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LisaM

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Joined
Jan 9, 2008
Messages
21
Reason
Loved one DX
Diagnosis
11/2007
Country
US
State
California
City
Los Angeles
My father has been experiencing the symptoms of ALS for 4 years and was diagnosed 2 years ago. We have watched the decline go from his legs onward. The disease began to significantly affect his diaphram 8 months ago. Currently he can't move an inch and can only make a sound or two. I can't even imagine being trapped in that way.

He has had recurrent panic attack type episodes that come on for a few hours maybe 4 times a week. They have been horrible but there was a start and and end to them. the last week he is in a constant state of panic, and the last two days have been unbelievably difficult. He can't get comfortable, needs the same parts of his body readjusted ever moment, etc. It's been a nightmare for him, but a caregivers nightmare also. Every person in the house is yelling and screaming out of frustration.

His ativan is not working, or at least not enough. His usual medication regimen includes codeine, requip, baclofen...all help to calm down but they are not doing enough. Is there anything someone can recommend for this? He has a bipap but refuses to use one because it makes him feel more trapped. We talk to him, tell him stories to get his mind off stuff, but nothing is helping and it has gotten out of hand the last two days.

Any input would be helpful.

thanks,
Lisa
 
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Re: what is going on? I need advise

I can only suggest ask the doctors for help! There has to be something.

But know I am praying for your situation right now.

love and prayers, jen
 
Re: what is going on? I need advise

Please have his doctors put him on hospice. They will be able to provide the comfort and medications he needs.

Get in touch with the ALS Association. They may be able to provide you with counseling and advice on how to better deal with the situation.

Good luck to you and your family.
 
Re: what is going on? I need advise

I second CJ's Hospice recommendation. Where I live we have inpatient Hospice units that can be used for short term crisis management or caregiver respite. Individuals are admitted for a few days to a week or so to address issues that can not be done at home such as re-evaluating pain medications, etc. This was my first thought when I read your post but Hospice has other services that may offer support directly in the home. You can speak with a Hospice representative for information only and then decide if the program will work for your Dad and family.

My heart goes out to each of you.
Dana
 
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