The Sixth-Month Mark (& an iPad)

Dear all,

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 The man written about in the fall has been replaced by an astute and complex-minded individual, one that is using whispered speech and communicating higher forms of thought processing.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.