Most important for our bicycle comrades, Gabe IS receiving daily Tour de France coverage on the television network Versus, channel 63 at Brewer Rehab. I got back from my bike trip to Nova Scotia expecting a whole lot of loving, but we ended up watching the Tour for two hours instead. True womance. Yesterday we watched on and off between therapies and during meals—he’s quick to unmute after the commercial breaks.

The last weekend in June, one of our friends, Zach, invited us to a bowling birthday bonanza, formal attire kindly requested. Gabe and I dedicated the evening prior to baking chocolate cayenne cupcakes. I set up all the ingredients, then he dumped them in and mixed altogether; I put and removed from the oven, and he mixed and applied the icing.

Bakin’ cupcakes for Zach

The next night was the bowl. He opted to sit and enjoy vs. bowl, drinking in the crowd, the music, and the bowling balls rolling down the lanes (or gutters). One of his first journeys out of Brewer Rehab was to the nearby dollar store, which he found overwhelming–how can a dollar store NOT be overwhelming and completely distracting? The lights, color, music, people, and product fits together on a grid of aisles and shelves that’s a perceptual challenge for his brain scramble. But he was clear on the fact that he enjoyed this experience, and wanted to get used to public environments again. From that time to the bowling party, he’s finding greater focus and less struggle in perceiving everything at once. He needs supervision and assistance navigating, but nevertheless he’s making a step forward.

Sitting, enjoying the bowling party / Evidence he’s retained his sense of humor

Also at the end of June, Gabe and I had a pre-birthday birthday celebration prior to my Nova Scotia trip. We put on fine duds and attended a One-Act play, Under the Big, Blue Tarp, at the Penobscot Theatre in downtown Bangor. A comedy, it lasted 70 minutes and his newly audible laugh—a staccato mmm—echoed to my left more than a few times. The next play was a drama so we beat it onto Main, passing through the Gay Pride Festival to ice ourselves out on iced coffee at our coffeehouse of choice, Giacomo’s (“Jah-cah-moes,” Gabe says for each time I slip with “guaca-mole”).

In the Penobscot Theatre before the show / Passing through Gay Pride Fest

We cruised on foot & wheel up to the little street where Summer and her man Larry reside; Allison, G’s best college chum, and I also live in surrounding apartments. All three pads are upstairs or downstairs, so we were content to sit beside the basil and hops. Summer showered G with chocolate-covered strawberries and pretzels she had just made. The two of us took off to a womance-filled dinner at Fiddlehead, an illustrious dining experience.

Sampling Summer’s chocolate-covered pretzels and strawberries

Sipping bellinis in the window of Fiddlehead

4th of July weekend, our good friend from NYC, Andras, zoomed north on his motorcycle. He spent two days hanging out, to which Gabe recounted happily to me by phone. I could literally hear him smiling. That same weekend, a holiday BBQ at Summer’s went down, complete with bocce. The maple leaf hats are handcrafted by Brie. I wasn’t there for this, but did talk with Gabe the next day from a payphone in Baddeck, Nova Scotia. He sang from memory “The Star-Spangled Banner,” recalling 90% of the words—even I don’t know that much.

Andras visits

The Maple King / Wild action shot of bocce

Under Donna’s guidance, he’s been cranking out real, handwritten letters as of late. Writing is an activity she attacked as early as October and November. It started as an exercise just to get the pen tip to touch paper, cluing us into the depth of field issues he experienced at the time. When that was mastered, she began with his name. While that was the one word we could read, the remainder of his letters was small, cramped, and indistinguishable as shapes. As time proceeded, his words became easier to read. By late winter, he began signing cards, whispering the special messages he wanted written inside. Looking at the product of his writing exercises, we joked that his handwriting was as bad as it was before the bike crash. Since arriving in Maine this May, Donna’s picked up pencils, pens, crayons, colored pencils—all of varying thickness—to use on printing paper, lined paper, graph paper, and children’s writing pads. What’s yielded the best results I’m not sure—you have to ask her! But what you can see overall is an undeniable return to his former, legible handwriting, albeit oversized. She’s given him as much practice as possible, and now he’s writing his own full-blown messages in birthday cards, Father’s Day cards, and thank-you cards.

Writing sample: June 2010 vs. February 2009 (bottom right)

Two weeks ago, Gabe received a Botox treatment in his left arm, and lower calves to release excess tone. Recap: constantly firing neurons create high amounts of tone present in certain muscles, causing them to work 24/7. We referred to this earlier as spasticity, which is an aggregate amount of tone, however his spasticity is so mild now that we hear it now referred to simply as tone. Still, it’s enough to keep his left arm from fully extending, thus the Botox treatment to freeze the muscles and allow the triceps to kick in vs. the ever-active bicep. After the 10-14 day period to hit its peak, he’s moving that left arm and the left leg a bit more easily. And you thought Botox was just for erasing wrinkles.

Myes.

We’ve some good events planned for the summer, to include some fishing at a handicap-accessible pond in the area, a trip to Bar Harbor, and a couple of weddings. He’s recently had some practice getting in and out of Donna’s minivan, so with a little bit more perfected sitting balance and magically attaining a non-power wheelchair, he can try to manually push himself around and we’ll be able to ditch the Fajita van on some outings (the Fajita van is actually really wonderful, except Gabe sits so high that he can’t see out the windows! Also, unable to sit in front passenger seat since one has to climb up into it).

I bring up the following because it’s a fact he’s quite happy about: Gabe’s hair loss has abated. “What?” you say, to which I respond, “Yes, hair loss.” From late February to end of March, Gabe’s ‘do thinned rapidly from forehead to crown, ear to ear. Donna perceived this quickly and noted it to medical staff, who explained that it could be stress-induced, medication-induced, or just that time for that particular chromosome to set free some hair follicles. Certainly his stress isn’t any less, so we attribute it to a specific medication he was on for six weeks. Since discontinuation, his hair has filled back in completely and it’s cut as short as ever to fight off the summer heat. FYI, his ability to grow a beard never slackened, as evidence by the moustache he sported for three months.

