One of the most amazing things of being here is seeing the progress people make. It is truly miraculous. When I first came here, the woman in the room across from me had a severe brain injury. She must have had a trach, which they removed, because she had a bandage over her throat. She was unable to feed herself. She could barely sit in the wheelchair. She couldn't follow commands, and she didn't speak. Her outlook looked grim. I could not see how she would ever be prepared for anything more than a nursing facility. Today, as I was doing pt, I noticed the physical therapist working with her on one of the mats. She was sitting on the edge without the aid of anything. She wasn't being held or supported by anything to keep her upright. This in itself was amazing, but then she got up and stood using the walker! I was absolutely blown away. I couldn't believe it. Had I not seen it with my own eyes, I wouldn't have believed it, knowing how she had been initially. I felt like crying tears of joy.
Later today, I saw another miracle. One of the guys that had been admitted last week for brain trauma was in the pt room. When I first saw him it was obvious that he had a tbi (traumatic brain injury). He was hooked up to oxygen through a trach mask. He had a neck and back brace. He was strapped into the wheelchair to keep him upright since he wasn't capable of holding himself upright himself. Today, not only was he no longer hooked up tho the oxygen, thus must be going through the process of capping or has been decannulated, but he wasn't strapped into the wheelchair. He still wore the neck brace, but not the back brace, and most miraculous was he was not just standing, but walking, walking without the aid of anything. He was just walking around the gym, with his physical therapist only holding onto his gait belt as a precaution. He didn't seem to need a lot of assistance. He walked one time completely around the room. I feel so blessed to have the opportunity to have seen this, to watch the progress of other patients.
While it is easy to see the progress and incredible improvement others make, it is much harder to acknowledging my own progress. I do recognize that I have made a lot of progress while here. I have worked incredibly hard, and it shows. The goals set for me when I came here were to be completely independent with the use of aids by the time of my discharge. I had to be able to be completely independent because at home I really don't have any help. There isn't anyone at home to help me with daily activities. I live with my dad, but he doesn't provide any care for me. Though I could be independent with the use of aids such as walker, wheelchair, or cane, I must be able to complete my daily activities without the assistance of another person in order to be ready for discharge. When I was first told this, I thought this would be easy. I couldn't imagine needing any aids by the time I was discharged. I expected that I'd have full functional ability - able to walk unassisted. I thought that I might need a cane for longer distances, as I had before, but never imagined that I'd need a wheelchair of walker. Granted, I hadn't really acknowledged the extent or severity of my issues. I thought it was just weakness, in which case I'd do exercises and get stronger. I remember the first day when they put me up to the parallel bars. It was expected that with the use of the bars, I could stand unassisted. This wasn't true. I couldn't even pull myself up. Looking back, I do recognize that I have made a lot of progress. No, I am not where I'd like to be. I am not back to normal, but I am greatly improved. As my goals had stated, I am able to care for myself independently with the use of aids. I am able to walk short distances and stand for short periods of time using the walker. I am able to get around using a wheelchair.
I have made progress in other areas as well, not just walking. When I first came here, I wasn't able to bathe myself. Showering was an extreme challenge with my trach. The first shower I took, took over an hour. I needed help dressing myself. I could barely stand long enough to pull up my pants. I would stand, hold onto the walker, and the aid would help me pull my pants up. I had to take frequent rests. Now, I am able to basically shower and dress in ~1/2 hour. Before, I'd need a nap after showering because it was so physically exhausting that I needed to rest. Now, I bathe and dress pretty much without help. I am able to stand for longer periods of time and can do so without being completely exhausted after. Don't get me wrong, showering and dressing is still rather tiring. Though my legs were the area of greatest weakness, I have also been able to work on the strength in my arms. When I first came here, I needed to be pushed in the wheelchair because I was too weak to push myself. Now I am able to push myself in the wheelchair and able to get myself around.
