One whole year passed since I had launched my website primarilly focused on analysis of amyotrophic lateral sclerosis disease. I feel I should write couple of lines on how things went, what I expected, what surprised me and how I see the future.
It is not bad to have anniversary right on the very first day of the year. I do not know exactly why, but during 2020 I worked really hard to meet the end year deadline so I could launch the website with the very first seconds of year 2021. I certainly had some expectations and they were partially expressed in my posts but I was also aware of how difficult things around ALS disease are.
I think I really had some strange “what-if” expectations, meaning I could really contribute to making some progress in ALS disease fighting. I realized that just by writing about this disease I am already doing something positive. There are many people who have blog about ALS – but these are almost exclusively the patients. I found several such blogs from various countries and followed the authors. My expectation was I can either learn something new from their stories or it could partially or fully support my theory or hypothesis what ALS disease can be mainly about. On this front I think it was one big success.
Every single story I came acros kind of boosted my confidence that my theory can be relevant to high degree. With this mystery even relevance of 10% could be considered high but I think it could be even more. Of course it is not a full-blown detailed disease description but who would expect something like that? Such descritpion will be available only once the disease will get deciphered and proved using scientific methods. Once there, people may know answers on all the key what, why, how questions but still may be unable to successfuly treat patients due to some known limits.
Basically I don´t need to read any additional ALS stories – once you know what are the common triggers, what may be the latent factors and then bunch of contributing conditions within the organism, you can see every unfortunate ALS case without any surprise – they all more or less follow the same generic pattern. Anyway providing quick solution or bullet proof step-by-step recovery guide or even scientific evidence to sceptical mainstream public is still extremely hard if not impossible.
It is good to point out it never was my ambition to provide low level description of ALS disease and compete with all those researchers, scientists and experts from the related fields. But once I made that deep dive into the problematics and started to systematically track the logically possible paths, mutual links, I somehow got into much lower levels than I could ever think of. I could have made some mistakes along the way but in order to minimize these mistakes I tried to always rely on findings coming from those scientists and researchers. I added references to works which I cite so that the evidence burden is on these people or authors – I am then only linking their findings in for me logical way. Such logic is there and cannot be easily denied. It is fair to admit all is in the state of hypothesis which needs to be proven yet. I am curious how the situation will evolve and I believe one day I will have the opportunity to compare my theory with the real breakthrough findings which need to come soon.
My ultimate expectation was that the information I offer can help someone similar to me – it barely will be a scientist, but it can be someone trying to save his closest one or himself/herself. While still hard and certainly not guaranteed, people in such need should experiment and try things out – why not, there is nothing better. Anyway on this front I need to conclude my project is not successful at all. I think I have honestly tried a lot, but extra patience seems necessary. Expecting some miraculous story to happen within one year is probably too optimistic but I was optimistic exactly like that, I am weird, I know 🙂
Since I took notes in a diary format I know I expected difficulties in sharing little bit non-standard but definitely more promising information. The reality still hit me hard. Of course the situation would be different if the biggest pharmaceutic companies soon announced breakthrough finding and promised a working treatment, drug, therapy is a matter of 1-2 years and 2 years later all promises, results would be delivered. Mankind could celebrate! People do believe in these subjects (pharmaceutic industry, research centres etc.) despite they are constantly disappointing them. How many times breakthrough was announced in past? The thing is that the general human belief is almost exclusivelly directed to this world where following words attract people: billion dollar research & science, evidence based approach, statistical significance, clinicial trials, high success rate in clinical trials etc. I am very sceptical this attitude will lead to real breakthrough in ALS and this pessimism is apparent from my articles.
First all we need is some individual success from which we can learn and try to find out how to reproduce it, what played role etc. Such thinking also has its real logic inside – we humans should attempt to basically start doing things differently to succeed, because if we were on the hot solution leading path we certainly would have already succeeded. Only few people with very rare and unique life experience can realize how we manipulate ourselves. It starts with the early education and then continues with all successive phases of our lives. The form of belief and mental limits are strongly established in mind of typical person living in developed part of world.
When my mother was ill I also did not know how bad the situation around ALS is in terms of lack of trust, disinformation and unethical conducts. Of course I was aware there are some highly speculative treatments which never cured anyone but are still offered to desperate families in if-you-want-to-try-something way. These offers come from researchers – stem cell therapies, drugs but it does not work at all. Still people trust these providers because they think they are trying hard and eventually will figure the problem out. On the other hand alternative, definitely not worse in terms of results and often completelly free treatments (“hint, information, experience”) often results in aggressivity and “how dare you” emotional reactions. Humans just dont realize that they are driven by emotions 10 times more than their rational minds. I see that everywhere and thats where almost all the human problems arise from.
During the whole year I have been following couple of ALS forums, Facebook groups and the situation is more or less same. You will find minimum of rationality there. This is the biggest surprise and disappointment for me – I tried to proceed systematically, I tried to search in scientific works, memoirs and thought it will help me to lead the discussion based on these findings – but nobody is interested to discuss in this way. Those emotional beasts called humans react simply incorrectly. No matter how hard I tried to prevent it, I was accused from unethic behavior and received pseudoscience labels. But when I absorbed these attacks and asked those people what they know about ALS, what they think is wrong, why they think there is no progress in terms of understanding or treatment, they are unable to put together few fact based sentences. Their judgements are purely emotional and (dis)belief based. Humans don´t realize they are breaking their own rules and they are unable to spot inconsistency in their own behavior – they just don´t see any alternative and that´s why their argumentation is full of obvious fouls but yet they are accusing others and assigning labels.
