Is ASHA’s Spasmodic Dysphonia (SD) position a voice racket?
A letter to SD patients.
The American Speech-Language and Hearing Association (ASHA) misinforms, misleads, misdirects those with the problem called Spasmodic Dysphonia (SD) to these websites of special interest, the Medical dystonia association, and the National Spasmodic Dysphonia Association (NSDA). ASHA’s website directs those with SD to the websites to seek Botox for SD, and/or surgery. The NSDA guarantees there are no cures of SD. The NSDA is given generous donations of money from Allergan the maker of Botox.
The position by the medical dystonia association, and the NSDA is incorrect, and has been incorrect for over 30 years. There are cures of SD. SD is once upon a time psychiatric, now neurological, and neither approach reports a single cure of SD ever. Not in over 130 years. Not one single cure of SD by medical intervention, ever. Meanwhile, ASHA guarantees, too, that SD is incurable in the face of ongoing cures of SD by my approach Direct Voice Rehabilitation (DVR). My approach is not speech therapy. Speech therapy has no cures of SD, and ASHA says so, as do those doing speech therapy.
It seems that an alternative approach, a choice of SD treatment be offered those with SD other than the assurance of doom and gloom for life, with a high suicide rate as well for those with SD. Perhaps DVR be given those who seek informed option, informed choice for their SD condition by ASHA? ASHA’s Dr. Jeri Logemann, President in 1994 has written to me indicating that ASHA’s SD position, there are no cures of SD, that SD is a dystonia, and that Botox is the treatment of choice was reviewed by Dr. Christy Ludlow of the National Institute of Health (NIH), Dr. Arnie Aronson of the Mayo Clinic, and the NSDA. Drs. Ludlow and Aronson deny they were involved in that ASHA position outcome. Dr. Ludlow writes. “I was not involved in establishing an ASHA 1994 position…”, and adds, “I was not aware that ASHA had a position statement in SD.” Dr. Arnie Aronson in an exchange states that he was not involved in the ASHA 1994 position.
This leaves only the NSDA. Dr. Logemann says that she cannot recall who was involved in the NSDA. Drs Ludlow and Aronson do recall they were not involved in the ASHA SD position of 1994. Dr. Logemann and other presidents of ASHA have maintained that ASHA is free of special interests and foreign influences dictating ASHA’s position on various topics. This is not true of SD. It seems to me that the NSDA given generous donations of money from Allergan, the maker of Botox has influenced, runs and owns the ASHA position on SD. In simple words the ASHA position on SD is rigged in favor of special interests and foreign influences such as the NSDA, and Allergan the maker of Botox concerning SD.
ASHA remains devoted to no hope for a cure of SD. DVR provides hope against hopelessness, and cures of SD for over thirty years. The cures of SD by my approach DVR are documented and include follow-ups covering a span of years, up to thirty years, to verify that cures of SD prevail, and that SD is not a neurological problem. DVR cannot cure a neurological problem. It can cure a non-medical problem and SD is a non-medical problem from my over 30 years of documenting cures of SD. My SD cases diagnosed by the most prestigious of medical centers and elite and crème de la crème in medicine.
Why do I write to you? To ask that you provide SD patients with choice of treatment for their SD linking my website to ASHA’s treatment sources, and to cease guaranteeing SD as hopeless or neurological.
My website presents verified, documented, proven cures of SD for patients with SD to choose their treatment. ASHA’s link to the NSDA or the Dystonia Medical Research Foundation (DMRF), botox or surgery, and speech therapy, all afford only coping, not curing. DVR helps cure SD, and the list of cures and recoveries are presented for your review and consideration.
Why do I write to you at this time? Because Joanne Jessen the Editor of ASHA Leader, and its Chief of Publications, who demands that I not report cures of SD, objecting to the word “cure” when it is precisely what I am reporting, cures of SD. Cures inherently prove SD is not neurological or medical. DVR is non-medical and cannot cure a neurological or medical problem. SD I find belongs in the ASHA field, for those who are well trained in voice rehabilitation, and perhaps DVR.
I decline to write a report on SD for Joanne Jessen or any of the ASHA journals because they are of the view that the word cure is an anathema, and inappropriate for a report. Not so. It defines the SD condition as other than medical, and therefore allows those who are non-medical to look to cures, not coping for SD.
Because of Joanne Jessen’s refusal to allow cures of SD to appear in ASHA Leader, or other editors to appear in ASHA journals, I am writing to you in the foundation to ask that you review what is happening in the name of ASHA for SD, and if you will, bring me in for open discussion of cures of SD by DVR. My cures of SD are real, and proven, and documented. Perhaps you will allow my DVR to be a link for those seeking choice of treatment for SD.