ALS Clinic – Subtlety lost in the rain

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…

It was a dark and stormy morning, and for once I was ready on time!  Not in time for breakfast but in time to be dressed!  Mom came over to watch the kids for us, and Mel and I headed out in the rain to Baltimore around 6am.

I have to remember to type more into my “Proloquo 4 text” app because Mel finds it hard to understand me in the car.  However, I like to think we had good conversations on the way in and back, even though we were both tired.  Either way, we arrived around 840… and so it began.

We had a new Tech taking my vitals – when it came time for my blood pressure, I was dead, because the auto-cuff can’t read me because of all the fasciculations.  (It thinks I’m dead because no pulse.). So, auto didn’t work on one arm, and after an explanation as to why…. let’s repeat on the other arm, maybe it’ll work!

I’m at ALS clinic in Johns Hopkins – I can’t be the only patient with these fasciculations, can I?  The rain has made everything bonkers!

After manually doing blood pressure, pulse, and whatnot, what felt like 20 minutes later… I really had to pee!  And then we went back with Kristen, who is a wonderfully responsive clinical coordinator, always available for questions and help!.

We saw the PT first – she checked me out for my falls, strength, etc.  Basically, my left side is now really weak, arms, hands, etc.  Same questions: How do I do going upstairs?  Are we thinking of modifying the home so I don’t have to go up and down stairs?  We should think about it.  Do I wake up stiff every day?  Try some muscle relaxants.  Ok, see you next time!

Then, my FAVORITE test EVAR!  Respiratory test!

I CAN’T BE THE ONLY PATIENT THAT CAN’T GET THIS THING TO WORK!

Thanks to Amy and her Mom, the equipment people from MDA didn’t have to get us anything!

Then the OT came in and I have a soft spot for OTs because they know what they are doing.  it’s like, “oh, you have wrist pain?  here’s the brace you need.”  “Oh, you have neck pain, let me show you how to X Y and Z.”  So Erin was extremely helpful for all that stuff. And I told her about the Permobil (“Ol’ Blue” I’m calling it), and then I showed the EV that Jack is building, making sure it’s safe-ish…  And let me say that if it was a guy OT, he’d probably say it’s really cool!

When she stepped out, Mel asked me, “Why do you care what they think?  Are they going to report you to the ALS police?”  And she’s right.  I’m not like other ALS patients.

So I told Mel, “You’re right!  Now I’m gonna tell everyone about it!”

The visit with Lora was more sobering.  69% on my lung test and lost 11lbs since Feb… I gotta eat more, and more often apparently.  I showed her the EV too and it was… I dunno, I just felt like the rain washed away the fun of all jokes!

I’m even wearing my “No Warranty” shirt, and NO ONE commented!  C’mon, man!!