54 replies to this topic

[Ches]

"Some people become comfortable with their position in life" I couldnt agree more.

I think alot of people come to a point when they are tired of wanting and wishing. They just want to be Ok with themselves. Or they simply get lazy. Either way, its just a personality trait. I personally am a fighter, a survivor. Its in my nature. My SCI arrises a challenge, I love it. I have everything to do with it. I know thats just me, and Im only saying this so you guys dont think Im being insensitive to the people that have stopped trying.

I get it. I dont believe we should Find a cure or die trying, but I totally get what he meant. There's nothing wrong with spending your life doing your homework, trying to make a difference for everyone, if not just a handful of people. It doesnt necesarily mean you have to give your body to science and possibly end up with some condition that kills you within a few years. I think he meant until the lord takes him from this earth, not doctors. Well I hope that is what he meant. Some of these ideas people have are ridiculous and without a doubt could harm you. Thats when it boils down to who did their homework and who didnt. Thats his own fault if he loses his life, his statement applies to the general population therefore it couldnt have contributed to HIS decision. Its like the the Tabacco Industry. You know they (may) kill you, if something else doesnt get you first. They give people the "Surgeon Generals Warning" and tell people not to smoke , good advice. What you do is your choice. Which is why the tabacoo industry isnt held liable for all the deaths they have caused.

Anyways Im not here to carry on about Barber. Im fascinated with Simon, and others who have let go of the fight. I truely agree with the idea of prolonged recovery and what a struggle that it would ultimately be, but why on earth would you care how hard it may be? Thats a case of Tunnel Vision. Your looking at the downside. So what if we may never walk again, who cares right? What if they had a surgery that could magically fix only your penis...sensation and all. Would you? (Since Im being theoretical here, lets just go ahead and say the surgery is free, no planning or work involved)
I mean how can someone honestly say they dont care.. Yeah f*@king right people. I dont see myself as any less of a person now, nor do I hate all of this. But I would totally be lying if I said I didnt care about my incapabilities. I know Im still recently injuried and my AB self is seen as a luxury now that I so desperately want. I cant ever imagine a point in my life. 30 yrs post injury or whatever, that I would actually be fine with the fact I cant dance, run, get up and get a drink in the middle of the night fast enough to remain sleepy.. Do people really just suddenly stop caring?

Considering SCI's dont discriminate I realize there are going to be a few out there that cant contribute to a better tomorrow, but there are sooooo many great minds confined to a chair. Im really amazed at just how intelligent the majority of you all are. This fight can be won but its gonna take a lot of soliders. Humanity never gained a thing by being lazy, except weight. Metaphorically speaking "No one likes to carry around weight". Lots of you are settling, do you understand what that means? SETTLING.

I will always be ok with my life as it is now, in a chair but I will never decide that it cant be fixed. I'll never stop believing in the power of the mind, miracles, and doctors. Again I wont kill myself trying to find a cure but I will die trying to find one.

I'm not sure I can relate to those who would refuse something that could improve their physical functioning. Whether that means walking or even less effort in the bathroom.

Some people become satisfied with their position in life and are afraid to change anything for fear that change might be for the worse. Others have a nature that makes them more ammenable to changes in their lives, regardless of consequences.

I like to think that I am in the large group somewhere between those extremes.

I am reconciled to my condition in life, with regard to my sci, but that doesn't mean that I wouldn't welcome a change in that condition.

Should the opportunity for stem cell therapy present itself to me ( within my power to accept it), I would jump at the chance.

This doesn't mean that I am in any way depressed about my present state. It only means that I would like it if that state could be improved.

Like Popeye used to say " I ams what I ams and dats all what I ams" ( but he still ate the spinach)

If you're too young to understand the reference, ask someone old, like me.
ed

[Apparelyzed]

Hi Ches,

I haven't given up, but after 15 years of being paralysed, there are more important issues in my life than walking.

If a therapy came along tomorrow which gave me the ability to overcome paralysis, would I take it?

Of course I would, but I have to weight up my quality of life at the moment, and the disruption any therapy would bring to me and my family.

When I had my injury in 1992, the scientists said a cure would be available in 5 years, that should of been 1997.

Today, there is still no stem cell or OEG therapy which has conclusively cured paralysis, and they are still saying it'll be 5-10 years.

