An App for That?

This wide and wonderful planet is not as handicapped accessible as it could be. Which leads to all sorts of conundrums for travelers who are in wheelchairs, or on crutches, or who just have to pee—now.

Is there an app for locating free, clean, accessible bathrooms? I want one. Until that day, I will simply follow the Golden Arches.  Gas station restrooms can be dicey. Highway rest areas are, in my mind, the pinnacle of civilization, but are prone to closure during state budget cuts. Which bring me back to McDonald’s. Again, and again, and again. Specials shout outs to the McDonald’s by the Arc de Triomphe and the McDonald’s in Waimea. Home is where they have to let you in.

I have another request of the App Gods. I want an interactive, updatable app to alert travelers with disabilities of situations like this:

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I was shocked, as was the lady in the photo above, to see that the elevator was out at the Metro Station at the NIH (National Institutes of Health), of all places. We’d been lulled into the feeling that we’d reached Oz and all of our problems were about to be solved. And now this. While believe I pointed the young woman in the direction of a working elevator, that could have been wishful thinking. The sun had just burst out from under a cloud, raising my body temperature, frying my neurological wires. So I was distracted. I had to pee. But in my distraction, I did wonder: why couldn’t Google Maps have a little alert that the elevator was out, saving this lady the effort it took to get here…and a little flag indicating the location of the next closest elevator? And that’s when my app idea was conceived. It’s still not fully formed.

Is this app a layer on existing apps that a disabled user can opt into?

Or is this a separate app? I know I love to read blogs about other people’s (mis)adventures traveling with MS, like the Xanax tinged travails of MSGracefulNot.   Wouldn’t it be nice if all the testimonials were in one place? That’s what the fine blog The MS Wire has attempted to do. Ed Tobias has compiled travel tips from his years of adventures, and has invited his readers to do the same. He’s started with some practical tips about traveling New York, with the hope of adding more cities in the future. It would be great to have folks check in from Ontario and Topeka or their own home town, with their praises of well tended sidewalks and/or their condemnations of doors within hospitals that can’t be opened without buttons. (Major pet peeve!) It would be great, on entering a new city, to have the dirt on the dirty bathrooms (I know, I know, I’m obsessed with bathrooms) and broken elevators from people who get it. It would be great to have travel anxieties dispelled by the knowledge that our peers have our backs.

Thank you for reading!

If you haven’t already, consider voting for my blog at the WEGOHealthAwards.

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A Day in the Life at the NIH Triali

Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.

My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.

It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.

Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.

After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working  on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance

Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.

Next came  the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.

Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.

Thanks for reading!IMG_0049

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A Pat on the Back from Ms Lab Rat

On June 23, I finally realized I shouldn’t reduce my blog to being just about me as a person with MS. I’ve got a lot more going on than a chronic disease. When I’m not telling my own stories, I’m working to help others tell their stories. And often enough, my students have successes that ought to be shared. I vowed on this post,  ” From now on, when one of my students deserve a pat on the back, I’m going to go ahead and pat.”

Guess what?

A long time member of  The Clifton Writer’s Workshop, a group I facilitate, just had a fine editorial published in The Cincinnati Enquirer.

I do hope you follow this link and read Andrea Rotterman’s nuanced piece about a her dual roles as gun owner and gun violence survivor. She labored over this essay, because she wanted to get the details right. All too often, the press presents gun ownership as an issue that is black and white. I love that her editorial ends with questions, not answers.

Does a link to an editorial on gun violence belong on a blog about multiple sclerosis? Gun violence is a more pervasive health problem in this country than multiple sclerosis. There’s only about 10,000 new MS cases diagnosed a year. The CDC published data showing 38,658 gun deaths for 2016, including suicides. It seems to me it should be easier to eradicate gun deaths than it’s been to eradicate MS.  But as Andrea’s editorial shows, nothing is as easy as it looks.

I’m so proud of Andrea for joining in our national conversation. It takes a lot of guts!Head Shot

If you like what I do, please endorse me on the WEGOHealth page to amplify my voice and the voices of the chronically ill.  Thanks for reading!