March 24, 2017

I had my other two driving lessons this week! On Monday, I drove for two and a half hours straight...all the way to Maryland and back! I drove through the tolls, got gas at a gas station, and traveled on a bunch of major road ways/interstates. On Thursday, I was with a different instructor and practiced parking and backing up. I was perfectly fine with parking when the spot was on my left, but for some reason, right sided parking was way more difficult! I'm waiting to get a letter from the DMV saying they've reviewed my medical records and are allowing me to schedule my road test. Once I get that scheduled, my instructors said they'll take me back out to practice a few more things so I am more prepared for the test. I'm still surprised at how natural it feels and don't know why I was so nervous about getting back behind the wheel. However, I know I'm going to be extremely nervous for the actual test! And it really sucks I can't just go out and practice every day because I don't have my own hand controls yet.

It felt like I had been gone from therapy for months, when it was really only two weeks. I was so glad to be back though. The pool sessions went really well and in the video I have, you can tell that I'm doing the walking pretty much on my own. All Dennis was doing was keeping my knee straight while I brought the other leg forward. It was definitely the best video I have from the pool so far.

I was really upset that I wasn't able to do the Esko, like I had planned, but it was still an eventful week. The therapist that works with the exoskeleton had a lot of meetings with the company, so we postponed my first session until next week. Quyen felt so bad about it that she tried to come up with something new and exciting for us to do in therapy to make up for it. She had me wear these leg length braces that helped me lock out my ankles and knees, making standing a lot easier, this way I could just focus on my core and do some weight shifting exercises. I wish I could have braces like this and learn to walk in them, but my therapists said that it would just be training my body "the wrong way" of doing things and kind of hinder my progress. Instead, I have to take the longer, harder way and teach my body the correct gait techniques and also wait for the regeneration of nerves and muscle strength to come back.

I also had a reassessment with Dennis this week. I was a little disappointed it was this week, right after having time off and directly after a session in the pool. My legs were so exhausted and I just felt like the assessment could've gone a lot better. Some of my core measurements, like reaching side to side, have improved in the last month, but everything else was pretty much the same. They've extended my therapy until the end of May for now, and I'm just hoping to get as much time in as I can before my birthday in July (because I turn 26 and lose my parent's insurance...but that's a discussion for another time).

I did some over ground walking with Dennis, and he was much harder on me this week (like more so than usual!) It's much easier for me to walk when someone completely straightens my knee, allowing me to weight shift better and bring the other leg forward. Well, first of all, he wasn't straightening my leg very much, which automatically made me work harder. Secondly, he had me supporting a lot more weight than usual and the harness wasn't holding me up very much. By the end of the day, I was pretty tired, but my legs were completely shot. I could've possibly pushed myself to do more, but my legs were absolutely useless. Guess that was a good way to get back in the groove of things!

I had a phone appointment with RTI- the stim bike company- on Friday morning. I talked to the girl for almost an hour. She changed a few settings and really took the time to explain things to me. A couple of the settings were locked in place, like my resistance and control speed, which wasn't allowing me to progressively improve. She changed it so that once I meet a certain speed or start going too fast, I can increase the resistance. You would think this would make everything harder and cause my power generated to decrease, but the craziest thing happened. My power went from around 9-10W to 18! I could tell it was harder to pedal, like when you increase the resistance on an elliptical or other piece of gym equipment, but somehow, my performance was better because all the other measurements improved.

I took an exam for school on Thursday and was really disappointed in myself. I didn't do very well, and I think it was more because the questions seemed impossible. It was supposed to just be a review, since I've already completed this course, but I just felt like it was way over my head. When my professor emailed me to ask what accommodations I might need in the future, I started thinking about it.. I don't think I need specific accommodations because of my situation, I think it's more because I had ONE exam for the whole course. I don't learn like that. I'm already a horrible test taker, and because I'm doing all of this on my own, at home, by just looking at powerpoint slides, I think I need something more...like more quizzes along the way, to make sure I'm actually learning the material. I do so much better with repetition, not memorization. I'm hoping to talk to my professors about this next time we talk, because this is so frustrating.