The area that I have seen the most improvement, however, is my speech. I came here unable to speak at all. I was beginning to be able to talk over the trach, but I could only say a few words. I still had to write most of what I wanted to say. Talking was exhausting and at times unpredictable. I could never be sure that when I went to speak, I would have a voice and sound would come out. Often I would go to speak, but no sound would come out. I had little control over when I was able to speak or not, which was very frustrating. I was not able to tolerate the pmv at all. Once we discovered the problem with using the pmv and got me one that worked properly, I made huge progress with my speech. I am so proud of my voice. I enjoy showing it off. I worked very hard to talk normally, and now, for the most part, just by listening to me speak, you wouldn't know I have a trach. My speech is pretty much completely normal. Occasionally, I can be hard to hear. Sometimes I have difficulty speaking, but for the most part, my speech is normal. Not only have I met all of my speech therapy goals, but I no longer need speech therapy.
It's funny what you come to see as an accomplishment and progress. Before the trach, I never thought about the things I did every day. Most people don't think about their ability to speak or do other things such as shower and dress themselves, but having to relearn everything is a challenge. Even the little things in life become accomplishments. The important thing to remember is that it is progress. You need to take baby steps and be proud of your progress. Be patient and kind to yourself, knowing that it is one step at a time, one day at a time.
Showing posts with label PT. Show all posts
Showing posts with label PT. Show all posts
Friday, August 26, 2011
Saturday, August 20, 2011
Perfect Patient
I think that it's funny how all the nurses and therapists argue over me and over who gets me. They fight over me. This weekend, the aid had me in the morning. For second shift, another aid was assigned to me, but the first aid that I had had in the morning wanted me. She offered to take 3 of the other aid's patients in addition to me, so long as she could have me. This would give the other aid 4 less patients, and thus a much easier load. The nurses love me because I make their life much easier. They don't really have to do much. I do my own trach care. I give myself my own neb treatments and can set up the o2. I can administer the Benedryl as needed. Really all they have to do is give me access to the medication. The physical therapist told me how even they fight over me. I asked why. There is nothing that I do that is extraordinary. I am knowledgeable. I am pretty much independent and don't require a lot of "care." The psychical therapist told me that the reason they all love me is because I am motivated to get better. A lot of the people that come here are not. Many of the patients here are depressed and have no motivation to engage in therapy and get better. They are depressed about their condition and their limitations. They feel hopeless. They have lost functioning ability in some way or another and they are trying to adapt to life which can seem impossible at times. Thus, they seem to give up. They don't engage in therapy because the feeling is "why bother anyway." I am not like that. I am engaged in therapy and I am motivated. I am working hard to get back as much function as I can.
The truth of the matter is that you only get so much time here. Insurance will not pay indefinitely for a person's care here. Nor will they wait until a person gets ready to do therapy. You are given only a certain amount of days that insurance will cover for acute rehab. Though there are times that insurance will cover a few more days if the rehab doctors felt it necessary and helpful towards reaching your goal of independence and going home, but they won't make exceptions if you're not engaging in therapy. What's the point of paying extra when you aren't even participating? The staff here aren't gong to appeal for extra days if you aren't participating. They need the bed for someone else, someone who will engage in therapy, is motivated to get better, and who needs it more. So what is gained by doing this? Nothing. You are still unprepared to cope with living. You haven't worked on improving your ability to function. Therefore, most likely you will end up going to a nursing home or long-term care facility.
I worked so hard to get here. The first time I was sent home, it was hell. I wasn't prepared to go home. I didn't have the services that I needed setup. In reality, I should never have been discharged home. Once discharged, we tried to get me into rehab but doing so on the outside, when not a patient of the hospital, is near impossible. You have to go through insurance and jump through a million hoops, whereas when your a patient in the hospital, it is easy to get services. When I was admitted the second time, I refused to be discharged. I demanded to go to rehab. Even that wasn't easy. My case is complicated and several of the rehab facilities wouldn't take me because of the Igg treatments. During this time, which was about a week and a half, the social worker asked several times if I wanted to be discharged and work on it from home. I refused this as an option. It would certainly make their life easier, but then I'd be in the same place as I had been when initially discharged, unable to function. I couldn't live that way. My goal was to regain as much function as possible, so that my life could go back to being as normal as possible as soon as possible. I knew that insurance would only give me so many days, so I had to make the best of what I got. I had to work as hard as I could in order to regain my strength and functionality as much as possible. It is hard. At times it's very discouraging, but just sitting there and feeling sorry for myself wouldn't change things. I need to make good use of what I do have, and focus on my strengths rather than my weaknesses, what I have rather than what I have lost. The goal of the trach is to give me more time and to help me function as normally as possible with a decent quality of life. Thus, I can't go around feeling sorry for myself. I need to learn to live with this. So maybe it is my thought pattern that helps me.
