anna75458
New member
- Joined
- Sep 20, 2012
- Messages
- 3
- Reason
- Loved one DX
- Country
- US
- State
- ca
- City
- sac
Hello all. My father was recently diagnosed with ALS a few weeks ago. Before that, he's had 2 strokes in the past 1.5 years. It seems like things have gotten worse over time. I used to hope that he would recover from the strokes but now, of course, I am trying to accept that he is going to die in a few years or months.
I live across the country so it's hard to visit, but I'm going to see him next month. I talk to him on the phone, which is difficult sometimes, but we can still communicate. Apparently he has trouble feeding himself, moving his limbs(he's "paralyzed" a relative said) and cannot type well. When I try to talk to his nurse, she tells me he is doing well. I want more details than that but it's kind of like pulling teeth.
Do ALS patients all have a prognosis or is it sometimes unknown? His nurse says that he's fine and doesn't give me a time frame. I think he's living in some kind of home.
Also, I wanted to know if there are any activities we can do together. Can I take him to the zoo or aquarium? Is it a simple matter of taking him around in a wheelchair or is this idea a lot more complicated than that? Should I bring his nurse too? He's in Atlanta if that sparks any ideas. I'd love to be able to do something fun with him because talking is so hard. I'm only going for 3 days. I wanted to go for more, maybe 5, but I'm afraid about losing work(they don't pay for a vacation), time at school and time away from my family.
It's hard to have my father go right now. At work, my customers will mention their parents(and the customers are 40-50 yrs old), and I ask myself mentally "Why do they get to keep theirs all this time?" I get really sad about it. My mother passed when I was young, so after my father goes, I won't have any extended family. I'm in my mid-20's, which isn't young, but young to lose a parent I think.
Anyway, sorry for that. Is there anything I should be doing for him? Bring him a gift? I think I'll do that. Any advice is appreciated, since I'm not familiar with ALS patients.
I live across the country so it's hard to visit, but I'm going to see him next month. I talk to him on the phone, which is difficult sometimes, but we can still communicate. Apparently he has trouble feeding himself, moving his limbs(he's "paralyzed" a relative said) and cannot type well. When I try to talk to his nurse, she tells me he is doing well. I want more details than that but it's kind of like pulling teeth.
Do ALS patients all have a prognosis or is it sometimes unknown? His nurse says that he's fine and doesn't give me a time frame. I think he's living in some kind of home.
Also, I wanted to know if there are any activities we can do together. Can I take him to the zoo or aquarium? Is it a simple matter of taking him around in a wheelchair or is this idea a lot more complicated than that? Should I bring his nurse too? He's in Atlanta if that sparks any ideas. I'd love to be able to do something fun with him because talking is so hard. I'm only going for 3 days. I wanted to go for more, maybe 5, but I'm afraid about losing work(they don't pay for a vacation), time at school and time away from my family.
It's hard to have my father go right now. At work, my customers will mention their parents(and the customers are 40-50 yrs old), and I ask myself mentally "Why do they get to keep theirs all this time?" I get really sad about it. My mother passed when I was young, so after my father goes, I won't have any extended family. I'm in my mid-20's, which isn't young, but young to lose a parent I think.
Anyway, sorry for that. Is there anything I should be doing for him? Bring him a gift? I think I'll do that. Any advice is appreciated, since I'm not familiar with ALS patients.