Great first day of fundraising for Shade

 

Shade trying out the MyoPro’s sensors

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!

To donate to Shade’s fundraiser, click here.

Shadenator 9000: The Rise of the Shade-borg!

Let’s salute the great cyborgs of our time. RoboCop, Darth Vader, Inspector Gadget, and now the Shadenator 9000, the latest development in Shade technology. But first, this sci-fi tale needs some backstory.

As you are likely aware, Shade’s last two strokes three years ago (17 y.o) paralyzed his left side, wiping out any progress he’d made since his first stroke when he was twelve. (We’d just got him walking again, damn it!) Because his left arm and hand are so weak, they have tightened up, contracting the arm like an L and keeping his fist closed. This caused a vicious cycle. Because tasks are so hard to complete with his left arm and hand, he uses his right, and thus his lefty gets weaker and tighter. We were worried he might lose all use of it.

Then Aitza told me about a friend who started using a robotic device after his stroke and got full use of his arm again. And that’s how we discovered Myomo. It’s not a cult, I swear, though I may be an apostle after Shade and I went to try one out last week with Myomo representative Heather Ward.

Myomo, a contraction of My Own Motion, produces the MyoPro, a powered upper-extremity orthosis that’s straight out of a fanboy’s wet dream. The robotic brace straps on the recipient’s arm from shoulder to fingers. Soft bracelets embedded with sensors are worn on the upper arm and forearm. Like an EMG, they pick up myoelectric signals from the brain that trigger the muscles to contract and move the limb. These signals simultaneously trigger the robot’s motors to move the orthotic in accordance with the desired action. So if Shade wants to extend his arm, that signal is mimicked by the device, which will extend, adding strength to his own arm and allowing him to stretch it out.

Even if the wearer cannot naturally move part of the arm, as long as the brain signal is there, it can be boosted to a level where the orthotic will move it for him/her. For example, Shade cannot move his wrist up and down no matter how much he mentally strains to do so. However, on her laptop, Heather boosted his EMG signal and the robot moved the wrist up and down. Brain power.

Heather demonstrates the MyoPro.

What this means is when Shade straps on his assistive MyoPro robo-brace, he should be able to perform functions with that arm that he’s been unable to do since his second stroke. Things like putting dishes on a high shelf, grabbing a water bottle off a table or petting his precious cat Cheetah. And because he’ll be using his arm more, it will strengthen and loosen up and he may be able to start using his arm more without the device. Plus, I’m shooting for the upgraded version with the laser cannons on it. Pyew, pyew!

What’s more, we’re looking at another device that may help Shade get back on his feet. We’re going to have a fundraiser soon to help with the expense of this device. I’ll tell you about the other device and the upcoming fundraiser in the next blog. Once we get these devices the Shadenator 9000 will be launched.

 

Home slice

It’s been a crazy couple weeks since the post-Christmas hospital mayhem with hospital stays and infections and wound cleaning/packing/wrapping/antibiotics/fluids/pee bottles, okay, you get the picture. Shade’s been a trouper through the process. The boy never complains, though he does make me wash my hands a lot. I’m a scratcher.

Ready for bed on the comfy couch.

For the past weeks, Shade’s slept down stairs on our comfy couch, which is usually my nap paradise because it’s thick and comfy and it sucks you in like you’re Boba Fett gobbled by a Sarlacc. (Nerd alert!) The couch’s only downfall is that it’s a bit “sucky.” It feeds on left socks and remote controls, and there’s hidden candy corns down there from Halloween 2009. And if you’re looking for your iPhone, it’s eaten a few of those, too.

