Invention would help those living with Parkinson’s write again – Part I

Dear Dr. Lozano…I wanted to contact a professor of engineering at UTRGV, and when I read about your prestigious NSF grant and your Engineer of the Year award, I knew you were the one!!! (CONGRATULATIONS!!!)…I grew up in Peoria, Illinois, and most of my family still lives here, including my mom (Sue Ardis). She is, without a doubt, the strongest woman I know, despite what she is going through, living with Parkinson’s…

It’s hard to believe that 11 years have passed since doctors diagnosed my mom with Parkinson’s. It seems like forever ago, so I asked her a few days ago how she found out.

“I had a twitch in my thumb,” my mom told me. “Then I ran into a friend of mine who had just been diagnosed with Parkinson’s that day. I asked what the symptoms were, and he said it started with a twitch in his thumb.” She decided it was time to see a doctor.

“They don’t have a test to diagnose it,” my mom told me. “They do tests to rule out other neurological issues, and if it isn’t those, you have Parkinson’s.”

I found this strange, assuming now, 11 years later, there must be a test. I looked on the Mayo Clinic site, and was shocked and saddened to read, “No specific test exists to diagnose Parkinson's disease. Your doctor trained in nervous system conditions (neurologist) will diagnose Parkinson's disease based on your medical history, a review of your signs and symptoms, and a neurological and physical examination…Imaging tests — such as MRI, ultrasound of the brain, SPECT and PET scans — may also be used to help rule out other disorders. Imaging tests aren't particularly helpful for diagnosing Parkinson's disease.”

Over the years, there have been physical changes in my mom, but most have been relatively subtle. Her sister, Janet, noticed she stopped swinging her arms when they went walking. A couple of years ago, her feet tended to ‘shuffle’ rather than walk, and she and I talked about how we take walking for granted and how she needed to mentally tell herself to pick her feet up as she walked. She did, and she kept on walking.

…I am seeing, first-hand, what she and so many others with Parkinson’s and other neurological disorders have to face each day. She has recently had to give up driving, which is difficult for anyone, but especially for a person who lives alone and is fiercely independent. Nevertheless, she has handled it with grace…

Last year, my mom decided she needed to quit driving. She had noticed a definite change in her balance and realized Parkinson’s was affecting her driving, as well. I cried. So did she.

It has been difficult for her to rely on others to take her places, accustomed to just jumping in the car and flitting around town, visiting friends in nursing homes, attending family events, going grocery shopping, and doing whatever else she planned for the day.

“That’s life,” my mom told me, “and it won’t do me any good to sit around feeling sorry for myself.”

…But what I think has been the most difficult thing for her is the gradual loss of the ability to write clearly. She is a woman who loves to write notes and cards to people and who wants to be able to write checks each month to pay her bills…

Last summer, when I went to Illinois to spend time with my family, I fully understood my mom’s frustration over the change in her handwriting. Due to Parkinson’s, my mom’s handwriting is much smaller, and she must focus intently to write a legible note. Even then, it isn’t easy or natural any more.

Determined to find a way for her to be able to write again, I researched to find a product made specifically for those living with Parkinson’s. When that turned up nothing, I turned to college professors in the field of mechanical engineering. It didn’t take long for me to find one teaching right here at the University of Texas-Rio Grande Valley who received a National Science Foundation award for $3 million and who is recognized for her work in nanofiber technology. Her name is Dr. Karen Lozano.

June 11 of last year, I sent Dr. Lozano an email, excerpts from that letter appearing throughout this story. I asked, in my email, if she and her students would consider developing products that would enable my mom, and others like her, to write freely and clearly again. Not that mechanical engineers would need my help, but I offered ideas for two products I envisioned.

“Thank you so very much, Dr. Lozano, for taking the time to read this email. I…would be honored to talk to you, to your students, and to whomever else you think I need to for these devices to be a reality.

Respectfully, Chris Ardis

I pressed “Send” and felt an overwhelming sense of hope. Unbelievably, 18 minutes later, I received a response from Dr. Lozano:

Chris, very interesting email. I agree with you; many times we don’t realize what is needed until we experience, first hand, situations like the ones your mom is living. Let me think for a bit and will find a way to help…

Best regards, Karen L.

I didn’t tell my mom I was sending a letter to Dr. Lozano, but when I received her response, I had to tell her. Even if a solution couldn’t be found for her during her lifetime, she said, wouldn’t it be amazing if it would help others living with Parkinson’s.

September 14, I received another email from Dr. Lozano:

Chris, good news. Just assigned the project to a group of students, and we have already been discussing the technology and designs needed. I will keep you posted.

Best regards, KL

Tears of joy, a renewed sense of hope, and a phone call to my mom to fill her in followed.

Then in March, Dr. Lozano contacted me by email again to let me know her students’ final presentation was scheduled for early May. She wrote that it would be nice if my mom could attend. I responded, letting her know my mom wouldn’t be able to come down from Illinois (though I certainly wished she could). I did ask Dr. Lozano, though, if she and her students would give me permission to write a story for the Valley Town Crier about the presentation. Dr. Lozano responded the next day:

Chris, sounds great!! I spoke to our administrators here, and that will be OK. I will let you know late next week about the schedule…

Soon after, I received another email from Dr. Lozano with the date of the presentation, May 8. The end of the email reads, BTW, yesterday they competed in a business competition, a type of shark tank, and won 2nd place!!!!

I could hardly contain my excitement at this point. I decided to send Dr. Lozano and her students a picture of my mom. I felt it was important for them to see the face of just one of the estimated one million people in the U.S. affected by Parkinson’s. I also sent them three samples of my mom’s writing, one from 2002, one from 2016, and one from 2017 so they could see the change.

And then, the day arrived, the day I would finally meet the students who accepted the challenge, Tremor Cancellation Team members Rodolfo Becerra, Carlos Hernandez, Misael Martinez, and Arnoldo Ventura.

Next Wednesday in Part II, read about the Tremor Cancellation Team, their Senior Design Team Presentation, and the product they developed for my mom and others living with Parkinson’s.