As you can probably guess, what you read here can be watered down from the dramatic and comedic instances that happen. You don’t hear about the play-by-play of insurance calls, medical concerns, rehab ups and downs, uncountable victories, and conversation exchanges because either they weren’t worth writing about at the time, or what was more likely, we were just too sensitive to share them. But I feel like the line between what’s shared and what isn’t has rapidly faded in recent months. Gabe is medically stable and has had a remarkable return to himself mentally, emotionally, as well as his intelligence. If one only has THE TIME and THE PATIENCE to sit, speak, listen, and observe, the pre-accident Gabe is easily picked out from the fumbling of relearning how to speak, to move, to grasp all that is perceptually going on in a room or environment. He’s so alive and ripe with utter Gabeness as ever before.

G-Star & Kierie

Fitting right into the fruit section, then demanding all the latkes in the house

Yes, fun was had. We pushed on to Brewer, Maine, passing the time with music and reading “Marley and Me” out loud. We got in to Brewer Rehab around 8.30pm and Mike the Dad awaited us, having seen to Gabe’s proper accommodations and his needs being met on that first night. Donna and I drove the Fajita van 16 miles to the house in Winterport, and promptly, passed out.

Pray tell, what has elapsed in the last five, six weeks since our arrival?

Gabe is where he was born, bred, and schooled, in the greater Bangor area of Maine. His family is close by and chooses to see him when they wish, & his friends from college & before visit when they can.

Gabe playing a board game, Labyrinth, with his sis & me.Working in his elevated garden built by Donna and a neighbor.

His stay at Brewer Rehab has no end date at this time. He could be there two more months, or maybe four or seven. His stay was supposed to be short, so new “furniture” for the house, like a bed and shower bench, could be tracked down; but the purpose shifted when we looked seriously at the therapy time and quality available in an home environment vs. a rehab center. He’s receiving four hours of dedicated rehab each day at Brewer Rehab, something he just wouldn’t get at home when he needs it the most. This is like pumping iron at the gym for three hours, then being quizzed on your mental agility for an hour after that. We would like him to stay on here until he can reach some pretty lofty goals: walk, talk, and do some activities independently.

If you follow him on Facebook, you’ve read his testaments. His speaking is coming along incredibly well—he’s moving from 2-3 word phrases to sentences. It doesn’t sound like much maybe since the last update, but there’s a lot of coordination going on that he’s succeeding at, and it’s rather remarkable he’s come this far this early in the game. A specialist speech pathologist visited Gabe almost two weeks ago to determine whether or not he needs an augmentative communication device, a piece of technology that would do the talking for him by pressing icons. The specialist explained that if he did have one, it would be used short-term, and he might as well use his iPad in that case; he also mentioned that G has a hard time starting and stopping saying some words with particular letters (i.e. “five” becomes “five-ah”), which is due to an unconnected auditory feedback loop. There are several factors at play here: his brain forming messages, their relay down to his mouth, his lungs welling up with air to speak on exhale, the vocal chords transforming the message into voice, and his lips and tongue giving the voice shape and texture through consonant and vowel. The coordination of air and voice is a step behind his brain’s messages and the words forming on his lips. It’s kind of like getting bad cell phone reception and you can hear yourself speak. Annoying. But this auditory feedback loop is expected to close as his vocal chords becomes stretched out. They’re so tight right now his pitch sounds like an octave higher than mine. Though to his credit, he’s learned a sweet, little trick to touch right behind his Adam’s apple and his voice drops to his previous tone. In the last few days especially he doesn’t even need the trick to have a deeper voice.

We’re beginning to use this new voice out on the town. The beautiful thing about Brewer Rehab is that he can leave on day trips, and in the next month or so we’ll start doing overnights to his parents’ place, a.k.a. his childhood home. Every Sunday he goes home for the day, and we’ve had a family-and-friends BBQ and Father’s Day bash.

Welcome Home BBQ / Nomming the BBQ goods (click here for more pics)

During a recent outside doc visit, he blew off lunch at the facility for ice coffee and a vegetable-mozzarella panini in the local downtown Bangor coffee shop. He takes trips over to his dad’s boot shop, the local grocery store, and a coupla weeks ago we got a crew together and stormed Dysart’s—THE ultimate trucker stop with full-serve restaurant. He ordered the Paul Bunyan Maine Blueberry Pancake Platter with the waitress, his voice rising above the din of the Satuday night crowd. These outings sound mellow for you and me, but Gabe describes his injury as “moving in slow motion,” so the lights, crowd, product selection, and bad music of even the nearby dollar store is an Event. He’s got to practice looking again, practice hearing and smelling again; he’s got to practice making choices to all that he perceives in an environment wider than the hospital grounds he was confined to for nine solid months.

His muscle strength has gained in the last two months as well. Though his left side is still very weak, his arm and leg are improving his body mechanics. He needs less assistance to stand up, to get into bed, to sit. He still needs help, but his progress is encouraging and his therapists have positive expectations. Speaking of, can I just set the record straight for anyone out there who thinks Maine is the sticks and lacking in effective therapists? The team he has here is high caliber and there isn’t one weak link in speech, occupational, or physical therapy. Our general reaction is, “Damn!” if one of them is gone on vacation.

Gabe sits for 20 minutes unassisted & without correction. Landmark.

There’s more to report, and I have some good stories to share. More to post next week. His fam and I are adjusting just fine. I’m sure it’s very restorative for Mike and Summer to have Gabe nearby, but I’ll let them speak to that! Donna fell back into step quickly once home, picking up her cello once again and heading back to the Neighbor’s Cupboard, a low-income food pantry. I’m in a whole new world, but it’s cool and pretty and adventurous as I try to find my feet. Now I’m off to a bike tour in Nova Scotia, so seriously, stories for you next week on the Gabe front.

