- Sep 7, 2013
My wonderful, kind and gentle spirited husband began having some difficulty with his voice, tone became quiet and soft when we were praying together, he said it was allergies, later he told me he didn't know what it was and didn't want to scare me as my first husband died 10 years ago and we have only been married for 4 years. Then I noticed the next week he was slurring his speech and finally I said Rob you are having trouble what going on? He then related that he was having trouble talking. We went to a neurologist the next day and he was diagnosed with Primary Progressive Aphasia and then Frontotemporal dementia in Pittsburgh with possible ALS. This all began in June and has progressed to the point where he can harldy speak at all, is taking pills with applesauce as they do not go down easily and at times choking on liquids. Rob told me he was having this sensation that his lungs do not fill up with air so to the pulmonologist where he says capacity is at 50% but ABG's show no Co2 retention. Jumping muscles in different areas of his body however main area seems to be speech and swallowing. Rob also has PBA with periods of crying and laughing that are over the top. He knows and realized everything happening to him and actually it seems as though something new happens each day, he can't smile, tongue goes to the roof of his mouth when he sneezes, trouble blowing his nose. I am here for him, blessed that God put us together and need advise as to what to watch for and how to make sure that I am doing all that I can for him. He was put on Rilutek and I have put him on Vitamin E, CoQ10 and coconut oil orally as well as rubbing it on his muscles daily, which after a week seems to have stopped some of the muscle jerking which was very bothersome to him. Our faith is strong, our love is strong, our heart are breaking but we Trust in God and know that He is with us. Rob goes to speech therapy and had videofleuroscopy is it normal for this to progress so quickly? I read different things different places.