If I had any advice, it would be to work your ass off in physio in the early days following your injury, as this is when the greatest chance of recovery will take place. Take advantage of FES to ensure that Learned Non Use occurs.

This way you will know you have done everything you can to regain your full potential.

Regards

Simon

[wheels5894]

Well, Ches, I am one of the older types, 24 years in wheelchair and whilst many things suck, one develops a 'look on the brightside' view too. Thus drainage connected for overnight is a bit of a pain, I don't have to get up twice a night as many people of my age do!

I really wonder if there is anything in the way we become paralysed? I had some neuro tests for incontinence that came on and very qu8ickly on the back of that I became paralyzed in the course of an hour or so. Now as the neurologist had suggested MS as the problem I was dealt with at home with steriod type injections and told it would just 'get better' as MS often does. How wrong can anyone be? This appears to be Transverse Myelitis and the third that fails to recover. OK, that's quite enough of me.

Now, I am (whoops a bit more of me creeping in!) in a position where there is nothing I could have done to avoid paralysis (it's an autoimmune thing) and there is no one to blame either - it's just life - like the other autoimmune diseases I have, asthma and eczema. now nearly all the people here have either done something they regret, the diving in shallow water or something, or they can blame a driver in a crash. Does it make a difference how we react. I'd say the months in hospital don't help the psychological side any. Whilst others were lying in bed on down the gym, I was at home with wife and small children. Was the incentive of my wife and children a stronger reason to work out how to do things sitting than a hospital physio? I certainly did have to learn all that is taught inhospital by myself.

Now my history as mentioned above means that I did not concentrate on anything but my family, work, and learning my own methods of managing so, although I had not even thought of a cure, I would not have turned one down. Since then, the technology has improved greatly - lighter chairs, better cars - but of course I have just got used to the way I do things When fatigue (a feature of TM as well as MS) forced me to retire I was already working on how to do other things and on study. When I saw PC Olds struggling to get out of his wheelchair and never being able to reconcile himself to his injury to the extent that he killed himself I certainly thought that was not the way forward.

These days, I have 2 grown up children, the elder is celebrating her birthday today, and live is a great place thoughts of a cure are rather rare. I guess this is as I have become identified with the chair and people know me like that. Choirs I sing with have got used to it as well and it is just how I am. Of course, I am a lot older at 58 than many here but I suppose I am settled down and comfortable and juts a bit lazy now.

[nomis]

...I personally am a fighter, a survivor. Its in my nature. My SCI arrises a challenge, I love it. I have everything to do with it. I know thats just me, and Im only saying this so you guys dont think Im being insensitive to the people that have stopped trying.

...I cant ever imagine a point in my life. 30 yrs post injury or whatever, that I would actually be fine with the fact I cant dance, run, get up and get a drink in the middle of the night fast enough to remain sleepy.. Do people really just suddenly stop caring?

Ahh Ches, a honey of a post.

Your fighter/survivor comment strikes a chord (spinal?) with me. I was having a ponder yesterday, it must have been a “review of life” ponder and I got a very clear appreciation of how much I’ve enjoyed life as a SCI survivor. I like the drama, the struggle, the victories. I can no longer deny it, being a para has given me a clear path and meaningful life that has been most satisfying.

But that doesn’t mean I don’t feel deeply sad for the damage done to my body and for the loss of abilities and functions I’d once taken for granted. I’m more than 30yrs postSCI and my body is twitching to jump up and dance.

Here’s a scary thought for the future: Now that I’m over being self conscious and I’m confident with the body I have, I want/need to dance more than ever before. I “feel” the dance within my body so clearly nowadays. Earlier, it was too painful to let those feelings free. Life, as it unfolds, is not necessarily what I expect.

A cure is no longer important to me personally. But I appreciate it’s importance to new SCIs where there is more realistic hope. In my earlier days I worked hard in many areas of furthering the SCI cause. Other, younger people can do that now. I’ve moved into the self-centred pondering stage of my life.

The greatest power we have is to choose what we do with our own life. I’ll make that decision for myself with no interference from anyone but I would not want the responsibility of making that decision for anyone else. If people choose not to seek a cure it is their prerogative and their responsibility.