The truth of the matter is that you only get so much time here. Insurance will not pay indefinitely for a person's care here. Nor will they wait until a person gets ready to do therapy. You are given only a certain amount of days that insurance will cover for acute rehab. Though there are times that insurance will cover a few more days if the rehab doctors felt it necessary and helpful towards reaching your goal of independence and going home, but they won't make exceptions if you're not engaging in therapy. What's the point of paying extra when you aren't even participating? The staff here aren't gong to appeal for extra days if you aren't participating. They need the bed for someone else, someone who will engage in therapy, is motivated to get better, and who needs it more. So what is gained by doing this? Nothing. You are still unprepared to cope with living. You haven't worked on improving your ability to function. Therefore, most likely you will end up going to a nursing home or long-term care facility.
I worked so hard to get here. The first time I was sent home, it was hell. I wasn't prepared to go home. I didn't have the services that I needed setup. In reality, I should never have been discharged home. Once discharged, we tried to get me into rehab but doing so on the outside, when not a patient of the hospital, is near impossible. You have to go through insurance and jump through a million hoops, whereas when your a patient in the hospital, it is easy to get services. When I was admitted the second time, I refused to be discharged. I demanded to go to rehab. Even that wasn't easy. My case is complicated and several of the rehab facilities wouldn't take me because of the Igg treatments. During this time, which was about a week and a half, the social worker asked several times if I wanted to be discharged and work on it from home. I refused this as an option. It would certainly make their life easier, but then I'd be in the same place as I had been when initially discharged, unable to function. I couldn't live that way. My goal was to regain as much function as possible, so that my life could go back to being as normal as possible as soon as possible. I knew that insurance would only give me so many days, so I had to make the best of what I got. I had to work as hard as I could in order to regain my strength and functionality as much as possible. It is hard. At times it's very discouraging, but just sitting there and feeling sorry for myself wouldn't change things. I need to make good use of what I do have, and focus on my strengths rather than my weaknesses, what I have rather than what I have lost. The goal of the trach is to give me more time and to help me function as normally as possible with a decent quality of life. Thus, I can't go around feeling sorry for myself. I need to learn to live with this. So maybe it is my thought pattern that helps me.
Thursday, August 18, 2011
Motivation
Every physical therapist motivates his/her patients differently. For some, they need to be pushed aggressively. I, however, am not one of those people. Aggression does not motivate me. It doesn't help me, but makes me want to give up instead.
Today was the worst PT session ever. Up until today, all my therapists have been great. They are extremely knowledgeable and helpful. They are also very encouraging. They help me feel confident, while they challenge me. My main physical therapist is Jess, a PT student. She's here doing her clinical rotation. Because she is a student, she has to be overseen by one of the other physical therapists that work here full-time. My main physical therapist is Laura, but Laura is on vacation, so Jen is covering for her. I don't like Jen as much as I like the other physical therapists. She is knowledgeable like all the other therapists; however, she is also very abrasive. I've been working really hard. When I first came here, I was unable to stand up. I couldn't stand up at the parallel bars or even just with the walker. I essentially had to have someone hold me up or support me at all times. Then we started using the standing frame and I was gradually able to stand for longer periods of time. As my legs got stronger, I was able to stand using the walker for short periods of time; however, I was still unable to walk at all. So they put me in the LiteGait. The LiteGait is a machine that is similar to the standing frame in that it supports you while you do the work of walking. It helps you build up the muscles needed for walking unassisted, but provides support through this process so that you don't fall. To use the LiteGait, you must first get into this harness. It kind of reminds me of the canvas slings they use when a whale becomes beached so they can throw it back into the ocean. They had me lay on the table so that they could strap me into this contraption. When you are all fastened in, it is like the harness for para sailing. They then use the controller to bring you to a standing position. You hold onto handles in front of you for balance. As the machine moves forward, you are forced to walk, step-by-step. The nice thing is that with the harness, it is impossible to fall. They can change the amount of help the machine gives. It can hold you up nearly completely, the machine doing all the work, or they can decrease it so that essentially you are doing all the supporting and walking, holding your own body up. This prepares you for being able to walk with the walker.
