confused and scared

[dhut]

hello all,
I'm new here so please forgive me. I am terribly worried about my husband. About a year and a half ago I noticed that my husband's speach became slurred. Sometimes I would have to ask him 2 or 3 times to repeat what he said. He just accuses me of not listening. I also noticed he has started dropping things, falling, and chokes almost everytime he eats. and let's not forget the angry outbursts. About 1 1/2 years ago, he lost his job due to a corp. buyout and has become severly depressed. Around that time, I swear the man had a stroke. We were sitting in the living room watching tv and he alll of a sudden vomited. I looked at him and one side of his face was slack and his arm was curled in. I tried to take him to the emergency rooom but he would not allow it; said he was fine. I helped him to bed. the next morning he woke up and seemed fine. face was pretty much back to normal, but he was exhausted but went to work anyway. Im not sure if his symptoms are getting worse, or I'm just noticing them more now that he is home and not working. He recently fell and broke his foot in 3 places and have to have surgery to put a pin in his foot. After the surgery, the doctor approached me and told me it took an enormous amount of anesthesia to get him to go under. Also, he noticed arms and legs kept curling in and he had "clonus" or "clonis". later, the anesthesiologist approached me and told me that he noticed my husband has a problem with his tongue and windpipe. Both doctors recommend a full neuro work up. Until this point, I had been worried about the symptoms but not sure if they were all in my head. family and husband didn't see what I was talking about. I had never mentioned these concerns to the doctors, they noticed everything on their own. Now, what makes this situation even scarier, is my husband's mother died of what the doctor's called pseudo bulbar palsy. This was over 12 years ago. Apparently Mayo clinic couldn't identify exactly what was wrong with her, but said that was the closest they could come. My husband says there is nothing wrong with him, and refuses to go to the doctor. He had an MRI almost 2 years ago and reg. doctors (not neuros) said it was clear. I am stumped, and scared.

 

[momap53]

Sounds like you two have been through a lot. He needs to have a good work-up by a physician who can then make the appropriate referrals. I'm sorry I don't know what to tell you to do about getting him to agree to see a doc but he definately needs an evaluation.

 

[CathyP]

Ur hubby sounds like me.....Extreme dislike of Doctors & Hospitals....they are for SICK people....why would I need to go? NOTHING will ever be wrong with me....I'll get over this...it's only temporary!
FEAR & DENIAL were my big hold ups in seeing a doctor. Since my symptoms started out gradually I assumed it was temporary & I would get better. As things progressed with me I was going from doctor to doctor & one test after another. I was getting so frustrated. I even remembered saying "Even if I only have ONE day left to live I would REALLY like to know what is wrong with me".
Ur hubby is probably afraid he has the same or worse than what his mom had.
If he continues to get worse eventually he will come to a point where he will WANT to find out what is going on. The unknown stuff that goes on in our bodies is SCARY! But, in our mind we NEED to make sense of it.
Do you have family members or friends that he listens to and seeks advice from? You might try that route.
Good Luck....I hope you can convince him to see a doctor that will do as Deb said. It's all up to him!

 

[HelenL]

I also was in Denial... I often joked that I was in Denial, not Denali, a national park in Alaska.

Can you go ahead and make the appt and tell him about it saying "let's just put my mind at ease about your symptoms..." type of thing, or "do it for me...?" You do need to know what's wrong, so you can plan accordingly.

Good luck, you're in a doubly tough spot.

 

[sadiemae]

Have you mentioned your concerns of ALS to your husband? If it is ALS, and he has been unemployed for over 6 months he would qualify immediately for SSDI and Medicare

 

[skipper66]

Don't take no for a answer. Make him an appointment with a neurologist and take him. My mom had cancer and I'd call her doctor and she'd get mad. But, then once she went she would thank me and say I did the right thing. I have no idea what could be causing your husband's symptoms but they sound like they need medical attention a.s.a.p. Good luck to you.

 

[brooksea]

I assume from what you said that he has no income. Perhaps you could persuade him that getting checked by a neuro would provide the d x needed to collect SS Disability and Medicare (as Sadiemae mentioned), something he has paid into and deserves to receive. We can only hope that is not the case, but if it is, why lose out on the income and medical insurance that could be provided?

 

[dhut]

My husband denies anything is wrong with him. I told him about the soc sec. he just denies anything is wrong. When I (and his father) told him what the doctor's said, he accused his father and I of conspiring with the doctors. He thinks we are trying to label him as crazy. He has screamed and yelled at his dad. I just don't think we are going to be able to get him to go.

 

[jamiem]

My heart goes out to you. I know it is difficult enough just to watch him suffer and is compounded by his denial. I am praying for you. Jamiem

 

[dhut]

update: finally got my husband to agree to go to the neuro. Doc def said MND, just not sure which one yet. No coinsidence that his mother died from one. I realise I have a long road to haul, and am now worried about my 5 year old, but can't focus on that now. I just don't know HOW I am going to deal with all my husband's anger and fits.

 

[momap53]

Thank goodness you got him to the doc!
Are the anger and fits new? Is this how he has always handled stressful events? By all means, talk to his doc about his behavior to see if he can offer an aide in the form of medication and/or counseling. I'm sure he's grieving and anger can be a big part of it. Talk therapy really can help. Encourage him to join a support group so that he can talk to others who are going through the same thing. Does he have a member of the clergy that he can talk to? A MND is enough to deal with, you don't need these behavior issues thrown in on top of it.

 

[panguinjen]

Dhut,
This is a great place to rant and rave and get advice. You have had a rough time and I feel for you! We have broad shoulders to cry on. Thinking of you!

Jen

 

[HelenL]

dhut, I'm so glad you got him to the neuro, sorry you had to be here, but welcome.

Don't overwhelm yourself with everything right now, take it one step at a time. Social Security is obviously the first thing to do, and talk to his neuro about the outbursts, maybe he can take a med to ease it.

Remember to hug your son! See if hubby will come on here and check out the posts by barry, he had bulbar for years and kept on smiling... also had a young daughter. He was an inspiration to all of us, and hoping your hubby will find so as well.

Good luck, and keep us posted.

 

[dhut]

Helen, he won't even admit anything is wrong with himself. and he won't let me apply for disability

 

[HelenL]

Does he know that people can get off disability is the docs are wrong and it clears up, but that its automatic approval if you apply right now and that will give you some income while you wait? Also that disability goes by the last 10 years, so don't delay too long.

If thar doesn't work, maybe you need to get the process started with a doc's note?