llacort
Member
- Joined
- Aug 16, 2010
- Messages
- 14
- Reason
- CALS
- Diagnosis
- 07/2010
- Country
- US
- State
- NY
- City
- Merrick
Hi All,
My husband was diagnosed with ALS Atypical July 9, 2010. This after a year of seeing specialist after specialist. His ALS specialist ordered a neuropsych. We had that done and the doctor suggested I join a caregiver's support group asap. I haven't been able to find one specifically for ALS caregivers in my area which is Long Island New York. The doctor's words were "you are 70% sane now, but if you don't join a group asap, you will be 70% insane". They are saying he seems more likely to have Multiple System Atrophy which is pretty much the same thing as ALS with other symptoms. My husband had been having outbursts, he was upted his depression medication and I'm afraid to say it, but it seems to be working. I have so many mixed feelings. When I'm at work I think I will be more patient when I go home, but just the opposite happens. As soon as I walk in, he seems to have chores for me to do. Maybe not chores but it seems like I'm constantly going. I'm feeling low because we loved vacations that involved walking not resting and I keep going to the library and on line to find the right vacation. Fact is that when I actually see him, I say I'm in la la land. We don't even manage rides because he's exhausted after a shower. Even if he takes one the night before, it just doesn't happen. The heat this summer certainly doesn't help. I know some say a cruise is the right vacation, but we never were into that. I know you will say forget the past and move on but he is not agreeable to this. Some say rent a house on the beach and relax, but I CAN'T relax. I don't know how. I always have to be on the move. I'm just feeling down about our life in general. There is nothing to look forward to. I know from what I read on some sites that do what you can NOW, but he doesn't want to and it's kind of delicate to say now or maybe it will be never. Anyhow, I'm rambling and am looking for a wife who is in the same place as I am. I know I need to connect with others. Thanks for reading my self-pity.
My husband was diagnosed with ALS Atypical July 9, 2010. This after a year of seeing specialist after specialist. His ALS specialist ordered a neuropsych. We had that done and the doctor suggested I join a caregiver's support group asap. I haven't been able to find one specifically for ALS caregivers in my area which is Long Island New York. The doctor's words were "you are 70% sane now, but if you don't join a group asap, you will be 70% insane". They are saying he seems more likely to have Multiple System Atrophy which is pretty much the same thing as ALS with other symptoms. My husband had been having outbursts, he was upted his depression medication and I'm afraid to say it, but it seems to be working. I have so many mixed feelings. When I'm at work I think I will be more patient when I go home, but just the opposite happens. As soon as I walk in, he seems to have chores for me to do. Maybe not chores but it seems like I'm constantly going. I'm feeling low because we loved vacations that involved walking not resting and I keep going to the library and on line to find the right vacation. Fact is that when I actually see him, I say I'm in la la land. We don't even manage rides because he's exhausted after a shower. Even if he takes one the night before, it just doesn't happen. The heat this summer certainly doesn't help. I know some say a cruise is the right vacation, but we never were into that. I know you will say forget the past and move on but he is not agreeable to this. Some say rent a house on the beach and relax, but I CAN'T relax. I don't know how. I always have to be on the move. I'm just feeling down about our life in general. There is nothing to look forward to. I know from what I read on some sites that do what you can NOW, but he doesn't want to and it's kind of delicate to say now or maybe it will be never. Anyhow, I'm rambling and am looking for a wife who is in the same place as I am. I know I need to connect with others. Thanks for reading my self-pity.