Is it hard to imagine a life where you reach another milestone every day? Every day you meet or exceed a goal, and are proud of yourself? That’s what my life is like, right now. Every day, it seems, I accomplish something I once saw as impossible.
Here’s a summary of each day from February 3rd to February 16th, 2013. Each day, you’ll see that I made progress, in some cases, by leaps and bounds.
February 3rd, 2013
I just got back from physical therapy (PT). I was expecting we'd do wheelchair transfers, mat scooting, and strengthening. That's what we generally do in PT. And yes, we did some of that. When I got on the gym mat, the therapist said to get my feet onto the mat, so I did, as usual, by lifting them with my hands. The therapist, however, told me to put one foot back on the floor. I'm thinking "gee, I did it wrong?" She said “lift it with your leg, not your arm.” I already ‘know’ I can't lift my leg! She said to try, and she was right. My mind was blown. I couldn't do this yesterday, but today I can lift my leg without pulling it up with my arms. Now, it was really hard, and I also swung my upper body to get more momentum, so it wasn't purely my leg strength, yet this was still a huge breakthrough.
What came next? She told me I was going to stand. Once again, I'm skeptical. I was in a big lift stand up machine a week ago, and I know the machine did the work. This therapist, who isn't my normal one, said I can stand without this machine?
Well, they devised a system with parallel bars, belts, and my wheelchair. They pushed my chair up to it, and locked the brakes. There was a young burly man behind me, and the therapist (a somewhat petite woman) in front of me, and I stood up, on my legs. It worked 100 times better than the lift machine because I could lock my knees, and the bones, of course, aren't weak like the muscles. I'm sure that most of the strength came from my arms lifting me up, and then just resting on the bones, but... I STOOD UP.
I can't walk right now... but I feel like I could fly!
February 4th, 2013
When I first entered the hospital on January 5th, I was still able to walk. But, by the end of that day, I could not. The last time that I tried to stand, my legs didn't support me, and I fell. When that happened, I was marked "high fall risk", and have had special alarms and such on my bed and wheelchair to make sure I didn't try to get up. Law requires it for 30 days after a fall -- and 30 days after January 5th is.... drumroll please... TODAY! The high-risk stuff is gone!!
So, for my next strategic move, I spoke to my physical therapist about whether I'd be allowed to sit at the edge of my bed. You know, just sit there with my legs hanging off, maybe using my computer, or whatever. They agreed! They evaluated me, and put in my chart that I'm now allowed to do that when I desire.
Occupational Therapy (OT) this morning involved using a "real" bed. The idea was to practice what life will be like at home, with the normal sort of bed people have in their houses. It was rather squishy, and therefore harder to move around than the gym mats or the hospital bed, but was a good experience.
Physical Therapy (PT) this morning involved wheelchair transfers, scooting on a mat, weight training, leg exercises, and STANDING AGAIN! Just like the video I posted yesterday, I was propped against parallel bars, and was able to stand up. I was sure that my weight was mostly on my arms, until the therapist said "stop pushing so hard with your arms, ease off." Well, I've learned to trust these people, so I did. And I was still standing without pushing so hard. Then the therapist said, to my shock, "pick up your right hand, and do not touch the bar." AND I DID. Listen, folks, that means that it was NOT my arms holding me up, IT WAS MY LEGS. Granted, it was mostly because my knees were locked, and the bones were supporting me, not the muscles. But, it was still my legs. I was able to shift my weight from side to side a little bit using my "butt muscles", and as long as I kept my knees locked, and had one hand to help with balance, I could stand. I stood twice, each time for perhaps 3-4 minutes.
For OT in the afternoon, I did a "lap", where the therapist timed me to see how fast I could do a lap around the hospital floor in my wheelchair. This will be a base time that I will need to beat in the future. My time was 5 minutes, 20 seconds.
For PT in the afternoon, I rode the bike again. She started me on level 5 (two levels higher than I'd done before) but I could only take it for 30 seconds. Then she turned it down to level 4, which I was able to do for 3 minutes, 40 seconds. Then down to level 3, which I was able to do for a full 10 minutes. Last time I was on the bike, I could only handle level 3 for 2 minutes, and got a cycling performance rating of 3.0. But today, my rating was 8.0.
