Carolyn Schutte's Journal
Written Sep 24, 2013 10:03pm by Jim Schutte
Carolyn turned 59 last Thursday. Many thanks to those of you who sent her greetings. Gifts, of course, don't mean much to her now, but I fed her all the chocolates and pistachios she could eat, and that made her happy. But what made her REALLY happy was when I called her dad, Dayton Wallace, and put him on the speaker phone. You should have seen the way her face lit up when she heard his voice. Unfortunately, her mother had an accident recently and was in the hospital, so Carolyn couldn't hear her voice too.
Ever since I brought Carolyn back home from New Jersey, I had hoped to get her parents up to see her. Chase has volunteered repeatedly to go and bring them to stay with us as long as they wanted. They've agreed to come, but other events have kept them from setting a date, and now it's obviously not possible for them to travel until Carolyn's mom gets out of the hospital. However, I'm still hoping that we can get them here. It would be such an incredible boost to Carolyn's morale.
Which brings me to another subject. A lot of people ask me if it would be okay to come and visit Carolyn. My answer is that friends and family, without exception, are always welcome. All I ask is that you haven't recently been exposed to an infection like a cold or flu, and that you call ahead and give me time to make sure that she's dressed and ready to receive visitors. Also. be aware that Carolyn's reactions on seeing people she hasn't seen in some time can be unpredictable. As I've explained in the past, it is common for brain injury patients to have a disconnect between what they're actually feeling and their ability to express it. Not always--usually her reactions are clear and appropriate. But sometimes she'll yell as if frightened or angry when she's really trying to express delight. Yet with patience and a little gentle teasing ("Are you trying to sing to me, Carolyn?"), she'll usually start laughing and showing her true feelings. Then again, there are some days when she's "spaced out" and just not connecting at all. It's unpredictable, but she's getting more consistent in connecting with reality.
Last week, Chase and I got to take a break and go on a weeklong backpacking trip to Panama. The preparations were more than a little complicated because I had to arrange to be continuously accessible by phone, should anything go wrong with Carolyn. Verizon has service in Panama, but at a roaming fee of $3 per minute. Fortunately, there are WiFi apps that allow us to communicate for free, and almost everywhere in Panama has WiFi now.
I toyed with the idea of putting Carolyn in the nursing facility while I was gone, but decided against it. Every time I've put her in an institutional setting, we've gone from one infection to another, and she winds up back on tube feeding because no one wants to take the time to prepare her food so she can feed herself. So I arranged for 24-hour care with her usual caregivers and explained what was going on to her regular doctor so the caregivers could turn to him immediately if any problems developed. The arrangements for Carolyn's care cost a lot more than our vacation, but at least I had the comfort of knowing that she was safe and comfortable at home and being taken care of by people who genuinely know and love her.
As for Chase's and my trip, it was a blast, with lots of unusual events that only backpackers would appreciate--such as spending the night in a "hotel" that consisted of a bamboo elementary school classroom strung with hammocks on one of the Puna Indian reservation's archepeligo of tiny Caribbean island paradises. Backpacking is one of those things that you either "get" or you don't, and those of us who do get it never outgrow it. In every backpacker's hostel I visit, I encounter at least one person in my age group or older. My favorite was a 69-year-old grandmother taking her 19-year-old grandson on an around-the-world trip to acquaint him with the lifestyle. Chase has already posted a lot of photos of the trip to his Facebook page, and I'll be doing the same in short order. But enough about me--you're here to read about Carolyn.
Progress is coming slow right now. Just today, we were finally able to get her back in the standing frame. Even then, the ulcer on her foot from the people in Omaha misapplying her foot brace still hasn't healed entirely, and we're going to have to go slow so as not to make it worse. Carolyn seemed to do well--she laughed and smiled while upright, whereas she previously just showed irritation with us. But it's important for her circulation, bone density, and to strengthen her leg muscles. Whether she'll ever walk again we cannot know, but this is the only route that will give us a shot at it. And she is getting more consistent with her Yes/No responses.
Normally, I would go into a rant on some medically-related topic about now, and I have a good one in the making. But I'm running low on time and energy right now, so it will have to wait.
Written Sep 7, 2013 8:45pm by Jim SchutteI wish I had some interesting news, but I really don't. We're still pretty much on a slow course right now as she consolidates what she's learned to this point. Hopefully, she's about ready to make another hop forward. Occasionally, she'll say two or three words at once, but usually it's just No or Yes, or someone's name.
The biggest excitement was about a month ago, when the caregiver forgot to lock the bed rail in place before rolling Carolyn on her side. When Carolyn grabbed the rail, it collapsed and she fell to the floor. Fortunately, the caregiver was able to grab her and at least slow her fall. We took her to the ER to get her checked out, and she had some bruises but nothing broken or torn.
On the way back from the ER, we loaded her in her van and took her on a tour of downtown Excelsior. As mayor, she had worked so hard to get a city master plan in place, which included demolishing most of the buildings on Excelsior Street and replacing them with a new housing development, now completed. She was so happy and all smiles as she got to see the finished product for the first time. I would have taken her out for a walk, but it was too hot outside and she overheats very easily. But she was definitely pleased by the tour.
A couple of weeks later, the weather was unusually mild, so we took her to the BBQ contest downtown. She was so happy to see the people she knew, especially John McGovern, our police chief, who had been a friend of hers since she worked for the city back in the 1980s.
