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    • #18960

      Hi Everyone, It may or may not be new knowledge, but have a theory about theo Possible or probable causes of ALS. Why are most of the large ALS clusters in the USA in the north near the Great Lakes and in the North East? Well, I have a theory or there is a theory?

      Looked at maps of ALS distribution, these clusters are near water, I then looked into algea/bacteria growth where these large ALS clusters are, both very similar, the distribution of bacteria/algea blooms and ALS populations. That’s probably not new knowledge (Below article), but that’s not particularly the theory.

      Looked into it further, mapped out all the nuclear/coal power stations distributions (maps) in the USA, Most the power stations are near or around the Great Lakes and in the North East/New England of USA. The distribution of power stations and ALS are almost identical or should I say very similar, is this ironic? What do you think?

      Did the same mapping, Globally and ALS follows the same distribution pattern with power stations. lots of power stations and ALS cases in the middle of Europe, not so much in S. America, or Asia, but that is changing with Asian, development. Many people know power stations nuclear/coal usually change thermal properties of water, change temperatures by heating/cooling water supplies, this can cause Cyanobacteria and Phycocyanin blooms. So, maybe, just maybe ALS is either caused by bacteria/algea blooms, maybe blooms from power station run off or electricmagnetic fields associated with power stations! Anyway, you can look at maps on your own, google it! What do you think? Interesting or just another theory? If this is old knowledge or already very well known, I apologize, but it’s still interesting! If we can find causes of ALS, easier to find a cure! All the Best! Jim

      Found article which discusses some of the above!

      “Mapping amyotrophic lateral sclerosis lake risk factors across northern New England | International Journal of Health Geographics | Full Text”

    • #19083


      Parkinson’s disease drug for ALS, Dopamine Agonist. Looks again promising! or another false claim.. Ropinirole/Requip

      “Parkinson’s disease drug proves effective against ALS in Japan research using iPS cells – The Mainichi”

    • #19088

      May have to ‘Plea The Filth Amendment” right to remain silent rather than incriminate oneself! with that one Theory, but just passing on other people’s research/theories!

    • #19089

      Let me add one of my many dubious theories 🙂
      Scientists tell ALS is a motor neuron disease, but what we can see is muscle weakness and waste.
      So let forget the motor neuron thing and concentrate on what is visible.
      There is another disease, not well understood as well, which is named cachexia.

      There is no clear cause of cachexia, if you look at the section about mechanism in Wikipedia you will recognize many names, including oxidative stress, which happens when SOD1 is not functional, anomalies in ubiquitin–proteasome system (UPS) or Nf-Kb that JP Julien thinks it is one of the main causes in ALS.

      TDP-43 aggregates in cytosol which happen in more than 95% of pALS, has many biological roles, one is about regulating body fat composition and glucose homeostasis in vivo.

      Neurons cells are close cousins to muscle cells…

      • #19436

        “Neurons cells are close cousins to muscle cells…”

        Motor Neurons that die are not as replaceable as muscle cells. Through one’s lifetime an individual can bulk up muscles, and lose them just as quickly, and over time replace them.  Neurons go through the Walerian degeneration where the axon tries to regrow and connect to the neuromuscular junction with the muscle to recover from injury. As long as the myelin sheath is intact, neurons can reconnect with muscle and skin that provide movement and sensory messages to/from the brain.

        It could be that the body’s signals to muscles triggering the natural loss of those muscles are getting mixing up with the signal to the neurons at the neuromuscular junction. Muscle cells reach the end of life much quicker than neurons do, so if the “switch” telling muscle cells to die is taken up by neurons they would terminate en mass (maybe thousands or hundreds of thousands at a time). Replacing muscles through diet and exercise is much faster than reinnervation. Reinnervation happens at about 1 inch/month, and if the nerve does not reach the neuromuscular junction within a limited timeframe, or is directed not to grow by dysfunctional signals, atrophy will become permanent. That ties into why I am most interested in NGF, nerve growth factor, and how it stimulates neuron growth.

        • #19441

          “Neurons cells are close cousins to muscle cells…”

          Motor Neurons that die are not as replaceable as muscle cells.

          That was true until a few years ago.

          But since 2017 at least, scientists are working in replacing motor neurons. Those scientists do not work in the ALS field, they work in the field of regenerative medicine. It’s a pity that ALS organizations do not fund heavily this field of medicine.

