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Thread: Am I alone again?

  1. #41
    Hope

    Hope is the thing with feathers
    That perches in the soul,
    And sings the tune--without the words,
    And never stops at all,

    And sweetest in the gale is heard;
    And sore must be the storm
    That could abash the little bird
    That kept so many warm.

    I've heard it in the chillest land,
    And on the strangest sea;
    Yet, never, in extremity,
    It asked a crumb of me.

    Emily Dickinson

    Never give up.

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  2. #42
    Quote Originally Posted by orangejello
    I agree with Steve I am sad to say. I don't think there will be any cure for me. I don't know enough about what is going on in terms of a cure I suppose to really have an educated opinion. But I don't think I will see one in my future . I think I have resigned myself to living like this for the rest of my life.
    OJ (Amanda),

    After many years of posting and reading on this site, I have come to realize that hope is a state of the heart, not of the mind. Hope is not rational because it applies to the future and we cannot rationally predict the future from the here and now.

    A reporter in St. Louis (I forget his name) asked me outside a lecture that I gave at St. Louis University several years ago, whether I was giving false hope to people with spinal cord injury. I don't know what prompted me to say it but perhaps it was from conversations that I had with Christopher Reeve, I blurted out, "No hope is devastating". No hope is not only devastating but false.

    There is real hope, false hope, false despair, and scams. Let me try to describe each of these.

    1. Real hope. There are many reasons for hope. We know that the spinal cord can regenerate. We did not know this for many years but I can assure you that it is true. I have seen it with my own eyes in animals. I think that regeneration occurs to some extent in people but of course not sufficiently and we must have therapies to ensure that it occurs in everybody. By the way, I want to point out that, before 1995, I was skeptical that the spinal cord could regenerate. Many studies have now shown that there are three major obstacles to regeneration: an inhospitable environment at the injury site, lack of sustained growth factor support, and axonal growth inhibitors in the spinal cord. Bridging the injury site with cells, delivery of growth factor cocktails, and blockade of growth inhibitors have stimulated some regeneration in the spinal cord. Several studies indicate that combination therapies are more effective than any of the individual therapies. What we need to do now is to deliver the therapies that help the axons overcome all the obstacles. Delivering combination therapies to chronic spinal cord injury is not a trivial task, even in animal studies. To do this in humans will require a herculean effort. However, it is no more difficult than flying to the Moon and getting back. We know what the obstacles are, i.e. pulling free of the gravitation pull of the earth, landing on the moon, taking off and coming back, and landing back on the earth. When John F. Kennedy decided to make getting to the moon a national priority, it was just a gleam in his eyes and hope in his heart. He of course did not live to see his dream come true, just like Christopher Reeve did not live to see his dream come true. But, it is doable and worthwhile doing. That is what real hope is, not only for yourself but for all others.
    2. False hope. To be sure, there is false hope. These occur in the form of people touting various therapies as potential cures, based on little or no data. Almost every day, we see posted news articles that proclaim hope for people with some disease. When you read the fine print, it is clear that the work has not yet come to fruition, that it may be many years before it will be actually applied to people. It is hard to blame the scientists and reporters who proclaim the hope. Perhaps they truly believe that what they have discovered and are reporting will be curative. On the other hand, we are all grown up and understand that not everything is true or will come true. Part of the purpose of this site is to allow people to distinguish between hype and hope.
    3. False despair. Do you really want the naysayers to win? People like Senator Bill Frist and even people in wheelchairs such as Charles Krauthammer attacked John Kerry for saying that he was committed to research to allow people like Christopher Reeve to get out of their wheelchairs. They cried, "False Hope!". Are they not giving "false despair" to people with spinal cord injury? What is worse, "False Hope" or "False Despair"? While I can understand the sentiment that one might feel now, that the cure may not arrive in time to help people now, is it reason to say that a cure is impossible? Impossible is only true when we give up. For the marathon runner who hits the "wall" on the 20th mile, the despair is real but simply an illusion. Marathon runners fail for the lack of hope. Hope is a state of the heart and not a state of the mind.
    4. Scams. There will be some who will take advantage of your hope and despair, for fame or fortune. I was aghast last year when I met Woo-suk Hwang with several people in wheelchairs and witnessed him telling them that he will cure them, when he knew that his data was faked. There are many clinics around the world that offer the "cure" for $20,000 (sort of the going price). Please don't fall for it. When the "cure" happens, it will be very different. It will not happen in some out-of-the-way clinic with a therapy that they will hold back from others. The problem of regeneration is too difficult to be solved by merely plugging in some magic cells or anonymous growth factor cocktail. Don't be fooled. Stem cells are not magic cells. Cure is not a lottery or a stroll through a casino.