QUOTE: What if they had a surgery that could magically fix only your penis...sensation and all. Would you?

Damn right I would. My only fear is that I’d be so proud of it I’d want to show it to everyone and we know that just aint right.

QUOTE: I will always be ok with my life as it is now, in a chair but I will never decide that it cant be fixed. I'll never stop believing in the power of the mind, miracles, and doctors. Again I wont kill myself trying to find a cure but I will die trying to find one.

And you’re probably headed for a darn interesting life. Just remember to keep checking with yourself that you’re life is still your own (Uncle Nomis’s tip for the day)

[Ches]

Uhm, let me add something here,.. I sound kinda pushy up there, and I was never implying one should dwell or focus purely on their injury. I think that would be a shame. There is without a doubt more to life.

In my attempt to persuade readers to educate themselves and others I was literally talking to the "readers" not you guys who are active. You guys are contributing whether you realized it or not. Simon, despite my attack on you personally, which I apologize for. You have made a major impact. And of course, one of my favorite people, someone I dont even know..Nomis! You two are great.

So yeah, I had my coffee. Im cool now! Sorry for such a bold post, but what the hell. Its just some spice, you guys would be bored without me! J/K

[Apparelyzed]

Hi Ches,

No need to apologise, you were just asking for an understanding of my view on why finding a cure isn't the "be all and end all" of my life anymore. Although I do still keep my eye on the cure world.

Hopefully my answer will help you and others know where I'm coming from.

Simon

[smokymtn memories]

I must admit, I'm of the generation that agrees with the more "seasoned" side of this debate.

I hope to get better, will do what I can, but...........my life has to go forward.

I envy and appreciate the young ones like Ches and Barber. I wish I had your energy. Fight the good fight and don't let anyone make you a "lab rat".

[barber1]

I must admit, I'm of the generation that agrees with the more "seasoned" side of this debate.

I hope to get better, will do what I can, but...........my life has to go forward.

I envy and appreciate the young ones like Ches and Barber. I wish I had your energy. Fight the good fight and don't let anyone make you a "lab rat".

"Go Forward" Only way to go!!

it is very nice to hear perspectives from the "seasoned" side. After being set into a wheel chair it helps me wake up each day thinking that one day maybe just someday I won't be in the WC. I feel it is my duty to do what I can in anyway to help people with SCI. 30 years from now and in the WC I imagine my life will have advanced, experinced and enjoyed the ups and downs life has to offer. Like Chirstopher said, "I have always been a supporter and advocate of helping a cause this time the cause found me" well something of that nature. And that's how I feel.

[HiltonP]

I also adopted the strategy of not waiting, or yearning, for a cure. And it was, quite literally, a “strategy”, i.e. a calculated decision.

When I moved from schooling into employment thirty years ago I took a long hard look at my life and all that lay ahead for me. I could have decided to opt for the cure, and focussed all my time and energy on keeping myself in shape and trying out all the healing ideas (but then be financially dependent on my family), or I could opt for a lucrative career, employment, and financial independence (at the cost of time for personal health). I chose the latter and, personally, have no regrets. My career took its toll on me physically, but in my case I have no regrets and I would do it all again in a heartbeat.

There has been no cure. I would have devoted countless hours and family money to physio. I would now be a dependent. Instead I have lived a fruitful and satisfying life, happily married, travelled the world, and rely on no-one (not even the State) for financial support.

I do not see my decision as having a downside. The real downside would have been to have waited for the cure only to find it never arrived, and in the meantime life had passed one by. It’s like waiting for a bus which is never going to arrive.

My only real anger with this subject is that every “generation” of disabled is being told that a cure is on the horizon. They were telling disabled people that 20 years before I was born, they told me, they told people who were disabled 20 years after me, and they’re telling it to folk who were disabled last month. I do not believe that is ethical.

The cynic in me also questions whether, if a cure was found tomorrow, the medical industry would stall the process. A cure would pose a huge threat to what is a massively profitable industry.

[barber1]

I think that living your life with the idea that cure someday is the best way to approach SCI. It's like the latte effect in the Stock Market you put $3 a day away and invest it for 30 years, instead of purchasing a latte you would have a nice investment, you devote in someway/anyway 5 minutes a day to help care/cure parlysis that would be a nice investment also.

