is it possible to add a forum for Ataxia/Spinocerebellar Ataxia?

I know these weren't very active at BT, yet would like to see a growing support network here. hard to know where to fit in although so many neuro issues have symptoms of ataxia dealing with a progressive degenerative ataxia be nice to build a support network more specific to this too here at neurotalk.

Or if there is a group here that already fits this 'disease" just point me in that direction.

thanks

How about a place to help us learn...
 

not to advocate per se, but to interact with advocacy organizations [some of whom aren't' usually responsive to 'constituencies' or non-members on HOW WE CAN ADVOCATE our own issues effectively. Be it in the immediate-doc to patient, anciliary staff to patient, patients to community, patients to drug and insurance resources, and patients to state and national representatives.

Sort of maybe, a guest 'speaker' kind of thing? Examples could be'Week one-q&a w/real docs on how to better answer questions they ask? how to know what questions WE should ask, when to be an agressive self-advocate and how to be effective doing so?
On the community, state and national levels -what reps see and hear, and what they would like to hear and are there more impressive formats for us to press our cases?
Well, you get the idea. We all represent many individual and group needs, by condition, but, there are also broader areas we can and should speak up in. We, I believe just need to know the key hows... Most of us are smart enough to go in the right directions. The right way to do it best makes all happier.
I'm not talking pure political here, but so many of us are dependent on subsidy either thru the governments or insurances, that we, being an expensive minority are especially, life threateningly, vulnerable.

Thanks! - j

Forum for Rheumatoid and Osteo Arthritis
 

Is it possible to add a board for Arthritis, Rheumatoid and Osteo, together on one forum?

Thank you! Doc John!

Newcomer's Forum??
 

I just noticed that we don't have a "Newcomer's Forum". Someplace where newcomer's can get guidance and direction about where to post.

It should be located at the very top of the forum lists under "General" section.

At OBT, they called it "New Visitors Click Here!"

We should, of course, pick something different, but it should indicate that it's sort of a front door to the building so people who need guidance can get it.

We should all take turns monitoring messages in that particular forum to welcome new people here.

Barb

Regarding Autism Placement
 

I would ask that Autism be repositioned to Mental Health

1) Diagnosed and treated by psychiatrists, not neurologists
2) Meds, alone or in cocktails, are same as drugs used to treat bipolars & (some) ADHDs and the more serious childhood self-control disorders
3) on OBT, tremendous overlap in parents on these various forums
4) much research considers it more than possible that Autism-Aspergers-ADD/ADHD may exist on a continuum
5) much comorbidity among these various disorders

Thank you very much.
Teri

a private forum for necessary outpourings of grief and rage
 

Dear John (and a hello to Kimmie) ...

I would like to request, please, a forum somewhat like the one Tim described sometime back - a place for venting here, yet a place it would be private and non-disruptive to the normal operating of NT.

OBT has a mod-member dialogue place that I -think- works like this. A member contacts the mods and requests entry to this private forum. They have access to only ONE thread where they can dialogue with mods and reach understandings regarding their questions and confusions.

What I am envisioning would USE this v-bulletin software possibility, but it would be primarily for venting. Like right now, my sister died a week ago, but because of extreme abuse from my family (and my sounding board being away from home for who knows how long), I am in a terrible state of mind where I desperately need to pour out all this. Stuff for which it would be inappropriate to post to any of the forums here - not even grieving & dying. In fact, it would be too emotionally distressing for it to be there.

I figure that if a particular person felt the need for the sense that someone is reading it, we might be able to invite a person or to ask Kimmie for someone to give us a word of support perhaps.

So many of us, the chronically ill and disabled, or the caretakers of the chronically ill and disabled, are lacking anyone in our home or extended environments who we can take these things too. Medicaid does not provide for psychologists or such in the this state. 15-min med checks is it.

I have tried and tried to use blogs - even making those blogs private - but I can't do it. I just feel both too exposed and then, at the same times, too isolated and alone.

I hope you might consider this. You could plunk it down in the mental health section. Sometimes we just need to scream and rage and cry.

Thank you for considering my request.
Teri

adding Myalgic Encephalomyelitis to CFIDS subforum descriptor
 

in reference to CFIDS (338,000 Google hits)
http://neurotalk.psychcentral.com/forumdisplay.php?f=81

Would ask if you could please add the other name rapidly gaining recognition and general acceptance

Myalgic Encephalomyelitis (already 234,000 Google hits)
http://neurotalk.psychcentral.com/showthread.php?t=3856

If you read here - http://uk.geocities.com/me_not_cfs/, you will see how the CDC created CFS to simply group a bunch of symptoms that came to be an umbrella term for a great number of syndromes and illnesses. ONLY Myalgic Encephalomyelitis refers to the neurological illness that concerns the focus of this website.

Thank you for making this sub-forum more recognizable and identifiable, as well as promoting the use of the current correct medical terminology.

Perhaps CFS/CFIDS needs to be subordinate to Myalgic Encephalomyelitis, rather than the other way around?

Thanks...
Teri

1. A Google Scholar search shows
2. 978 citations for CFIDS and only 29 for CFS,
3. 1280 citations for Myalgic Encephalomyelistis.
   
   The need for inclusion of the medical term clear.

Thanks tons, John !!!

about SUBFORUM LOCATIONS (and subforum requests)
 

I think a forum for questions and concerns and such for dealing with Insurance companies, doctors offices and staff, billing, legal, and the other financial issues of having medical and health conditions would be of help for all of us.

possibly a title of-

Medical Billing and Related topics
dealing with doctors office, bills, accounting, collections, etc

a second on Jo's request
 

Jo, I agree that a forum like this could be as important as the Workman's Comp & Social Security sections, a natural for the same area.

I would suggest
Dealing with Medical Beaurocracy
- your records, insurance, billings & more...

Covering how to talk to your insurance company, hospital billing departments, doctors. Advocating for you child or parent. How your pharmacist can hep you. Your legal rights.

These are issues that are regularly dealt with and we had a particularly good (and unique) collection of help on bipolar at OBT (if it ever gets reloaded) that I would happily import over here.

- Teri