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ALS Appointment Update

The good news is that my FRS (Functional Rating Scale) remained the same at 29. Bad-ish news is that my lung function FVC (Forced Vital Capacity) went from 110% in January 2013 to 98% in April (today).

What's really going on? Head-to-Toe: Breathing is good, swallowing is mostly good (must be mindful, avoiding popcorn, small pills do not trigger swallowing), no drooling. Woo-hoo!

Cannot write (right-handed), fingers curl inward and tremor or trigger upon effort to use, much atrophy and muscle spasming, cannot raise right hand/arm, "frozen shoulder" resolved through massage therapy. Left hand beginning to atrophy and lose strength and dexterity. Employing speech recognition software to "write" with computer.

I walk with assistance, cane or walker. Painfully slow on stairs and shaky. Cannot recover from falls. Use power wheelchair in my home. No wheelchair van, yet. Can get severe muscle spasms in thighs, calves, and feet.

Eating requires assistance to cut food but I can feed myself with special utensils. Drinking using small light cups and narrow waterbottles. Restrooming requires some assistance.

Due to my level of progression, we have a friend moving in to help with caregiving around May.

In case you were wondering, Life is STILL good.
 
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