[rkzenrage]

I am fighting against the ignorance against ALL forms of stem cell research in every way that I can.
I cannot be cured, I don't just have an injury, my problem is genetic.
But, it could help me a great deal and those that fight against scientist that know FAR more than they ever will need to be fought against at every turn and stop, and I do.
I made videos and post them on the net. I talk to individuals and have talked to groups and discussed it with my students when I was a teacher.

Not just a cure, but relief, I fight for the legalization of marijuana as a medicine as well and it needs more soldiers.
NOTHING helps with muscle spasms, nerve damage pain and spasms, loss of appetite, nausea (Marinol, the synthetic, causes more to be ill than it helps. I am one of them) and sleeping without lasting side effects (that it kills brain cells with moderate use is a myth)... better than marijuana.
No drug, no therapy, nothing.
Those that want it to remain illegal want those like me to continue to suffer... that is a fact.
I, and others like me who care fight for that as well.

http://www.norml.org/

Edited by rkzenrage, 05 October 2007 - 05:40 PM.

[barber1]

http://abcnews.go.co...=3891547&page=1

Human Embryonic stem cells withou the embryo

[najib sani]

testing,,,

[najib sani]

hi all,,,i am doing my PhD research in making Furniture-sculpture as a rehabilitation medium in Art Therapy for Central Cord Syndrome Patients. i would like to communicate to gather information for data collection.i hope i can get a positive respond.cheers.

emailtonajib@gmail.com

[edlee]

What a wonderful subject. I would be very interested in hearing more.

I think that you will find many on this site who feel as I do. Please consider asking any questions, here, so that everyone will be able to give input.

It would, I think, be benificial to all and a good read as well.
ed

[Ches]

Najib.. Central Cord Syndrome just happens to be something Im familiar with. At the time of my accident there was a girl with me who suffered CCS. We're best friends, went to rehab together and currently live together. I like to think of her as my better half... haha, get it? She's all legs and I'm all arms. (In a functional sense) Anyways, ask away and I'll see if I can be of any help.

Edited by Ches, 23 November 2007 - 10:13 PM.

[najib sani]

Najib.. Central Cord Syndrome just happens to be something Im familiar with. At the time of my accident there was a girl with me who suffered CCS. We're best friends, went to rehab together and currently live together. I like to think of her as my better half... haha, get it? She's all legs and I'm all arms. (In a functional sense) Anyways, ask away and I'll see if I can be of any help.

Hi, if i may ask my first ever question in this forum:

with the condition, do u feel any impact of stress especially when you dealt with public? i mean, have they ever gave some kind of a look because of your condition,for example? i find that(maybe it defers in different culture) people like to give a' skeptical stare ' as if the disabled people (CCS,etc) are not human?(please excuse me if i have a bad english)

[Ches]

Its the stress of a stereotype that makes things frustrating. With the exception of educated individuals, the common civilian interprets Physical disabilities as a mental issue.. aka. retarded to an extint.

That is stressful for all, not just CCS.

CCS is a peice of cake compared to other forms of SCI's

[najib sani]

normally, what kind of physical rehabilitation for the CCS patient?

[Ches]

She did lots of Occupational Therapy. Simple things, task and obstacles often assigned to recovering stroke victims. She had to learn Range of Motion again, as she lost of flexibilty, biceps, and triceps. Her wrist didnt work like before, and the most simple task was a strain. She had to stack cups, "wipe" like motions, weight lifting and work with resistance bands and training. Her coordination was just about the other thing left in tact, but that means nothing when you dont have the strength or capability to display it.

[SCIinLondon]

Hey guys, just recently found these forums though I added apparelyzed to my charity myspace a while ago. Better late than never however.

As the founder of a cure research charity I have to say that I 100 percent believe in a chronic cure, i.e a 'cure for all'. If an injured individual looks after their body, eating well, standing, riding an FES bike etc, then I see no reason why a regenerative therapy would not be of benefit to them. For more established injuries, osteoporosis treatments for one are part of a multi-billion pound industry Worldwide and a large number of labs are working to solve this problem - one that affects so many. [It may surprise you to learn however that most injured individuals lose the largest amount of bone density within the first 9 months of injury] FES training can address muscle atrophy in most instances [lmn injuries excluded due to the neuronal damage but that is also being addressed in research labs], scoliosis is treatable to a degree etc etc. Once the regeneration issue becomes surmountable, many so-called potential secondary issues will fall in line.

