I hope I don't hurt anyone's feelings...I am grateful that many of you are coping and getting around. This forum has lots of great ideas and information but...
I have not found one person anywhere that is going through what I am. My husband diagnosed only in July '05 with ALS, bulbar symptoms and frontal lobe dementia. The doctors say this is not rare but it sure seems to be. Out of all the many people I have talked with and sit hear and read about not anyone has these problems from the get go...What does this all mean for my husband? Am I missing something?
I have wonderful family and friends but nobody knows really what I am going through...it is lonely not being able to have normal conversations with my husband. He is not able to help with any decisions. His right side is almost completely paralyzed. It is moving rapidly to his left side, it is at his elbow now. Eating is tiresom, gets choked even on soft foods. He is having another barium swallow done next week to see if he needs the tube or not. He is wasting away in front of our eyes... I try to stay strong for my kids but it is hard to do at times.
You see my husband was the best thing to ever happen to me and now I have lost him not physically but mentally and I don't know what to do. Just keep loving him...
Sorry for being long winded but I am grateful for the opportunity...
still praying for a cure,
Jbird
I have not found one person anywhere that is going through what I am. My husband diagnosed only in July '05 with ALS, bulbar symptoms and frontal lobe dementia. The doctors say this is not rare but it sure seems to be. Out of all the many people I have talked with and sit hear and read about not anyone has these problems from the get go...What does this all mean for my husband? Am I missing something?
I have wonderful family and friends but nobody knows really what I am going through...it is lonely not being able to have normal conversations with my husband. He is not able to help with any decisions. His right side is almost completely paralyzed. It is moving rapidly to his left side, it is at his elbow now. Eating is tiresom, gets choked even on soft foods. He is having another barium swallow done next week to see if he needs the tube or not. He is wasting away in front of our eyes... I try to stay strong for my kids but it is hard to do at times.
You see my husband was the best thing to ever happen to me and now I have lost him not physically but mentally and I don't know what to do. Just keep loving him...
Sorry for being long winded but I am grateful for the opportunity...
still praying for a cure,
Jbird