Als

[Juanita]

:?: HELLO EVERYONE,
I LOVE THIS SITE & ALL OF THE HELPFUL INFORMATION:-D
MY HUBBY HAS ALS BULBAR & LIMB ONSET HES 48 YEARS OLD NOW & WAS DX. 8-06-03 HES NOW ON A VENT AT HOME, HE CAN'T SPEAK OR MOVE. I READ HIS LIPS, I AM PRETTY MUCH HIS SOLE CAREGIVER I AM 46.
WE HAVE BEEN MARRIED 31 YEARS & HE IS THE LIGHT OF MY LIFE:-D
WE RAN A BUSSINESS TOGETHER FOR 20 YEARS & WORKED TOGETHER SIDE BY SIDE AND "NEVER" SAID A CROSS WORD TO EACHOTHER EVER!
HES BEEN IN THE WORST OF ALS FOR ABOUT 1 YEAR & HALF (VENT & PEG & NO MOVEMENT )
MY PROBLEM IS : HE GETS SO ANGRY AT ME FOR NOTHING.. HES ANGRY EVERYDAY AT ME MOST OF THE DAYS AT LEAST 2 TIMES A DAY.
DOES ALS CAUSE A PERSON TO CHANGE THEIR NORMAL DISPOSITION?
DOES ANYONE HAVE ANY IDEAS ON AN ANTIDEPRESSANT? HE TAKES ATIVAN TO SLEEP & DOESN'T LIKE THE IDEA OF TAKING AN ANTIDEPRESSANT, BUT HE SAYS HE THINKS THE DIESEASE IS MAKING HIM MEAN & AGGITATED..?
DOES IT AFFECT THE WAY A PERSON THINKS?
SORRY ABOUT SO MANY QUESTIONS BUT I DON'T KNOW WHERE TO GO FROM HERE
THANK YOU ALL & WE BELIVE ONE DAY SOON A CURE WILL BE FOUND:-D
JUANITA

 

[Al]

Hi Juanita. I was diagnosed around the same time as your husband and can relate to his frustration. I take Ativan at night and have not needed any other meds yet. I too get snappy occasionally and it is mostly frustration. I don't think the disease changes us or our way of thinking but it sure frustrates the heck out of us when we can no longer do the things that were simple before. Your husband has progressed more than me so he would have more to be frustrated about. I think talking to his Neuro about an antidepressant or at least a boost in the Ativan might help. I only take 2mg at night and some people take that morning and night. Hope this helps. AL.

 

[Marianne]

Stan also has ALS for about 1 year. He has other complications (COPD) as well. This summer the did a trach and he is vented at night. He also takes ativan as needed, temazpam at night to sleep and takes paxil daily for depression. It helps him cope. It does not make him dopey or change his personality. He too gets somewhat short with me because of the frustration. The drugs do not help the frustration, justs helps the depression.

Marianne

 

[Juanita]

Hi

Thank you GranpAl & Marriane,
I really enjoy this site & all of everyones helpful information.
Als is the worst thing I have ever seen...
And theres not much info out there for us.
I wish you both the very best & hope that your progression goes slow or just stops.
My hubby & I use to call them slides, Sometimes we would go for a few months with out any slides..
And sometimes we were like in a rapid slide.
I am here if anyone needs help & hugs,
Juanita

 

[sufernan]

To Juanita

I also really like this site!
My husband did not change, but a devastating disease like this will make you crazy. Daniel was a writer, and it is only after his dead when I read his biography I realize the depth of his suffering. I believe the emotional side is as hard as the physical aspects of the disease. We follow a program designed for people with cancer that was helpful to us.

 

[Juanita]

Hi

Thank you sufernan I will check out the web site,
Juanita