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My first symptom was in my left hand. I was carrying a bowl of soup and I almost dropped it onto the floor. And I was serving guests. From there I started getting muscle cramps up my left arm and my left shoulder started to jump around. This lasted for about 5 months before it crossed shoulders to the other side. My response at first was to…

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Living with ALS is often a journey filled with unexpected turns. Many people recall a moment when they realized something wasn’t quite right. I remember tiny muscle contractions in my thighs and restless legs while sleeping.

What was your first sign or symptom, and how did you respond to it?

I have been thinking about getting myself a grabber. What length do you recommend?

I have learn to adapt. In my rollator I have a dressing stick and a grabber. The grabber

gives me the ability to pick up anything I drop. The dressing stick enables me to pull my pants up when using the toilet.

Sometimes a single piece of advice sticks with us for years. Maybe it came from another person with ALS. Maybe it came from a care partner, a physical therapist, or a friend. 

What’s the best advice you’ve received about ALS?

I’ve learned not to assume that everyone experiences ALS in the same way (symptoms, pain, resilience, etc.)…………… I just wish non-PALS would understand that as well.

you have enough baggage in your own life that you seem to not take in as much from others

Living with ALS changes your perspective. Sometimes it changes how you view work, exercise, friendships, travel, and other life priorities. 

What’s one thing that ALS has made you rethink? And how has it shifted your perspective?

An inspirational life! A strong life!

I said immediately to my neurologist, “that is a death sentence.” I did not know much about the illness but I did know that. After getting over the shock, I fully accepted my fate. I have had MS for 43 years already. I think all of the things I have been through with MS helped me to get through this idea of having ALS. I tried everything to…

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I did the same thing as you. Only my wife knew about it. I did not tell the kids for years. My thought was first I didn’t want them to worry. Our youngest wasn’t even finished with highschool. The other major factor was I thought, well they can’t fix me so I need to motor on with life. I had a family that needed me so I tried to be a…

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At first, I didn’t want to tell anyone — almost as if ALS was my fault. Once I shared the news, everyone was supportive and asked how they could help me.

Even though living with a rare disease such as ALS can be immensely challenging, I  am grateful for a few positive things it’s taught me. For example, I’ve made connections and friendships with pALS who live worldwide. I’ve also learned not to push through pain or stress, but to listen to my body’s signals when it needs to rest.

ALS can make…

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Being diagnosed with ALS can seem overwhelming. It’s completely natural to feel shocked, scared, sad, angry, and a long list of other emotions. Along with allowing yourself to feel all of those emotions, it’s important to take steps to accept your diagnosis and begin living life with ALS. 

For me, it took almost a year to conquer my mental…

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A hearty congratulations to you and Rhonda on your 50th wedding anniversary! Thank you for sharing these photos. You both look wonderful, and your family photo (with all the grands) is…. well, one happy family indeed!

<font dir=”auto” style=”vertical-align: inherit;”><font dir=”auto” style=”vertical-align: inherit;”>太好了！希望有效！如果您不想服用，请联系我。</font></font>

Great! Hope it works! If you don’t want to take it, please contact me. Thank you

On June 5 we celebrated our 50th wedding anniversary. I met my wife-to-be, Rhonda at a Conference in Philadelphia in April 1975. I was from Missouri and she was from upper NY state. We kept in touch via letters while we both attended colleges in our respective states. We married on June 5, 1976 at a small country church in her village.

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I agree! We need a cure.

………..if they can send someone into space, why can’t they cure ALS?

How about a cure? I lost my Grandfather to ALS and my Mom December 19, 1999 and now I just lost my brother who was 65 yrs old June 16 2026. A cure needs to be found. Praying for you all.🙏🙏🙏

I have Bulbar ALS. My speech is terrible but sometimes they could decipher my speech in 2 languages and 1 dialect. I type my words most of the tIme.

 

I have been taking Nuedexta (and riluzoke) for almost 2 years now since diagnosis. Dr. Jinsy Andrews 9rescrubed them to me. It is helping me with my emotions and swallowing and I believe in…

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I’ve been on it since April, my weakness is still limited to just my hands, and is slowly getting worse – but again, very slowly. So, I don’t think i’m feeling any positive effects from it – yet.

I been taking it for apprx 4-5 months now with no noticeable improvement in my uppers arms/hands,still praying though

I use a machine speech therapy gave me called Tobi. I type into it and then I play whet I have typed. It is my way of communicating now. It works. Sometimes i can use my phone to communcate as well. It works too. It is not ideal but it is a whole lot better than nothing.

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…

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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…

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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…

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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…

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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…

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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!