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Posted by on Sep 5, 2016 in Blog, GUSU, SCI CURE, SCI Research Fund Bill | 0 comments

Ironies

Hello all,

There are no shortage of ironies afforded by this life, if you’re paying attention. I want to share one of those ironies that I’ve been swimming in this summer.

First off, as you know my son Gabe has a C5 injury from back in 2008. He continues to work out daily in our home gym. And a portion of that work continues to involve using spasms, that weird phenomena of a fully intact though interrupted nervous system below the level of injury. Many SCI folks have them, and for some they can be awfully disruptive and sometimes even dangerous. Many in the SCI community take medications to help reduce those spasms so that they can drive, work or just get through the day without their feet kicking out or torsos twisting uncontrollably. Gabe doesn’t take any meds but rather triggers those spasms as part of his workout to keep his muscles engaged and over time it seems the more he engages them in exercise, the less he has to contend with them when not.

 

The weird thing for me, not having an injury of course is that I still, albeit naively want to see those spasms grow (maybe the naive part)…. grow into function. I still after all these years find myself imagining that one day he’ll cross some imaginary threshold of tens of thousands of repetitions that will throw a switch and reconnect or rewire those fractured and lost connections and turn them into functional and volitional movement. But for now he continues because it’s the way he stays off meds and keeps him in the best shape possible.

What you may not know is that my stepson, Jordan who has mild autism, has also developed Tourettes. Unfortunately for him, his Tourettes or what we refer to in the family as his ‘twitches’ have been profoundly debilitating. They are extremely frequent and when he is highly anxious affect his whole body. So, one strategy we’ve been working on this summer is long walks. He and I have taken many a 5-6 mile walk around the lake in our neighborhood park. The thought is that these walks expend some necessary energy, work to relax his twitching body and maybe most importantly give us a chance to talk about all the things that he’s anxious about. The walking has helped but his ‘twitches’ remain for now.

A few weeks ago Jordan and I came back from a walk and stopped to visit Gabe in the gym before going into the house. It struck me that here I am walking with my one son to help stop his whole body spasms so that he can start High School not freaking out about how he’s going to make his first appearances. And here’s my other son working to increase his spasms so that he could make his slumbering body twitch back to walking…or feeling or more importantly a whole assortment of functions that would give him all kinds of independence. I know Jordan would gladly give Gabe some of his troubles.

Life is funny. Pay attention to it.

September is Spinal Cord Injury Awareness Month. Here are a couple of things you could do to honor this month:

Come to GUSU’s Rock 2 Walk Fundraiser on Sat. 9/10 at the Nomad World Pub. Help us to raise $ for the MN SCI Research Grant program. www.gusu2cure.org

Register for this year’s Working 2 Walk Science and Advocacy Symposium, here in the Twin Cities on 10/28-29 at the Radisson BLU Mall of America www.u2fp.org

Donate to Unite 2 Fight Paralysis to aide in the work of building a network of advocates who are working to expedite curative therapies for SCI. I recently traveled to Pennsylvania, as U2FP’s Advocacy Director to initiate a SCI Research Grant Bill along with several advocates from PA who’ve answered the call. We’ve been preparing for almost a year and as a result received a commitment from a state senator there to draft and drop a Bill in the next session! Washington state is next.

The Work Carries On

M

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