Community Fund Success Story

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A few months ago we received a Community Fund application for one of our participants, Joyce Wilbur. Due to Joyce’s lymphedema and knee surgeries, she was having problems with swelling in her legs and was in need of a certain type of compression stockings. Unfortunately, her insurance was unable to pay for them and after reaching out to other community resources, she was still left without the stockings that she needed. That’s when her AUCP AmeriHealth service coordinator submitted an application on her behalf.

Upon reviewing Joyce’s unique situation and seeing that these compression socks were something that she needed for her health and safety, AUCP was able to provide a grant through their Community Fund to pay for the compression stockings. After receiving the stockings, Joyce was very pleased and so grateful. Compression stockings, although a seemingly small need, make a huge difference in her everyday life. She says that they have helped with the swelling of her legs and she is able to walk more with them on. This is great news for Joyce and now she is able to focus more on her everyday needs and health with her coordinator.

 

If you would like to learn more about AUCP’s Community Fund or would like to review the application process, click here.

Participant Highlight – Michael Kiel

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When he was just 19-years-old and a college sophomore, Michael Kiel just so happened to be at the wrong place at the wrong time. On a mid-April night in 1993, Michael was shot in the side of the neck outside of a convenience store, leaving him completely paralyzed from the neck down. This occurrence may have changed the entire trajectory of his life, but it did not change who he is at his core.

Michael has a Bachelor’s degree in Psychology and a Masters degree in Rehab Counseling. Today, he works as a Rehab Specialist for the University of Pittsburgh School of Health and Rehabilitation at the Hiram G. Andrews Center in Johnstown, PA. His job is to work with other individuals with disabilities that are attending vocational school and he assists the students in identifying life obstacles. In his free time, Mike enjoys playing chess with his nephews and being with his friends and family. He has come to realize that who he is with is always more important than what they are doing. 

Over the last 20-some years, Michael has had a lot of time to think about his perspective on life, find a special sense of humor, and share his story with those around him. As a way to cope with his injury, Mike began to write about his life events before, during, and after his spinal-cord injury. In August of this year, he released his first book, “Challenge the Moment”, which is available for purchase on Amazon and in-store at Classic Elements in downtown Johnstown. This book serves as a memoir full of stories of his life and is said to be “brutally honest and painfully descriptive,” and at the same time “relentlessly positive, funny, and charming.” Michael says it offers a broader perspective on life and encourages the readers to enjoy the journey along the way.

As an agency that works with people with all forms of disabilities, whether they are disabled since birth or due to some sort of tragedy, we have to agree with Mike that perspective is such an important attribute to how one goes throughout their life. When we asked Mike what piece of advice he would give to our readers, he responded in the following quote:

“There is more in us than we know. If we can be made to see it, perhaps, for the rest of our lives, we will be unwilling to settle for less.” 

– Kurt Hahn

Thanks for being willing to share your story, Michael – there’s so much to be learned from the stories you’ve allowed the world to experience through your words.

 

Follow Mike on Social Media:

Facebook | Twitter  | Instagram

Participant Highlight – Gregg Sheaffer

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Gregg's Promotions

Gregg Sheaffer is a 52 year-old from State College, PA. Gregg has been a participant on our Autism Waiver for about 9 years and this month we would like to introduce you to him.

If you are in State College around Penn State University, you might see Gregg walking around handing out flyers and coupons to the public. That’s because 8 years ago Gregg began his own company called “Gregg’s Promotions.” It all started because he enjoyed volunteering to hand out flyers, so he decided to make a job out of it. Today, he has a plethora of business clients that give him wonderful reviews and know him as being dependable and polite. Gregg’s favorite parts of his job are walking around the community and getting to see and talk to people. He receives a lot of support from his community, friends, and family.

If you’re interested in learning more about Gregg’s business or to contact him, you can visit his Facebook page.

Participant Highlight – Kenny Dyer

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Kenneth “Kenny” Dyer, a 53 year-old, father of three, from the South Hills of Pittsburgh lived his life without expecting to one day be diagnosed with Multiple Sclerosis (MS), “an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” However, you could ask ten different people living with MS about how it is affecting their lives and you would get ten different stories.

For Kenny, he went 5 to 6 years without any diagnosis just assuming that the symptoms he was having were as a result of stress and getting older. However, in 2016 he was diagnosed with an aggressive form of the disease. Within two years he was bound to a wheelchair, had to stop working, and relocated to Westmoreland, PA to live with his sister because he was unable to live independently.