Much love,

-Kierie.

]]> http://www.getbettergabe.com/2010/06/28/the-welcome-wagon/feed/ 2 http://www.getbettergabe.com/2010/05/11/maine-or-bust/ http://www.getbettergabe.com/2010/05/11/maine-or-bust/#comments Wed, 12 May 2010 04:07:50 +0000 Kierie http://www.getbettergabe.com/?p=549 Hey! So, we’re leaving tomorrow!

Leaving New Hampshire. Headed for Maine. Supposedly. We’re assuming. You never know though. It can actually be difficult to escape from institutions when one’s been confined to their walls for nine months of rehabilitation and labyrinthine insurance bureaucracy is involved.

But let’s assume all goes as planned and we wave goodbye to Crotched Mountain, then Donna, Gabe, and I cross the border to the long-awaited goal of HOME.

Er…eh…or something close to it. About 20 minutes away. The goal was to bring Gabe straight home from Crotched Mountain, but navigating the spindly thorns of insurance has proved difficult to get all the tools needed for the home. Like the right bed. And a good shower chair. Really basic things he needs for adaptive living. As a result, Gabe will spend a week or two at Brewer Rehab in the Winterport/Bangor area while Donna and I tie up these loose ends. Gabe is very understanding of these issues and agrees its for the best so we’re not scrambling and ending up with the wrong items–like a bed meant for a 5′10 tall gentleman instead of one who’s 6′5! Gabe’s unexpected waylay will be a benefit in more ways than one however–it will give us–Donna, Mike, and I–time to settle into living together, and with Summer’s help, set everything up for a grand homecoming for Gabe.

Ok, with that, here are some entertaining pictures of The Dude:

1) Hand cycling,

2) Nomming a bagel (New York here we come!)

3) Nomming pizza (We’re really serious, New York!)

4) Shaving off the ’stache. Using trimmer on electric razor.

Funny story about the ’stache: Gabe has rocked it exactly 3 months to the day he decided to came off. Ian of Icarus Frames and Dan Flannery visited one evening back in Boston and commented on Gabe’s monumental beard growth. Their encouragement to shave it down to the upper lip sparked Fajita’s ’stache to stick around just long enough for his dad to see it in person; then long enough for the Daytona 500; then just long enough til he could shave it himself. That day was last night. I’m pretty sure it could have come a lot sooner, but to his credit D and I hadn’t really encouraged him until now. So there you go. His moustache could be bested by none but Snidely Whiplash.

Also in the news, Gabe has said some absolutely hilarious things in real voice lately. It’s the #1 thing he wants next in his recovery, so we’re encouraging him as much as we can this last week. There are many exercises and strategies, and he picks up speed like a stone on the roll when he gets going. “Cept the other night when I requested voice-check prior to bed and he replied, “Have mercy.” He had a smile on the corner of his mouth with that one. My sis gifted him an Ugly Doll, and yesterday with Donna he named it “Eh, Steve!” Some may remember that this is a long-time Gabe quote. And he had an excellent retort for anyone who dare insult his mother. These are only a few examples of more to come.

And there you have it. A coupla stories, a coupla pictures, and the knowledge that we’re fiending for Maine so bad we may end up in a hotel room in Portland tomorrow night just to hit the border.

Gabe got a new ride yesterday. The electric kind. He’s trialing a power wheelchair so he can get around of his own will. After dinner we motored around the two main buildings of Crotched Mountain, heading across the lawn in a rear-wheel drive chair that dominated grass, dirt, sand, and steep incline up to the cafeteria. Testament to nothing standing between Gabe and sugar. Really, we went to chat up our friend Leo, the chef who actually makes tasty, quality food (one wouldn’t assume so given this a hospital establishment). We enjoyed a brownie on the way.

G and I have resumed dates this week. Of course, we had the occasional occasion to attend in the last eight months–a CT scan here, a romp down to a locked bicycle there–but now we’re having dates and actually making plans to have more dates. Like the brownies we baked in the OT kitchen yesterday afternoon. And the Dinner & a Movie date two days ago. And, of course, I can’t exclude today’s High Tea in The House of the Seven Gables, followed by the romantic kiss shared in the gazebo overlooking the Wapack Mountain Range. There’s a plan that when we visit NYC later this year, we’ll relive our first date at the Met and Candle Cafe. And we’re looking forward to catching Allison’s band playing in Bangor and cruising down the streets of Belfast. Perhaps an idyllic ride on his future tandem trike?? This may sound a bit ridiculous I understand, but try going eight months under hospital arrest with the one you love. The little things, the private, self-sufficient, moments are victories.

=

Now where did I go off-course. The power wheelchair. I think it’s incredible, and for him it must be excruciatingly so. I remember there were times sitting along the Charles River last month, someone would come up from behind his manual chair, speak, laugh, pat his shoulder, and he wouldn’t have an idea of that person’s face. Or a train would pass and we’d all turn to look, but there he was, facing the Canada Geese we were just observing. The thing about Gabe’s injury is this loss of left side motor movement: it prohibits self-guided navigation and freedom to look where he wants to look, go where he wants to go. To put it simply, if he doesn’t have the use of his left arm to propel a wheel, he can’t drive a straight line and is only going to end up against the wall. Thus the need to be pushed everywhere, and controlled by where the Someone Pushing wants to go.

So this powerchair alleviates that. He is given a certain amount of free will, independence, autonomy. I already see the difference in him. His is given back the gift of mobility. And he’s a fabulous driver. Much improved than his initial trials with Kentfield PT and Spaulding PT. I’ve heard it said that one isn’t offered a powerchair until at least six months post-accident anyway, so the brain can heal. Granted he needs a certain amount of chaperoning in the coming months, but the man can be a little more on his own now. And we can relieve our backs and not worry about pushing around 278 lbs!

