Recent content by TeamDrea179

Yes and yes. Diagnosed as probable at JHU (Dr. Corse). I'm in Dr. Maragakis's exercise study, though not sure I'm adding much value. I'm in the "endurance/cardio" group but I can never get to the target heart rate. I was in good shape before (triathlete/marathoner) and I'm super spastic. The...

Nikki, I currently go to Johns Hopkins but am slowly switching to GW in DC. JHU has trials and I like the folks there, but they don't have as many disciplines in their clinic. I'm trying to maintain connections to both though in case a good trial comes along… nebrhahe53, thanks and good point...

I didn't know that regarding PT. Thank goodness for you! It has not come up at the ALS clinic, but I probably haven't asked the right question. Good point on the Icd9 code! That's SUPER helpful. My PA friend who works for the VA just looked it up and there's only the 335.20 code for ALS. I...

Thanks, Nikki and Vincent! Nikki, right -- "probable ALS" not "probably ALS." 2 regions of my body involved (right arm, leg) according to the EMG. My neuro said I needed 3 regions for the definitive diagnosis. I don't have the genetic defect -- oof, so sorry :( Vincent, our situations do...

Hi everyone, Long time reader, first time poster. I am grateful for all the fantastic information I have learned here along my meandering journey. I got a probable ALS diagnosis in May at the age of 33 and another EMG in August confirming my probable status. I went from full-time to 30 hrs/wk...