My name is Riku Mattila. I set up this site to give people an idea of what it is to live with the disease called ALS in the USA and MND in the rest of the world. However, in spite of the focus of this site, I don't like being defined by the disease. In fact, I am not even sure I have it anymore: it hasn't progressed noticeably after 2015, and I don't think about the disease much anymore. It did cripple my body though, and the inability to do anything that involves moving any muscles besides my eyeballs does get a bit tough sometimes. I used to do things all the time, and changing the modus to having things done for me isn't always easy. 

Early on, I decided to do whatever it takes to stay alive. One reason is my daughter who was born two weeks after my diagnosis. The second is that my family still needs my contribution in practical things, such as managing our house. Third, I have managed to come up with quite a few tricks that have contributed to my survival, and I feel I should keep sharing them to help others not die for stupid reasons. Fourth, the information might encourage some smart people to get involved in finding treatments for this so far untreatable mystery. 

And fifth, life just is so enjoyable at times, so why not keep living?


Welcome! I hope you find something useful here. For feedback, use my Twitter handle @rmattila74