I think I don´t need to change anything on my several months old future outlook article. However there is one factor which could make a bigger difference than I would think year ago. In 2020 I did not expect the CORONAVIRUS/COVID-19 pandemic could evolve into such a chaotic & messy global leadership. While obviously negative with many consequences I think it can also play certain positive role as humans will realize how inappropriately things are managed in health area, how business interests twist everything. I personally am expecting some further turmoils, mainly once the information we suspect gets revealed and confirmed.
Perhaps the trust and belief in the authoritative role of modern medical science highly compromised with business interests will get little bit broken. I don´t want to write about it now but I see great potential there. The pharmaceutic and vaccine industry can get entrapped in its own greedy strategy. Of course I am not a COVID denier or conspiracy theory fan but there are certain aspects which can help people to realize the long established problems which also block the progression regarding mysteries like ALS. Anyway I am very curious how COVID situation will look like in December 2022.
In terms of visitors I would hope for more readers but I do realize I chose area which is not a topic for mainstream, it is not about fun and entertainment etc. It is about still very rare and mysterious disease. While total numbers are very low I appreciate this website was already visited by people from 39 countries all over the world. I will try to further work on it but I am not going to spam anyone or push people to believing in relevance of the information presented here. I share information and people judge, decide and take responsibility for their actions. I believe that actions taken soon enough can show the value of my experience shared here.
I chose Lou Gehrig again as an ambassador of sportsmanship, humanity and also indomitable will. Not only in the way he played all those matches without absence but also how he was viewed by others for his kind character and how he resisted the disease by trying many things, in other words, by experimenting and also believing in miracle to the end. That´s what I like about this legend of sport. I can only speculate how person with his attitude and spirit would view the information about ALS I am presenting here. Anyway it seems to me he had the mentality needed. I have reached out to decent number of ALS afflicted people during 2020 and none of them expressed any interest in the theory or steps which should help – it is sad, but these people are lost. Everyone knows that no matter how bad it is you need to keep trying, be curious, ask questions, experiment.
By the time Lou Gehrig entered his office in 1940, Dr. Wechsler would come to change his mind. He would come to believe that he had discovered a treatment—and possibly a cure—for ALS. He would begin to think he had found a way to save the world’s most famous victim of this mysterious disease and give hope to thousands of others who had received the same sentence of death. And, for a time, he would make Gehrig a believer, too.Eig, Jonathan. Luckiest Man: The Life and Death of Lou Gehrig (p. 236). Simon & Schuster
As per the memoirs, Gehrig, after his famous speech, received thousands and thousands letters – people tried to support him, they were describing their experience with tough diseases and there were even scientists promising cure. Wow, just realize that, it was in 1939/1940 and people really believed in finding cure for ALS, a real wave of support and optimism. And where are we now? Today funeral atmosphere is just terrible, it is hard for people to believe after so many decades of unsuccess. People basically lost hope and accepted this disease is just incurable. But not me.
Gehrig and his wife were particularly interested in the letters that contained promises of a cure for ALS. They threw out the far-fetched ones and sent the rest to the Mayo Clinic for evaluation. “I hate like hell to bother you with these wild goose chases,” Gehrig wrote in one letter to Paul O’Leary, “but I do want to keep you informed when I feel that reliable people are recommending a reliable practitioner.”Eig, Jonathan. Luckiest Man: The Life and Death of Lou Gehrig (p. 320). Simon & Schuster.
Based on my research I believe Lou really contributed to his disease development with that unnatural emphasize on playing regardless his condition (excessive stressing of organism, ignoring health problems). Of course this was just one ingredient out of many. But the way he viewed the disease and how he believed in cure is very inspiring. Today ALS patients are in more complex situation as they are fed with the unsuccessful history and it is much harder to believe in 2022 like Lou did in 1940, despite the level of technology and science is incomparable with 1940s. I offered a controversial but logical explanation to this phenomenon – the ALS history of unsuccess can be unintentionally rigged. The best thing to do is to ignore it. Suppose you are a fresh ALS patient and you are not aware of its demonic lethal history – you will be in much better position than in case you are fully aware of it and even worse, you accept it and believe in its correctness. I say there is an obvious bug and people need to fight hard using the weapons whose potential is already known. Lou Gehrig 50:50 chance belief is legendary – he never gave up.
At times, only the strained sound of his breathing indicated that he was alive. When he could no longer speak, he continued to mouth the words: “Fifty-fifty.”Eig, Jonathan. Luckiest Man: The Life and Death of Lou Gehrig (p. 356). Simon & Schuster.
There were plenty of hard-core racists in baseball in the 1920s (Earle Combs of the Yankees was said to be one of them), but many white players were impressed by the caliber of play in the Negro Leagues. Gehrig, who played in more interracial games than most, was one of the few white ballplayers of his era to go on record in support of integration. “There is no room in baseball for discrimination,” he said once. “It is our national pastime and a game for all.”
Eig, Jonathan. Luckiest Man: The Life and Death of Lou Gehrig (p. 109). Simon & Schuster.
I have also no need to update my new year message – I need to reuse the previous one as the breakthrough year needs to come, time is running … Hopefully it will be year 2022.
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