The fact is, yes people have been told that 'a cure is X amount of years away' for many many years. That was unjust because promising therapies are only NOW coming to trial, with a good few slated for 08'. With a clinical trial network in place within a country, a successful and safe therapy can be fast-tracked. The mandatory phases of a trial needn't take multiple years, meaning that potential cures needn't languish and bypass many who need them yesterday. Running a charity and researching is only a part of my life. I am a full-time mum and also lead a busy life aside from keeping fit and raising my daughter. My point is, making the most of your life and working toward a cure are not mutually exclusive - you can get a lot out of doing both and at the same time.

I network with a good few researchers in my job and I can wholeheartedly tell you that in my humble opinion, there will be something concrete before too long

Ches, Barber and anyone else looking to recover, live your life like there will be no tomorrow but keep hoping and striving, it will happen

[najib sani]

Hey guys, just recently found these forums though I added apparelyzed to my charity myspace a while ago. Better late than never however.

As the founder of a cure research charity I have to say that I 100 percent believe in a chronic cure, i.e a 'cure for all'. If an injured individual looks after their body, eating well, standing, riding an FES bike etc, then I see no reason why a regenerative therapy would not be of benefit to them. For more established injuries, osteoporosis treatments for one are part of a multi-billion pound industry Worldwide and a large number of labs are working to solve this problem - one that affects so many. [It may surprise you to learn however that most injured individuals lose the largest amount of bone density within the first 9 months of injury] FES training can address muscle atrophy in most instances [lmn injuries excluded due to the neuronal damage but that is also being addressed in research labs], scoliosis is treatable to a degree etc etc. Once the regeneration issue becomes surmountable, many so-called potential secondary issues will fall in line.

The fact is, yes people have been told that 'a cure is X amount of years away' for many many years. That was unjust because promising therapies are only NOW coming to trial, with a good few slated for 08'. With a clinical trial network in place within a country, a successful and safe therapy can be fast-tracked. The mandatory phases of a trial needn't take multiple years, meaning that potential cures needn't languish and bypass many who need them yesterday. Running a charity and researching is only a part of my life. I am a full-time mum and also lead a busy life aside from keeping fit and raising my daughter. My point is, making the most of your life and working toward a cure are not mutually exclusive - you can get a lot out of doing both and at the same time.

I network with a good few researchers in my job and I can wholeheartedly tell you that in my humble opinion, there will be something concrete before too long

Ches, Barber and anyone else looking to recover, live your life like there will be no tomorrow but keep hoping and striving, it will happen

HELLO SCIinLONDON,
CAN I GET YOUR EMAIL ADDRESS AND OR ANY CONTACT DETAILS?I AM A PhD CANDIDATE FROM UNIVERSITY OF TASMANIA AND MAKING A RESEARCH IN RELATION WITH PARALYSIS,ART THERAPY AND SCULPTURE. I HOPE I CAN CONTACT YOU. MY EMAIL ADDRESS IS: emailtonajib@gmail.com OR IF YOU HAVE A YAHOO MESSENGER, PLEASE DO NOT HESITATE TO ADD ME : HOCUSPOCUSS2000@YAHOO.COM I HOPE WE CAN ENGAGE A DISCUSSION TOWARDS THIS ISSUE. KIND REGARDS,

NAJIB

[carole338]

I’m sure I am still considered a new SCI person since I haven’t reached a year with my condition. I also want to know what others are doing to cure themselves. I know I do exercises lying down sitting up, and standing. I push myself until I hurt. Sometimes I can’t sleep because of my leg muscle pains. Make no mistake this is not a complaint. I know how fortunate I am to have them.

