- Jan 10, 2017
- Rio de Janeiro
Well, I went 2 weeks ago to see the ALS specialist and he gave me an official ALS diagnosis. It’s been really hard to accept/understand this. My whole life is falling apart, I live alone and far from my family, so I decided to go back home to have more support and also because everyone is super worried about me now, my parents are trying to put on a brave face and cheer me up, but I can’t imagine what they are going through. The disease seems to be confined to the members now, no bulbar and respiratory alterations yet, but significant weakness of my left arm is already evident. I’m scared all the time, the uncertainty of what’s going to stop working next is maddening. I’m really afraid of falling or something, I spectacularly failed all the balance tests, and that was something I was noticing for a while, losing balance all the time. Just hope that moving and not being alone so much will make me feel more “secure” because since that diagnosis it’s been a downward spiral for me, I’m so angry I mean what are the odds of this at my age? I’d give anything for this not to be real, but well… now gonna have to face this disaster as best as I can.