March 16, 2017

It's been a pretty exciting couple of weeks. Florida was the perfect Christmas present...we were able to leave some snow and cold temperatures for a little bit of sunshine. Not quite as much sun and warmer temps as I had hoped for, but it was still better! The first place I traveled to in a wheelchair was to Punta Cana last February. I wasn't even a full two months out of acute care, I still had my loaner wheelchair (the one that weighed over 60lbs!), and I was still pretty dependent on other people. But Dusty's grandfather paid for my trip and I was just so excited to be out of the hospital and go somewhere warm that it seemed like the perfect opportunity. As you can recall, traveling was quite an adventure.. they don't really understand the term "wheelchair accessibility" in the Dominican. Luckily, they were so hospitable that it didn't really matter (well, that and the fact that Dusty makes anything work, haha. If I can't get my chair somewhere, he just picks me up!)

It's unbelievable to me how many people abuse the use of wheelchairs in the airport. I know that airports can be big and many people, even if able to walk, can't quite walk those distances. But all of the people I saw in wheelchairs couldn't have actually needed it. I try so hard to not be judgmental, but I was the only one in a long line of wheelchairs that didn't just jump right out of it to walk through the security sensors. I, instead, had to be individually patted down. One woman even tried to make a joke about it from a few lines over saying that I was getting a "free massage." Not quite that enjoyable, lady. I was also the only one that had to use the aisle chair to get onto the plane because I couldn't just get up and walk to my seat on board. And it's also unbelievable to me that only a handful of employees even know how to work the aisle seat (if you don't know, it's this little "L" shaped chair with straps that hold you in and it's narrow enough to go onto the plane and down the narrow aisle). Dulles was actually great at helping me get onto the plane, but the man that brought that chair to me when we landed in Orlando was completely clueless. He couldn't understand why the chair wouldn't move and it's because the brakes were still on it.. but all in all, it was a lot smoother than my previous travel experience and I'm learning more and more with every place I go. I just wish there was more of a standard for how to travel in a wheelchair and that different airports had the same requirements and procedures. I expect for it to maybe be different in other countries, but in the US, we should keep it the same. Let people know what they are supposed to do and keep it the same, it's hard enough to go different places in a wheelchair and if we at least knew what was required of us, we could be more prepared and not stick out even more than we already do...or hold up lines more than we have to!

Once at the resort, we mostly just stayed on the premises and near the pool. I stuck to my diet and we cooked almost all our own meals in our condo, which really made me happy because I wasn't about to take steps backwards after finding out that I'd finally lost weight! And we really must have done a good job because Mom lost 3lbs during our visit!

I was so fortunate to have been able to meet up with so many people I knew while in Florida. On the first full day we were there, two of my friends and classmates drove an hour and a half to come spend the day with me. They're currently doing a rotation in Tampa and didn't hesitate at all once they found out how close I was. Over the next couple days, I was also able to catch up with my grandparents and aunt and uncle that also live nearby. We met my grandma for lunch and towards the end of our meal, my grandfather even stopped by. He's been having some back problems and we didn't think we'd be able to see him, so it was nice to be able to catch up with him as well.