We’re not sure why, but our homebound nurse care and therapies got cut. We’ve been doing therapy and wrapping his wounds ourselves on the comfy couch. Good job Arianny and Aitza are nurses. If you didn’t know, Aitza was a surgical nurse in Venezuela. She worked in plastic surgery. And Arianny follows in Mami’s footsteps. Her visit with us lasted a week. Together they made up a good schedule of cleaning and changing Shade’s open leg wound, while I gave them cheers and moral support and occasionally gagged because gross. I’m no nurse. I’m the guy that will make you a cup of tea while you’re squirting saline into that open muscle and mopping up any effluence. I call that Nurse Porn. Arianny and Aitza are always talking about the grossest stuff they experienced in hospitals, especially during dinner. I cover my ears and go, la la la, as they’ll regale an audience about the adventures of flushing an impacted colon while scooping from a plate of seven-layer bean dip. Or the time the had to remove a massive cockroach burrowed deep in a lady’s eardrum. Hwork!

But I had to overcome my fickle gorge and man up, because on January 5, Nurse Angel Arianny left for home in NYC, so Aitza took over and trained me with Wound Tending 101. I gloved up while she opened the packs of gauze and sterilized the tweezer. Shade’s right thigh now has a two-inch open gash that has exposed muscle but it’s healing up from the inside out as per doctor’s orders. It’s closed up a lot so far. You can see the healing day by day. Aitza had me remove, clean and repack, gauze and wrap the wound.

Oh, yeah, Aitza turned 35 again.

Then it’s goodbye Nurse Angel Aitza as she lollygags in London. Actually, it’s a work thing. On January 8, she was sent to the home office back in the UK for an important spy mission or something. So Nurse Vincent is on the job. I haven’t screwed up yet, which is good.

But back to the “no homecare” thing from before – Aitza’s been trying to get the homecare here and she was told that the homecare was revoked. We’re in a tornado of calls to various doctors and nurses and social services and (shudder) insurance to get the homecare and therapies reinstated. Yay, fun with bureaucracy.

Forgive the mess. We’re remodeling, too! Like we don’t have our plate full already.

Meanwhile, while waiting for Mami to come home, Shade and I have been sitting on the comfy couch, eating pizza and fried chicken and watching educational films like From Dusk to Dawn and Monty Python and the Holy Grail. Ni! Ni! Ni! (Nerd Alert!)

 

 

 

This Path

Back in my college days, I read a book by Richard Bach entitled “One,” in which the main character encounters alternate paths of his life, all of which were happening simultaneously. To boil it down, it’s Fate meets Chance: the particular life you are living is one of endless lives that have happened and could happen and yet this particular life couldn’t be any different. A choice, a happenstance, a situation is merely a turn down a path that was already there and could be no different because it’s that path. And yet another quite different path could be chosen — or stumbled into or thrust upon — because that path is there, too. Infinite options all laid out.

Alright, maybe that’s a bunch of hippy shit, but it helps me cope with Shade’s recent stroke Saturday, May 28, his second in five years. Aitza, Shade’s blessed mother, the rock of our family, was called from slumber by Shade’s distressed calls last Saturday. He couldn’t move his left side. She dialed 911 and he was rushed to Florida Hospital.

I recieved the call from the other side of the damned continent, The Gorge in Washington, where I was working the Sasquatch Festival. I was shooting a Chet Faker concert for Yahoo, my first time behind the camera at a live music venue, so I was pretty stoked. As I focused in on the singer, I felt my phone vibrating in my pocket. It stopped, and then went off again. And again. And again. I knew something was wrong before I ever pulled the phone from my pocket.

Many already know the circumstances through Aitza’s Facebook posts. (Those posts were all her, by the way. And I think she’s a damned great writer.) For those unaware, the gamma knife surgery he had back in December caused a blister in the pons (brainstem) which burst. It wasn’t a huge bleed like his first stroke, but it did release blood, which caused swelling in the brain and the paralysis on his left side.

Aitza and I discussed what I should do. Despite his injury, Shade’s life wasn’t in immediate danger. And obviously we were going to need the paycheck from this job to pay the ominous mountain of hospital debt now looming once again on the horizon. So we both decided I should stay. It killed me, but it was the best thing. God bless Facetime. I at least got to see and talk to my boy.