“All mankind is divided into three classes: those that are immovable, those that are movable, and those that move.”  -Benjamin Franklin.

p.s. Here’s a very informative New Hampshire video sent to us recently. Everything you need to know about this beautiful state. Gabe gives it an Emphatic Thumbs-Up.

Greenfield to be exact. Crotched Mountain Rehabilitation Center to get specific. Gabe discharged from that hospital by the Charles and of well-written repute, Spaulding Rehab, this past Monday. His ambulance and the Mother Hen Mobile (a.k.a. Donna’s minivan) crept up Route 3 toward the border of a state who’s motto sounds more imminent than the landscape and inhabitants have turned out, so far, to be.

Crotched Mountain certainly is less hospital-esque. It lacks the sterile feeling of his previous accommodations. As his aunt put it upon hearing about the facilities, “Cheese-Is-Sliced, it’s a resort!” Semi-private bedroom fully-furnished, communal dining room, living room, mood lighting…even a bathtub with jacuzzi jets. And surprisingly, his 6′5 frame fits in it less pretzel-like than we anticipated. Tomorrow he and I have a date baking brownies–with a real oven–in the OT kitchen (dates are an important part of therapy, you know). There’s a library to boot, primarily serving the CM School membership, but a school nonetheless. And a basketball gym. Tonight we played air hockey.

This stop on the circuit lasts 30 days and is a “finishing school” of sorts, focusing more on “achievable” functional goals (i.e. showering, toileting, self-feeding, independence, etc.) while preparing him (er, ah, and us) for discharge home. A more notable event is Gabe’s bout of cycling last week with the Therapeutic Recreation team. The machine in question was an adaptive tricycle fabricated by Rifton, a disability equipment company. Just after dinner as a last-minute thought, the Recreation Therapist (TR) dropped in and said, “It’s late, but how bout a ride?” As soon as Gabe saw it, he wanted on it. Considering he hasn’t ridden a bike (trike, whatever) since ye ole fateful day exactly eight months ago, he rode fabulously that night:

So it seems to us that a trike is an essential piece of equipment for home. And you can be sure that the proceeds from the Red Hook Criterium, thrown by Dave August Trimble and now in its 3rd year, will be put toward this. Well, not necessarily this model–the aim is engineered and handbuilt. Thanks Dave and the racers that contributed to Gabe’s future set of wheels. This is going to refuel his passions. Expect us on Kissena Velodrome this fall.

Another highlight: the iPad. He’s wanted one since he heard about it, and the Assistive Technology Center here at CM loaned theirs to him over the weekend. He’s even more resolute on acquiring one–specifically the 3G/wifi/64 Gig model. The laptop lay stashed the last four days as he tinkered, fiddled, and downloaded with occasional assistance. There isn’t a lot of babysitting when it comes to the computer or this iPad: just put it in front of him and let him go, get used to the contraption with his current physical disability. No photos of this, but G, his fam, and I want to extend a heartfelt thank-you to Brantley Archer, Joshua Robot, Mila Poplova, Artum Poplov, and G’s cousins Al and Gail for their donations with this specific purchase in mind. It’s extremely thoughtful of you guys to kick in monies to something that will also refuel a passion, and also be a critical tool toward independence.

Hmm, what else? Behind the scenes, Mike and Summer are preparing the house at home, painting G’s room with the swatch he picked out, building the fanfare. Donna and I are hanging in there. We are the Ever-Present. Actually, NH is more relaxed and has an easier pace than Boston or Cali. You know, mountains and all. When we were in California, each Thursday was met with frantic antici                               pation about whether insurance would shuttle G–and we–on to the acute rehab leg of this affair; after three and a half months of that and we landed in Beantown. Three months later, here we are in New England paradiso. Three seasons, three months, three steps away from the thin line that marked his file medically acute since August. So yeah, Donna and I are finally loosening up some and we’ve been going out, and dining white-table in Nashua, and sauntering down Main in Peterborough. I’m also weirdly into doing math problems in my spare time. Donna’s coolly been reading Willa Cather’s The Professor’s House.

Conveniently, Crotched Mountain offers family housing and we’re a 60-second hike to his room. The place we live is right on campus: a house: rustic, quaint, and utterly solitary. We are usually the only ones in it. The rooms are so spacious they seem empty, the floorboards creak, and the wallpaper floral. I have a particularly affectionate–albeit sinister name–for it. Donna suggests the House of the Seven Gables, as it catches the same drift. Truly, it’s as good as our last nine abodes (’cept we’re missing Swans and Marmalades).

Enjoy the above, more tomorrow as the last few days have been kick-ass.

When Gabe was injured the family was plunged into the Alternate Universe. It is the dimension where we are challenged every day yet rewarded by the more than coincidence happenings that leave you wondering and nodding that yet another Alternate Universe happening has occurred. Gabe’s traveling nurse on the trip East was Allen Friend. Can there be any more appropriate name for a fortuitous journey? A young woman I met yesterday in Porter Square took the time to tell me about her sweetheart who fell to his death and in death had gifted six organ donations. She hugged me to her when I told her our Gabe was going to be fine. We cried together. Her last name was Gabriel.

The Spaulding speech therapist’s last day with Gabe before she went on vacation and Gabe leaves for New Hampshire was this Friday. And Friday was the day Gabe first spoke word after word to her, not in his usual whisper but using vocal cords they had both been struggling one frustrating hour after another to awaken. She was ecstatic. Similarly, back in California the last day of Gabe’s speech therapy with Speech Department Head, Linda, was when Gabe’s “whisper” voice awakened. And how sweet was it that the winner of the Tony Maietta Bike Raffle the proceeds of which brought Gabe to Boston had the winning ticket purchased for him as a gift. Then he generously gave the bike to his wonderful girlfriend who had a dream “homeward bound” theme tattoo painted on the frame. Thursday Tony, Jarret, and Brie joined together in Gabe’s hospital room while Tony affixed the powder blue handle bar tape, adjusted the fixed gear and attached the bike chain. It was the most beautiful bicycle I had ever seen. May its new owner ride it safely and have great times on it. The gift of having Gabe see the final assembly was priceless.

