Eileen – Rochester, NY

Eileen – Rochester, NY

Photo - Eileen Steele 2014
Eileen is a retired community services specialist who ran a program for people born with developmental difficulties.

My name is Eileen. Six years ago I had a few molars extracted, which took a few weeks to heal. One morning, shortly thereafter, I felt nauseous and had a slight fever. My daughter took me to my primary physician who upon examining me recommended that I see a specialist. My doctor believed I had Dystonia. The next week I went to a specialist who, after testing and examinations, identified Oromandibular Dystonia.

With my mouth consumed by muscle spasms, I cannot control my tongue movements which makes me unable to keep food in my mouth. Fluids often spill out despite my sincere efforts to keep them in. A few years ago I tried Botulinum injections, but they did not help me. These injections incidentally froze my throat muscles so that I required a feeding tube in my stomach (“PEG”) for a little over four months, unable to eat or drink. Over time, I reached the stage where I am now with facial pain, difficulty speaking, tremors, and the inability to commit to anything because I cannot predict how well I will be able to function. Also, the spasms that are ongoing do not allow for my voice to be consistently available, which makes it difficult to be understood.

A positive attitude is everything. I do enjoy the activities that I can do, and I know when to rest. I was born with an Irish sense of humour, so I am sure to keep that at the ready! If I am in a store or the library and people cannot understand what I am saying, I just point to my face and say “Dystonia” and for those who know of the disease, it does help to explain.

I am blessed with a loving and supportive family, and group of friends who understand my illness and know when “Nana” is not feeling up to par. With prayer, positivity, and knowing what to do and what not to do, I am able to make my life manageable and whole.