Florida Hospital for Children ran tests and monitored him. The bleed area is contained so now it’s a waiting game. Yesterday he arrived at Brooks Rehabilitation in Jacksonville, which is considered one of the top rehab centers in the country. We’ll update you more on that. (To join Shade’s Facebook page click on the column to the right.)

When I finally made it back to Orlando at 6:00 a.m. Wednesday, I drove straight to the hospital to find Shade and Aitza asleep. It was a weird deja vu moment recounting 2011, my family hunkered down once again in the PICU. But this time, I wasn’t afraid. We’d already battled the beast once and crushed it. This pathetic attempt to strike again will face up to the same strength that destroyed it before.

I only had to spend one day in that hospital to know this. Because Shade was cracking jokes and wooing the nurses and trying his damnedest to move those limbs. And yeah, he cried a few times, because there’s genuine loss, near half his body. But he didn’t drown in sorrow. It was more like a quick rain gust that washed over him before the sun poked out. That boy is the strongest person I know. (Mom’s a close second.)

There’s a path in which our family falls apart. There’s a path in which Shade never had a stroke. There’s a path where Shade died. We’re not on any of those paths. We’re on this one, the one where Shade’s healing, and our family is going to love each other and laugh with each other no matter where the path takes us.

Walk this way

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.

I’m walking, yes indeed!

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.

Taking things for granted

Shade’s had a good summer

As of late, I’ve been thinking about how much I take for granted. Or as I’ve read in many a student essay: taking things for granite. What a lovely concept. I have a great family, nice house, meals on the table, but I often mistake them for a granular igneous rock out of which I might just make a kitchen counter. So goeth the English language, a living organism that metamorphoses daily through the goofs of the users.

I take for granted that my son survived a deadly stroke. I take for granted that he’s able to go to school and participate in classes. I want to stop taking everything for granted. I want to write about the greatness that happens daily but has been invisible because I’ve been living in my own microcosm. It’s a selfishness that has become my norm. My life is easier when I refuse to look outside the safety boundaries I’ve created for myself, when I keep my thoughts to myself.

See that. I managed to redirect that last paragraph to me (selfish) when my real focus should be Shade. He started eleventh grade this Monday at Central Florida Prep, two weeks before public school. He was ready. He had been volunteering as a Junior Counselor at St. Paul’s Presbyterian Blast Camp, the summer camp he was going to when he had the stroke. He worked with the young’uns, keeping them in line, helping them with activities, etc. He liked it, but I think he was ready to hang out with kids his own age again.

Of course, with school comes another year of struggling with homework. Yet somehow he manages to clear a bit of space in his injured brain to pack in advanced learning. He’s taking Geometry and U.S. History and Business. I hope his brain allows him to utilize these ideas in his future. He still has problems with long-term memory. The ideas flit around the surface but don’t like to bury deep in his mind.

That’s another thing I take for granted: my brain. It’s a lovely brain, but it could go at any moment. So could yours. Don’t freak out about that. Just appreciate it while you have it.

Shade is in mid-teen mutation as well. He’s sprouting up like the unkempt bougainvillea in my backyard. (I’m a lazy gardener.) He’s dealing with acne, which drives him nuts. It angers me a bit that he has to have acne, as if being angry helps. It’s as if Loki the trickster god thought, Here’s an easy target. Let’s give him one more issue to deal with. Hey, Loki, you deadened half his face already. He can’t shut his right eye. Quit torturing the kid.

He’s still rolling around in a wheelchair, but he goes to therapy every week to practice his walking. If only he could get his balance back. He’s got plenty of strength, but he still topples like a hewn pine when he takes a step. He can stand and crouch. He stands for long periods of time without assistance, but as soon as he takes a step, he falls. Is there another part of the brain that balance shifts to when the foot is put in motion? Must be.

There are new technologies that might help. WeHab uses a Wii Balance Board to help stroke victims regain balance through feedback. KIINCE is a company that developed a rehab machine that helps rebuild neuro-pathways that control balance. And Aitza’s got a friend who had a stroke that is undergoing an experimental stem cell procedure that may help him walk again. We’re looking into some of these. But as of now, he’s going to be in a long-term relationship with his roller.

