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ALS Appointment Day

Every three months I see my ALS doc and today was the day.  My FRS is 17 and my FVC is 90%.  These values are down from 28 and 98% respectively.  Not great but not devastating either.  The main driver of the decreases are my loss of mobility as I am now wheelchair-bound.  I have had ALS for a year and a half and my decline is fairly swift...I wanted the slow variety but let's face it, I'm an overachiever.

The good news is that my loaned Permobil C300 (power wheelchair) got the Physical Therapist seal of approval and is a good fit for my body.  We got a recommendation for a better cushion, a Rojo, as well as a vendor for an iPhone/iPad support.  This is exciting as I currently cannot dial 9-1-1 to literally save my life!  This should help.

I was a social butterfly at the hospital today, meeting Linda White and her daughter, Kirstin, as well as becoming reacquainted with Vic and Jan from my ALS support group.  Additionally, I met a sweet, large black man with a spinal cord injury.  I learned that he was a victim of a violent home invasion and stilll has nightmares two years later.  Incredible!  Poor guy.  Such suffering in our world!

ALS is Amyotrophic Lateral Sclerosis
FVC is Forced Vital Capacity
FRS is Functional Rating Scale

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