I know it has been a while since we’ve posted, but we’ve been busy! Taylor continues to attend classes through Santa Monica Community College (SMCC) 3 days a week and attends rehab at the Centre for Neuro Skills (CNS) 2 days a week. She is currently working on her re-application packet to MIT. In preparation for returning to MIT, she is taking an assistive technology class at SMCC where she is learning to use programs like Dragon Dictate and Kurzweil. Dragon Dictate is a dictation program, which captures her spoken words and translates them to written text on the computer. Kurzweil is a text-to-speech program that will read aloud text that is on her computer (from websites, word documents, etc.). These 2 programs help her with the biggest challenges that she still faces since her injury: fine motor skills and sight. At CNS, she continues to get physical, occupational, and cognitive therapy. She is also beginning to feel more comfortable doing things on her own, such as going to the local coffee and sandwich shop by herself. Another change is that she cut her hair short, which is much easier to manage on her own.
Today, Taylor and I took a CPR class. Taylor felt that it was very important for her (and everyone else) to learn CPR because no one performed CPR on her when she had the cardiac arrest. The instructor was especially moved that Taylor was there. She (the instructor, an EMT) said that she has only known one other person who had survived a cardiac arrest. So, learn CPR if you don’t know it. You could save a life!
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.
Hello, I know we have not been updating as often as we should, but Taylor’s recovery is not as dramatic as it was in the beginning, so there is less to report these days. That does not mean that she has stopped recovering, however. She continues to make little gains, which are usually not noticeable to those of us who see her everyday but is noticeable to those who only see her on a monthly basis. For example, we recently had an appointment with her EP cardiologist who saw Taylor about 6 months ago. He commented that her speaking had improved so much and he could see she was getting better. Also, her ICD is functioning well and her heart has not shown any issues, even with the running (walk/run 2X around a track about once per week) that she has started doing.
We also recently had an appointment with a neuro-ophthalmologist. He measured her field analysis, and it had improved 6 points compared to when it was checked last in October (3 months ago). He said that he expects it to continue to improve, especially because she is young. Although her eyesight has improved considerably since she first “woke up,” it is still not considered functional. The physical anatomy of her eyes are completely normal, it is that her brain cannot make sense of what she sees, and the doctor says that this takes time to repair.
Next month, Taylor will start classes through a special brain injury program offered at Santa Monica Community College. These classes will not likely be intellectually challenging for her (one is a counseling class, one is a technology adaptation class), but they will be good practice for going back to school (sitting in class, taking notes, etc.) When these classes begin on Feb. 17, Taylor will only be going to CNS 2 days a week. CNS has been great in helping Taylor get back to independence, but it will be good for Taylor to be back on a college campus in anticipation for returning to MIT.
As you may recall, when Taylor first returned to Los Angeles from Craig Hospital, she was still in a wheelchair. It actually is a BIG help to be able to park in one of those large handicap spots if you have to wheel a wheel chair next to the car to get your passenger in and out. Thus, we applied for a handicap placard when Taylor first returned home. I remember when we went to the DMV to get the handicap placard with Taylor. We had filled in the application to get the temporary placard. When she saw this, the woman behind the counter helping us said, “Are you sure you don’t want to get a permanent one?” “No!” we said. We definitely wanted the temporary one because we only wanted positive energy that Taylor was getting better. It struck us as strange that we, not a physician, could choose whether we wanted a temporary or permanent placard. Also, it cost $6 to get the temporary, whereas there was no cost to get the permanent placard (no wonder the system is abused). The first time we tried to use the placard at one of Taylor’s doctor’s appointments, all the handicap spots were taken, despite there being 2 long rows on 2 different floors of designated spots! We ended up parking in a regular spot, which happened to be barely large enough for me to move Taylor’s wheelchair between our car and the next car.
