Where is SCI Forum?????????
 

Why was the Spinal Cord Injury forum deleted? While we did not have much traffic, the are people who are looking for the information posted there, and the issues are NOT the same as for spinal disorders. I was out of the country and came back to find it gone. Guess I will send people over the the original Braintalk or to CareCure and tell them to forget about this site as far as NEUROLOGIC (not orthopedic) disabilities.

After some seaching, I see that SCI has been relegated to General Health Problems and Rare Conditions. That is not an appropriate place for it. It is the number 2 disabling condition for adults between the ages of 15 and 30 (after MS) and there are at least 300,000 in the USA alone living with SCI. Many of the conditions still listed on the regular forums are much more rare than this. I guess I am the only one that that cares about this, but it is a joke to call a forum "Neuro"talk and have SCI stuck away in some corner.

i am sorry that you feel that way. i don't think your statement :joke to call a forum "Neuro"talk and have SCI stuck away in some corner. is a very fair one, but you are entitled to it.

we are a pretty new forum who is growing the wants and needs of it's members. we are not a mirror site to other forums and may not have the same forums they do. we might also have different ones.

as you can see from the announcement thread : http://neurotalk.psychcentral.com/announcement.php?f=3

some of the forums that were not being used much yet were moved. they are sub forums that will be moved back out as the need arises. rare or not is not the issue.

CureCare is an awesome for sci. i have even posted the link to there for one of our members who's son was injured. he has a long thread on the new spinal cord injury forum there.

K*L*D,

I also care about SCI and the SCI forum. And, too, I care about CareCure (which is where I learned much about AS and SCI) - by reading posts by none other than yourself and Dr. Young :).

I'm not giving up on or overlooking the SCI forum here; I think that Curious explained it well...

Some forums were relocated as sub-forums. It doesn't mean it's permanent, from what I gather.

I hope that you will continue to visit and contribute to the SCI forum here. I do learn quite a bit from reading your messages.

Hi Bobbi and K*L*D

yes, DocJohn has indicated that if the forums that were not being actively used become active again, he will move them back out from subforum status to full forums
sooooo
all the more reason to keep posting:)

Also, as Doc has clearly shown, he is very willing to heed member requests, and so if you feel the SCI forum needs to be re-instated to the main index, why not just PM him with the request!

an idea

would SCI work better under Spinal Disorders as a subforum, rather than as a sub in the General forum?

The illusion that this forum is a new entity in the world of the WWW is formulated on a false pemise that we are different.

While there can be a relatively and free site to 'talk' in it is not different in it's basic makeup.

No it is not Braintalk but it is in reality a copy of Braintalk as is almost all the other Neurological sites out there. Now that is good in lots of ways and not so good in others...............but

one thing is true and that is they are willing to hear you speak here and that is not the case at other sites.

So then if you disagree with the things that are happening why don't you try and just maintain composure and talk to John about what the problem is as you see it.

I myself don't agree with what is happening on the site in all of the sub forums but I leave it to him as it is his site.

If others of the sites in the sub forums complain I will back them up or disagree with them but it is not my place to argue against them.

there are so many sites and so many diseases and conditions out there that to label any one as topic or sub is foolish in my eyes.

The more forums we have the more people we will have. JL has shown this to be true and while there are many unused forums at that site they are used in spurts by many.

This site is getting a lot of IMHO forums that will never serve the neurological needs of all. those that are related to depression an instance. depression is a big problem for many but in the context of another more prevalent disease n their lives it is usually discussed in the original forums.

The one that to me is useless is the bringing in of the chitter chatter that is prevalent in the news of the day. This site is just indicative of your local newspaper in which you read all of the current health news such as cucumber may break out the faces of children if rubbed on the skin.

Wild comment ya but it could be in the feed today even.

But it does serve to build the false total of postings of the day.

So all in all this site needs to have a setup of forums relegated to the diseases and conditions that relate to the members they want to attract, What the members want and need is not the point. If you have what anyone on the net is looking for then you will find that they will come.

Now as to why they have to come fast is beyond me. The other question of why they must have 10 posts is weird for me as well.

