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Thread: Rick Hansen doesn't dream to cure SCI

  1. #91
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    No comments? Ok, other cure work to be done other places.

  2. #92
    This is the CURE side of the forum. Nobody cares about CARE here, or if someone can have a great life without it, so please, take the debate about accesibility and other stuff to the right place of this holy forum.
    Paolos point of view is clear in his comments, and only involve the CURE side of RHI work.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

  3. #93
    dis·course 
    –noun

    1. communication of thought by words; talk; conversation: earnest and intelligent discourse.

    2. a formal discussion of a subject in speech or writing, as a dissertation, treatise, sermon, etc.

    3. Linguistics . any unit of connected speech or writing longer than a sentence.

    Isildur, last time I checked, this forum doesn't function under a dictatorship, nor are you a moderator. It would be great if we could work on a unified message we want to deliver in the hopes of securing more funding for research in the future. How else are we supposed to do that than through discourse?

  4. #94
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    So Canadians (edit, not KiranA) simply disappeared from important discussions? Does it show some proof in the pudding? Anyhow Canadians, take it easy; some will help you to get the keel of the boat where it belongs, to gain some speed.

  5. #95
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    I’m out of this care vs. cure debate on CC -for ever, but the cure work will continue, with or witouth other (with some) Canadians. Bye.

  6. #96
    BOO HOO The Canadians won't share their funding the way other countries, who don't contribute to the RHI, want them too.

  7. #97
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    Quote Originally Posted by Foolish Old View Post
    No, because they spend so much time talking about the other guy having the wrong orientation that could be used on actual accomplishments. Most folks just say "a pox on both their houses" (and their senates ) and turn away from them believing they ain't gonna do shit that matters. Right or wrong, the VAST majority of people think congress sucks.

    free advice is worth what you paid for it. but here's a u and an o you can keep for your very own. don't say I never gave you anything.
    Hi Foolish Old

    This reaction occurs on this side of the Atlantic as well.
    2010 SCINet Clinical Trial Support Squad Member
    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

  8. #98
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by paolocipolla View Post
    Not long ago you would have supported or even leaded the European members of this forum. Who brainwashed you???
    You use to be so nice & full of hope.... as I remember....
    So now I'm not nice? lol After 25yrs+ of paralysis, I saw the forest for the trees. I didn't need brainwashing. There is much better care (if doctors use it!) for people presenting in emerge with spinal cord injuries now. With the trials in place (Geron), perhaps that will improve even better. I very rarely meet anyone newly injured who is complete - that's quite an improvement. The bittersweet part is that if what happened to me had happened now, I would have been spared a lot, or so I believe. That's progress. Over the years, myself, my parents and family and relatives and friends and co-workers and even complete strangers have all supported that progress.

    As for chronics, I am 25yrs in and 38yrs old. Three major complications over that span of time, if you count the latest: needing a hysterectomy. I had to have my left ankle bone removed 2yrs ago - no pressure on that foot ever again. (I had a tailbone/flap surgery from a pressure sore at age 15 as well).

    I hope you never have to reach 25yrs and be where I am. Over those 25yrs, I've bargained with myself thinking that progress would come in steps. Breathing first for vent dependent, fingers, hands and arms for quads, bowel, bladder and sexual function and on from there for paras. In the meantime, I was busy living my life and achieving my goals while still donating and hoping.

    Right now all we have is a diaphragmic pacer and I don't know much about that technology but it seems like a major band-aid, instead of a cure. I've not seen any treatments for chronic spinal cord injury so we're still at square one with a long ways to go. Trials for safety have just begun. Ampyra took almost 30yrs (if you count the failure in Switzerland where the patient died well before Acorda came along) to come to fruition and that's just an oral drug.

    Once a year, I still collect donations and manage to receive just under $1000 from all the people aforementioned. I will continue to donate to the Rick Hansen Foundation or write letters and raise awareness when I feel it's needed. Our governments - provincial and federal - have given millions towards the foundation over the past couple of years. I'm sorry your governments haven't - why don't you do something about that!?

    Also, Ontario instituted a Registered Disability Savings Plan 2yrs ago whereupon grants are given to those who aren't able to earn an income because of their disability, and others working like myself, are allowed to deposit $1500 per year with the government throwing in $3500 for a cool $5000 per year TAX FREE. You aren't allowed to touch it for ten years. This is to help with the rising costs of medical equipment in an aging disability situation, housing, transportation ... or I imagine some will be holding onto it for any possible future treatment. That was a giant social leap forward for this country and I don't believe any other country in the world has that!

    Quote Originally Posted by Patrick Madsen View Post
    BOO HOO The Canadians won't share their funding the way other countries, who don't contribute to the RHI, want them too.
    Exactly. Thank you for that Patrick.

    There are no restorative treatments as of yet. There are no cures. If there were, the RH Foundation would be on it.

    I'm sorry that the truth hurts. There is nothing. I don't know if there will be in our lifetimes. Dr Young is not a youngster anymore. I'm not sure he'll even see it which will be quite sad, considering all he's done.

    The reason I don't donate to the American causes anymore is that I donated to Dr Davies and then he up and left Baylor so what happened to my funds? Kerr left Johns Hopkins so what happened to my funds? The Miami Project had some of my money years ago and yet nothing. Dr Young went overseas ... to make it easier for trials. I'm undecided on that, yet .. the jury is still out.

    Why argue amongst ourselves? The scientists need to buck up and show the world something amazing. Until then, nothing will change except there will always be someone bitching ...
    Last edited by lynnifer; 02-05-2011 at 10:39 AM.
    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

  9. #99
    Lynnifer, you say that no curative therpies exist yet. You are right. However, trials are starting and more will come. I'm hoping that something never before experienced or known will reshape the treatment of spinal injuries. You mentioned Geron; just think if their therapy will prevent those to be injured in the future fron being fixtures in their chairs. Wise's therapy and other therpies MIGHT improve the lives of the rest of us. We need clear concise results and it will thrust all of us into the next era.

    keeping on

  10. #100
    Quote Originally Posted by KiranA View Post
    Isildur, last time I checked, this forum doesn't function under a dictatorship, nor are you a moderator. It would be great if we could work on a unified message we want to deliver in the hopes of securing more funding for research in the future. How else are we supposed to do that than through discourse?
    Sorry if i act like a moderator, but we need to keep the forum clean of useless debate. The forum have some sub-forums, and this one is for all issues related to cure (therapies, research,...) If you want to talk about care, life or sex, there is a right place out of this sub-forum.
    To be honest im tired of the care vs cure debate, because many people tend to think that if you support actively the search for a cure (repair, regeneration, healing, callitasyouwant) you don´t keep moving with your life or don´t care about care, like if they were opposite things.
    -Ramps in buildings are necessary, but it would be usefull to have another ones for people (mind/heart).....

    -Hoc non pereo habebo fortior me

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