Terri Brown | CaringBridge

Terri Brown

First post: 6/15/2017 Latest post: 6/21/2017
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My current story began at our family Thanksgiving in 2013. Most of you know that I don't really drink.  My brother asked me if I had been drinking because I was "slurring my words".  Fat chance!! This continued to happen more often and my voice took on a hoarseness.  By May of 2014 I had been to an ENT, who saw nothing wrong.  In July I visited my Rheumatologist. I see him for an auto immune disease called DERMATOMYOSITIS. He looked at me gravely and said he would like for me to see a Neurologist at IU that specialized in ALS. I was blown away to say the least. On September 26, 2014, after many tests and 3 visits to Indy, I was given the diagnosis of ALS. My slurred speech and hoarse voice were getting worse. In October I went to my first ALS clinic in Indy. Only my voice, swallowing  and some muscles in my oral area were affected at that time.  Oh, and my breathing when was lying down was already showing effects.  Bipap started at night.
By February I spoke less clearly and decided to take a Leave Of Absence from work. By the end of July I was no longer employed and considered disabled.  
I go every three months to the multidisciplinary ALS clinic at IU Med Neuroscience Center.  I see a Neurologist, Physiatrist(physical medicine specialist), OT, PT, Orthotist,  Mobility specialist, Dietician, Speech Pathologist, Respiratory Therapist, ALS Social Worker, Chaplain, and a variety of interns, residents, and students at each 4 hour clinic.
My breathing decreases a little each time I go.
I no longer am able to speak so I use IPAD, tablets, sign language, charades, grunts, moans,and even the written word. Imagine that! My handwriting was bad enough but now really suffering.
Early in 2016 I began to have some balance issues and more trouble swallowing.
March 2016 I had a Gastrostomy tube put in for feedings.
August 2016 I took a bad fall and ended up with a concussion. That was the end of my independent ambulation. A walker was now my constant companion.
We sold our home in Illinois and moved next to Devin and family on October 28, 2016. 
Serious foot drop soon ended my driving days.
We had so much help from so many people over the moving and packing days that I can't begin to name them all.  
I have to give extra thanks to my special friends Jan, Mary, Margaret, and sister Jane for all the time they have spent with me. 
Thom, Devin, Cara, Trillium, Shawnee, and Renee have been at my beck and call. I am blessed~!

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