John you say this does not equate to you having to invest a lot of money to run and so why so you not have the time to wait.

This site is a copy of Braintalk and that is a fact but almost all of my clothes and furnishings are copies of some designer or another does not mean anything if they are fashionable and stand up to time.

My thoughts are that we need to do away with these sub-forums and stick to the main forums with the names of the varying diseases right out front.

All of the other sub topics such as chit chat and whatnaut should be added after a long time as desire increases for them in each forum.

So if this is going to be a Neurological site then we must state it as such.

If it is going to be a sidebar of a mental health site then say so.

Right now it is just swimming with a swim fin across the web as a second choice to many others and if it wants to swim on it's own then the time is right now with the membership it is to get it straight ond on target.

Then we can head for it

But John what is that target.


***************************************
I was asked for an opinion off line but that is not for me and so it is here for all to see.
Thank you for your time.

Hi Thelma

the reason for the changes was that some had requested a tidier look to the overall boards, with not so many individual forums which were being little used or not used at all

however, certainly from posts here and also PMs I have received, it seems that some members may prefer to have all the forums out as main boards, not subforums,, even tho they may not be very active..

as I mentioned in an earlier post...........by now we know well that DocJohn is the kind of administrator who is very hands on and responds to member feedback.........so

in addition to the posts here, and hopefully PMs that have also been sent to him, I will bring this to his attention as well when he is back online (I am not sure if he has returned from his Thanksgiving visit to family yet) and I am sure he will respond here personally and also be willing to do whatever is needed to provide what works best for the overall membership.

Everyone has been very accommodating when I think about it and every forum is as valuable as the next one, so I say just ask if you feel a change is warranted, K*L*D.

