Extreme fatigue

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WillowJ

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Joined
Jan 11, 2020
Messages
10
Reason
Lost a loved one
Diagnosis
10/2019
Country
US
State
DC
City
Washington
Hi everyone! My mom (PBP, dx a year ago) has been dealing with extreme fatigue recently. Fatigue and lack of energy was one of her first major symptoms, but it's really ratcheted up in the past two weeks. She spends the whole day in bed, and short trips to the bathroom with the walker deplete her energy entirely. She's able to sit up in bed after a PEG meal, but it's obvious that she's exhausted and uncomfortable. I saw another post mention that even sitting in a chair can be sucking away PALS' energy, which I hadn't thought of. Does anyone have any suggestions for increasing energy? Totally open to suggestions ranging from different chairs or pillows to food/nutrition. Thanks so much!
 
What is she getting in her PEG, and how often?
 
Hi Nona, she gets a can of formula (2cal) 3x a day, often times along with prune juice. We were doing 4 cans a day, but she was gaining a lot of weight, and we wanted to slow that a bit.
 
Hi Willow, MNDs call for a slightly higher weight than for a healthy person; everything does take more energy. She might need the extra can, or a different formula. Was her energy greater when she had the 4 cans daily? Many of us also believe that blended real food is a healthier option than formulas that are often corn-syrup-based, very different from what most of our bodies are best equipped to utilize.

Does she use BiPAP? If not, when was her lung function last tested?

Best,
Laurie
 
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