Hi, this forum is not as active as it used to be. Are you on Facebook? We have a real good caregivers group that is a private closed group. Click on my name and write on my page if you are interested in joining. I am not on here much, but will check in to see if you responded. If you are dealing with FTD too, you need a good support group. HUGS. Lori
I'm very sorry about your husband. My mom was diagnosed with bulbar onset als by Dr. Lacomis at UPMC in 12/2012. She is 86 years old. I cannot advise you as to the FTD or extreme emotional liability, as my mom does not experience either of those, but I can tell you that getting a peg (feeding tube) has been a very positive experience for us. She cannot speak or swallow, so all of her meds and nutrition go thru the tube. She is still able to eat pureed foods and ice cream, but if it is a really bad swallowing day she doesn't have to take anything by mouth. I'm glad you found this forum, I have learned a lot from these caring individuals. Don't be afraid to ask us anything.
Take care, Trina
Please any insite, why such a rapid progression? We are so afraid although our faith is strong, we have sold a house and will be moving to a smaller one story house in a few weeks. Please advise if anyone has had a similar experience, what to expect and any advise to help me give the best loving care that I can. God Bless each and every one of you for your help and what you are going through or have went through with a loved one. I know that God is in control.
My husband began this journey with monotone voice when we prayed, then slurred speech then difficulty speaking and on 6/28/13 he was diagnosed with primary progressive aphasia by a neurologist in our are of PA, we then went to a neurologist at UPMC Pittsburgh Medical Center, where we were told that he had fronto-temporal dementia and possibly ALS. Rob rapidly began to lose his ability to speak and and was having difficulty swallowing, videofleuroscopy showed the pills were hanging and a delay going down. We had immediately started speech therapy and taking pills in applesauce. Two days after the Pittsburgh appointment Rob began to experience muscle spasms and a continued rapid decline where speech is very difficut to understand, periods of extreme crying and over the top laughing, he also feels as though he cannot fill his lungs up with air and pulmonologist said his vital lung capacity is 50%