We spent one day by the pool and got to spend it with my aunt and uncle, who we hadn't seen in a couple of years. We also even met new friends! There's a woman that owns a timeshare at the resort and she was vacationing with two of her neighbors from Wisconsin. I think she was automatically drawn to me because when her daughter (who is now in her 40s) was 17, she was in a car accident that left her paraplegic. She instantly struck up a conversation and it was more natural than the other people randomly passing by and asking things like "are you okay?" I always just smile and politely say yes, but I'd like to come up with a good answer to that...maybe I should've said "no, my drink is empty." haha, Do you think that would work? I'm kind of used to people buying me drinks at bars...it's always been like that. Dusty loves when a guy asks him if he can buy me a drink because he always replies with "buy her as much as you want, she's going home with me!" But I think this happens even more now because of the wheelchair...that's one thing I don't really get insulted by. Hey, if that's a "perk" to the chair, then I'll look at it as one while I can. I also get a lot of compliments about my smile or how pretty my eyes are, which has actually always happened as well. I'm not sure about the eyes, but I know I have pretty teeth--as I should, having gone through nine years of braces! And I hadn't thought anything about it until someone complimented me in front of my brother and he got so mad saying "what, does that guy feel better about himself now that he complimented the girl in the wheelchair??" Maybe I'm just naive, but I never even thought about it like that before. And now I can't help but question every compliment I get! And what a shame. Being nice and pleasant is one thing and I think our world needs more of that, but there's also a difference between that and showing pity. I think James is wrong though, I don't think I'm showed much pity. I like to think maybe people are drawn towards me because of the wheelchair, but also that maybe I motivate them or just by continuing to live my life and follow my dreams, I'm showing people there aren't boundaries. That maybe their aches and complaints aren't as bad as they make them out to be. And if it takes a little compliment about my eyes or smile to strike up a conversation like that, then I'll take it.

But anyways, this woman, Diane, invited us to her condo one night because they have a balcony and can see the fireworks from both Epcot and Magic Kingdom. I hadn't seen the fireworks before and I know it isn't the same as actually being at one of the parks, but it was still a sight to see. She also wanted me to check out the accessibility of their place since it was different from ours, which I really appreciated. I was so intrigued by her daughter's story because she is grown with a family of her own now and her daughter, Diane's granddaughter, has started an adaptive water skiing program. I saw videos of different people getting out on the water for the first time and it was just so uplifting to see all the smiles...this is definitely going to be another adaptive sport I have to try! (I'm on a mission to try as many as I can, while I can). The program is called "Graceful Wakes"--here's a video https://vimeo.com/175471208

My last day was really exciting. Awhile back, one of my roommates shared my GoFundMe page on Facebook to an optometry forum for doctors across the US that we are all a part of. A female optometrist in Orlando saw this and sent it to a woman she knows, named Donna. Donna's husband is also an optometrist in Orlando and their son had ADEM. He is now 14 and fully recovered, but I've talked to this woman a lot over the past year. I know it's kind of crazy how we can get connected to people via the internet, but it's also pretty amazing if you think about it (in some cases, at least). Donna was talking to my mom and trying to plan our last day in Florida as a surprise for me. She wanted to meet us for lunch and have me meet the optometrist in Orlando to talk to her about my future profession. In the end, our plans kind of fell through. Donna's son was in a play at his school and she had to be there to help. Instead of just canceling plans, she made arrangements for someone (a woman whose daughter actually plays Cinderella at one of the parks) to meet us at the gate and get us into Epcot for the day. It was so great! I haven't been to Disney since our family trip when I was in the 5th grade and I honestly don't remember very much. I also really wasn't old enough to appreciate Epcot. Not only was I older this time, but I also got to see it through different eyes and check out the accessibility (which I'd heard was great, but I have learned to not always trust it when people say that). I'm happy to report that I was actually pleasantly surprised! They have a separate map for those with disabilities and a whole map key with different symbols that tell you if you can stay in your manual chair or if you have to transfer into a seat for the ride or presentation. There aren't a ton of rides at Epcot because it's more educational and has the different countries, but I was still able to do pretty much everything they had. I'm fortunate enough to be in a manual chair already, otherwise I think you would've had to transfer to one of the standard ones they kept there if you were going to get on a ride and stay in your chair. I think it would've been harder for someone in an electric chair, but at the same time, there are so many people in electric scooters, that I think it wouldn't be as inconvenient as you'd think.

But that brings me to another point...those electric scooters people rent!! AH!! The only thing worse than everyone using a wheelchair at the airport is seeing everyone in those scooters at Disney! I mean, I had a hard time driving an electric chair when I was in rehab, so you can only imagine some of these people driving them around a crowded amusement park. I saw several people run into things and one guy even took a turn too sharp and was on two wheels. I'm not making this up. Older couples would rent them, put little sun visors on the top with bug screens, put all their bags on the back, and then have trouble driving them around. I can't tell you how many times I waited in the wheelchair line behind these people and then they forgot how to turn the scooter back on, so we ended up being the last people in the ride or movie/event. At least once we were in the park and saw all of this, I understood why even with hundreds of handicapped parking spots, we still had trouble finding one.

