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.
AAN Advocacy LeadershipAs 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.
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.Have you considered posting to epilepsy.com?
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.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.
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:
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 AEDs. 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.
Accepted into the American Academy of Neurology - Donald M. Palatucci Advocacy Leadership Forum.
I found Dr. Phelps email address listed on this page:... I do not know how to reach the AAN and send them an e-mail.
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).Would you please send this letter to them? It will be from me.