dilemma: should I prepare my husband for the worst?

[vivi]

As you know by now, my husband has been to a neurologist 2 weeks ago, and had an EMG. The doctor said the test was inconclusive, and it could be nerve root damage or MND. We have to go back for further tests in about 2 month.
My husband has not the lightest idea what MND is, or ALS, hasn't done any research on it, and pretty much convinced that he's got a nerve damage.
But I am very stressed out about it, and went to a psychologist today, who suggested that I should tell him the real reason why I am upset so much.
But I am not convinced that it would do any good. I probaly would feel better, but it's not about me.
What would you do? Would you prepare your partner for the worst case senario or let him think as long as he can that everything is fine. Over all the nerve damage was not ruled out either.
Thx again

 

[joelc]

Why are you making such a big deal out of this?

He might not even have something like ALS.

Talk to him, what good is it doing to keep your fears to yourself?
That is what marriage is all about - share your feelings with him.

At this point it is about you so trust him and talk to him.

By the way - having ALS isn't the end of the world unless you make it. A person can live a fulfilling life in spite of ALS.

Sorry if this sounds a bit harsh.

 

[laurel]

Hi Vivi,
When my husband was deteriorating and undiagnosed, he was feeling so unwell that I never really spoke openly to him about my concerns. I didn't hide the situation totally though. At one point I did say something like "the doctor is unsure whether it might be ALS". I got little response from him because he was feeling so poorly. But a month or so down the road, he indicated that he had googled ALS which surprised me as he didn't really react much to my comment about ALS. He never got himself into the state that I got into i.e. pacing, not eating, non-stop worrying. He just said that he would wait to see what the next doctor had to say. I think Joel is right about being open with him. Mind you I don't mean that you should over emphasize your worries. I think I would be honest that you are worrying and why, but not go into a lengthy discussion of your fears. My husband knows that I can be a worry wort and make a catastrophe out of small things so I don't think I really scared him too badly. I tried to focus on the positive stuff I had read i.e. that it could likely be autoimmune, but I was fretting terribly about ALS. I think your husband and you need to be a team with this issue. Take care Vivi. I understand totally where you are coming from. I think we are kindred spirits.
Laurel

 

[laurel]

Hi Joel,
I just replied to Vivi and got a message that what I said it had to be approved by a moderator. That's a first for me. I didn't refer to any web sites or anything and didn't say anything outlandlish to my knowledge <g>.
Laurel

 

[olly]

hi vivi.
personally,i would not tell him anything at this stage and wait for the other emg and results.
i dont see the point of worrying him if it turns out to be a damaged nerve problem.
but you can not take all the strain of this on your own,it must be so hard for you to keep it all bottled up.
its only a couple of months that will fly by,till then confide in friends and family about any concerns ect.
you can pm me anytime you need to talk:-D

 

[ptich]

In my opinion, do not tell him anything. You will make him anxious, and anxiety multiplies ALS symptoms manyfolds, or even create them from scratch if there were none. Whether he has ALS or not, the only thing you will achieve is to create a stress for him. The diagnosed, either way, may take many months or years.

 

[Marjorie R. Wilcox]

Vivi,
We all react to things differently, and I don't know you or how you always react. Only you know whether or not it's a good idea to share with him and how he would react. But I do know that you don't know yet what he has, or what the prognosis is for life span.

Even if it is an MND or ALS, you don't have to despair and go crazy. It is best to take things in stride and react with a calmness you might have to draw on from within.

The diagnosed doesn't change who you are or how you live. It just means you have to adapt. You make changes as necessary and you go on just like before.

To be frank, you can't go around thinking bad thoughts, but actually make yourself think things like " We're going to enjoy every day. We're going to do all the things we always wanted. We're going to smell the flowers and make wonderful memories." No one has a crystal ball that works. We never know what a day can bring forth.... good or bad.

