I want combo trials, and now!!

[Wise Young]

mindset

Cass,

I have a really bad pressure sore, been battling for a year. 2 botched surgeries; I lay in bed and drain wound fluids on an absorbent pad 24/7 and will be like this for some time. I can't even leave my bedroom, so I lay in this mess, missing family functions, lost a great career, yada, yada.

In this condition, my minset is not as good as it should be and I don't want my condition to overtly influence my attitude. However, what I can't tolerate, no matter what my condition, is people calling me lazy, and not cure oriented. I still support the clinical trials with a monthly donation, it's all I can do, but I do it, and I'll continue until I'm broke or dead, whichever comes first.

Paolo,

That drink idea is the best advice I've had in a long time

Oh, Schmeky, I am so sorry to hear that you are down for so long with a pressure sore. I want to tell you that I am personally grateful for all your support over the years. You of all people should not be a subject of the "lazy butt" epithet.

I agree with you that calling others "lazy butt" is offensive. It provokes anger and divides the community into those who think that the name is being aimed at them and those that don't. Unfortunately, it has already driven some people, not just out of the discussion but away from CareCure. That is unacceptable. Nobody should be calling other people a "lazy butt" for complaining about the lack of progress in the field.

On the other hand, some of the naysaying is also offensive. For example, to claim repeatly that we have had no progress to people working hard for the cure is just as nasty as blaming the lack of progress on "lazy butts". To come to the Cure Forum and to say to people who are working their butts off for the cure that there will never be a cure is tantamount to making a personal attack on the aspiration of those people.

Wise.

[keeping on]

Schmeky, I can only offer hope that treatments are near that will allow improvement. I say this for you and for all of us. We must keep talkinjg to eachother and benfit from what's to come.

T.J.

[Schmeky]

Thank you all for the encouragement. I should heal over time and hopefully bounce back; where I'll bounce to is unknown

We're all in this together.

[smokymtn memories]

I have no idea why I'm doing this, but, I just can't believe Lynnifer has left us because there are a few among us foolish enough to accuse her of being a "lazy butt"! This young woman has been sci for most of her life and worked hard, harder than most at building a life with sci and fighting for a cure. She's donated much of her free time as moderator and done a pretty good job too. How many of us can hold our tempers in check and do the job the moderators have to do?

I, for one, am very grateful for the time they put in. Betheny is another that has given freely of her time and knowledge. There are so many that give so freely.....Dr. Young, Cheesecake, Obie, Steven, Jim, and many more.

Yes, there are some that are negative, and I'm sure for many different reasons. Some have played this tune for so long, they're tired.....maybe just need a rest.....things are getting them down in other areas of their lives. Can we not just have a little empathy for those we know that have worked so hard. It can hit hard those that have been sci for sooo many years and thought for sure, by now, the cure! And yet, as hard as some have worked for it, not yet.

CC is what it is, and I'm glad it isn't a political forum. That's not why I came here or why I stay. I came for answers about my sci. I had questions my doctors could'nt answer clearly enough for me to understand what had happened to my body. Mention AD to most doctors or nurses and they look at you like you grew another nose. I've even had people in the medical field tell me I'm wrong, I'm not an incomplete quad. They never heard of it, I would'nt be able to move if I were a quad.

By all means, use CC with Wise's permission, to recruit people to a site designed to fight for the cure! I'll go to it, whether or not they ever come up with something to help me, well I hope so, but if not maybe the next generation. I agree we must make some noise. But, I don't think insulting those with doubts is a good way to go about trying to receive help of money or political clout.

[cass]

Cass,

I have a really bad pressure sore, been battling for a year. 2 botched surgeries; I lay in bed and drain wound fluids on an absorbent pad 24/7 and will be like this for some time. I can't even leave my bedroom, so I lay in this mess, missing family functions, lost a great career, yada, yada.

In this condition, my minset is not as good as it should be and I don't want my condition to overtly influence my attitude. However, what I can't tolerate, no matter what my condition, is people calling me lazy, and not cure oriented. I still support the clinical trials with a monthly donation, it's all I can do, but I do it, and I'll continue until I'm broke or dead, whichever comes first.

