Announcement

Collapse
No announcement yet.

Dr. Wise, C4/5 Incomplete 24 yr. undergrad male looking for advice and guidance

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Dr. Wise, C4/5 Incomplete 24 yr. undergrad male looking for advice and guidance

    Here is the situation, I am currently entering my senior year at the University of Nebraska-Lincoln and I find myself with life at a fork in the road. I've tried really hard to live a normal life as a college student with SCI but I am beginning to enter a right of passage that thousands of others student as myself are trying to figure out what to do in life. On September 21 it will be my sixth year anniversary bound to a wheelchair. I am having trouble deciding what route to take and there is a lot of uncertainty as to what’s in store. Thinking about what to do induces anxiety alone.
    On an individual basis I would like to continue further in my educational goals and graduate school is a possibility for me but I would also like to focus on my physical rehabilitation while I’m still young. In my eyes these two things are mutually exclusive because to put all my potential and be successful only one route can be taken alone. I'm not sure where things stand as to whether there are clinical trials that show promising results and how soon will it have an impact in the spinal cord community. Like everyone else in these forums I too hope to gain more independence and possibly walk unassisted someday.
    Do I find a job right out of college and save for potential surgeries in the next few years? I know there is an unknown time frame as to when therapies will be provided to the public. Am I better off pursing my educational goal now or do I wait for clinical trails while it’s still in their infancy? Another question that comes to mind is there a 5-15 year window for real Chronic SCI therapies that provide functional results? I know all this is merely speculation but as of now there are not many factors that are keeping me from doing what I would like to do but I'm having trouble knowing what opportunity are out there.

    #2
    Originally posted by shotglass5050 View Post
    Here is the situation, I am currently entering my senior year at the University of Nebraska-Lincoln and I find myself with life at a fork in the road. I've tried really hard to live a normal life as a college student with SCI but I am beginning to enter a right of passage that thousands of others student as myself are trying to figure out what to do in life. On September 21 it will be my sixth year anniversary bound to a wheelchair. I am having trouble deciding what route to take and there is a lot of uncertainty as to what’s in store. Thinking about what to do induces anxiety alone.
    On an individual basis I would like to continue further in my educational goals and graduate school is a possibility for me but I would also like to focus on my physical rehabilitation while I’m still young. In my eyes these two things are mutually exclusive because to put all my potential and be successful only one route can be taken alone. I'm not sure where things stand as to whether there are clinical trials that show promising results and how soon will it have an impact in the spinal cord community. Like everyone else in these forums I too hope to gain more independence and possibly walk unassisted someday.
    Do I find a job right out of college and save for potential surgeries in the next few years? I know there is an unknown time frame as to when therapies will be provided to the public. Am I better off pursing my educational goal now or do I wait for clinical trails while it’s still in their infancy? Another question that comes to mind is there a 5-15 year window for real Chronic SCI therapies that provide functional results? I know all this is merely speculation but as of now there are not many factors that are keeping me from doing what I would like to do but I'm having trouble knowing what opportunity are out there.
    Shotglass, thanks for asking these thoughtful questions. I want to take a day to mull the answers in my head before answering. Thoughtful questions deserve thoughtful answers. Will post soon.

    Wise.

    Comment


      #3
      Thanks brother. You seem to say almost exactly what I feel too. Do we give total focus on our goals and put the possibility of a cure into the backs of our minds? And suffer the occasional sense that we could be missing on gains that we might have gotten with more physical therapy? I am usually confident that I made the right choice in devoting myself to a grueling college program. But sometimes I'm not sure.

      Obviously this is my situation and you may not share any of these particulars, but I really identified with your post.

      Comment


        #4
        Originally posted by shotglass5050 View Post
        Here is the situation, I am currently entering my senior year at the University of Nebraska-Lincoln and I find myself with life at a fork in the road. I've tried really hard to live a normal life as a college student with SCI but I am beginning to enter a right of passage that thousands of others student as myself are trying to figure out what to do in life. On September 21 it will be my sixth year anniversary bound to a wheelchair. I am having trouble deciding what route to take and there is a lot of uncertainty as to what’s in store. Thinking about what to do induces anxiety alone.
        On an individual basis I would like to continue further in my educational goals and graduate school is a possibility for me but I would also like to focus on my physical rehabilitation while I’m still young. In my eyes these two things are mutually exclusive because to put all my potential and be successful only one route can be taken alone. I'm not sure where things stand as to whether there are clinical trials that show promising results and how soon will it have an impact in the spinal cord community. Like everyone else in these forums I too hope to gain more independence and possibly walk unassisted someday.
        Do I find a job right out of college and save for potential surgeries in the next few years? I know there is an unknown time frame as to when therapies will be provided to the public. Am I better off pursing my educational goal now or do I wait for clinical trails while it’s still in their infancy? Another question that comes to mind is there a 5-15 year window for real Chronic SCI therapies that provide functional results? I know all this is merely speculation but as of now there are not many factors that are keeping me from doing what I would like to do but I'm having trouble knowing what opportunity are out there.
        Very well said. I appreciate your words. I have similar thoughts quite often.