    Real hope is not painful. It is simply determination to succeed, the knowledge in one's heart that one must succeed.

    Wise.
    Last edited by Wise Young; 11-12-2006 at 03:51 PM.

  3. #43
    On Nov 18, 1995, Izhak Perlman, the violinist, came on stage to give a concert in Avery Fisher Hall in Lincoln Center, NYC. If you have ever been to a Perlman concert, you will know that getting on stage is no small achievement for him. He was stricken with polio as a child and so he has braces on both legs and walks with the aid of two crutches. To see him walk across the stage, one step at at time, painfully and slowly is an unforgettable sight. He walks painfully but majestically until he reaches his chair. Then he sits down, slowly, puts his crutches on the floor, undoes the clasps on his leg braces, tucks one foot back and extends the other forward. Then he bends down and picks up the violin and puts it under his chin, nods with a slight smile to the conductor and proceeds to play.By now the audience is used to this ritual. They sit quietly while he makes his way across the stage. They remain reverently silent while he undoes the clasps on his legs, They wait until he is ready to play.

    But this time, something went wrong. Just as he had finished the first few bars, one of the strings on his violin broke.You could hear it snap - it sounded like gunfire in the auditorium. There was no mistaking what he had to do. People who were there that night thought to themselves: "We figured that he had to get up, put on the clasps again, pick up the crutches, and slowly, painfully, walk off stage to find another violin and walk back again."

    But he didn't. Instead he waited a moment, closed his eyes and then signalled for the conductor to begin again. The orchestra began, and he played where he had left off. And he played with such passion and power and purity as they had never heard before. Of course, everyone knows that it is impossible to play a violin concerto with three strings. I know that, and you know that, but that night Itzak Perlman refused to know that. You could see him modulating, changing, and recomposing the fingering in his head. At one point, it sounded like he was de-tuning the strings to get new sounds from them that they had never made before.

    When he had finished, there was an awesome silence in the auditorium. And then people rose and cheered. There was an extraordinary outburst from the entire audience. We were all on our feet, screaming and cheering, doing everything we could to let him know how much we appreciated what he had done.

    He smiled, wiped the sweat from his brow, raised his bow to quiet us and said, not in a boastful way, but in a quiet pensive manner, "You know, sometimes it is the artist`s task to find out just how much music one can make with what one has left."
    Last edited by diane2; 11-14-2006 at 01:48 PM.

  4. #44
    Senior Member lynnifer's Avatar
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    ((A wonderful story, thanks diane2)).
    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

  5. #45
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    Dr. Young

    Thank you so much for your kindness and patience.

    When hope wanes, you are always there to bring it back to the light.

    You are one-of-a-kind. I truly appreciate everything you do, and how you take time to try and keep us all motivated and optimistic.

    Thank you Diane2 for your story.........and John for that lovely poem.

    I needed that!

    Shelley
    Last edited by shelley; 11-12-2006 at 10:16 PM.

  6. #46
    I have been feeling very hopeless about many things lately. So I guess maybe my earlier post might have been made more out of a general sense of despair, rather than a specific negitivity towards a cure. It's not that I don't want to feel hopeful about potential cures. I am just finding it very hard to find a spark of hope anywhere in my life at the moment. I know in my heart that is not the reality of things, but sometimes I think the mind is more powerful than the heart. Or, at the very least, the mind is capable of playing more powerful tricks with one's emotions. I guess it's almost a case that the ideas of a cure and of the future are linked together in my mind. I am not feeling all that positive towards the future in general. So that pessimism automatically transfers on to any ideas I have about cures. It's not rational. But rationality is not one of my strengths at the moment. I don't even know if that makes sense...

    Thank you diane. That was a lovely story and I have printed it off. Also thank you John. I had read that poem before but forgot about it. It made me smile and I printed it off as well. Jen thanks to you too. I hear what you are saying.


    Quote Originally Posted by Wise Young
    After many years of posting and reading on this site, I have come to realize that hope is a state of the heart, not of the mind. Hope is not rational because it applies to the future and we cannot rationally predict the future from the here and now.

    A reporter in St. Louis (I forget his name) asked me outside a lecture that I gave at St. Louis University several years ago, whether I was giving false hope to people with spinal cord injury. I don't know what prompted me to say it but perhaps it was from conversations that I had with Christopher Reeve, I blurted out, "No hope is devastating". No hope is not only devastating but false.
    I didn't reply earlier in the day when I first read this because I needed time to think about what you wrote Dr. Young. The whole notion of what "hope" means has been weighing heavily on me lately. But what you wrote helped me make a little headway through my confusion. I don't know if my rambling first paragraph reflects that. But what you wrote helped me a great deal. Thank you.

