It took me a quite long time but now it is here – I am pulling out the last ace from my sleeve. While my theoretical part of this website can sound weird to people, now I am going to describe my own 1KD CHALLENGE. It is a reality and I will be only translating my personal diary (paper form) to this blog with some comments here or there. Perhaps it will help someone to find some common pattern or similarity, because if the reader finds it there then it inherently means that he or she found another very precious thing. Real hope.
I wrote more than 50 articles about ALS. This terrible disease is probably part of my life journey, but it is also possible I am just totally weird fool. You never know until something happens and my dream is that something will indeed happen.
In this post series I won´t further speculate on ALS, what it is or what it may be, how it is possible it remains incurable, why certain groups like athletes are statistically more likely to get diagnosed, where the mystery and bad numbers have roots etc. If someone wants to read about my possible answers on all these ultimate questions which would indeed open new ways to view the disease and soon also more effective treatments, then I recommend to thoroughly read my whole website or just start with my ALS FAQ page.
Theory is theory, speculation is speculation, but then there is also practical part of my work. If I didn´t have that I would never start creating this website because I would not even believe myself. However this practical life experience is making difference for me. Obviously people don´t have such experience so they will not believe in any value of the information I am providing. This is also the reason why I tried to search in scientific journals for some “remote support” and cited many such works so that someone absolutely sceptical can go through these articles too (mostly facts) and try to re-consider my thoughts and experience presented here.
It now appears that the risk factors for Alzheimer’s disease, ALS, and other chronic neurodegenerative diseases are present for much of our lives, but they are neutralized by a properly functioning immune system. They remain dormant and undetected as long as the immune system can contain them. When the immune system fails, or when immune cells are prevented from finding their way into the brain or spinal cord, these diseases take advantage of our reduced defenses.
Schwartz M, London A. Neuroimmunity: A New Science That Will Revolutionize How We Keep Our Brains Healthy and Young. Yale University Press; 2015
Below I am describing my health state in which I was when I started introducing big changes to my life, without knowing it will work or not. If I just got quickly better I would never got to ALS investigating. I would just think it was some usual problem, it went away, I got better, and that´s it. Lucky me! Exactly as doctors told me, there is nothing to worry about. In such case you would never read this so you know the story was different. In fact I gradually got much worse than I ever was, a clear sign something of stealth nature was inside of me. I was never so sick in my whole life despite I faced this in certain form twice before (it all plugged in together later). Weeks and months I continued in a very disciplined way and one day I finally was healthy as before.
My vision is simple – I share my story, provide additional information, links, supportive facts and that´s it. You read, you judge, you act.
- Unexplained hypertension diagnosed (my mother had too)
- Long time strange neck-nape-shoulder pains (my mother long time problem)
- Newly developed allergy, every year worse, spring pollen allergy (not aware my mother would have, I have never had allergies before, it took me some time to actually recognize it and accept it, at the end was unquestionable and already not that light)
- Strange discomfort on “neurological nature” – right arm, hand, wriste area (my mother first apparent ALS atrophy was on her right hand, exactly at that hand area, between thumb-index fingers, cannot believe we would share that so precisely; can be also described with “carpal tunnel” suspection/alternative)
- During walking I felt “some force” is leaning me to right – like if I was on sloping surface
- Occasional tripping over – not frequent but from time to time strangely repeated (warning!)
- Occasional muscle twitches/fasciculations, sometimes several hours long or till the next day (worst thing ever in terms of getting frightened!)
- Strange mental unrest (like if someone is hacking my neural system or interfering with it)
- Occasional strange weakness or sort of „vibration“ in the back part of my legs (my mother long time big problem!)
- Discomfort under left ribs area – I could not describe it better, doctors did not bother at all and ignored my complaints, on my own I found out it probably was enlarged spleen which I can feel but sonography which I undertook did not state anything.
- Some breathing related problem which I could not well describe, perhaps “short breath” in English if I got it right.
I think that´s it. The list above is something doctors did not really bother about. Except the hypertension. Why? Because that´s easily measurable, you get two numbers, you get 24hours of measurements and thats what they like, what they accept. The rest they hardly can measure so they don´t trust you and play it in the way you are fine.
So this is how my journey started … As I wrote earlier next posts will already describe only my actions as I recorded them in my diary. Hundreds of days so I need to compress it somehow. That´s why I called this weird thing ALS 1KD CHALLENGE. Thousand days should provide everyone the necessary feedback. In my case it was total recovery (I even did not need all 1000 days) and getting rid of all the non-trivial issues which basically have no medical name, despite there are people suffering with them and many of them are advancing to higher severity states including MS/ALS.
Anyway this is not about marketing any miraculous cure here or anything like that – please always remind yourself that the disease somehow starts, evolves and that´s where I think my story can be helpful, together with my analytical posts published on ALS which I wrote just after I recovered (95%+) from some strange health problem. I would suggest reading this and assessing for everyone who meets below criteria.
- You are in the strange fuzzy period when having already worrying symptoms.
Nobody trusts you, things are not getting better and you may be worried it can be preALS state. In this case you can find here what one real person really did and it worked out well at the end. If you can reproduce this scucces you don´t need to worry if you were in real danger of ALS or not, you are healthy and that´s all what counts.
- You have fresh ALS diagnosis.
Terrible situation but you can try to revert it, doctors and scientists have no idea what ALS is and they even admit it. Today there are groups of people which fight more with the public opinion that ALS is always incurable and always fatal. Please check my whole website – it can help, inspire you or shift you on some different more promising solution path. Please do not listen to those who are mentioning “false hope” – nobody wants your money here, nobody wants to fool you, but I want to bring hope because the doctors have none of it for you. Again you need to read a lot and mainly compare the information with your case.
- You have ALS diagnosis.
There are no limits regarding what is possible and what is not. The secret lies within ouselves, our individual gifts, traits, will, faith, power to resist so all written for point #2 applies here as well. I always write time is factor as with every progressing health condition but my motto is simple No Limit and I also love below quote.
Please make sure you read the disclaimer page and you understand the motivation of this web.