From Ticks to Triumph: One Cyclist’s Cross-Country Ride for Peripheral Neuropathy Awareness
Gregory Maassen’s journey began with a hike in South Africa and a run-in with a nest of 70 to 80 ticks. What followed was a years-long battle with a rare nerve condition, post-infectious small fiber sensory neuropathy, and a remarkable transformation into an advocate for those living with the often-debilitating illness.
The Invisible Illness: Understanding Peripheral Neuropathy
Peripheral neuropathy, affecting millions of Americans, involves damage to the peripheral nerves – those outside of the brain and spinal cord. Dr. Ahmet Hoke, director and professor at the Center of Neurology at Johns Hopkins University School of Medicine, explains that symptoms can range from numbness to intense burning, electric shock-like sensations, and significantly impact quality of life. This particular form, small fiber sensory neuropathy, is often tricky to diagnose.
A Life Interrupted, Then Reimagined
Maassen’s initial symptoms after the tick bite were temporary, but the pain returned with increasing intensity. He spent nearly a year bedridden before receiving a diagnosis at Johns Hopkins in 2019. Treatment there, under the care of Dr. Hoke, proved pivotal. Regular exercise became a cornerstone of his recovery, leading him to channel his energy into cross-country cycling.
Cycling for a Cause: Raising Awareness and Funds
Maassen isn’t just cycling for personal healing. he’s on a mission to raise awareness and funding for research into peripheral neuropathy. His current journey, beginning March 1st, will take him from West Palm Beach, Florida, to Los Angeles, a five-month undertaking. He previously completed a similar transcontinental ride in 2022, documented in a film screened by Johns Hopkins.
“When you go across America on a bicycle, you see the country different from the car,” Maassen shared. “I have met so many fantastic people who host me who want to listen to my story.”
To date, Maassen has raised over $26,000 for the Merkin PNNR Center for Peripheral Neuropathy Research, and he intends to continue dedicating his rides to the millions affected by the condition.
The Power of Personal Stories in Medical Advocacy
Maassen’s story highlights the growing trend of patients becoming active advocates for their own health and for research into rare diseases. Sharing personal experiences can humanize complex medical conditions and inspire others to seek diagnosis, and treatment. The documentary of his 2022 ride exemplifies this, offering a visual and emotional connection to the challenges of living with peripheral neuropathy.
Future Trends: Technology and Neuropathy Management
While cycling and exercise are proving beneficial for Maassen, advancements in technology are also shaping the future of neuropathy management. Research is ongoing into:
- Neuromodulation techniques: These therapies use electrical or magnetic stimulation to alter nerve activity and reduce pain.
- Advanced diagnostic tools: Improved methods for detecting and quantifying nerve damage are crucial for early diagnosis and targeted treatment.
- Personalized medicine: Tailoring treatment plans based on an individual’s genetic makeup and specific neuropathy subtype.
FAQ
- What is peripheral neuropathy? It’s damage to the nerves outside the brain and spinal cord, causing symptoms like pain, numbness, and weakness.
- What causes small fiber sensory neuropathy? It can be caused by infections, autoimmune diseases, or genetic factors.
- How is peripheral neuropathy treated? Treatment varies depending on the cause and severity, but may include medication, physical therapy, and lifestyle changes.
- Where can I learn more about peripheral neuropathy? Visit the Merkin PNNR Center for Peripheral Neuropathy Research website.
Pro Tip: Early diagnosis is key to managing peripheral neuropathy. If you experience persistent pain, numbness, or tingling in your hands or feet, consult a healthcare professional.
Did you know? Peripheral neuropathy can affect people of all ages, and Notice over 100 different types.
Support Gregory Maassen’s mission and learn more about peripheral neuropathy by following his journey and considering a donation to the Merkin PNNR Center for Peripheral Neuropathy Research. Share this article to help spread awareness!
