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missmineau

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Joined
Dec 2, 2010
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43
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Loved one DX
Country
CA
State
Sask
City
The land of living skies
My mom, I am sure like everyone else, has some really good days and some really bad days. She says she notices some days/weeks her strength or voice is better or worse than other weeks, can the symptoms fluctuate? Her breathing is down according to her pulmonary test, not enuff to have to use anything yet, and her blood oxygen level, according to the thing they put on your finger(sorry dont know what its called) is 97%, this all confuses me. She is in respite right now so this all info I have recieved from the care aids. Thank you in advance for your info and advice.
 
I think like everyone I have bad days and good days. I have noticed that sometimes my symptoms seem to fluctuate. I am on a bipap but besides weakness in my left arm and leg can function ok on my own, but get a little winded doing anything. I feel like Forest Gumps box of chocolates someday s, you just don't know what your going to get.
 
My doctor tells me the disease progresses at a steady pace, however I have good days and bad days. If I do a lot today, I will be very tired and weaker than "usual" tomorrow. Same thing if I don't get enough sleep.
 
Me too! Going to try to pace myself. We have company coming tomorrow and staying through Sunday. Everyone is bringing something so all we have to do is the turkey diinner and a pot of beef stew tomorrow. The weather forecast isn't good for drivers. Hope everyone makes it ok. Driving in snow/ ice mix over mountains can be tricky. Happy thanksgiving to all!
 
I think like everyone I have bad days and good days. I have noticed that sometimes my symptoms seem to fluctuate. I am on a bipap but besides weakness in my left arm and leg can function ok on my own, but get a little winded doing anything. I feel like Forest Gumps box of chocolates someday s, you just don't know what your going to get.

Forest,
Here's a little hint for you... read the chart on the inside of the box top!
Love,
Jenny
 
Strength-wise, every day seems about the same as the one before it. For example, transferring from the shower chair to my wheelchair is pretty challenging, but about the same every day.

If I over-fatigue my muscles, they can take time to recover. Muscle pain may limit activity for a day or so. Clinical weakness probably hasn't changed however. Please try not to overdo it!

I have good days and bad days emotionally, though. Fortunately, the good outweigh the bad by a wide margin!

Take care,
-Tom
 
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