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MystiMarie

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Joined
May 25, 2016
Messages
4
Reason
Loved one DX
Country
US
State
Pennsylvania (PA)
City
Williamsport
My husband has been having speech issues for almost 10 months and swallowing issues started within the last 9 months. His speech is almost completely unrecognizable, except for a few words here and there, and his recent complaint is feeling congested off and on for the past week. I have heard the congestion a few times several weeks ago, and asked him about it. Until today he did not admit to having any. His diagnosis is Bulbar Palsy onset ALS
He is retired navy, we have an appointment with the VA Thursday. He is going to get a computerized text to speech device to communicate, that can be upgraded to one that uses eye movement. He breaks down in tears every week or so, and it is so hard for me to handle. He did it again today at the speech therapy office. There didn't seem to be anything any of us could say.
We have 5 children. 3 are grown, and 2 we adopted, who are 10 and 11. The younger girls do not know this is terminal, I dont want to take away what time they have left to share with their Dad, and keep them as scared and upset as I am. I also wonder if this is Lymes, even though his test came back negative. Is that even possible? I know I am reaching for straws here.
This seems to be moving towards his lungs, but I can see no major weakness in his limbs or issues with his walking. I dont know what to expect as far as time frames go.
I feel like my hands are tied and I have to be strong for him and our kids. I'm afraid there isn't much time left, and I'm not ready to loose him .Im hanging on by a very thin thread. :cry:
 
Sorry to hear this news. You may want to ask at the VA about BiPAP if the "congestion" relates to breathing and/or his respiratory function is impaired (they should test this), and Nuedexta for emotional lability, if that's what the crying is, and/or medication for depression. It doesn't sound like Lyme, I'm sorry to say.

You might also meet with a counselor to discuss what/when/how to tell the girls. Sometimes it's worse not to know what's wrong when they know something is.

I'm a little confused by the diagnosis -- you may want to clarify if you are meaning bulbar onset ALS or progressive bulbar palsy. Or perhaps the distinction is not clear as yet, if he has no limb deficits.

You don't have to be falsely strong. You'll prove your strength as time goes by. Right now, just be with him, advocate on his behalf as he needs you to, since he will not be able to communicate as well as you at clinic, and likewise be a mom.

Best,
Laurie
 
I'm sorry about your husbands diagnosis and issues.

Does he have a peg?
Is he still eating and drinking by mouth? If so is it possible he is aspirating?

I would certainly want his lung function tested to see what is going on so that you can work out strategies such as cough assist and bipap to help his breathing and help him get any fluids out of the airways.
 
Marie, I feel for you so much.

I'm trying to see the situation from the girls perspective.

Emotions are running high, they are probably quite worried without realising it.

My kids were 9 and 11 when my journey began. I'm not terminal, but for a few months there, they thought I was.

I didn't come out and tell my kids, as I was advised not to until they were sure. So, even though I didn't have to have that conversation, I sat them down and discussed important things.

I made them promise me, PROMISE me, no drugs.

We discussed things like looking out for each other, making the most of family outings etc.

Maybe don't tell them the terminal side, but addressing some things may be for the best, for all of you.
 
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