        Comment


          #5
          Originally posted by Them Bones View Post
          Thanks brother. You seem to say almost exactly what I feel too. Do we give total focus on our goals and put the possibility of a cure into the backs of our minds? And suffer the occasional sense that we could be missing on gains that we might have gotten with more physical therapy? I am usually confident that I made the right choice in devoting myself to a grueling college program. But sometimes I'm not sure.

          Obviously this is my situation and you may not share any of these particulars, but I really identified with your post.
          I agree with you on a neutral level because I want to do what's best for me but there are times when everything seems unbalanced. I wrote in hope of finding a direction that bridges the two. I do firmly believe that the choice I made was the perfect one for me but those are simply stepping stones and I'm looking for my next move. One thing I do know is that your choice of secondary education is an investment that will prove to show dividends in the long-term. I've contemplated these thoughts numerous times alone and now I hope to get insight from Dr. Wise.

          Comment


            #6
            You are still young in life and with your injury. You will always benifit from therapy and an education. In todays world I would say to keep your body healthy first with education second. If you loose your strength it would be hard to keep a job, if you have a good job with no strength you more than likely get replaced. In reality you can have both which requires a lot of hard work and who knows the future. I may be reading your questions wrong or be way off the mark but IMO staying heathy is most important. Good luck in whatever you decide!

            Comment


              #7
              shotglass5050,

              Balance and timing – tough things to manage, even under the best circumstances.

              First of all, bravo to you for approaching this dilemma from a broad perspective. A young person like yourself has many things to consider as you look forward to a career and a whole range of other life experiences.

              Next, I believe that physical rehabilitation and the pursuit of other life goals are necessarily inter-dependent; and that it would be a mistake to forsake one for the other.
              • Aggressive physical training is a means to greater mobility, health and (functional) independence.
              • A good education is a means to a desired career and lifestyle.

              So, how does recovery from SCI fit into the overall scheme?

              I start with these basic premises:
              • Given proper stimulus and training, the body has a tremendous ability to adapt and recover from SCI – the limits of which are yet unknown.
              • There will be cellular therapies available in the foreseeable future that will enhance regeneration of the spinal cord.

              Understanding that recovery is for life, planning for the future should include:
              • Prepare physically and financially to take advantage of emerging therapies.
              • Develop a comprehensive training program that is designed to maximize function.
              • Become familiar with your injury and all relevant SCI research.

              A final caveat: As important as recovery is, don’t let it consume you. Enjoy your life.

              Full disclosure: I am 51 years old, 14 years post injury (C-5), and I still allocate significant time and resources to my pursuit of recovery.
              Know Thyself

              Comment


                #8
                Dr. Wise, C4/5 Incomplete 24 yr. undergrad male looking for advice and guidance
                Here is the situation, I am currently entering my senior year at the University of Nebraska-Lincoln and I find myself with life at a fork in the road. I've tried really hard to live a normal life as a college student with SCI but I am beginning to enter a right of passage that thousands of others student as myself are trying to figure out what to do in life. On September 21 it will be my sixth year anniversary bound to a wheelchair. I am having trouble deciding what route to take and there is a lot of uncertainty as to what’s in store. Thinking about what to do induces anxiety alone.
                On an individual basis I would like to continue further in my educational goals and graduate school is a possibility for me but I would also like to focus on my physical rehabilitation while I’m still young. In my eyes these two things are mutually exclusive because to put all my potential and be successful only one route can be taken alone. I'm not sure where things stand as to whether there are clinical trials that show promising results and how soon will it have an impact in the spinal cord community. Like everyone else in these forums I too hope to gain more independence and possibly walk unassisted someday.
                Do I find a job right out of college and save for potential surgeries in the next few years? I know there is an unknown time frame as to when therapies will be provided to the public. Am I better off pursing my educational goal now or do I wait for clinical trails while it’s still in their infancy? Another question that comes to mind is there a 5-15 year window for real Chronic SCI therapies that provide functional results? I know all this is merely speculation but as of now there are not many factors that are keeping me from doing what I would like to do but I'm having trouble knowing what opportunity are out there.
                shotglass5050 is offline Add Infraction for shotglass5050 Report Post IP Edit/Delete Message
                shotglass5050,