    Real hope is not painful. It is simply determination to succeed, the knowledge in one's heart that one must succeed.
    Wise.
    I guess maybe I am just going through something right now where any kind of hope seems too painful to contemplate. It's easier to put up a wall. Then there is no pain. But you are right, one can't stop there.

  7. #47
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    Quote Originally Posted by Wise Young
    Real hope is not painful. It is simply determination to succeed, the knowledge in one's heart that one must succeed.

    Wise.
    Wise, I am very pleased to see that a scientist like you has this kind of hope, it means hope for all of us. Thank you for having the SCI cure at heart and doing something about it, I am very grateful.
    Pharmacist, C4-5 injury but functional C6 (no triceps/flexors)

  8. #48
    Quote Originally Posted by orangejello
    I have been feeling very hopeless about many things lately. So I guess maybe my earlier post might have been made more out of a general sense of despair, rather than a specific negitivity towards a cure. It's not that I don't want to feel hopeful about potential cures. I am just finding it very hard to find a spark of hope anywhere in my life at the moment. I know in my heart that is not the reality of things, but sometimes I think the mind is more powerful than the heart. Or, at the very least, the mind is capable of playing more powerful tricks with one's emotions. I guess it's almost a case that the ideas of a cure and of the future are linked together in my mind. I am not feeling all that positive towards the future in general. So that pessimism automatically transfers on to any ideas I have about cures. It's not rational. But rationality is not one of my strengths at the moment. I don't even know if that makes sense...

    Thank you diane. That was a lovely story and I have printed it off. Also thank you John. I had read that poem before but forgot about it. It made me smile and I printed it off as well. Jen thanks to you too. I hear what you are saying.

    I didn't reply earlier in the day when I first read this because I needed time to think about what you wrote Dr. Young. The whole notion of what "hope" means has been weighing heavily on me lately. But what you wrote helped me make a little headway through my confusion. I don't know if my rambling first paragraph reflects that. But what you wrote helped me a great deal. Thank you.

    I guess maybe I am just going through something right now where any kind of hope seems too painful to contemplate. It's easier to put up a wall. Then there is no pain. But you are right, one can't stop there.
    Amanda,

    Let me change the subject a little bit. Please bear with me because I hope that the discussion will be relevant to you.

    One of my favorite movies when I was 11 years old was a 1960 Walt Disney movie called "Pollyanna", starring Hayley Mills, based on a book by the same name. Pollyanna was the "glad" girl who was always able to cheer everybody up by seeing the best aspect of any situation. Towards the end of the movie, Pollyanna was paralyzed and was unable to smile or see the "glad" aspects of any situation, including her own. Recently, I saw a 2005 PBS Masterpiece Theater version of the movie, starring Georgina Terry as Pollyanna, that was much more explicit about spinal cord injury being the cause of the paralysis and amazingly showed her eventual partial recovery from the paralysis. These movies were based on a 1913 novel by Eleanor H. Porter (Source).

    Due to the book, there is a game called the "Glad Game" where the object is to see what is good about any situation, even the worst times. It is interesting that Eleanor H. Porter chose spinal cord injury as one situation that Pollyanna was unable to overcome with her "glad game". I don't know whether this is true but I believe that Eleanor Porter must have been close to a girl with spinal cord injury to write the book. The book ended with a letter from Pollyanna to her Aunt Polly, reporting her newfound ability to walk six steps after 10 months of rehabilitation.
    http://www.bibliomania.com/0/0/39/77/frameset.html
    “Dear Aunt Polly and Uncle Tom:—Oh, I can—I can—I can walk! I did today all the way from my bed to the window! It was six steps. My, how good it was to be on legs again!

    “All the doctors stood around and smiled, and all the nurses stood beside of them and cried. A lady in the next ward who walked last week first, peeked into the door, and another one who hopes she can walk next month, was invited in to the party, and she laid on my nurse’s bed and clapped her hands. Even Black Tilly who washes the floor, looked through the piazza window and called me ‘Honey, child’ when she wasn’t crying too much to call me anything.

    “I don’t see why they cried. I wanted to sing and shout and yell! Oh—oh—oh! just think, I can walk—walk—walk! Now I don’t mind being here almost ten months, and I didn’t miss the wedding, anyhow. Wasn’t that just like you, Aunt Polly, to come on here and get married right beside my bed, so I could see you. You always do think of the gladdest things!