          This is even known form prominent ALS researchers. For example in June 2019 Don Cleveland suggested during a conference,
          that instead of inhibiting this or that ALS protein, ASOs could
          give rise to brand new neurons in a sick or aging brain
          . This is extremely important for pALS!

          This kind of research has already succeeded in reversing Parkinson’s disease in mice!

    • #19092

      Thank You Jean Rolzic! Hopefully I got that correct, JP Julien..
      Upregulation of INQLN2/Ubiquilin-2 are linked to pathology, mutants can form cytoplasmic aggregates. This Upregulation contributes to pathogenesis through NF-kappaB activation by p38 MAPK signaling.. Another words Inflammation.

    • #19449

      Burning coal creates toxins one of which is mercury. Its reasonable to assume some of it ends up in water in the area. Heavy metals like lead and mercury are most likely a factor as well as algae blooms. Leaded gas. And probably a variety of other things.

    • #19486

      Hi Jim …There have been concerns (in places other than the US ) about bodies of water ‘clusters’ and so-called ‘blue-green algae’= (not blue, or green, and it’s not algae, but anyway)- in bodies of water/ rivers, such as the large cluster on ONE side of a big lake in France…In Australia, we have the mysterious ‘cluster’ around an area sourced by a slow flowing river (Riverina cluster). So your theory about power stations and coal may only be true in one place- ? – or test for validity-as these others do not involve fossil fuel stations etc at this time.

      Or are you only looking at America? Have your read / heard of BMAA (the neurotoxin in Guam which caused an ALS like fatal illness to huge proportion of its ppn- turns out, BMAA IS (one of the neurotoxins produced by blue green algae / these watersupplies…But, the mechanism/ cause is not clear. It may be- correlation/ must be tested. AND there are other water-based neurotoxins, which at tiny amounts are not counted as harmful- but this needs reconsidering – I think that is about  to happen too.

      BTW, Great news about the dopamine agonist- (you mention in another post) – it’s already available for Restless Leg syndrome- just sayin’

      Best wishes







      • #19501
        Dagmar Munn

        … and then there are those pALS like me, who despite living in the dry, desert area – – nowhere near water, coal, or power lines still get ALS. Maybe it’s not always caused by environmental exposure.

    • #19496
      Kathy stitz

      Unfortunately doctors don’t know what causes ALS, although there are many theories about what might cause it.  That’s one of the things that is so difficult about having ALS.  We don’t even know why we have it!  They need to have more of an understanding about what causes it in order to try to find a cure for it.


      • #21981
        John Addy

        My grandfather and all his siblings died of this disease and also my two brothers so mine is genes

    • #19499

      And researchers need to do more comprehensive studies with long term survivors. Why some do better than others. Part of it I know is attitude towards the disease and it’s effects on you.  Fighters stand a better chance.

    • #19503
      Kathy stitz

      I personally think a high level of exercise has something to do with it.  I have noticed that a lot of pALS have said they exercised a lot prior to being diagnosed with ALS.  Yesterday I read an interesting article about the relationship between exercise and ALS.  I don’t know how to put the article on here but it was called:  Strenuous Exercise Can Increase Your Risk Of ALS, Say Researchers.   It was written by Katie Spalding on June 11, 2021.  The researchers discovered that  regular, strenuous exercise is a risk factor for ALS.  They ruled out lifestyle factors like smoking, educational attainment and body fat percentage.   They don’t know why some people who exercise a lot get ALS but most do not.  The researchers state that exercise is beneficial for most people and most people who exercise a lot will not get ALS.  Now they need to try to find out why some people who exercise a lot get ALS but most don’t.   I guess this risk factor doesn’t apply in all cases of ALS and more studies are needed to find the causes of ALS and hopefully a cure soon!






      • #19505
        Dagmar Munn

        Kathy – – I think you might have read it here in the forums 🙂 we have a discussion going in the Research Forum:

        Basically, it matters whether you have sporadic or genetic ALS. According to this study, we need to differentiate between the two (although the study’s title leads one to believe the risk is to ALL types of ALS). This study delves into the controversy surrounding theories that exercise (or sports) increases the risk of developing ALS in the first place. Remember, we’ve had over 10 years of published research showing the benefits of exercise once you’ve been diagnosed with ALS.

