The good news is that this is my last post. I say good news because it means Taylor is moving along so well that a site dedicated to her recovery seems out of place. Kit and Taylor may still make a post every now and then, but this is MY last post. Indeed, the biggest challenge now for her, and everyone else, is to move past what I call “Brain Injury Taylor” and back to just plain “Taylor.” For sure, she has a long way to go. She works very, very hard to relearn her ADLs (Activities of Daily Living), but she will definitely get there; it is just a matter of perseverance.
Of course, it is not easy, and I don’t want to diminish the hard work Taylor is still doing. To relearn how to put on a T-shirt, Taylor worked every day for about 30 minutes for three months. Struggling for thirty minutes only to have it end in total frustration again and again every day for three months. But at the end, she got it, and every day she learns a little bit more, gets a little bit faster, and sees a little better on her way back to a total recovery.
Total recovery seems inevitable now, but that was not always the case. For sure, there were some dark days that made this idea seem ludicrous. When we first went to Craig Hospital, they assembled a team and had a meeting with us and asked what we were expecting. I wasn’t prepared to answer this question and just blurted out “Total Recovery.” They were all too professional to roll their eyes, but I’m sure they were thinking this idea was a little nuts. Then there was the time at MGH in Boston where one of Taylor’s friends was in the room, Taylor was unconscious and had been for several weeks, and I was saying to her, as I often did, that she was going to come “all the way back.” This made the friend sad. Like all of Taylor’s classmates, he was too smart and logical to buy into such a fantasy. Nowadays, this idea gels more with logic, and it’s a lot easier to hold this view, but I always knew it would happen.
Taylor has been making great progress. Each day she pushes herself a bit more to get better at each little task. Sometimes I want to help her so much. It would be so easy to just adjust this or that so she can pick it up, or close it, or button it, or whatever the case may be, but she usually refuses my help so she can learn the task through struggling.
Taylor has been climbing stairs for a while but her skills are always getting better. She has progressed from one step with the same foot to one step with alternating feet to two steps with one foot to what you see here which is alternating feet taking two steps. This was a few weeks ago, nowadays she is taking steps without a hand rail.
Here she is climbing up the stairs:
This is an update on Taylor’s current condition to let everyone know how she is doing in a technical sense.
In all things Taylor continues to improve. Her determination, perseverance, and good attitude continue to inspire and amaze me.
Taylor is back to her old self mentally. So much so that it feels inappropriate for me to comment on it. She can do this for herself at some future time.
What is perplexing about Taylor is that her memory of all kinds of facts and ideas are intact but her memory of motor skills seems completely lost. In each task she tackles she has to break down the task and examine exactly how to do it given her current abilities. Because most of our everyday simple tasks are actually highly coordinated movements involving momentum and precise timing she has to come up with simpler ways to get them done. For instance when opening a heavy self closing door she grabs the handle with her right hand and walks backward to open the door wide, then she puts her left hand behind the door, then she puts her right hand behind the door, then she moves her body around to the back side of the door, finally she backs into the doorway. Each of these steps she can do one motion at a time which minimizes the need for coordinated movement. Over time she will develop more sophisticated methods of opening the door as in each of these carefully thought out tasks she constantly improves and improvises.
As I pick her up each day from therapy she methodically goes about each task in her routine. Some she is still learning, like zipping and unzipping her backpack, others she is refining like opening a car door and sitting in the car. Each is a process and a therapy in itself. As she continues to improve it is easy to imagine her completing her goal of returning to school in fall 2015.
Physically her left arm is not as coordinated as her right and she relies on her right arm a great deal. To a lesser degree her left leg is not as agile as her right. When walking it is challenging for her to relax her left arm and let it swing.
Taylor’s vision is improving, but is still her greatest challenge to a full recovery. She got some new glasses with prisms designed to open up her tunnel vision but they did not help as much as we had hoped. They did make objects appear sharper which is a big help in correcting the mechanical half of the challenge. The other half of the challenge is her ability to mentally recognize what she sees. The other day I sat in on an occupational therapy session where Taylor was locating letters randomly placed on a wall. Each letter was about 4 inches tall and she was unable to see all the features of any one letter. Like a detective she explained how she identified each feature and how that allowed her to deduce which letter she was looking at. For instance the presence of a curve rules out letters with only straight lines like E and A, the presence of straight lines and curves could mean letters like D and B. Using these methods, along with the knowledge of the location of other letters she found and the process of elimination, she was able to find all the letters but took longer than a normally sighted person would. Like with motor skills Taylor has to break down the task of visually identifying an object into more thought out rudimentary steps. Perhaps the two are linked? Like her motor skills her vision improves everyday and she is building her methods of discerning the visual information she needs to get her tasks done.