Finally, we did some scooting across the gym mat. On Friday, this was really hard and it took me 10 minutes or so to cross the surface. Today, it was about 30 seconds. What the heck? I couldn't have improved that much without any practice, could I? The therapist was wowed, too. She said it was really good, and she was amazed by my progress. But, you know me, I have to figure out how things work and why. After pondering it, I figured out why it was so much easier today. The reason is that I wasn't doing it entirely with my arms anymore! My hip muscles have joined the party! Granted, my hip muscles are very weak, but they are much better suited to scooting than my arms are, so this makes scooting much easier.
Another great day! Woo Hoo!
February 5th, 2013
Today I had another shower! Woohoo! And I get yet another one on Thursday. Life is really good in the shower department. We are now having my shower in a more ordinary bathtub, instead of a special handicapped shower. To make that work, I have to transfer from the wheelchair onto a bench, then lift my feet over the side of the bathtub. It's tricky, but I'm able to do it with only minimal assistance.
My OT is (jokingly) complaining about the amount of paperwork I'm giving her. I keep accomplishing her goals early, so she has to write new ones. She is very pleased with my progress.
For PT, I stood up again today, several times. I also did weight training and mat moving and transfers. Pretty much the same stuff I usually do, actually. PT's next goal is to perform a car transfer, where I will transfer from the wheelchair into an automobile. They tell me that this will be much more difficult, but I'm not too worried. I'll get it. I'm unstoppable!!
We had a staff meeting again with all of the doctors, social workers, therapists, nurses, and so forth. One of the big focuses of the meeting was about how the home needs to be modified, and when I'll be able to go home and try things out. I will still be here for 2-3 weeks, but we need to make sure everything at home is ready. Since there are too many stairs to manage at my own home, I will be living at my mother-in-law’s place until we find out how much my legs will function again. If my legs come all the way back, of course, we'll go back to my home. If not, we'll think about modifying my home or moving. So, there's a lot of planning and figuring out that's going on with the homes.
In a nutshell, I'm beating all of the therapy goals, and we're already talking about going home. Wow!
February 6th, 2013
I'm excited, because I just did a CAR TRANSFER. I pulled my wheelchair up to a car, and then using a slide board, I was able to get out of the wheelchair and into an automobile. The car is a Chevy Malibu, which they have in one of the hospital rehab gyms, for the purpose of practicing car transfers.
I've been hearing, pretty much since I started rehab, about how difficult car transfers are and how I really need to build my strength, etc. You know what? It wasn't that hard! Granted, I will still need to practice this more, and I'll need my wife Tracy to be involved so that when we're out of the hospital, she knows how to help me. But, this means I can travel in a normal car! This is huge.
This afternoon I went... drumroll please... SWIMMING! Aquatic therapy is held at the YMCA, and guided by one of the great physical therapists (PT) here.
I started out feeling pretty stupid, because although I knew I had to ride in a van to the YMCA, I completely forgot that I would need a jacket to wear outside. If I had thought ahead, I would've asked Tracy to bring me one, but I didn't. Thankfully, the weather wasn't too cold, so I just wrapped myself up in a blanket. It worked. Next time I'll be better prepared!
I got to ride in a transit van for the first time. They put you in the van and strap your wheelchair in place, and off you go. It was fantastic to get out of the hospital for the first time in a month. Just driving down the street and looking out the windows was really nice.
The way you get into the pool is by doing a wheelchair transfer to a plastic chair on a lift. It lowers the chair into the pool, and there you are. There was one other patient along, too, with her PT, so I watched them do the chair lift. Then, I got to go down. It felt magical to be in a pool! It was awesome!
It was shallow (ranging from 2.5 - 3.5 feet) but I was able to do a lot of work with my feet. I was standing, kneeling, even stepping very slowly. Some of it was REALLY hard, since my legs and such are so weak. I became really unsteady, and couldn't tell exactly where my legs were a lot of the time. I gave them a really good workout in a way that would've been impossible without the pool. It felt soooo good.
When it was time to go, my therapist was getting my chair ready, but it looked to me like the other patient really wanted to get out of the pool. Well, she said it was okay, but you know, it's only polite to let ladies go first. Just out of the goodness of my heart, you understand, I let her go first.