Well, yesterday, Christmas Eve, Taylor’s temporary handicap placard expired, and we are not renewing it. If you have been following our posts, you will know that Taylor has been walking for some time now. She is even getting into and out of cars by herself and can buckle her seatbelt by herself about 75% of the time. Good-bye handicap placard!
It’s hard to believe that it’s that time of year again. Last Christmas was the last time that we saw Taylor before her accident. I remember we climbed the Culver City stairs, which are a set of very long and tall steps going up a hill, and looked out over the hazy (smoggy?) city of Century City. Taylor had climbed the stairs before, but this was my first time, despite having lived in LA for over 10 years! Of course, she would not be able to climb all those stairs again this Christmas, but she will be able to again one day, as she continues to get stronger and build more balance. She has recently been working on climbing stairs with only one foot on one step at a time and without using the handrails. She has even climbed 4 flights of stairs in the parking garage to my car at work when the elevator was out. This was tiring for her, but she could do it, and little by little, she gets a little bit stronger.
We also have been making Holiday cookies, which is actually very good occupational therapy for her because she needs to use her fine motor skills to roll, cut, and decorate the cookies.
We wish everyone Happy Holidays, and thanks for keeping up with Taylor!
Hi Everybody! This is Taylor, and I’m dictating to my mom. I’ve had requests to author a post, so here it is. You may be aware that my 21st birthday was last weekend. It was bittersweet because I cannot drink due to the brain injury. Still, it was a good birthday. My family, Veronika from MIT, and I went to a sushi restaurant.
The food was yummy! I had no idea that Veronika was coming into town, so it was a happy surprise.
I don’t know what else to write, so you guys can ask me questions, and I will reply to them on this blog.
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:
Probably the 2 most challenging things for Taylor these days are her fine motor skills and her sight. Her fine motor skills are still developing but not yet back to the point where she can type or text. She has the new iPhone, which has accessibilities (voice-over) for sight impaired people and Siri to tell it commands, so that she can start to check her messages and make phone calls on her own. Her biggest frustration is dressing herself. She still requires moderate assistance to get dressed, and it is frustrating for her that she cannot do this herself. Of course, her imperfect sight contributes to her not being able to learn this faster. She cannot see exactly where the arm hole is in the t-shirt where her arms need to go or where the leg-hole is in her shorts where her leg needs to go, for example. With her sight, she can now read short sentences on flash cards. However, she cannot see the whole sentence at once, like you or I can. She has to read one word, remember it as she scans for the next word, and then eventually put the whole sentence together.
As I said, her motor skills are improving. Recently, she has been practicing her writing at CNS. I saw her write her name for the first time since her accident, and I was over joyed!
On another note, the paper that Taylor co-authored (May 21 post) has been published in hard copy. The paper made the cover of that journal’s issue. Taylor’s former graduate student mentor (James, now a PhD – congratulations James!) sent her a framed, author signed copy of the cover, which now hangs in her room.
There are days when the frustration leads to tears, but as a friend said to me, we should be worried if Taylor is not frustrated. That she is frustrated means she wants to improve; and that’s a good thing.
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.
Taylor has been attending CNS full-time for about 3 weeks now, and it’s going very well. She likes that she has days that are full, because she is still someone who likes to stay busy. Her original plan was to go back to MIT in January 2015, which would be just short of 1 year since her accident. However, she probably won’t be ready to go back by then because she and I are both discovering that neurological recovery is a very slow and long process. Although she continues to make improvements, she will most likely not be back to independent living by January of 2015. Her new plan is to go back in September 2015, probably part-time for 2 semesters, and then finish full-time for her last 2 years. This, she calculates, will put her 2 years behind her original class (2016). The amazing thing is, she came up with this plan all by herself. She understands her limitations in a very mature way, but is still driven to go back to school. We had our first family meeting at CNS last week, and all the therapists said that Taylor is the perfect patient. She is pleasant to be around, does everything they ask, and is completely motivated. Taylor still continues to amaze me with her upbeat attitude and determination, despite what she has been handed.