Emotional Wreck

[asmileaday]

My husband has always been the most mild mannered person in the world. We use to say that if a building was on fire he would calmly say "the building is burning it might be good to move on out". Almost never short tempered.

We had our first ALS clinic visit and while thought it was great he found all the negative details and plays them over and over in his head. Basically the doctor told us he would have diagnosed him if the EMG wasn't clean. The ALS reprensentative called us the next day and said that in their staffing the doctor said that the EMG results had thrown him for a loop and that what my husband has doesn't fit the classic ALS (the EMG I think is the only part that doesn't) that it is very possible that this will develop into ALS.

This week his has gotten very quite and the only time he really says anything it is very sarcastic. Mostly stuff about feeding tubes or respirators or saving money on running shoes (he use to run 35 miles or so a week). It is all just so negative. He says this is the only way he can deal with all of this. I keep trying to convince him that this could very well be a vitamin deficiency (they are checking but they checked this before - you know part of the rule everything else out). Then he says he doesn't want the ALS association people calling.

I don't know what to do. I have told him he can make all the sarcastic joking remarks he wants that I'm not taking it personally and I know that he needs to get it out. He is no longer able to participate in all the activities that he did just a few months ago so he is really bored. He had planned to start graduate school in the fall but now he won't because he doesn't want to spend the money.

He goes to work. Comes home and rests for a couple of hours and then will eat and listen to music for a couple of hours and goes to bed.

What can I do to get him out of this? It is almost like he has quit living and he doesn't even have the DX.

 

[CindyM]

Hi there. It might be a phase. I've seen it over and over on these threads that someone will learn that there might be something wrong with them and it might be something terrible and we really focus on that. I think I did it too. For some of us, it is a way to prepare ourselves. I remember cuing in on somebody in a wheelchair and watching them handle negotiating the mall and so forth-wondering what it was like and learning that I could do it, if needed.

Or it could be that secretly he hoped they would tell him it was nothing, and now he knows he may not get worse but he may not get better. It takes time to adjust to this sort of realization. I'm betting his basic cheerful self will emerge soon. :-D

 

[happy]

Smile,

I dont think that it is too unusual for your husband to feel sarcastic about the way he is feeling. It is a process of dealing with the fact that he cannot "will" himself out of this. For athletic people we will our bodies to endure uncomfortable times. To push through discomfort, and pain in our workouts. We are not used to not being in control. The fact that his symptoms are bigger than him is very frustrating. It will take time for him to adjust. I know for me I used to think that everyday Maybe this day will be differnent and it will all just go away now. But it didn't. I too became bitter and sarcastic...but after a while I began to see myself and didn't like what I was becoming. It was a hard inner search to avoid bitterness. I believe your husband will do this too. The fact that you are supporting him and finding your own support here is awesome..you're already ahead. You sound like a wonderful wife, your husband is blessed to have you by his side. My prayers are with you both to overcome and to find your purpose in this moment.

 

[asmileaday]

Thanks Cindy and Happy.

I know this is a process. Thanks for allowing me to vent here. I need to be strong for him so on this site I feel I can release just a little.

 

[happy]

smile,

Of course, dear, it's a process for you too...my prayers are with you both. God bless your hearts.

 

[brooksea]

asmile,

Sorry to hear your husband is in a funk! But, it is to be expected. I also think that, given time, he will overcome the despairing attitude.

Y'all are in my thoughts...

 

[robc]

When I was still working the fatigue, stress, and pain together turned me into a completely different person. I too had been very very mellow, laid back, extremely patient with my kids, but now found myself with a very short fuse. I didn't ever want to go out or be around people, was easily annoyed by anything even just loud noises.

I knew I had ALS but like your husband my EMGs were initially clean. I had a doctor who discouraged me from getting a wheelchair even though I was still working & very easily fatigued. He was also not very good with pain management.

Last July I went on partial short term disability through my work, working two days a week with days off in between. I got a wheelchair and an all terrain scooter for outside. The ability to move around freely without pain or fatigue really lifted my spirits.

At the same time my general doctor prescribed Celexa (anti anxiety med) for both my wife and I. I had never had trouble with anxiety before so I didn't recognize what I was going through as anxiety & I'm still stubborn enough to say I'm not sure it is anxiety but celexa sure helped. I continue to take it. I also went to different docs until I found one at our ALS clinic who was serious about pain management. If he has pain or discomfort that may be a component affecting his mood.

I'm guessing from his clean EMGs that, if he has ALS, like me it would be upper motor neuron onset or upper motor neuron predominant ALS or perhaps the term PLS has been thrown out. Upper motor neuron onset tends to progress more slowly especially if it is limb onset (although not always).

At any rate, it may be helpful for him to talk with someone like me or Billy Dyle if he is indeed showing upper motor neuron symptoms (brisk reflexes, neurogenic reflexes, spasticiy/muscle stiffness and associated weakness and/or muscle fatigue.

Feel free to send me a private message & I'll give you my contact info or email me at rob dot Chadwick at gmail dot com. I'd be glad to talk with you or with him, or if talking with my wife might be helpful I'm sure sh wouldn't mind either.

Take care,

Rob