Prior to his diagnosis, Kenny’s middle son, who was around 11 at the time, was diagnosed with cancer. Kenny remembers telling his son everyday “you are gonna get up, you are gonna fight, and you are going to win.” Kenny did not realize that one day he was going to have to practice what he preached. He decided he was not going to “curl up in a ball” and let the disease take control, he was going to continue making the best of his life. Even though he is inconvenienced by a wheelchair, he realizes that it could be much worse and that some people would give their lives to be in the position that he’s in.

One of the best compliments that he has ever received was from a friend saying, “the biggest difference between you (Kenny) and other people living with MS is that you are not giving up.” Each day, Kenny gets up and goes about his day, he gets to the gym three days a week, and does not allow himself to make excuses.

Currently, Kenny’s MS is stabilized with the help of medication and infusions.  His goal is to one day not need a wheelchair and begin using a walker or cane. He wants people to remember him as someone who doesn’t quit and is able to make people smile. When asked what advice he would give to the past Kenny, it would be to go to the doctor, so many things he faces today could have been prevented if he would have just followed the warning signs. Advice that he would offer to anyone recently diagnosed with MS is that “It’s not a death sentence. Yes, it’s a life sentence, but it’s not the end.”

Barb Zablotney of Windber, PA Update

In past newsletters we have introduced you to our participant, Barb Zablotney, that won the 2018 Ms. Wheelchair Pennsylvania title back in March.

This past July, Barb traveled to Grand Rapids, Michigan to compete in the Ms. Wheelchair America competition, competing against 25 other women in wheelchairs from all over the country.
Barb went home with 2019’s People’s Choice Award, in which her friends and community voted by raising funds leading up to the event. These funds went toward to the winning states program and to the Ms. Wheelchair America’s personal care attendant funds. She also set the record for the most money raised with the award.

Congratulations Barb, we are so proud of you! Your story and determination continue to inspire everyone around you!

Samuel McKoy-Johnson

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Source: FOX 43, Jossie Carbonare / June 1, 2018
Taking big steps and beating the odds.

18-year old Samuel Mckoy-Johnson suffers from Osteogenesis Imperfecta, also known as brittle bone disease, making his bones easy to break and confining him to a wheelchair. But this June — he did something remarkable.

Johnson was able to take steps across the stage to receive his high school diploma at Spring Grove Area High School in York County.

“I’ve been through a lot of stuff, a lot of operations, a lot of surgeries, but you know, through it all I made it, I’m here, and I get to walk across the stage,” said Samuel McKoy-Johnson.
From walking hallways — to standing minutes at a time to build his endurance— Johnson has spent the last year going to physical therapy— twice a week — to prepare for the big day. “I knew that’s what I wanted to do and I wasn’t going to let anything stop me,” added McKoy-Johnson. His therapist, Stacy Fisher says she’s seen a lot of grit and determination to get him where he is today.
“Seeing him right after school, seeing him on the good days after school, on the bad days after school and that he still pulls it out, does what he needs to do with therapy, even though he may not have had the best day,” said Fisher.

“It’s amazing to see the transformation from where we started to right after he had surgery to where we are now it’s just amazing and is a true testament to his good hard work,” added Fisher.
Giving the ultimate life-lesson to each person he crosses paths with: to keep fighting, pushing and never give up. “He always says mom, I am ok, I am not going to sit around and feel sorry for myself so I am very proud of him, very proud,” said Tasha McKoy, mother.
His next steps? He’s headed off to college at Harrisburg Area Community College “The same work ethic I put in to be able to walk across this stage is the same work ethic I’m going to put in throughout life,” added Johnson.

So to anyone facing a challenge:
“Where there is life there is hope, and if there is will, there is always a way,” said Johnson. “Don’t let anything stop you, always stay true to yourself, stay focused, have self confidence and you can accomplish anything,” he added.

Barb Smith of Hooversville, PA

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This month, we would like to introduce you to our participant Barbara Smith from Hooversville, PA. Barb lives with Cerebral Palsy and is one of the most talked about and loved participants around the Johnstown office. When Barb enters the room, you know it. With her silly jokes and enjoyable personality – you are sure to be laughing when she’s around.

When Barb is not cracking jokes, she is most likely playing her computer games, taking pictures, or dancing! It is also rumored that she is one to beat at Monopoly and is very creative with plastic canvas crafts.

Barb lives at home with her Mom, Dad, her older sister Mary, and 2 cats (Max and Crazy Tail.) She has another older sister, Lisa, that she enjoys visiting whenever possible. Barb enjoys going to the Truck Shows and being a part of the community around her. This year, Barb and her family decided to join AUCP for our Highmark Walk that was held downtown Johnstown. It was such an enjoyable time having Barb and her family join us, they made the day even better!