My husband has had a diagnosed of ALS for 18 months. Now he is going to have 3 MRIs to diagnosed again... he could have a tumor somewhere too. I year ago he was in an explosion that almost took his leg. He went through several bone graft surgeries for that.. and he has diabetes. We are doing just fine with all this and Rick has a wonderful attitude. That's where it's at. He could live 25 more years or a few months. We live the same either way.

 

[John1]

Since you asked, I'll chime in with my thoughts on your poll. I agree with Joel. Firstly, it's quite possible he doesn't have MND. Regardless, he is not a child, he's an adult. He doesn't need protection, he needs the sharing of fears and hopes with his partner that is one of the biggest benefits of a good relationship. Frankly, I can't imagine he would handle it any worse than you are. Tell him your concerns.

 

[liz]

I had ALS for two years before being diagnosed and I'm glad that my husband and I didn't spend that time preoccupied with the worst case scenario.

 

[joelc]

I'd be willing to bet he knows more than you think so talking to him isn't going to change anything and you will get the help and support you need.

 

[John1]

Liz, I'm glad too that I was undiagnosed for a while but the problem here is that one partner is obsessed with fear of possible ALS and is trying to cope with it all alone. I think the partnership would do better if her fears were shared. The stress on the marriage with her having to lie to explain away her obvious agitated state is likely damaging the relationship.

 

[rocmg]

Chances are, your husband knows that something bad could be going on. I never told my mum whenever she asked me if her symptoms could be ALS... I guess the crying gave away what I really thought though. I don't know if it's a good thing to say that out aloud just yet. In fact, for weeks after mum's diagnosis I refused to let her see anything with the words "ALS/motor neurone disease" written on there. that would just seem to cement the reality of it all.

 

[Zaphoon]

I agreewith Joel. At this point, it is fruitless to worry about having something that he may not even have. Besides, it seems to me that perhaps your husband is trying to avoid doing that for your sake as well as his.

Think of how silly you'd feel for spending time and energy dwelling on the ramifications of a possible ALS diagnosis and it winds up being a pinched nerve. As Joel has stated, there are means available to maintain a full, meaningful life even with ALS.

Just some thoughts...

Zaphoon

 

[BethU]

Vivi ... I remember when my most beloved aunt was dying of colon cancer in the 1960s. In those days, people didn't even say the word cancer, they used euphanisims. (when John Wayne got lung cancer he referred to it As "the Big C.; you still see death notices in the paper saying someone died "after a long illness," code words for cancer; even some doctors wouldn't tell people they had cancer ... they would only divulge it to close relatives.)

With my aunt, everybody knew (I'm sure including her), and everybody pretended not to know, and family get-togethers were agonizing. What horrified me most was that it was so cruel to my aunt ... she had no emotional or psychological support, no one to turn to for answers to her questions, and she was forced to play the same "game" everyone was playing.

My worst horror was that some day I would have a serious disease and no one would tell me the truth.

My suggestion, and this is a very private decision you and your family must make, but I feel your husband has the right to know what is happening with him. It is his life. As Joel says, there are so many ways now to prolong a PALS life. It is unfair not to let your husband know what kind of decisions he may be faced with, so that he can think about these issues.

And ... also as Joel and Zaphoon said ... you don't even have a firm diagnosis yet. There are other possibilities besides ALS, and if it is ALS, there are ways to live a long and fulfilling life with the medical advances that already exist. I think he should certainly be involved in the decisions that will be coming up whatever the diagnosis ... in fact, he should be the one MAKING the decisions.

Good luck to you both.

 

[liz]

Food for thought

Samples from http://www.quotegarden.com/worry.html.


Drag your thoughts away from your troubles... by the ears, by the heels, or any other way you can manage it. ~Mark Twain

Worry never robs tomorrow of its sorrow, it only saps today of its joy. ~Leo Buscaglia

Troubles are a lot like people - they grow bigger if you nurse them. ~Author Unknown

Worry is interest paid on trouble before it comes due. ~William Ralph Inge

There are more things, Lucilius, that frighten us than injure us, and we suffer more in imagination than in reality. ~Seneca