On Friday Kierie and I had to show the PT and OT staff that we could safely do “stand and pivots” with Gabe in order to transfer Gabe without Spaulding help. One of us in front and one behind we position our bodies to help Gabe sit up, then he leans forward, together we rock three times to gain momentum, Gabe rises on his legs, and we pivot him and lower him to the new surface. The first time in occupational therapy (OT), I failed, Kierie failed and even the therapist who supervised failed to get him more than 5 inches off his seat. Gabe was the proverbial 175 pound sack of Maine potatoes. Later in the physical therapy (PT) gym we were asked to try again this time to get Gabe to stand all the way erect. This therapist got him to stand for 5 seconds. I agreed to try and Gabe amazingly stood for 15 seconds. Then Kierie tried. Love conquers all and Gabe stood his tall 6’5” for a full half minute. The potatoes were gone and we had a new confident Gabe who later was heard to whisper “It’s all in the mind…”

So interesting things happen every day. We are tested. We meet and encourage critically injured patients and their relatives who are on our same path. We receive encouragement from our relatives and friends from near and far. Gabe himself never gives up.

Join us after April 5th for Chapter III in Crotched Mountain Rehab in Greenfield, New Hampshire. One more month of final strengthening and Gabe, Kierie and I will be ready to travel home where the Alternate Universe will continue to challenge and spread its gifts.

Back in December, I visited my family for two weeks, and returned to find an altered Gabe. From the moment I walked in, I immediately saw an improvement in his continuous alert level. He had a heightened awareness of multiple forces in the room, of the several stimulating factors present. His lips moved quickly, and in the next week he let loose his thoughts and questions, mentioning emotions like discouragement, frustration, hopefulness, elation. It was very hard understanding what he said, all of it inaudible whispers turned to white noise. Picked apart and dissected by an amalgam of lips, hands, yes & no questions, and the alphabet board.

Less than two months later and as March approaches, Gabe has experienced an even greater return to himself. The man written about in the fall has been replaced by an astute and complex-minded individual, one that is using whispered speech and communicating higher forms of thought processing. Emotions are multi-faceted and articulated with a verbosity I dare say is larger than it was pre-accident! And his sense of humor is back with a vengeance! In the last three weeks, he sparks in-depth conversations about his accident, as well as his feelings regarding his current state and injury, his past relationships. He is very aware that he has a “brain..problem.” His self-awareness is mounting at warp speed, and he’s eager to recover at a faster rate and return to a life before this. It’s extremely important for us the family to emphasize that the brain recovers like a muscle or a bone, but it takes longer than 6-8 weeks.

So as this cognitive revolution takes place, his stint at Spaulding Rehabilitation Hospital focuses on physical challenges: to eat, to talk, to sit, to stand and walk. Each therapy practices the same exercises day-in and day-out, in effort to concert his muscle groups with his healing brain and produce a greater response than he had the day before. He’s allowed eight ounces of pureed food a day as the Speech Pathologist works to make his swallow quicker and stronger, but surely the driving force is the pancakes he envisions and mentions twice daily. Donna may have a more accurate count on the number of times they’re requested each day. The trach was removed on February 5th, which immediately brought a louder volume to his words. Though only a whisper, one can clearly detect questions, statements, affirmations, complaints, emotions, and his sense of humor. He is actually speaking. No more yes/no with the fingers. The Speech Pathologist emphasizes breath control in her sessions, to “clap” his vocal chords together for actual voice. He has so much to say and wants to do it at a regular pace, but the lack of speaking since August 13 did not forebode well with his breath control. His words spill out on inhale and our mantra, “”speak one word per breath, on the exhale,” slowly but gradually translates to a syncopated whispered speech. He’s naturally beginning to follow this rule and is forced to pronounce each word exceptionally clearly. His pace is slow, but a complete stranger can understand if s/he only has the patience to listen…to…each…word. As he gets control of his breath and retrains himself to speak on exhale, his speech won’t have to be force-delayed. His volume is at a loud whisper level since the trach is out, and he can now daily get a few words out with actual voice. As of a week ago, Summer could actually hear her brother on the phone as he said, “Hello” and “Sugarloaf.”

Physical and Occupational Therapies are completely devoted to sitting, standing, and walking. Speaking very frankly, these will be some of his biggest challenges the entire way along because they are foundational to doing just about everything else by one’s self: getting dressed, tying shoes, opening the fridge, driving a car…..there are these basic activities we don’t think twice about, much less about the specific muscle groups: “My anterior satorius assists lateral rotation of the hip when I…” So while Gabe is rebuilding atrophied muscles and sifting for his equilibrium, he is also fighting for his left side to gain strength and perception. This left side is a critical part of the whole enterprise, and we are realizing that more than rehab is going to bring it back: rest, healing. His brain injury is very specific to his thalamus. This may have been described before in a prior post, that it is kind of like air traffic control within the body: it’s receiving a lot of sensory messages from external stimuli as well as internal meshed with thoughts, and relaying it all every which way to the limbs, organs, etc. His diffuse axonal injury means the thalamus’s neural axons were stretched or broken during the crash, and have to rebuild or find new routes to get air traffic control organized again. In all of this, the left side of his body has been severely affected. The best kind of rehab to treat the thalamus is taking it easy and taking notes on his fatigue level. There are exercises Donna and I help him do bedside and in the wheelchair that work to create muscle tone and assist in keeping him limber. But there are positives, and his left side is not completely silent:

