Home Health & Wellness Exercise & Recovery
COVID-19 Concerns
Post your questions or concerns about COVID-19 on Reeve Connect for our Information Specialists and experts to address here.

Anatomy of Movement Inc.

I've joined this discussion because I have Post Traumatic Syringomyelia and my cord is split from T1-T9.  I have been confined to a wheelchair, but no more.  I am now walking, with good days, bad days, and sometimes a bad fall.

I started Anatomy of Movement Inc in 2017 in Santa Rosa, CA to begin a daily disability access gym.  Then on October 8, 2017, the Tubbs fire took my home and my new business.  

My dream is still going, we've moved 4 times, had more fire here, but I feel committed to doing this.  When I am in a wheelchair I get 6 weeks of PT and they didn't know what to do with me.  I rehabilitated myself by a mix of methods, respecting my limitations.  I feel that EVERY disabled person is entitled to a safe place to exercise with equipment and trainers that know what to do.  You feel so much better, the difference is amazing, but so many people have no mobility and nowhere to go.

I guess right now I am feeling a bit defeated.  We are subject to rolling blackouts, my studio space is cheap but in disrepair.  There is equipment I desperately need.  I want to build my facility in a day, as quickly as possible, but its taking too long.

I just need some reminders of who is out there, how many need this and any ideas or thoughts you want to share.  I know that I don't have much longer, my spinal cord is dying as life marches across it.  Reading everyones stories is such a great inspiration for me to continue when I need strength!  Thank you♥️

Comments

  • prc_Bethprc_Beth Moderator, Information Specialist Posts: 50 Information Specialist
    10 Comments Name Dropper 5 Awesomes First Anniversary
    Thank you so much for sharing your story. I am so sorry that the Tubbs fire cost you so much.
  • 2B2B Member Posts: 1
    First Comment
    I received a request for inspiring entrepreneurs for a documentary and thought of you. Please consider participating if you so desire. The link for the application is: www.bmpcasting.com/B4B
    Click the white button to apply.
    The documentary wants to highlight how some courageous entrepreneurs face challenges besides their personal physical ones, in spite of the difficulty of running a business in a volatile economy, regardless of the ups and downs.
    Thanks for your sharing of your story
  • slomobileslomobile Member Posts: 1
    First Comment
    edited October 20
    I am now walking, with good days, bad days, and sometimes a bad fall.
    There is equipment I desperately need. 
    I know that I don't have much longer, my spinal cord is dying as life marches across it.
    Me too.  What specific equipment do you need?  I probably can't supply it, but please share what helps and how to use it.  It might inspire someone with more resources.  I might be able to help you find cheap ways to make what you need yourself.

    I'm trying to get one of these https://ablechair.com/.  My understanding is that the beta units are currently undergoing revision based on user feedback prior to testing for FDA approval.

    I'm trying to make some of my own equipment to remain ambulatory with machine assistance rather than human.  I could use a robotics machine learning mentor familiar with Nvidia Jetson Nano.  It is promising, but difficult to complete and document alone.  I would be happy to share ideas and photos with anyone interested.

    For exercise, I like to use a nest swing (playground equipment) which I put up for my son.  It was $25 at Aldi (Bee Happy swing) but I see them going for over $100 now.   Put the padded hoop against your pelvic crest as primary stable point of contact.  Lay prone on the swing with feet on the ground Superman style, chin on the opposite side of padded ring.  It provides a nice hamstring stretch.  Arms to the side, elbows on padded ring, hands on rope.   Mesh center provides some support but not so much that it compresses belly, add pillows under chest and shoulders if you need more support to align neck or side bolsters for confidence.  Does not compromise breathing.    Push and pull against the 4 ropes for progressive resistance based on your body weight.  Pulleys mounted to the ropes and/or stationary objects and more rope can change the mechanical advantage or pull angle.  I wear a TLSO back brace and cervical collar to prevent over extension but basically just wiggle around, bounce, and swing to get some dynamic motion for all the small muscles to counter.  Set to music its a bit like dancing.  My 7 year old sits to read in a Tree Pod hung next to me on the same rope between trees in my front yard.  He enjoys the motion and encourages me to swing harder.  He can pick one of my limbs sticking out from the swing and push steadily against it.  My job is to remain balanced.  Working all the little muscles to keep my weight on the swing directed exactly opposite to his push.  I think it works many of the same muscle and sensory pathways as walking but at decreased load and less risk.  Plus, its outside playing.  But could also be hung from a ceiling or frame if that is what you need.

    I seem to be in some medical no mans land because I have spinal cord insult from a mix of multiple incomplete injuries, some progressive mechanism from childhood I don't understand, failed lumbar laminectomy and cervical fusion.  I don't even know if I fit here because I don't have full paralysis yet.  Just wake up unable to move my legs some mornings till I shift enough to release whatever was pinching.  Or loose strength and sensation in my arms because I was looking down at a screen or book.  No one wants to deal with weird complex history from a weird dude.

    No one seems to want to engage in a conversation about how to limit my spine movement to prevent further injury and inflammation, yet allow controlled movement for exercise.  OT just does hands.  PT invariably makes things permanently worse.  AT only cares about what your insurance will cover and what they sell, not designing something to fit your needs.  Who else is there?  It feels like a slow march toward paralysis, but I feel my inbetween condition can offer some insight to others because I can still feel it and I am starting to develop intuition about what is happening inside.  I just don't know who to tell.

    I can still walk a bit so everyone is quick to point out "medicare wont cover what you need" before they have any idea what I actually need and they are unwilling to continue the conversation.  I applaud anatomyofmovement for continuing the conversation.
Sign In or Register to comment.