Paolo,

That drink idea is the best advice I've had in a long time

I agree! and, i'm so sorry for all this crap you're dealing with. this is exactly why the "lazy butt" comment was so offensive. i hope things improve for you soon

[swh2007]

So I read about 20 pages of posts since we got on the subject of what people want the CC memberhip to accomplish and how they should do it. About 18 different "how to" items were listed. The most commonly cited "how to" item (5 people) was to tell politicians that the SCI community cares about a cure and clinical trials. I'll take another day or two to try to figure out the overlaps and boil it down to the top 5 "how to" items. It's impossible to tell whether the number one goal is a "cure" or "clinical trials."

I wanted to mention now, however, that there were far and away more positive than negative comments and that it just took a few negative comments to throw the whole thread into a hailstorm of various protests and rants. For example, while the lazy butt comment was made once and then seconded by a ditto, I couldn't find anywhere where there was a younger SCI saying that the old timers were lazy butts and should be ignored, etc.. Maybe I missed it but my perception is that the thread busted into war mode on the basis of old wounds and long held perceptions or mis-conceptions. I think I am far to new to CC to understand all of the history that seems to as much split us apart as to bind us together.

But I've been divorced twice after long term marriages so I get the drift generally at least.....PS that's just me laughing at myself for failing to understand CC sometimes.

[swh2007]

Summary of Last 20 pages of this thread:

Here are the action items that CC members thought the the CC members should take and the number of times the items were mentioned. Most people mentioned more than one item. Not many people participated (I did not count the people).

1. Tell policiticians that they care about a cure and clinical trials (5)
2. Raise money for cure research and trials (4)
3. Network within the research community and participate (3)
4. Encourage collaboration in CC member efforts and/or in medical research (4)
5. Unite SCI community to act on cure efforts (2)
6. Create closed forum on CC for those interested in cure efforts (2)
7. Encourage young scientists b/c current scientist in 50s (1)
8. Create a separate CC fund to create lobby effort (1)
9. Comment on scientific articles (1)
10. Organize DC and/or European rallies and lobby efforts (4)
11. Join forces with other SCI organizations (1)
12. Train advocates
13. Meet with legislators in their local offices (1)
14. Organize CC membership for cure efforts (1)
15. Focus on clinical trials for today's member specifically (3)
16. CC outreach aimed at new SCIs (3)
17. Create mandatory CC fee for trials (3)
18. Get Cc members to collectively focus on trials (3)

Thank you, Steve

[swh2007]

You can just click here and edit your sig.

Edit signature

PS I think it's under there now but I'm not sure how it got there. I played around with it but didn't think I figured it out.

[paolocipolla]

Summary of Last 20 pages of this thread:

Here are the action items that CC members thought the the CC members should take and the number of times the items were mentioned. Most people mentioned more than one item. Not many people participated (I did not count the people).

1. Tell policiticians that they care about a cure and clinical trials (5)
2. Raise money for cure research and trials (4)
3. Network within the research community and participate (3)
4. Encourage collaboration in CC member efforts and/or in medical research (4)
5. Unite SCI community to act on cure efforts (2)
6. Create closed forum on CC for those interested in cure efforts (2)
7. Encourage young scientists b/c current scientist in 50s (1)
8. Create a separate CC fund to create lobby effort (1)
9. Comment on scientific articles (1)
10. Organize DC and/or European rallies and lobby efforts (4)
11. Join forces with other SCI organizations (1)
12. Train advocates
13. Meet with legislators in their local offices (1)
14. Organize CC membership for cure efforts (1)
15. Focus on clinical trials for today's member specifically (3)
16. CC outreach aimed at new SCIs (3)
17. Create mandatory CC fee for trials (3)
18. Get Cc members to collectively focus on trials (3)

Thank you, Steve

Interesting indeed, but here is my approach to the situation:

1)What do we need to accelerate the cure? Founding for research & clinical trials….
2) What could potentially the CC community do? Raise the $ we need ourselves, advocacy, lobby….
3) What are the conditions we need to make the CC com. produce 100% of its potential? Have a clear common & realistic goal/s….. (here I think you have just provided some ideas).....
4)What has the CC com. done in the past? Rally to D.C., CDRPA…………
5)What is it doing now? What I see are just scattered weak actions… Individual actions by a few CC members seem to be more effective at the moment
6)What can we realistically expect the CC com. can do in the future? This is related to the answer at the question #3.

I think until we don't have a clear & strong evidence of recovery on human chronic SCI the CC com. will not get together & work together (& that condition mat not be enough), so it is far more effective to organize small task forces focusing on a specific goal.


