Amber Pavalko of Bowmansville wanted to go for bicycle rides with her 6-year-old daughter, Addie. What should be a simple desire is complicated by the fact that Amber has Chiari malformation, a neurological condition in which the brain extends into the spinal column. Chiari is associated with a variety of other physical problems including Ehlers-Danlos syndrome (EDS), an inheritable connective tissue disorder, and syringomyelia, which occurs when a syrinx, a cyst caused by a buildup of fluid, forms in the spinal cord.
Amber has been dealing with the issues related to Chiari since the birth of her daughter in July 2013. In the time since, she has been undergoing both physical and occupational therapy, but her health issues have made it difficult for her to make progress in either area. In the last year, Amber has improved to the point that when her occupational therapist, Erica Lausch, asked if there was anything she wanted to work toward, she said she wanted to ride a bike with Addie.
Finding a bicycle that would work for her, however, was no easy task. "I have balance issues, and I can't turn my head, so a regular bike would not be an option," explained Amber, who looked at recumbent bicycles and found their price tag to be a problem as well. "When you're sick, you spend so much money traveling to appointments and all the things you need," she explained.
Erica was not ready to give up. She contacted her friend Victoria Warfel of Lititz AMBUCS, a civic group that works to create independence and mobility for people with disabilities, and asked if the organization, known for providing adaptive bicycles for children, could help an adult. "They have all types of bikes, but you need a therapist to figure out what type of bike will work for an individual," reported Erica. "I figured out what I thought would work best for (Amber)," she said.
AMBUCS was able to provide Amber with a bike that could work for her at no cost. The bike has three wheels, hand brakes, and a number of special mirrors so Amber can see behind her. She hopes to be able to ride it with Addie by spring. Currently, Amber is looking for a system to turn the bike into a trainer for stationary use indoors and doing modified exercises to help her build the muscles she will need to be able to ride.
Amber's Chiari issues have required her to undergo 15 brain and spinal cord surgeries, some of which were necessary to save her life. The high pressure in her brain caused by excess spinal fluid had to be relieved. "(In 2017), my neurosurgeon stabilized my spine ... which decreases a lot of mobility, but it saved my life," said Amber, who added that she is grateful for the titanium hardware that holds her head in a forward position. "Without this, when I turned my neck, it dislocated certain joints, causing me to not be able to breathe."
Following her second shunt surgery, done by a specialist in Maryland, Amber began to feel well enough to engage in more daily living activities, although she still cannot drive and she tires easily.
Amber is looking forward to being able to get out on the bike. "It's giving me another way to exercise," she said. "With all the hardware, I lost everything but walking." Before the onset of the Chiari symptoms, Amber liked to do aerobics and interval training. "That would all be too high impact for me now," she said. "With high pressure, you can't jump up and down."
Amber is also thankful to Erica, AMBUCS, and others who have gone the extra mile for her. "I am not an inside-the-box patient," said Amber, "(but) people who have invested in me and walked with me are why I can still be a mom."
Amber's mother, Pam Jaskierski, added that she is especially grateful for those who have been willing to step into Amber's life. "(The specialist) who helped her was a godsend because he listened, and he fixed it," said Pam. "Otherwise we would not be here."
Lititz AMBUCS is a local member of a national charitable service organization. The organization holds annual fundraisers in Lititz Springs Park. Readers who want to know more about the organization may visit https://lititzambucs.com or email Ambucs@ptd.net.
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