About

I am Kipp and in summary: a married man, neuromuscular ataxia medical anomaly, aspiring recumbent trike rider, swimmer, race wheelchair pusher, gamer, foodie, professional computer nerd and hopeful paratriathlete.

By nature, I probably fit many, if not all of the descriptions of an introvert, it’s not that I do not want to share my thoughts, and experiences, I’m simply not one, historically, to speak up unprompted.  For a while now, I’ve been thinking of going the blog route, have even ventured a couple false starts.  The steam gathered enough about a year and a half ago, that I actually set up my web hosting and started configuring a WordPress site, laying the foundation.  My idea, to use this as a venue to share some of my life that may not be fully known.  Offer reviews and opinions of things I’ve found helpful, and hopefully, at some point, begin to raise awareness and maybe, just maybe help other people that might find themselves in some similar, or even distantly related situations as me.

Then, well, I entered into a lawsuit, involving a motor vehicle accident, where, another vehicle rear-ended mine.  While involved in the proceedings, it was recommended to keep a low-profile with the social media, as, anything said or published, could be called up as discoverable.  I wasn’t so much worried about any of this affecting the outcome, but still, in efforts to keep things as uncomplicated as possible, this project was shelved.  Wrapping up the nonsense, as of this month, it’s now time to unleash my web presence.  The people have spoken, and now shall I.  Thank you to my good friends at passtheseo.com (really, talk to them if you have ANY web projects going on), for helping me get oriented with WordPress, and blowing my mind with SEO enlightenment.

Way back when, (well, it’s hard to pinpoint exactly when, we’re going with around age 11), my running, and walking, started becoming more “clumsy” and difficult.  Medical visits and tests started in my teenage years, with no answers.  By 18-19 I was, for the most part, done with running, and sports, the mind and will wanted it, but the body just wouldn’t coordinate.  In my 20’s, medical visits, physical therapy, and specialist consultations continued, so did the progression of my symptoms, nobody could fully figure out, explain, what was happening to me.  By 25, I started using a single cane to help with walking.  Ouch, that hurt my pride, but it’s helpfulness eventually won out.  At 28, without direct explanation (degenerative disc disease, I think my near out of control nerd life also contributed), my neck bits threw a tantrum and I had a cervical dissection with fusion of c5-c7.  Recovery from that surgery was rough, but I eventually got back to swimming my miles in the pool, and soon added in spin class and logging miles on my road bike outside.

Medical visits continued, progression continued, answers did not come, however, with my new addiction to exercise, I was feeling better.  It’s never been so much that exercise has made me feel like things improved, but things feel noticeably worse when I don’t keep up the exercise and activity, as much as possible.  Good motivation, huh?  The exercise achievements were peaking when, while driving to the gym to get in my laps, I was rear-ended in a motor vehicle accident.  I will try to be sparse on the details here (there may be more at a later time), but that accident, in my opinion and all sincerity, led to my need for a lumbar fusion, which happened in June of 2012.  After the surgery, I wasn’t able to get back to using my single cane and moved to relying on forearm crutches (after using the junk standard medical supply aluminum ones, I found sidestix.com – so much better), and a year later, received my first wheel chair (TiLite Aero Z), to get around for the longer distances, still using the stix for short hops.

Summer of 2013, after much research, finding, applying, and being accepted, Greta and I traveled back to the National Institute of Health and the Undiagnosed Disease Program, where I went through just about every medical test imaginable.  An incredible team of medical professionals dedicated to trying to figure out this stuff that others give up on, on account of symptoms and results not fitting into the structured templates of known diagnosis.  Yeah, I’ve stumped them.  There was a strong theory at the end of the week, which, was disproved as well with further tests.  At this time, the team at the NIH is still digging through the intricacies of my entire exome, and comparing it with others involved in the Human Genome Project.  I promise to give a bigger summary of this visit later (Post is done, here!).

We wait.  I can not wait.  Well, let me clarify, I do place a large amount of hope on the sliver of a chance that they can find some explanation of me, but, at the same time, I have to keep trying to do what I can to live as much as this life as possible, adaptations included, I can’t wait for others to do that for me.  After the Motor Vehicle Accident and resulting back surgery, I couldn’t get back on my fancy Italian Wilier Road Bike, without back pain.  I think it may have been the physiatrist back at the NIH that first suggested I look into a trike, of course I was reluctant, come on, my road bike was awesome, trikes were for old people.  After some research into trikes, I discovered the whole recumbent trike world, and that I wouldn’t have to sacrifice the cool factor, or even speed.  Went down to my local recumbent specialty shop (coventrycycleworks.com at the time), tried out a few recumbent trikes, fell in love with the Catrike 700 (catrike.com), bought the Catrike 700, and sold the Wilier upright road bike.

Pedal on.  This will be a large theme of my efforts here.  I still like to swim, and hope to add that back into my regular routine as well, but I just can’t get enough of the trike riding.  Although I am not nearly as fast as another non-kipp might be, this is something that I can do.  It makes me feel good, the miles help me think less even, about the fact that I can make it maybe only a step or two when I get off the trike, I won’t lie, this also gives me a bit of an ego boost, if only they knew my other ride was a wheelchair.  This year (2015), I also caught the paratriathlon bug, started pushing a race wheelchair (which I’ve fallen in love with), and about a month ago, had the opportunity to participate in a Challenged Athletes Foundation Paratriathlon Camp.  Watch out for me in 2016 as I enter my first official competitions!

kippitmoving.com

cureforakipp.com

imnotdeadyet.club