I read about the operations in Europe and China that claim success. When I spoke about them to my husband he was enraged. He reminded me of his role in my life. He is my husband, my lover, my friend, my psychiatrist, my caregiver, and my legs to the outside world. He does all these things unconditionally. How could I possible endanger this relationship by gambling my current condition? What if I got worse? What if I lost my current capabilities and had to ask for even more help. I know he would be there but at what consequence. I am a lucky woman to have what I have, including the wheelchair life. I run between a happy life, making the most of it, to a sadness so deep I don’t know how I’ll get through. Fortunately I have a family that tries to keep the abyss away and give me purpose

But I do believe in being that labrat as long as there are no possibilities of major and permanent setbacks. I do hope I will qualify for tests and rehab studies that are suitable for me. I am an excellent candidate, even at 65. I keep up my strength and body mass with exercises. I would like to know what equipment others are using.

Carole

[Eric]

But I do believe in being that labrat as long as there are no possibilities of major and permanent setbacks. I do hope I will qualify for tests and rehab studies that are suitable for me. I am an excellent candidate, even at 65. I keep up my strength and body mass with exercises. I would like to know what equipment others are using.

Carole

I also believe in being a labrat as well Carole.I'm on a dozen of research lists at U of Michigan and have participated in a few. Nothing very interesting, but I'll help where I can.

Every couple of weeks I'll do a weekends worth of web-research to see whats new on the stem cell front. It seemingly is becoming closer to a reality that SAFE stem cell therapies are on the horizon. I have been hearing rumors of therapies and/or trials using adult stem cells in the US are on the table in the next year or two. I have been keeping my body and mind ready and in shape for either natural recovery,regardless of my Drs negative diagnosis, or any medical procedures that may come along with a 'cure'. I'm willing to try darn near anything to regain bowel/bladder and my hands.

I have been using an FES/electrical stim bike to add and keep muscle tone and bone/joint strength, not to mention the night and day difference benefit to spasticity. Also working in therapy on all other muscles. But most importantly, and most difficult, is maintaining a positive attitude that I WILL recover, however as nieve as that my be. But I am far, far too stubborn to give up!!

[SCIinLondon]

Hey guys, just recently found these forums though I added apparelyzed to my charity myspace a while ago. Better late than never however.

As the founder of a cure research charity I have to say that I 100 percent believe in a chronic cure, i.e a 'cure for all'. If an injured individual looks after their body, eating well, standing, riding an FES bike etc, then I see no reason why a regenerative therapy would not be of benefit to them. For more established injuries, osteoporosis treatments for one are part of a multi-billion pound industry Worldwide and a large number of labs are working to solve this problem - one that affects so many. [It may surprise you to learn however that most injured individuals lose the largest amount of bone density within the first 9 months of injury] FES training can address muscle atrophy in most instances [lmn injuries excluded due to the neuronal damage but that is also being addressed in research labs], scoliosis is treatable to a degree etc etc. Once the regeneration issue becomes surmountable, many so-called potential secondary issues will fall in line.

The fact is, yes people have been told that 'a cure is X amount of years away' for many many years. That was unjust because promising therapies are only NOW coming to trial, with a good few slated for 08'. With a clinical trial network in place within a country, a successful and safe therapy can be fast-tracked. The mandatory phases of a trial needn't take multiple years, meaning that potential cures needn't languish and bypass many who need them yesterday. Running a charity and researching is only a part of my life. I am a full-time mum and also lead a busy life aside from keeping fit and raising my daughter. My point is, making the most of your life and working toward a cure are not mutually exclusive - you can get a lot out of doing both and at the same time.

I network with a good few researchers in my job and I can wholeheartedly tell you that in my humble opinion, there will be something concrete before too long

Ches, Barber and anyone else looking to recover, live your life like there will be no tomorrow but keep hoping and striving, it will happen

HELLO SCIinLONDON,
CAN I GET YOUR EMAIL ADDRESS AND OR ANY CONTACT DETAILS?I AM A PhD CANDIDATE FROM UNIVERSITY OF TASMANIA AND MAKING A RESEARCH IN RELATION WITH PARALYSIS,ART THERAPY AND SCULPTURE. I HOPE I CAN CONTACT YOU. MY EMAIL ADDRESS IS: emailtonajib@gmail.com OR IF YOU HAVE A YAHOO MESSENGER, PLEASE DO NOT HESITATE TO ADD ME : HOCUSPOCUSS2000@YAHOO.COM I HOPE WE CAN ENGAGE A DISCUSSION TOWARDS THIS ISSUE. KIND REGARDS,

NAJIB

Hi, Sure thing - will shoot you an email

Kind regards