I started the home infusion of Radicava, a new ALS medicine that as it was explained to me, removes free radicals from the body. And that somehow has increased life span for ALS patients by quote "Radicava™ contains edaravone, a nootropic and neuroprotective agent used for neurological recovery. It is thought to act as a free radical scavenger and prevent oxidative stress damage to neurons." So they don't know how it works, but it does extend life. So sign me up!
One story out this. The two nurses that came in were very professional, but one was a little bit too cautious. I think he did not have a lot of experience with ALS patients because he kept harping on the fact that I was here by myself and I didn't have anyone to look after me because I might fall or be unable to get out the house if there was a fire. I was stunned and said what signs are you seeing I can't do these things? You know I scored a 46 out 48 points on the ALSFRS-R test. I just rode a motorcycle to Key West? I just returned from hiking in Big Bend National park? What was he seeing that caused him concern? I stood and balanced on one foot, touch my nose with both hands and eyes closed and even did a heel to toe walk. He didn't care, he kept focusing on symptoms that I don't have. He wanted to have a medical capability assessment done by his company. I finally agreed to shut him up. Well the nurse from my doctors office called about it this morning and thankfully it appears they will not approve this test. As she said, that is the test we gave you at clinic on February 12th, have you seen any decline since then? I answered truthfully, the only decline I appear to be having is it is slight harder to draw a breath. Every fifteen minutes or so I need to take a deep breath, consciously. She said, that was what I was doing during the test. So no worries.
Russ