thelma313
Senior member
- Joined
- Aug 25, 2008
- Messages
- 892
- Country
- CA
- State
- Quebec
- City
- Montreal
My sweet dad was diagnosed with Bulbar onset ALS 6 months ago and his disease has progressed considerably. He can barely speak at all now and walks with a cane and wears an ankle brace for his drop foot.
I am visiting my parents in Florida where they spend the winter away from the Canadian cold and snow. They drove here and now I am worried about my dad being able to drive back. It's a 25-hour drive that my parents space out over 3 days. Also he does not have a BiPap yet and doesn't sleep well. He coughs a lot and I chalked it up to ALS until I read a post by Al on this forum where he says he needed a round of antibiotics for his cough. My mom and I made an appointment with his doctor here and it turns out he did need antibiotics for a sinus infection. Thank God for this forum! I get so much useful information here and am really grateful to all of you.
The most heart breaking aspect of my dad's condition is his emotional lability. He refuses to take any medication for it and he cries A LOT. The other day we were walking to the car and he fell. It was incredibly scary. He scraped his head on a bush and it was bleeding. He stayed on the ground and cried and cried for at least 15 minutes. It literally broke my heart but I had antibiotic wipes in my purse and tended to his scraped head and knees. He is the bravest man I know and he got up and insisted we continue our way to the car because he wanted so much to take the family out for brunch. A few days later we were eating dinner and he choked so badly he couldn't breathe. I had to give him the Heimlich manouever. I had never had to do that before. I think I saw it done on TV but it totally worked. However, my dad was terribly upset. He didn't finish his dinner. He just sat in his chair for the rest of the night looking very depressed. The next day he was okay again and had on his brave face. It's up and down and I try to cherish the days he is feeling okay. Some days he is totally listless and sad and other days he is chipper and funny. Is it like this for everyone? I am really hoping he plateaus for a while.
I am visiting my parents in Florida where they spend the winter away from the Canadian cold and snow. They drove here and now I am worried about my dad being able to drive back. It's a 25-hour drive that my parents space out over 3 days. Also he does not have a BiPap yet and doesn't sleep well. He coughs a lot and I chalked it up to ALS until I read a post by Al on this forum where he says he needed a round of antibiotics for his cough. My mom and I made an appointment with his doctor here and it turns out he did need antibiotics for a sinus infection. Thank God for this forum! I get so much useful information here and am really grateful to all of you.
The most heart breaking aspect of my dad's condition is his emotional lability. He refuses to take any medication for it and he cries A LOT. The other day we were walking to the car and he fell. It was incredibly scary. He scraped his head on a bush and it was bleeding. He stayed on the ground and cried and cried for at least 15 minutes. It literally broke my heart but I had antibiotic wipes in my purse and tended to his scraped head and knees. He is the bravest man I know and he got up and insisted we continue our way to the car because he wanted so much to take the family out for brunch. A few days later we were eating dinner and he choked so badly he couldn't breathe. I had to give him the Heimlich manouever. I had never had to do that before. I think I saw it done on TV but it totally worked. However, my dad was terribly upset. He didn't finish his dinner. He just sat in his chair for the rest of the night looking very depressed. The next day he was okay again and had on his brave face. It's up and down and I try to cherish the days he is feeling okay. Some days he is totally listless and sad and other days he is chipper and funny. Is it like this for everyone? I am really hoping he plateaus for a while.