Wednesday, December 9, 2009

Looking forward !!! Looking back!!

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!

1 comment:

  1. Thank you for posting this! You are right, I imagine we are not the only friends/family who think about you constantly but don't want to bother you. It is wonderful all you are able to do, especially the laughing, crying, singing and screaming! Your and Dan's shared optimism is a something we all should strive to achieve!

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