Deb Hockenberry

This month our featured participant is Deb Hockenberry from Altoona, PA. For 30 years, Deb’s doctors had diagnosed her with Multiple Sclerosis (MS), however, after not having many answers they found out that is was a misdiagnosis for Spinocerebella Ataxia (SCA). Spinocerebella is a slowly progressive incoordination of gait and is often associated with poor coordination of hands, speech, and eye movements. SCA is often confused with MS but is even more uncommon and is yet to have a cure. The biggest struggle Deb faces is the judgement of others. To most, her diagnosis is invisible, she looks healthy and can do many things on her own, however, behind her smile and strength is the pain that she feels daily due to her condition.

Getting the chance to talk with Deb, you quickly see her determination and edge. In fact, she recently released her first-ever children’s book, “Where Can We Have the Party?” The topic of her book was something that she has thought about for years, she would read books as a child and wonder why there were not many about talking animals going to a party. So, she decided she would write the book herself. Once she began, she learned that it was not as simple as she thought. You must learn the correct grammar and punctuation that is used to write children’s books. She took classes online and reached out to publishers and businesses to get her book published and sold. The book is illustrated by her friend, Emily Dimov-Gottshall, with watercolor paint. Deb even designed the layout of the book on her own using an online site and the illustrations from Emily. Finally, after years of putting in hard work and waiting, she is now a children’s book author.

On May 12th, 2018, Deb will be presenting and selling her book at the first-ever Altoona Book Festival. During this event, a dance group will choreograph the reading of her book. If you’re in the area and available that day, be sure to stop by the Altoona Library to meet and talk to Deb to learn about her love for Harry Potter and her cat, Harry (yes, after the Potter).

A piece of advice Deb would like to share to our readers is to “Never give up. If there’s something you want to do, you’ll do it.” There’s no limit when you have your heart set on something. Disabled or not, chase after your dreams and never give up. Deb is an intelligent and loving woman, she sought after her dreams and accomplished them. You can too. As her Service Coordination Agency, we are so thrilled at the achievements that she’s reached so far and are excited to see what the future has in store for her.
If you would like to order a copy of “Where Can We Have the Party?” you can find it on Amazon.com. You can also visit her Facebook page at www.facebook.com/AuthorDebHockenberry to learn more about Deb and find out where her next appearances are and information about her future books!

Matthew Dickun is a 28 year-old, self-taught artist from Mount Washington, PA. Matthew lives with duchenne muscular dystrophy, but in no way does he allow it to define him.

Dickun graduated from Pittsburgh Technical College (PTC) with an Associates Degree in Science for Computer Aided Drafting in 2011. His education taught him how to use 3D software for designing mechanical parts. This gave him a solid base from which to learn 3D modeling in a more artistic way.

Matthew also enjoys creating artwork with colored-pencils, markers, and graphite pencil. He focuses on drawing subjects from science fiction and fantasy genres and had dabbled in other various traditional are genres.

After graduating from PTC he had an internship with Siemens where he learned that a desk job just wasn’t for him and decided not to go back after the internship ended. Art was something that he has done and enjoyed since he was young and he decided he wanted to make a career of it and began a website on ArtBalanced.com to showcase and sell his work.

You can find one of his featured art pieces here or go to his website at www.artbalanced.com/matthew-dickuns-gallery/ to see more of his work and even make a purchase to support his career in art.

We would like to introduce you to our very own, Mary T. Boxler. Mary is a Johnstown native and a participant of Alleghenies United Cerebral Palsy since 1981. Born with Cerebral Palsy, the doctors predicted that she would not live to be 11 years old. Today she is 64 years old and living independently in her own home with assistance from her aides, and manages all her necessities including doctor appointments and bills.

Mary T. walked on her own with the assistance of crutches until she was in her 50’s and today gets around quite easily in her wheelchair. There has been a long-standing joke in her family that one time her
father placed a $20 bill on the floor about 20-25 feet in front of her and said, “If you can walk to it, it’s yours.” Sure enough, Mary T. triumphantly walked to that $20 bill and does so every Christmas when her family reenacts that moment. Mary says that she would not have been able to get this far without the love and support of her parents and the organizations that have supported her since day one. Among her biggest achievement of living independently, she was also named Easter seal Girl in 1965 and ’66, attended Hiram G. Andrews for clerical training where she lived on her own for the first time, and even got the chance to visit Mount Rushmore in South Dakota.

If you were to meet Mary T. you would see her courage and compassion shine through her. In a letter from a close friend and family member, Mary T. was described as, “a marvelous person with such a terrific attitude about everything and everyone.” She has not let her disability hinder her to accomplish so many things in life and it is truly inspiring. We are so fortunate to get to know Mary T. as a participant and a loving friend of AUCP.

