How much longer?

[Nicksdad]

We keep on talking about stem cells, cord blood, all the money going into private funding, clinical trials going on, lots of things happening. When are we going to hear the magic words that they can repair sci??? And getting to be too much like work to stay in shape & expensive. Well any positive thoughts would be appreciated.

I am sure most everyone has a love-hate relationship with this web site… come here a little excited for any good news, a lot disappointed when we notice how much time we blew surfing for nothing. Then every once in a while someone, usually Dr. Wise, writes something that truly gives near-future hope. I choose to not believe it’s going to take 10 more years, I choose to believe that there will be some success in current trials, and the planned upcoming trials, this “ball” is actually rolling. It’s a belief that does not interfere with being productive, or living. It’s the wheelchair and dependency that interferes with living. I have fired all the OTs that have tried to discourage me from believing in a cure or given me that “be the next great american novelist” crap. When you wrote the question, was it the lack of finding the cure here that pissed you off, or was it the amount time you wasted on a fruitless adventure, time you could have added to your workout routine? This probably doesn’t fit in the “positive thought” category, consider it to be a rhetorical question.

[patricks]

All Hail Mighty King Bush the 2nd!!!

[KIM]

In my opinion it will take 2 more years till we something coming that is really promising.

[DA]

Ask DA. I think he promised us May of 2005.

the technology and know how already exist to regenerate the spinal cord to a point whereas a dependent quad would become independent. the sci community is too busy being stupid to demand the human application of these therapies.

[IanTPoulter]

the technology and know how already exist to regenerate the spinal cord to a point whereas a dependent quad would become independent. the sci community is too busy being stupid to demand the human application of these therapies.

I agree. (not about the stupid part though, maybe fragmented would be a better word) I also dont understand how anyone can speculate as to specific timelines. As Dr Young has pointed out more than once I believe an effective function restoring treatment may be individual to the person and their specific type of injury. There may be treatments that will restore function for some but not others, remyelination may work for some but not others. Some treatments now being trialled for acute injuries may possibly work for chronics. Complete para injuries may have to take a different approach than complete quad injuries. I have heard this 10 year/20 year prediction stuff from enough members of the medical profession many of whom have far less knowledge of what constitutes a sci than many lay people on this board. Its a crock, the sooner we get together and recognise that waiting for a magic wand is not going to happen the sooner treatments will be available. (sorry Wrcrabtex, this is not aimed at you)

[DA]

no ian, stupid is the word. we all want a cure but we as a group dont take the time to understand the science. this forum use to talk about every corner of research. now it is a "give me stem cell only" cure forum.

[Schmeky]

The reason I believe the timelines I suggested are reasonable is because of the length of time it takes to take drugs and procedure oriented therapies through clinical trials

In the USA this is right. There is currently no funding and no real clinical trial infrastructure. How could a "cure" reasonably occur any sooner?

Not negative, just the reality our situation in the USA.

[smirking1]

I don't understand why a rat can recover but I can't. I am a republican but I will be glad when this president leaves and is replaced by someone who will let stem cell technology go forward. I honestly believe that I may not get to see a full recovery in my lifetime, but by letting things go forward, my children will never have to sit in a a GD wheelchair and live like this. I'm not complaining that my life is bad but it would be a whole lot better if i could walk,control my bladder and bowel movements, have a normal sex life.....etc. etc.

[patricks]

Although Everday is a living Hell, Much prefer a Cure for cancer Over SCI.

[DA]

enough said...my points exactly.

[Dann21]

Although Everday is a living Hell, Much prefer a Cure for cancer Over SCI.

maybe I'm a little selfish when I say this, but speaking as a complete quadriplegic I would much rather have cancer than be a quadriplegic. If you have cancer you at least have a chance of getting better. To me, being a quadriplegic is hell. It took away my high school years college years, favorite hobby, privacy, independence, self-confidence, and relationship life. Not only is it bad enough that it affects you, but it affects your whole family as well. Everyone's lives have changed. It has robbed me of everything, and left me with little.

To me quadriplegia is just a prolonged death sentence with little enjoyment. The worst part isn't for me though... it's living with the fact that my parents have had to change their lives 180° in order to care for me. I feel much worse for them than I do for myself. They take great care of me, but I wish I could give them their lives back. I wish this injury never happened. It robs me of the most important thing to me... marriage and having a family and has left me with the guilt of transforming my family's life.

I'd much rather try beating the odds of having cancer or die than live with the guilt I have of being dependent upon others, transforming their lives, and living my life out like this.

[zoki83]

Everyone's lives have changed. It has robbed me of everything, and left me with little.

I think about this all the time and think about even if or when a cure does come, how shall we all be psychologically, as then we will all have to deal with the fact that we were robbed of so many years of our life with this injury, and for most of us they are our good years.

[IanTPoulter]

now it is a "give me stem cell only" cure forum.

I agree that many people think the only opportunity for effective treatment lies with stem cells and also that "stem cell only" thinking has blinded many to the possibility of other avenues. I dont agree that this is the case on this forum, our obstacle the way I view it is to educate the general public into understanding that a cure is possible and that the technology for a cure already exists. It is the general public who need to get on the side of a cure and ask why governments are not contributing more towards providing treatments instead of pushing people with sci into the too hard basket.
We can blame the media partially for the stem cell overhype, they have talked up stem cell research to the point where many people think the only obstacle is raising enough money to travel overseas to get cured. If we are waiting for stem cells alone to provide a cure I think the reality is decades away.

[Wise Young]

maybe I'm a little selfish when I say this, but speaking as a complete quadriplegic I would much rather have cancer than be a quadriplegic. If you have cancer you at least have a chance of getting better. To me, being a quadriplegic is hell. It took away my high school years college years, favorite hobby, privacy, independence, self-confidence, and relationship life. Not only is it bad enough that it affects you, but it affects your whole family as well. Everyone's lives have changed. It has robbed me of everything, and left me with little.

To me quadriplegia is just a prolonged death sentence with little enjoyment. The worst part isn't for me though... it's living with the fact that my parents have had to change their lives 180° in order to care for me. I feel much worse for them than I do for myself. They take great care of me, but I wish I could give them their lives back. I wish this injury never happened. It robs me of the most important thing to me... marriage and having a family and has left me with the guilt of transforming my family's life.

I'd much rather try beating the odds of having cancer or die than live with the guilt I have of being dependent upon others, transforming their lives, and living my life out like this.

Dann21,

In the last three years, my brother, my best friend, and Dana Reeve died of colon, gallbladder, and lung cancer respectively. It broke my heart watching them die, with no hope.

Do not feel guilty about your dependence. I of course cannot speak for your family but I suspect that they love you very much. A cure for spinal cord injury is not only for you but for them.

Wise.

[IanTPoulter]

Although Everday is a living Hell, Much prefer a Cure for cancer Over SCI.

There are cures for certain types of cancers, why should there also not be cures for certain types of sci?