Well, I was making progress. I didn't really need the standing frame anymore. We had tried the LiteGait a few times, and now they wanted me to try walking a few steps. I was extremely nervous. When you first practice walking with the walker, the have one therapist with you, with one hand on the gait belt. The gait belt is a thick belt that you wear so that if you begin to fall, they can support you. Another therapist follows with a wheelchair behind you so that if you do begin to fall, become unsteady, or get really tired, the wheelchair is right behind you.
When I first began to walk, I was very unsteady, but I was determined to do well. One of the things that I noticed was that my foot/leg was doing something weird. It kept shaking back and forth, almost as if I was continuously rolling my ankle. It would roll to the side and I'd work to straighten it. Then it would do the same thing. It was so frustrating. I couldn't seem to get it to work properly. My brain kept telling it what to do, but the muscles wouldn't respond normally. It took extra effort to make it work and control this weird movement. Walking, just by itself, takes up a lot of energy and this made it more so. I was so unbelievably frustrated at not being able to make it just walk normally. On top of that, this movement hurt. It was like having uncontrollable muscle spasms which can be extremely painful. To make things even worse, neither Jen nor Jess seemed to notice that my foot wasn't working properly.
I'd stand up with the walker, and almost immediately my foot would start the twitching. I'd go several feet and then be so exhausted and in so much pain and needing to sit, Jen would say, "No! You can't sit." It was very derogatory and said in a tone that suggested that I wasn't trying and just faking weakness because I didn't want to work or just making excuses. Now I'm a perfectionist, I work hard at everything I do. I always give at least 100% most times 110%. I never take the easy way out, and always push myself to the end. The next time I walked was similar. I walked, trying to work through the spasming and the pain. When I couldn't go any further, Jen was like, "Come on Melissa, you can do it. NO, don't sit. Oh Melissa...." Just that was hard enough, but then she said, "next time, I should leave the chair behind so you can't stop." All of this badgering was taking a toll on me. I was working so hard and from the way she made it seem as if I wasn't trying at all. I was trying to work through the pain and frustration of my foot not cooperating. As we stated the next trial, the pain started to get to me. Jen continued to badger me, and I was unable to go very far, only a couple feet As she continued to tell me that I could do more and that I wasn't really working, that I needed to just trust myself, I began to cry. I didn't want anyone to see me cry. I felt so ashamed. I WAS trying even if she didn't think so. As I stood for one more time, I couldn't get my foot to behave at all. I hurt, I was tired, I was in pain, I was frustrated, and I was crying. As she pushed me saying that she wouldn't let me sit until I'd reached a certain point and that I wasn't trying, that I could do better than this, I started really crying. Each step I took hurt immensely. I was at this point sobbing. I couldn't catch my breath because I was walking, and I was crying. The physical pain, however, was nothing compared to the emotional pain. I wanted to just give up right then and there. Sit down and say, you're right. I can't do this, I'm not going to do this; I give up. Finally Jess seeing just how upset I was got me to sit. When she brought me back to my room, she told me how proud she was at how hard I had worked and how much progress I'd made.
I understand that each therapist has different ways to motivate their patients. For Jen, that is badgering them. The idea is that by saying they aren't tying and they can do more will make them want to prove they are trying and cause them to push harder and do more. I don't work that way. For me, it caused me to shut down completely. I want to sit down and say "you don't think I'm trying. Fine, I won't." The emotional pain not feeling like you are trying your best but that it isn't understood or appreciated can be the worst and just makes you want to give up.
