Announcement

Collapse
No announcement yet.

Am I the only one...?

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

    Am I the only one...?

    Hi everyone,

    I'm just curious. Am I the only one who is tired-down-frustrated-desperate... to see all those news about cure everywhere around the world but still nothing real so far for us who are waiting for cure for more than 10 years?
    I believed for a long time that cure will come for me but today I'm giving up on this
    It's sad but after 14 years post quad c4, it's tough to keep spirit on hi-level.
    One day at a time til...

    Sorry for my negative comment

    Steve

    #2
    Originally posted by Steve
    Hi everyone,

    I'm just curious. Am I the only one who is tired-down-frustrated-desperate... to see all those news about cure everywhere around the world but still nothing real so far for us who are waiting for cure for more than 10 years?
    I believed for a long time that cure will come for me but today I'm giving up on this
    It's sad but after 14 years post quad c4, it's tough to keep spirit on hi-level.
    One day at a time til...

    Sorry for my negative comment

    Steve
    ofcourse not your not the only one. everyday we suffer from more frustration and pain than an AB does all year. we could have been cured long ago but for the myth so popular among polticans, scientist, and the general population that sci equates to happy jolly life. hang in there. later this year i will be making my 20th year at c4-c5. the goodnews is you will not have to make your 20th.

    Comment


      #3
      Originally posted by DA
      the goodnews is you will not have to make your 20th.
      If this were the case, that would mean effective chronic therapies would be solidly in late Phase I, early Phase II clinical trials.

      No offense DA, but your predictions in the past ain't been in the ball park.
      Last edited by Schmeky; 11 Mar 2006, 8:24 PM.

      Comment


        #4
        i am only1year 7months post and i am so depress sitting in this chair.i wonder how you guys have done 20years plus and are still positive about a cure.

        Comment


          #5
          I hear yea. I'm burned out myself!
          "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

          -Christopher Reeve on his Paralysis

          Comment


            #6
            I had to severely lower the expectations over 20yrs .. not going to walk. Hope to have bladder/bowel or maybe some sensation return.

            I think of how that would improve my life today.
            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

            Comment


              #7
              Originally posted by DA
              ofcourse not your not the only one. everyday we suffer from more frustration and pain than an AB does all year. we could have been cured long ago but for the myth so popular among polticans, scientist, and the general population that sci equates to happy jolly life. hang in there. later this year i will be making my 20th year at c4-c5. the goodnews is you will not have to make your 20th.
              DA,

              you are great, this site definitly needs you!
              In God we trust; all others bring data. - Edwards Deming

              Comment


                #8
                Originally posted by Schmeky
                If this were the case, that would mean effective chronic therapies would be solidly in late Phase I, early Phase II clinical trials.

                No offense DA, but your predictions in that past ain't been in the ball park.
                my predictions were based on the science. the science of a cure for sci says a basic cure exist. that means therapies that would allow a c4 complete quad to kick his foot or wiggle a toe. the delays is nothing more than money; insurance money, hospital money, material money, etc etc... remember, they don't treat sci the same as cancer. we have 10 times more paper work and need 10 times more money and 10 times more "get off your ass" convincing resulting in 10 times more delays.

                Comment


                  #9
                  We are injured in wrong time, maybe in 20 years SCI people have more luck.
                  -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

                  -Hoc non pereo habebo fortior me

                  Comment


                    #10
                    What RRREEEAAAAALYYYY upsets me are researchers who say they have come up with a cure or partial cure, only to be found out as fraud. Now, here is everyone all expecting something, and excited, and looking into the "new rerearch" only to find out that the data has been faulsified!!! That is a genuine gut wrencher! What kind of pig (remember that Korean scientist that was charged with fraud, saying he had found eveidence that a cure was coming really soon) would mess with people like that.

                    Honestly, its bad enough to have to deal with the injuries and all, but to be given false hope, and be lied to is worse, far worse. Its like you have real hope then someone punches you right in the gut!!
                    Disability is not a medical problem with social issues, but rather a social problem with medical issues.
                    Franklin D. Rosevelt

                    Comment


                      #11
                      Originally posted by DA
                      my predictions were based on the science. the science of a cure for sci says a basic cure exist. that means therapies that would allow a c4 complete quad to kick his foot or wiggle a toe. the delays is nothing more than money; insurance money, hospital money, material money, etc etc... remember, they don't treat sci the same as cancer. we have 10 times more paper work and need 10 times more money and 10 times more "get off your ass" convincing resulting in 10 times more delays.
                      I'm going on 30 years. The one thing you can count on is "a therapy" just over the near horizon. I've heard promising news for 25 of those 30 years. While I do believe the horizon is much shorter than it once was and scientist are eager to find the cure ... DA is absolutely correct on this point.