        You can read the full research article here:

        Snippets from the research findings:
        • For persons with genetic C9OIRF72 ALS: intense, strenuous, and competitive exercise may have been a causal risk factor for developing ALS.
        • But strenuous exercise was not a causal risk factor for those with sporadic ALS.
        • Likewise, sedentary behavior was not significantly associated with ALS. (So, a healthy, active lifestyle is still good to pursue)
        – DIY exercise, such as yoga, going for a walk, light workouts, etc. had no increased risk factor for developing ALS for either genetic or sporadic ALS – – it was the intense, strenuous kind, and then only a risk for those genetically predisposed to ALS.

        Other risk factors debunked in the study results
        • Body fat percentage is not significantly associated with ALS.
        • Neither is ALS associated with smoking, level of education, type 2 diabetes, or head trauma.

        The study’s authors propose that there is a functional link, “in which exercise amplifies toxicity resulting from a genetic mutation. Their study does not point to low-intensity, infrequent exercise having any risk of developing ALS, but does support toxicity resulting from high-intensity, frequent, leisure-time exercise.”

    • #19507
      Kathy stitz

      Dagmar, thank you for the information.   I do recall reading that now.  What I was referencing was another article I had read about it that has similar information.


    • #19509

      Obviously it is not any one thing that causes it to develop over time.  The onset of major symptoms is like the tip of an iceberg where the rest of it has developed over years or decades.  First, I think there is a predisposition caused by a virus that does damage to the CNS. Then the disease progresses from there.  Think Polio, and Shingles where the virus resides in the nerves.  The symptoms of Post-Polio Syndrome are quite similar to ALS but usually with a lesser severity.

    • #20620
      Trevor Bower

      So many ideas are floating around tonight. I was told by a prominent ALS doctor that I didn’t have one of the “S” diseases years ago. He said that was the good news. Years later after going through lots of tests and enrolling me in the Undiagnosed Disease Network I came through without an answer.  I still struggled on. That same doctor this past December told me I have ALS. He said it is a variant of ALS because it doesn’t seem to show up in the tests for  ALS. The more I read the more I’m finding this is not just one disease, it is not just genetic or familial, and it doesn’t seem to fit into a nice little pattern. We talk about associations and possible connection with ALS. It isn’t fitting into a nice geographic association or just genetic, or what we eat or drink, whether we or young or old. The one correlation that has been made is that people that were in the US military are nearly twice as unlucky as the rest of the US population to come down with ALS. Well, that still didn’t get us any closer to the cause or the cure. But it is something to work with, maybe.

    • #21511
      Shane Green

      ALS disproportionately affects military personnel and athletes. Also, incidents of ALS seem to be on the rise. Military, athletes, and the generation currently turning 60, 70 years old, is likely to have been exposed to greater than average amounts of sunlight during their teens, twenties, and early thirties. Meaning they likely had very high natural vitamin D levels during their most active years.

      Military and athletes in particular probably also have fairly radical drop-offs of sun exposure after their service/careers end. Everyone’s ability to produce/absorb vitamin D also drops off as they enter their 50s, 60s, etc. Perhaps ALS is triggered by the drop off of vitamin D. This would explain the higher incidence in military and athletes, as well as higher incidence among the last generations to actively have sought out tanning without much worry about skin cancer, who are now in their 60’s. Perhaps vitamin D works a bit like a high watermark and the higher it was at the prime of life the more likely a drop-off later in life triggers ALS.

      Back in the foraging days, this high-water mark vitamin d level drop-off would have been a solid indicator of elderly family members who stopped contributing to a family’s survival. Perhaps ALS is a familial survival mechanism.

      • #21523
        Romy H

        With my late Twins case of ALS, these are things I know to be true that may be factors:

        Lori hiked a few times a week up to 10 mile hikes, beaches, high altitude etc.
        She would dance and do other exercises but was not over exercising.
        Her home had mold and bird dander, I could see stuff floating in the air, I warned her!
        The landlord treated the home for mold but he stopped the process without her knowing.
        She ate organic foods and drank spring water that was tested to be pure.
        Lori did not eat sugar hardly at all, had a great balanced diet and was very healthy.
        She refused to see a Dr and chose only homeopathic care.
        When she chose Comfort Care, she was 115 lbs which was only 10 pounds less then usual.
        Lori was not near death when she chose Comfort Care but this affected her mind.
        Her Medical power of attorney was her daughter and she backed up her Mom.
        I tried to get my niece to stop it gently but there was no having it!
        When choosing Comfort Care, my twin was still talking, swallowing but no mobility.

