Shade’s fundraiser to help get him mobile again started off amazing. In 24 hour, he raised 1/4 of the total necessary funds to get the Myomo Myopro robotic orthotic and the LifeGlider ambulatory device. It shouldn’t be long before Shade is back on his feet and using his arm again.
For those just tuning in, the Myopro is a robotic arm orthotic that will be custom made to Shade’s arm. With the use of sensors like those EKG thingies you have at the doctor, the device will pick up signals when Shade wants to move his arm and translate those to the robot arm. So even if Shade can’t move his arm, the robot arm will do it for him. That means he’ll be able to stretch it out and pick up a glass, grab a door handle and turn it, or defend the galaxy against xenomorphs.
The LifeGlider is like a walker but very different. It straps around Shade’s body so that his center of balance is supported. That way, he isn’t leaning forward and likely to fall. Then he can practice walking without the worry of tipping sideways and bashing his head against the counter. It will also improve his ability to dance the tango.
Both of these devices are going to help Shade achieve independence. Please spread this message around to all your friends and local businesses. Let’s get Shade mobile again!
Wheelchair users are faced with multiple challenges. The most obvious are physical, accessibility being on the forefront of the ADA’s agenda. However, a subtler issue that always bothered me is the social obstacle. Wheelchair users are not at most people’s eye level, which makes a huge difference when conversing. Don’t believe me? Have you ever been standing at a party and started chatting to a person sitting? That conversation doesn’t last long without one of you changing position.
Shade hanging out with family friends
Something as simple as being face to face makes a huge difference in social situations. It’s something I always took for granted until Shade had his stroke. I remember years ago, dropping Shade off early at high school. I parked and sat in my car, watching Shade circle the tight clusters of chatting kids, unsuccessfully trying to insert himself into a conversation. Shade’s wheelchair was too bulky to infiltrate the groups. Even if he did get into the circle, because he was sitting, he was often ignored, not out of malice but because he wasn’t face to face. I sat in the car sobbing, cursing my son’s cruel fate. (Yeah, I’m a big crybaby. You should see me at Pixar movies.) Of course, our close friends who have known Shade for most of his life are aware of Shade and make great efforts to include him in conversations. But think of all the everyday situations where people look right over him. And Shade is a friendly dude, not shy at all. I can’t imagine how tough this might be for a person who isn’t as outgoing as him.
Shade has leg strength.
The thing is, Shade can stand. His true issue isn’t leg strength; it’s balance. He tends to topple, especially if he tries to lift a leg to walk. Thus, for safety issues, he’s been relegated to a wheelchair. Shade can stand if he has handles to hold or a counter to lean against, but it’s only for short bouts, for example, to put a cup away or clean his teeth. He can walk, too, but only when assisted by another, and even then balance becomes an issue with each step for both himself and the assistant trying to keep him upright. You can imagine the ordeal this causes Aitza, who is hobbit-sized.
We’ve tried walkers but they’re too dangerous for him. Walkers are held out in front of the body. This causes the user to bend forward, throwing all the weight forward and using the device as an unstable prop. A walker is liable to shoot out from under the stooped-over ambulator, leaving the poor soul splayed out on the sidewalk and hoping the crack he heard wasn’t a hip. Consequently, we’ve never allowed Shade to use a walker alone and have all but tossed them.
The LifeGlider
Recently Shade’s uncle Edwin (Tio Loco) discovered a new device called the LifeGlider. Like a walker, the LifeGlider is an ambulatory assistive device, but it is designed to support the body’s center of gravity so that the user can stand upright. That means hands-free walking … real walking like the body was meant to do.
The LifeGlider has restored my confidence in assistive walking devices. One video on the website shows a user transitioning from a walk to a full Superman – legs off the ground, arms splayed out front – and then effortlessly swinging his feet back on the ground. With this kind of balance support, Shade may be able to start walking around the house again. This will help strengthen his legs and give him more confidence in his own balance. Given enough practice, perhaps he could use it at work or in social situations. Who knows what other opportunities might open up if he could stand on his own two feet again?
