hello, husband with ALS

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snowbirdqv

New member
Joined
Dec 20, 2007
Messages
3
Reason
CALS
Diagnosis
04/2005
Country
CA
State
Manitoba
City
Treherne
venting

As a caregiver, I can also remember being the recipient of anger and frustration. There is no question that it is hard to take, and sometimes I had to leave the room, go for a walk, or even leave the hospital. However, I did know what was causing it and I always came back smiling and cheerful. It was tough, many times. Through the whole process, I believe that it drew our family closer together. We had problems later with some family anger issues, but that is all part of the grieving process. We are fine now.
 

Elaine Ramos

New member
Joined
Feb 22, 2008
Messages
6
Reason
CALS
Diagnosis
03/2006
Country
US
State
New Mexico
City
Albuquerque
Hi Judy,
I just read your message. My husband gets Botox type shots from his ALS clinic doctor for saliva. He takes Lorazepam drops for the choking sensation when the throat muscles cramp up. Is he using a Vpap machine while he is at home? This helps with breathing and not invasive. My husband also has a suction machine that clears out his throat so he can breathe better. He really should not smoke because his respiratory system will eventually fail due to the ALS and he doesn't want to help that along with smoking. I also am afraid that he will stop breathing too, but in my case we just get him his Lorazepam drops immediately when he feels like he can't breathe. We once went to the ER, but they only gave him Lorazepam there too so now we know how to handle his bouts of throat cramps. They can also have anxiety attacks coupled with this, so it is important to have all the right meds on hand. Let me know how you are doing.

Elaine
 

MRS.HOUSE

Member
Joined
Aug 9, 2010
Messages
17
Reason
Loved one DX
Country
CA
State
Manitoba
City
Winnipeg
Hi,
I'm new as well. If you want to talk I'd love to talk to you as well.
God bless
 

John1

Very helpful member
Joined
Feb 25, 2006
Messages
1,028
Diagnosis
10/2000
Country
CA
State
NL
City
Newfoundland
Hi Mrs. House,

The post you are replying to is over 3 years old. The woman who posted has not visited the forum since April 2007. BTW, welcome to the forum.
 

kfrancis

New member
Joined
Aug 10, 2010
Messages
7
Reason
Loved one DX
Country
US
State
Wa
City
Lynnwood
Hello,
I know what you are going through we went through same thing mis-diagnosed also and then we later went back because his muscle twitches were worse the neurologist sent us to a bigger clinic an ALS clinic there we met our new Dr. and he is an amazing Dr. but we were also 100% sure it was ALS. I have had a really hard time with this, we just had a baby almost 2 years ago before we knew he was sick and now we were given 1 to 2 years for him, this is the wrost thing ever and I can say that I am so upset about it and would love to chat with other people going through this it is really really hard. Thanks for your post.
 
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