Clinical Trial Recap, Part I

We left Wednesday morning at what felt like the ass-crack of dawn (so it was only 6, but we were up at 4:30am, which I’m sure is considered a form of torture, somewhere) and four hours later, had tackled morning commute traffic and not-so-fabulous directions, hospital security procedures, and a lengthy admissions session.

It became pretty clear, very early on, that the theme of the day would be “long”.

The long list of appointments started out by meeting the genetic counselor, who had put up with my frantic emailing for the past few months while I tried to make heads-or-tails of everything.  The appointment was basically a game of catch-up; we went over the story of how I ended up applying for the trial, shared some photos of my brother and father to show any resemblances between the three of us who had the disease, and talked a little about what I could expect to happen over the course of the two days.

Once the counseling appointment was over, Ben and I had almost an hour to grab lunch and get an extended visitor ID card. After spending half of that time waiting in line for the ID, we gave up and went looking for one of the two cafeterias in the building. Trying to maneuver in the cafeteria was harder than getting through morning traffic. We ended up having to shovel our food in as fast as we could and practically run to the next appointment.

I had physical therapy, where they worked my crippled little body harder in that hour and a half than I usually do in a month. They measured the strength (or lack thereof) in each of my arm, leg, hip, and shoulder muscles in a couple of ways: through pushing/pulling against a special piece of equipment, general flexibility and movement, and by timing how long it took me to do simple tasks, like laying flat on my back and going into a sitting position with my feet on the floor, without assistance.

By the time we were done, I was definitely feeling the burn and sweating like crazy.

Now I know why people find so many excuses for going to the gym.

From there I had two neurological exams, one by a neurogeneticist in her fellowship, and the second by a limb-girdle muscular dystrophy specialist. Needless to say, I was in good hands.  After some basic exam stuff, they rolled in a huge ultrasound machine and looked at the muscle density in my legs, arms, and spine.

Essentially, I took a bath in ultrasound gel.

After scraping off the ultrasound gel, they took some photos of my calf muscles and shoulder height, and eight hours after we showed up at hospital security, we were able to head back to our hotel.

Thursday’s schedule was just as long as the first, because whoever scheduled my appointments didn’t seem to notice the three hour time block between each one. We ended up talking to a receptionist who was able to fix the issue, and within 2 and a half hours, I had a 45minut MRI, an Echo, and a PFT (pulmonary function test), and we were on our way back home, a good six hours ahead of schedule.

So, that was my appointment in a nutshell.

But you’ll have to wait until Wednesday to hear what the doctors’ decision was on my genetic testing debacle.


    • CrippledGirl says

      It was seriously all over my back, my wheelchair, my clothes. It smelled almost like aloe vera gel, so it wasn’t too bad.

  1. says

    Sounds like they really put you through a lot that day! Can’t wait to hear the rest.

    That ultrasound gel always leaves my skin feeling…icky. I couldn’t imagine it all over me!

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