Welcome to my Muscle Walk Personal Fundraising page! And why I walk.
The Day of my nerve conductivity and muscle test is pretty much a blur. My memories of that day are fuzzed over by the pain and stress of the experience and of course, time. Those long needles hurt SO bad and the most painful one, inserted just below my knee, was apparently the most exciting for the young intern performing the test (at the OHSU teaching hospital). After observing the results he went rushing out of the room and came back with the supervising doctor eager to show HIM the results BY REDOING THE TEST. Of all the tests to redo JUST for “fun” this one was my absolute LAST choice. Understandably I have worked very hard to forget it. I couldn’t even tell you WHY they were especially excited but I would guess it had to do with the lack of muscle response from my calf muscles which IS a rare way to exhibit the Muscular Dystrophy.
You cannot imagine the conflict of being caught between the hopelessness of support your child through pain suffered only for the hope that something can be done. And the intrigue of learning new things about how the miracle of the human body functions.
The first set of tests was fairly benign. It consisted of stimulating the nerves at the top of the extremities and measuring the time and strength of the nerve signal at the end. The stimulus was not so strong the limb would even flinch. But, the monitor was set so that we all could read it. The stimulating current was milli amps. Having my education in electronics this became an interesting exercise. What was the voltage being used. I did the calculations on my phone. Amps divided by resistance equals a few thousand volts. I offered this to the technician, his face went stone control, he changed topics and never did confirm nor deny my calculations. I am sure that he had been cautioned to not scare people with the details the it required voltage in the thousands of volt range to get even a few milli amps of current through the skin. The preferred to always refer to the milli amps.
We learned the Jen’s nerves functioned completely as expected and not the cause of her muscle atrophy.
The second test was extremely invasive. In involved inserting a detector into the belly of the muscle and measuring the muscle response to a nerve signal. By belly of the muscle they meant finding the fattest place in the muscle and forcing a needle of considerable diameter in the center of the muscle. I remember watching the needle go in, and in, and in. Big tears would well up in Jen’s eyes I could only squeeze her hand. Then they would remove the needle and it would come out, and out, and out, and was always followed by a great oozing bubble of dark violet red blood. Then on to the next muscle group.
The young student technician called in his professor. They became excited about the graphs being generated by each muscle group. The professor called in another but he did not arrive until they had completed the last muscle group. Still the professor exclaimed look at this and he stuck Jen a second time in that last muscle group, quadriceps, as I recall, “It is just like the text books!”
I really want to believe that that last stick was to confirm with second opinion, but, the conversation sounded more like show and tell.
At the end of the day we knew Jen’s nerves were fine but the muscles were not responding as they should. The next check would be a muscle biopsy to learn why.
Marion (the Scots Gosling) Johnston
Make a Muscle. Make a Difference.®
Brandon & Soni Levenseller
Mr. Marion Johnston
Mr. Marion Johnston
The Tanaka Family
wade & Tammy