can be mixed with Sodium Phenylbutyrate of course lowering costs. If this is true, more people should know about it and of course I could be wrong or my theory is wrong, but wanted others to look into it. Please read the article and look into the two drugs used in Amx0035. Do you think Sodium Benzoate can replace Sodium Phenylbutyrate effectively? Wanted everyone to be aware of above info and please research it! Opinions are welcomed.. Wishing everyone all the best and stay strong!