For Those to Whom This Matters

After three weeks of more meds and hoping this hiccup did not count as ¨unstable,¨ I received some good news at the retinologist on Friday. Hgh doses of steroids, whether focused or systemic, have some unpleasant side effects. Ophthalmic steroids can increase eye pressure a lot … and quickly. This time it did not. Steroids... Continue Reading →

Humira Again

Last week began with a call from Walgreens Alliance Pharmacy, asking if I needed to arrange for another month’s supply of Humira. “Yes,” I said. “That would be great.” We went through timing, delivery, the regular questions, and then she mentioned the $1200 co-pay. “Were you expecting that?” she asked. “Um, no.” The conversation deteriorated... Continue Reading →

And So I Persist

I live by the words, “What doesn’t kill you gives you a set of unhealthy coping mechanisms and a dark sense of humor.” They help me face Parkinson’s and life with a combination of cheer, sarcasm, and darkness. And a dose of refusal. I refuse to let this insidious, sneaky, passive aggressive  coward of a... Continue Reading →

Showcase Weekend

On Monday, after an intense ballroom dance coaching session, I spent a couple of hours watching, ok, crying through a Netflix movie called Dumplin’. Set in Texas, chock full of Dolly Parton aphorisms, it’s a little gem of a tear jerker. Plus, if you watch it as I did, and if you’re the mimic that... Continue Reading →

Get A Move On

I get tired of the platitudes. “I am bigger than Parkinson’s.” “If your dreams don’t scare you, they’re not big enough.” “If life gives you lemons, make lemonade.” Because there are times when Parkinson’s is bigger than I am, when life is scarier than dreams, when I’m surrounded by lemons but not vodka or sugar.... Continue Reading →


I met the most amazing group of warriors yesterday.  I fall asleep with difficulty, wake at the drop of a hat, and spend most of every night awake. Night before last was no exception. I woke up at 3:00 and lay in bed - awake - until 5:00. Something compelled me to leave the pocket... Continue Reading →

Be Your Own Tiara

By Jane Miller My life is turning out neither the way I planned it, nor dreamed it. I dreamed of happy. Of belonging. Of place. Of love everlasting. Of a tiara. I have always wanted a tiara. A sparkly symbol of something … I don’t know. Acceptance? Esteem? Beauty? Altruism? One year, as we were... Continue Reading →

Happy Anniversary

by Jane Miller Let me not to the marriage of true minds Admit impediments. Love is not love Which alters when it alteration finds, Or bends with the remover to remove. O no! It is an ever-fixed mark That looks on tempests and is never shaken; It is the star to every wand’ring bark, Whose... Continue Reading →

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