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smokey

New member
Joined
Oct 30, 2007
Messages
4
Reason
CALS
Country
au
State
buckland
City
buckland
Hi my husband is waiting to be tested for MND. This has been really hard as he has had symptoms for nearly a year and not told me. he finally told me he had an appointment with a neurologist and was not having an affair. he had been so distant and pushed me away wouldnt tell me what was wrong until finally I asked him if he wanted me to leave thats when he told me. He still wont tell me the date of his test says he wants to deal with it first then will tell me when he is ready.This is so hard as I want to be there for him.He keeps saying even if the test is positive doesnt mean he has it. He symptoms have got worse. What started as just cramp in his calves have now gone to twitching in thighs , back and arms. He has some weakness in his grip but that comes and goes. He has lost 12kg over the year, but also not exercising as has a broken pelvis at the moment from Mountaining biking he is very active so quite depressed about everything.
What can I do to help him and get him to open up I am scared he will try to handle it himself. He said he didnt want to tell me as he doesnt want me to worry. We have been together for 20yrs he is only 43.I feel guilty when I get angry with him for being a pain knowing what he is going through. I told him no matter what we will deal with it together.That we just have to take one day at a time.He seems to be happier with people that dont know thats hard to take but I understand why. What can I do ?

Have no new new. Did ask again when appointmnet is. I know it is sometime this month. I hate this waiting so I cant imagine what it is like for him.
 

brooksea

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

Maybe you should tell him what you just told us
I hate this waiting so I cant imagine what it is like for him.

if you haven't already. Maybe he would realize you two are "one" after 23 years and you ache in your soul for him...
 

smokey

New member
Joined
Oct 30, 2007
Messages
4
Reason
CALS
Country
au
State
buckland
City
buckland
I have told him all this but his answer is always " I will deal with it first, then will let you know" he say he has to sort things out in his own mind before letting anyone else deal with it. It just seems to me that there is this gap forming between us and I am not sure how to close it. All I can do at the monent is wait and be there and just hope he turns to me when he needs me and not try to do things himself.
 

brooksea

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Joined
Sep 27, 2006
Messages
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Country
HM
well, I'll be keeping you in my thoughts...
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Smokey,

Don't dispare. Everyone deals with this news in a different way. I dealt with it just like your husband. I now consider it one of the mistakes I made along the path, but I hope you will be reassured to know that nearly 10 years later, we have a stronger bond than most couples I know. The grieving process may take a while, but if you remain available for him, chances are, this experience will only make you closer. :)

Mike
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Some folks use the fact of being ill as a way to grow, I guess. gives the rest of us something to work towards. Cindy
 
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