Since the original influx of so many people and frantically busy posting, the site has settled down. I see it more as a demand = supply issue. If a forum has only say 3 posts and another has hundreds or more, then it might appear that the forum with only 3 posts isn't going to be utilized. When the site started there were so many people asking for different things and being very verbose. Sometimes I look around and wonder where those people are now. I think sometimes people take a lot for granted but then I'm a little jaded today and that might be affecting the way I think about this. It's not my site, so I'm just thankful for what I've got. I figure if the SCI forum is going to be used then all one would need to do is ask the webmaster about the changes and it'll be sorted out.

~~~ We might as well reasonably dispute whether it is the upper or under blade of a pair of scissors that cuts a piece of paper, as whether value is governed by demand or supply.

- Alfred Marshall
Principles of Economics, 8th ed., 1920, p. 348.

The feedback is appreciated and is much needed in order to know exactly what people want so we can discuss it and make changes. It was said before, if there is something you like, dislike, want, need, etc. to make it known so that it is out in the open for discussion and then changes as needed.

I am pretty much in agreement with the members regarding sub forums of this particular size. While I do fancy some sub-forums, for example: Having an Off-Topic Forum with several sub forums for sharing recipes, music, or whatever. The same for conditions that typically have other associating problems or symptoms (having a sub forum for those in their designated condition area).

Oops, look at me thinking outloud again! Sorry. :( My hand swelling finally went down and I'm on a rampage now.

Anyway, this has been brought up in the moderator area (thanks Chemar!) and I'll be chiming in after I finish blabbing away here. As already stated, the best way to express changes you dislike is to make everyone aware of them so we can discuss it and throwing out ideas you may have is encouraged.

It's still going to be a trial and error type of thing when changes such as this are made.

I have high hopes things will fall into place a bit gentler as time passes. :)

Thanks for bringing this up, and I wanted to thank Thelma for that post, too.

We will gladly promote any forum where the traffic is sufficient, but I think and have heard from dozens of people over the year that a long list of hundreds of forums on a single index page is confusing and overwhelming. Our efforts here are to make such a list more usable and realistic to meet most people's needs.

I long ago gave up the illusion I can meet everybody's needs -- that's just not a realistic goal.

Best,
John

Oh no.......I'm so disillusioned! *grin

Oh ye of so little faith.

If that frog doesn't put his leg down once in awhile he will get blood clotting and then what will he do we don't have a bloody forum for that or do we. lol

Must go through them again. want to go for the walk with me there old girl Gee would be nice to ask some of you over for a drink of tea or something..

Lots to be said for these forums but people need so much more. But it never was fair was iT, life that is.

Remember when we were all going to try and meet somewhere and had to deal with that marvel from Australia Frosty. Wonder how she is doing. And poor Giraffe my heart goes out to her.

Trips down memory lane for those who only have keys under their fingers to remember by.

But I'll take that if it meant I would never had met you all any other way.

I'll have "or something" dear lady. :D And no, life isn't fair...we are just practicing. We could request the good Dr. start a blood clot forum...just what he wants, another forum.

I'm rereading a good book "A Reason to Live" by Melody Beattie
and I really like what she says....

"I don't believe we were intended to slug around on the ground, carrying a heavy burden on our backs.

We're meant to claim our wings and fly. Sometimes, to get our wings strong enough to fly, we have to beat on the edges of our cocoon for a while. It hurts, too but the pain isn't the purpose; it's just sometimes part of the path."

Let's you and I just keep beating!

did you notice the change that has been made -
On the General Health & Rare Disorders?
The Rare Disease Subforums is now a separate part but still in the sub category.


Health & Related Topics

General Health Conditions & Rare Disorders (3 Viewing)
Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


Rare Disease Subforums
This is a place to find some rare disease subforums.
Sub-Forums: Arnold Chiari Malformation & Syringomyelia, Chronic Fatigue Immune Deficiency Syndrome, Colloid Cyst, CSF Leak, Lyme Disease, Meralgia Paresthetica, Metabolic Diseases / Mitochondrial, Spinal Cord Injury & Diseases, Tarlov Cyst

http://neurotalk.psychcentral.com/index.php

We hope this change will make it easier to find and use.

Discussions are always welcome.

I like the new setup jo55 posted about yesterday. Looks good! And I like also that sci, which started this whole thread, has now been moved back "out" as a subforum of: Spinal Disorders
Sub-Forums: Spinal Cord Injury & Diseases
It all looks very nice, easy to find and access, and hopefully addressing everyone's concerns.

Spinal Cord Injury (SCI) does NOT belong under spinal disorders. While some people who have spinal cord injury (which involves paralysis, loss of sensation, bowel and bladder and sexual dysfunction from spinal cord damage) also have had (as part of their original injury) a spinal (bone, vetebrae) fracture or dislocation, many have not. Spinal cord injury and disease is not an orthopedic problem as are spinal disorders. Spinal cord injury is a neurologic condition, and includes mechanisms other than just trauma such as spinal cord abscess, spinal cord stroke, probable viral infections such as transverse myelitis, polio and some forms of MS as well as conditions such as synringmyelia and herditary spastic paraplegia (HSP).