His left arm began moving from the shoulder back in early December, and by the first week in January, he was able to lift his forearm from the elbow up onto his arm rest. In the last 2-3 weeks he began lifting his thumb. Now he can easily, albeit slowly, open and close his fingers in unison. His left arm is loose enough now that the the rehab team has told us his spasticity has reduced from moderate to mild to nearly non-existent. Donna invented a great new game with colored straws and a visiting friend from NYC, Niels, challenged his left hand to a thumb war. Now the left leg is what we look toward, and he is getting reflexive movement, seen when he’s walking in the LiteGait and swinging that left leg forward (he walked 78 feet on Friday, his longest distance yet). While watching Nascar from bed on Valentine’s Day, he lifted his left knee without any movement from his hips nor right leg to reposition himself. He can feel a tickle, touch, pressure, and pain on his left side, it’s just the message telling it all to move that’s partially blocked. But he’s talking about riding a bicycle again so you know he’s envisioning a future with the entire package working at full tilt again!

In light of this, in the last three weeks, we think his future outside the hospital setting looks like the brighter alternative. There are routines to establish that won’t involve waking up to other patients’ shouts in the early morning, nor nurses or therapists stopping in “just to check.” There are daily showers to be reveled under, familiar walls of a childhood home to be contained within, and a bike stand to be set up in the garage for our eight bicycles. There are the daily things like eating at a real table and trying to take up cooking again. At this point, these are the “therapies” that are going to give him practice at rebuilding his body, sans the depressive and sterile environment of a hospital.

Now, back to the eight bicycles.

“Can he really do anything with a bicycle?” you ask. A couple Mondays ago, we wheeled down to the rear lobby and I brought my bike in so he could double-check my mechanical skill. He checked my couplers, the headset, tires, brake. He pulled the brake lever and said, “This..is..too..loose,” then proceeded to tighten the barrel adjuster at the lever. I didn’t notice it was loose until he said, “Now..it..is..good,” and I realized it he had really just fixed it for me. Though riding a typical two-wheel bike is not a prediction for Gabe’s immediate future, certainly bike mechanics and possibly riding an adaptive model is.

Aside from acquiring a bike stand, Gabe needs an iPad. The day after Apple announced this upcoming product, he said he wanted one, to which I devised a way to fit into his recovery: this is going to be a useful tool for him to monitor his daily activities and link to the outside world. He lacks finger dexterity to type on a smart phone, but the iPad can provide the same options for applications in a larger, tablet format: with an event calendar, he can add what he did each day (each hour if he really wanted); an alarm clock can tell him when he needs to take his meds so he doesn’t feel so reliant on (or nagged by!) us. The fact that it can’t multi-task is actually pretty attractive. IF ANYONE HAS ANY CONTACTS OR TIPS ON ACQUIRING AN IPAD FOR FREE OR AT DISCOUNT IN THE NAME OF AN INJURED INDIVIDUAL, PLEASE CONTACT US. I imagine Apple may be semi-interested in seeing what their products can do for the disabled. FYI, yesterday he wrote his first text message since the accident. To his dad.

The iPad will be very directed toward his short-term memory, and a good portable picture album will assist with the long-term. He is very conscientious of his memory up to this point–specifically about the 12-24 months leading up the accident. This time period is in flux, as if there isn’t a continuum in which to mark the moments that float into his mind. Faces and events are the most troublesome, while he has more ease at recalling where he lived, worked, and some of his hang-outs. How I figure into his life is a very interesting variation from the actual truth, yet there are instances he recalls seamlessly. It’s important for us to not ask, “Do you remember, do you remember..” as much as it is for us to emphasize what he does recall when he recalls it (more than he gives himself credit for!). Our goal is just to alleviate his anxiety and remind him that where he is now is just a snapshot in time, not a fixed point in the rest of his life. His memory will be stronger as his brain grows stronger.

Speaking of memory, if you want to make a positive impact, SEND YOUR PHOTOS! If you have an interesting crop of images with him in it or an event he was at–be it one or a full album–send it and a story to BringGabeBackEast@gmail.com. He’ll check it himself. His bike crew in NYC has done a fantastic job of sending him pictures and he’s enjoyed it immensely. The biggest impression is looking at pictures, in which he’ll identify a face, a name, and make an association.

This post is already really long, so this week I’ll post an entry only with stories and conversational tidbits, to give you an idea of how strong Gabe is.

Much love, – Kierie.

Looking at childhood snapshots with dad, Mike. / Working on the computer with mom, Donna.

Laughing with close friends, Adam and Allison. / Posing with Dan (right), Ian (left), and Ian’s handbuilt Icarus bicycle.

Summ & show off some fine Allen genes. / Gabe holds a potato my heart.

Gabe’s life was saved at San Francisco General. Those of you who visited at SFGH are in the very brave category of hospital visitor friends. You saw him with tubes, lines, IVs, and comatose. The most you could do was hold his hand and wonder with us “Will Gabe ever wake up?” Often you choked back the tears. Sometimes you cried with us. Except for some subtle eye opening and right hand movement he was “sleeping” 24/7.

Finally came the day when he reached for Inge’s valentine and put it on his lap. We cheered! We knew he would wake up and he did. The teary visits came to a stop.

Then Gabe moved to Kentfield Specialty and Rehabilitation hospital north of the Golden Gate bridge. Slowly, over the course of September through December he gained strength. He was levered into standing positions and touched the ceiling. He was transferred into a wheelchair and started to learn to move it with his strong right arm and hand. Outside he ran his hand over Kierie’s bike agreeing about various adjustments and proposed changes. Kierie and I were taught to sit him up in bed so that he could have extra time to work on balancing himself in sitting position. Gabe has a strong right side but a non working left side (as of now) so is still not “rolling” on his side or sitting himself up. Once sitting up he can balance in position with little or no propping. In Speech Therapy he learned to indicate “yes” and “no”, showed us he can read (but may have some double vision problems), pointed out letters on a letter board to form sentences, and with guidance started to write legible letters. In late December he started initiating conversations by questioning his medications and wanting to know where we were all going next.

