THE ODDS (Debbie Does ALS)


12.17.2008

A Day in the life

Morning Debacle
I got to work this morning at 640. The coffeemaker was broken and we had no Internet. I placed a troubleshooting call to the coffeemaker company and helped Steve identify who we needed to call about the connectivity issue. As well, the coffee cups I had set aside for the VIP visitors this morning had been "compromised," so I had to run a load of dishes. I gave Nick instructions regarding the coffeemaker, I gave David instructions regarding the coffee cups, and realized I had not eaten any breakfast. I rushed to the deli, ordered a breakfast sandwich, and ate it as I walked to the Metro. When I got to the Metro elevator I pulled my fare card out of my pocket with my ever dependable right hand; the card slipped right out of my fingers and into a puddle. Since my left hand was occupied holding the sandwich and my purse, I bent down and managed to pick up the card with my right. I wiped it off as best I could and hoped it would work in the machine. It did. So, off to clinic.

Waiting Room Observations
I found a nice surprise on the train in the form of Kendall. She was headed to Metro Center so we chatted a bit as we rode in.

Got to Foggy Bottom in really good time. Walked a block to the clinic and headed up to the seventh floor. There was a new face at the registration desk and I don't think she was very efficient. She must've sensed I didn't think much of her because she never told anybody I checked in. I was early, so I didn't expect to go in right away, but by 840 I knew there was a problem. I eventually told someone else I was there and was sent back to my room.

I have to note, however, that while I was sitting in the waiting room I noticed something -- I noticed people using their hands. I saw a man pick up his newspaper, another taking off his coat, a woman adjusting her top. I was struck with the feeling that I would give anything to be able to perform such insignificant tasks. These people weren't even aware they were using their hands -- we never pay attention to such things -- but I was and I do. When I arrive at work in the morning, I have to pick up the paper from the floor. To do so, I bend down and push the newspaper toward my foot, then I put my whole right hand under the paper and scoop it towards me. I should point out my left arm and hand are full of my coat, my keys, my purse, and the mail. Anyway, that was a pretty cool moment, noticing everyone using their hands. Don't take it for granted.

Good FVC
Today's FVC was 92%. And that in spite of this dumb sinus thing I have going on. I was leery of her at first but I really like the pulmonologist now. I don't think she knows quite what to do with me.

I also got my flu shot.

Wrong Room
I'm sure I've mentioned that I decline a visit from the psychiatrist when I am at clinic. When he appeared in my room this morning, I looked at him questioningly and said "wrong room," and away he went.

Searching Looks From Gwen
I had brief and enjoyable visits with the occupational therapist, the physical therapist, the speech therapist, and the dietitian. I dazzled them with my fancy footwork, my swallowing, my raised eyebrows, my puffed cheeks, my healthy (if plump) weight, my general good health. I've become quite fond of this team. They seem to like me, they seemed genuinely interested in my well-being, they are kind, and I think it pleases them that I don't progress quickly.

I spent a longer time with Gwen. She is the nurse coordinator for the clinic, so she has a lot on her plate. She asks all the comprehensive questions, and tries to get a sense of where we patients are in our disease. We had a good conversation and I told her that I was going to be speaking at the church on Sunday. She cautioned me not to become overwhelmed, and I told her I knew how to set boundaries. I explained to her that I felt I was pretty well-adjusted to the situation, that I was not happy that I had ALS but I had mostly accepted it, was adapting, and was happy in spite of it. I asked her if other ALS patients had this attitude, she said no. During our conversation, Gwen looked at me very intently, searching my face to make sure I was sincere and not just putting up a brave front. I think she was satisfied.

Dr Bayat
Next came Dr Bayat. I think she, too, enjoys seeing me because I am so slow. More questions and the standard physical examination resulted in the same singsong response, "you are a slow progressor." She wanted to test my grip strength so went off to get the little gadget. While she was gone I pondered her words and thought about the big picture as well. I have ALS. Why? Why is it me? In the big roll of the dice, how did I end up here? I'm at the point now where I really don't ask this question very often. I think about it, but not much. The doctor's comment about my slow progression resonated in my mind, and I asked the same question: why is my progression slow? All those other patients who progressed so quickly -- why is my disease so different? Why am I so lucky -- and I AM lucky.

She came back with the gadget which indicated my grip had weakend in both hands. No surprise there.

Justin/NIH
As Dr. B. and I were finishing up, in came Dr. Justin Kwan from NIH. After some introductory pleasantries, it was revealed that Justin is involved in a research project and wants me to participate. It's not a drug trial, it's research to understand the effect of ALS on mood and memory. It will involve several visits to NIH and several very intense MRIs. I agreed immediately.

My final meeting was with Ellen Cochrane, one of my favorites. She is the patient services coordinator for the ALS Association, and is such a gem.

David Sedaris
On to other things. One of the books on CD that Jenny brought to me was David Sedaris live at Carnegie Hall. I've heard him on NPR, but only in short bursts. This CD had me laughing so hard I had tears running down my face! I highly recommend.

Grocery Stores
I left work and headed home. I called Cecilia and told her that I had to stop at the store and gas station on my way home. The first grocery store is a Bloom, formerly Food Lion. You know, a new name doesn't change a thing. It's still the yucky store it always was. Anyway, I was in search of a birthday cake with chocolate icing. I went to the bakery only to discover that all their sheet cakes have white icing. Grumbling, I left and headed to the Giant. My confidence in them was rewarded; when I walked in I could see the chocolate icing sheet cakes in the case. I walked over and was just about to pick up a cake when I realize what I thought was chocolate was in fact cardboard protecting the plastic case of a tray of cupcakes. I groaned. Fortunately there were two smaller cakes with chocolate, so I grabbed them.

In between grocery store one and grocery store two, I stopped at a gas station. The last time I purchased gas, a nice -- and very strong -- man put my gas cap back on. I can usually get the gas cap off, but not tonight. Luckily there were lots of people at the station so I was able to get help.

Ken
Cakes purchased, gas purchased, it was finally time to go home. Just as I was backing into the driveway, Kenny called. He is such a dear friend and his call was the perfect way to end the day.

Reality
Slow progression, funny CDs, and conversations with friends notwithstanding, I do occasionally get hit smack in the face with reality. I had one such smack today, but I checked it before it was too painful. Well, almost.

Keep smiling.

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