Page 6 of 9 FirstFirst 123456789 LastLast
Results 51 to 60 of 83

Thread: Am I alone again?

  1. #51
    Quote Originally Posted by Wise Young
    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.
    Any researcher I have spoken to says that more basic research is needed for the new, exciting breakthroughs rather than for money into trials for the older ideas. I'm really confused.

  2. #52
    Quote Originally Posted by Wise Young
    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
    Thanks for your post. I appreciate you taking the time to write it. What you wrote makes a lot of sense. It really does. I have seen both movie versions of Pollyanna but never thought about it in those terms before.


    I must admit I feel bad for being so negative in this thread. I am not usually like that. Or at least I am not as consistently negative as I have been feeling lately. I don't know. It's so tough. Everything feels so bleak right now. Any light seems so far away. But I think I do know that there has to be some hope somewhere. Otherwise I would have given up on things like spending time on this forum a long time ago. I very often feel like that I am fighting this all alone. But I know that is not true. I am very happy that I found this place.

  3. #53
    Quote Originally Posted by Ads32
    Any researcher I have spoken to says that more basic research is needed for the new, exciting breakthroughs rather than for money into trials for the older ideas. I'm really confused.
    Ads32,

    It is not an either/or situation. Both are needed. Right now, NIH is spending about $80 million on basic spinal cord injury research. It is spending perhaps $15 million on rehabilitation research. It is spending almost no money on clinical trials for treatments of acute or chronic spinal cord injury.

    Many researchers now doing exciting breakthrough work. However, companies don't consider spinal cord injury a big enough market for them to invest $10-$30 million per clinical trial. Therefore, many therapies are now awaiting clinical trial.

    I don't know who the researcher that you spoke to but my guess is that the researcher is doing laboratory research and is not doing and has never done clinical trials. Many therapies are ready for and can be taken to clinical trial if funding were available. The problem is that companies consider spinal cord injury to be small market and do not have enough money to invest in $10-$30 million for the clinical trials.
    • Chondroitinase. This is a treatment that has been shown by at least four different groups now to stimulate regeneration in the spinal cord of rats. However, there is no enough funding to go to clinical trial.
    • Rolipram and db cAMP. These two treatments have been reported by at least three groups to have beneficial effects on recovery in animal spinal cord injury models. Rolipram has already been in clinical trial for MS.
    • IN-1. This is being done in a phase 1 trial by Novartis in Switzerland. It would be useful if there were funding for a phase 2 trial in the United States when the phase 1 is completed.
    • Cethrin. We are awaiting the results of Bioaxone's phase 1 trial. A phase 2 trial is needed if and when the phase 1 trial shows safety.
    • Olfactory ensheathing glia. Geoffrey Raisman is planning a clinical trial on these cell transplants in human brachial plexus injury. However, several animal studies have suggested that this treatment may restore some function. At the present, in Lisbon, they are doing nasal mucosal transplants. Don't you think that it would be important to assess whether this treatment is effective in the United States before more people go to Lisbon, paying for the therapy?
    • Umbilical cord blood mononuclear cells and lithium. We are carrying out these trials in China.
    • Alternating current stimulation of the spinal cord. This has gone through phase 1 clinical trials and the FDA has approved the device on compassionate use basis. This needs now to go through phase 2 and phase 3 trials to demonstrate efficacy.
    • Embryonic stem cell transplants are being taken to clinical trial by Geron. I am sure that it would help Geron a great deal if NIH funds were available for clinical trial.
    • Schwann cell transplants. These have already been tried for MS at Yale. The Miami Project has reported that Schwann cell transplants combined with rolipram and db cAMP is must better than Schwann cells alone.
    • Bone marrow stem cell transplants. Darwin Prockop at Tulane has been trying to start this clinical trial for the last three years. Many animal studies have reported beneficial effects. So, shouldn't this go into trial?
    • Decorin. Stephen Davies and his colleague Jeanette have been reporting very promising results with this molecule. It should be ready to go to clinical trial soon. Wouldn't it be nice to have a clinical trial network available to start testing this molecule as soon as it become available?

    These ten therapies alone should be more than sufficient to take up $300 million of funds for spinal cord injury clinical trials in the United States over the coming three years. Who says that we don't need clinical trials? It also takes time to set up a clinical trial network and we should be ready when many of these and other therapies are ready to go to trial.

    Wise.

  4. #54
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Location
    Windsor ON Canada
    Posts
    19,320
    Quote Originally Posted by spidergirl
    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.
    I think this is the best post I've read in a long time and so true. Even though it's been 21yrs for me, my biggest fear remains dying without one improvement. I won't lose hope until I breathe no more. Or, as Schmeky as said, some sort of light in the tunnel for future generations.

    I * NEVER * want my neice or nephew to go through anything even remotely close to paralysis. They're in their early twenties. Hurry up medicine!
    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. #55
    Senior Member Steve's Avatar
    Join Date
    Jul 2001
    Location
    Quebec, Canada
    Posts
    354
    You think exactly like me, Orangejello

    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.

  6. #56
    Senior Member Steve's Avatar
    Join Date
    Jul 2001
    Location
    Quebec, Canada
    Posts
    354
    Thank you for your nice message but I just can't believe in a God when you can suffer like that in a wheelchair.

