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Daddyrabit

New member
Joined
Oct 6, 2013
Messages
3
Reason
Learn about ALS
Diagnosis
09/2013
Country
US
State
Ga
City
Richmond Hill
After months of tests to determine the cause of extreme fatigue, muscle cramps and other symptoms. It was originally thought that my problems were caused by a small tumor on an adrenal gland. All of that checked out OK. I was sent to a neurologist that specialized in neruo muscular issues. After a physical exam, he told me that he thought I had ALS, and I would get a complete neurological work up to eliminate other possibilities. It is clear that he believes this is ALS.
That sure rocked my world! My thought at the time was just how I was going to tell my wife of 33yrs. That was a week ago, and I still have not had the courage to tell her, other than to say, "they are going to do more tests." My wife and I are very close. She has always refused to talk about the possibility of my death, will not even consider keeping up with our finances it order to be prepared.
I think I can handle this, at least I am not afraid to die, but the path to that point with ALS sure is scary.
My biggest concern is how and when to tell my wife. Should I wait until it progresses and let her have peace as long as I can? I need someone with experience in this to help me decide.
Thanks
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,708
Reason
PALS
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04/2014
Country
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MA
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Boston
I am so very sorry. I hope that something unexpected turns up and the diagnosis turns out to be something else.

In my personal opinion you have to tell her. I understand your desire to protect her but she needs to know and you need her to know. You are partners now and will be partners through your journey. There is grief and adjustment phase that she needs to go through and the sooner she knows the better. There is life after dia gnosis and in order to enjoy it fully you need her to know.
Best wishes
Nikki
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
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PALS
Diagnosis
04/2012
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CA
State
Ontario
City
Ottawa
Sorry for what you're going through. I would urge you tell her. If you need help, bring her along to your next neuro appointment. People who are close, face these things together. Given you've been married for 33 years, you surely know this and you've surely had other bumps on the road.

The path is scary! I'm certain she'd want to help & support you - tell her - so you can navigate the diagnosis process together. (Since we know we're all going to die - seems futile to deny it.)

When are you scheduled for your EMG?
 

veggiepete

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Joined
Jun 6, 2013
Messages
102
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Diagnosis
08/2013
Country
Uk
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East Midlands
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lowestoft
Totally agree with Nicki. my wife(of one year, three days) wouldn't let me go through this alone, and i am grateful for that..I too played things down for a while but can't hide it for long..we are a couple, we'll see it through as a couple
take care
Pete
 

Daddyrabit

New member
Joined
Oct 6, 2013
Messages
3
Reason
Learn about ALS
Diagnosis
09/2013
Country
US
State
Ga
City
Richmond Hill
Waiting now for a call to let me know when to go for tests, EMG, etc.
 

bowser

Distinguished member
Joined
Aug 22, 2013
Messages
144
Diagnosis
03/2011
Country
US
State
Arkansas
City
Cherokee Village
My wife is much closer than anonymous people on an internet site.

Thus, she would have been informed before I told the whole world via the internet.
 

johnnyliverpool1

Distinguished member
Joined
Jul 5, 2011
Messages
473
Country
uk
State
moved back to blighty
City
britain
why tell the missus when your still not diagnosed......keep it to yourself i say ...why burden her until you have too....and it may turn out you aint got it anyway......this thing is rare so theres every chance your in the clear.....johnny
 

Barbie

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Joined
Dec 29, 2007
Messages
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Reason
Lost a loved one
Diagnosis
01/2007
Country
US
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FL
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orlando
my husband hid it (symptoms) from me for a year because he didn't want to burden me before he went to a doctor . I see the point, as it didn't change anything. but you are so close to a yes or no that I think you need to tell her so she can be there for you and so she can start preparing herself. She is a grown woman, not a child. if it turns out you are in the clear, it will open up communication as to the 100% fact of death for everyone and that you can not hide your head in the sand.

usually it is people hiding it from their kids and trying to figure that out. this is a first for me.
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
After searching for months for a reason for my husbands sy mptoms, I finally figured out it was ALS, I talked with a neighbor, and decided not to tell him. That lasted about 2 hours. My words to him were " I think I know what it is wrong, and it's BAD, real BAD." We did this together, and am glad I told him right away. Never regretted it.
 

Atsugi

Legendary member
Forum Supporter
Joined
Jan 11, 2011
Messages
5,199
Reason
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Diagnosis
12/2010
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When the neurologist had a diagnosis, my wife took me in to sit with her as the Dr told her it was ALS.

It was crucially important for me to be there, so I could ask questions and we could hear the diagnosis together.
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
633
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
been married 57 years, my wife attended every pre ALS exam, was with me when they said sorry you have ALS, goes to multi discipline clinic with me. sharing the burden helps. in the long run it is harder on the caregiver so treat her with respect and show your love
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
57 years! Congratulations. Wow! That is so beautiful - as is your post.

I also believe it's harder on the CALS who do all of the heavy lifting.


( my parents recently celebrated 71 years)
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,497
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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AU
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lala land
Hi and welcome,
it's such a personal decision, but whilst you may feel you are giving her some more time in peace, maybe she is noticing a lot of things and worrying quietly to herself too.

Facing it together may be easier on you both, but none of this is easy!

so sorry you are facing this
 

bowser

Distinguished member
Joined
Aug 22, 2013
Messages
144
Diagnosis
03/2011
Country
US
State
Arkansas
City
Cherokee Village
After months of tests to determine the cause of extreme fatigue, muscle cramps and other symptoms. It was originally thought that my problems were caused by a small tumor on an adrenal gland. All of that checked out OK. I was sent to a neurologist that specialized in neruo muscular issues. After a physical exam, he told me that he thought I had ALS, and I would get a complete neurological work up to eliminate other possibilities. It is clear that he believes this is ALS.
That sure rocked my world! My thought at the time was just how I was going to tell my wife of 33yrs. That was a week ago, and I still have not had the courage to tell her, other than to say, "they are going to do more tests." My wife and I are very close. She has always refused to talk about the possibility of my death, will not even consider keeping up with our finances it order to be prepared.
I think I can handle this, at least I am not afraid to die, but the path to that point with ALS sure is scary.
My biggest concern is how and when to tell my wife. Should I wait until it progresses and let her have peace as long as I can? I need someone with experience in this to help me decide.
Thanks



It would be a shame if your wife found out by a friend saying........" my brother's sister -in-law happened to be reading an internet site last night and there was a guy posting on it from Richmond Hill Georgia. You sure that isn't your husband " ?
 

Daddyrabit

New member
Joined
Oct 6, 2013
Messages
3
Reason
Learn about ALS
Diagnosis
09/2013
Country
US
State
Ga
City
Richmond Hill
Thanks everyone for your input. I told her last night, but I didn't go into a lot of the details of what may happen over time. Want to give her a chance to get her brain wrapped around it. Of course we are in this together. If I do have ALS then she has it as well. Glad that that part is over. It is one of the hardest things I have ever done.
Thanks to all
 
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