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    BirdeR,


    In November you mentioned that Jim was changing to the sustained release 4AP and would take 3 15mg caps a day instead of two mg caps 5 x a day.

    I just wondered if the change to the sustained release 4AP made any difference? How big is Jim by weight? The pharmacists at the pharmacy where I tried 4Ap had a formula for giving 4AP and I remember it was by weight. I weigh maybe 145-150 lbs and was up to 45 mg a day. I believe I had some benefit but not enough to make a difference in my own daily living. Some small strengthening of my hand and fingers, a little better motility and bowel management. Hope Jim continues to see some benefit from his surgery

    Joe B
    C6-7
    1988
    Joe B
    C6-7
    1988

    Comment


      it sounds like jim is doing great,i am jealous,no urinating on my own or ejaculations....maybe because i am a higher level and complete.how does jim get on a tractor,backhoe,etc.and what has he done to adapt them so he does not need the clutch.which 4 wheeler is he driving

      Comment


        hi there jim,it sound's like your feeling fine,that's good.I to had the surgery and feel fine.Can i ask if any feeling has started to come back below the injury?i know how dr.young said it come's back like hair would grow.Do you do the excercise's every day?do you feel like the exercise program has made an difference?and if the censory does'nt come back,how can the program make a difference?beside's keeping you in a little beter shape,maybe you can help me with that one dr.young?good luck jim

        Comment


          Is there hope?

          I'm a T-10 complete and I would like to live with at least a ray of hope. But I frequently notice that those whom Dr. Kao has operated on are incompletes. Does that mean there's no hope for me? Some bone shards from my vertabra lodged in my spinal column. My lesion is described as a burst. I was injured March 10, 2000 and do not have feeling or voluntary movement below my injury level (thus I'm complete).

          Has Dr. Kao done procedures on complete injuries? I welcome all replies. Be straight with me. I don't think I'll get anything back. However, I'm not asking for much. It would be great to get some bowel, bladder or feeling back. I've been having problems with bladder accidents.

          Of course, my dreams would be practifully be fulfilled if I could experience ejaculation again.

          I will have the money to pay for a Kao procedure. But is this a pipe dream? Your friend, Scribe

          Comment


            Is there hope?

            I'm a T-10 complete and I would like to live with at least a ray of hope. But I frequently notice that those whom Dr. Kao has operated on are incompletes. Does that mean there's no hope for me? Some bone shards from my vertabra lodged in my spinal column. My lesion is described as a burst. I was injured March 10, 2000 and do not have feeling or voluntary movement below my injury level (thus I'm complete).

            Has Dr. Kao done procedures on complete injuries? I welcome all replies. Be straight with me. No hope is better than false hope. I don't think I'll get anything back. However, I'm not asking for much. It would be great to get some bowel, bladder or feeling back. I've been having problems with bladder accidents.

            Of course, my dreams would be practifully be fulfilled if I could experience ejaculation again.

            I will have the money to pay for a Kao procedure. But is this a pipe dream? Your friend, Scribe

            Comment


              Gosh Yes

              Of course you have hope it may or may not be with Kao. I'm a c4/5 since 76 and am sure that sooner rather than later I'll be at least a para and anything beyond thats gravy. Keep your body in shape and hey maybe invest that money in one of these companies that's going to pop when the first break through comes. Then later you can buy me a Bud light. [img]/forum/images/smilies/smile.gif[/img]

              For what its worth,

              Leo
              http://justadollarplease.org/

              2010 SCINet Clinical Trial Support Squad Member

              "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

              .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

              Comment


                surgery

                Many of his patients are complete. After the surgery Dr. Kao referes to them as incomplete, because many, but not, all have some significant recovery. Remember this is not a cure!

                JJG [img]/forum/images/smilies/smile.gif[/img]
                Jake's Pop

                Comment


                  Sexual cure

                  Are there any completes out there who can feel their ejaculations? Are there any who have gotten back any bowel or bladder control?

                  Are there other procedures being performed besides Dr. Kao's?

                  Comment


                    Originally posted by Scribe:



                    Are there other procedures being performed besides Dr. Kao's?

                    Scribe, go to the Trials Forum, Dr. Young lists all the treatments and clinical trials available for chronic and acute SCI.

                    Comment


                      Thanks

                      Seneca, thanks for the tip. I especially appreciate SPIs willing to help others. Keep caring and sharing

                      Comment


                        Scribe,

                        I'm a T12 COMPLETE who is planning on having the surgery and happens to live nearby. Give me a call and I'll fill you in on everything. I'm trying to schedule in March. By the way, I read that Dr. Kao has had the greatest success with lower thorasic and lumber injuries (although this information was quite old - don't know if it still applies). Being a complete injury 21 years post, this will be a true test. I have a real good feeling about it.

                        Jan

                        Comment


                          Good to hear from you

                          Jan, it's nice to hear from you again. I'll give you a call. As you know, I'm keenly interested in your procedure with Dr. Kao. You should do well with your intelligence, emotional strength and great physical condition. You put me to shame. I haven't taken good care of myself since I left the hospital in July 2000.

                          Keep us informed with your messages. Scribe

                          Comment


                            Scibe,

                            Don't put yourself down. There is a huge difference between 21 years post and 1+. It can take years to pull yourself together after such a horrific blow. Your on track...keep the Faith!! Life goes on and it WILL get better.