                While some evidence suggests that intensive exercise may restore function, little is known concerning the optimal intensity and duration of exercise required. The few randomized prospective studies on the subject suggest that intensive exercise for periods of longer than 3 months (such as 12 months) are not necessarily better than 3 months of intensive training.

                I think that a more reasonable approach is to devote 3 months every year for intensive 6-hour-per-day exercises and then maintain your gains with approximately one hour per day for the rest of the year. You can do this every year. It is sort of like spring training for athletes to bring you up to the next level and then for you to maintain your fighting trim by doing regular exercise during the year.

                You can focus on a particular function every year. You can also use different techniques every year. The ones that produce the most return for you, you can try again. By the way, I suggest that you keep a daily diary of your progress when you do such work and try to document where you were and how you are possibly gaining. Memory is often misleading and you would be surprised by your attitude changes and other things that change over time.

                You should not neglect your education. Much evidence suggest that the more education a disabled person gets, the happier and greater life satisfaction the person has. This may be in part related to the fact that the higher the educational achievement, on average, the greater the monetary gains that the person has. But, it may also have to do with greater self-respect and usefulness the person may feel, as a result of the educational or professional achievement.

                The key is to improve your brain without neglecting your body and vice versa. You need to be able to do both. I know some people who have taken a lot of time to work on their body but have neglected the development of their brains. Likewise, I have known some people who have worked on improving their brains but neglected their body. Neither is good. It should not be an either situation. It has to be both.

                I agree with Rick1. You need to achieve balance in your life.

                Wise.
                Last edited by Wise Young; 6 Jul 2009, 9:27 AM. Reason: Edited the sentence on 3 months versus 12 months of intensive training for clarity.

                Comment


                  #9
                  Originally posted by Wise Young View Post
                  You should not neglect your education. Much evidence suggest that the more education a disabled person gets, the happier and greater life satisfaction the person has. This may be in part related to the fact that the higher the educational achievement, on average, the greater the monetary gains that the person has. But, it may also have to do with greater self-respect and usefulness the person may feel, as a result of the educational or professional achievement.

                  The key is to improve your brain without neglecting your body and vice versa. You need to be able to do both. I know some people who have taken a lot of time to work on their body but have neglected the development of their brains. Likewise, I have known some people who have worked on improving their brains but neglected their body. Neither is good. It should not be an either situation. It has to be both.
                  Excellent advice.

                  Getting my economics and law degrees are the two single greatest things I've ever done in my life. The people I've met, the experiences I've had, etc., all as a direct result of my law degree are profoundly satisfying.

                  I'm a little over-worked right now, but I'm taking steps to redress this. Having said that, I'm a C5 complete quad who is over-worked (and currently has a couple of alternate job offers / openings) during the global financial crisis.

                  In a real sense, it's a 'luxury' to be a highly employable individual despite complete quadriplegia - all courtesy of my education. You always need balance, and a good education is a vital part of that mix.

                  Chris.
                  Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

                  Comment


                    #10
                    great advice, folks. I also think recovery and exercise can also be a large part of enjoying life..i.e handcycle, hiking, gym, quad rugby. This is one of the better threads I read in a while. Thanks.

                    Comment


                      #11
                      In the planning and design of the SCINetUSA trial, we spent some time discussing how much rehabilitation/exercise we can ask participants in the trial to undergo. I proposed that we stipulate a 6-week period of outpatient rehabilitation where the person would come 5 days a week and work for 3-6 hours a day. During that time, the person would get some physical therapy (range of motion) and then stand in a standing frame for an hour. If the person can do some stepping (i.e. swivel the hips to move the legs while weight-supporting with the arms and upper torso), the person would then spend 2 hours walking in an overground walking device. If the person cannot do stepping, they would train in on a treadmill until they are able to graduate to the overground walking device. The goal of the training is to get the person walking in the device. At the end of the 6 week out-patient training period, if they can show that they are able to use the device safely and effectively for walking, they can take the device home.

