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 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!  


Lucas said...

Incredibly touching and intrepid of you to share your struggles, Quinn! Though it may not feel as much the truth; you do indeed inspire all of us on a daily basis. I'd love to learn more about your journey through this period of life, and have reached out on social media in the past, but perhaps, the message has been lost. Either way, if I can be of service or a voice to help share you story please be in touch, and know that we are all rooting for you regardless. All the time. Best.

K said...

Quinn! I still love seeing and reading about your adventures. Thank you for still writing and inspiring!
On the note of hip pads ... this may not be what your looking for but there are crash pads for figure skaters (and turns out volleyball players). Take a look.

NaturalHealingGeek said...

Hi Quinn! :)

Oops, sorry, didn't mean to delete it all. Here it is again. LOL

Thanks so much for being so open and vulnerable! We don't know each other, and I don't quite remember which profiles I clicked through to end up on yours. But I'm here, and I've tried to keep up with your journey. Let me just say upfront: I'm more than impressed with your guts and stamina, and your refusal to back down on this new and often difficult situation! As you say yourself, research and information exchange are crucial.

Here's a quick idea about your bone issues and infections etc. - which I don't get the impression you have given much thought yet, considering the list of things you shared in this blogpost and the myriad of other issues your dealing with. Please correct me if I'm wrong, tho!

While you don't talk about this, I bet there have been a gazillion medications in your life since the accident. You not being able to move as you used to - as you said yourself - adds to issues with bones etc. So do highly acidic medications and a sluggish digestive system. There are natural ways to counteract that - helping you shift the balance in your bodily fluids, tissue and bones from acidic (ie bone-eating, because the body tries to desperately keep your system alkaline by pulling minerals out of your bones!) to alkaline again.

One of them is cold-pressed carrot juice (preferably from organic carrots). Helpful Resources are Norman Walker's books "Fresh Vegetable and Fruit Juices" and "Become Younger." His juice book speaks specifically to carrot juice and bones.

Another great book is "Alkalize or Die" by Theodore Baroody.

I also highly recommend Medical Medium Anthony William's latest book "Liver Rescue" and his new website for natural pain relief & clearing up infections and other side effects of your current physical state. A slowjuicer would be a great investment for celery juice AND carrot juice - you can get a cheap one on Amazon for 50-120 bucks. The Celery Juice site has a recommendation in that price range, too.

Then there is Dr. Arnold Ehret's "Mucusless Diet" which is also available as a free pdf online somewhere (the presence of mucus always indicated inflammation, meaning an acidic organ/system, and therefore something the body struggles with).

And if you're looking to start educating yourself on detoxification and naturally reestablishing the functionality of impacted cells and organs, nutritionist & detox expert Natalia Rose would be my recommendation. She's awesome - and her work has really helped me go through an insanely acidic heavy metal detox.

Hope this helps!
Take care and best of luck to you!

Anonymous said...

Dear Quinn, I follow you from some time and I’m thinking about you very often. As you said -educate yourself- I’m trying to understand more. This video gave me some clarity: Levels of SCI

I'm no expert what so ever, but I have a friend who practice therapy called Craniosacral Therapy, she says it can be really helpful. She helped me once when I fell on the rocks and hurt my face and neck.

This article may not be something new Neurotechnology: and this one may be in some way interesting:

michelle said...

Hi Quinn!

I hope you have found a suitable solution for your hip pads...but if not, I thought I would offer up an idea. I am not totally sure if you are looking for cushioning pads or pads to give a better/tighter fit on the bike. I have used hip pads for kayaking to get a better fit. If this is what you are looking for, there are a couple options. One is to carve a foam block and glue it in place. The other is to use a kit (like I link below) that straps in place.

On another note, I am inspired by your openness. I can only imagine how much easier it might be to hide yourself away after such a life-changing injury. Instead, here you stand as a testament for all of us in perseverance and rawness. I was once an athlete, but have developed a debilitating neuromuscular condition. Although, I still have most of my mobility, I can relate to having to give up not only activities that I so enjoyed; but more-so my identity that I had attached to those activities. It is a journey that few can relate to. Thank you for sharing your here. <3

Mandy said...

Hi Quinn,
I was watching an interview by Lance Armstrong of Alex Honnold and it got me thinking of you. I was excited to see your blog today when I went digging around.
I was the original coordinator for the statin study at Craig. Congrats on finishing the trial! I was sooooo happy to see the picture of you in the Exo. I remember that being something you were interesting in from day 1. I am currently at University of New England working on knee osteoarthritis and achilles tendinopathy studies, no longer in SCI work directly, but still chatting with Reggie Edgerton occasionally on his new company SpineX. I miss the regular affiliation with the SCI world because of rock stars like you. Your drive is beyond remarkable and your honesty and openness is inspiring!

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