There are so many good things that can be said about Barb, she is truly an amazing individual. All of us here at Alleghenies United Cerebral Palsy are blessed to have her as one of our participants and more importantly, part of our family.

Michelle Gelles of Johnstown, PA

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Michelle Gelles of Johnstown, PA, is our featured participant this month and we are eager to share her story with you.

Growing up, Michelle had a normal life. She was surrounded by a loving and supporting family that never treated her any different and her Cerebral Palsy was not something that held her back from doing the things she wanted to do. Michelle was mainstreamed in school and it wasn’t until high school that she had started realizing how her disability made her different than others and the bullying began. To this day, Michelle is not bitter about the way she was treated, instead her perspective is that people just don’t know how to interact with people who are different, therefore, her and her friends tended to be the brunt of their mean comments and actions. Fortunately, Michelle had the support of her family and close friends to fall back on.

After high school, Michelle knew that she wanted to go to college. Even though Cerebral Palsy makes it difficult to do many day-to-day tasks, she decided to enroll in college at Edinboro University which meant living in a college dorm away from her family for the first time. This brought several trials and new experiences that made her realize she needed help that she was not able to get from the resources on campus. After some time, Michelle had decided that it would be best to move back home and attend a local college where she would be able to commute back and forth. Michelle graduated with her Bachelors in Secondary Education and a Minor in Communications holding a 4.0 GPA at the University of Pittsburgh at Johnstown. Just a few years later, Michelle would commute to Indiana University of Pennsylvania everyday with another student to complete her Masters in Adult Communication.

Michelle works as an Instructional Designer to write and created coursework for online classes. She has held part-time and full-time jobs, working with local and online companies. Michelle has been able to experience the socialization aspect of the full-time workplace, where she was able to go out to eat with them for lunch or go out after work for drinks and karaoke. Because Michelle’s CP causes her to type and write at a slower pace which requires her to work and think twice as hard and it takes a toll on her body, she now works part-time from home for the Southern New Hampshire University creating coursework for online Business classes.

Every dream that Michelle has held and opportunity she has been given, she has taken it. Due to her determination, desire to learn, and supportive family, Michelle has been able to live a full life and achieve her life goals. When Michelle needed an accessible vehicle and an adaptive bathtub, she saved the money to purchase them. Like all the things that Michelle has, she has worked hard for them and she’s asked for help when she needed it. Michelle has taken her blessings and difficulties for what they were and learned how to adapt to them.

In sharing Michelle’s story with you, our hope is to inspire you to take each opportunity you are given and use it to the best of your ability. No matter your situation, you are able to achieve your dreams, don’t let them slip by.

“It can be scary [to try new things], but it is even worse to deny your opportunities than to take them.”
– Michelle Gelles 

Michelle Hess of Pittsburgh, PA

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What really makes a person decide to keep fighting after so many battles and statistics tell you that you will not make it? What makes you get up day after day knowing that most of the doctors you have faced told you that you probably would not live long or achieve much in life? For Michelle Hess, it is giving 150% every day because for some reason she was given a second chance and she believes that it is through God only that she is here today.

A hospital bed, operating room, and doctors are not unfamiliar to Michele. At birth she was rushed to a hospital across town with only minutes to spare because her intestines were outside of her body, the doctors only given years to live. At the age of 27, she faced death again when an aneurysm ruptured in her right ear. From the time that the event happened to the hospital she was brought back to life three times and was left paralyzed on her right side. After over a month in a coma, 4 brain surgeries, and with part of her right frontal lobe removed, she came back stronger than ever and ready to fight the battle.

The list of all the medical miracles Michele has been through would leave you even more amazed, if you can believe it. The most astonishing fact is that she has not let the difficult recovery take control of her life. Today, Michele is in her forties and lives each day looking for anybody that needs to hear her story. To hear of the battles that she faced and how the guidance and provisions of God in her life has allowed her to fight through the list of medical battles she’s faced.

With her eagerness to show kindness and her ability to inspire others with her story, Michele’s life dream is to travel and to tell the world of the story that she was given and how it has not left her devastated, but rather given her the will to “fight tooth and nail to regain what was lost.”

We are so inspired by the story that Michele so happily shares with us and we consider ourselves blessed to be able to be her Service Coordination Agency. It is because of stories like Michele’s that Alleghenies United Cerebral Palsy continues to provide the support our participants need to live a life of independence.

Deb Hockenberry of Altoona, PA

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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!