This caregivers beautiful wife was able to get out yesterday and we made our periodic trip to central Illinois for another appointment. It was the first time in three weeks she went outside and though a bit warmer, in the low 20s, it still was very exhausting for her. Our general process is a walk from the house to the car, a 120-mile car trip and a ride in the wheelchair up the ramp into the docs office. Then theres the return trip. The Queen expressed her feeling of fatigue several times and even took a short nap on the ride down. But more on that later; there is other news to report also. In previous posts this writer has referenced this couples interest in spotting hawks and eagles – when the time is right. This weird behavior was another one we both shared when we met – this writer started looking for hawks while driving to community college in eastern Kansas in the early 70s. The Queen had been doing the same on her drives and so you can guess how we pass time when driving. We watch the trees for the familiar silhouette or the white belly feathers (of course, in the last ten years those splotches of white tend to be plastic bags hanging from a branch). We “trust but verify” whenever possible and keep tally together. Yesterday the two of us observed 27 hawks on the way down and 36 on the way back. Furthermore, we spotted five eagles, one looking very much like the iconic image of an eagle, sitting regally on a branch with head turned.. It made for a wonderful trip and kept the Queen from thinking about the negative of every trip back to central Illinois – the condition of the states road system. Yes, the road system. The spine-jarring potholes in the highway and the constant washboard effect of concrete highways now covered with asphalt are the bane of her existence. For the years 2001 – 2012 every bump was transferred through her body and into the electrodes in her neck – placed there for her Complex Regional Pain Syndrome symptoms. Now the bumps simply exhaust her. You might be saying “Come on now. How can a simple car ride on a bumpy highway make a person tired?” Heres this caregivers hypothesis. The body of an MSA patient is shutting down over time and the brain and nervous system, both so important to maintaining the characteristics that make us human, standing on two legs, maintaining stability and thinking critically, are the culprits. The key characteristic being challenged while riding in a car is balance. Go around a curve and our bodies adjust. Brake quickly or accelerate aggressively and our bodies adjust. Drive over potholes or breaks in pavement and our bodies, though stressed, adjust quickly and settle back into the seat. For the Queen, and possibly for MSA patients in general, the worse the roads or the driving conditions the more exhausting it is. The body is already inclined to lean – the Pisa syndrome – and the head already inclined to tilt forward - anterocollis. Add to those symptoms the dreaded “Illinois Jounce and Bounce Effect (IJBE)” and now youre talking exhaustion. It points to one more issue caregivers need to consider when planning excursions. The beautiful wife awakened an hour or so ago and after her first half cup of coffee and a look out the windows exclaimed “What a beautiful morning.” It is, and one can see the wind coming from the south and predictions are for temperatures above 35 degrees for the first time in a while. She wants to get out on the back porch later today but already noted the wind blowing over the snow may make the temperature feel colder than that. But it will be fresh air and it will not be so cold she cant enjoy it for a bit. Just another day in the life of an MSA family. By the way, for your enjoyment it seems appropriate to give you a taste of another “day in the life” (youtube/watch?v=P-Q9D4dcYng&feature=kp). Enjoy.
Posted on: Thu, 13 Feb 2014 15:36:06 +0000
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