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Thread: Check out my girl

  1. #21
    Rick,

    You are right. It is hard to predict because everyone is so different. I can only relate my experience as a quad, 10 years post, who now walks unassisted. I got the vast majority of my return in the first two years. My insurance had a limit of only x number of PT visits/year, but I still thought I was progressing enough and getting enough benefit that I continued outpatient PT 3x/week (as did my PT) for 18 months post, paying out of pocket. Fortunately, with some budgeting, we had the means to do so. But........ the last of my recovery occurred about 6-7 yrs. post, it just slowed dramatically. I still have some deficits, but compared to no function, nada, below the neck initially (except I was breathing unassisted which I was told was a mystery why, C3-4, otherwise I would have died before help arrived), I am extremely grateful. As far as walking, people think I just have arthritis or an old injury. On a good day, less perceptive people don't even notice anything wrong. When I was looking for a new PT, I went to a general PT clinic but interviewed for somebody who had significant experience working with spinal cord injuries (she used to work on a SCI unit at a rehab facility). She turned out to be the best PT I had, including the ones from my rehab stay and oupatient clinic.

    I was 37 when I had my accident. I think age and being athletic played a factor in my return, and will with your daughter. I think motivation is key as well, and I think she has that advantage also, even if she had a bad day now and then and feels like giving up, recovery is exhausting and sometimes painful, that is normal. I spent about once a month in tears feeling sorry for myself. Then there is that unknown "luck of the draw" or "mystery" or "God" factor or whatever you want to call it with incompletes that causes more dramatic returns in some than others.

    My return was more linear. It was fastest in the beginning and gradually slowed over time. But with others it doesn't work that way. My 15 year old had a tennis coach intern last year that had broken her back leaving her paraplegic about three years earlier. She had been an Olympic soccer hopeful. She took her first steps at five months post, had just started regaining any function. I am very perceptive (I am an RN), and would never have known anything was wrong with her. She will never compete at the top of a sport, but I watched her play tennis, and she is pretty darn good, a solid recreational player. (By contrast, I can't play tennis at all, lose my balance, even though I played competitively through high school.)

    My physiatrist told me to give it two years, that is the time frame that most people need to see what they will end up with. I know that for a 14 year old, two years seems like forever though. Shoot, two days seems like forever. I wish you all the best of luck.

  2. #22
    Thanks for the lovly post, very encouraging. I'm so glad to hear how wonderful your return has been. Your right, 2 yrs. does seem to be a long time, but that's ok, as long as she continues to improve. We'll be leaving next month to attend PW for at least two months over the summer, it should be a good trip, taking the whole family.

    Here's how SCI has tempered my wife and I: This past Sunday afternoon my youngest daughter (10) got thrown off the neighbors horse and broke her arm. When I got there, Hannah couldn't stop telling me how sorry she was (my wife has been very adament about no horseback riding) and was more worried about mom's reaction than her arm. After getting treatment, all Rosie and I could do was to fall to our knee's thanking the Lord that it wasn't worse, praising God that she fell on her arm and not her neck. Our persective has been greatly enhanced since Sarah's injury.

    Last week Sarah tried walking with crutches and did better than expected. It's nice to see her walking more upright.

    No B & B yet though. When did your's get better?

    Thanks again for sharing.

    Originally posted by dunwawry:

    Rick,

    You are right. It is hard to predict because everyone is so different. I can only relate my experience as a quad, 10 years post, who now walks unassisted. I got the vast majority of my return in the first two years. My insurance had a limit of only x number of PT visits/year, but I still thought I was progressing enough and getting enough benefit that I continued outpatient PT 3x/week (as did my PT) for 18 months post, paying out of pocket. Fortunately, with some budgeting, we had the means to do so. But........ the last of my recovery occurred about 6-7 yrs. post, it just slowed dramatically. I still have some deficits, but compared to no function, nada, below the neck initially (except I was breathing unassisted which I was told was a mystery why, C3-4, otherwise I would have died before help arrived), I am extremely grateful. As far as walking, people think I just have arthritis or an old injury. On a good day, less perceptive people don't even notice anything wrong. When I was looking for a new PT, I went to a general PT clinic but interviewed for somebody who had significant experience working with spinal cord injuries (she used to work on a SCI unit at a rehab facility). She turned out to be the best PT I had, including the ones from my rehab stay and oupatient clinic.