While they were getting her out, I didn't have to do any "therapy" exercises. I just enjoyed myself, swimming with my arms and having a great time until they were ready to pull me out. It was like being a kid again, and having my dad take me to the pool to play.
I'm looking forward to the next time!
February 7th, 2013:
After aquatic therapy yesterday, my legs feel really good. I think the pool helped them a lot. The result is that I can't sleep, I'm too happy to sleep. Ever been too happy to sleep? Maybe when waiting for Santa Claus as a kid? That’s how I feel.
Of course, this was partially brought on by the nurse and PCT (personal care technician) who keep stopping in to see if I need anything. That wouldn’t be a bad thing, except they do it In the middle of the night while I'm sleeping! With most of their patients, they have to reposition the patient periodically during the night, as well as do some other medical things, but I'm doing all those things by myself because I'm bound and determined to be independent. So now the nurses just come in and complain that I don't need them. Actually, I'm kind of enjoying that. :-)
This morning, my nurses tried to teach me to use a (I don't know how to put this delicately) commode. Unfortunately, the commode was not the right kind for me, and ended up hurting me and caused me to bleed. Due to this problem, we had to cancel my shower for the morning so they could address the problem. So, it was kind of a tough start to the day, but we all know there will be setbacks, right?
I wasn't going to let that keep me down. The rest of the day was great. My feet and legs felt so good from yesterday's aquatic exercise that when I got to the gym I said I really wanted to move them, and I did. I rode the bike at level 4, and got a cycling performance rating of 9.0, better than ever before.
Then, I did some standing, each time getting better posture. Being able to stand without help will be a long process and will take months. But, each time I do it, it's going to help a little more.
I did a lot of other exercises and weight training, too. I'm now up to 10 pound free weights for my arm work.
In the afternoon, I practiced more car transfers. I'm really confident with car transfers. Unlike transferring to bed/mat, when you transfer to a car there are a LOT of things to grab onto. So, I feel really safe, and I find it quite easy! I can't wait for the chance to try it with my wife Tracy, so she can see how it goes, too. I'm hoping she'll be able to join us tomorrow afternoon to try it with me.
Three days ago, OT had me do a lap around the hospital floor to see how fast I could move the chair, and my time was 5:20, but today, I did it in 4 minutes flat. Keep in mind, that was after PT and car transfers. I can't believe how strong I'm getting!
Finally, I had TR (Therapeutic Recreation). I don't have this as often as other therapy, and it's kind of the "fun" therapy. They decided to put together a game of scrabble with me and 3 other patients. To make it more challenging, they wanted to put weights on our arms so we'd get exercise while we played. The other patients got 3 pound weights, and I got a 6 pound weight. Well, I said, “that's no challenge! Give me a 10 pound weight”, so they did! I played scrabble entirely with the 10 pound weight strapped to my wrist and I won the game, too.
Finally, I had a quick meeting with the TR staff about an outing. I really want them to take me out in public to do something fun, and they are onboard with the idea, but have to find something that's possible to do. I'm pushing for a train trip, even if it's just a 10 minute trip, so I can see what it's like to ride a train in a wheelchair. I may have convinced them to let me try, maybe. We'll see. If not, the backup plan is to go to the Milwaukee Art Museum. That'd be fun, too.
Either way, it's been a great day!
February 8th, 2013
My nighttime nurse just came in to give me my morning medicine. These meds are for acid reflux, which I was having in the ICU, probably because I wasn't getting any exercise. I was getting a lot of meds at the time, and it was just upsetting my stomach. I told her I didn't think these meds were needed anymore, and that I'd like to discontinue them.
This is the same nurse that has been complaining that I don't need her for anything. This was the only medicine or treatment that she's been giving me during her 8 hour shift. She left the room grumbling about how maybe she'll see me for 3 minutes tomorrow in case I need her for something. HAHAHA... I think I'm developing a mean streak.
February 9th, 2013
I think I may have outsmarted the staff. They've been looking for a commode that would work for me, and so far they have been largely unsuccessful. I suggested that the bench that I use to take showers would work perfectly. I convinced them to try it, so now they set it up in the bathroom, in the shower space, for me to use every day. Well, since I'm already on the shower bench, it doesn't make sense to put me back in bed for a sponge bath afterward, does it?! I may as well just take a shower. What I'm saying here is that I'll get a shower every single day. I've beat the system!
