Old 02-19-2008, 08:54 AM #1 (permalink)
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Default Just Need to "Talk"

I posted once before back in May. My husband had a lot of symptoms but the doctor wasn't willing to discuss the possibility of ALS. Life happened and my son broke his hand and had to have surgery and physical therapy so my husband's problems were pushed to the back of our mind. He actually seemed to be a little better.

Initially, he had foot drop with the right leg and muscle twitches. Well his weakness has moved to his right leg and right arm. Muscle twitches are more than ever and a couple of times his speech has been slurred. He can no longer do yard work and he is tired and much weaker. He is having some problems with his lower back. His last doctor's appointment was last week and they want to do the nerve conduction again and also a muscle biopsy.

Now the bigger problem. I walked in the kitchen last night and he was trying to eat. He couldn't get his food to go down. He was eating a sandwich and when I walked in he was kinda hitting on his chest a little and drinking water.

I am so worried. Up until last week his doctor would see him and tell him to come back in 3 months. So every three months he would go and get no answers. The ALS clinic wouldn't see him without the doctor referring him.

Also, he said that some ALS patients experience "vivid" dreams. My husband has began having dreams like this in the last three months. I need to research some of this because I am not sure how the dreams fits into all of this.

Thanks for letting me "talk".
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Old 02-19-2008, 09:21 AM #2 (permalink)
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Hi there. You are always welcome to express what is on your mind! The chocking incident must have been quite scary for both of you! Maybe it is time to make sure his food is cut up very small. If that does not work, I'd get out the blender or food processor!
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Old 02-19-2008, 10:26 AM #3 (permalink)
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I hadn't been told about dreams in relation to ALS. I have had strange dreams lately, but I didn't know if it is the stress of the situation or the Rilutek or what. I would be interested to know more about other PALS changes in dreams.
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Old 02-19-2008, 11:24 AM #4 (permalink)
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I too have noticed my dreams becoming more vivid. The way I interpret this for myself is that since I can no longer experience many aspects of life in the way I used to I am turning to my sub-conscious to experience those things.

Couple examples: I was very physical before ALS. We live on edge of mountains and almost every day I either went skiing, hiking, mountain biking. Now that I can no longer do that , I sometimes dream about it. I have had dreams when I'm skiing. I have had dreams when I am bike riding and running. And they always end the same way - with my saying to myself "funny, I have ALS and didn't think I could do that. I can't walk but I can run. So, I need to be careful about limiting myself from activities I really can do"

And, when I wake up I feel quite wonderful. A friend asked me if I felt sad when I woke up and realized I really can't do those things. I said "no" in all honesty.

I just love it and want to hold on to those feelings and experiences. I don't even care if it is the Rilutek. All I know is I am able to experience wonderful things in my dreams!
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Old 02-19-2008, 11:50 AM #5 (permalink)
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My mum started having strange dreams last summer (about 6m after diagnosed). She was quite disturbed by them as in the dreams she seemed to be one of a handful of people left on the Earth and the World was about to End!

She would wake up fequently in the night and then go back to sleep just to re-join the dream.


Thankfully the dreams stopped after a few weeks so I don't know what caused them - she was in hospital at the time being monitored after having a bad choking fit.
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Old 02-19-2008, 12:22 PM #6 (permalink)
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Hi All -

Don't know if this is the case - but high levels of carbon dioxide produce vivid/disturbing dreams, and eventiually cause hallucinations. Since this is dangerous - I would get it checked and eliminated as a cause.

Hope this is not the case - Beth
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Old 02-19-2008, 04:08 PM #7 (permalink)
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Does anyone know what the FVC number is that is associated with vivid dreams or hallucinations? I'm assuming it needs to be pretty low.
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