To stick it under spinal disorders is sort of like putting Volkswagens as a subcatgory under Chevrolets. You might as well just delete it entirely and not claim to serve that population, since no one will every find it there.

Thanks and goodbye. I will go back to the original Braintalk which understands the difference.

Oh,well, (sigh), you can't please everyone. I must say again it looks easy to navigate. Just to compare, I checked in at OBT, which lists everything under the sun, and found I was scrolling forever to get down to my Myasthenia Gravis forum.
Besides which, I checked spinal disorder in the dictionary. Spinal is defined as: of, relating to, or situated near the backbone; of, relating to, or affecting the spinal cord; While disorder is defined as an abnormal physical or mental condition. So a spinal disorder would be an abnormal physical condition of the backbone or the spine. To me that would have to include spinal cord injuries. Therefore a very logical place to put sci.
Hugs,

Loisba and others, I totally agree. I was really delighted to see this relocation of the subforum - and it IS an appropriate placement. But when someone is not yet used to subforums (they are still pretty new to me, but I love them more everyday), it may seem like someone is DISCOUNTING your illness or condition - but that is not true.

Medical schools can't have a separate textbook for every disease or syndrome -- they have to have textbooks with many Sections, Subsections and Chapters.

I went over to OBT, having decided to actually COUNT how many forums I had to scroll thru, everytime I was trying to track down an illness (you would be surprised how often I couldn't figure out how it would be described in the forum descriptor.


For instance, while I still am displeased with WHERE the neurological subforums are still grouped, under "other things" rather than neurological Medical conditions .... while prostate and breast cancer are still in the neurological category....

BUT BUT BUT I DID love how this forum software enabled the SubForum section to stand out so distinctively --- at least it is impossible to miss now.

Teri

K*L*D,

I understand what you are saying, and why so. And: I would truly hate to see you leave (here)... because you do have so much experience (as a SCI nurse) and valuable insight.

Possibly? perhaps? what you are sharing, even within this thread, could be info. that people may not have known or been aware of previously.

If you have helped one person, and I think you have, maybe you might want to stick around. It's probable that you'll end up helping even more people.

Already: Dr. John or an admin. has moved the SCI forum from within the Rare Disease(s) sub-fourms. Who knows? Maybe the SCI forum will be moved again - and restored to having its own place within the forum listings so that it isn't wedged.

I'd like to see that, too.

It is by people stating their views and sharing that the admins and mods here see what people believe most beneficial.

I say: Don't go.

I forgot to comment about this the other day, Thelma. My brain isn't what it used to be. :rolleyes:
If you mean the Health news forum, then I have to say I quite enjoy it. It isn't all about silly stuff. I check it every time I come to the forums. That doesn't mean I read every item. Most, or the majority, I skip altogether, but from time to time there is something of interest to me that I've not picked up on my own elsewhere. I subscribe to a number of journals and get other news alerts specific to my needs, but there's only so much time in a day and the news alerts on the Health forum often contain items that I don't get elsewhere. True, some of it is silly stuff, but a lot of the news comes from all around the globe and I tend to be a global thinker and therefore like to broaden my horizons by reading what's happening in other parts of the world. Sure, I can do that on my own, and I do, but I do usually find a few articles a day in the Health news area that are of interest to me. I also often find links attached to articles that lead me places where I've never been and have found some very useful and informative health websites that way.

Sorry, probably rambling. I need coffee to wake up.

Regarding having so many forums that it can become overwhelming when sorting through them all... Most forums with different sections have arrows/buttons on them to allow a user to compact that section if they're not using it and it allows a user to only have one section open at a time, if that's all they want.

I just compacted the whole forum down to just one section... General
So what have we got?
General
Health and Related Topics
Health Conditions A-L
Health Conditions M-Z
Mental Health Conditions
What's Going On?
Currently Active Users
Neurotalk Community Statistics
Today's Birthday (which shows me that Keggy is 26 ;) ) (I live in most of your "tomorrows" so I get to see the birthday lists before the actual day)

So, If I just want to look at Health Conditions A-L, I can just collapse everything else and that's all I see... the headings.

Doesn't anyone else use that feature?
It makes things quite simple if that's needed.

Well,
 

I agree with you Lara... I enjoy the Health News Forum alot.
It is easier for me to navigate it, than trying to find the news myself. I am not
too spiffy on surfing the net. Having it here, saves me time (which is important to me) and effort (since my hands and neck arthritis are getting a flare this week).

I found an especially interesting clip just today:
http://neurotalk.psychcentral.com/showthread.php?t=7662
regarding chemobrain.

This one today is very interesting too:
http://psychcentral.com/news/2006/11...nk-challenged/

I hope to see this forum for a long time here. It is important to me, at least.
