Zenvia

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patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,171
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
Hi folks

i am going on zenvia on monday

i was wondering how many of you are on it and how do you feel on it

thanks pat
 
I wish my husband could still take Zenvia! Since he completed the trial , his saliva has increased tremendously and EL has been a lot worse!

I say thumbs up for this treatment! He had no side effects that we know of. Also, he seemed to be in such good spirits.
 
Same here - good results with no side effects. My lability was a big problem at home, at work, and in public causing much misunderstanding and embarassment. Everybody who knows me could see the improvement with Zenvia.

CJ - Sorry to hear you guys couldn't find a way for your husband to continue with this drug. How frustrating!

I swear my kids would panhandle if they had to so they could keep me on Zenvia. They were great about understanding what was happening, knowing that I couldn't control it and that the behavior wasn't "me". But it was becoming ridiculous to the point of eye rolling. I'd routinely break down weeping in restaurants when dinner conversation turned to a topic even the slightest bit emotionally arousing. There was a commercial for the ASPCA showing abused and neglected pets that would set me off on lengthy sob sessions. You'd see kids frantically diving for the remote to switch channels before I lost it. They were constantly on guard trying to shield me from anything that might trigger an episode. We're all glad to be done with that.
 
Liz, that is so great that you can be on Zenvia. I asked my Dad's neurologist about Zenvia and she says it is not available here in Canada. I know my Dad would love to keep his emotional lability in check. Before he got ALS I had seen my Dad cry 3 times in his whole life for very significant reasons. Now if I tell him I love him he breaks down. It's sad because I want to tell him nice things but I don't want to make him cry so I just tell him he is very handsome and that always makes him smile. :)

Thank goodness he finally agreed to take anti-depressants. It took me 7 months to convince him!
 
Thelma -

That is so sweet how you handle your dad's emotional lability. I'll bet he appreciates that more than he'll ever be able to show.
 
Thanks Liz. I hope so. My Dad is a good guy and I really admire him.
 
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