Anyway, I thought some of you might want an update on Shade’s Progress. Aitza constantly tells me: There are people out there that need to know about him, people that have had strokes or traumatic brain injuries and want to see what others have been through. Shade can still inspire. He’s got that power. I guess that’s part of the “not taking it for granted” thing.

Ear worms

It’s 3 a.m. and I can’t sleep. I’ve had recurring insomnia for a month now. It’s distressing. I am plagued with ear worms, those endlessly repeating melodies that drill into your brain, muddle your thoughts, and wake you in the middle of the night, or worse, don’t let you fall asleep period. And they’re awful songs, too. A man could lose his mind hearing “Gangnam Style” 50,000 times inside his skull. Why can’t I have Radiohead stuck in my noggin? I’m currently listening to Classical music to try and scour the toxic tunes from my mind. It’s not working though. That obnoxious Korean pop star’s “Op Op-op-op Op” is clown dancing on the melodic notes and crushing them underfoot.

Part of the issue is I’m now taking anti-depressants. I haven’t felt the same since Shade’s situation, having intense feelings of depression and lethargy and irritability, so I decided to try a chemical route. The good thing is I am feeling calmer. The bad thing is the medicine exacerbated my insomnia. Now I’m exhausted but I have a feeble smile on my face.

However, the kids and Aitza have noticed a change in my mood for the better. The boys said I haven’t been a drill sergeant lately. I guess that’s possibly worth risking insanity through lack of sleep. However, I fear I’m going to become Tyler Durden. Anyone up for joining my anarchist, anti-establishment, basement Fight Club? Multiple personalities and delusional schizophrenics welcome.

This past weekend, I took the kids on the first Indian Guides camp out of the season at Warren Willis campgrounds in Fruitland. My brother Darren came out, too, with son Brody for his first camp out ever. They’re hooked. How could they not be?  Indian Guides is the best father/son program on the planet.

The area where we camped was fairly grassy, so Shade managed well in his chair. I rarely felt like he was left out of events because of his limited movement. Not that it was easy. I ended up pushing him a few miles back and forth over rough terrain, and by Sunday morning, my thighs were aching. Put that in your video, P90X!

Shade showed off his new trick during the weekend. I helped him stand and then held him by the hands while he bent his knees and then leaped in the air. He cleared about a foot. His landings were a bit rough, and he often sank down to his knees, but he would pull himself back up and do it over and over. Since he first tried it on Saturday, he keeps saying to me, “Let’s jump, dad.”

Many of the kids and dads we camped with hadn’t seen Shade in a while and remarked on how well he was doing since the last time they saw him. Often I don’t see the progress because he makes small incremental improvements on a daily basis, but that gap of a few months made a huge difference to our fellow campers. That gives me hope for future progress. I can feel that he’s nearing crutches mode. Once he’s up on his feet, there will be no stopping him.

I’m going to try to sleep again. I’ve got some Handel playing and the ear worm seems to have taken a nap. Perhaps Baroque music is the cure to the ear worm.

This may hurt a bit

So Aitza and I are watching the late night news last night in bed when a report comes on about a brothel that a local State representative was caught frequenting, which subsequently ruined his career. The anchor is listing local people that were involved in the scandal. Then suddenly her dentist’s mug is taking up the screen. As soon as they named him, she shot straight up. “Whaaaaaaaaa!” Seems he’s been using his dentist chairs for more than just cleanings. She’s been going to him for 20 years, but only to get her cavity filled. I mean, um, just to get the drill. Ooof. Open wide and say ahhh. Nope. Okay, new topic.

At home this morning, Shade attempted to write an essay in 45 minutes for a standardized test today. I think it’s a benchmark thingie. He got through 3 sentences. His brain just froze as he stared at the computer screen. I’ve had writer’s block before, but his was DEFCON 1 level. Aitza worked with him later today by having him verbally write his essay while he recorded it. I’m not sure if they will allow that with this test. But tomorrow morning I’m going to have him listen to the recording and transcribe his ideas.

