What medication are you currently taking?

My husband has been on it since April and although we thought he saw an increase in strength, that seems to have disappeared. We’ve really seen no positive signs of it working lately. Perhaps he’s on the placebo. We were told by our doctor that we’d never know if he got the drug for the first half or not.

Anyone else notice a slowing of progression?

It seems to have an effect on me. For years before diagnosis I have had an unsteadiness in my hands, sort of like with Parkinson. It appears much lessened most days. Also seem to have a slightly easier time turning in bed. Perhaps hoping too much? Last month was the half way point of study.

Among the many challenges I experienced during my early months with ALS was its effect on my perception of time.

Before ALS, I had pretty much meandered through life in full confidence that many more years lay ahead of me. But with the onset of ALS, all that changed. Time suddenly became significant; I had ALS, and the clock was…

Read more

I also have bulber ALS. I cannot talk at all now. I sund lke a garbage disposal when I seak. Nothing intelligible. I would really like to have my ability to speak back, but that ship has sailed I think.

Husband has been on it for over a month. Don’t see any changes.

I thought i was too but subtle things seem to be shifting/stopping. I hope at the end of the trial they tell us if we’ve been on placebo or not.

I hope to see a treatment that will restore functions. I would love to be able to walk again.

I was diagnosed Bulbar ALS in June 2025 and at that time I started to have some speech difficulties and when I started to take Nuedexta, improves my speech but as the illness progresses, the improvement was disappearing.

I am participating since May, and no positives changes so far. Maybe I’m in the placebo group (25% chances).

I think I would like to see more BCI integration with robotics. While all this research is happening around us, we have to think realistically. All of those college level degrees have worked for decades and we only have 2 drugs for most of us. Making life livable with robotics make things realistic, giving a pALS the ability to get up and…

Read more

Anyone else in the NUZ-001 trial? I’ve been on it for 9wks now, seems to be working in some positive ways.

What is NUZ-001:

• Oral small-molecule mTOR inhibitor that promotes autophagy.
• Clears toxic TDP-43 protein, a key ALS pathology.
• Aims to slow functional decline and protect motor neurons.
• In Phase 2/3 on the HEALEY ALS Platform

Do keep us updated on how you are doing.

Best wishes for improved speech and swallowing!

I will start taking this medication today, hoping it will help with my swallowing or language.

Great summation Tom. I want to read your notes and the article over again!!

The article leaves me wondering what I can eat/drink to optimize my gut biome.

The mention of the Vagus nerve made me wonder how relevant my own experience with this nerve is. I would pass out on the toilet when I was straining. After a few of these episodes that…

Read more

Sometimes a movie unrelated to ALS can leave us inspired and motivated to make the most of our lives despite our ALS.  For me, it’s  “The Martian,” starring Matt Damon, and I enjoy watching it again and again. 

It’s a story about an astronaut who is left behind on a far-off planet through no fault of his own. Instead of feeling…

Read more

A very helpful summary! Thank you for taking the time to write this.

I find that most all of the articles (blog posts) on this site to be informative — of course, they focus on nutritional interventions — although these are healthy gut habits, the jury is still out regarding healing ALS.

here are my Cliff-Notes….

The Protein That Cried Wolf – Simple Summary

This article challenges the common view that misfolded proteins (especially TDP-43 in ALS) are the main villains in a disease like ALS. Instead, they may often be distress signals or incomplete rescue attempts, with much of the damage coming from the brain’s overactive…

Read more

I got to the end last night. Oddly, I felt good from having read it. It left me hopeful!! The article presents the current snapshot of ALS in all it’s complexity. While it’s difficult to understand completely (or even partly), it’s assuring that ALS is being studied in depth to find root cause(s). My eyes have been opened more. Thanks Dagmar!

Hope your visit was great! Glad your ALS was kept in check.

I was able to travel from WI to MN to go to my nieces wedding. Some of my family members advised against it but I really wanted to go and I did with a lot of help. It is probably the last family gathering I will be able to attend. I had a really good time. The ALS was good to me by not having me have a saliva attack or anything else unpleasant.…

Read more

When I read this article, I wondered if it would have made a difference in the results if the researchers also looked how many were sporadic vs. genetic onset.

We’ve learned to keep our file up to date with the local Bayada home care service. That means having their nurse come to our home once a year to do an assessment of our home and my abilities. Bayada is who we call for a home care aide to help me at home if my caregiver husband has to be away for an extended period of time.

People with ALS have a wide range of organizations and assistance available to them. These could be nonprofits, community organizations, or online resources.

What organizations do you turn to for assistance?

