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barbaraW

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Joined
Mar 30, 2007
Messages
18
Reason
PALS
Country
US
State
CA
City
Danville
Thought it would be interesting to see if there are patterns of fvc, bi-pap and mobility.

What is your fvc% , hours/24 on bi-pap and amount of mobility?

My fvc is 57%, 14/24 hours on bi-pap, mobility-able to walk ok but pressure in rib cage and shortness of breath when standing or exerting keep me just walking from chair to chair at home.

What's yours?

I am asking as the pulmonologist thinks it should be easier to breathe for me than it is and thinks something else might be going on. Anyone else have the pressure under rib cage and shortness of breath when standing/walking?

Barb
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
FVC 62% Bipap lying down. Able to walk short distannces with walker, bedroom to kitchen etc. Use power chair. Bending over in chair makes me SOB or transferring from chair to bed. Breathe fine while sitting upright or standing. Well, sort of fine.
AL.
 

The Sass

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Joined
Jul 12, 2007
Messages
21
Reason
CALS
Country
US
State
Texas
City
Frisco
Barbara,
I am cals for my mom. She has bulbar onset. Her FVC is 29%, bipap when lying down and can only use walker if someone is beside her due to frequent falls. Motorized wheelchair has been ordered. I do think you will find differences depending on what type of onset.
 

ilgal

Active member
Joined
Jul 28, 2007
Messages
83
Reason
PALS
Diagnosis
00/2001
Country
US
State
IL
City
Somewhere
Does bulbar onset mean speech was affected first? How long has it been since your mother first had symptoms and since she was diagnosed?
 

The Sass

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Jul 12, 2007
Messages
21
Reason
CALS
Country
US
State
Texas
City
Frisco
My moms was the first sign along with weight loss. My Mom's symptoms began to show in May of 2006. Diagnosed in July 2006. She is 77 so I feel like her age has also worked against her. She completely lost her voice in December and had feeding tube put in the last of February.
Sass
 

janetti

New member
Joined
Oct 4, 2007
Messages
3
Reason
CALS
Diagnosis
03/2007
Country
US
State
MA
City
Hamilton
I am CALS for my sister, who is 57 , diagnosed in 3/07 but symptoms probably date back to 5/06. Last month her FVC was 38%. She uses BiPAP about 3-6 hours per night (it gets loose and starts leaking). No mobility except head and slight upper shoulder area. Speech unintelligible. Swallowing failing (using PEG tube to supplement, but still takes thickened liquids and chopped or mushy food).

All signs point to a fast-track course of disease. No periods of plateau as yet. On hospice since August.
 
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