The day was made even better by me being able to meet one of my friends from undergrad who is currently living in Orlando. She works for Disney and I haven't seen her since graduation. It kind of sucks how people grow apart as you get older and time passes, but it's also amazing if you get the chance to catch up and this was one of those moments.

Our trip home was possibly even easier than our trip to Florida as far as accessible travel goes. The flight attendants both ways went out of their way to make me comfortable (without drawing extra attention to me, like a lot of people do), and my wheelchair was ready and waiting for me as soon as I got off the plane (and this time, the girl actually knew how to work the aisle chair!) Matter of fact, the girl that brought the aisle chair to me when we landed was the same girl that helped me onto the plane when I initially left Dulles. She came on to get me and said "I thought I recognized your name on the list!" I joked back, telling her that I wasn't gone nearly long enough if they still remembered me!

I have a huge exam next week-- it's one exam for the whole class. I'm not taking a midterm and doing other assignments, just this one test. I think there are benefits and drawbacks to that, but I'm going to be so happy when it's over. I feel like all I'm doing is studying and somedays, I don't feel like I'm even accomplishing anything. So hopefully the time I've put into studying will pay off next week. I'm at least a little more at ease with how things are going because the professors I'm working with now have been very attentive and quick to answer emails with any questions or problems I've had.

The last thing I wanted to mention was that I had my first driving lesson on Monday!! I was so nervous, convinced that driving with hand controls would be much like driving a manual car--which I have practiced before and never even made it out of a parking lot. My driving instructor, Tammy, made me feel so comfortable behind the wheel. Like, as soon as I started driving, it felt pretty natural. I hadn't thought about it before, but I think I had two things going for me. 1) I already knew how to drive. I know the rules of the road and the appropriate reaction time I needed to decelerate and accelerate. and 2) Everything I do is with my hands and arms now, it was bound to feel more natural than I expected. There are a lot of different kinds of hand controls, but the ones I used were installed on the right side of the wheel and I pushed forward to brake and twisted to accelerate. I started by doing a few laps around an empty parking lot, working on right turns and then left turns. Then we made a big loop around multiple parking lots, including a walmart parking lot. I was kind of feeling like if I could navigate through that parking lot with all those people not paying any attention, I could drive anywhere. And before I knew it, I was on route 50 and then 66! (two major roads through VA). I'm already looking forward to next week because I have two more lessons--Monday and Thursday, and then I have to wait a couple weeks to schedule a behind the wheel test with the DMV. But after that and after I get the car modified with the proper hand controls, I'm good to go! The next goal will be for me to load and unload my chair by myself. I think I can do it, but I think it's going to take some problem solving. I've also talked to a lot of patients that have hurt their shoulders from moving their chairs in and out of the car, so I just want to be cautious and make sure I'm doing it the best way possible. The last thing I need is to strain my shoulders or hurt a rotator cuff! Especially since those are already over used in people that are in wheelchairs. I'll post an update after my test and next driving lesson! I didn't have therapy this week because of the snow storm, so hopefully I'll have some updates from therapy as well.

March 1, 2017- I was due for a day like this!

Yesterday was one of the best days of therapy I've had in awhile...and that's saying something considering the fact that the only real "bad" therapy I've had were those 20 minutes two weeks ago.