Friends came and talked to him at bedside, outside in his wheel chair or when he was in the lobby or occupational therapy room. He would answer “yes” or “no” to their many questions. “Do you remember the _____ race? And the time we _______? And you were so happy that we ______? Visitors experienced the subtle smile of the “new” Gabe, his emphatic thumbs up, rapid “yes/no” finger answers and a lively set of raised eyebrows at a remembered outrageous memory. Toward the end they also saw him quietly “mouthing” his answers. He could whisper a mile a minute and so quietly we would still have to guess at his answer and fall back on the communication of one finger meaning “yes” and two fingers meaning “no”. The visitors who were patient, clever, and good at twenty questions could say when they left, “Our old Gabe is in there but this recovery thing sure isn’t like in the movies”.

Now Gabe is at Spaulding Rehab in Boston. The very day he arrived he was coming down with a potentially deadly drug reaction to a past medication. He was moved swiftly to Massachusetts General Hospital where he immediately stabilized and the rash concentrated on his mouth and soles of his feet leaving both blistered and sore. He was down for the count. Lethargic, feverish, lips and mouth sore as hell but still raising those vigorous answer fingers. Nicola, Allison, Tim, and Tyler who visited then were brave “hospital” visitors, quietly sitting at his bedside distracting him with “Do you remember when we _____? stories. He loved it and it helped him know this too would pass.

Now he is back at Spaulding Rehabilitation Hospital. Regaining his strength to the point of when we left California. Brain injury recovery is similar to bike racing in that both require tons of energy and leave Gabe exhausted. Therapy sessions are interspaced with power naps. He is the new kid on the block and is still being evaluated as to what he can do. Today Kierie and I should get approval to do bed sitting exercises. Respiratory therapy has him on the fast track to remove the trach and speaking valve that he breathes and speaks through. Fingers crossed that should be totally gone by Valentine’s Day. At that point he will be in training to get that whisper up to speaking volume. Then we will all know what he has been eager to tell us for the past month.

So potential and past visitor. If you are a friend who wants him to achieve his maximum recovery you must come. Now that he is East, Gabe needs support from his friends and relations. He is expecting you to come and see him. He needs to see with his own eyes his bigger community of friends is still there. Scienific research and our own personal research shows us that the patients who had the most caring and sensitive visitors improve the most. No pill replaces a visit and a hearty handshake and a look into those searching brown eyes. Also, Kierie and I need the boost that your visits bring.

Plan on coming a number of times. The first time come to assess the situation. See where Gabe is at. He will remember you and most of your shared memories. He will be alert or tired or power napping when you arrive and you take your chances on that. He should not be over stimulated and renting out a Fung Wah bus and a big welcome back east party group is not a good plan for now. Weekends are best, afternoon and evenings. On week days come in the evening because of therapy and power naps in the day time.

Then, if you want to keep up the support and friendship, come back for a second visit in about a month (or less) and see for yourself the rate of change Gabe will undergo at Spaulding. Kierie and I are close to the action and each new muscle that reawakes we immediately are on top of. But for you it will take a little passage of time to be able to say “Awesome, Gabe you are so much more able to ___ since I saw you last”.

Then, while we are still in Boston, make a third or more visits just to relax and enjoy yourselves ’cause in a month or two he will be communicating more easily and will have more abilities to show off. Finally, plan a fourth and subsequent visits to Gabe’s family farm in Winterport, Maine when he is through all his hospital and most of his outpatient rehab. For those of you from away, the Allens have plenty of bedroom space and Gabe will be relearning his partying skills. I am thinking drop-in pot luck dinners on Saturday nights would be a nice event for local Mainiacs. Gabe will be making the dessert. Moxie cupcakes it is!

Suggestion: Call Donna or Kierie before you come to see how many others are planning the same visiting date.

Directions:
Main Hospital Campus – 125 Nashua Street, Boston
Visiting hours are Monday-Friday, 1 pm. to 8 pm, and Saturdays, Sundays, and holidays, 11 am to 8 pm. A maximum of four persons may visit at a time but 1 or 2 is better for Gabe.

Go to this link for directions. http://www.spauldingrehab.org/ourlocations/maincampus/directions

Those of you coming on the T, the closest stop is Science Park using the Green line. You must be on a Green Line T train that says “Lechemere” on the front for the train to actually go to and stop at Science Park. Then when you get off you can see the Spaulding building down river.

So where is Gabe Allen? Last we told you he was to fly East on January 12th, and so he did!
Is he in Spaulding Rehabilitation Hospital in Boston undergoing vigorous rehab? No, he is not!

Gabe is camping out in room 834 of Massachusetts General Hospital in Boston recovering from a drug reaction rash. In the Alternate Universe on the Ride to Recovery you can never quite be sure where you will be one day to the next. So let me tell you what happened….

In December came the great news that Mike’s prime resource for footwear at Winterport Boot Shop, the Red Wing Shoe Company, would provide their corporate jet — a snazzy Citation V, and two pilots, Chap and Jim–to fly Gabe east as a gift to the family. This was a fantastic gift saving many thousands of dollars. What remained was to have Kentfield Drs. release Gabe, Spaulding Drs. receive Gabe and Insurance approve. This was all completed by January 6th and we contacted the Flying Nurses International to organize the medical essentials of the trip. Dana of the Flying Nurses arranged for sending and receiving ambulances; in flight ICU nurse Allen; all necessary health equipment; and a car service to transport all the baggage to and from the hospitals. The Maietta Bike raffle proceeds really would be able to pay for the medical end of the trip.

