Screening Day - August 24, 2015

Today, I learned that I can no longer do "tippy toes" with my left ankle. I had a grueling day of physical therapy and tests.

I arrived at 9 am. and met the study coordinators, Susan and Missy. I spent most of my time with Susan today.We went through the entire study and I signed consent forms. We also went through my medical history (which took awhile) and medications (which took harldy any time since I have stopped taking medications that help my symptoms).

After that, I went down a couple of floors to the physical therapy room. When Aulton does physical therapy at the hospital, it usually doesn't take too much time because there are several things he is unable to do. My situation is different. I worked with Evan today and did 2 hours of physical therapy including a 6 minute walk, a very short run, and lots of tests to measure the strength of different muscle groups. For one half of those tests, I used his resistance and the other half I used a table that has a lot of apparatus and is connected to a computer. The table looks a bit like it belongs in some type of adult film.

I also did several tests to examine the myotonia in my hands. For those of you who don't understand what this is, it is one of the most recognizable signs of myotonic dystrophy in an adult. It occurs when the affected person grips something and is unable to release the hand. For instance, sometimes when I shake someone's hand, I can't release my grip and it is terribly embarrassing. I did a few grip tests with a machine, but after resting my hands and letting them "cool down," the physical therapist videotaped me making a fist for 3 seconds and, then, releasing the fist. I usually pry my hand open with the other hand. I was surprised by long it took my hand to completely relax. It could be an interesting party trick.

During one of the muscle tests, I was asked to test the strength of the muscles in my ankles and was upset to find I've lost the ability to raise my heel off the floor with my left ankle. Ankles are typically a very weak muscle in those with myotonic dystrophy.

After PT, I had a very quick lunch (with a divine "Midnight Mousse Chocolate Cake") and then was taken for vitals. I was unhappy with my weight, a little surprised by my height and had excellent blood pressure, as usual. I really need to take up some exercise regime- oh, wait, that is prohibited by the study.

After vitals, I had an EKG. Dr. Nick Johnson, who is the study physician, said this is the area where most people get ruled out of the study. You can only participate in this study if your heart has no conduction problems. My heart is in good shape and passed this part of the screen.

Following the quick EKG, where the most painful part is taking off the stickers, I subjected myself to more pain by allowing an extremely old nurse to gouge my vein and take eight tubes of blood. This blood was taken hours ago, the site is still tender and a nice bruise is taking shape. I'm not a hard stick, so I was surprised by the pain. She had a difficult time getting the tubes full, so much so that she pumped up the blood pressure cuff so much my hand turned purple and went numb.

After drinking some juice, I went and had an echocardiogram with a very nice guy, who visited with me about my family and reminded me just how much I miss them. Susan asked me, earlier in the day, to show her pictures of the kids, which also made me think of how much I want to squeeze all their cute bodies (even Mike's).

After the echo, I was pretty tired. Dr. Johnson came in and was so excited to see that I had passed the screening and is so happy I'm participating in the study. He said "this is a hard study to get into." There are so many who don't fit the criteria or are unable to travel and I am reminded of the blessing it is to be able to contribute the way I am.

Dr. Johnson did a physical exam and did a test called an EMG. This test measures the electricity in your muscles. Typical muscles make no sound. Dr. Johnson has to pull the needle in and out of the muscle 40 times. It doesn't hurt, it does sound like there are dive bombers in my leg, though. It was fascinating.

The last step of the day, was hooking up my 24 hour heart monitor (holter monitor). The pads are already irritating my skin and I'm bummed that I don't get to shower tonight or tomorrow in the amazing shower in my hotel room.

Overall, the day was exhausting, but I feel good about being able to contribute. Cure Myotonic Dystrophy and do ballet while you can.

Symptoms Today:
severe hand cramping from all the typing and hand exercises
some leg cramps
chronic back and shoulder pain
stomach cramps