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Author Topic: How to help my hubby with his ALS fear?  (Read 1275 times)

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Offline Sunlover

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Re: How to help my hubby with his ALS fear?
« Reply #10 on: February 12, 2014, 05:35:20 AM »
Sounds like really bad health OCD and I'm glad he is getting some medication.  There's no way to just stop what he is doing (the swallowing tests, etc) on his own.  What happens is his anxiety builds to a level that he just HAS to test.  Then he'll do a cheerio test and it will relax him for about 10 minutes, then he'll start thinking,"Maybe I didn't do it right that time"  maybe this, maybe that... anxiety builds to an uncomfortable level again and he has to do it again to take that anxiety away, and it goes on and on.  I know, I've been there (not with ALS or swallowing, but the checking and checking and checking until I thought I was going to go out of my mind)  You have no idea how bad I feel for your husband, I am almost in tears because he is locked in a living he// You are one special wife to help him so much and not get frustrated and angry with him.
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Offline Hypo84

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Re: How to help my hubby with his ALS fear?
« Reply #11 on: February 12, 2014, 07:45:30 AM »
I agree with others, it's great that he started taking medications.

With anti-depressants it can take even 1 month before you see any benefits and in some people there are side effects during that period but encourage him to keep taking them.

If you have money, therapy will certainly help him.

Finally, it's great to see how supportive you are. He is a lucky guy to have you.
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Offline HeatherJoy11

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Re: How to help my hubby with his ALS fear?
« Reply #12 on: February 12, 2014, 01:39:19 PM »
I went through this exact same fear a couple years ago...I was twitching all over - from head to toe every day. I would get this crazy headaches and weird head pains. My limbs would feel heavy and numb. I felt like I was tripping over my own feet. I was so scared that I had ALS that it consumed me for a while. I had multiple neurological exams. I even went to a neurologist and I also had a head CT scan and an EMG. NOTHING WAS WRONG. When I tell you I had all of the symptoms of ALS , I did....because I Googled my way into believing that I did.

The neurologist told me over and over it was anxiety. And he told me this (which you can share with your husband): "I can tell just watching someone walk from the waiting room to the exam room that something is neurologically wrong. I watch every movement you make before you even step in here. And as I examine you, it confirms my initial diagnosis: you have anxiety."

I had benign fasciculations. When you are so anxious that your body starts responding to the stress in this way, you freak out. But you don't realize that you're doing it to yourself. YOu start having actual physical  symptoms of anxiety. I remember one day watching my thumb twitch and then my palm and my thigh, and the arm. And then MY TONGUE DID. I completely freaked out.

But the neuro was right -- I don't have ALS.
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #13 on: February 12, 2014, 06:49:58 PM »
He said today that he is still thinking of ALS, but the medicine makes him care less while he is thinking.  Hopefully this is a step in the right direction!  One of his coworkers said he looked "out of it" today, which I guess is expected.  However, since his coworkers mentioned that also recently, before he started taking medicine, I feel this isn't exactly a drawback.

Good luck to everyone with your HA.  I can't imagine how hard it must be to be tormented by that.  It's really taken a toll on my husband-  hopefully he can redirect his thoughts elsewhere and have some peace.  It's really enlightening reading this board, to see what he is going through.  Thank you for sharing your stories.
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Offline soaringfalcon

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Re: How to help my hubby with his ALS fear?
« Reply #14 on: February 12, 2014, 08:53:13 PM »
That is definitely a step in the right direction.  Once you don't have anxiety over the thinking, it slowly goes away. 

Looking out of it is normal when starting an SSRI.

Again, bless you for helping him.
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #15 on: February 19, 2014, 10:23:52 AM »
I just wanted to update, in case anyone else is in a similar situation.

The medications have taken his edge away but now he is depressed.  He has an intake appt today in psych, and then will hopefully meet with the psychiatrist soon- he is now somewhat more open to counseling even though he still believes he is quite rational.  He is still absolutely convinced he has ALS.  The ENT doc said his swallowing problems were caused by anxiety, but hubby doesn't believe this.  He is going to a fancy hospital near us with an ALS clinic, to meet with an ALS doctor, and get checked out.  I would normally say this is nonsense and get angry at him, especially because we will be paying for this out of pocket, but at this point I'm praying the ALS doctor will talk some sense into him and shut this entire thing down.  I'm just hoping the doctor is ethical and doesn't order every test in the book (MRI, EMG, etc...) because hubby will freak out and think the doctor must believe he has ALS if all these tests are being performed.

On another note, he called another ALS clinic at a local university and they said they won't see just anyone- they need to see all the patient's medical records, etc..., before they agree to accept the patient.  I suspect it is because this "I have ALS" fear is common and they don't want to waste their time.  I told my hubby to apply there to see if they would reject him- because they wouldn't think he has ALS.  He said they would reject him because his ALS is so obvious that it wouldn't be clinically interesting.   :traurig001:











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Offline Hypo84

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Re: How to help my hubby with his ALS fear?
« Reply #16 on: February 19, 2014, 11:32:01 AM »
Is he taking anti depressant? He is definitely in terrible mental state at the moment.

Hopefull doctor will reassure him but it is hard to expect that since he is extremelly irrational now.
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #17 on: February 19, 2014, 01:08:05 PM »
He's on Celexa and Lorazepam.  He just started taking them though. 

Appt with ALS doctor is today.  PRAYING for good news and that he will accept the doctor's opinion.
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Offline jessica0113

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Re: How to help my hubby with his ALS fear?
« Reply #18 on: February 19, 2014, 01:13:31 PM »
Wanted to add- this is taking a huge toll on his work too.  His coworkers are all asking him if he's OK, and he is thinking about sending an ominous email to his colleagues saying he's going through some personal issues now.  I think this is a terrible idea- I'd rather he just tell someone he is having some "health issues" and let the grapevine do the spreading.  Personal issues are too interesting- people will dive into our private lives.  Health issues are much less exciting.
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Offline soaringfalcon

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Re: How to help my hubby with his ALS fear?
« Reply #19 on: February 19, 2014, 03:54:55 PM »
I was just wondering if he was feeling better.  The celexa should help with depression too.  It takes about 6 weeks to get to a therapeutic dose.  How many mg is he taking?  He may need it increased.

I would NOT have him tell his co-workers.  If he wants to say anything, say health problems.  Those are protected by law and will stop the gossipers LOL
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