    I was 37 when I had my accident. I think age and being athletic played a factor in my return, and will with your daughter. I think motivation is key as well, and I think she has that advantage also, even if she had a bad day now and then and feels like giving up, recovery is exhausting and sometimes painful, that is normal. I spent about once a month in tears feeling sorry for myself. Then there is that unknown "luck of the draw" or "mystery" or "God" factor or whatever you want to call it with incompletes that causes more dramatic returns in some than others.

    My return was more linear. It was fastest in the beginning and gradually slowed over time. But with others it doesn't work that way. My 15 year old had a tennis coach intern last year that had broken her back leaving her paraplegic about three years earlier. She had been an Olympic soccer hopeful. She took her first steps at five months post, had just started regaining any function. I am very perceptive (I am an RN), and would never have known anything was wrong with her. She will never compete at the top of a sport, but I watched her play tennis, and she is pretty darn good, a solid recreational player. (By contrast, I can't play tennis at all, lose my balance, even though I played competitively through high school.)

    My physiatrist told me to give it two years, that is the time frame that most people need to see what they will end up with. I know that for a 14 year old, two years seems like forever though. Shoot, two days seems like forever. I wish you all the best of luck.
    Rick

  3. #23
    Rick
    The video brought tears. Good luck this summer at PW. We have just started hearing about the project maybe we can talk? We live in Colonial Hgts.Va. Not far from you,can I give you a call?
    rmarchiano@micropact.com
    Thanks

  4. #24
    Dunwawry,

    Dont think age or athlitics has anything to do with revovery. I was 24 when I broke my back at T12. Be before my accident i was one the fittest people around i had just completed five 5km road races before my accident and was in top shape from going to the gym and swimming in the sea. I haven't gained 1 thing since my injury and there is nodoby that tried as hard as i did in phisio, I used to walk around the gym everyday with leg splints and too no avail did i get any return.

  5. #25
    Originally posted by EDD:

    Dunwawry,

    Dont think age or athlitics has anything to do with revovery. I was 24 when I broke my back at T12. Be before my accident i was one the fittest people around i had just completed five 5km road races before my accident and was in top shape from going to the gym and swimming in the sea. I haven't gained 1 thing since my injury and there is nodoby that tried as hard as i did in phisio, I used to walk around the gym everyday with leg splints and too no avail did i get any return.
    Perhaps not in your case, but maybe in others, who knows. I believe for the incomplete, an "atheletic" frame of mind would definitely be a good thing. Sarah does not have one of these "athletic" minds,... yet. Therapy is hard work and she'd rather not have to endure this, but she also realizes that the road to recovery goes right through therapy and hard work, therefore she does her best.

    Rick

  6. #26
    UPDATE:

    Well, we're back to 600 mg Neurotin a day (up from 300). This past week end Sarah's left foot has been burning and tummy gets upset at nightime. The foot makes going to bed hard. The pain keeps her up.

    We get warm towels and try elevate it. Seems to help a little.

    I'm thinking it may have more to do with her bowel program. She uses a suppository every third day (but went 4 days last Saturday). Perhaps too much time in between. I think we're going to start giving her laxatives again (instead of just stool softeners) and try to get a good flush out. Wife said last few times, while there was movement, not as much as she would have liked.

    We're busy planning for our summer trip (2 months) to So. Cal. to attend PW. Leaving 6/12.

    Let me know if ya'll have any input in regards to the foot thing.

    Rick

  7. #27
    Avoid laxatives, but I would go to an every other day bowel program and see if this helps. Every 3rd day is too long for most people. A complete bowel clean-out every time she has a bowel program is not needed, and is not healthy in the long run.

    (KLD)

  8. #28
    Originally posted by SCI-Nurse:

    Avoid laxatives, but I would go to an every other day bowel program and see if this helps. Every 3rd day is too long for most people. A complete bowel clean-out every time she has a bowel program is not needed, and is not healthy in the long run.

    (KLD)
    Will do, but there's nothing worst than sitting on the pot for 1.5 hr's with minimal results, which is why we went to every 3 days to begin with.

    Rick

  9. #29
    Why does it take 1.5 hours? We are successful in getting the entire program done with most of our clients in 45 min. or less. Can you talk a little more about the regimen (meds, timing, technique, diet, etc.) that she uses? Perhaps we can make some suggestions.

    (KLD)

  10. #30
    Rick,
    Glad to hear that Sarah is making great progress. I spoke to you right after she was diagnosed. Please feel free to contact me at mbrock@sci-step.com if you want additional ideas on things to do with her at home, especially now that she is using braces.

    Amazing results come with hard work and dedication.We witness this first hand every day here and would love to help you fight for her recovery! Best of luck at PW this summer-I wish her the best!

    Michele Brock

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