    Quote Originally Posted by manouli
    Hey Steve, every night for 24 years I sleep and dream, I've never seen in my dreams that I am paralyzed. I always walk like before my accident, some times with a difficulty but always walking. That tells me my body is ready to walk again, our bodies and our minds want to walk again, and they are ready to do it. I trust my dreams, we never dream about something that is impossible to happen. If they put back the connection, everything else in our body and mind will do the right thing. Our nerves will make us run again, feel again. It might be easier than we think. As soon they start clinical trials, then nothing will stop progress.

    quote:

    I gave up about this.
    Like God, we hear a lot about him but we never saw him...
    Am I wrong?

    Steve, I always knew that we don't see God, we feel God. I feel God to kill my pain, and gives me hope and strength to deal with this. If you believe in God Steve, keep doing it, feel God inside you all the time untill the cure will come and you won't lose. You are a special human being because of your faith and your believes in your faith. For me walk or not walk, I always feel God inside me until I die, then God will stay behind to help other living people if they will accept him in their hearts, if they don't need him is find too. God is for the living, and God will be the way we want him to be. Be well,manouli

  7. #57
    Senior Member Schmeky's Avatar
    Join Date
    Sep 2002
    Location
    West Monroe, LA, USA
    Posts
    3,416
    Dr. Young,

    I agree with your points in post #53, yes these promising therapies have potential and merit. Since "we" SCI's only represent roughly 1% of the American population, our voice is small. We are portrayed as "adjusted", "coping well", and "adapting", our condition is not, in most instances, considered life threatening by the public.

    Since we are such a small percentage of the population, our voices merely squeak in a vast sea of screams and shouts for diabetes, cancer, and bio-terrorism research funds.

    What we need is a grand slam in the lab, I mean an out of the park, in the parking lot hit. Something bigger than big, a huge leap, an eye opener. This would get the attention, and most importantly, the funding future generations will need. Going before the NIH or Congress with this research feat would transform our squeaky voice into a really big fog horn.

    I see clinical trials in the USA as a chicken and an egg thing. Which one needs to come first, clinical trials, or a major breakthrough?

    I say a breakthrough.

  8. #58
    Quote Originally Posted by Schmeky
    Dr. Young,

    I agree with your points in post #53, yes these promising therapies have potential and merit. Since "we" SCI's only represent roughly 1% of the American population, our voice is small. We are portrayed as "adjusted", "coping well", and "adapting", our condition is not, in most instances, considered life threatening by the public.

    Since we are such a small percentage of the population, our voices merely squeak in a vast sea of screams and shouts for diabetes, cancer, and bio-terrorism research funds.

    What we need is a grand slam in the lab, I mean an out of the park, in the parking lot hit. Something bigger than big, a huge leap, an eye opener. This would get the attention, and most importantly, the funding future generations will need. Going before the NIH or Congress with this research feat would transform our squeaky voice into a really big fog horn.

    I see clinical trials in the USA as a chicken and an egg thing. Which one needs to come first, clinical trials, or a major breakthrough?

    I say a breakthrough.
    quote:
    I see clinical trials in the USA as a chicken and an egg thing. Which one needs to come first, clinical trials, or a major breakthrough?

    Schmeky, can we have a major breakthrough without clinical trials on us? If they only try it on rats and not on people, how will they know that is success. I don't know I am not smart, do you need first a theory then a practice? If they start clinical trials I feel comfortable that they will be very carefull because they have, I think, a good idea that a few good therapies will work without any harm. So far the only thing they have try in the US on people is loco motor therapy. I think they are a little chickens, too much of scare to go ahead and take the first step. Come on doctors be a men, show me your knowledge.lol,manouli
    Last edited by manouli; 11-13-2006 at 10:58 PM.

  9. #59
    Senior Member spidergirl's Avatar
    Join Date
    Nov 2005
    Location
    Hollywood, CA
    Posts
    1,049
    Quote Originally Posted by Wise Young
    Spidergirl,

    I also have that fear occasionally, that nothing much will happen in the coming decade.

    Wise.

    OH DR. YOUNG DONT SAY THAT PLEASE!!!!!

    THE DEMOCRATS ARE WINNING AND WE WILL GET BACK CONTROL!!!!

    U KNOW THINGS IN THIS COUNTRY SKYROCKET LIKE NO TOMORROW. IF THERE ARE THERAPIES THAT ARE PROVEN TO WORK PROGRESS WILL HAPPEN - NOONE IN THERE RIGHT MIND IN THIS COUNTRY WILL TURN DOWN A THERAPY PROVEN TO BE SUCCESSFUL.

  10. #60
    Senior Member
    Join Date
    Sep 2001
    Location
    New York USA
    Posts
    291
    Dr. wise... never let the people with their negative thoughts distract you. As you can well imagine it's very frustrating in a wheelchair. It's going to happen your goal to repair sci... when it does let's make sure we find a way to make the people negative choke on their words & posts. There are so many things going on behind the scenes which can not brought out to the public yet. If the frustrated people would take their anger out on the politicians & companies to finance & donate $ things could be completely different. Keep up the great work wise. Looking forward to shaking your hand & saying thank you.
    keiffer66

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •