Tag Archives: Copyright: Mary Radnofsky and Dementia Alliance International 2016

One. It Can Be Everything, by Mary L. Radnofsky, Ph.D.

Screen Shot 2016-08-16 at 10.30.22 AMMany of you have met Mary Radnofsky, either online in one of our weekly support groups, on Facebook, or at a conference. You may have seen her presentation from Budapest on our blog as well, and if you haven’t watched that, we do highly recommend it.

We are thrilled she recently accepted a position as a co-opted member of our Board, and has also agreed to be more active DAI member by writing blogs, and being DAI’s Editor. Thank you Mary, from all of your new DAI colleagues, family and friends.

One. It Can Be Everything.

by Mary L. Radnofsky, Ph.D.

Second only to my confirmed diagnosis of dementia, I’d say my current transitional period is the most difficult stage of my life: I’m still part of a past with people who knew the Old Me, and I have a foot in the emerging present, as the New Me, but it is difficult to fit well in either world.

Lately, I’ve been managing bits and pieces of too many tasks without actually enjoying any of them. So last week, I stopped everything, closed my eyes, and envisioned doing just one thing all day. I’d let go of everything else (including my phone). I don’t know how often we allow ourselves to do just one big thing at a time anymore, but the idea appealed to me.

Then an opportunity arose: I was offered a paid, improvisational acting gig for three days at the local university law school, to role-play a witness in a court case. I’d created scenarios in the past to train teachers, so I was sure I could do this. I studied my complex character, and figured out arguments for her case.

My first day at the law school, I attended lectures and studied my part. I created twists and turns in my testimony for the students to solve. This was like teaching; I felt like the Old Me – (well, maybe not the pre-dementia superwoman who had a career, relationship, home, friends, travel, and fun), but at least the Me who was happy immersed in a single, worthy project.

Over the next two days, I had a new commute, but simplified it with Uber, to keep out the distractions of bus, metro, traffic, noise, heat, crowds – the minutiae of life – that can gnaw at what you love. Acting demanded all my focus. I studied, I learned.

The experience reminded me of my student days, when I’d put off projects until the last minute, so I had to focus on just the one until I finished. It was great. And I believed I’d pulled it off again, that I still had “it,” a gift for words, a quick wit (or at least the ability to fool people).

On the day, though, one rather lawyer in charge publicly criticized me. I defended my portrayal of a tough, working class woman to show the students a different kind of client. I gave examples of how they could have convinced me to give the information they needed. But at break, the lawyer hijacked my students, kept them from working with me, and ignored my very presence. At lunch, I confronted the lawyer, who condescendingly dismissed all I said.

Though my interpretation of the role (and situation) was far from perfect, and whether I was wrong or the lawyer was a jerk, I realized I didn’t fit in. I didn’t like the way that felt. And I’d been publicly disgraced. I didn’t like that either. Maybe it was because of my perceived lower social status (I was an actor, he a lawyer), that he saw fit to treat me like dirt. But I was still me the professor inside, and I didn’t like being treated that way. My only comfort was the thought he probably treats waiters and cleaning ladies with the same disdain.

But it still hurt. I’d thought I still had “it.” I wanted it to be true. This had all the trappings of middle-class life, job security, civility – the kind of social and financial security I’d known for decades (now gone from my life as I have no job or health insurance, retirement, savings, or family, though thankfully still a few friends). But I probably wasn’t picking up on nuances and context clues.

I can’t pass anymore as the Old Me. That’s clear. So today I stop trying. Today, I start to enjoy the New Me. I can still learn, teach, risk, love, fail and try. And as I evolve with my dementia, I’ll surely do things differently. I’ll just have to figure out my new role in society. I still have the right to enjoy Life, and I still want make a difference.

I’m still part of society, even with my new feelings and interpretations of reality. I believe that means it must also evolve with me and others like me. An evolving society must accept people with changing abilities and limitations. An evolving society must be willing to organizationally re-invent all that is necessary to ensure that society serves the needs of people, not the other way around.

I believe we can help society understand its changing responsibilities, and let go of its outdated beliefs. Society is made up of us all – including those of us with dementia. It’s time to redefine our roles within society, and to determine the kind of society in which we all want to live. e pluribus unum*

* “e pluribus unum” – Latin, appearing on US coins, meaning, “Out of many, one.” Believed to come from Heraclitus, “The one is made up of all things, and all things issue from the one.”

 

 

The Well-Educated Lab Rat: Clinical Research from Inside the Maze

Screen Shot 2016-08-13 at 8.24.56 AMMary L. Radnofsky, PhD, retired Professor and Board member of Dementia Alliance International (DAI) gave a brilliant keynote presentation in Budapest at the ADI2016 conference.  You can read the abstract, download her slides and view her presentation in this weeks blog. Thank you Mary for representing us so well, and for your permission to share it.

The Well-Educated Lab Rat:  Clinical Research from Inside the Maze

“As a former research professor and ethnographer, I know about quantitative and qualitative data-gathering instruments; I’ve done fieldwork in educational cultures with children, and watched these “rats” in their classroom “mazes.” But my reason for becoming the lab rat myself, in medical research, was unrelated to my profession: I just needed to see a doctor because I was sick. With a white matter disease, no job, and no health insurance, I found a way to access the best physicians, medical tests, and cutting-edge technology in the country: volunteer for a clinical trial at the National Institutes of Health.

Two years later, I’m still a part-time lab rat. Sometimes it’s actually good healthcare, as I get the most concerned specialists focused on me. I also learn much from these top experts about my condition. But being a lab rat takes emotional and physical tolls; for example, I didn’t have the “target” disease in my first clinical trial, so I “lost” that year, in that I couldn’t get treated. I do have a rare disease, though, so I got many tests – some fascinating, some painful – both on my mind and body. And I caught a hospital-borne virus that nearly killed me. That was a heavy toll, but I recovered, so I volunteered for another study. I still believe in the power of science.

I was enrolled for genome mapping, and had exciting results – though inconclusive, so I’m still waiting to “fit in” to another study for follow-up, and another year has passed. I’ll go back into the cage with the other lab rats, busy on a roller coaster of tests, expectations, procedures, paperwork, schedules, bureaucratic mazes, interviews, delays, confusion – oh, and by the way, we’re sick!

But we’re still important, funny, loved, needed, wanted, and occasionally, very well-educated lab rats. And we’ve got something to say about the ways you study us.”

By Mary L. Radnofsky, PhD

You can download her slides here: The Well-Educated Lab Rat_Mary Radnofsky PhD_ADIBudapest2016 and watch her speech below.

https://youtu.be/HPHHszU-o5I