Category Archives: Progression

Speed4Flora

Rob and I were making our exit from the ALS TDI White Coat Affair gala in November, when we were flagged down by three women sitting together at a round table. Two of them were ALS advocates, and they were leaning in towards a third, a really lovely woman named Flora Fasolya, who was there from New York. One of the women, Michele Dupree, explained to me that Flora had been diagnosed about a year earlier, and that she needed to talk to someone who understood some of the physical difficulties she had been having.

We talked for a little while, Flora asking questions about how Rob and I manage certain parts of our day in an attempt to learn how she and her boyfriend, Chris, can adjust to their new life with ALS. I know Flora spoke with many of the other people at the party that night, too. She was gathering information, something that everyone with ALS should do. Even if no one knows exactly what to expect from this disease, and when, we can absolutely learn from each other’s experiences. Read More>

|Categories: Diagnosis, Life, Progression, Relationships | Tags: , , , , | Permalink

Assisted Living

There comes a certain point in ALS progression where you start needing the kind of help that you probably haven’t needed since you were a small child. People preparing food for you is one thing, and it can actually be quite luxurious at first. When I lost my ability to cook, I hated it, but I also felt so appreciative when a hot meal appeared in front of me, the result of someone else’s efforts.

However. People bathing you, lifting you on and off a toilet, carrying you into bed, those are the things I believe Lou Gehrig was talking about when he called this disease “infantile paralysis.”

I took my last unassisted shower in September. Just last week, I completely lost my ability to transfer and use the bathroom alone. Privacy has deserted me…and I have helped it along by sharing that last bit of information on the Internet.

Rob and I received a piece of advice from our midwife after Scarlett was born. She told us to respect the baby. This meant to talk to her and tell her when we were moving her, when we were dressing her, when we were pouring water over her head in the bathtub. At the time, I thought it definitely made sense, but I wasn’t sure it mattered much to our chunky little monster, who was generally being cooed at and kissed so much that she probably thought we were trying to eat her. Read More>

|Categories: Life, Progression, Relationships, Vanity | Tags: , | Permalink

The Good, The Bad, and Everything Else

Some days, when I sit down to write this blog, I struggle with what tone to convey. I want it to be realistic, but not too negative. Optimistic, but not phony. Ultimately, I want to make sure that what I say is true. But throughout any given day, there are so many truths, and they all have moods that go along with them.

I now have to use a fist to punch the microwave open. I rarely bother doing this, but in a pinch, it does work. My fingers get tired of typing, and today I tried using my knuckles instead (not recommended.) I sometimes open the refrigerator, see what I want, and know that there is absolutely no way I can get it.

That’s all on the downer side of things. It’s true that I am feeling more paralyzed lately. It’s a word I used to use figuratively—unable to make a decision, rooted to one spot in fear. Now, it’s really quite literal. My arms are heavy, and lifting them requires an energy that I once reserved for gym visits or moving day. Read More>

|Categories: Life, Meditation, Parenting, Progression | Tags: , | Permalink