Pushing for neurofeedback - discussion

[Bernard]

This thread is for discussing your thoughts (good, bad or indifferent) on the project I started and am documenting here.

[RobinN]

Very, very good project.
Let me know how I can be of help. Writing is not my strong suit.
I do know there is someone on staff at USC Neurology that has some background in the subject. How that can help... I have no clue. Just thought I would throw it out.

[Bernard]

I'm not so sure the actual content of a letter to the AAN is terribly important. You could just write them a single sentence saying you support this project and include a link to the documenting thread. Of course, in your particular case, I would think some reference to Rebecca's thread would be appropriate.

The point is for them to hear an outcry from the epilepsy patient population that this is an important issue - something that is not acceptable to be ignored.

[RobinN]

I will give it some thought Bernard. You know how much I support this therapy, and the impact it has on the quality of Rebecca's life. Having the support here will allow me the ability to step out of my comfort zone.

A great project for 2009

Today's Quote

The world is not moved only by the mighty shoves of the heroes, but also by the aggregate of the tiny pushes of each honest worker.

-Helen Keller

[RobinN]

Sorry I had problems with my server today.

While browsing around on the AAN site (my first time visiting) I found this:

As is often the case for health care providers, close encounters with illness in those we love deepen our understanding of the plight of patients and caregivers, and serve to make us better at our vocation. Such experiences may also inspire us to speak and act for those afflicted, give greater voice and attention to their suffering, and use our influence to make a difference for them and others like them. Though we consider ourselves advocates as part of our profession, I daresay many of us are unaware of the opportunities available to increase the effectiveness of our advocacy.

AAN Advocacy Leadership

Perhaps what we need to do is find those within the medical community that have dealth with seizure disorders in their own families to help create the network needed.

[RobinN]

Are you a member of AAN Bernard?

[Bernard]

While browsing around on the AAN site (my first time visiting) I found this ...

Excellent! I'm sure that will come in handy.

Are you a member of AAN Bernard?

No. I assumed AAN was only open to licensed neurologists.

[brain]

Hmmm - I was looking for the link
for the free subscriptions and I can't
seem to find it; I've been getting it
for years ... And it comes bi-monthly,
free; but your Neurologist / Epileptologist
has to also sign you up - or if you sign
up online, you have to provide your
Doctor's name and ID number. If someone
finds it - please post it because I cannot
seem to find it as I implied ... unless they
had stopped this and only existing members
are eligible only. I had been getting this for
decades and it is very informative! However
it's on everything Neurological, not just
"Epilepsy"... FYI.

But I DO use their e-Library...

[Bernard]

The only page I could find with membership info is this one:

https://www.aan.com/go/membership/join

and I don't see any free options.

I hope you all are considering writing them an email.

[RobinN]

It is on my To Do list

[csheffer]

Have you considered posting to epilepsy.com? By the way, they are just starting a newsletter to which anyone can contribute, which I am hoping will be taken seriously by neurologists. I too am eager for more hard information about neurofeedback and am disappointed by the research I have done so far.

[RobinN]

Bernard, please drop by NFB Nerds group

[Bernard]

Have you considered posting to epilepsy.com?

I would, but I don't feel particularly welcome over there. One of their moderators decided they didn't like my chart and asked me not to reference it any more over there. They chose to censor me while allowing others to attack me and that didn't sit well with me.

Also, Dr. Steven Schacter is editor in chief of the site and I'm not sure just how much influence he wields on the moderation of the site. People don't like it when you threaten their wallets.

By the way, they are just starting a newsletter to which anyone can contribute, which I am hoping will be taken seriously by neurologists. I too am eager for more hard information about neurofeedback and am disappointed by the research I have done so far.

Sounds like an interesting idea, but I'm sure they will have editors screening content. Still, I would encourage anyone who frequents epilepsy.com to post a note about the initiative if they feel so inclined. This is something that concerns all epilepsy patients as far as I'm concerned.

[Nakamova]

Bernard, I am thrilled with your letter to Dr. Christine Phelps/AAN and have sent my own e-mail in support, the gist of which is below:

[Dear Christine:

I am contacting you in your capacity as the Deputy Executive Director for the American Academy of Neurology/AAN Foundation. I am writing in support of a recent e-mail you may have received from the founder of coping-with-epilepsy, a well-established online discussion forum for epilepsy.

