The Weather Outside is Frightful


A friend of mine asked me this week if I was getting tired of hiking the same old trails in my area.  I don't really get tired of hiking Ice Age Trail segments.  As the weather and seasons change, so does the trail.  There are always new things to see and experience on the same paths through the woods or prairie. 

Having said that, there are things that get in the way of my enjoyment of local trails.  Today, it was the weather. We've had a stretch of very cold weather, resulting in frozen ground.  When it started raining today at 33 degrees, the rain immediately froze when it hit the colder ground. By the end of today's walk, Everything was wet, slippery, and frozen at the same time.  Not much fun.

Yesterday was Muscle Clinic Day.  Except for a couple of years when Julia volunteered to take my place, I've accompanied my son Justin through this annual gauntlet of health care providers and tests since he's been about four. 

In the morning, he had a pulmonary function test, spine x-ray, echo cardiogram, and vein-poking (blood tests).  In the afternoon, we saw multiple specialists in the areas of pulmonary, physiatry, cardiology, orthopedics, neurology, neuropsychology, occupational therapy, physical therapy, nutrition, education, respiratory therapy, social work and power wheelchairs.  Whew, it was a long day for everyone. 

In general, Justin stays in a room, and the doctors individually come to him. In theory, it's a great idea.  In practice, it sometimes doesn't work that way.  We sat alone for an hour at one point because one doctor didn't tell the next doctor that the room was available.  They all assumed that Justin was busy. At another point, there were at least six different specialists in the room while a tech took an EKG and installed a Holter (heart) monitor).  It was a little bit crazy, and we were relieved to be done. 

You might wonder why Justin needs all of these services.  There are times I wonder why also.  There is no cure for Duchenne's muscular dystrophy.  The only effective treatment is a high daily dose of prednisone or deflazacort which delays the progression of the disease, which is a breakdown of all muscle tissue.  Dystrophin is the glue that holds muscle fibers together, and his body doesn't produce dystrophin, due to a genetic deletion or error.  This adversely affects just about every major system in your body, which is why he sees all of those specialists.

There have been drugs and gene therapies which offered promise of a cure or partial cure, but none of these have panned out.  So Justin takes it day by day and mostly does his part to optimize a difficult but still rewarding life. He maintained his grade point last semester and will be back at college again in another couple of weeks.

If Justin does well with math and science requirements this spring, he plans to apply for a disabled-friendly summer school course that takes place in Yellowstone National Park.  There are a lot of hurdles to clear, but there is a path forward, as they say.  The first step is to successfully complete his coursework.  


Comments

  1. Away at college, paintball with classmates, Yellowstone in the summer. You're getting around more than me Justin!

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  2. Justin and I went on a road trip after his 16th birthday to the West Coast and back. That trip included Yellowstone and made a big impression. If he doesn't qualify or get accepted for this summer's trip, he can apply again. It's a course that UW-Whitewater offers every summer, he tells me.

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