Attitude and Motivation
Taylor continues to be praised by her therapists for being a hard worker, highly motivated, serious and thoughtful as she goes about her therapy sessions. She has a great attitude and is usually joking about everything when we are together.
Today was Taylor’s first day of therapy at the “Center for Neuro Skills”-CNS in Encino. It is a switch from the coaching/home therapy we were doing to an intense 6 hour a day, 5 days a week skilled care program. Her first day was not so tough, as Taylor has been working hard at home and was prepared to handle the workload. Her new therapist team seems great. Taylor chose to switch to this program herself to speed up her recovery.
Leaving Rancho Los Amigos was sad, as everyone there has been wonderful to us, and the therapists are top notch. On our last day (yesterday), Taylor did a lot of follow-up testing and evaluations, which showed remarkable improvement on almost every measure. We will miss the staff at Rancho greatly. Here is a picture of Taylor and two visiting friends from MIT, Kyra and Justine -when they were here back in July, at Rancho with the Rancho Chief Medical Officer Dr. Mindy Aisen, who is an MIT alum herself.
Taylor has funny fans. The neighbor of her (Dad’s) house in Venice is stand up comedian Lachlan Patterson. He has been doing stand up for years but recently made it to second place on the NBC show “Last Comic Standing.” He recorded a message for Taylor on YouTube. Check it out here: http://youtu.be/WGxpBfPgnv0
Of course, Taylor is also a big fan of Lach, and we have been watching his sets on the show week after week. It has been fun to see him progress in the show while Taylor has been progressing in her recovery.
In addition to Lach, one of Taylor’s biggest fans on this site, Mimi McCaffrey, is also a stand up comedian. It is great that Taylor has such talented supporters!
Today Taylor was in a “Fashion Show” at her rehabilitation facility. The show included many patients and gave a chance for each to walk the runway all dressed up and to music they picked out. It was a lot of fun and I think Taylor enjoyed it. Here she is getting hair and makeup done before the show:
As luck would have it my camera didn’t work just as Taylor walked on stage. I did manage to get a picture of her just as she started to walk off stage. She looked so cute in her outfit:
Taylor’s vision continues to be perplexing. She can only get so far with two inch letters as several weeks of trying to get her to recognize them never got to 100%. She was always mixing up similar letters like “E” and “F” or “Q” and “O”. After switching to 12 point letters on plain white cards she was able to get to 100% recognition on the first try. She said it was because she could see the whole letter when they were smaller. Words can also be recognized when letters are placed on the table in front of her. The fascinating thing is the letters can’t be too close together. We did an experiment with 12 point letters on a computer screen. I typed a “T” and she recognized it. Then a few spaces over I typed an “O” (to spell “to”) and she said she could see the “O” but that the “T” disappeared. When I deleted the “O” she said the “T” reappeared. If I spaced the letters two inches apart she could see both but it seemed like she was looking in two different places for each letter. As if she could not see both letters in the same view. We are having fun trying to figure this out.
Taylor loves to get calls and or visits from friends. In the last few weeks she has had several long calls with friends she knew in Boston or Los Angeles. These interactions mean a lot to Taylor she appreciates it so much.
Taylor is starting to really change quickly these days. Around the house, she started to walk with the walker, then to and from the car, then everywhere. At therapy on Monday, it was decided that her walker just gets in the way since her legs are more coordinated than her arms, so we got rid of the walker and now just hold her hand as she walks. Yesterday, she met her friend Scarlet at a shoe store to buy a pair of slip on shoes (checkered Vans because they are easy to see.) We left the house with no wheelchair or walker and just walked around shopping and eating ice cream without all of the equipment (except Dad). Today, she said she had sore hips and shins, so we used the wheelchair a bit to give her legs a rest, but for sure her wheelchair days are numbered.