Like many others with epilepsy, I am frustrated with the limited treatment options available. While I am fortunate enough to be able to live a seizure-free life on a very low dose of medication, I would welcome a serious examination of alternatives to medication and surgery. In a nutshell, side-effects suck, and any treatment that is efficacious and potentially free of side-effects deserves serious review.

I understand the market forces that have marginalized research into the role that diet, neurobehavioral therapy and/or EEG neurofeedback may play in epilepsy treatment. All the more reason that the AAN should join in advocating for consideration of these treatment alternatives. If the AAN is truly interested in "promoting the highest quality patient-centered neurologic care", and in "keeping the interests of patients first", then its active support for research into these alternatives is a 'no-brainer', and ignoring these alternatives is a betrayal of the AAN's mission.]

Many thanks Bernard, for bringing this and and other issues to the forefront.

[Bernard]

Awesome! Thanks.

[RobinN]

I hope you don't mind that I swiped a couple of your lines.
I want to send this to a few doctors as well.
Any suggestions on content would be greatly appreciated (my passion is my art, not writing)

Dear

I am writing to you today, to ask you a question,

What is it going to take for the medical profession to accept EEG neurofeedback as a valid option for treating seizure disorders?

My daughter, had her first seizure 2.5 years ago, at the age of 14. There was no head injury, or pre warning to this occurrence. We were started on the conventional medical path. Almost two years later, she was worse, and her quality of life was not positive, to say the least.

I have been active in multiple online epilepsy forums. I have met thousands of people with epilepsy and read even more first person experiences. I understand the epilepsy experience. I saw where my daughters life was headed. I did not want to find us ten years down the road, no better, and most likely worse than she was at 16.

It was at that time I began searching for alternative therapies. I made nutritional changes, and supported brain and body health, with vitamins and minerals. I also researched Neurofeedback. What I found was a therapy that could do my daughter no harm, and perhaps would improve the quality of her life. I have created a journal of our experience here:

Neurofeedback - Rebecca's Story

After 6 months of therapy, her seizures have been reduced measurably. Her cognitive functioning in school has improved. Not being on medication, she is able to continue with passions in her life that were questionable while taking anti-epileptic drugs. Medical costs have been reduced. It has allowed us to improve her health from the inside out without drug complications.

I wish I had been offered this option, and been told about nutritional research, from the very beginning. It would have saved us time, emotional distress, and most of all, it would have kept my daughters dignity intact.

Since it is AAN’s Mission to promote the highest quality patient-centered neurologic care. It is time for the medical community to offer choices, and for insurance companies to support that.

Sincerely,
Robin Neudorfer

[RobinN]

While browsing around on the AAN site (my first time visiting) I found this:

AAN Advocacy Leadership

Accepted into the American Academy of Neurology - Donald M. Palatucci Advocacy Leadership Forum.
Daniel Christian Potts, MD

Specialty: Neurology
Group Practice: Neurology Consultants
Graduation: Univ Of South Al Coll Of Med, Mobile Al 36688, (1993)
Residency: Univ Of Al Hosp, Neurology; Univ Of Al Hosp, Internal Medicine
Location: 701 University Blvd E Ste 810
Tuscaloosa, AL 35401
Phone: 205-345-3881
Fax: 205-345-7242

Listed online, so I considered it alright to post here

[skillefer]

...did you?

[Ruth]

Bernard, I looked into neurofeedback 30 years ago. I could not afford it. I was not given as much information as you are giving. I really appreciate. I believe it is a good alternative therapy for epilepsy. The more choices we have, the better health we can have. Most people do not know about the choices we have. That is sad. Knowledge to all epileptics need to be made known. I do not know how to reach the AAN and send them an e-mail. I always fail when I try.

Would you please send this letter to them? It will be from me. I have always felt that neurofeedback is a good alternative. Any alternative available to us is important. What works for one epileptic might not work for another and visa verus. I know more about neurofeedback than I did before. I really appreciate the information.

[Bernard]

... I do not know how to reach the AAN and send them an e-mail.

I found Dr. Phelps email address listed on this page:

http://www.aan.com/go/education

They list contact information for various members on miscellaneuous pages all over their site (instead of listing them on the contact page which would make more sense IMO).

Would you please send this letter to them? It will be from me.

I'm afraid that would rather defeat the purpose. They need to hear from many voices, not just one (even if claims to be a proxy for more).