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Thread: At the beginning...curiousity

  1. #1

    Question At the beginning...curiousity

    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    Life is what happens to you while you're busy making other plans. -- John Lennon

  2. #2
    Hey there! We've PM'd about most of this already but I wanted to stress that it's important to get on with your life immediately. You are not working with the same reality that you once did. Life has changed. So, organize your life, your attitude, your activities to wring as much enjoyment out of your days as possible. Life will continue to change. You will improve. It may take a long time to realize where you will end up in all of this. However, as you improve and as you learn more about yourself and your new conditions, make adjustments to keep up with your improved abilities.

    A good example of this is shopping. I used to love going to the mall during the holidays. It was so festive and people-watching was excellent. However, after SCI, getting around isn't so easy and a crowded mall can be tough when you tap tap around with hiking poles. However, I've found that I can go to the mall, rent a wheelchair and push it. That's not too taxing and I manage to enjoy everything that I did before. Besides, my friends are happy to have the chair to stow their packages! While there, we go for lunch or dinner and generally have a great day. The circumstances have changed, but with adaptions, the enjoyment of it can be as much. Next year, maybe I can forego the wheelchair and manage the mall without it. Who knows?

  3. #3
    I keep trying to think that this time that I'm walking with a cane and have limited movement in my legs will get better and that I'll be back at home living on my own by some point next year - thats one big goal...still i'm setting small goals but those are dependent on at what speed my nerves regenerate.
    I'm having trouble accepting "right now" as a time to be satisfied. My life has changed a ton, went from always on the go, to not even being able to go so much; living with my parents who are both 62 and do more than i can, which continually makes me frustrated. I'm very thankful for their help through this time, but their ability to help me help myself will not be forever.

    thanks again truly
    Life is what happens to you while you're busy making other plans. -- John Lennon

  4. #4
    Quote Originally Posted by LIP26 View Post
    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    After leaving the hospital after 100 days in traction, I came home (parents) for 6 weeks. During this time, I learned to walk pushing a wheelchair around the house.

    I then went to Warm Springs, Ga. where I spent 3 months at the foundation and a year in the Georgia Rehabilitation Center.

    I have never had massage or acupuncture treatments.

    The only place I didn't recover anything was movement of my left ankle. I have drop foot there.

    I am a C5-C6 incomplete Quadriplegic/Tetraplegic.

    I always tried to be positive and just work harder. If you set your goals too high to reach, then lower them. (Knowing what I do now about walking, I would use a chair part time and not want to walk full time as I did.)

    The only person I ask for assistance from is my wife of 40 years.

    The doctors told me that adjusting to a new body would take me (Quad) 4 to 5 years to fully adjust. He told me paras are usually 2 years.

    As I have told many people, your life is what you make of it. You can be hateful and mean to everyone and be alone and miserable or just accept who you are and regain your pride and be happy. Don't worry, you'll make many new friends.

    Good luck and keep your chin up.
    Millard
    ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne


  5. #5
    Moderator jody's Avatar
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    didnt get rehab, started going to a gym with a pool and a pool lift, three years after impact. almost two years saving for a my trike, and six months before I could use the recumbant at the gym. Id say it was four years to get to a cane or trekk poles.

    before that it was two crutches or a wheelchair. and braces.
    I can wall walk with some skill, and stand without braces, but to walk around still use, braces and cane or the wall.

    I have had to start over. like now, My balance is terrible and I lost all my muscle tone over the last few month, so I have to start inventing exercises since I cant afford a gym at all right now.

    I notice a lot more clonus recently so walking is again challenged in a new way.

