- Sep 7, 2013
My husband was diagnosed with primary progressive aphasia on 6/28 after I began noticing first a change in the tone of his voice and the slurred speech and it seemed difficulty finding the words. We saw a local neurologist and received this diagnosis then to UPMC Pittsburgh where he was diagnosed with Frontotemporal dementia and possible ALS. Began immediate speech therapy, having trouble swallowing pills and liquids and speech almost gone, can understand a few words. Having some jumping muscles and now says his lungs don't fill up completely when he breathes and his heart races. Lung capacity after PFT's 50%. UPMC now diagnosing bulbar onset ALS with all of the symptoms. We are overwhelmed, sad Rob also has Pseudobulbar effect with extreme crying and laughing episodes. Some sites say exercise some say no. I am becoming confused as to the right things to do for him. He had a bad reaction to Celexa and was put on Rilutek which we will pick up today. I started him on Vitamin E and COQ10 as well as Coconut Oil which seems to have helped the muscle twitching. Our faith is strong, please advise, Rob is 54 years old, we are devastated. So much happening sold our house to get a one story house and will be moving. Trying to take things a day at a time. Advise and prayers for this loving kind, soft spirited man.