Today is Christmas eve eve, Tuesday. On Sunday morning I spoke to the members of the Ni River Community Church; the topic was "live each day as if it was your last." I said to them what I say to everyone about how I want to do my best to live my best, focus on what I can do, not what I can't, and how I will focus on today instead of worrying about tomorrow. It was well received and, I think, successful.
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My dear friend -- the one who was hurting -- is recovering. After thoughtful introspection she realized the value of the relationship, and told me that she felt she had to reconnect because the thought of losing her friend was too painful. She broke my heart when she told me how painful it would be when she loses me -- and she won't be able to get me back. I understand her motives, I just hope this reconciliation doesn't result in fresh pain.
This conversation took place after an exhilarating night time run. We met at 7 PM and ran through a residential neighborhood. The Christmas lights ran the gamut and we were not disappointed to see the one house on the corner made up as it always is with those awful blow up figurines -- they must have 25 of them! Anyway, I haven't run at night in a long time, and I have always loved dark runs. It requires heightened senses, so you are distracted from the fatigue. And the air--it was crisp and cold and delicious.
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Earlier this week there was a PLM forum topic called "ALS and the fat guy." Lots of comments about "healthy" (translated "a little extra") weight possibly contributing to slower progression. One of the PALS posted this:
I went on a low glutamate, no red meat diet and quickly lost about 16 pounds to get to a "healthy" weight. My neuro told me to gain the weight back. He informed me that a study in France showed that PALS at least 10% over the recommended weight live longer. He explained that the body metabolises muscle after fat and that extra fat provides a safety buffer in ALS, because when we metabolise muscle, we can't grow it back.
Mouse studies have also shown ketogenic (high fat) diets result in longer life and slower progression in ALS and I have seen articles suggesting that high cholesterol is beneficial with ALS. (Whether the latter point is true or the high cholesterol is just a consequence of the ketogenic diet is unclear).
Now, I am no string bean and never have been. Since I've been diagnosed I've put on weight due to less exercise and possibly my meds. I'm generally okay about this but struggle: the benefits of the extra weight conflict with self image. We live in a society where thin is beautiful and not thin isn't. I know this sounds totally shallow but I hate that I am becoming--have become--this pudgy (and withered--there's irony) old cow. That said, I'm two years into this fucking disease and still have minimal progression. The PALS who wrote the comment above is also arm onset, a year into it, and is already much further along. Again I wonder, why is my progression slower? Is it at all related to my cowiness? And if there is even the slightest chance that it IS, can I be comfortable with my cowiness? Aaaarrrggghhhh!
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Christmas snuck up on me. The house MIGHT be ready, but the rest I am just trusting to chance. I've not wrapped gift one, and don't plan to.
The Serenity Room is starting to take shape. The carpet is in, the baby faux wood stove is out of the box, and the iPod docking station is set up (and is totally fabulous!). It's a beginning.
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Enough rambling. Go read something less ridiculous.
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