THE ODDS (Debbie Does ALS)



I saw my pulmonologist on Monday for my quarterly checkup. In the early days  of my disease these visits made me very anxious; I started out with an FVC of 104% and hated each time the number dropped. In June, when it dropped from 70% to 49%, I wasn't anxious anymore.  Rather, I pretty much expected it. When I went to the doctor on Monday I also expected a drop but I have to confess I didn't think it would be such a big one.

My doctor asked me if I had considered a peg (feeding tube). I shook my head because I do not intend to use one at all; I am still chewing and swallowing quite well. She then asked me if I wanted to order a bi-pap. I told her I didn't want one, which led to a discussion about the function of the machine. It is not intended to prolong, it is intended to provide comfort -- making breathing a little easier. I agreed to try one.

The bi-pap technician came to the house on Tuesday and fitted me for a full face mask. The first time I put it on I thought I would suffocate; I was claustrophobic and very distressed. Subsequent attempts were more successful and I managed to wear the mask for several minutes before I signaled it was time to stop.

When Lisa came that night, we tried again as we were doing range of motion exercises. After putting the  mask on me, Lisa positioned me on my bed. I chanced to look in the hallway and saw Cecilia; frantically I signaled to Lisa to shut the door so my daughter would not see. Doors shut, Lisa proceeded to do my exercises while I did my best to adapt to my newest gift from Louise. I tried to relax, to get into a rhythm, but it did not work.

I'll try again but I think I will send the machine back. The only thing I will ever suffer through in spite of discomfort is a beautiful pair of shoes.

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