Monday, January 7, 2019

Take yourself into the wormhole........PLEASE!

You can see how skinny the legs are....quadzilla's gone. 

I was driving up today (now a week ago) from my weekly "Denver Day" extravaganza.  I still do Physical Therapy at Craig.  If I have time in my day, lately I have been adding onto my schedule a "walking" session in an Exoskeleton

Today, I "walked". 

After wards I had a CT scan, blood work and some other finishing work for a clinical trial I started participating in while I was still an inpatient at Craig.  The study gives either a placebo or a drug they think might help slow down the impending Osteoporosis that us Spinal Cord Injury folk are plagued with. 
We sit. 
Our muscles don't squeeze the bone.  Two things that go against our bones natural tendency to rejuvenate.  Today.  I learned that one year out, I have lost 25% bone density in my knees and upwards of 30% in my pelvis.  The 30% could be more.  My right side shows, during a DEXA scan, that it is considerably.....fucked up.  Either the machine wasn't reading appropriately because of a Heterotopic Ossification that I acquired March 1 of this year (blood clot).  The suggested inaccurate reading could be because my proximal femur has this lovely baseball sized mass.  An extra and inappropriate growth of bone in my soft tissue.  It butts up right to my pelvis.  In the DEXA it looks like it is touching would explain the crunching crepitus sound in my hip joint when I bend over at the waist (while sitting in my chair or on the ground).  It also could explain why in the last 2 months my right hip has been popping, like when you crack your finger knuckles. 
A loud and unpleasant, unnerving sound. 

So that was my day.  Emotionally a little draining.  The healthy athletic person doesn't want bones that are just shriveling up so fast.  I liked taking care of my body.  Too bad my mind wasn't on the same page a year ago. 

There are things on my list of "To-Do" that have been there for awhile.  People reach out....I get busy with shit and don't respond.   I also have a hard time FINDING your message, as most are on Facebook or Instagram and the search tool won't let me find you with "key words" of our conversation.  PHOOEY.  

I am also terrible at asking for help, when I clearly could use some.  SO.....HERE WE GO!!!!  I could use some help with random tasks.....

1.) I have been trying to call for a second opinion on my Spine.  I have a bone chip in my dura (at least from my vague memory and doctors conversations within the first couple of weeks.)  Why wasn't removed on initial surgery?  Is that causing nerve pain? Suggestions of second opinions I can reach out to?

2.) Help with the house building process.  Advice mostly, if you have experience on loan process for land/building, rolling it over.... hiring a contractor, recycled materials, design? 

3.) Hip pads for biking.  I don't need butt pads but pads on my hips!!  Company who makes?

5.) Out of order but remembering.... CAD people, Welding peeps, scheming peeps!!! 
Scheming 2 rigs;

a.) To climb the First Flatiron. A light weight contraction that firmly holds the legs in a vertical—meaning not much bend in my hips, almost like a slight squat position with knees slightly bent. Knee pads (or something light that protects the knees, shins and feet). Feet are in a more flexed position.  Check out @madmanpoole and his ice climbing rig.  

Perhaps a single pole or tubing better. Maybe a seat —maybe legs with firm soft cuffs that go around mid thighs and mid calf to hold leg in place?  Wheels. Like rollerblade wheels. Probably one on outside of each knee and one between feet. Or vice versus. Either way 2 somewhere for stability. Would be best to have them one way rotating (autostop mechanism) so when rolling/draggin up the cliff it turns. When paused or stop it locks and does not roll the opposite way (sending me back down wards). 

b.) Backcountry skiing. Mono ski, probably a ski with fish scales to help backward slippage when pushing uphill. Tyler has poles with skins or something on bottom. That would work or crampon claws or something that can then be quick released off and the replaced with the traditional outriggers for down hill. Basically a mono ski set up to sit in but lighter?  Legs out in front slightly bent (knees above hips better for balance, a little dump in the seat but ergonomic for skinning up. Check out @tbone_walker


4.) HELP, educating yourself.  As it helps all of US!  Yes, we are sitting but we aren't just sitting; UTI, Pressure sores, often not a contributing workerbee, a bazillion other complications racking into the healthcare system.  Imagine not being able to breath on your own, move your hands.... 
Being an advocate.  There are 250K of us in the U.S.  More each year, car accidents, disease, athletes etc...  How can we do this advocacy thing together?  Help creating longer lasting relationships with companies, researchers, funding opportunities......so it isn't just a one time thing, so research can keep growing, learning and pushing.... just like us :)

Getting science to collaborate ?  I am sure many are, as I am a newbie and just beginning this strong headedness on Spinal Cord Injury but there is SOOOOO much happening. 

Stem cells (need ALOT more work)  
NoGo Trap, and here too  
Epidural Stimulation (all the rage in NY times and CNN and, and, and, and but Medtronic has been making the technology for ages...needs an update.  Like Zach Morris phone compared to Iphone10!  Also some of these people had movement, "incomplete"injury, I am "complete".  What does that shit mean?  
Transcutaneous sTimulation.... non invasive...not as much hype as Epidural.
Gene Therapy (I am just delving into reading this stuff)

MOST HELPFUL FREE RESOURCE (It is simple well written and interesting.)

Cool shit thats happening; 
Yippee to our archaic modes of transportation 


Thank you.  If you have reached out to me before.  Please try me again!