                            Comment


                              Thanks

                              Thanks, Jan. I've always been too hard on myself but I've never been been able to shake this personality defect.

                              Comment


                                Barbara called our house this past Friday when I was gone and spoke with Jim - she was calling to confirm her staying with us from Monday to Wednesday. Monday morning we headed to Waukesha, WI to see the Hammer clinic, meet
                                Kathy Hammer, Barbara, and believe it or not 7 other Wisconsin "past Kao patients". You should all know that there are 31 past Kao patients in
                                Wisconsin alone. Texas has the most and we are next. The clinic opened about 3 weeks ago and they are still waiting for all the equipment
                                to arrive. We were all there to see the "walking machine" and to try it out. You don't use the "Kao boots" -or- as Jim likes to call them
                                the "magic boots" on this equipment as they are too heavy. High top shoes are best (for ankle support). Jim was the last to use this machine which was great because we could watch everyone else do it first. I am sold, as is Barbara!!! This is a wonderous machine and with the
                                proper use and schedual this may be better then the invention of sliced bread!!!!! Everyone loved it!!! I think we scared poor Kathy Hammer the PT with our group!!! Jim who is so very skeptical about everything and anything actualy liked this as well. Jim was great!!! His legs actualy knew what they were suposed to do or so it would seem (one right in front of the other, knees bending with each step....)!!!!
                                Kathy Hammer has a list of the places around North America that have this machine (http://www.jsonline.com/alive/news/jan02/10474.asp) and will share it with all of you I am sure. I do know there is one in Mississippi (the closest one to Alabama) and that there is one in the Washington D.C. area. We were told that 2-3 times a week is the max. to use this and the session itself is about 5-10 minutes long-or at least it was that long the day we did it.
                                Everyone that was there on Monday had leg and/or feet sensations
                                after using it. It is quite the work out, you work a sweat up!!!
                                This is not only for para's-quads can and did use this as well. I am told
                                that a quad may actually bennifit quicker from this. One particular
                                fellow that used this machine 2 times already had feelings in his
                                legs for the first time in 5 years that lasted just over 8 hours!!!
                                Next Jim used a bike-like thingy (I think it's the NUSTEP) and can be
                                seen at http://www.nustep.com/smart/media/photos.html I'll check into that- any way Jim again was
                                the last to use this and he did not have to have his feet or knees strapped in
                                like the rest of the people-his legs just
                                peddled!!!!!!!! First he used the arm bars that move your legs...and
                                they asked him to just do it with his legs and not his arms to
                                help...he said "you're kidding me , right?" but he tried and.....HE
                                COULD DO IT!!!!!!!!!! Barbara was amazed!!! He could not do it
                                easily...it took alot of effort but he did it a couple of times!!!
                                Barbara came home with us and stayed until this morning when we took her to the Green Bay area to meet another patient. She worked
                                Jim so hard-and he needed it!! He used the boots and the walker. The
                                walker was way too high for him so she marked it and Jim took it out
                                to the garage and cut it down. She taught Jim how to use the walker
                                and he can now stand with it. He can get from a sitting position (in
                                a chair) and get up to the walker and get balanced, lock the knees
                                in, and hardly hold on with his hands and it's a miracle!!!!!!!! We
                                went in the kitchen, as carpet is hard to work on and the kitchen has
                                vinyl floor. He got up to the walker and he took 6 steps with it and
                                Barbara in front to help move the walker, and our son behind Jim in
                                case he fell and me videoing this all!!!!!!!!! PEOPLE- HE TOOK 6
                                BABY STEPS!!!!!!!!!!!!! I was crying!!!!!!!!!!!!! Barbara was
                                cheering!!!! OUR KIDS WERE SPEECHLES!!!!!!! JIM WAS SCARED AND
                                DRAINED!!!!!!!!! His legs have been tingling and surging with an
                                energy he has never felt before!!! His legs want to move, they do
                                move when he stands, they want to walk!!!!!!!! THEY SEEM TO REMEMBER
                                WHAT THEY ARE SUPOSED TO DO!!!!!!!!!! Can this be? Barbara said
                                that if Jim does this every day, he WILL be walking by summer to some
                                degree!!!!!!!!! We are going to call Kathy Hammer and see when we can get in to her clinic again. It is about 1 hour and 20 minutes
                                from our home and 10 minutes from my moms home. I have all the
                                literature and a CD about this machine. Kathy Hammer can also help with
                                information!!!!! Jim is out in the living room right now standing
                                and sitting with his boots and walker...he says it hurts his stomach
                                more then a sit-up!!! HE FEELS HIS STOMACH!!!!!!!!!!!!!! More to
                                come later!!!!!!!!!!! Robin
                                *************By the way Jim stopped taking the 4-AP about 2 weeks ago and is done taking the other medications prescribed by Kao as well. He only had to take those for 6 months and this month is 6 months since he had the Kao operation. We are looking into a herbologist that helped a friend that is about the same level as Jim and also had the Kao operation just before Jim did. He does not have to cath any more as he can urinate on his own and has been since before Kao's operation. We will let you all know what we here.

                                [This message was edited by BirdeR on February 13, 2002 at 10:23 PM.]

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