Jun 15, 2017 Latest post:
Aug 21, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. 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.i WHAT INTERVENTIONS HAVE I DONE? I started on RILUZOLE right away. It i s currently the only medication approved for ALS I stopped it this past October due to fatigue. A while later, when my saliva continued to increase, I started using Atropine oral spray. One thing this disease has done to me is cause me to cry really easily. It is appropriate, but exagerated. The tears roll, I can't breathe or see to use my pad, etc. You get the picture. SOOOO...... I decided to try NUEDEXTA. In studies it showed to help other symptoms like swallowing, handling secretions, and so on. Even with insurance it was$460. My edema in my legs increased and my coughing did too. No improvement in anything. Bye Bye Nuedexta...... There is a study at Duke University using LUNASIN. Its use has shown documented reversal of symptoms in some ALS patients. I decided to follow the protocol, and have since January. Sadly I have continued to weaken. :( I am inelgible for most research because of my Auto immune disease, DERMATOMYOSITIS.
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~!
HOPE? A new drug, EDARAVONE, will be available in August. I don't know if I am a candidate, but I can hope. I know Miracles still happen!!!