Early in the morning of January 12th, so early that Kierie and I really didn’t go to sleep the night before, nurse Allen arrived to prepare Gabe for the flight. He dressed him in warm clothes and prepped the St Joseph Ambulance team. The night shift nurses and CNAs on the first wing all came to say goodbye, wish us well, and some cried a few tears. The Limo service arrived and packed in our luggage. It was a good thing that the Limo also packed a huge black umbrella because we sure needed it at 4:00 in the morning when we got to Kieser Air at Oakland Metropolitan International Airport. Dark, cold and pouring rain was our sendoff from California. The umbrella covered most of the sideways drifting rain while the ambulance and jet crews planned how to get Gabe through the jet door that was narrower than his shoulders.

Into the narrow jet he went and into the comfy reclining seat. Kierie and Allen on the port side stowing the final medical supplies, Gabe and I on starboard and pilot Chap and navigator Jim reading off the final preflight checklist. We took off like a spirited race car at the drop of the flag and headed for Fargo, North Dakota our midway fuel stop. Gabe had a bit of sedation to help keep him calm so we thought nothing of his laid back observation of the trip unfolding around him. Allen was kept busy with monitoring Gabe –heart rate, oxygen level, suctioning the trach and giving meds. Kierie kept Gabe entertained and comfy with blankets and pillows. I mostly took pictures and enjoyed the catered Danish breakfast and sandwich and salad lunch that came aboard in Fargo. Chap swapped flying duties with Jim at Fargo and often passed back the Flight GPS mini-screen to let us see what state we were over. When we reached the Hudson and Chap announced that Manhattan was just at the point where the river disappeared on the horizon Gabe looked wistfully off into the distance.

We landed in the private aviation section of Hanscom Field in Bedford, Mass. by 3:00 in the afternoon, well ahead of schedule. PrideStar ambulance was ready to receive us. This time we knew exactly how to extract Gabe and get him onto the waiting stretcher. It was good bye to Chap and Jim who planned to make it back to Red Wing, Minnesota by supper. Allen came along to hand Gabe off to his counterpart nurse at Spaulding. All went smoothly and we were soon getting Gabe into his private room overlooking the beautiful  suspension bridge in Boston. We unpacked the bags, met the nurses and had a quick meeting with some of the staff. Gabe was safe in Boston and it was time to find Tim Swan, our host in Somerville just 5 miles away.

Our new place is sweet, a third floor condo that Tim owns in an older renovated house. We have the penthouse bed and bath on the fourth floor. We had time to meet Tim and his girlfriend Ann, enjoy some tasty chicken pie then we dropped into bed totally exhausted.

Early the next morning Tim drove us in to be with Gabe. We experienced Spaulding PT, OT and ST in action as they evaluated him throughout the morning. At 10:30AM we were happily surprised when the Respiratory Dept. chief no sooner announced that Gabe could have his trach downsized to a 7 than it was done — before our very eyes. Gabe’s chapped lips and a few red dots on his cheeks raised no alarms. He was very sleepy during his evaluations and we thought he was still on west coast time. At noon a few more dots showed up on his hand and palms and it was time to alert the nurse. By 5:00PM when we took off his foot braces and found a severe rash on the soles of both feet it was time to call the Dr..  That started a chain of events that began with us in an ambulance on a ride to Mass General two miles away.

This was followed by a 17 hour wait in an emergency room cubby for a room in this hospital that by law cannot turn away any ambulance. Except for the suspense of the spreading rash we were as comfy as could be when they brought in a hospital bed for Gabe and a gurney bed for me. Kierie went ”home” to rest up to replace me on the day shift. She supervised his arrival to a real room in the White Wing at 2:00PM the next day

So that is where we are, in a fantastic hospital with great nurses and teams of Drs.. Neurologists, opthomologists, dermatologists, a physiatrist and teams of internists have decided on a clinical diagnosis of drug reaction rash to a drug he was previously on in California. A diagnosis that ranges in severity from mild to deadly, Gabe has the mild variety where only 5% of his body is affected. His lips, mouth and soles of his feet being most affected but already improving. Despite his lips resembling the loser’s in a 12 round boxing championship he is still trying to talk and is gamely doing his bedside situps.

So the flight took place, we are ecstatic that we are on the East Coast, and we can hardly wait to get back to Spaulding where they are holding him a bed. As this is the Alternate Universe you can bet it will have a beautiful view of the Charles River.

Call first before you visit to make sure Gabe can receive visitors and to find out where we are. If you want to send letters our official address for the next month or so will be 30 Victoria Street #3, Somerville MA 02144.

It was also wonderful to see him able to eat pureed foods, such as yogurt and mashed sweet potatoes. For New Year’s Day I made him applesauce. It is weird and exciting to feed your 27-year-old brother, but I loved it, and especially when he wanted to feed himself. The eating and swallowing of such foods is a very important development, since it leads to improvements in trach weaning as well as speaking. I truly saw improvement in his swallowing just while I was visiting, which was very cool.

Throughout the week, I told Gabe about things back home, and he seemed very interested. Sometimes I joked with him and received his funny half-smile (his left side is still slowly coming along so the smile is mostly on his right). His eyes were wide and alert as he “talked” to Kierie (who was visiting family for the holidays) and our mutual friend Allison on the phone (she did the talking, though he was moving his mouth in response often). I sat with him and encouraged him as he worked with his therapists, and helped with all the bedside things that need to be done. It’s quite a workout and very emotionally demanding as well. But when the effort is rewarded with a hug, a high-five, or a garbled but definitive “I love you,” it is so amazing!

I didn’t get many pictures except a few from my mom’s camera phone. I’m in the process of getting those in a format that is actually usable, so perhaps I will post some later.

Happy New Year to all the Gabe friends, family, and fans!

xoxo