I have been meaning to send this out for a while. Unfortunately, I’ve been having trouble getting motivated to work on projects of any kind, and once I’ve put something off, it’s incredibly easy to keep pushing until months have gone by. I do appreciate your patience! Luckily, I’ve been fairly healthy since my last update with the exception of two or three weeks right after Christmas. Besides trips to the doctor, I literally stayed in bed for two weeks and kept Jin hostage at home so he could muscle me into the bathroom. It felt like pneumonia, but I wasn’t coughing so we assumed I had some other kind of infection. Regardless, I had absolutely no desire to go to the hospital. We convinced my primary care doctor to give me some super shots of antibiotics and monitor my progression so I could stay at home and try to wait it out. After two weeks, though, we were ordered to the ER for tests, but every scan came back clear. We’re still mystified, but I’m simply grateful it ran its course.
Soon after I started feeling better, we decided to get involved with a study being conducted out of Georgia Tech’s brain lab. We had driven down to meet with the professor overseeing the lab in December, who is actually one of my old CS professors, Melody Moore. They are trying to measure brain activity in the language portion of the brain. One project is capturing an on/off signal, which could have applications for a yes/no switch. The other project captures the range of activity so it could be used as a selector of sorts. They were both pretty cool, but Jin had mentioned a machine that would display text from thinking about sign language, so my expectations were very high and I was a little disappointed. Still it was fun to try out, and we told them we’d be interested in participating in the case study they were coordinating.
They decided I would be a good candidate, so Melody came over in mid-January with the Hitachi developer from Japan to set up the equipment for the case study. I’m one of 30 ALS patients who are recording data, but I’m still not sure how long the study will last. The initial session actually went a lot more smoothly than I expected. The majority of time was spent on calibration. We went through a series of measurements where I was either supposed to try to relax my mind to get a ‘no’ or activate my mind to get a ‘yes’. Once the different results were plotted, they tried to draw a line between the ‘yes’ results and the ‘no’ results. From then on, the location of my subsequent results determined the system’s yes/no response. I did really well with ‘no’, but had a harder time with ‘yes’. After they tweaked the shape of the line and adjusted the sensor on my forehead, though, we got a few correct responses. They left the system for me to work with, and I had every intention of being a model participant, but I was still tired from earlier and had a relapse of fevers and extreme fatigue, so we never got in the habit of collecting data. I’m embarrassed by how little we have used the system and we have given it up as a lost cause at this point. I feel pretty horrible about the whole thing.
In mid-February we went to the ALS clinic. I was a little worried since I felt as though my breathing had gotten considerably worse. It had become noticeably harder to force a deep breath, my breathing felt shallower in general, I had frequent headaches, and I felt tired through most of the day. I hoped they wouldn’t recommend I wear my BiPAP during the day as well as at night. I know that’s a likely option in the future, but I already feel partly removed from my life. Adding a mask that will further restrict movement and interaction with Luke will make that feeling even stronger. Surprisingly, the respiratory techs at clinic reported my breathing hadn’t deteriorated as I had expected. I scored 53% which is actually the same as last time! I was very surprised. They did want me to wear my BiPAP more during the day to see if that would help with the headaches I reported, but otherwise didn’t have any other instructions. I’m actually being good and have started wearing it when Luke naps. Regardless of my respiratory score, though, I believe my breathing has suffered over the past few months. I’ve always been pretty aware of changes to my body, and I know it is harder to breathe. Still it was nice not to get confirmation.
For the most part, there haven’t been many noteworthy events or any purchases of new medical equipment. Jin did buy me a SlingBox, though, which I absolutely love. It lets me control the TV with my computer instead of the remote; the buttons on the remote finally became too troublesome. As for my condition, I don’t feel like there’s anything new to report, but the things I’ve been having problems with continue to progress. For instance, it has become even more difficult to talk since I don’t have enough air to force out more than a few words at a time. It makes me so sad not to even be able to talk with Luke easily. He can hold actual conversations and is curious about everything he sees and hears, but I can’t really answer his questions without considerable effort on both our parts. It’s heartbreaking when he simply can’t understand, but his patience is incredibly sweet. Everyone else is having a harder time understanding me as well, and I’m trying to resign myself to using my laptop all the time to communicate. I haven’t given in yet, though, because the setup makes me feel so isolated from everyone, especially Luke. Regardless, I know I’ll have to give in soon.