Right now, I'm looking for stem cell studies that might have the capability of repairing the damaged parts of her brain. Granted, new brain cells can't replace old memories, but there don't seem to be any problems with her memories. She clearly understands what is said and recognizes people. And she also takes great enjoyment in looking at the many photo albums she compiled of our travels abroad. It's the motor and speech skills that are problematic.
I've sent Carolyn's records in for one study, but I'll be surprised if we get accepted. Carolyn's case is highly unusual, and most studies are addressing very specific and common forms of injury. Also, most of the early studies haven't been very promising, so I'm not even sure I want her in a study just yet. What I do want is to start getting her data into the system so that, when a study is promising enough that the researchers start expanding their targeted patient base, we'll be at the front of the line.
Another concern I have is that, because there's so much money to be made from this kind of research, there are also hucksters out there exaggerating or even falsifying their results. Even studies conducted in university hospitals can't be trusted, given that influential professors are sometimes paid "consulting fees" of over a million dollars each to tout the benefits of a treatment at professional meetings. The financial conflicts of interest and even outright corruption involved in medical research these days is mind-numbing. In 2008, Sen. Chuck Grassley held Senate hearings on the connections between big pharmaceuticals manufacturers and supposedly "independent" medical researchers. Google "Grassley Senate Pharma Hearings" to learn more.
None of this is to say that all medical research is tainted and that no genuine progress in treating people is being made. There are important discoveries made every day that will help people, and some day brain injuries will be as treatable as broken bones. But where there's money to be made, there are always hucksters looking for a way to cash in. So be skeptical and do your own research by checking out the treatments and those touting them online. If you're being lured into a scam, there's likely at least one blogger out there who knows the scoop and has posted a warning. Keep your eyes open.
Still plodding along
Written Jul 24, 2013 8:27pm by Jim SchutteI apologize in advance for the weird formatting, but blame CaringBridge, because my blogs are formatted correctly when I enter them.
I finished the new course ahead of time last week. It was fun up until the last chapter, where I had to explain the HIPAA Omnibus Rule that the government enacted this year. Trying to condense 500+ pages of federal regulations into a few pages of simple, everyday language is mind numbing. I read several articles that purported to “simplify” the important points as they applied to physicians, but all were written by attorneys, were barely easier to comprehend than the actual regulations, and several of their interpretations conflicted with each other. When I finally finished, I had to put my brain in a splint for three days to allow the circulation to return.
During my break, I found a handicap minivan for Carolyn on Craig’s List. New ones go for around $50 to $60K, which includes the $12.5K conversion cost to accommodate a wheelchair. I found a 2003 Chrysler Town & Country with 60,000 miles on it for about 1/3 that price and had our mechanic check it out. Given that we’ll only be using it a few times a month, an older model suits us just fine. It has an electric foldout ramp that opens and closes at the touch of a button. I can just wheel Carolyn in, lock her wheelchair in place, buckle her seatbelt and go.
As another part of my break, I had the posse over for dinner on Saturday. Bethany, our new regular caregiver, and I brought Carolyn down that afternoon so she could watch me cook. She seemed rather sullen and disinterested, and I worried that she wasn’t in the mood for company. I thought about taking her back upstairs and having just two or three people visit her at a time so as not to overwhelm her. But we decided to keep her downstairs and see how things went. Mike and Deb arrived first, and she immediately perked up and was all smiles. As the others arrived, she just seemed to get happier and more engaged. We ate dinner in the screened breezeway on the south side of the house, and she seemed to enjoy herself until about an hour and a half into the festivities, when she started looking fatigued. So Bethany took her back upstairs and put her to bed.
Having these dinners is good for my morale as well as Carolyn’s. Being with her every day, I don’t notice many of the tiny but cumulative improvements in her overall level of awareness and cognition, and her attempts to communicate. But people who haven’t seen her in a few weeks do notice, and having them point out their own observations reminds me that we are making progress, however slowly. And, of course, who doesn’t enjoy an evening of dinner, drinks and laughter with friends?
Carolyn’s behavior is, on occasion, more complex and showing more personality. This afternoon, I handed her a chocolate, which she took and started to put in her mouth. Then she stopped, looked at me with a grin, and started to throw it off the side of the bed. Just as I said “Don’t!” she laughed at me, then popped the chocolate in her mouth and ate it. In the mornings, sometimes she awakens me by softly calling my name. Granted, it still sounds more like “Nim,” but the love in her voice and smile is unmistakable. The people who say to me “I don’t know how you do it” have no clue about what it means to be totally committed to another person. I couldn’t imagine not doing everything I can for her.
About 20 years ago, I had a freelance job editing training manuals for a medical specialty organization. The one that left the biggest impression on me was on the topic of locus of control and personal satisfaction. The author’s point was that, if you have an external locus of control—meaning that you believe that your life and happiness are controlled by outside persons and forces—you will never be happy or satisfied because you will always feel yourself a victim of circumstances. But if you have an internal locus of control—meaning that you feel yourself in control of your own life and happiness, and that it’s up to you to either adapt to your situation or change it—then you will make yourself be happy and satisfied. Our lives are, in the final analysis, the sums of our decisions. I haven’t always made wise decisions. But they were my decisions, and I’m content to live with the consequences, both good and bad. And one of those decisions was to be happy and make the most of my life, whatever comes my way.