                      We debated whether this clinical trial would be so disruptive that only unemployed people would be able to participate in the trial. After much internal discussion and some discussions with people with spinal cord injury, I believe that it is reasonable to expect people to participate in the clinical trial, undergo 6 weeks of intensive outpatient training, go home and do about 3 hours a day of locomotor training, and then continue at one hour a day for the rest fo the time. So, basically, to participate in the clinical trial, people who are employed or going to school would take 3 months leave of absence or vacation. That is one of the reasons why we are aiming to initiate the phase 3 trial in June, July, and August (summer vacation months for most college or graduate school).

                      In my opinion, to maximize the likelihood of motor recovery, we need to encourage everybody to try to engage to the same intensity and duration of training and exercise. Note that people who are successful, i.e. who are able to walk and do more, will actually train and exercise more. This will tend to separate out those who recover from those who don't recover. As long as people in all the treatment groups were to work to the same degree and were given the same opportunity, the comparison of recovery amongst the treatment groups would be valid. I have been thinking about how we would monitor the activity of each person. I was thinking of having every person wear a pedometer and then recording the number of steps that the pedometer shows every day. For example, there is a device called "Fitbug" which is a pedometer with a computer program that will upload the daily walking information to a web site. http://www.fitbug.net/v2/about.php

                      Another worry that we have is comparing walking recovery of people who have cervical versus thoracic injuries. For participants who have lower thoracic levels and incomplete injuries, walking should be easier. Likewise, people with high quadriplegia would not have the arm strength to be able to do weight support on the walking device. In the main trial for adults, we are planning to test subjects who are C5 to T10 inclusive. Those who are C5 means that they have at least biceps. Those who are T10 should have sensation down to their belly button and many may even have hip flexors (psoas) that would allow them to swing their hips to get stepping. When we randomize the subjects to the treatment groups, we will stratify the subjects by injury level and randomize within each injury level, to insure that we have equal numbers of subjects at each injury level. Finally, we will be comparing change scores, i.e. change from pre-treatment to post-treatment.

                      In summary, we are proposing that the main SCINetUSA trial to have the following rehabilition. First, before the treatment phase of the trial, the subjects will be examined three times over a period of 6 months, to ensure that their neurological function is stable (neither improving nor declining) and encouraged to stand an hour a day (in a standing frame). Second, after surgical transplant therapy, the subjects are given a week to recuperate before they start an intensive outpatient locomotor training. If they are not able to step, they will under a 6-week period of treadmill locomotor training to get them to the point where they can walk with a weight-supporting overground locomotor device. They are encouraged to walk up to 3 hours a day for another 6 weeks. After that, they are expected to walk at least an hour per day. We will be monitoring their daily walking with pedometers.

                      Wise.

                      Comment


                        #12
                        Originally posted by Wise Young View Post
                        In the planning and design of the SCINetUSA trial, we spent some time discussing how much rehabilitation/exercise we can ask participants in the trial to undergo. I proposed that we stipulate a 6-week period of outpatient rehabilitation where the person would come 5 days a week and work for 3-6 hours a day. During that time, the person would get some physical therapy (range of motion) and then stand in a standing frame for an hour. If the person can do some stepping (i.e. swivel the hips to move the legs while weight-supporting with the arms and upper torso), the person would then spend 2 hours walking in an overground walking device. If the person cannot do stepping, they would train in on a treadmill until they are able to graduate to the overground walking device. The goal of the training is to get the person walking in the device. At the end of the 6 week out-patient training period, if they can show that they are able to use the device safely and effectively for walking, they can take the device home.

                        We debated whether this clinical trial would be so disruptive that only unemployed people would be able to participate in the trial. After much internal discussion and some discussions with people with spinal cord injury, I believe that it is reasonable to expect people to participate in the clinical trial, undergo 6 weeks of intensive outpatient training, go home and do about 3 hours a day of locomotor training, and then continue at one hour a day for the rest fo the time. So, basically, to participate in the clinical trial, people who are employed or going to school would take 3 months leave of absence or vacation. That is one of the reasons why we are aiming to initiate the phase 3 trial in June, July, and August (summer vacation months for most college or graduate school).