One thing is for sure, we never truly know what tomorrow holds. For UCP participant and Windber, PA native, Barbara Zablotney, one icy night changed her life forever. On December 30th, 2008 at the young age of 21, Barb was in a car accident which left her with a spinal cord injury causing her to be paralyzed from the waist down. Just five weeks from graduating from Johnson College in Scranton, PA to be a veterinary technician, Barb could not have been prepared for what the future would hold for her. The accident was followed by losing her mother and separating from her long-time fiancé leading her into years of depression and weight gain. The paralysis also leaves her without the ability to control her bowel or bladder. Barb reached out to her doctor to investigate receiving surgery to manage her bowel and bladder functions, she was told that she was too big. Something switched in her at that moment, she wanted to live a better life, a life that she wanted to live.

Today, Barb is down more than 100 pounds thanks to eating healthier and working with her personal trainer, exercise physiologist Mark Rhodes and Healthstyles Wellness Center in Windber. On March 3rd, Barb will be competing in Ms. Wheelchair Pennsylvania where she will present her platform about the ignorance she faces daily due to her disability. Barb is able to drive, live independently, and go out on her own, and it frustrates her that people think that she automatically needs their help. Good intentions or not, Barb says it’d be better if people would just wait until she asks for help rather than assuming she needs it.

“I want people to look at me how they would anyone else. I want them to see me like they did before.”

If Barb wins Ms. Wheelchair Pennsylvania she will move onto the Ms. Wheelchair America pageant in August. The winner will then make public appearances twice a month to advocate for disability awareness. Barb believes that with the title as Ms. Wheelchair, she will be able to continue to get the word out there about the ignorance people have regarding disabilities. “It’s a visible, invisible disability” and she wants to continue to educate on the rights of disabled persons.  For the future, Barb plans to continue to visit schools to educate on destructive decisions and disabilities, record her workout sessions and post them on YouTube for other disabled persons, undergo the surgery to manage her bowel and bladder functions, and be able to go back to work.

“There’s a beginning to it all, you just need to start,” Barb stated. Alleghenies United Cerebral Palsy is inspired by Barb and her efforts to advocate for disabilities and we proudly stand behind her as her service coordination agency.  If you would like to learn more about Barb and follow her journey through the Ms. Wheelchair pageant you can follow her Instagram (@therollingrainbow) and Snapchat (@rollinh_rainbow) and look up her workout videos on YouTube by searching the users “Rolling Rainbow Barb.”

We are so excited to introduce you to our very own, Erin Kelly, 32, of Altoona, PA. The following is her bio for your reading pleasure.  Erin M. Kelly’s path to becoming a writer began with a simple box of crayons she had as a child. Her mind went on autopilot as her hand drew brilliant streaks of blue, red, and every other color of a rainbow.

She utilized her creativity as a way to not only learn to live with her diagnosis of cerebral palsy but to understand it. Most of all, she wanted to be seen, heard, and understood. Erin’s willingness to learn about the craft of writing and editing has led to her chosen career. She is a now writer, journalist, columnist, freelance editor. and poet who enjoys writing in all genres. She wants to be recognized for her work rather than her disability. Her work has been published by The Huffington Post, Upworthy, The Mighty, The Good Men Project, Wordgathering Poetry Journal, XoJane, and Oberon Poetry Magazine. Erin also writes a monthly column entitled, “The View from Here,” for the local newspaper in Altoona, Pennsylvania, addressing the challenges she faces daily. She served as Editor for the memoir, To Cope and To Prevail, by Dr. Ilse-Rose Warg. Writing is her window to the world giving her the opportunity to bring what’s inside out.

Through her twenty-year journey, Erin has learned the importance of responsibility and kindness. Her writing has provided a platform for her to educate and entertain readers with a mindful purpose: to let others know that disability, in general, is not something to be feared, but rather, embraced. More importantly, Erin writes to spread her message that she wants to be treated the same as everyone she meets. She does it all knowing that writing, and the uniquely hectic life that comes with it, is a conscious choice. She’s forever grateful for everyone who chose to come along for the ride!”

Erin has recently announced that her first book, titled “How to Wait,” a collection of poems about life from Kelly’s point of view. The book is now available for pre-order until March 9th. You can place your order today by visiting www.finishlinepress.com. Erin is being recognized for the positive impact her writing has had on the community and will be the 2018 recipient of the WISE Women of Blair County Award in the category of Arts and Letters. It is so inspiring to see how Erin continues to pursue her passions despite the barriers that she faces. We are so honored to be her service coordination agency and are proud to provide her the services that help her to live independently.