Amazon

Girl in Arms / Library of Congress

Girl in Arms / Library of Congress

After my stroke, my words were wacked. I meant to say “occupation” and it came out “Amazon.”

Here are some more strange words I said.

Do you have strange mis-speaks to report?

Time II

Clock Lady / Wellcome Images

Clock Lady / Wellcome Images

I got a call from a fellow stroke victim, one who had her stroke recently. She wanted to know about Botox, which doctors sometimes inject into stroke limbs that aren’t behaving. I had had the treatment.

“What does it feel like?” she asked.

“Like an injection,” I said.

She sounded nervous.

“Look,” I said, “If your doctor does a bad job, it leaves your system in about three months.”

“Three months!” she said, astounded.

Suddenly I realized how different our concepts of time were. Stroke veterans think three months is a blink of an eye. Newbies don’t.

Has your concept of time shifted?

Other Time issues….

Read

Spectacles / Library of Congress

Spectacles / Library of Congress

A stroke can disrupt your reading, called alexia. The term was coined by neurologist Joseph Jules Dejerine in the late 19th century. He was introduced to patient “Monsieur C.” The patient was a wealthy, cultivated textile merchant, who had a stroke. Soon after, he discovered he could not read, although he could speak and write normally. Monsieur C. could even read music — not the lyrics, but the musical notation.

Read more brain history here.  Do any of you have alexia?

Concentration

Attention / Library of Congress

Attention / Library of Congress

Were any of you prescribed concentration drugs? I was on one for awhile: a “wakefulness” drug. One morning, I took my first dose. An hour later, I was, well, zippy.

This was a very odd feeling. It felt like someone else has taken over my being. Someone who was more efficient than I was and had no need for pauses. In the background was the beat of a giant drum in a marching band.

I don’t take these drugs anymore. It feels too artificial and strange. Plus, I concentrate better now.

Do you have concentration stories?

Wrote

Write / Library of Congress

Write / Library of Congress

I wrote my name with my stroke hand! I used a magic marker and wrote in big cursive letters, but it was legible. This is the first time I’ve written using my right hand since my stroke. Progress!

Any other progress stories?

Young

Springtime / Library of Congress

Springtime / Library of Congress

It is official: more and more stroke victims are younger. Here is an article from the Washington Post:

“Strokes, long on the decline among the elderly, are rising among younger adults….

Not a happy youth article.

Hand

Opening Sunday / Library of Congress

Opening Sunday / Library of Congress

My rehab hospital put me in a Constraint-Induced Movement Therapy (CIMT) program. For two weeks, I did four hours of hand therapy a day. At the end, my weaker hand was more dexterous, especially at picking up small objects. Thank you!

But, four hours a day for two weeks of hand therapy is deathly dull.

Opera

Carmen / Library of Congress

Carmen / Library of Congress

Here is a story of an opera singer at the Metropolitan Opera in New York City who had a stroke. He still has problems speaking now, but his singing has come back…different parts of the brain.

Do any of you have speaking/singing differences?

Listen

Headphones / Library of Congress

Headphones / Library of Congress

I was on a national radio show recently, on TheMoth, the cool US storytelling show. To listen to my story, TheMoth has just added a podcast.

You can listen to my individual story here as before. Or you can get a podcast from “The Moth Podcast,” dated May 6, entitled “Live from Boston.” I’m the last storyteller of the night.

Enjoy!

Triumph

Sword is Drawn / Library of Congress

Sword is Drawn / Library of Congress

A few years ago, I had a royal bureaucratic mess with Medicare over an expensive brace that they should have paid for. (Medicare is the US government’s health insurance plan for the disabled.) I called my Congressman, my Senator and filed appeal after appeal.

Recently I ended up on a phone call with a Medicare Administrative Judge from Ohio, who swore me in. It was court by phone! His verdict: Medicare would pay for the brace, but it would have to be made again, for obscure legal reasons. I had to mail back my old brace, which was in fine shape.  Then I had to go back to the hospital and get measured again. Then the company remade the brace.  This struck me as a waste of time and money, not to mention environmentally stupid.

I did win, though. Don’t mess with me on bureaucracy. I usually triumph.