The effect of hope

[imported_admin]

An anonymous poster on the Cando Research Forum asked:

Has an experiment ever been done where...given a group of complete spinal cord injuries, no special treatments in ICU...they were told the WOULD recover function? They were given intense rehabilitation including FES of paralyzed muscles, made to stand errect at the earliest possible time, and given biofeedback on their paralyzed muscles?

I wonder if there would be an observable difference in functional outcomes between this group of patients and the "control group" given the standard set rehab "get used to it" lingo?

[Wise Young]

The clinical world apparently believes that false hope may lead people to become discouraged when they do not recover, that such people can become despondent and even commit suicide. So, most clinicians tell people after spinal cord injury to accept their condition and that they will not recover. A majority of people that I know with spinal cord injury have recovered more than their doctors told them to expect.

Optimism may lead to success but pessimism is often a self-fulfilling prophesy. The pessimism can be induced by an authority figure and is much more powerful than most of us realize. There have been a number of studies on this subject. If an authority figure induces pessimism, it is called a nocebo. This word is the opposite of placebo where a person expects benefit and gets better as a result of the expectation.

Examples of nocebo effects include people getting ill or even dying when they receive voodoo curses, a higher incidence of colds in people who have been told that they have been exposed to a virus even though they were not, and people losing weight and getting ill when they were mistakenly told that they have cancer...

I have been worried for some time that the standard clinical practice of purveying pessimism to people and their families may have a nocebo effect on their recovery. At several recent meetings, prominent scientists have in effect said that they think that the standard rehabilitation process may be teaching patients to sit in wheelchairs instead of trying to walk.

In India, I came across a really interesting difference in attitude towards spinal cord injury. They really don't have rehabilitation as such in India. A neurosurgeon friend in India had to organize his own rehabilitation service for the hundreds of spinal cord injury patients that he operated on. His department rented a floor of a building and set a bed and cots for family members to come in and help in the rehabilitation process. His message to the patient and family? Walk or die. Most walk.

On the other hand, I don't think that there is a strong placebo effect in spinal cord injury. Almost all people with spinal cord injury have tried some drug or other treatment that they believe might help them with their recovery. It may be vitamin or other treatments that should not have much effect. Perhaps a placebo effect does not occur because thinking recovery is not enough. Recovery requires a lot of work.

However, I want to emphasize that work alone is not sufficient to restore function in many people. Regeneration and intensive exercise will be necessary. If thought alone or optimism were sufficient to restore function, most of the people who post in this forum would now be walking.

Wise. o

[Carl R]

it is much stronger in my opinion than the placebo effect. I read a story a few years ago that said that " it takes 48 complements to make up for one insult ". While not directly related, it does show how much we dwell on negative vs. positive.

[Curt Leatherbee]

To Assume the worst and hope for the best. I think many people who are banking on the Cure for SCI could be in for a real dissappointment as they get older and are waiting, waiting ,waiting. I Assume that I will become an old man as a Paraplegic, but I hope for a Cure to pull me out of what could be a better life if my body was able to function as it was meant too.

I am in the process of buying another business and my main motivation for doing so is to be able to donate more money towards the Cure for SCI. If this business is as much as a success as my last Venture, I will be donating a Boatload of money. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[Wise Young]

What a wonderful thing you are doing. How can we patronize your business? Wise.t

[Birde]

One of my favorite authors in regards to hope is Norman Cousins...Head First the Biology of Hope and Anatomy Of An Illness....GREAT READS!!! Also Dan WakeField Expect a Miracle, and Returning!!!! I f one believes that "this is it, no hope, no future" they live that way, no reason to want or need for more. There is a need for doctors to say that your limits are what you set for yourself. Doctors are not God. They don't know for sure, many have seen things that they can not explain.

[Curt Leatherbee]

I am Opening an eight bay Automotive Service Garage with my Brother. I had run a Service Station for 12 years, but being open 16 hours a day was really getting to me and I had no partners or family to help out with the business, sometimes I am amazed I made it 12 years, all my customers were very upset when I sold out to a Local chain of Service Stations. We will be doing minor and major service for both Imports and domestic Cars. The area we are opening in has a good amount of money, so as long as we do things right, we should do well. My motto is fix the Cars right, the Customers will come.

My main fear is that my Brother can be sometimes too much of a know it all and is a lot younger than me (only 26). It seems like sometimes he has to learn things the hard way, my fear is that when he makes major mistakes, it will be at my expense.

Birde, I feel that the chances of a Cure are not very high within the next ten years, everyone feels differently on this subject. It just seems to me that regeneration of cns nerves and getting them to function again is a highly complex thing. I had hoped for years that something would come along that worked and would make things just happen without knowing the exact reasons, like a simple injection of Stem Cells into the cord and just have regeneration start to happen without even knowing exactly why, but it seems like at this point all the simple things have been tried and appear not to work.

Anyhow, it seems to me that a far higher knowlege base than what we currently have is required and the only way that will be attained is through research and research requires money. So the more money that is raised the higher our knowlege base will be and therefore the closer the Cure.

Like what has been discussed over and over on other message boards is that everyone deals with things differently, for some thinking the Cure will come next year works, for others in five years and others never at all. I guess people just have to believe in whatever they are comfortable with and live life the best they can in the present day with the way things are today.

[This message was edited by Curtis on July 26, 2001 at 03:20 PM.]

[etexley]

Curtis, you are da man! You contribute in your own way to our progress towards getting out of these silly wheelchairs. I agree...

we each do what we can to insulate our mental states from depression. I need to know every day that I have done what I can to learn more about how to improve our lives, and push towards a cure for this silly problem.

Eric Texley

[DA]

eric,
curtis is not my man...lmao. http://sci.rutgers.edu/forum/images/smilies/biggrin.gif