Skip to main content

reality

Someone on Facebook posted an article last week. Basically, a Swiss company has developed a fake spinal cord that could potentially enable paralyzed people to walk. It doesn't replace the spinal cord or repair the damaged parts, so no feelings or sensations, prevention of muscle spasms or elimination of AHD, but it would send messages from the brain to the muscles, enabling a person to walk without the use of the heavy exoskeleton (and I'm hoping without the exoskeleton's astronomical cost). It's not been field-tested on humans yet, only mice. So realistically, even if it passes further studies and makes it into human trial, by the time it is finished and passes FDA standards, provided they approve it, it would still take time for doctors and insurance companies in the US to be willing to try it out. We're talking 5-10 years down the road, at the earliest.

I'm excited. For 35 years, the medical community has been saying "cures are around the corner".  And while this would not be a cure, it would be a tremendous step in improvement...a total game-changer for the SCI community.

But for us, it's too late. The body is meant to be used. When it's not, things begin to go wrong and break down.  We're past that point. I think sometimes people look at Bobby and think because he looks healthy, and he is, for an SCIer, that any potential cure would apply to him and radically change his life. Were this "cure" to come along 25 years ago, there would be that possibility. But not now. Muscles atrophy; bones throw away their density if they don't bear the weight they're designed to carry. Despite the daily range of motion exercises, after 35 years of not walking or moving, his body would not be able to support itself even if the brain could suddenly convey messages. And if the muscles can manage to send a message back, we'd be in even more trouble with the amount of pain he would suddenly encounter.

I know that when this moves to human trials it will hit the mainstream media, and people will get all hyped about it. We'll get e-mails and Facebook messages and comments from friends and family all excited that Bobby will finally get to walk again. And I try to smile. I've heard it all before, though nowhere to the degree that he has. I'm thankful we have friends who care enough to share even the faintest glimmer of hope, but there are days when it seems more like hot air being pressed over an over-heated engine.

But for the young guns in the SCI community, I hope this corner rounds very quickly.

Comments

Popular posts from this blog

get your house in order

My grandmothers were very clean people. My mother thoroughly enjoys cleaning, though she doesn't quite hit the same level my grandmothers were on. I don't enjoy cleaning, but I do like things to be clean. I've almost given up on neatness. One thing that they all instilled in me is the crazy concept that your house must be in order before you go somewhere big - like a vacation or something. After all, you could die in a car crash or have to go to the hospital, and then people would go into your house and find it in a terrible mess. Who wants to be remembered by that? So up until this past year, I would sometimes be up almost all night not only trying to get things packed up, but also trying to totally clean house as well. Or should I say, make the house presentable? The Chinese had a horrible superstition that my mother and grandparents would have enjoyed. Spring Festival (the Chinese New Year based on the lunar calendar) required EVERYTHING to be cleaned top to

things we do for love

Saturday we had a baby shower for Bobby's niece. As I was making the mints, Bobby asked what else was on the menu. After I recited off the litany of items, he responded with "No peanut butter?! This shower is for Hannah! What's she going to eat?" (Hannah has had stomach problems over the years and has been unable to tolerate many foods, but peanut butter has been her staple.) Despite my assurances that she would enjoy the foods we were having, he was adamant that I needed to make peanut butter & jelly sandwiches for the shower. Even though I protested that NOBODY took that to a shower, he persisted, and informed me I could make them dainty with my little cutter. And so I did. To my surprise all but 3 were eaten. Who'd a thunk it?

Wait...it's almost March?!?

 10 more months 'til Christmas. This last month has been an absolute blur. Cleaning at Mrs. Bryan's house, cleaning at our house, lots of thinking and brainstorming and rearranging, appointments upon appointments, sinus infection/allergies, Bobby's surgery, meeting with surgeon and finally agreeing to future outpatient surgery for me, ongoing updates from my parents, garden tilled and snow peas, potatoes and beets planted (and yes I left several rows empty between the potatoes and beets for something else to go later as a buffer), chickens are laying, we may have a broody hen..in FEBRUARY!!!, we have two roosters that need to disappear, lots of family have been in from out of town to assist with the sorting and cleaning at Mrs. Bryan's house, and somewhere in the midst of it all I've found time to pay bills and catch up on a few emails. While I no longer feel like our house is a disaster zone, it is still overwhelming. Years ago a friend posted a quote by Martin Lut