As the year winds down, I take this opportunity to think about how ALS has changed my body this year. Many of you are curious about my functional abilities, but are too polite to ask. I welcome questions, so I can share with you the ups and downs of daily life, which Dan and I experience.
December 2008
- Dressing Independently
- Getting out of bed with walker
- Using walker at toilet with one grab bar
- Transfer help onto shower chair in bathtub
- Easy transfers on and off scooter (for outdoor use only)
- Driving Honda CRV with feet and walker in back seat, no help needed
- Ambulating indoors with walker only, 15-20 feet at a time.
December 2009
- Need assistance with legs getting out of bed, I cannot move them off the mattress.
- Need help transferring from bed to wheelchair
- Use raised toilet (20 inches) and two grab bars to transition from wheelchair to toilet independently.
- Need transfer help to get into shower chair in roll-in shower
- Need assistance with shoes, socks, underpants, and pants - the rest I can do.
- Need assistance with daily walk using walker from dressing chair to wheelchair, placed four feet away.
- Need assistance with cooking on stove, although I still make a superior salad!
- Need assistance with all household chores - bed making, laundry ( I do the folding!), dishes, etc.
- Order weekly groceries online through Pea Pod, need assistance putting groceries away.
- Drive distances less than 30 minutes with accessible van and hand controls.
- Neck weakness causes driving fatique; sometimes wear neck brace at home in the evenings.
- Need assistance undressing and lifting my legs into bed.
December 2008 and December 2009
- Still see everyday as "gift"
- Still have good arm use, finger use, and shoulder use
- Still can talk, yell, sing, scream, and laugh
- Still can cry buckets on hard days or when I look at Dan, who looks sad.
- Still count the hours until I will see my wonderful sons again!
- Still grateful for the love and support of family and friends!
