new to forum=after a year

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New member
Joined
Jul 12, 2008
Messages
1
Reason
CALS
Diagnosis
01/2008
Country
US
State
pa
I've been reading posts for the past hour and can't believe I've waited this long to write something. My husband was diagnosed a year ago. He has weakness in his legs and arm twitches. Other than our parents and us, he refuses to let anyone else know. His story is that he hurt his hip and the doctor hasn't been able to get it back to normal. His disease-his choice. I spend alot of time crying and researching-wanting to try everything under the sun. We have to children who don't know the truth either. How in the world do you get to the point where you stop crying? He handles this fine. I just don't get it?
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
sdix ... I'm so sorry about your husband's diagnosed. It sounds to me like he is in real denial. I was too at first ... I accepted that I had something called "ALS" but I was determined that it was not going to get any worse or change my life. I've finally reached the point where I know "this is not going to go away." This must be horrible for you to have to live with, knowing the truth yet having to pretend everything's OK.

It sounds like he has slow progression, which is good. You two may have many, many years together. It will be MUCH EASIER on you when he faces reality and you can work together to help slow progression and take the steps to keep him strong as long as possible.

I think caregivers suffer as much ... or much more ... than PALS. You won't be able to change his mind; it will be up to his neuro to convince him to do the things he needs to do. So take good care of yourself. He will come to his senses eventually.

Welcome to the forum. I'm sorry you have to be here.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
sdix,

Sorry to hear about your husband. How old are your children? He won't be able to keep things hidden forever. I hope you will be able to find some comfort in reading other's posts about how they deal with the disease. You are not alone.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
I'm going to try and explain why I think your husband has this mindset. I believe he wants to keep knowledge of the disease to as few as possible because he may feel it is not necessary, at this point, to involve children and friends. Why raise the alarm at his stage when things are still going relatively good. He undoubtedly knows the course of the disease and may feel, at this point, he is doing well enough to hide it. Obviously, there will come a time when he will no longer be able to continue to put the blame on just a "bad hip".

What he may not be considering is the positive way that his kids and others may react by wanting to spend more time with him, making more memories and helping you help him.

But, as he states, it is his choice, however he chooses to rationalize.

I wish you the best!

Zaphoon
 
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