Radio

Radio / Library of Congress

Radio / Library of Congress

I’m on the radio! On the National Public Radio show “Here and Now.” They wanted me to talk about being a StrokeMama. Also what it’s like when your mind disappears. Listen here

Park

Park / Wellcome Images

Park / Wellcome Images

My son’s favorite nearby park is the Dragon Park. That is his name for it. It is hilly, sandy, not level and filled with park equipment that a StrokeMama can’t climb to rescue her 2-year-old when he gets stuck.

My son’s second favorite park he calls the Truck Park. It is flat, smaller and filled with toy vehicles.

He is often mad that we are not going to the Dragon Park. Truck Park compromise.

Other stroke compromises?

Music

Alabama / Library of Congress

Alabama / Library of Congress

My 2-year-old son enjoys his musical instruments – a ukulele, a harmonica, a triangle, a xylophone. (We have avoided buying a drum.) He likes belting out bluegrass tunes on his ukulele. Sometimes he hands it to me, whose right hand can play but not with his gusto. Then he looks annoyed.

Have you had moments when your kids notice your disability?

Librarian

Library / Library of Congress

Library / Library of Congress

A librarian wrote in with a speech therapy question: he has a patron who has pretty strong aphasia, or loss of language. The patron likes movies, so the library staff try to help him select them.

“Do you know is there a list of vocabulary that staff can use to aid him? For example, he will say ‘world, 1, 2, 3, 4, you know, come on! Me!’ We try to clarify by asking, ‘scifi? Documentary? Series? South America?’ Many times he gets frustrated and leaves. And help that you can offer or resources that you can point me to would be very appreciated.”

When I had aphasia, I often wrote things down. I don’t know if that is an option for this library patron. Maybe some crowd sourcing here? Any patients or speech therapists with helpful ideas?

Bullhorn

Evelyn / New York Public Library

Evelyn / New York Public Library


Harvard Medical School asked me to speak on the first day of their Neurology course. My hope is that the students take away: be encouraging to stroke patients! We can continue to get better for years! I have had run-ins with therapists and doctors who have not been encouraging. I’m busy proving them wrong.

Got stories to tell?

Fleas

Lips / Library of Congress

Lips / Library of Congress

Aphasia is an impairment of language and communication. June is National Aphasia Awareness Month.

I said odd words after my stroke. For example, I wanted to say “speech” and instead said “fleas.”

If the words coming out of your mouth are not what you intend, who’s talking?

Disabled Style

Disabled Style / Library of Congress

Disabled Style / Library of Congress

Students at the Parsons School of Design in NY have a course in fashion for the disabled. It is in conjunction with MIT’s Open Style Lab.

Praising smart design, baby. Me, I can’t stand stuck zippers. Any other ideas for improving fashion for the disabled?

Boogie

Boogie / Library of Congress

Boogie / Library of Congress

My two-year-old likes bluegrass, big band and David Bowie. Get down! I do some of my boring exercises during our dance parties.

Any other techniques to keep motivated?

 

Insurance Dance

Can Can / Library of Congress

Can Can / Library of Congress

My therapists want to see me, but they have to justify it to my health insurance. Which leads to the Insurance Dance. My hand can’t be just getting better, but it has to be more functional to get therapists reimbursed. We are currently working on ways my hand needs to be more functional around my son: Putting on stuck, annoying zippers, grabbing his hand when he decides to flee, etc.

Any crazy Insurance Dance stories?

Cosmo

Cosmopolitan Magazine

Cosmopolitan Magazine

I’m in Cosmo Magazine! The editor asked for a StrokeMama story. Here it is….

Perhaps you can relate?