I’ve also gotten to the point where I eat very little by mouth. I’ll sometimes take a few bites at dinner for a taste and eat something here and there, but for the most part eating doesn’t seem worth the effort. Moving food around to chew takes so much concentration and energy that half the time I don’t even appreciate the flavor. I simply want to swallow so I can stop working so hard. It doesn’t help to know I must be putting on quite a show for everyone else at the table. I’m sure they don’t care, but I do. It’s impossible for me to be comfortable with how I look while eating. Fortunately, I truly don’t care about not eating even when I know I’d enjoy the food offered. I’m a little shocked at myself, since I absolutely loved to eat. I thought I would be miserable over not eating, but I’m not. Even if I do get a craving, when I think about how much of a hassle it will be, the craving disappears rather quickly.
One symptom that I don’t remember mentioning before is something they call emotional lability. Basically, my emotions can be a little uncontrollable and will be triggered by the smallest thing. The crying especially has gotten a bit out of control. When Jin read Luke “The Mountain that Loved a Bird,” I was fighting tears from the second page. Jin caught me tearing up at the end, which of course meant I immediately lost the fight. Luke must have been confused, since I was crying but laughing as well because I knew there was absolutely no reason to cry. I can keep tears from actually falling the majority of the time, but I still tear up with annoying frequency. If a commercial or show is even a little bit touching, I end up teary eyed. And I’m fighting tears during every church service. Other ALS patients take medications to help, but I have always been nervous about meds designed to level emotions. I would much rather handle this without adding yet another pill to my day. Especially since the medications must affect the entire range of emotions; I can’t see how a drug could only regulate the extremes. I worry I’d end up feeling very little emotion at all which would be much worse than what I’m dealing with now.
Other than that, everything just seems more difficult. My arms and shoulders especially seem significantly weaker. Even placing my hand over my wheelchair controller or using the switch takes enormous concentration. My neck and back ache almost constantly, it takes a ridiculous amount of effort to hold my head up while taking a drink, and I’m never quite as comfortable as I would like to be. And I hate being weak. I try not to dwell on it too much, though, because I know it will only keep getting worse. It’s frightening to realize that I am currently as strong and functional as I will probably ever be. In a few months, I may look back on today and count myself fortunate to have had so much of myself left. I can’t explain how much I envy people in wheelchairs who are in a static state. I think it would be wonderful to know that your current limitations are what you have to work with and work around for the foreseeable future. Once they have their new situation handled, they can move forward. It’s maddening that after I learn to adapt, everything changes again. There’s no time to relax and take a relieved breath. Instead I sit waiting for the next loss and the new corresponding frustration.
Through all the frustrations, though, Luke is so much fun. He talks in complete sentences, and hearing his thoughts is highly entertaining. I found out that Luke’s confident he could use a plane to touch the stars if we’d buy him one that wouldn’t crash all the time. Apparently his toy planes don’t cut it. He’s also doing fantastic using the potty, but we haven’t tackled bedtime yet. He’s definitely up to preschool standards, though, which is fortunate since he’ll be going to Alpharetta Christian Academy starting this August. Luke will only go twice a week, but I’m fairly sure I’ll be sobbing on his first day. If I weren’t certain he’d love it, there would be no way I could give up my time with him. Luke is such a sweet little boy and loves to be helpful. He presses the elevator buttons for me, fixes my wheelchair feet, opens doors, and does anything else he thinks he can handle. He can definitely still be a trouble maker, but we got pretty lucky. I’m going to miss him when we head to California for a wedding at the end of the month. We’re not staying long and I know he’d be miserable, so Abbie is taking him to see her parents in Florida while we’re gone. Somehow I think the beach, a boat, and fishing will make him much happier. He probably won’t even notice we’re missing! My little sister, Jenni, is traveling with us to help with equipment and other logistics. She’s actually staying with us for a few months and has been a huge help taking over some of my care. Luke has no shortage of playmates! Even with Jenni’s help on the trip, though, I’m sure it will be interesting. Wish us luck.