Thank you, DocJohn for providing it. ;)

Looks like we were posting at the same time, Lara! LOL

I use forums home to navigate here. I find it works best for me.

I have never heard of "compacting" a forum. I personally want to see where people are..what's up, what's new. Even if it is not
a forum I typically view commonly. I use the net this way, as a learning experience.

Forums home? OK. I have never used that. Will have to figure that one out. I'll have to find it first lol

With the list thing. I really mean that some people can find the long list overwhelming to their senses and it can become confusing. Like sometimes I go to the library or video store and there are so many titles I end up having to leave with nothing or at least with something I didn't want because it becomes overwhelming. Not everyone would find the very long lists of conditions overwhelming, but I know I do sometimes and can imagine other people might as well.

Plus there are people who would finding scrolling difficult for varied physical reasons and it would be helpful for them. I'm not sure if the settings change after one has compacted the list of forums. I'm going to compact them and then log off and see if they save.

EDITED to add: Yep, it saved.

I have to laugh...
 

Lara, about my mind going pfffffftttt...when I walk into a library or video store, or ANY store for that matter. I always thought it was a visual thing...too much to look at blows away your thoughts. LOL
I used to be like that ALOT... Now I prepare and do a pre-visit in my mind...like athletes do...visualize what I really am going for.

Forums Home is at the top of the list. It is less effective/useful at the OBT place where there are sooooo many forums, but it works well for me here.
When things are in flux, growing, changing like NeuroTalk, it is best to use
forums home....then changes are very immediately apparent that way.;)

OK, msrd, you know what a totally inept person I can be. Remember, I owe my avatar to your kindness and experience. I cannot find forums home, can't even figure out what you're talking about. Help! My ineptness is only surpassed by my overwhelming curiosity!! :D
Hugs,

It's just the main list page for now-
http://neurotalk.psychcentral.com/index.php

we are planning a "Home & Welcome Page" at some point

probably after the Holidays we'll have more time to get it going.

Hello !
I'm the guy whose son had a C-5 SCI injury and posted on the SCI forum.
I'm ashamed to say that when I subsequently visited it, I found almost nothing had been posted. I then relegated all of my posts to Care Cure, as I was desperate for answers to immediate issues. I didn't get mad because the SCI forum was disused, I just though that there weren't enough people using it - so I went elsewhere. I hadn't been back to it in a while and was going to check it when I thought I'd lurk in here for the first time.
I was surprised to see that it wasn't where I thought I'd find it.
I'm still not sure where to look for it, but it is of little consequence.

I am of the opinion that if a sub-forum designation exists for little used threads, that's a logical house cleaning decision. I don't have any problems in someone cleaning house. It seems that the tread hasn't been deleted- just tucked away for future use, if needed. If the forum isn't needed, then by all means- get rid of it.
I don't think being angry about it is healthy. Constructive criticism is welcomed here, I believe. A far cry from other sites that dictatorially maintain a heavy hand and abruptness and rudeness are par for the course.
I feel that this is where I'd rather be, than at OBT, but visit there to stay in touch. A quick observation of OBT today will find it not as active as BTC (before the crash) and many members have come here for refuge. I know that I have done so, and am glad I did.

So, IMHO - cleaning house and tidying up is logical and fair.
That's what I hope will continue to be the case- fair and open minded to constructive criticism and suggestions.
A breath of fresh air to me, and I think, to others as well.

There are 3 questions that are used when a person is cleaning old stuff out of their home.

1. Do you need it?
2. Do you use it?
3. Do you love it?

The concept is that you must answer yes to at least 2 questions to be able to reasonably keep the item... this is used to help people de-clutter their homes and get rid of un-used stuff.

In the case of the SCI forum, yes it may have been needed - but it wasn't being used, and if it wasn't being used then how could it have possibly been loved?

The SCI forum is not gone. It is still here because it is needed. If something changes - if it becomes used and/or loved - then it will most likely end up back on the main list of forum topics.

So, those of you who need the SCI forum - start using it. Start loving it. And once it becomes used and loved, it will become a forum again instead of a sub-forum.

That's my 2 cents as a member.
Liz

john -- please reconsider?
 

THIS IS A REPLY TO JOHN ONLY -- THANK YOU. :)

john -- please reconsider?


http://neurotalk.psychcentral.com/showthread.php?t=81

i think it is a big mistake to combine the two for all the reasons kld has posted.


in time, word would have gotten out, and the forum would have become populated.

this is a big loss and opportunity to help others who also need help. isn't that what neurotalk is all about?

john -- please reconsider?
kld is here to help all of us even though she specializes in sci. just look at her previous posts.

thank you --

While I respect KLD's opinion, we moved it for the reasons previously given (house cleaning), not for medical taxonomy reasons. Trust me, a community does not have to follow (and probably shouldn't follow) strict medical taxonomies. It's a *community* of people, not medical white coats.

If/when the forum becomes more widely used, then I will gladly revisit this decision.

Best,
John

thank you for your prompt reply.