    “Pretty soon, they say, I shall go home. I wish I could walk all the way there. I do. I don’t think I shall ever want to ride anywhere any more. It will be so good just to walk. Oh, I’m so glad! I’m glad for everything. Why, I’m glad now I lost my legs for a while, for you never, never know how perfectly lovely legs are till you haven’t got them—that go, I mean. I’m going to walk eight steps tomorrow.

    “With heaps of love to everybody,

    Pollyanna.
    The amazing thing was that this book was written in 1913. In those days, most people with spinal cord injury did not recover and more than half died. For Eleanor Porter to write a book that described a girl recovering function after spinal cord injury was revolutionary. Well, in 1960, the Hayley Mills film did not show her recovery explicitly. However, the 2003 (later shown on Masterpiece Theater in 2005) film showed Pollyanna walking in the wedding of her beloved Aunt Polly, in crutches and beaming. I guess that that is the difference between 1960 and 2003.

    Over the years, the word Pollyanna has been much abused, often used derisively to refer to people who engage in false optimism and self-deception. In psychology, the term Pollyanna Principle refers to phenomenon that the brain processes and remembers pleasing information more efficiently than unpleasant information. Matlin & Gawron (1979) found that people are much more likely to understand and remember pleasant information than negative information. In other words, people hear what they want to hear and ignore what they don't want to hear. More recent studies suggest that a "reverse pollyanna phenomena" occurs when people are depressed. Such people tend to hear and remember the bad news and not the good (Calev, 1996).

    I have noticed both Pollyanna Principle and the reverse Pollyanna Phenomena on these forums. I often read posts from people saying that they heard doctors predicting that a cure would be coming in five years or less, back in the 1990's and even in the 1980's. These remembrances always come as a surprise to me because I remember the early 1990's and particularly 1980's as a time of deep and dark pessimism amongst scientists and doctors strongly denying any possibility of a cure. My colleagues in the clinical field were particularly pessimistic.

    In 1996, I was standing next to a prominent orthopedic surgeon watching Christopher Reeve give a talk, after which I had to give a lecture. The doctor leaned over and whispered in my ear... "The only thing that can help him are electrodes placed in his hypothalamus to stimulate orgasms" or something to that effect. I mentally (and perhaps even physically) recoiled. I went ahead to give probably the most angry lecture that I had ever given about hope for treatments of spinal cord injury and subsequently wrote an editorial for Science Magazine, criticizing the "Fear of Hope" amongst scientists and doctors.

    On innumerable occasions, people have asked me about an experimental treatment and whether or not they should go to some clinic to get the treatment. I do my best to summarize the positive and negative aspects of the therapy, hoping that people would be able to use the information in a balanced and rational way. Almost consistently, people have ignored my warnings, remembered everything positive that I might have said about a therapy, and went on ahead. One person even told me after he had gone to have the therapy that he "deliberately ignored" anything negative that I said about a given therapy because he knew that if he listened to the warnings, he would not have the courage to go. That taught me a great deal and I thank the person for telling me.

    On these forums, I try hard to provide a balanced picture and not to overplay the negative aspects of experimental treatments. Many people who have been injured a long time are listening for the good news and ignoring the warnings. On the other hand, many here are in their early phases of injury and are hearing only the bad news and can't hear the good news. It is a difficult balancing act but the only way that I know how to deal with the situation is to be as honest as I can. That is the reason why I wrote the missive below to you, as I did, listing real hope, false hope, false despair, and scams. The real hope part of the message was for you but other parts are for others.

    Why I am telling you all of this? It is because I know that you are struggling to understand why everything seems so dark. It is hard to see the light at the end of the tunnel when you are breathing with a ventilator. For those in pain, every minute is a nightmare. For those who are paralyzed, every hour seems forever. What I hope that you will understand is that many are in the same predicament and that you are not alone. Part of the epiphany for Christopher Reeve was his realization that he was not just working for himself but for all other like him. You are wonderful and I hope that you know that. I have only known you through your posts but for that I am grateful.

    Wise.


