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…

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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…

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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…

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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…

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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…

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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…

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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…

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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.

I’m very excited about the possibility of a device to allow me to speak again! But I’m with you Dagmar, less invasive would be my preference. But, for testing and development purposes, I would love to participate.

Your perspective is inspiring, and I think focusing on quality of life instead of only disease progression can make a meaningful difference. Along with a positive mindset and rehabilitation, access to advanced Diagnostic Testing Equipment can help healthcare providers monitor neurological conditions more accurately and make informed… Read more

It’s a horrible situation for me. Im essentially the target of a narcissist. My 3 adult kids or anyone else that happens by, doesn’t see what I have to endure because of the classic personality change of a narcissist around other people.

I’m now thinking I’ll die of a heart attack before ALS because of the incredible stress and anxiety, but…

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Stephen-cronin, that is wonderful news! Please keep us apprised of when you get it and your thoughts and experiences with the device.

I would have been 8.My father had it back in 1968

I am one of the people that will get it. I am going to have it at the end of the month. I am excited about it. Anything that helps PALS is a win in my book.

Everyone in the ALS Community should praise companies that focuses on this disease.

I applaud innovations in this effort to help improve communication. But, having something implanted (even under the skin) makes the cost prohibitive — and this seems to be at the stage of “one patient at a time.”

I prefer to wait until they have a headset. 😉

This recent news article describes a University of Melbourne company that is developing a less invasive brain-computer interface that could one day allow people with impaired speech, including those with ALS, to communicate by attempting to say words.

Unlike many current brain-computer interface prototypes, which can involve invasive surgery…

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For me, the letters now stand for:

Adapt – Learn – Survive

All very good tips for our other members. Thank you for sharing!

It is so good that you’ve found ways to take care of yourself — yes, days will have ups and downs. Simple things like a manicure (aka., someone else holding YOUR hand) and petting your dog are great suggestions for other caregivers.

Being a caregiver for an ALS love one is challenging, heartbreaking and a wonderful feelings. Somedays I’m overwhelmed. And then all is good. We made it through another unexpected challenging day. I schedule time to slip away and get a manicure and pedicure. It does the a world of good to my mind. And too, there’s the family dog, Prissy, that…

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Yes! Hooray for AC!

It sounds like you follow a great self-care routine!

Good advice!

Being a caregiver can be overwhelming. It’s so good you’ve found a way to keep doing what interests you and gives you balance.

Not in any particular order: Visits with friends and family; therapy; gardening; writing; making snapfish books of memories; making lists of stuff that needs attention; delegating stuff that needs doing; cranking the tunes; crying/sobbing; watching silly shows; brushing the cat; if I have the luxury of time, taking a walk; playing cards with…

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It is good to be a stable person.Have good out side help to be stable.It is nice to have a few changes in your week.

My time to do other things is clearly limited. I have friends from a men’s group that I keep up with. Also I play bass in church every other Sunday giving me time with the friends there every other week. My hobby is RC airplanes. I really enjoy it as it touches a few of my hot buttons, its technical, its mostly outdoors and very social. So I…

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I stay in air conditioning 24/7. Without it, i’d be done because i also have MS whcih I have had for 43 years then I was diagnosed with ALS

I find that even sitting all day in air conditioning, I have to make sure I am hydrated throughout the day.

Fun tip: it’s so hot here in Arizona that when I’m outside, I always carry a small oven mitt (or hot pad) to protect my hands from hot metal & plastic surfaces like: car door handles, the door frame, dashboard, or auto push pads.

Summertime can bring with it lots of activities… too many perhaps. Plus, it seems that everyone around the world is experiencing extreme heat. Whenever I have to go out, the heat just zaps my energy – even for the next few hours when I’m finally inside again. I’ve noticed my ALS has made my body more sensitive to the heat. 

How does the summer…

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Thanks for the info! Please keep us posted on how the clinical trial goes. Hopefully if successful it can be quickly brought over here to the US and go thru the process for FDA approval

Wow, that is awesome!! Please post updates as you learn new information. I am hopeful that the ALS Association and community may be able to meet the loathy goal of making ALS a livable disease by 2030. I would prefer a “cure” verse on going treatments, but scientist and doctors are on the right track.

Congrats on the day, the honor, and… the pitch! Thank you for helping raise awareness of ALS <3

Philip,

That’s awesome! I’m so happy you were able to have that experience.

Amanda

On June 2 at Chicago Cub Wrigley Field Lou Gehrig day my family was recognized on the field before the game. I was honored to be able to throw out the ceremonial first pitch.

Philip

Hello Virgo777, I’m sorry to read that you’ve been losing function in your other hand as well as your back and neck. This is the perfect place to share that news with us. Not every month has good things happening in it — and we have to acknowledge the reality of our individual situations.
May I ask if you are seeing a physical therapist…

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