                        In my opinion, to maximize the likelihood of motor recovery, we need to encourage everybody to try to engage to the same intensity and duration of training and exercise. Note that people who are successful, i.e. who are able to walk and do more, will actually train and exercise more. This will tend to separate out those who recover from those who don't recover. As long as people in all the treatment groups were to work to the same degree and were given the same opportunity, the comparison of recovery amongst the treatment groups would be valid. I have been thinking about how we would monitor the activity of each person. I was thinking of having every person wear a pedometer and then recording the number of steps that the pedometer shows every day. For example, there is a device called "Fitbug" which is a pedometer with a computer program that will upload the daily walking information to a web site. http://www.fitbug.net/v2/about.php

                        Another worry that we have is comparing walking recovery of people who have cervical versus thoracic injuries. For participants who have lower thoracic levels and incomplete injuries, walking should be easier. Likewise, people with high quadriplegia would not have the arm strength to be able to do weight support on the walking device. In the main trial for adults, we are planning to test subjects who are C5 to T10 inclusive. Those who are C5 means that they have at least biceps. Those who are T10 should have sensation down to their belly button and many may even have hip flexors (psoas) that would allow them to swing their hips to get stepping. When we randomize the subjects to the treatment groups, we will stratify the subjects by injury level and randomize within each injury level, to insure that we have equal numbers of subjects at each injury level. Finally, we will be comparing change scores, i.e. change from pre-treatment to post-treatment.

                        In summary, we are proposing that the main SCINetUSA trial to have the following rehabilition. First, before the treatment phase of the trial, the subjects will be examined three times over a period of 6 months, to ensure that their neurological function is stable (neither improving nor declining) and encouraged to stand an hour a day (in a standing frame). Second, after surgical transplant therapy, the subjects are given a week to recuperate before they start an intensive outpatient locomotor training. If they are not able to step, they will under a 6-week period of treadmill locomotor training to get them to the point where they can walk with a weight-supporting overground locomotor device. They are encouraged to walk up to 3 hours a day for another 6 weeks. After that, they are expected to walk at least an hour per day. We will be monitoring their daily walking with pedometers.

                        Wise.
                        dr.wise, just one question. you said for people who can step , does that mean stepping without calipers or with calipers.
                        thanks

                        Comment


                          #13
                          1) shotglass5050 many thx for your question. I'm into the same dilemma from time to time.
                          2) Dr Wise, thx for your replay. I'll consider your advice.

                          Originally posted by Wise Young View Post
                          I have been thinking about how we would monitor the activity of each person. I was thinking of having every person wear a pedometer and then recording the number of steps that the pedometer shows every day.
                          I know that Nike has a similar product. The shoes are named Nike+. It's about Nike+ iPod sensor(29$) or Nike+ sportband(59$) which works without iPods.



                          ps: Nike will not be interested to put some money in this trial? Can anyone from here ask them?
                          Last edited by cypresss; 6 Jul 2009, 4:31 PM.
                          This signature left intentionally blank.

                          Comment


                            #14
                            Originally posted by lakboy View Post
                            dr.wise, just one question. you said for people who can step , does that mean stepping without calipers or with calipers.
                            thanks
                            Lakboy, we do not require stepping by the people. We are considering requiring all subjects to be able to do weight-bearing (stand) with their feet for at least one hour per day when they start the treatment phase of the trial. This is because we do not want people to waste the 6 weeks of intensive rehabilitation that we will be providing to the them after the treatment. During those 6 weeks, we want to train them to start stepping and eventually to start overground weight-supported locomotion with a rolling device.

                            Not all subjects will be able to do stepping by the end of 6 weeks training. We are of course hypothesizing that those subjects that received treatment will be able to do so better than those that did not. This is what the trial will be testing. It is possible that all subjects recover some stepping and improve as a result of the training. It is also possible that none of the subjects recover any stepping and do not shown any locomotor improvement (measured by the WISCI score) as a result of the training. ]

                            Regarding whether an orthosis, such as calipers, will be used will depend on the judgment of the physiatrist who is running the training program. Some fo the subjects, particularly if they use calipers, will use them. Most subjects, I would imagine will need an orthosis for their foot drop. In China, they use an elastic band that is stretched in a figure-8 format around the ankle and the foot, to prevent footdrop. This seems to be quite effective. One concern that some of our therapists have is that some people may be overextending their knees when walking. If so, we may have to use a knee orthosis that prevents overextension of the knee.

                            Wise.

                            The so-called "maximum WISCI" score is obtained by choosing a particular level that the therapist believes the subject is able to achieve and then seeing whether the subject is able to achieve it and hopefully surpass that level. One worry that we have is that the intensity and type of training may differ significantly amongst centers. To standardize, we will try to require

                            Comment

                            Working...
                            X