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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.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
Messages
660
Diagnosis
10/2007
Country
US
State
New York
City
Richmondville
complicated

Hi Bill,
I will jump in here, as I am up early and lonely myself. My husband Rick has ALS.. diagnosed exactly one year ago. He has many different symptoms, among which, I would have to admit are mental. He has slow progressive ALS so far, so he is still functioning where most people who observe him, don't know there is anything wrong with him. He is 60.
His mental state is that he cannot remember things or retain the things he experiences. Like, he can watch I Love Lucy on tv., which he never watched before in his life, and just enjoy the laughter so much..... and see the same one three days later and not remember it. Or he doesn't remember talking about something we covered yesterday. Or he doesn't remember where he put something. But not recognizing who we are, or wanting to go home when he is already home, is so different.
It sounds like to me, that your wife isn't getting enough oxygen to her brain for one reason or another. Could be an obstruction, like a tumor, or just the need for oxygen admininstered through her nose etc. You are dealing with much more than just ALS, I believe.
I hope you are having routine checkups done for her at her doctor's to see if there can be some kind of improvements made in her condition. You certainly have your hands full, and my heart goes out to you for all you are handling. M
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
Good morning to both of you. There will lots of pepole here to talk to and if your questions can be answered they will. It is a very hard road to follow caring for a loved one wish you both lots of strengh.
Sorry I can't answer about the mental awareness my husband was the opposite of what you are describing about your wife.

Cheryl
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Bill- sorry to hear about your Dad. I am glad you decided to join us, though. Folks around here are very caring and quite knowledgeable. Some PALS (People living with ALS) get a form of dementia also, as if ALS was not bad enough! I am not sure if your Dad's symptoms fit FTD, but if you do a search from the tab at the top of this screen you'll see some posts from others who have been down that road.

Regards, Cindy
 

cariad

Member
Joined
May 23, 2008
Messages
10
Reason
CALS
Diagnosis
05/2008
Country
uk
State
wales
City
swansea
Hi Bill,
my mam is 65 yrs and has ALS/FTD. Your wife's symptoms could well indicate cognitive changes. Ask the neuro to check for FTD. Confusion, emotional outbursts and memory lapses (rather than amnesia) are classic signs of FTD. You have got a lot on your plate caring for both your wife and son...........remember to look after yourself too
warm regards, Berni
 
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