  6. #6
    Asheville --
    how old is your brother? is he walking yet? when did his injury occur?
    Life is what happens to you while you're busy making other plans. -- John Lennon

  7. #7
    Senior Member
    Join Date
    Sep 2010
    Location
    Boise, ID USA
    Posts
    274
    Quote Originally Posted by LIP26 View Post
    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    I spent 5 weeks in ICU and CCU, with pneumonia, a week of temporary pacemaker and 4 weeks on vent. I could barely walk with big stable walker when I started rehab. At that time I had very weak muscles, general spasticity, bad balance and problems with blood pressure. I spent two months in rehab. I had occasional PT for three months after that. I have a massage weekly, which feels good but doesn't seem to have a lasting effect. I have not tried acupuncture. There is a post from Dr. Wise Young which says that Acupuncture does help spasticity but the effect is short-lived. I have been very fortunate in my recovery, able to walk 10 miles and ride 20 miles on my mountain bike in the hills. I still have lots of spasticity, problems with hand dexterity and sensation, about 75% of pre-SCI strength, and some days I fatigue easily. My injury was fracturing C1/C2. I keep a diary of progress to help see my improvements. Sometimes I get help from my wife. I am 55 and have very good disability insurance so recovery is my life now. For you it seems that you should concentrate on recovery for as long as you are seeing significant progress and can afford it. Good luck.
    C1/C2 walking quad, SCI from 4/2010

  8. #8
    Quote Originally Posted by LIP26 View Post
    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    So, I don't have a SCI, but I thought I'd share my husband's experience thus far. He's a T4 (some discrepancy b/t incomplete or complete-we've been told both, so who knows). He's just over 5 months out from his injury.

    1. He's not yet walking, but his PT has is planning on starting KAFO braces with him in January/February. Hospital policy here is that you need to be 6 months post injury before they'll begin working with the braces. We're both very excited about this.

    2. 1 week in ICU, 4 weeks in Acute inpatient Rehab, 6 more weeks of outpatient PT (3 weeks of outpatient OT...mainly just to work out the new wheelchair). Once his TLSO brace came off (8 weeks post-injury), he began an intense exercise therapy program at a place called SCI-FIT. He now does 4-5 hours with them each week, plus 1 hour on the FES bike. He went back to work full time 3 months after his injury, or else he'd probably be doing more of this. SCI-FIT has been AMAZING for him and has helped him recover a lot.

    3. He goes to the chiropractor once a week for an adjustment and massage. This has been great. His hips were all out of alignment after the accident (he had his first adjustment 3 months post injury, but began massages about 6 weeks post). No acupuncture.

    4. At the time of his accident, he couldn't feel/move anything below his nipples. He now has some sort of sensation and/or motor control to his pelvis. He can move his hip flexors, which has been the most exciting gain. He can feel "deep touch" in his legs, and can feel when he's doing load bearing exercises (i.e. standing frame).

    5. Injured on July 9, 2011 during a bike event ("Death Ride"...terrible name for a bike ride..). Front tire blew, he went over the handles while going downhill at about 40 mph. 6 ribs broken, C7 slightly fractured (no spinal cord injury there though) and T4/5 broken.

    6. I can't fully answer this for him, but, from what I can see, he tends to focus more on what he can do, as opposed to what's different. Honestly, he does most everything for himself. He's had an amazingly positive outlook about this all, and I think that's really what's been important.

    7. We get by just the two of us. We have a daughter, who was 16 months old at the time of the accident. All of our family lives on the east coast (we're in CA). We had family living with us for the first three months after the accident, but we've found ways to balance work, a toddler, and a dog since they've left.

    8. He doesn't "accept" this as anything final. He (and we) accept where he is at the moment, but, if we've learned anything over the last 5 months, it's that things change. Even if he doesn't recover any more sensation, he'll get stronger, we'll get better at adapting. So why "accept" anything? We are hopeful that he will either independently regain more function, or that science will advance to the point that there will be other medical options for him. That being said, we've found that getting back to a normal routine as quickly as possible has been tremendously helpful.