I may be sick, but I’m not sure. My stomach was upset for part of the day, and I didn't have as much energy as usual. I guess it happens.
Kevin and Mia came to visit me in the morning. Tracy and Alex came in the late morning and stayed all day. And Tim and Cree drove down from Steven's Point, again, and joined us for most of the day.
We played Connect4, Sorry (the board game), darts, pool, and foosball. Had fun!
February 10th, 2013:
The staff here which takes care of me consists of many people. One such role is that of the Personal Care Technician (PCT) who helps me out. They have not gone through medical school like the nurses, but help out with many of the basic things like helping you reach things, taking your blood pressure, getting you drinks, and similar things, to take the load off of the nurses.
Most of the PCTs I've met are students who are working as PCTs while going through nursing school. But, interestingly, I made friends with one PCT who is going to be a graphic designer. He loves art, and his schoolwork is filled with beautiful art work. Every day I ask him what he's been drawing, and well, today he brought his computer with his portfolio and drawings. Wow, this guy is really talented!
We have less therapy on the weekend than we do on weekdays. Today I had a half hour of OT, and a half hour of PT, so that's one hour of therapy, vs. three on a weekday. I don't like that. I'd rather do more therapy.
The OT was someone I hadn't met before, named Fran. She worked my arms very hard to build more endurance. This wasn't a problem at all and I was more than happy to do so. We did the "arm bike" (you turn the pedals with your hands) for 10 minutes. She started it out with a hard resistance, making it hard to turn, but, I stuck with it for 9 minutes, even though my shoulders were aching. Then, I turned it up to the hardest level for the last minute. I barely made it through, but I did. She was impressed with me.
We also did some weight training on the pulleys. She said if I wanted, I could do more weight training on my own while she was working with another patient. My family was here, and it was lunch time, and we needed to finish lunch before PT, so I had to turn her down. Otherwise, I would have.
The PT was Aimee, who I've worked with before, but it's been a week or so. She was really impressed by how much I've improved in my transfers and scooting. Since my arms were still exhausted from OT, I convinced her to exercise my feet and legs. I surprised myself at how much stronger my legs were even vs. Friday. We did a lot of leg, foot, and hip exercises, and finally did some stands. I stood up 5 times, and I saw myself in a mirror. I was looking good. It looked like I had the right posture, the posture I'd have when normally standing.
When we were done, my arms still felt tired, but my legs still wanted more. I asked if I could ride the foot bike while the PT worked with other patients, and they said it was okay, so I did. I broke all of my records for cycling efficiency, on a harder setting. It felt so good!
My brother, his fiancee, my wife and son were all here to cheer me on, which meant a lot. I had a great day!
I should add that I also have exercises that I can do in my room. I didn't settle for just the extra time on the leg-bike, I also did exercising independently. This is a fight I'm taking very seriously.
February 11th, 2013,
OMG, what a day! I slept well today, waking up at 6:30, which has been my target. I got my routine started perfectly and got my breakfast on time. At 7:00, I was prepared to do my morning routine to get ready for the day. I have 2 hours (and it's a challenge in my condition) to get this done, but I was ready to go. Apparently the nurses weren't. It was 8:00 before they finally came to help me, so I did not have time to do everything. I didn't get to bathe at all, and ended up 15 minutes late for therapy, just because they weren't available to hand me stuff. It's very frustrating. I've had some extensive meetings with the staff since then to try to figure out how to schedule this better. I want to get this organized and make it work properly tomorrow. We WILL solve this problem.
Since OT started 15 minutes late, I convinced the therapist to give me extra time later. OT was really different today. We practiced skills like using the elevator, maneuvering in crowded areas, and using the kitchen. It was pretty cool, really. Tomorrow, I think they're going to let me cook my own lunch! I'm hoping to cook a frozen pizza from my wheelchair. I haven't had a frozen pizza in ages. :-)
PT was just as exciting. We did wheelchair transfers without the slide board. So far, each time I've transferred from the wheelchair to another surface (bed, mats, benches, etc.) I've used a small wooden board to slide across, like a little bridge. Well, today PT said that my arms are strong enough that I should try doing it without the slide board. I was skeptical, but I've learned to always try what they suggest, and I did it. In fact, it wasn't even hard. I moved from the wheelchair to the gym mat with no slide board, and no help. Then I went back. Then I went over again. Then I went back. It wasn't even hard.
