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Everyone on this site is so nice.

By Daleri Friday, August 14, 2009

You might think that it would not be that way. I know that this is not a full representation of everyone affected by sz but it is refreshing compared to what is out there on the web. It could be a consequence of what happens when people suffer. They tend to be more considerate or sensitive to other people who suffer.

 

Anyway, I do not have symptoms of sz but I am interested in the way the mind works and the people here are quite inspiring to say the least.

 

I am not so familiar with the medical treatment side of things for sz. It seems to me that medication is used to alter the regular course of events of a person affected. If one medication is not effective another one is tried. My problem is that during the time that the medications do not work, isn't that the same as not being on medication and still having side affects to boot or is it better than nothing?

 

I just feel for the person that has to be constantly medicated. We all know (or should know) that is still not "normal" in any way shape or form even if the medication is considered to be working but it might be better than before. I get a sense that the medications treat the symptoms rather than treating the cause of the symptoms. This is a common mistake of medicine and of other fields as well. If we knew the *root* cause, we could better treat the illness.

 

Some might think the cause is not enough or too much of a certain chemical but there could be logical reasons, controllable reasons, why that chemical is not at the accepted level. We know the person can benefit from counseling but it has to be knowledgeable, symptom specific, effective counseling. The real problem is for the person to hear and benefit from the facts.

 

Genetics predetermines susceptibility for ways of thinking but there are still measures that can be taken and changes that can be made that can result in a different outcome.

8/14/09 6:31am

Daleri I know you are trying to understand the workings of SZ in a mind. We've butted heads before. I am trying really hard not to get angry.

 

My meds don't "alter" my course.... I do! Meds are my lifeline. I cannot live without meds.

 

Yes its true meds treat the symptoms..if there were a cure this site wouldn't be here.

 

You mentioned other measures that could bring an outcome. What ARE they? Is it some secret the government is hiding?

 

Dave

 

8/14/09 8:14am

Thank you for your kind words you had to say about those of us who come to this site. I must agree with Dave on the importance of medication in those of us that have this illness. One question for you is what about all those other illnesses in the world where people need medication in order to live? Let me close by saying if not for the medication I would not be as stable as I am today and for that I ma glad be living in a day and age that my medicine is working for me and that newer medications are constantly in the works.

8/14/09 8:14am

Thank you for your kind words you had to say about those of us who come to this site. I must agree with Dave on the importance of medication in those of us that have this illness. One question for you is what about all those other illnesses in the world where people need medication in order to live? Let me close by saying if not for the medication I would not be as stable as I am today and for that I ma glad be living in a day and age that my medicine is working for me and that newer medications are constantly in the works.

Christina Bruni, Health Guide
8/14/09 8:29am

Hi Janet,

 

Good morning!

 

It is great to hear from you and I always look forward to your wise, thoughtful and sensitive comments.


I agree with you: medication gave me my life back.

 

The alternative is no option.

 

Cheers,

Christina

8/15/09 8:32am

Dave, I don't know of any magic cure for all. I know that many if not most of you need your meds. They must do something even if they don't work as they should. I am not trying to get rid of meds and I don't want anyone blaming themselves for their condition but I would like to know if there is a way to get rid of sz symptoms. My friend was able to do that without meds and I was wondering if what he did would help other people with sz. Sz seems unrelated to anything that we do (besides medication) but there has to be some kind of cause. I find it hard to believe that the mind was working well and then "for no reason" it stopped working as it should. I know the mind is not working as it should but there could be a reason it gets caught in a rut. It tends to follow the same track of reason repeatedly. I am wondering if there is an indirect cause but a cause none the less. The mind is very complex. Its capability could become its own demise if not properly oriented. Also, it may be true that each mind has to work its own way. There is no reason for anyone to blame themselves or find blame as that is unproductive anyway. There is always hope even when it seems there is no hope. My friend noticed that whenever he became intense, angry or in a heated debate, the sz tended to lose its power and influence. It still returned but that bit of repose was reason enough for having the hope that it would go away for good.

8/15/09 10:57am

Hi Janet,

 

Yes, we are living in exciting times and we are learning more about the technical side of things like with sz. If I am not mistaken, good counseling is one of the key ingredients in the treatment. Yes, a good example is diabetes where the person needs to actively regulate his blood sugar. I know that people can get out of control. I know that and one way to save the person is through medication. The more we learn about it, the more we can target the problem. That does not mean that counseling is of no use. It is likely one of the more important things. I also know that a person that has been very affected by sz for a long time would be harder to help especially if the person refuses help. The first step in getting over a problem is admitting that you have a problem. I suppose there are some that would want to take the medicine away but I can see the need for it. In a perfect world, there would be no need for it things go wrong. I am just trying to see what the best way to go about helping people is. There are people with pain that need pain medication. I suppose it is somewhat of a lesser of two evils.

Christina Bruni, Health Guide
8/14/09 8:27am

Hi Daleri,

 

A most welcome post this morning as I sit here reading the Connection SharePosts so I can respond with comments.  You make some good points.

 

However, you state that taking medication is still not able to get someone back to "normal" so I wonder if you used that word to get a response from others.

 

I have written a memoir, Left of the Dial, which I am shopping to literary agents.  If you've read my personal blog I link to in my Profile here, you will see this title comes from the fact that I was a disc jockey on the FM radio in the 1980s, at WSIA, 88.9 FM, a radio station that broadcast left of the commercial end of the FM dial.

 

So the book touches on this quest to be normal and in the end I realized I would always live my life left of the dial in some important ways.