    Reference
    1. Matlin MW and Gawron VJ (1979). Individual differences in Pollyannaism. J Pers Assess 43: 411-2. The Pollyanna Principle states that people process pleasant information more accurately and efficiently than less pleasant information. This study examined whether different measures of Pollyanna tendencies are correlated with each other. Fourteen measures of Pollyannaism were derived for 133 students. The results showed that subjects who rated themselves as optimistic or happy also showed Pollyannaism on other measures of happiness, believed that the events in their lives were pleasant, gave themselves positive ratings on personality characteristics, recalled pleasant words more often than unpleasant words, supplied more free associations to pleasant stimuli than to unpleasant stimuli, listed pleasant items first, and judged that pleasant words were more frequent in the English language. State University of New York, Geneseo, USA. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16366974
    2. Calev A (1996). Affect and memory in depression: evidence of better delayed recall of positive than negative affect words. Psychopathology 29: 71-6. It is widely accepted that depressives focus on negative memories, and forget or repress positive memories (showing a mood-congruent affective tendency). Normals have an opposite positive bias in memory ('Pollyanna tendency'). Research evidence for depressives' negative bias in memory comes mainly from studies of retrieval of personal experiences during depression, or from studies of such retrieval during induced mood. In the present study, the hypothesis that depressives encode and remember negative emotion materials better than other materials was tested. Contrary to the hypothesis, the results showed that severely depressed patients remembered more positive affect than negative affect words, after a 2-day delay. Depressives' overall memory performance and rate of forgetting were poor, similar to schizophrenics', and worse than normals'. The results suggest that, while memory performance during a depressive episode is poor, the memory consolidation process for affective information is normal. Unlike in schizophrenia, it does not select negative emotion materials. This conclusion is not incongruent with the finding that depressives show mood-congruent retrieval for previously learnt personal (experiential) information. The consolidation of non-personal (nonexperiential) positive affect materials during depression may provide a clue as to the mechanism of recovery in depression, and the lack of such recovery in schizophrenia. Herzog Memorial Hospital, Jerusalem, Israel. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8861510
    Last edited by Wise Young; 11-13-2006 at 04:35 AM.

  9. #49
    Senior Member spidergirl's Avatar
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    I think that the biggest fear Dr. Young and all- is that we are many many years away. I know that everyone is looking for answers and timelines and its impossible. It will happen when it happens. The important thing is though is that there are brilliant scientists/doctors out there so passionate to heal us that we are even blessed we have an injury being worked on. None of us can say when a cure will happen. A breakthrough could happen tomorrow or could happen in 10 years.

    Personally, and i have said this before, i don't like the word "hope" to much. It almost seems like a reflection of despair. Reversing paralysis might be on of one side one of the the hardest things to accomplish in medicine and on another side one of the biggest breakthroughs in medicine. So it seems like a catch 22.

    I think that if the "cure" does come in the next decade that we will all be pioneers set in stone in history and while the stem cell wars are going on now is the time to get out there and make a difference not only for ourselves but for our country.

    We are scared we all are. We do not want to die like this when we were born normal and healthy. The thought of having mobility again is one of the most beautiful things we all could imagine that so many people take for granted.
    Last edited by spidergirl; 11-13-2006 at 05:59 AM.

  10. #50
    Spidergirl,

    I also have that fear occasionally, that nothing much will happen in the coming decade. That is one of the reasons why we must do something about it. I know that the mantra is old now to many people on these forums, that we must do clinical trials of combination therapies. We must have the clinical trials in the United States. That was why my message at the May rally in Washington DC was to stop outsourcing clinical trials overseas.

    The title of this topic was "Am I alone again?" You are not alone. There are many who share the predicament. But, there is much that we can all do about the situation.
    • Proposition 71. California, for example, will be spending close to $380 million this coming year on stem cell research. It is time to work with scientists and doctors in California, to persuade them to apply for the funds to do clinical trials.
    • New Jersey Stem Cell Inititative. We are still fighting in New Jersey for the funding.
    • SCREA. In the first 100 hours of the new Congress, the democrats are planning to get the Stem Cell Research Enhancement Act passed again, hopefully with a veto-proof margin in the Senate but, as Nancy Pelosi points out, we still need about 40 votes in Congress to pass the act with a veto-proof margin. A letter writing campaign would help give your Congressional representative the support and courage to vote for the bill. A group of people from CareCure will be going to Washington DC in the coming week, to buttonhole their representatives.
    • CRPA There is still the Christopher Reeve Paralysis Act to get through the Congress, that should add $100 million over 3 years for clinical trials.
    • NIH. People can start telling Congress that they want to increase the NIH budget to do more clinical trials.

    In the meantime, there is a lot that you can do to prepare yourself. If you are not doing so, I suggest spending at least an hour a day standing and walking, swimming, and doing sit-ups. Start writing letters. Make phone calls. Find the spinal cord injury scientists in your area and ask them what they are doing to get their therapies into clinical trials.

    Wise.

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