Panel member for newest MS Drug

2016 october, myself and my partner were invited to be on a panel with thirteen other people who had PPMS, and their partners.  We had just returned from another Alaska trip, which I need to blog about. But those were easy short airplane trips, a hour here, stretch, and your there, relax. Change planes, relax. But I had not recouped from Alaska, or seeing mom and our friend Larry and Karen from Sequim, when given this opportunity.

I had to really question being cooped up in a airplane for three hours, to Chicago from Sacramento, and another hour and half  car service ride to airport, plus going thru TSA checkpoint with twenty medicines, syringes, and documents.

I had failed the checkpoint on the Alaska trip, as TSA agent yelling commands to raise arms higher and keep feet on floor map as machine spun. My spasticity set off the alarms for me to be patted down.  I have since learned that I can not use this machine, and I am taken to the side of machine, and even My cane has to go thru x-ray
 My liquid medicine, even if unopened, gets opened and tested.

I finally conceded to go, when their interest in our participation was, they would put us in a sleeper car on Amtrak train, for my spasticity, for trip home.

 I had never ridden a train before.  That was awsome.! Trains are not made for The handicapped, but they gave us The handicapped suite. Beds that folded down from chairs, to make a bunkbed. A private toilet, but we used one with a door right outside our room. A Shower room was next to that.  The room Took up train from side to side. Our room attendant was wonderful. You did need to climb winding stairs, and cross quite a few sleeper cars upstairs to get to domed observation car, and dining car. All meals were included.

The meeting of the Genetech team from San Francisco, and researchers, scientists, the meeting producers, Bruno mars from Switzerland, the head scientist for the secret product we were panel members on.  It was a great opportunity, and would give input again to see steps needed to obtain FDA approval.

We were shown graphs, of what looked better,  the new drug, being a molecule away from rituxamb, which just lost its patent. Marc tells more than I can in wheelchairKamikaze.com, and I can be relaxed I did not share anything from their 24 page attorneys small print release form that we both had to sign. The Drug I had already figured out was Ocrelizumab.
ocrelizumab commentary by wheelchairkamakaze


I figured out that it was the newest drug for PPMS, as that's what all the 13 panel members had. Everyone was on Ampyra, the magical drug to help keep us walking. Everyone used some type of mobility device. Those that had stopped their primary Drug , immunology modifier, we're limited to wheelchairs. Had to take a mental note. Questions were answered with vague answers from their speaker, who was having input from their team of lawyers, and research team.

They fed us good, was a first class hotel, and a shuttle car, which I forgot about. The Chicago airport greeted me with a wheelchair, but attendant knew no english. I walked my Charlie horse off with cane, as he pushed bags around. We went up and down employee elevators, until finally getting to a airport hotel bus.  A adventure inside the Chicago International Airport.  A call when returning home told us a car service has been awaiting for us.

Matt has in his post this year, with him starting.  My First Ocrevus Infusion

My nephew lives in Chicago, so we got to take the Blue line down and have dinner with him, and see my sister in the morning, before being taken in a Lincoln navigator to Chicago Amtrak Train station.

This is when the World Series was playing and the winning events were going on. Crowds of people. Would not of found train, if it were not for red carpet treatment with shuttle to train track.I

The Amazing Race Amtrak took us straight across from. Chicago to Sacramento.

Thanks for reading
JoeY