Her vision is getting better and she is learning to do more with it. We got her a set of alphabet flashcards. On the first go, she couldn’t recognize a single letter. After a week of going through the cards once or twice a day, she can now recognize 21 of 26 letters. Some of her techniques are fascinating. She can recognize “Z” and “N” because they are the only letters with pronounced diagonal lines. When shown a letter “S” she guessed “O”. I asked how she could confuse “S” for an “O” and she said she just sees a curve. It is really hard to understand what she “sees” and she can’t describe it when asked.
Her hands are becoming more coordinated as well. Today, she showed me that she could connect her thumb with each of her fingers on her right hand. This has been something we have been practicing from way back when she first gained consciousness and couldn’t control her hands at all. Her left arm is also starting to get used more as her implanted defibrillator (ICD) wound is now mostly healed, and she is less guarded about using that arm.
Similarly, her cognition is improving as well. When not working on physical exercises, we work on thinking exercises, such as naming items in a category or unscrambling jumbled sentences. Her performance in these tasks gets steadily better. I know this is happening because it is getting harder to make her laugh at my jokes. When she gets to the point of never cracking a smile, I will know she is totally recovered.
On Monday Taylor and I started her home care. It was a great day except that she fell over twice, missed lunch, missed seeing her friends, and was late for her first therapy appointment. Taylor was unhurt in the falls and a good sport while we adapted to the new routines. On the positive side we got rid of the wheelchair on the trip to her therapy sessions as she used the walker all day to go between class and to go to and from the car. We figured out that it works best if I do the steering while she does the walking. We also got some flash cards from a teacher supply store to help in relearning how to recognize letters.
On day two we made it to a restaurant for lunch to see a few friends (Emily and Danielle). We went to Sushi Stop which is a favorite of Taylor and her friends because it is hip, good, and most of all cheap. Afterward Taylor said “never again” since it is also really small and not at all accommodating for handicap access. We also did upper body stretching and exercises, voice exercises, and flash cards. Her voice exercises include trying to say a loud “ahhhhhh” for as long as possible to increase voice strength. Taylor is trying to reliably hit ten seconds.
On day Three we did floor exercises, voice exercises and flashcards in the morning. We then used the wheelchair to go to the Los Angeles County Museum of Art (LACMA). When we got there we got lunch at a food truck and found the museum closed! We visited the La Brea Tar Pits park and got a cold drink at a near by Starbucks. It was fun but also hot. Afterward we stopped by our friend Dalia’s Salon (Hairteam on Fairfax.) We were planning to just drop by and say hi but Dalia, Pia and Lily insisted on doing all kinds of work, free of charge, on Taylor which was needed since she has not been to a salon since January. They washed, conditioned and cut her hair, then did some work on her eye brows. Taylor came out looking fantastic. As a guy, one of the things I am learning about is how tough it is for women to take care of their looks. It is kind of a tragedy that Taylor has to rely on me to help with this, so it was wonderful for her to get real help in this department. Dalia, Pia, and Lily did a great job!
Back in Boston we got a big favor that has never been acknowledged. We were in the Cardiac Intensive Care Unit (ICU) and were about to be transferred to a general purpose floor for continued recovery. This was bad news to us because we had been telling the staff for the last two weeks that we need to be in the Neurology department because Taylor’s challenges at that time were all about her neurology. The excuse we kept hearing was that there was no room in Neurology. This was frustrating because when we asked questions we were told that “this is a neurology question” and that as members of the cardiac team they couldn’t help us. The idea of being transferred to a general purpose floor was worrying us.
Around this time Dr. Robert Langer, James Dahlman, and a few members of Taylor’s lab came to visit. “Bob” Langer is the Principal Investigator (PI) of Taylor’s lab and James is her lab supervisor. They asked if there was anything they could do to help and I mentioned the situation about getting to the neurology floor and that we were frustrated. They mentioned that they would try to see what they could do and left. About 20 minutes later, The nurse came in and told us we would be moving to the neurology floor. Later I got a call from James who asked me if we got transferred to the neurology floor.
Unlike all the super smart people at MIT, I am a bit slow on the uptake, it happened so soon after they left that I didn’t immediately make the connection. Though we will never know for sure, looking back now I am pretty sure Bob, who is a giant in academic research, intervened on Taylor’s behalf and contacted who he could to help Taylor get the care she needed. Time after time we have seen how the MIT community looks after their own. We are grateful to count them among the many angels, near and far, who have helped smooth the road to Taylor’s recovery. Thank you Bob and James.