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12/07/2005 Entry: "ratcheting up"
'Tis the season to be...beset by anxiety. At least for me. A little over a week ago, I was in the throes of my usual start-of-winter chest cold. Being sick is no fun. Being sick with ALS is antifun. Just after I was diagnosed, my forced vital capacity (FVC, a measure of how well my lungs perform) was 132% of predicted for a man of my age. Four years later my FVC is 40% of predicted. Consequentially, coughing is especially difficult for me. And thats how I got into trouble. I had a mucous obstruction in my windpipe, and my cough is so weak that I could not clear it. Hannah and Teresa (the woman who cleans our house) were the only ones here, and I had to try to direct them to make my CoughAssist machine available to me. All this with my lungs rattling and my eyes as big as saucers. Hannah was fairly calm, but Teresa saw my anxiety and began to get worked up herself. She had no idea what the worst case scenario was, including me dying right in front of her. I knew that wouldn't happen, but I had no way to communicate that to her.
So, at the risk of spoiling the ending, I didn't die. I eventually hacked up the clog, and calmed down. Teresa, on the other hand, may not have calmed down even yet. When Linda found out about the episode, she phoned my mother, the two of them sprang into action, and now I have a care provider with me Monday through Friday from 7:30 in the morning till 4:00 in the afternoon.
She took over all of Teresa's duties, plus she has some medical qualifications. She helps me transfer from recliner to wheelchair, and can even drive me around to run errands or see movies. She is attentive, organized, and competent. I don't need a lot of help now, but she'll ramp up her care as I need it.
Also, I had a nurse and a physical therapist evaluate me for home care today. Once they get physician's orders, I'll get exercises and stretches to help me with my balance, and dealing with weakening musculature in general.
Finally, my dad requires a payment from me for consulting Linda and my mom on how to attach the side rails to my hospital bed. The requested remuneration was a description of the two women accomplishing the project. Although I am enjoined from using the exact phrase in order to keep the G rating on the blog, I can say the right mental image involves two monkeys, a football, and an act of extreme intimacy.
Thanks to family and friends for all the help and offers to help during this past two weeks, and really all through this trying time in my life. You are my guardian angels, and I love all of you.
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