This week is our first camp out for Indian Guides. We don’t have access to the 4 wheeler like last year, so it may be tougher getting around the bear traps, poison ivy and quicksand, but we’ll manage. I was hoping he’d be able to walk with crutches by now. That may still be some time away.

But he is making progress. On the weekend I asked Shade if he wanted a grilled cheese sandwich. Of course, he said yes because grilled cheese sandwiches are awesome. But I said, “Okay, but you have to make it.” So he came over to the kitchen counter, stood up and made all our sandwiches. He sliced the cheese and put it on the bread and slid them in the mini oven. One of his goals right from the start of his physical therapy was to stand up and make a taco. So I figure next week, we’ll do just that. I might have him cook the whole meal.

When Myrna, Shade’s PT, heard this, she was very happy. So she tried him out on an activity. He stood at a high table and put pegs in a peg board to create a flower design. He stood there for 5 minutes working the board without holding onto a handle. Myrna also measured his range of motion and strength and flexibility. She was happy with all the results except for his knee stretches. His hammies are way too tight.

We’re also gearing up for Halloween. Shade is going to be a Zombie Taco Cat, a mutated creation birthed from his own demented brain. We bought the URL two years ago for his birthday, though he’s yet to use the site. Mayan is a psycho clown, and that’s going to be his costume, too. Actually that is also part of the theme for our Indian Guides Halloween Carnival, which is on October 20. We’re having a top-notch haunted house with evil clowns (our haunted house causes severe psychological damage), games, bounce houses, silent auction, and a special storytelling experience with yours truly. I’m going to be telling funny spooky stories, singing songs, doing interactive stuff and basically making an idiot of myself, which I excel at. All are invited, so bring the kiddies or the oldies.

And finally, big sis Arianny is flying in to visit tomorrow. She’s coming to celebrate Wita’s birthday (Wita is Aitza’s mom). But she’ll also be hanging with her bros and telling disgusting stories about disease-ridden geriatrics bazooka-barfing blood or some such horrific tales. If we’re lucky, brother Edwin might make his normal 15 minute appearance, too. (Mami made me say that, Edwin.)

Tried to make me go to rehab

We’re making a few changes in Shade’s rehab. The schedule was a bit overwhelming with school, so we are cutting his therapy down to only Tuesdays for PT and OT. His speech therapy has really become memory practice, and he’s getting plenty of that learning about conquistadors and algebraic equations at school. Once Shade gets nerve graft surgery in his face, we’ll look into speech therapy again. In place of his lost therapies, we will be hitting the YMCA gym more often. He’s pumping iron now (machine weights, not free weights), and I think he enjoys it more. It makes him feel like a teen working on his body, not a tot being forced by a stern matron to do stretches and exercises. The YMCA doesn’t make a person feel like an invalid either. (Although after doing their cardio-fitness workouts, I often do feel like one.) Shade will also restart hippotherapy. (Which, by the way, couldn’t be possible if the conquistadors hadn’t brought over the first horses to Florida in the 1500s. Thanks, Ponce de Leon.)

Camping season is starting up soon, and the boys are excited. I was hoping Shade would be walking by now so he could have a bit more freedom at the camps but we’ll make do. I’d like to get a 4-wheel drive wheelchair for him to crush through the brush, but I don’t think they make all-terrain handicap assistance vehicles. By the way, our Indian Guides tribe is named for the Calusa tribe, who just happened to be the demise of Ponce de Leon. Thankfully, they didn’t kill all the horses.

Keep in mind that Shade’s Super Stride 5K Fun Run is this Saturday, Sept. 15 at 7 a.m. at Blanchard Park. Park at the YMCA in Blanchard Park. By the way, the first 100 people to show up will get T-shirts with Shade’s Super Stride logo. We’ll also have water bottles with the logo on it and other goodies and giveaways. Thanks to all who are helping out and donating to our cause. Don’t forget to wear your cape! There will be a special appearance by the most delicious super hero of all, The Baconator!