ANOTHER MACHINE COMES INTO OUR LIVES!

No, this is not a picture of me as a preschooler, but IT  IS a picture of a breathing assist, non-invasive machine called a Bi-Pap.  This is similiar to a C-Pap machine which many people use for sleep apnea.

In late August at my ALS clinic appointment at Massachusetts General Hospital it was determined that my lung capacity had weakened.  After further pulmonary tests, my doctor, Merit Cudkowitz, recommended that I use a Bi-Pap machine at night to assist with breathing, as it would relax  the muscles in my diaphram and give them a little rest at  night.

A respiratory therapist visited and set me up and currently I am sleeping with the machine about 3 hours per night through a nasal mask.  I need to increase the time to six -eight hours, but this is only the first week.  Needless to say, this is not the sexiest bedtime experience, but Dan and I have some alternate ideas.  It actually has NOT been as much of a hardship as I imagined, but  it has had a big psychological impact on us, as my body obviously weakens.  The advice one hears, "Take a deep breath!" seems to have new meaning.

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!