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Jamie Spore: ‘I am proof that dreams absolutely do come true!’

Miss-Wheelchair-Ad-5UPDATE: Jamie Spore, who was crowned Ms. Wheelchair Michigan 2016 in February, will vie for the title of Ms. Wheelchair America 2017 this week. Jamie joins 25 other contestants from across the country who will compete in the 45th annual national pageant, which celebrates the achievements of women with disabilities. The Aug. 8-14 event is being held in at the Amway Grand Rapids Hotel in Grand Rapids. The Mary Free Bed Guild is a sponsor of the 2017 pageant.

Guest blog by Jamie Spore, Mary Free Bed alumni. Editor’s note: Jamie was nominated for a 2014 Ludington & Scottville Area Chamber of Commerce Community Service Award. Read more here. 

Hello. My name is Jamie Spore and I have been an L2-L3 paraplegic since birth. Thirty-three years ago, I was born with the spinal cord defect called spina bifida. Since then, a wheelchair has been my main mode of transportation.

I did use full leg braces and a walker for a few hours each day until I was 12 or 13 years old. That’s when I stopped using the braces and walker altogether because they were heavy and cumbersome. I continued to have weekly physical therapy sessions and attended the annual comprehensive spina bifida clinic at Mary Free Bed until I aged out it. After that, I did range of motion exercises and therapy on my legs, but I didn’t use them and I didn’t think much about it, because I can’t feel them.

I have always believed that life is too short for regrets. But if I have one regret, it was giving up the use of my legs.

Fast forward several years: In June of 2011, I acquired a very large, stage 3 pressure ulcer on my sacrum and ischium. After my aunt had been diagnosed with terminal cancer six months earlier, I decided to participate in a Relay for Life, which had me wheeling around the local high school track for 24 hours straight. This extended period of time in my wheelchair resulted in that large, deep, ugly pressure sore.

JS_SpinaBifida_MFBI spent the next 23-plus months on bed rest to heal that sore. Due to the extensive damage to my skin and underlying tissues, I have spent more than 31 months on bed rest over the past 3.5 years.

In the brief periods when I have not been on bed rest, I have attended physical therapy sessions to regain strength in my arms and shoulders. During these therapy sessions, I always held on to the hope that I would be able to regain enough strength in my legs to allow me to at least stand throughout the day to relieve the pressure on the skin of my back side. However, three different physical therapists told me the same thing: You haven’t walked in almost two decades so don’t worry about your legs.

This was very frustrating to me because I have always been an independent and strong-willed person. Meanwhile, a vascular surgeon told me that the poor circulation in my legs was getting worse and I would most likely have to have my legs amputated at the knees within 2 to 5 years.

This was unacceptable to me, so I worked with my primary care physician to obtain a referral to Mary Free Bed for physical therapy. I needed to find someone who believed in my ability to stand again as much I did. I found that at Mary Free Bed.

At Mary Free Bed, I met physical therapist Mary Berkenpas, who believed in me from  Day 1. When I told her that I wanted to stand and or walk again, her response was, “Okay, show me whatcha got in your legs.”

After a few weeks of doing stretches and range-of-motion exercises at Mary Free Bed and at home, I tried adjustable leg braces. I was able to successfully stand and walk in the parallel bars with the adjustable leg braces, so Mary put me in contact with orthotist Pat Dorgan, who measured me and custom built full leg braces, also known as Knee Ankle Foot Orthotics (KAFOs). I received them in August of 2014.

JS_SpinaBifida_HSFive days later, I had two major surgeries on my bladder and stomach. While I was recovering, I acquired another deep pressure sore, which resulted in another 3 months of bed rest to heal.

In December, I resumed physical therapy again and got to finally start standing and walking with my custom KAFOs. In the gym at Mary Free Bed, I stood and walked with my KAFOs for the first time in 19 years. It was the most empowering and amazing experience of my life!

After continued work with Mary and with occupational therapist Lauren Tweedy, I have graduated from physical and occupational therapy at Mary Free Bed. I am able to walk more than 200 feet at a time before I need to take a break. It feels amazing!

Because I am a realist, I know that I will never run a marathon or even walk around my neighborhood or local Walmart store. I am a “household ambulator,” which means that my wheelchair is likely to always be my main mode of transportation. But I am able to effectively use my leg braces and walker to walk around in my apartment, where I live independently and take care of myself. It is a dream come true!!

At this point, I am very functional using my leg braces and walker in my everyday life. While I am not constantly standing up and walking around, I do wear my leg braces 75 to 80 percent of the day. It’s incredible!!

I totally believe in miracles because Mary Free Bed gave me one. I owe my therapists, Mary Berkenpas and Lauren Tweedy, so much because they gave me my life and my independence beyond anything that I ever could have dreamed of! They both have a special place in my life and in my heart!

We all have our struggles in our lives. There are times when things may seem hopeless, but here’s my advice: Keep your chin up and stay positive because, with hope, anything is possible! I am proof that dreams absolutely do come true!


Lynnette Fillips

Love you Jamie! Way to go! Keep on inspiring! And we will see you at the next exciting event!


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