It is interesting to see how different therapists motivate. Jess motivates through encouraging me, and this works better for me. She will say, "come on, you can do it. Just a little bit further. You're almost there. Keep going." She would then say how great I did. We'd make goals and then see if I could surpass them. While practicing standing, she'd distract me so my focus was on something else. I did better with this when I'd be standing, we'd set a goal of how many minutes I could stand for. She'd have the timer, but it would be pointed so that I couldn't see it. she would then talk to me about redecorating the gym area. When I started to get tired, I'd ask if I was at the goal yet so I could sit. She'd say "almost. Just a little bit more." So I'd stand longer, figuring if I was close and it was only a little bit more, I could stick it out. Again, I'd ask, "Am I there yet?" and get the same response. "Almost. Just a little bit more" Finally I'd be too tired and have to sit down. When she'd tell me how long I'd stood for, it was well over our goal. She was sneaky in this way, but it worked.
I left so upset after that incident with Jen that I almost didn't want to do PT the next day. I wanted to refuse and not put myself through that again. It must have been discussed because though Jen still oversaw Jess and her work with me, she wasn't an active participant. She was in the room, but working on something else across the room, and for this I was grateful. In reality she had no right to be that way. Motivating patients that way may help some, but I am definitely not one of those people. I do better with encouragement. To do things in that way makes me feel like a failure then I do give up and quit. She didn't know how hard I was working. n truth, only I could know that. I was trying. I was giving 110%. I was pushing through pain to work harder and do better. I wanted people to be proud of me, and the work I was doing.
Today was the worst PT session ever. Up until today, all my therapists have been great. They are extremely knowledgeable and helpful. They are also very encouraging. They help me feel confident, while they challenge me. My main physical therapist is Jess, a PT student. She's here doing her clinical rotation. Because she is a student, she has to be overseen by one of the other physical therapists that work here full-time. My main physical therapist is Laura, but Laura is on vacation, so Jen is covering for her. I don't like Jen as much as I like the other physical therapists. She is knowledgeable like all the other therapists; however, she is also very abrasive. I've been working really hard. When I first came here, I was unable to stand up. I couldn't stand up at the parallel bars or even just with the walker. I essentially had to have someone hold me up or support me at all times. Then we started using the standing frame and I was gradually able to stand for longer periods of time. As my legs got stronger, I was able to stand using the walker for short periods of time; however, I was still unable to walk at all. So they put me in the LiteGait. The LiteGait is a machine that is similar to the standing frame in that it supports you while you do the work of walking. It helps you build up the muscles needed for walking unassisted, but provides support through this process so that you don't fall. To use the LiteGait, you must first get into this harness. It kind of reminds me of the canvas slings they use when a whale becomes beached so they can throw it back into the ocean. They had me lay on the table so that they could strap me into this contraption. When you are all fastened in, it is like the harness for para sailing. They then use the controller to bring you to a standing position. You hold onto handles in front of you for balance. As the machine moves forward, you are forced to walk, step-by-step. The nice thing is that with the harness, it is impossible to fall. They can change the amount of help the machine gives. It can hold you up nearly completely, the machine doing all the work, or they can decrease it so that essentially you are doing all the supporting and walking, holding your own body up. This prepares you for being able to walk with the walker.
Well, I was making progress. I didn't really need the standing frame anymore. We had tried the LiteGait a few times, and now they wanted me to try walking a few steps. I was extremely nervous. When you first practice walking with the walker, the have one therapist with you, with one hand on the gait belt. The gait belt is a thick belt that you wear so that if you begin to fall, they can support you. Another therapist follows with a wheelchair behind you so that if you do begin to fall, become unsteady, or get really tired, the wheelchair is right behind you.
When I first began to walk, I was very unsteady, but I was determined to do well. One of the things that I noticed was that my foot/leg was doing something weird. It kept shaking back and forth, almost as if I was continuously rolling my ankle. It would roll to the side and I'd work to straighten it. Then it would do the same thing. It was so frustrating. I couldn't seem to get it to work properly. My brain kept telling it what to do, but the muscles wouldn't respond normally. It took extra effort to make it work and control this weird movement. Walking, just by itself, takes up a lot of energy and this made it more so. I was so unbelievably frustrated at not being able to make it just walk normally. On top of that, this movement hurt. It was like having uncontrollable muscle spasms which can be extremely painful. To make things even worse, neither Jen nor Jess seemed to notice that my foot wasn't working properly.
