Jonell Spicer Embraces Muscular Dystrophy and Uses Her Drive to Help Others

United Access gave Jonell Spicer a better attitude and renewed happiness with hand controls in her van.

United Access gave Jonell Spicer a better attitude and renewed happiness with hand controls in her van.

Editor’s Note: Jonell Spicer from West Memphis, Arkansas, has Facial Scapula Humoral (FSH) Muscular Dystrophy (MD), which is an inherited disease that causes degeneration of the muscles. Sometimes the disease progresses quickly, and sometimes it progresses slowly. Right now, Spicer is in a plateau stage, which according to Jonell, “Is a great and wonderful thing.” Jonell’s grandmother, her uncle and her mother all currently have the same disease. Part 1 of a 4-part series.

I’ve had my van modified for my condition since December 9, 2010. Before then, my feet got tired from using the pedals. To alleviate this, I had United Access install hand controls. Now I have access to them when my feet tire and I need to rest. I had to get accustomed to using hand controls to operate the vehicle. However, once I got the hang of it, I was amazed at how beneficial they were. In fact, I couldn’t drive without the hand controls now.

It was a very special day when the hand controls were installed in my van. I felt a renewed sense of hope and also of pride in my vehicle and what I could accomplish for myself. However, I still wanted to achieve more in life. I believed the only way I could improve my circumstances would be to earn a college degree. Having a van that I could operate on my own would help me to reach that goal.

United Access allows disabled people to drive a vehicle with hand controls.

United Access allows disabled people to drive a vehicle with hand controls.

When I lost my mobility, I struggled with depression for a long time, and nearly became a recluse. Learning I had MD at a young 12 years-old was devastating, but gaining mobility through my vehicle completely changed my attitude. I now embrace my disease and want to advocate and help bring education and awareness to others.

Many people have asked me, “How did you get over the depression after you found out you had MD?” I explained that I started surrounding myself with positive people and attending church regularly.
 
My faith helped me to stay grounded, but I think the biggest mental factor was attending college. I went through the same pity party that many disabled people go through and asked myself questions like, “What are you going to do with your life? What can you do with your life?”
 
Then I had an epiphany that I had this disease, and that it was my responsibility to help others who suffered with it.

I realized that I could make the general public more aware of MD, and also more aware of what these people can accomplish. My hope is to become a social worker and counselor.  Helping others as a career would be ideal!

When I was a teenager, I didn’t have any counseling following my diagnosis. There was no one to tell me what to expect or what kind of effects MD would have on me. I didn’t know how MD would change my life, or what I could do to help maintain ormalcy. My perception of the future was skewed.

When children are diagnosed at a young age with MD like I was, they don’t really understand what’s happening to them. They don’t know what to expect, or what their limitations actually will be. The future feels unsure. These kids need to know they still can have dreams and achieve those dreams.

If I’d had someone who already had traveled the road with MD that I was about to travel tell me what my life would be like, where to get help, and that I could still achieve my dreams, my teenage years might have been more bearable. Now that I have that knowledge, I believe the best thing I can do with the rest of my life is to take that knowledge and share it with young people everywhere who have been diagnosed with MD.

If people with MD are educated and positively supported, they will be happy and optimistic.

If people with MD are educated and positively supported, they will be happy and optimistic.

These kids need to know that they still have bright futures. I’ve learned that we can always keep a smile on our faces and always find something for which to be grateful. I want to share the hope and encouragement I have with others. I want to get out into communities, talk to people, and reassure them that it’s okay to ask questions about MD. The more people who become educated and understand MD, the easier people with MD will be able to live and work alongside others.

People with MD can be productive, successful and achieve the goals we haven’t thought we can reach, when we’ve first learned that we have MD. I want to be the kind of counselor, friend and motivator that I wish I could’ve had when I was 12 years-old, young and newly diagnosed.

Today, I think I can help others who will go through the same fears of not knowing what to expect. I want to tell young people with MD that they can still have great lives. Sure, a life with MD will be different, but you can go to school, you can graduate, you can be a productive member of society, you can find your mission in life, and you can achieve it.

 To learn more about United Access, visit www.unitedaccess.com. And, if you’re a veteran, you can go to the webpage and apply for a voucher worth $1,000 from the government to have a vehicle adapted. Keep up with this story and learn more!

Next: United Access Helps Jonell Spicer Be Independent Even With Muscular Dystrophy

About the Author: For the last 12 years, John E. Phillips of Vestavia, Alabama, has been a professional blogger for major companies, corporations and tourism associations throughout the nation. During his 24 years as Outdoor Editor for “The Birmingham Post-Herald” newspaper, he published more than 7,000 newspaper columns and sold more than 100,000 of his photos to newspapers, magazines and internet sites. He also hosted a radio show that was syndicated at 27 radio stations; created, wrote and sold a syndicated newspaper column that ran in 38 newspapers for more than a decade; and wrote and sold more than 30 books. Learn more at http://www.nighthawkpublications.com

About UroMed Catheters
Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is one of the nation’s leading providers of single-use catheters, urological and disposable medical supplies, including intermittent catheters, closed system catheters, condom catheters, pediatric catheters and continence care products. UroMed is nationally accredited for Medicare reimbursement and most state Medicaid plans, and partners with private health insurance providers and health plans to provide patients with single-use catheters, catheter kits and incontinence products. UroMed also has seven staffed regional offices located in Boston, MA; Columbia, SC; Jacksonville, FL; Dallas, TX; Carlsbad, CA; Knoxville, TN; Richmond, VA; and Baton Rouge, LA; enabling next-day delivery after a customer’s initial medical supply order. For more information, please visit http://www.uromed.com or call 1-800-841-1233.

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