  9. #9
    Quote Originally Posted by LIP26 View Post
    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    My names Jacob. I saw your questions and wanted to give my 2 cents. I went to in-patient rehab for 30 days at Jackson Memorial Hospital in Miami, FL. The day I arrived I could barely move anything. The day I left my hips were stronger, but still extremely far from good. I tried massage therapy, but the costs can add up, so I now go periodically. Never tried acupuncture, although I'm very interested in the idea. I was injured in 1999, so 13 years ago, at the age of 16. Over the first 3-5 years I was able to regain enough strength for a KAFO (long leg brace) on my left leg and a AFO (ankle brace) on my right. I had to use crutches, and couldn't walk long distances. I eventually realized I wasn't getting anymore strength back, and that was a hard pill to swallow. There's no set time as to when you should or shouldn't accept your injury, no right or wrong. When I feel depressed I try to do something, anything, that empowers me. Maybe a handbike ride, or maybe just go for a stroll around the neighborhood. Also, sometimes it's difficult for your able-bodied friends to relate to what you're going through. So, although they are there to listen to your problems, they can't relate to the pain you're going through.. So sometimes I'll go to a local SCI support group in Miami, FL. It took me over 10 years to start surrounding myself with other people in wheelchairs... Don't make the same mistake.

    After how long should one take to accept its time to get on with ones life? That's an interesting question. There's no set time. Every person reacts differently. It's important to remember, "accepting and moving on" doesn't have to mean you've given up on your recovery. You can accept and move on with your life, while always working on your recovery program.

    Just my 2 cents. I'll stop rambling. PM if you have any questions.
    "Be stronger than all your excuses...."

  10. #10
    Quote Originally Posted by LIP26 View Post
    Where were u at/what could u do before you started rehab?
    How long after could u walk it at all if able?
    How long did u have PT?
    Did u try massage therapy? Acupuncture?
    How fully did u recover/what didnt come back?
    What was ur injury?
    What do u do when u feel like its too much, when u feel stuck or ur recovery plateus?
    Who, in ur life, do u depend on, if anyone, for help and assistance?
    After how long should one take to accept that its time to get on with ones life?
    1. It's been more of a continuum, but here are the early milestones: I took two steps in the parallel bars (but not touching them) with a KAFO on my left leg and no assistance after about three weeks or so, and I could just barely walk back and forth across a living room with only an AFO after about four months (it looked like I was trying to walk on a tightrope). I could do about two hundred feet with a walker and a KAFO at the month mark, I could walk about two hundred with a KAFO and crutches after about seven weeks, and then I could walk about two hundred feet with an AFO and crutches after about nine weeks. I could walk half a mile on a frisbee golf course with crutches/AFO by 11 weeks, and I was using a mix of crutches, single crutch and cane until a bit past the two year mark.

    2. Five weeks of PT in the hospital, maybe seven outpatient visits and then I gave up on it entirely.

    3. Nope - no massage therapy or acupuncture.

    4. I can walk a few miles unaided without much of a limp (or at least I've gotten to a point where new people I meet seem to not ask me about it anymore and are surprised when they find out). I could walk further, but it starts to get ugly and at that point it is better to take my collapsible cane out of my backpack. I do a lot of backpacking and long distance hiking, and I use fancy crutches for that (Sidestix). I still have foot drop and wear an AFO on my left foot, and my bladder doesn't work at all. Sensation-wise everything is normal to the best of my recollection, except that I have slightly fuzzy feet and I can't feel a big chunk of my right shin at all.

    5. Burst fracture of the L2, five level fusion with a cage, etc... My right leg could twitch weakly like a dying fish within a week of injury, and sensation was either nonexistent or phantom limb-ish for a good while after that.

    6. I usually go on a long aggressive night bike ride to rid myself of any post injury angst, and the best way I've found to punch through plateaus is to take on a new challenge and then make that challenge the new norm. If I can go through a day with crutches, cut it down to a single crutch. Once one crutch is normal, use a cane. The trick is to be somewhat foolish and take on a bit more than you can chew and then be forced to rise to the occasion.

    7. I don't need any special assistance.

    8. The earlier the better, but it's pretty damn hard. I found that distracting myself was far more achievable than acceptance, and eventually acceptance just kinda happened on its own.
    L2 incomplete with a pretty bad limp since 10/31/2011.

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