The therapist said that since it went so well, we should try transferring into a bed. We tried the ADL bed, which is a normal bed, like you have at home. That was harder, but was still pretty easy.
Once again, I find myself to be unstoppable. It was another incredible day.
February 12th, 2013:
It worked! My meetings with the staff, to organize my morning routines, paid off. Yesterday, I got everyone together, along with the nursing shift manager, and I outlined the problems, and asked how we could rearrange things so that the timing could work. We made up a plan, wrote it down, and executed it today. Everything went well! I was able to
take care of my own morning routine with only assistance in handing me some things, and wheelchair transfers (which require supervision by hospital rules). I had a full shower, all done by myself. It went like clockwork!
The big accomplishment of the day was that I was able to dress myself in the wheelchair. Putting my shirt on is easy, but the rest is harder than it sounds! I'm so flexible from all the workouts that I can lift my legs up onto my lap, one at a time, and put my socks, pants, and shoes over my feet. Pulling the pants up is the hardest part, since I have to be sitting in the chair the whole time. I have to lean to the side really far to get part of my body off of the seat. Then I pull up as much as I can on that side and then switch and do the same thing on the other side. Doing this, I can inch my pants up slowly. It was hard, but I succeeded!
For PT today they tried hooking me up to a brand new, special, bike that they just got. A training person from the bike company was here, and was training the PT staff in how to use it. This bike is quite high-tech and involves hooking up electrodes all over the patient. They give shocks to the patient's muscles to make them contract, so the bike itself will actually try to get the muscles going and give a better workout. It also monitors your own muscle movement and effort, and adjusts the bike accordingly. It was very complicated, and took about 45 minutes to hook me up to the thing (primarily because of all the training and setup that were necessary.) In the end, I'm not sure that I liked it. The electric shocks did not feel good. But, it was pretty nice that the staff thought that I should be the first person to try it.
We had a staff meeting today, where they discussed my progress and discharge goals, as we do every Tuesday. If all goes well (and it might not, there are a lot of variables yet) I may be discharged next week. Knock on wood!
In yesterday's update, I said that I planned to make a frozen pizza with OT today. Unfortunately, that plan fell through, but we still plan to do that on a different day.
Therapeutic Recreation had me play darts today with a weight on my arm to make it more challenging. I learned a bit about how to throw darts from a wheelchair. Not sure that I'm likely to use that skill very often, but TR is usually more of a fun thing. They are still working on a short train trip, or maybe a visit to a museum. We plan to do that on Monday.
I stood again for afternoon PT, and this time he had me ‘march’, lifting one leg at a time. I'm only able to lift a little bit, and I have to use my arms to hold me up, but, it is working those muscles a bit, and showing them what they have to do. I also did a lot of other leg exercises from a sitting position.
Tomorrow is swimming again! I’m looking forward to that.
February 13th, 2013:
Today for OT, we went to different spots in the hospital to practice opening doors from the wheelchair. It wasn't too hard. I'm not too worried about opening doors. I can generally figure out a way to get them opened. However, there are doors that I can't fit through in the wheelchair. That'll be a bigger problem! We also did a game where we passed an 8 pound ball around in a circle very quickly. Eight pounds is a rather heavy ball (there are lighter bowling balls for kids than this) and this did tire me out, though I think the therapist was just as tired as I was!
PT did a lot of leg exercises with me in the morning. They even threw in some extra time, so I was able to get a little extra therapy, which I loved. Though, I was really tired afterward. I took a short nap (in the wheelchair) which helped a lot.
In the afternoon, PT took me to the pool, and we went swimming. I loved that! I was amazed at how much stronger I was today vs. last week. I was able to stand in the pool and walk. YES, I WALKED. In the pool, and with some help, and not very well, but I walked. Being in the pool is my favorite thing to do in therapy. I wish I could do it every day!