I'd stand up with the walker, and almost immediately my foot would start the twitching. I'd go several feet and then be so exhausted and in so much pain and needing to sit, Jen would say, "No! You can't sit." It was very derogatory and said in a tone that suggested that I wasn't trying and just faking weakness because I didn't want to work or just making excuses. Now I'm a perfectionist, I work hard at everything I do. I always give at least 100% most times 110%. I never take the easy way out, and always push myself to the end. The next time I walked was similar. I walked, trying to work through the spasming and the pain. When I couldn't go any further, Jen was like, "Come on Melissa, you can do it. NO, don't sit. Oh Melissa...." Just that was hard enough, but then she said, "next time, I should leave the chair behind so you can't stop." All of this badgering was taking a toll on me. I was working so hard and from the way she made it seem as if I wasn't trying at all. I was trying to work through the pain and frustration of my foot not cooperating. As we stated the next trial, the pain started to get to me. Jen continued to badger me, and I was unable to go very far, only a couple feet As she continued to tell me that I could do more and that I wasn't really working, that I needed to just trust myself, I began to cry. I didn't want anyone to see me cry. I felt so ashamed. I WAS trying even if she didn't think so. As I stood for one more time, I couldn't get my foot to behave at all. I hurt, I was tired, I was in pain, I was frustrated, and I was crying. As she pushed me saying that she wouldn't let me sit until I'd reached a certain point and that I wasn't trying, that I could do better than this, I started really crying. Each step I took hurt immensely. I was at this point sobbing. I couldn't catch my breath because I was walking, and I was crying. The physical pain, however, was nothing compared to the emotional pain. I wanted to just give up right then and there. Sit down and say, you're right. I can't do this, I'm not going to do this; I give up. Finally Jess seeing just how upset I was got me to sit. When she brought me back to my room, she told me how proud she was at how hard I had worked and how much progress I'd made.
I understand that each therapist has different ways to motivate their patients. For Jen, that is badgering them. The idea is that by saying they aren't tying and they can do more will make them want to prove they are trying and cause them to push harder and do more. I don't work that way. For me, it caused me to shut down completely. I want to sit down and say "you don't think I'm trying. Fine, I won't." The emotional pain not feeling like you are trying your best but that it isn't understood or appreciated can be the worst and just makes you want to give up.
It is interesting to see how different therapists motivate. Jess motivates through encouraging me, and this works better for me. She will say, "come on, you can do it. Just a little bit further. You're almost there. Keep going." She would then say how great I did. We'd make goals and then see if I could surpass them. While practicing standing, she'd distract me so my focus was on something else. I did better with this when I'd be standing, we'd set a goal of how many minutes I could stand for. She'd have the timer, but it would be pointed so that I couldn't see it. she would then talk to me about redecorating the gym area. When I started to get tired, I'd ask if I was at the goal yet so I could sit. She'd say "almost. Just a little bit more." So I'd stand longer, figuring if I was close and it was only a little bit more, I could stick it out. Again, I'd ask, "Am I there yet?" and get the same response. "Almost. Just a little bit more" Finally I'd be too tired and have to sit down. When she'd tell me how long I'd stood for, it was well over our goal. She was sneaky in this way, but it worked.
I left so upset after that incident with Jen that I almost didn't want to do PT the next day. I wanted to refuse and not put myself through that again. It must have been discussed because though Jen still oversaw Jess and her work with me, she wasn't an active participant. She was in the room, but working on something else across the room, and for this I was grateful. In reality she had no right to be that way. Motivating patients that way may help some, but I am definitely not one of those people. I do better with encouragement. To do things in that way makes me feel like a failure then I do give up and quit. She didn't know how hard I was working. n truth, only I could know that. I was trying. I was giving 110%. I was pushing through pain to work harder and do better. I wanted people to be proud of me, and the work I was doing.
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