First Post - Serious Question

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lindsaydisbrowe

New member
Joined
May 4, 2009
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6
Reason
CALS
Country
CA
State
Ontario
City
St Thomas
Hi There,

My boyfriend Steve was DX about 6 years ago at the age of 25. He has been doing okay so far, but in the past few months seems to be having a few more issues.
In the past week or so, he has lost his voice and is now having trouble breathing when he is sitting up. While he is lying on his side, he is able to breathe and seems to be able to talk a bit better. I am just wondering if anyone else has experienced these issues and would be able to give me an idea of what to do? We are both scared and not sure what to try.
Thank you for your help!
Lindsay
 
I am not sure what to recommend other than to encourage you to make an appointment with a pulmonary doctor. With ALS the best breathing position is upright. Any reclining position or laying down is worse as with a weakened diaphragm you need the help of gravity.

I hope you can get some answers soon.
 
My husband likes to lay on his left side with the hospital bed slightly elevated. But he is on oxygen when he is not on his bi pap, so that might make a difference in why that is.
Bless you for being there for him.
Mary
 
My breathing gets restricted according to different body positions. Like Joel said, my weakened diaphragm/pallet is effected by gravity now.
 
Hi Lindsay,
I saw you boyfriend was diagnosed 6 years ago, how is he doing now because I read in last post he had some more problems?
I read it was a difficult diagnosed at the time, how come? Can I ask what is initial symptoms were and how long it took him to get diagnosed?

Love Elise x
 
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