Let me back up a little bit first. Tuesday was a good day as well. I've been working on "sit to stands" in therapy and have been able to do it from 24 inches with only minor knee support. My goal is to be able to do this from 21 inches, the height of my chair, so that I can practice at home or anywhere outside of therapy. I was able to do this with Kim in the pool on Tuesday, so I know it's an attainable goal. I was relieved that my time in the pool with these sit to stands and walking went well, because I've been having a really strange sensation in my feet. On Monday afternoon, I felt like my left foot fell asleep. I've had this feeling for the last month any time my legs were crossed, but it was totally normal. Like whenever I was in a position and didn't move for a little while. It feels just like anything would when it falls asleep and it'd go away after I move and reposition. I was happy about this change because that's exactly how my arms and hands felt before I was able to have full motor control. However, when my left foot fell asleep Monday, the feeling never went back to normal. It still felt kind of numb and tingly when I got in the pool (and my right foot did too, but to a much smaller degree). It was a weird feeling because although I don't have much control over moving my foot, I at least know where it is in space and can feel that it's on the ground or if something it touching it and this "asleep" feeling was more overwhelming than those other sensations. When we were walking, I couldn't really tell where my foot was and the numbness was really bothersome. 

My therapists were a little worried about this new feeling and asked a lot of questions. But other than the sensations I was describing, there weren't any other symptoms. No swelling, no redness, no changes. When I got to the gym, Dennis got me on the Thera-stride and while we were walking, with a therapist on each leg and one at my hips, Dr. Recio came in with his nurse. I already had about four therapists with me and when the two of them came in with my mom, I felt like I was taking over the whole gym! Dr. Recio asked me what was going on and, keep in mind that he is a little dramatic with a lot of personality, he told me "I am very concerned. This is not good at all. I'm very unhappy...you need an MRI right away! Today! This could mean the hardware in your spinal cord is slipping." My heart almost stopped! I don't know why, but I was thinking the "hardware" he was talking about was a phrase for everything that makes up the spinal cord and instead of "slipping," I heard "snipping." Instantly, my mind started picturing a spinal cord with all the axons "snipping" and tearing, dying away. For a brief second, I thought "oh my gosh, what if I'm not getting better? What if I'm actually getting worse?" Luckily, Mom stepped in and reminded him that I didn't have any hardware...I had ADEM. I guess, he was thinking I had actually metal and hardware in my spine, like many of his patients. And when those individuals complain of numbness, it's a very bad sign. Dr. Recio said "Oh, yes. ADEM. Okay, never mind. No worries. Just monitor." and walked away. Just like that. It was the biggest roller coaster of emotions all within a two minute time span, but thank goodness he didn't seem as concerned in the end. He told me to let Dr. Pardo know, so I sent him a message on "My Chart" just giving him an update. Not even two hours later, he called on our way back to our room. Dr. Pardo asked me to clarify if I thought that I was losing sensation that I had already gained, or if this was a change that was in addition to what I had. It's kind of hard to explain, but I feel like the numbness was just stronger than my perception of where my foot was in space. I was concerned this was a bad sign because I felt like I had more control before. It was more "normal." He assured me that this is actually a good sign. This is nerve recovery and regeneration. It's what is supposed to happen. Isn't it crazy that things kind of have to get worse before they get better? He also warned me that since these nerves are waking up and starting to work, there's going to be some misfiring and my body may not know how to react. I may experience some pain and to keep him informed so he can prescribe me some pain medications if need be. Oh, how I hope it doesn't some to that! I've been so fortunate thus far to not experience the nerve pain I've heard other people complain about. 

The rest of my session with Dennis was successful. He tried walking over ground for the first time since that failed attempt a couple weeks ago. This time, he let me take the top harness off, requiring me to support my own upper body and use my core strength. Not only was I able to bring each leg forward on my own, with the therapist only support my knee, keeping it straight as I bring the other forward, but I was doing much less compensation from my hips. It's so much easier to use my hips and just throw my leg forward because those muscles are stronger than those in my lower leg. The movement usually comes more from my hips, instead of my knee coming up and forward. Dennis was really impressed and I was so happy considering how awful this exercise went the last time we tried. I honestly didn't last very long. We did a few times up and down the length of the gym...4 times to be exact. I took a break after each length and by the last one, my body was completely exhausted. There have only been a handful of times I've felt my body really be pushed to the point where I don't think I can continue. I'm not usually one to take breaks and I can always make myself do just "one more" of whatever exercise we're doing, but I really felt like I was going to collapse if I tried to keep going. 

