Monthly Archives: January 2015

Lorri Allen

I received some crappy news last night. There’s probably a better word to use than crappy, but that’s the one that comes to mind. A fellow mom with ALS passed away, leaving behind three kids and a husband. Lorri Allen was diagnosed with ALS in March of 2013. She was 48 when she died on Dec 21, 2014.

I knew Lorri only through Facebook. We were part of a small group of moms with ALS, a group I value immensely. Thoughts, hopes, fears, laughter…we shared them. At first, Lorri was always involved in the group, posting, responding, leaving a kind word or a helpful comment. But in recent months, she was not hugely vocal. Her ALS moved quickly, and typing became really hard for her. Every so often she would check in, and it was always a relief to hear from her, and to know she was still there. One of Lorri’s last posts in our group was a piece of advice to a recently diagnosed mom. She made that effort, so difficult for her, in order to let someone else know they were not alone. Read More>

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

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