Brief health update.
Updated: Apr 27, 2020
One more post. I met with a nurse yesterday from the company that supplies the Radicava drug for ALS treatment. This is the drug that will be infused through a port in my chest that has yet to be installed. There was an ALS rating scale she took me through. There are four categories (Bulbar (speaking) Fine Motor (Handwriting dressing) Gross Motor (walking, stairs) and Respiratory) A maximin score is 48, I scored a 46.
Later, I received a call from my ALS Doctors office informing me that the nurse was able to talk my insurance company into covering the drug. They were going to deny it, because my lung capacity is below their threshold of 80 (I am at 71) but the nurse pointed out I was early in my diagnoses, I could still speak well enough to be understood and had full mobility. Basically telling the insurance company I would benefit from this treatment and was not severally compromised yet. So now I am waiting to be scheduled for the surgery to install the port, then I will start the treatment with Radicava. Here is a short description of what it does: 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 neurones. The drug is available as a 60mg dose, which can be administered by intravenous infusion. It is initially infused daily for 14 successive days, followed by a two-week, drug-free period. It is then infused daily for ten days within a 14-day period, followed by a two-week drug-free period.