Like I mentioned in the last blog, we will soon be fundraising for this device and the MyoPro robotic arm (now with flame throwers). Keep your eyes open for the upcoming news.
Good news. Shade had two graduations within a week. Last Friday, he walked on stage to receive his high school diploma at Central Florida Prep, one of the most beautiful graduation ceremonies we’ve ever seen. With a graduating class of six students, each student was highlighted in words and pictures. A truly touching event.
Then this Wednesday, Shade graduated from neurosurgery. In other words, his angiograms show that his AVM is completely gone. Dr. Trumble said that he now has a normal brain. Well, as normal as a Crampton brain can be.
Shade has been working hard to regain his lost progress after the latest stroke nearly a year ago, last May 28. We often go to Planet Fitness, where he uses the weight machines to build up muscle in his left arm and leg. He’s also getting regular PT, OT and ST. Plus, our good friend Danny has helped him do this:
It’s a little blurry, probably because Shade keeps melted Tootsie Rolls in the same pocket as his phone, but you get the picture. Next step, walking.
Mayan and Aitza are galavanting in Manchester, England. This was Mayan’s birthday present from us in November, and Mayan saved up his Christmas money to spend over there. They are windowshopping and seeing the sites. Then tomorrow they will see a Manchester City game. (Proper football, not the American kind where they hardly use their feet.)
Meanwhile, Shade and I have been abandoned at the house. (I said that just to tick off Aitza.) So we decided to have our own adventure … right down the street. Shade walked the entire length of our street without crutches or walker, while I helped him balance by keeping my hands on his shoulders. That helps steady him so he can focus on his pacing and speed. When we saw something interesting, we stopped to check it out. Here are some of the fun, weird things we experienced.
Emergency cut short
A few driveways down was an abandoned Matchbox firetruck. Perhaps it ran out of gas on the way to the fire or got bogged down in the storm that hit us this morning. We believe the driver hitchhiked back to the station because there were tiny footprints leading to the street.
Welcome to the funhouse.
We came to the realization that all cars are funhouse mirrors. The reflections are not slimming. We don’t suggest looking at a reflective car door if you are attempting a New Years resolution diet.
Yuletide detritus
Dry brown Christmas trees have popped up the last couple weeks on the curb. But there are still a few houses in the neighborhood that are decorated with Christmas cheer. (Last year, we kept our decorations up into February.) One house, however, got all the stuff down and then got called away on some emergency. (Perhaps mom looked at her reflection in the car door and now has to be talked down from a ledge.) So Frosty, Santa, Tigger and Pooh are chilling out in the driveway, along with piles of lights and other assorted festive accoutrements.
Wood you hole this for me?
Shade found a piece of wood with the knothole knocked out. Legend says, if you look through the knothole, you can see the invisible street gnomes. This can be disturbing because invisible street gnomes are notorious for not wearing pants. That didn’t stop Shade from staring through it for five minutes.
Shade shows you a trick.
There’s no shopping on our street. (Plenty of looting, but no shopping.) But occasionally you can get a street score. Shade found a cool, reflective sticker on the ground to put on his desk. Woo hoo, free stuff!
Not quite an overseas adventure, but it was an interesting promenade, and the longest walk Shade has done in ages. Shade was exhausted afterward. Lately we’ve been trying to get away from those walking assists like crutches and trying to work on proper walking stature like tightening his core, keeping his shoulders back, and moving his arms so that they swing counter to his legs. When he really focuses, he is able to walk by himself for 10 or more steps. Today he did 16 on the sidewalk. If Shade keeps this up, he may just walk to school one morning.
Every day Shade has been doing special foot and leg exercises given to him by our friend Denny, who knows a bit about recovery from brain injuries. Shade complains but does them. They’re not easy for him. Some aren’t easy for me. Picking up pencils from a smooth wooden floor with your toes is a frustrating task. I tried it. I could only get one in the air. Shade also does a series of squats and steps while holding on to the back of a chair. Great for the core. His favorite is kicking a soccer ball back and forth with his brother. Today, all the exercising paid off. Check out the video. It tells the story better than I ever could. He did this for a good half hour.
Help Shade get mobile again!
Shade's Progress 