Neuropenews is an open internet bulletin and it seems we are read not only by neurologists and neuroscientists but also by the lay public. We have namely obtained the occasional letter from a neurological patient.
As neurologists we appreciate the value of the doctor-patient relationship. Furthermore, we always learn from our patients. Traditionally, EFNS has an excellent relationship with patient organisations via the European Federation of Neurological Associations (EFNA), and improvement of care of patients with neurological diseases across Europe is one of the goals of EFNS. Therefore, the Editors decided to open the pages of Neuropenews Forum also to our patients and their relatives.
We shall not solicit contributions, but we shall read all, respond, and publish those with a message to the European neurological community. We reserve the right to abridge the individual contributions.
Letter from Carol Paschall Breiter
written on 10 September 2012
I Speak A New Language Now…
I speak a new language now; one most foreign to my ears and one that I have never come across before prior months this year.
This mode of communication is harsh sounding, strained, slurred and wholly dysfunctional to most of the human understanding and psychic. Just when I mentally formulate an idea, I open my mouth to voice the thought and what utters forth, rather than being clear diction turns out to be sounds never expected and unintelligible in any form! For me it is horrifying! I cannot imagine what it is like for the recipient; the concentration and patience it requires from them.
The real crux of the matter comes when there are moments of actual, coherent clarity and discernible speech and I rejoice. At this time even I have to admit that those moments are becoming less and less. I am also realizing that too many misunderstandings come from my trying to speak the unspeakable for my disease.
Oftentimes, I strain so hard to have my garbled comments be understood. I feel sure all the blood vessels in my larynx will explode from putting forth so much effort! I am feeling that I am turning inward to an unwanted place where no speech can emit forth. Being quiet is not so frightening, but having no option other than that leaves sheer panic. To communicate is to be human. Thank God for I-Pad speech program I am now learning.
What manner of existence is this? I am a prisoner for no crime I committed. Maybe I didn’t ask for it, but I remember well my dear friend, David Gibson, who passed from this same disease. I feel fortunate to have spent quality time at my last reunion at QA with him before he died a short time later.
He, like me, was a positive force who fought the good fight!