- May 13, 2017
- South Carolina
Hello, I'm TerriK, Wife and Caregiver of my Husband diagnosed with Bulbar onset ALS one year ago. He started with syrupy speech in November 2015 and muscle atrophy in his upper body. After numerous tests, MRI's, Blood work, Doppler.........Visits to Neurologists, ENT's, GP.......etc.....we were scheduled for an EMG/NCS when he suffered an Abdominal Aorta Aneurysm. He spent a month in the Hospital. 2 weeks after he came home he had his EMG/NCS and was diagnosed with Bulbar Onset ALS May 2016, nasty beast. He is now on a NIV. I wanted to say hello to others caring for their husband. Has anyone else experienced a lack of knowledge with Pulmonologists concerning PFT's with Bulbar? We find his Total Lung Capacity is affected more so than his FVC, in fact, we've both noticed a small improvement with his FVC since he's been on a NIV. Just wanted to hear other opinions of those in the trenches with this nasty beast! He has no voice, we had no time for a voice bank, it all happened so quick. Oh, how I miss his voice! He has a PEG, can't swallow, tongue has atrophied so much he can't touch his teeth with it anymore. Horrible secretions, can't seem to find a balance. Upper body muscle gone, relentless constipation issues................I'm sure you've all heard it! I found an article that gave me some comfort yesterday, wanted to share and get some feedback.......Hello and Love to all the other CALS!