                      The March of Dimes has switched from juvenile paralysis to birth defects. The more birth defects they fix, the smaller still the birth weights. It is a never ending loop. FDR wasn't bitchin' about juveniles, it was the paralysis. For some reason that got lost and that's the kind of money that makes a difference.

                      Until the day that research from "where ever" actually pays off, be sure not one of us hasn't had our moments.

                      "If I just had one hand.."

                      Comment


                        #12
                        wow 30 years holy smoke mingo,how do you cope so long with this shit?everyday is like a torture for me,i respect you man

                        Comment


                          #13
                          Steve,
                          Originally posted by Steve
                          Hi everyone,

                          I'm just curious. Am I the only one who is tired-down-frustrated-desperate... to see all those news about cure everywhere around the world but still nothing real so far for us who are waiting for cure for more than 10 years?
                          I believed for a long time that cure will come for me but today I'm giving up on this
                          It's sad but after 14 years post quad c4, it's tough to keep spirit on hi-level.
                          One day at a time til...

                          Sorry for my negative comment

                          Steve
                          I can identify with your "tired-down-frustrated-desperate" feelings and I wish there was a cure tomorrow -- no, let me rephrase that, TODAY!
                          Following the Second World War, many Canadian veterans returned home wounded and disabled. The available hospital services were inadequate for their needs. Lyndhurst Lodge opened in 1945 to help fill this gap for servicemen who had suffered spinal cord injuries. Located on Lyndhurst Avenue in Toronto, near Casa Loma, it soon became a nationally and globally renowned hospital.

                          Dr. Albin T. Jousse, an internationally respected Canadian physiatrist, became its first medical director and set it on its pioneering course. Dr. Jousse received the Order of Canada in 1969 in recognition of his notable work.

                          The Canadian Paraplegic Association, an organization formed in 1945 by paraplegic veterans, assumed the facility's ownership in 1950 and, in 1974, built a new, larger facility at the present location at 520 Sutherland Drive.

                          SOURCE: http://www.torontorehab.on.ca/patien...spinal-his.htm
                          It is my understanding that an important turning point happened post WWII.
                          8. Do people with SCI die sooner?
                          Before World War II, most people who sustained SCI died within weeks of their injury due to urinary dysfunction, respiratory infection or bedsores. With the advent of modern antibiotics, modern materials such as plastics and latex, and better procedures for dealing with the everyday issues of living with SCI, many people approach the lifespan of non-disabled individuals. Interestingly, other than level of injury, the type of rehab facility used is the greatest indicator of long-term survival. This illustrates the importance of and the difference made by going to a facility that specializes in SCI. People who use vents are at some increased danger of dying from pneumonia or respiratory infection, but modern technology is improving in that area as well. Pressure sores are another common cause of hospitalization, and if not treated - death.

                          SOURCE:http://www.sci-info-pages.com/factsheets.html
                          Toward the end of World War II the acute mortality rate from SCI reportedly declined to approximately 20% (Poer, 1946; Barber & Cross, 1952). Whiteneck et al. (1992) contrast the median survival for those injured during the 1940's (26 years) with those injured in the 1960's (33 years). These changes were reported to be largely due to the availability of penicillin, sulfa drugs and whole blood (DeVivo et al., 1987).

                          SOURCE: http://www.nisu.flinders.edu.au/pubs...-Survival.html
                          I'm just as impatient!, after almost 12 years in my chair. I haven't stopped living, new opportunities have presented themselves that would have otherwise not -- off course if SCI hadn't happened opportunities would still have presented themselves, just different ones and I will never know what they were. To ponder on that is a waste of time, ...may as well concentrate on the business at hand.

                          Cheers!
                          Han Tacoma

                          ~ Artificial Intelligence is better than none! ~

                          Comment


                            #14
                            I agree with Wcrabtex except I believe that we are also working for ourselves. Yes, I get discouraged but I continue to push and work for the cure in any way I can. Educating others is ne of my key efforts.

                            I am 15 years post, and I feel age setting in, never the less I hold on to hope.
                            Every day I wake up is a good one

                            Comment


                              #15
                              Originally posted by wcrabtex
                              I think within 10-15 years there will be effective therapies for acute injuries and eventually for chronics. Unfortunately, SCI is a very difficult problem, research takes a long time and funding for SCI research is woefully inadequate. It is very difficult to accept, but we are are really working for the next generation.

                              WCR
                              WHO IS WE?

                              Comment

                              Working...
                              X