We took it easy that night and since Kristen and her mom were still in Baltimore (from Knoxville) for her second week of therapy, the four of us got take out and stayed at the Hackerman Patz House, where we stay each night. The have a large family/living room with a long table and plenty of space for us to hang out and be comfortable. It was so relaxing to just sit around, telling stories, sharing laughs and experiences with people that have kind of been through the same thing. 

But on to Wednesday. The best day. Quyen changed my 8-10 therapy to 10-12 and you'd think that we'd have so much more time in the mornings, but every single time, Mom and I have barely made it there by 10! I love having a slower start and not feeling rushed. Since the GEO was a little weird last week, probably from not being calibrated, Quyen suggested that we work on standing and sit to stands in the gym instead. We used the electrical stim that works through patches on my stomach and my back and I feel like that gives me even more control. I mean, as soon as they turn it on, I automatically sit with better posture because it activates all the muscles in my back. Our first goal was to stand for ten minutes, but I barely made it to seven. It was really difficult because she was not letting me lock out at my knees. And because she wasn't letting me do that, I automatically tried to lock out at my hips. But when she didn't let me do either and wasn't giving me much support, I was having a harder time holding myself up. The next stand was longer and then the third stand was THIRTY minutes! And she had even taken away the hip harness, only giving me some support at the knees when I needed it. Also, the stim was turned off for the last fifteen minutes of that. I thought it was going to make a big difference, but neither of us could really tell. 

While I was standing, I asked to get measured for the exoskeleton--the Esko--again. The Esko is like a personal exoskeleton that you wear. It goes around your legs and hips and you get to walk over ground with it. It has been a goal of mine since I started last year to be able to use this robotic-like walking machine, but my hip width was a couple inches too wide. Even in January, I didn't quite make the cut. When Chris measured me this time, he didn't even really understand why I was so worried I might not fit..or why I didn't understand what he meant when he said "you're in." Not only have I lost inches on my hips, but I weighed myself after therapy, and I've lost 18lbs in the last six weeks! I get to start in the Esko in the next couple of weeks and we're going to do it for an hour instead of my regular therapy to see how exhausted it makes me. If I can handle it, we'll try to schedule it outside of my regular therapy, but I think it's smart to not be too ambitious at first because I've heard a lot of patients say how tiring it can be. I just couldn't believe I lost that much weight. I've been doing everything right- counting calories, eating at home and not going out, making everything homemade, etc and I haven't seen it really pay off over the past year. I know something was working because everyone else in the family was losing weight, but for some reason, I wasn't. And I was the one working out for multiple hours a day. So when Chris told me that I fit and could finally do the Esko, I automatically teared up. Finally. Finally, that hard work is paying off.

As if I wasn't having a good enough day at therapy, the pool helped to end on an even higher note. I was with Lizzy and we practiced more sit to stands in the water at my 21inch goal. The walking was really great and I felt my right leg stepping better than I think it'd ever done in the pool. My left leg is usually pretty good at coming forward, but I need a lot more assistance with the right side. I was amazed at how much better it went! Now if only this would happen again next time I'm in the pool because I know how impressed Kim would be!

I also finally had a wheelchair appointment. I got a new seat cover that actually fits my cushion instead of being two sizes too big, new casters (the front wheels) because the old ones were a little crooked, and a new foot plate that is stationary instead of the one I had that flipped up. They also took some of the extra hardware and brackets off, which added up to three pounds taken off the chair. It doesn't sound like a lot of weight, but making the chair lighter at all should help me as I learn to load my chair into the car when driving. Speaking of driving, I have my courses scheduled!! They got me in right away and I have three appointments scheduled so far. Hopefully that's all it'll take for me to learn the hand controls and then I have to take a behind the wheel test with the DMV, but I start on the 13th, only a week and a half away!

I leave for Florida tomorrow--a trip with Mom and Sally that I got for Christmas. All I wanted was to go somewhere warm, and what better than a girls' trip?! I thought this was such a perfect way to end therapy and am excited to leave on such a good note...now I can really enjoy my vacation! And I get to come back to start driving, using the Esko, and continue to kick butt in therapy! Things are really looking up and I have such a good feeling about the upcoming weeks!