Not Sure

[kmb2]

Hi there. I have been wandering around this site for quite a few months reading the different posts and just recently became a member. I am extremely sad to see the pain that so many individuals and families are going through in living with this disease.

I'm not sure why exactly I am posting...except that I need to feel like I am not alone. My husband was diagnosed 8 months ago. Up until that point we noticed different symptoms and he would put off going to a doctor brushing the symptoms off. However when the slurred speech became consistant, a visit to the GP was made. He was convinced that my husband was healthy. He did however refer him to a neurologist. I had been watching the symptoms of my husband for about a year and looking up possible causes of symptoms and I had a fear that ALS may be what we were facing.

When it came to the day of his visit with the neurologist I offered to go with him but he chose to go alone. He ended up there all day, went through a series of tests including the EMG and he was diagnosed that day.

Now here we are 8 months later, going to the clinic visits and he has only told some family members and some work supervisors. I have not been given permission to talk to anyone besides his approved core group which is mostly his family. I don't want to have just them to talk to because they don't need to be a part of the day in and day out of coping and I don't want to share some of those things.

I'm not comfortable sharing the details of maintaining a marriage and the things that annoyed us even before the diagnosis. Those are things that just didn't disappear that day. Now I just find myself feeling guilty for still losing patience over those things.

We also have 2 children , 9 and 14. They do not know but often make comments about my husband's physically changing body and behaviors such as napping frequently which is noticable because he was a very active man. Families of their friends, coaches and other social circles are noticing the differences and they often ask me about them, I give the lame response of "he's having some back trouble."

I understand that he is not ready to tell people but this is not a disease that can be hidden. I don't know how long he expects to cope with such limited support and so much added stress. I watch daily as he is unable to do things he could do the day before and it's heartbreaking. I'm not looking for answers, I'm not depressed but I am sad and I guess I just need to get some of this off of my mind. Thanks for listening.

 

[soonerwife]

So sorry you are facing this! We know what you are going through and are here for you. If you need to vent, ask questions or anything else, just know we are here!

 

[affected]

welcome!

I think it's fairly common at first that the PALS wants to keep it secret as they want to feel as normal as they can pretend to feel. The CALS wants the support of at least certain people knowing.

It's good that you have started to talk here - that way you are honouring his wishes, but you can talk with others and have some support

 

[Ells]

kb, I'm sorry your family is going through this.

In time your husband hopefully will accept his diagnosis. I'm a bit worried at keeping it from the kids though - if they notice changes, so will their friends - and kids appreciate honesty.

I know how difficult it is when kids are in the family - mine are 12&14 - but I also know how accepting, adaptable, caring and helpful they can be.

 

[konagirl]

Hi there,

If your husband does not want to talk to people that he knows personally about this, would he entertain the idea of talking to someone professionally? It may help him find the right way to tell people when he is ready, the right words to use. My husband and I were having a really hard time finding a way to tell our children, we met with a counselor to get some pointers....when, how, where, the right words to use....it was very helpful. My husband was very afraid of the kids knowing (especially our son ( 8 ), our daughter (3) is really too young to understand), he gets very emotional when it comes to them and was afraid of crying every time they hugged him. We told them two weeks ago though and I will say.....now that they know, now that we have all cried together....its better. I can see a heaviness lifted off his chest, and can feel it off of mine, things are so much more open and honest around our house now....and it feels better.

As far as telling other people, he will once he is ready. The more people he tells, the easier it will get and hopefully he will realize how valuable the added support can be. Maybe you could get him to agree to you telling one or two close friends or family members, so that you can have an outlet too? Everyone needs a shoulder to cry on. I'm so very sorry you are going through this.

 

[kmb2]

Thank you to all for your thoughts and suggestions. Just taking it one day at a time and hoping to make the best of every moment. Thank you for welcoming me.

 

[starente15]

After my dad passed, I found he was corresponding with his old war buddies. He never told them he had ALS, just dropped off the email chain one day. I ended up letting them know why. He had a hard time accepting the diagnosis and I don't think he ever really did. Your husband may never be ready to share it. Just try to support him as much as you can. So sorry you have to go through this.