primary progressive aphasia walk

Teenager Raises Thousands for Primary Progressive Aphasia Research

When Jessica Shapiro thinks about her great-uncle Bobby, she doesn’t focus on his Primary Progressive Aphasia (PPA), which robbed him of his ability to communicate. She thinks about his boat.

“He loved his boat. He would take me out on the water and would teach me how to drive the boat. One piece of advice I remember he gave to me is to be patient when turning a boat. It takes a while to turn the boat if you don’t want to overturn it.”

primary progressive aphasia walk

Like a carefully turned boat, she is now slowly changing the way the world thinks about PPA and aphasia by organizing an awareness walk for her Bat Mitzvah project in honour of her great-uncle, her grandmother’s brother Robert J. Plumer. While Jessica’s favourite memories center on the boat, her grandmother, Joy, remembers her brother’s brilliant brain.

He was a pioneer in the space program, developing and implementing simulation systems for the first astronauts back in the 1960’s. Later, he developed simulations for tanks used in the Iraq War and in Israel. He knew how to talk to everyone and teach them in simple terms that anyone could understand. Everyone on his team adored him.

Unfortunately, when he turned 70 years old, something happened to his brain. Being the genius he was, he was able to hide it for several years. As time went on, we knew something was not right because he couldn’t express his words. They came out all jumbled. People didn’t understand him, but I knew what he was trying to say because I knew him so well. It took many doctors before he was diagnosed with Primary Progressive Aphasia. Unfortunately, he didn’t get the proper evaluation earlier to help him. He died in 2015, a few months before he would have turned 79 years old.

Jessica’s walk is to raise awareness for PPA. “This disease is not well known, and there is no cure. I want to raise money so a cure can be developed and not as many people will die from this disease. I’m getting people to join my walk by sending out emails to my friends and family. Also, I am asking my friends if they can come. I created flyers, and I handed them out. I hung up the flyers in my school.”

primary progressive aphasia

The patience and hard work she learned on the boat, spending time with her uncle Bobby, is carrying forward into this project, guiding her as she tries to shift the way society thinks about this disease. She says,

I feel good knowing that I am making a difference for Primary Progressive Aphasia. I know that not a lot of people know about this disease and it is a difficult disease to have. It is hard to communicate with other people when you have this disease. By raising awareness and money, a cure might be found and people with the disease can have an easier time communicating with people. They won’t have to live with the disease anymore.

If you are in the New Rochelle, NY area on May 7th, please come to the Robert J Plumer 5K Walk. Even if you’re not in the area, you can participate from afar by making a donation to support her project.

Image: Logan Ingalls via Flickr via Creative Commons license

Comments

5 Comments

  • Leesa Braun
    April 11, 2017 at 11:18 am

    You Rock JESSICA!! I’m sharing your story and will be sending a donation! My mom was diagnosed with PPA about a year ago. ALSO too late to really help us all learn how to communicate and deal with this disease at it progresses. KNOWLEDGE IS POWER – GOD BLESS YOU!

  • Tori
    April 11, 2017 at 10:52 pm

    Thank you, thank you, thank you!!! Love that you are going through the efforts to spread awareness about PPA. My mom was diagnosed several years ago at a young age, people don’t understand the struggles we all go through with this disease. It’s about time we spread more awareness and raise for research! God bless you!

  • Anonymous
    May 23, 2017 at 8:39 am

    What an expression of the Jewish Concept of “Tikkun Olam”, Heal the World.
    Very good deed!

  • Barbara Waters
    May 23, 2017 at 9:09 am

    Thank you, Jessica. If this is not so good I have aphasia (not primary progressive aphasia) myself. I had someone I knew die a year ago of primary progressive aphasia. It seems to affect those that are so incredibly articulate and brilliant like your Uncle Bobby and my friend- or is it just recognized in them because it is such a change.
    God Bless You!

  • MIke
    August 29, 2017 at 12:12 pm

    Hi, Keep up the good work. I am in San Jose California and my wife was diagnosed with PPA 2 years ago.
    I was hoping to meet others with the disease or meet their support people. Seems difficult as there are not many people diagnosed.

    We did speech therapy but it seems it is more geared towards stroke vistims.

    I am hoping to figure out alternative means of communication.
    We are thinking of putting together picture books of daily tasks possibly with minimal narrative.

    Not to correct people, however, I am told you don’t die from the disease. You just lose your power to communicate. I am hoping we can train the mind to be positive despite the communication losses.

    Good luck to everyone.

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