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Thread: very frustrated

  1. #11
    Your doctor was wrong to not send you for therapy. You really should have had an inpatient rehab program (it is not too late for this). A comprehensive rehab program will not cure your TM, but it will help you maximize what you do have, and learn how to be as independent as possible, even with the paralysis. Ask your neurologist (who sounds like he doesn't know much about rehab) to refer you to a good physiatrist, and ask about either an inpatient or outpatient comprehensive rehabilitation program for you. Good luck, and stay on these forums.

    KLD

  2. #12
    I have to go back to see the neurologist after I get the mri. I was planning on asking him about physio again. When we were talking about it at the last apointment I wasn't really able to think about it too much because I had so much other information to try to absorbe. My upper body strength is ok (well except for my hands), and I can transfer and things without any help. It's weird because I have cerebral palsy and my muscles were always very tight, but now I can straighten my legs out all the way for the first time in my whole life, and they don't hop around so much. Now they are really floppy. It's completely opposite to how they use to be and it seems really foreign to me.

  3. #13
    Newfie - sounds as if someone is at least LISTENING now, how refreshing. Hope you get some good results.
    Know how tough it is to hear those words. Hard not to look back on my "other life."
    Keep after those docs -

  4. #14
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by ~newfie~
    I have to go back to see the neurologist after I get the mri. I was planning on asking him about physio again. When we were talking about it at the last apointment I wasn't really able to think about it too much because I had so much other information to try to absorbe. My upper body strength is ok (well except for my hands), and I can transfer and things without any help. It's weird because I have cerebral palsy and my muscles were always very tight, but now I can straighten my legs out all the way for the first time in my whole life, and they don't hop around so much. Now they are really floppy. It's completely opposite to how they use to be and it seems really foreign to me.
    You might want to ask for a bone density test also. If your bones are in reasonable shae maybe some FES cycling exercise might help with a bit of the muslce atrophy. It can help your cardio and your frame of mind if nothing else. I'd also try to get a lot of time with an OT and see if you can learn new ways to do things with your hands.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #15
    Newfie, go for physiotherpay. It may help you in many ways.

    I had mild cerebral palsy prior to an incomplete SCI at C 6/7 in 1993. My SCI was not TM, but I hear what you are saying. We aren't lost causes because we've each had two major disses in this lifetime.

    Do what you must to get the best healthcare you can for yourself. I'm glad you pushed until you found a neurologist willing to listen to you. Make the case with your doc for getting physio. I have had this therapy on and off through the years and it has helped in a variety of ways from energy conservation in ADLs to building muscle where I can to endurance to stretching.

    Keep us posted, okay?

    I wish you the best. Mem

  6. #16
    Quote Originally Posted by Sue Pendleton
    You might want to ask for a bone density test also. If your bones are in reasonable shae maybe some FES cycling exercise might help with a bit of the muslce atrophy. It can help your cardio and your frame of mind if nothing else. I'd also try to get a lot of time with an OT and see if you can learn new ways to do things with your hands.
    I was told almost a year ago that I have osteoarthritis (not sure if that's the correct spelling) in my hips, but I'm sure there are some excercises I could do if someone would show me some. As for my hands I try to do things to strengthen them as much as I can, but I've learned to always carry an extra set of clothes around with me when I go out because I'm always spilling things.

    Quote Originally Posted by LaMemChose
    I had mild cerebral palsy prior to an incomplete SCI at C 6/7 in 1993. My SCI was not TM, but I hear what you are saying. We aren't lost causes because we've each had two major disses in this lifetime.
    My cousin keeps joking about how I'd be a good science experiment because I have Cerebral Palsy, Septo-Optic Dysplasia (Optic Nerve Hypoplasia) which caused me to blind since birth and causes problems with my thyroid gland, and now maybe tm. We figure if anything else is added on top of all that, everything will cancel itself out! lol.

    Thanks for the encouragement Lookingup

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