Yesterday I went to Stanford Medical Center for my second attempt at a lumbar puncture for my third maintenance dose of Spinraza. My injections have not been easy. See, I’m a difficult subject. My spine I mean, otherwise I’m a cool guy to be around. I have severe scoliosis and not many access points for the needle. Consequently, I’ve had to lay on ( Read more... )

I haven’t been remarking on my continuing Spinraza treatments. Mostly because the trouble I’ve had in staying on the table long enough to let the doctors find an access point hasn’t changed much. I can’t manage to stay on the table longer than a couple hours and if they can get it done in that amount of time, things work just fine. I have had to ( Read more... )

In case someone doesn't already know, I am a person with a disability and have little use of my hands. At a recent Abilities Expo, I bought an Obi (a robotic feeding machine) to allow me to independently eat my meals. It's a very slick machine and works very well. It's portable, so you can take it with you or just use it at home. It has a fairly ( Read more... )

In an effort to break through some of this cloud of anxiety/anger/frustration, I was very determined to go to the Women's March today. Got up early (well, for me on Saturday).
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Unlike every other attempt at a lumbar puncture (LP) for my Spinraza treatment last Friday was about as easy and quick as ever. Arrived at Stanford way early because we didn't get any traffic. Checked in, got called almost immediately. The staff at Stanford has been just great to me. Even during the roughest and longest attempts at a LP, they have ( Read more... )

I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication ( Read more... )

Second try on the third dose, done ( Read more... )

I have been trying to write about my second attempt at the third dose of Spinraza and haven't been satisfied with the results yet. I realize there may be some of you that are worried (or maybe I elevate the concern people might have). So, I should let you know that the third dose was successfully done. I have one more to do and the loading doses ( Read more... )

Looks like tomorrow I go back to Stanford to try again for the lumbar puncture. After last week's attempt there was talk about using the CT to do my lumbar puncture, but that takes a lot of radiation. Using the CT on a regular basis doesn't sound like a good solution. Connie recommended that we try again with a doctor who successfully did my ( Read more... )

I'm back from the hospital!

( What? You want details? )