This recent news article suggests that the risk of ALS is lower among people in the Marines or Army than among those who served in the Coast Guard, Navy, or Air Force. Data also suggested that military officers have a higher risk of developing ALS than…

Read more

I have been on SPG 302 for almost 6 months. I have had no side effects. I can see no specific improvements. I got my medication through synapticure . If the medication works, as it is supposed to, I would predict that it will take several months to see any results.

I need stay indoors with the heat. i have been doing so for years because besides ALS I also have MS and my body cannot handle the heat. I have gotten used to it over the years because i have had MS for 43 years and then a year and a half ago I was diagnosed with ALS. Lucky me

Good to hear. I too, just just got approved and SPG302/TAZBENTETOL should arrive Wed Aug 5, 2026. Hopes UP!

Just like being in too cold temperatures, my body has become sensitive to extremes. They are predicting 109 F degrees today in our part of Arizona. ……. Definitely a stay indoors with A/C day!
How is everyone else doing?

WOW! jholgan that is a great description of your experiences with this unique device. Hopefully, they will continue to enhance its capabilities….. tango, anyone? 😉

My husband just approved through his “virtual neurologist” @ Synapticure, which a wonderful company, with all kinds of support services available to ALS

We pay for the drug & just shy of 1st week. No negative side effects noted, hoping for + effects.

I am now thirteen weeks into my trial of SPG302. I take the medicine daily and have not skipped any doses. I cannot point to any miraculous reversals of my symptoms but perhaps I have (mostly) stabilized in my decline. Motor functions such as walking, grip and pinch strength, eating, writing, and swallowing, all seem about the same as before…

Read more

How many patients are using this medicine! The effect is quite good. There is a chance to try.

Interestingly enough, I did work with an exoskeleton at the Tampa VA and was given one to take home for use around the house and out in the community after completing the training.

The device is a waist to foot device that was awesome to use around my home and out in the community. The software allows for use with a smartphone, can be adjusted…

Read more

This recent article describes a self-balancing, hands-free robotic exoskeleton designed for people with severe gait impairment that was safe and well tolerated in a small pilot study of amyotrophic lateral sclerosis (ALS) patients who could…

Read more

Yes, I had to reread it several times over as well. The author has posted several other articles focused on ALS that I am slowly slogging through. But I do have a better understanding of the brain and how neurons interact!

Hi all, I wondered if anyone in this group taking SPG302 has any updates as of July 2026. It seems like my husband may have an opportunity to access it through the EAP, so would be grateful if anyone was willing to share any current progress reports.

I have head drop syndrome with my ALS, and am interested in finding the best brace to lift my head.

I’m only half-way through reading this article. That doesn’t mean I understand all of it, but enough to grasp what a maze of theories that keep leading researchers on in their quest to find the root cause of ALS. It reminds me of work at the PowerHouse when we thought we had a root cause for a failure, but closer examination and…

Read more

john-walker, I think you’ll find this article very interesting. Let me know your thoughts.

https://www.nutritionandthebrain.com/post/the-protein-that-cried-wolf

There have been many causes of ALS that are speculated. Of course there’s genetic which has had a major treatment recently in Tolferson. But that’s only about 5% of ALS cases. It’s possible the “cure” may be only a small bite at a time, given the diversity of potential causes. PALS will be tested as they respond positively to a treatment…

Read more

I agree John-walker, it does feel like we need a PhD in microbiology to understand some of the articles about ALS research!

Your 4 causes of ALS seem plausible…. but, what if someone like me has never had those experiences, or past history?

It seems there may be several different causes of ALS and different kinds of ALS. Recently, 4 drivers, identified as neuroinflammation, oxidative stress, impaired autophagy, or mitochondrial dysfunction have been named in a R.O.A.R. DIGAP Clinical Trial. It identifies 4 supplements as potential treatments. This is the first place I’ve seen…

Read more

I, for one, would like to use AI to help discover the cause of ALS — then, effective treatments can begin!

The landscape for ALS has changed so much in the last 16 years since I was diagnosed. We’ve increased awareness, increased availability to access disease information, increased access to clinical trials, and had several treatments approved.  

It feels like the trajectory of this disease is changing right before our eyes. Imagine what else is…

Read more

Hello Hondo, I’m sorry you’re still in a stressful situation. You mentioned that you’ve been seeing a therapist and psychiatrist for years. Are you still seeing them? Are they making any recommendations that could help you?

I live in Maryland and I am in constant contact with NIH and Johns Hopkins University . They are leaders in brain-electrode interface. Phase one was invasive and required opening the skull and the device was placed directly on the brain. Today the BEI is placed on the scalp with good results. Check with your ALS clinic and your support group.