This past Thursday, I had to go back to Boston for my 4 week follow up after the transfusion. Mel was still incapacitated so once again, my brother-in-law went with me. Except, it was his birthday!!! Continue reading “Wow, what a surprise!”
I had my two week follow up to the lumbar injection up at Umass this past Thursday. This was a strange feeling,
as Mel had major surgery on Friday before and couldn’t really do much. So Joey volunteered to be my escort on this trip, with plans of beer, jokes and Volturno’s pizza. Continue reading “Who Farts on an Airplane, redux”
“Those of us with ALS are not ready to lose so much so quickly.” – Martin D’Amore, MD
Fair warning, this is hard for me to write so if you aren’t ready for it, postpone reading.
With much fanfare, travelling, and a rant or 6, the first step of the Nurown trial is complete. Lumbar puncture, infusion of stem cell, and 24hr monitoring period. Then the return home! Continue reading “1st Infusion Complete (pt 1 of 3)”
We went up to Hopkins for my clinical eval today. I like going up there, seeing all the people who have dedicated their professions to trying to help people like me, but sometimes it can be burdensome. Interesting, but burdensome. I have a feeling I’m not like other ALS patients… Continue reading “ALS Clinic – Subtlety lost in the rain”