February 14th, 2013:
I bet you didn't know that I'm a domestic diva.
For OT today, I cooked my own lunch. It was just heating up a frozen pizza, but there are some interesting challenges when doing that from a wheelchair, including getting the oven door open without burning your legs, and reaching far enough to pull out the oven grate. I didn't have any trouble, really, and it's fun to figure out these "puzzles" of how to get things done. While the pizza was cooking, I vacuumed out the ADL bedroom. My therapist brought a cup full of sawdust and threw it on the floor, and I got it all cleaned up nicely. I was a bit annoyed when the therapist put the vacuum cleaner away though, since I wanted to put it away by myself.
After lunch, I did the dishes. The therapist didn’t know about this since she had another patient, but I stayed and did it without instruction, and washed the table top. I figure, if I'm going to be a domestic diva, I should do it right!
For PT we practiced uphill transfers without a slide board. For some reason, I've had a lot of energy and enthusiasm today, and I did these transfers quite easily. We also practiced using a "regular" bed, including transfers to/from it, which was also easy for me today.
Happy Valentine’s Day, everyone! Give your sweetie an extra hug from me!
February 15th, 2013:
This morning OT took me to a big squishy bed (more like the sort of bed you'd have at home) to see if I was able to get myself dressed. I did, without a problem.
PT had me do leg strengthening exercises, and while I have a long way to go, I'm really amazed at how far I've come. My legs are getting stronger every day. Exercises that used to be nigh-impossible are now things that I can whip off 15 reps without breaking a sweat.
My afternoon therapy was to take a shower. We waited until the afternoon because my therapist wanted to take a shower with my wife, Tracy. Wait, I phrased that wrong. Anyway, the idea was for Tracy to see the type of special needs I have when taking a shower.
Afternoon PT was the best of all. We did car transfers to Tracy's actual car and she practiced loading the wheelchair into her trunk. It all went very well. We feel good about this. I'll be able to ride in her car! We also practiced transferring to higher, uneven surfaces, which is difficult, but I did it. We did more standing and I stood for nearly 5 minutes on one of the attempts! I was able to lift my arms off the parallel bars and support myself entirely on my legs. I still have a long way to go, here, but it's really exciting.
On the one hand, I had a great day of therapy. On the other hand, we discovered that I have a urinary tract infection. This is sapping some of my strength and energy, but at least we’ve discovered it, and can work on solving the problem. Setbacks do happen in this process, but I try not to let them slow me down.
Tomorrow, I have a day-pass from the hospital, so Tracy is going to take me to my new home (my mother-in-law's home) so I can see my new living quarters, and make sure everything is okay. If all is well, I will be discharged from the hospital on Tuesday night. Everyone cross your fingers!!
February 16th, 2013
Today was my "day pass" to check out my new living arrangements, and make sure we are ready to leave the hospital. Tracy and I used what we learned about car transfers to get in her car and head down to my mother-in-law’s home where I will be living when I leave here.
The most important thing to test, of course, was the wheelchair ramp to get into the house. Without that, we were going nowhere fast! Thankfully, it worked fine. A big thanks to my brother-in-law, Kevin, for getting the ramp ready and ordering mats to melt the snow on the ramp!
I'm able to get around almost all areas of the house that I need to get to, including my new bedroom/office where I will sleep and work at my job from. My brother-in-law, Dean has already set up the office for me, including setting up a network so that I can plug in any devices I need. I can't thank him enough, for his help! The biggest problems with the office/bedroom were that I didn't have a nightstand by the bed, the carpet was hard to push the chair on, and there wasn’t enough lighting for when it gets dark. These are pretty minor issues and will be easily solved.
After hearing about my "domestic diva" post on Thursday, my mother-in-law and wife were eager for me to make dinner, so I made frozen pizzas for dinner. :-) They also made sure I could reach the dishwasher, sink, and other areas where I might be able to help with the housekeeping!
The one remaining problem is that I can't get into the bathroom, the door is too narrow. The carpenter will be coming on Monday to widen it, so when I go home on Tuesday, I'll be all set.
Home visit successful! Big thanks to my mother-in-law for all her hard work, and my niece Jennifer for helping, too. We’ll work out the rest of the details in the coming days.