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Carol Schoaff's Story
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As the result of a thermal damage from a car fire, Parkinson’s, a stroke and non-usage, my mother, Joan, lost her ability to swallow food safely for two very long years. She had lost some of her health due to the severity of the accident but to add to her suffering, this Food Network addict had to watch the eating world from afar. Months turned into years. Her ENT kept on saying, "Come back in a couple of months. Maybe her swelling will go down enough”. I was weary of his broken record response. I said to him, "Dr. (Smith), where is the best swallowing expert in the country? I don’t care if we have to fly her there.” He said he’d look into it. Via my internet search and his further research, we both came up with a specialist who was in San Francisco - she was only about 30 minutes away. Now why in the world did he not have her in mind all along? Also what would have happened if I had not pushed the question? Nonetheless, we got an appointment to see this BRS-S expert and, within about four or five months time, which involved a very regimented plan of exercises and follow-up, my mother was eating anything and everything. What a wonderful turning point in my mother’s life! My mother and I always loved going out to lunch over the years and I had all but given up on being able to do that again.

Being an advocate for the life and health of a dear one is such a heavy burden. You have no choice but to trust caregivers and healthcare professionals but you have to also realize that these healthcare professionals are also imperfect humans working in an imperfect medical system. I was dumbfounded that I had to drag out the information from an experienced ENT and also find out the information on my own. I also realize that there are so many people who resign to the fact of their condition and that’s only because they don’t know of the resources that exist. I now realize that the swallowing disorder field is totally under-recognized and misunderstood. I also realized that there are way too many caregivers and healthcare professionals who think that they are competent in their knowledge and treatment of dysphagia but they are, in fact, very dangerous.

If only more people could be made aware of the importance of having a qualified swallowing specialist. It really is a matter of life and death as well quality of life. Because we found, finally, a qualified swallowing specialist, my mother’s last three years of her life had so much more joy and she left our family with so many more wonderful memories.