Life with Brown-Sequard Syndrome (BSS)

5

I am officially classed as an incomple tetraplegic (what used to be called a quadraplegic). I have some use of all four limbs but all four have been affected by a spinal cord injury to my neck.

Brown-Sequard causes you to lose the feeling and coordination on one side of your body while you lose the strength and function on the other. I was born right-handed but my right hand and right foot don't work properly any more. I try to do things left handed but look and feel very uncoordinated when I do.

Because I can walk most people don't see me as disabled. It's not uncommon for guys to get pushy with me because I accidently bump into them, spill my drink near them, or have to ask for a chair when most people are standing. I also get tired much more easily than most people but feel like I'm being judged when I can't pull my weight. I try not to get down about all this but some days it's harder than others.

All of this means I spend a lot of time alone at home. It's sad but true that I have more contact with the people here on SG than I do with the people in my real life.

oldernow:
that really really sucks!    // i am in a different but similar situation - i have 18 (eighteen) cracked or broken vertebrae - all the cervical ones and then from the lumbar up.. .from dolphin virus i got because i was severely cut on coral in "dolphin infested" water... anyway... i got tired of people ignoring my struggle to walk normally and push by me (knocking me down in the process), so I got me a nice stout 5 1/2 foot staff.  with a steel collar around its lower end.  people see the staff and for one reason or another tend to step a little away, plus it makes a nice footrest in a waiting room (of which i have seen far too many).  acupuncture with electricity has helped me maintain minor motor muscle control in my hands.  painful as fuck and takes about 6-8 treatments to show an effect, but every time i stop it, in about three weeks i start dropping pens, fumbling coffee mugs etc.  it has no ability to cure that i am aware of, but it can counteract neural symptoms.   // finally, i eventually realized that there are handicapped people everywhere, and that travel, if carefully planned, was possible.  not in the past year, but i have managed a few trips in the 20 (yay!) years i have been basically housebound--even overseas.  those who are helpful will help, the others, well they have self-identified as assholes and that saves a ton of time!

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