This is a portal under which I will collect the data and results on different attempts to find ways to slow down or stop the progression of my ALS disease.
Currently there is no cure or effective treatment for the disease, nor hope of any coming from the ALS research institutes or companies to help most of the people with ALS today. It is therefore up to the patients to try and help themselves.
I am currently paralyzed from my arms and legs, almost unable to speak and probably have only a few more months to live unless I manage to come up with something that could buy me a little more time to allow the search for effective treatments to continue. I'm currently trying to find out if modern data mining methodologies might have something to give to our currently limited understanding of the Big Picture of ALS. See the outline of the planned data mining project.
Even though I am severely disabled, the modern wonder of eye-gaze technology has enabled me to keep my full-time day job and use the evenings productively studying the different possibilities of helping myself. For this I want to thank the good people at Tobii (the PCEye Go is a brilliant device!) and the Finnish taxpayers who have made it possible for me to get access to this modern technology.
All content on the site is visible to everybody, so there is no need to register in order to browse the site. Registration is needed only if you want to
- Contribute by writing an article - either on some specific item you have looked into or something else that might be of interest to anybody trying to nail this beast down.
- Use the disk space I have plenty of to store ALS related files you want to link to on some forum (such as the ALSTDI one) that does not enable users to upload files directly.
There used to be a Finnish-language discussion forum on the site as well, but it has been replaced with the Alstuttu forum at http://alstuttu.org/foorumi/ . Check it out and join if it looks right for you!
Whichever the case, drop me a line through the contact button at the top of this page first so I know to accept your registration. I warmly welcome anyone to contribute to this mission that currently sorely lacks the big picture people and the systematic approach to do what the single drug based approach keeps failing at. I would especially welcome anyone with experience in mindmapping tools to help me get started with one.