 

The reason it is advisable for people with SZ to take medication is that the medication can halt the deterioration of brain matter and if you wait too long to get treatment with meds, there is indeed loss of brain matter.  A SharePost I'm set to publish as my first SharePost in September will talk about how the loss of brain tissue is observed in people with SZ.

 

Though I would hesitate myself to use the term normal, I do believe I have a defective brain that would revert back to its inherent chaos if I did not take the medication.

 

It could possibly be semantics that I quibble with: I find normal is a loaded term and defective mroe accurately describes it.

 

So it begs the question: What is normal?  How does anyone define normal?  Who gets to decide who's normal and who isn't?   That is the root of the ongoing stigma people with SZ face and are treated to.

 

We covet the things that others who don't have a diagnosis covet: friends, romance, a home of our own, and other hallmarks of a good life.

 

Cheers,

Christina

8/15/09 8:47am

Christina,

 

Let me begin by saying that you do an excellent job with research. I guess that is because of your field of work.

 

There are many people that are not considered normal but they do not have sz. I can see the loss of brain matter with the loss of function as a result of sz but I believe it is more a result of the one track mind issue and the apathy and loss of function that sets in.

 

Someone with sz will never be normal even if he loses all the symptoms because he still knows what he went through and he still has to maintain the belief that sz symptoms are not there so they will not be there.

Christina Bruni, Health Guide
8/15/09 1:24pm

Quite frankly that's a loaded comment that someone with SZ will never be normal.  A person diagnosed with schizophrenia would not dare say that.  What is your intent in saying that?

 

Regards,

Christina

8/18/09 7:49pm

Ask yourself if you can return to the way you were before sz (without blaming yourself or someone or something else). Not being normal is not necessarily a bad thing. There are a lot of people that don't want to be "normal" (ordinary). It is more matter of fact but there is a lot of normalcy that can be had even with sz as you can attest to. My aim is to see if it is possible for people to get back where they were before they had sz or even better. It is not very common but I believe it is possible for some. If some can be helped, it could be that others could be helped. I know it's a tough sell but I have this desire to want to know.

8/19/09 2:37am

Also, a person that recovers from sz is not normal by any stretch of meaning. They are extraordinary. You are extraordinary yourself because of the level of work that you are able to do. Dave is extraordinary because of everything that he has gone through. It is not likely that either of you will ever be ordinary and that is a good thing. Of course the normal that we are defining is "symptom free". That is the goal but even symptom free is not ordinary for someone who has been affected by sz. It is quite extraordinary but in regard to having symptoms or not, it is normal as in having no more symptoms. There is no more fighting the symptoms because the symptoms are no longer there. I don't think that is very common but I do believe it is possible even after having had very severe symptoms. I can't explain it very well but I have seen it happen.

8/19/09 3:02am

A "normal" person does not believe in sz symptoms affecting them. It is weird because tribal people believe in spirits until civilization comes and the spirits tend to "go away". There are clearly physical factors involving sz but it would be nice if the symptoms would also go away with true beliefs. Each mind is different and each person has to navigate their own obstacles from where they are at. It requires a lot of change in the way a person thinks. I am not sure that every person affected by sz will be able to make the changes in beliefs that are needed. I just know that some people can.

Christina Bruni, Health Guide
8/19/09 8:22am

Hello Daleri,

 

I know a lot of people with schizophrenia who do not have symptoms.  It is possible to have a good life even though you are diagnosed with schizophrenia; it is possible to have a better life.

 

You are trying to understand, however, it's not as simple as pretending the voices aren't there.  Nobody should have to suffer for five or ten years if the medication can stop the symptoms within five or six weeks.

 

Regards,

Christina

8/19/09 10:30pm

"pretending they are not there" is exactly what you should not do. That is not what I was suggesting. If the symptoms are there, you have to be honest but you can change the whether they are there in the future. The symptoms are the result of thoughts and beliefs that you have to learn not to think. Just like the indigenous people that lose the "spirits" when they become civilized. The "spirits" lose their power and influence from nothing more than a shift in the person's values and priorities. A spirit means nothing in a Judeo-Christian environment. There are exceptions where there are people that still believe in "black magic" which is an African belief that is quite common among Latin Americans that has made its way into church beliefs.

8/19/09 10:38pm

BTW, my friend suffered from symptoms about five years before he was able to beat them and that was with no help from anyone.

Christina Bruni, Health Guide
8/20/09 9:00am

This will be the last response I send on this thread.  I understand you mean well.

 

I'm still unable to use the word normal or not normal to describe any of this.  And I don't think extraordinary sums it up either though I will concede that's your own take on things.  I simply persisted because I had the goal to live independently and work full-time.  I did what I knew I had to do to achieve this instead of doing what I felt like doing at the time.  Once I told someone, "The fight, the fight, never give up the fight."  The way I see it is that you should not give up the hope that you can recover.  Most people do recover.  I told a rehab counselor at the IPRT where I spoke, when she asked me what enabled someone to recover, that it came down to persistence and desire.  You have to want something soi bad you focus on achieving that goal with a laser precision.  It overrides everything else.  So that you simply do one thing after another, however long it takes, until you get there.

 

Christina

8/20/09 11:37pm

You have done very well and I hope you continue to achieve whatever goals you have. I know that sz is absolutely terrifying and it is as if there is no hope but to prove otherwise is a great achievement.

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By Daleri— Last Modified: 12/17/10, First Published: 08/14/09