If anybody has an answer/comment to any of the above questions please post.


Paolo

[nrf]

DA,

What lies?

I apologize if I have miscontrued your positions but I don't think that I have mischaracterized them. The choice in 2004 was clear. Bush was going to continue his policies restricting stem cell research and withholding funding for paralysis research. Kerry strongly supported stem cell and spinal cord injury research. You chose Bush over Kerry. If that is not so, please say so because this is not clear from your posts.

Please also correct me if I have misconstrued your position on NIH. It seems to me that you strongly oppose increasing funding for NIH, implying that you don't think that the spinal cord injury community should be lobbying Congress for more funding for NIH through CRDPA. Again, if this not so, please enlighten me.

Finally, I did not say or imply that "there is no cure because of DA." I have said that Bush policies contributed to the lack of funding for stem cell and spinal cord injury research funding. I have also said that I believe that if the community does not tell their representatives in Congress that spinal cord injury research and clinical trials is important to them, they will not fund such research.

Wise.

Have the democrats been an improvement yet?

[blairc7]

Have the democrats been an improvement yet?

democrats have and always been the problem and the people that fail to see that

[paolocipolla]

that is just a flat out lie. why do you have to lie?
i wonder what else you would lie about.

i made it clear plenty of times i didnt support bush on restricting esc. i posted many things i disagreed with bush. but because i supported some of bush policies, so dr young and left spin the lie into me supporting everything bush did. dr young, i dont worship politicans like you do. i have a free mind to decide my opinion on my own.

your post is full of lies. it even has a tone of there is no cure because of DA. i have lost all respect for you. go to hell.

DA,

if you still read please write me.

Paolo

[chris arnold]

Such a shame that folk have to get rude.
Politics, per se, is not the answer. Perhaps some who want greater funding still voted Republican because it is unlikely that single candidate will be seen to have all the desired attributes, so a compromise is reached.
Electorates, since my childhood, have always come over as venal, and after the austerities of WW2, this has worsened.
The justice in seeking cures for all neurologically debilitating, and often, terminal conditions ought to be plain to see. Those who see taxation as nothing other than a mean spirited burden placed upon them, if they took the trouble to read up on the matter, would soon realise what huge savings would be achieved to both the medical and care communities. Blair once said that pensioners were like "rabid rottweilers", and were becoming more numerous.The kernel of this is clear; politics moves money towards those who can inflict the most damage to whoever is in power. While SCI, Alzheimers, MS etc. are isolate, they each make little political noise. On the other hand, cancer, directly or indirectly affects 1 in 3: government seen as stingy on direct funding here is not in it's best interests. Furthermore, WRCF is a global, if regionalised organisation everyone knows about. Sure Macmillan and hospice services are there, but in recognition that tragically many still succumb to cancer. It is understood that they are not "cure research agencies".

[keeping on]

chris let me say this. Obama will release stem cell therpay funding if he gets relected. If romney gets elected, I have doubts. either way stem celll research will go on. Groups like CIRM of california , the reeve foundtion, and the miami project will continue to prosper with no end in site. If Wise Young is successful, then a lot of this will be put to rest. the question is will wise be abel to tell us that walking has been achieved, nerves have grown across the injury site and connected in the appropriate location bowel, bladder, and sexual function has been restored,period.

anthony

[chris arnold]

chris let me say this. Obama will release stem cell therpay funding if he gets relected. If romney gets elected, I have doubts. either way stem celll research will go on. Groups like CIRM of california , the reeve foundtion, and the miami project will continue to prosper with no end in site. If Wise Young is successful, then a lot of this will be put to rest. the question is will wise be abel to tell us that walking has been achieved, nerves have grown across the injury site and connected in the appropriate location bowel, bladder, and sexual function has been restored,period.

anthony

I am sure you're correct about Obama's intentions. However, the existing balance between what politics can actually achieve, and what various faceless vested interests allow them to do, remains.
At face value, the size of a lobby group can do much to determine the course of government policy. SCI's as such are in relative terms, a very small percentage of the population, although other medical conditions condemn many more to a life largely, if not entirely in a wheel chair. I think the point I was trying to make was that we may be small in number, but the effects of our condition are disproportionately huge socio-economically. Apart from the emotional personal effects, we must not forget how many young people become removed from wealth creation, while becoming a large liability on the public purse.