        I need to post that part due to the nature of ALS, a Medical Power of Attorney must be chosen with great care. This can affect a persons mind and there fore their ability to make proper decisions.

        There is no family that has had this before. We know our Father died from something that was felt to be neurological but he was exposed to chemicals alot. We never got a straight answer on him but he lost half his weight before he passed away.

        Our Grandparents lived under huge High Voltage Power lines and they didn’t get ALS. I have family still there on that property and no ALS has emerged. I tend to feel that electricity was not a factor in my twins case anyway.

        • #21525
          Shane Green

          I’m very sorry to hear about your twin.  Those are very interesting points/factors you bring up.  The high altitude hiking would certainly have induced high levels of vitamin D like I was suggesting may be a factor later in life (when vitamin D levels drop off), but certainly the other possible factors  you mention could be additional or possibly the primary cause.  Do you mind if I ask roughly the age of onset for your twin, and also, whether are you identical twins?

          Someone in my immediate family *may* be dealing with ALS (we’re still hoping for a lesser diagnosis), but I can certainly see the importance of your advice regarding care and power of attorney.

        • #21530
          Romy H

          Thank you Shane! It was truly the most devastating loss of my life. We are fraternal twins, I do hike on occasion but live now where they are mainly just walks around the island. She was 56 when she chose Comfort Care. From my research, she had a fair amount of time left! We believe we saw signs of her slowing down 3 years prior to her passing. Her onset was at 53 from our agreed on perceptions. This said, she didn’t do alot of high altitude hiking but her favorite hike went on for miles and had a very steep tall climb back up, either paved or on an adjacent trail. Her choice in homeopathic care was encouraged by a local quack. Sorry I realize there are plenty of verified professionals within this field but this lady was not one of them! She took advantage of my twin and her fiance’ for tens of thousands of dollars. Lori was put on over 100 pills a day, something she called Gabba Treatment (some strange thing she drank in the middle of the night), colloidal silver water she finally stopped drinking, she would be put on an elliptical to keep legs limber as she could still pedal it, she was in a hyperbaric chamber for 1.5 hours a day and infra red for acceptable time frames. I disagreed with all the pills and the hyperbaric chamber due to it pushing such pure oxygen into her but not expelling the carbon dioxide which is an issue for ALS patients. The colloidal silver I will never back up claims on and other hokey pills included in that mess she took daily. Her daily food intake was about 1/3 of what it should have been. Her 3 meals equal one of mine! We both weighed 125 when she started to really show signs of progression….I weigh 120 now and she weighed 115 a week prior to passing. I was told she didn’t lose much more but don’t know exactly what she weighed….I would imagine it was around 110. My brother was there at the time she passed. She had gone to a Dr finally just 3 months before she chose to pass away. I say chose as it was not her time. The Dr offered her a medication that he said would provide her with 3 to 6 more months and stop the progression just two months prior…but she had said “what is that?” with a scoff. She refused to accept the diagnosis till the end. Then she just decided it was over for her. Her body did have alot of issues due to the care of the last hospital. She wasn’t getting her physical therapy, she was not doing well and not getting the best treatment. They had moved her to a private care home and she was placed in a room with a screaming lady all night with no door on it! She called her daughter, had her moved to the hospital in Port Angeles, WA and that is where she made her decision…it was such a shock!! I realize people have the right to choose…but that was not what she was like! She was a fighter and a tremendously talented woman with high intellect. This affected her brain 100%. I am 58 now and show no signs. Her daughter got the genetic testing and has no markers…my daughter got tested and shows no markers. I have not been tested but will be soon. I just didn’t see the urgency based on the others testing so quickly and the fact that I know the signs very well now… I have done so much reading after what happened to my beloved twin. I wish all the best to you and your family.

    • #21541

      Michelle Lorenz has been gathering this information from across the United States for the past year. Below is a link to the Facebook group where we have been contributing our local information, and you can see it by state.  I can’t remember if it is a private group or not, but the information is interesting

      Hope this is helpful

      Note from the group moderator: Please use care when reading posts by various social media groups ( such as above) that are not affiliated with reliable medical sources.

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