Bill3519
New member
- Joined
- Oct 2, 2008
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 04/2007
- Country
- US
- State
- Georgia
- City
- Lawrenceville
Hi, I just found this site tonight, and it seems to be exactly what I have been looking for.
I have been having a real hard time trying to get some answers about what to expect, and I know every situation is going to be different, but hopefully someone can help based on their experience. My wife, who is 54 yrs. old, was diagnosed with ALS in April 2007. She had started having trouble with weakness in her right arm around Thanksgiving 2006, and after numerous trips to other specialists, finally went to the neurologist in 2007. She had already been on disability since 2001 when she suffered permanent nerve damage during a routine hysterectomy.She had been getting weaker and weaker and having more difficulty with breathing and about a month ago had to be hospitalized with pneumonia. At that time, I was told that she was so bad off that she would never leave the hospital. After 8 days in ICU, she had a small rebound of strength and they let her come home for her final days. Before going in the hospital, she was extremely mentally alert. Since coming home she has been very confused and disoriented. She knows who I am most of the time ( we have been married for 28 yrs.), she almost always recognizes our 2 children, but almost anyone else, she has a hard time remembering who they are. She constantly wants to go home even though I reassure her that we are at home. A lot of the time she may ramble on about something that makes no sense. There will be times of crying followed by screams of " Help Me". She also is in need of constant attention, she will yell for me if I step into another room and I am out of sight. I have been told that the confusion should be a phase, but don't really know. It is emotional for me, but I am very concerned about our 26 year old son, who is a quadriplegic, with Cerebal Palsy, and living at home. He is very emotional himself and when his mother gets really worked up, he just wants to be back in his room by himself. The doctor is goint to try some new meds to try and help calm her down, but due to the nerve damage 7 years ago, she has been on a very strong regimine of meds and a lot of them are no longer affective. Basically, I was just wondering if anyone else had experienced any of these issues. Originally I had read that mental alertness should not be affected, but recently I read that the experts were changing their opinion on that.
Thanks in advance for any help with this. Also sorry if I rambled on, just don't have anyone to talk to about all of this and it gets pretty lonely.
I have been having a real hard time trying to get some answers about what to expect, and I know every situation is going to be different, but hopefully someone can help based on their experience. My wife, who is 54 yrs. old, was diagnosed with ALS in April 2007. She had started having trouble with weakness in her right arm around Thanksgiving 2006, and after numerous trips to other specialists, finally went to the neurologist in 2007. She had already been on disability since 2001 when she suffered permanent nerve damage during a routine hysterectomy.She had been getting weaker and weaker and having more difficulty with breathing and about a month ago had to be hospitalized with pneumonia. At that time, I was told that she was so bad off that she would never leave the hospital. After 8 days in ICU, she had a small rebound of strength and they let her come home for her final days. Before going in the hospital, she was extremely mentally alert. Since coming home she has been very confused and disoriented. She knows who I am most of the time ( we have been married for 28 yrs.), she almost always recognizes our 2 children, but almost anyone else, she has a hard time remembering who they are. She constantly wants to go home even though I reassure her that we are at home. A lot of the time she may ramble on about something that makes no sense. There will be times of crying followed by screams of " Help Me". She also is in need of constant attention, she will yell for me if I step into another room and I am out of sight. I have been told that the confusion should be a phase, but don't really know. It is emotional for me, but I am very concerned about our 26 year old son, who is a quadriplegic, with Cerebal Palsy, and living at home. He is very emotional himself and when his mother gets really worked up, he just wants to be back in his room by himself. The doctor is goint to try some new meds to try and help calm her down, but due to the nerve damage 7 years ago, she has been on a very strong regimine of meds and a lot of them are no longer affective. Basically, I was just wondering if anyone else had experienced any of these issues. Originally I had read that mental alertness should not be affected, but recently I read that the experts were changing their opinion on that.
Thanks in advance for any help with this. Also sorry if I rambled on, just don't have anyone to talk to about all of this and it gets pretty lonely.