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Patient Stories


Jane’s Journey: Jell-O on the Beach

An avid hiker and outdoor enthusiast, Jane shares her most challenging climb – her journey to live with and thrive despite her peripheral neuropathy. Jane recently shared her story with the Foundation for Peripheral Neuropathy in order to help give hope to other patients.

When I returned to my favorite spot in Hawaii after several years, I was a different person. Once confident, athletic, and steady on my feet and legs — the change, the stark contrast, literally threw me.

My peripheral neuropathy (PN) had progressed to the point that my balance was knocked off by the wind, the waves, and the uneven sandy beach — both in and out of the water. I felt like Jell-OTM. Unstable and attempting to laugh it off with my family, yet devastated inside and trying to take in the blunt reality of PN. My ‘normal’ had abandoned me!

On that vacation, using my arms to get up on a paddleboard left me exhausted. I eventually had to use seal-like movements, maneuvering my weakened body across the board’s surface. There was no way I could stand or balance on it. I read an article written by a doctor, who expressed five health conditions she would never want to have. Peripheral neuropathy was one of them. In an odd, but powerful way, it validated the magnitude of PN for me. What a jolt when symptoms of PN began over a decade ago in my mid-50s. It began with the feeling of a tight strand of hair wrapped around my big toe and being off-balance.

My husband noticed the latter.

Eventually, my PN progressed. It felt like bee stings and bites and numbness in my feet, and like there were bits of glass cutting into my flesh. Also grabbing my attention was a ‘bunched sock’ feeling, a burning, and an occasional inability to feel the surface of the bottom of my foot. I also experienced a sensation like leather strips on the bottoms of my feet, which made them feel elevated in spots and “off.” My wonderful neurologist diagnosed PN via my symptoms and electromyography (EMG) about seven years ago. The onset of this idiopathic PN was likely an auto accident, where a drunk driver plowed into me and injured the right side of my body.

My physical therapist jumped into a litany of remedies along with suggesting that someday I would, no doubt, need a cane (they even have sparkly ones, she said!). Premature in my heart and mind, this statement which initially turned me off, would become a truth, and a necessity of sorts. I had to begin to use trekking poles for walking and hiking. I am grateful for her honesty!

I have been offered meds for the pain but have not used them because I am so leery of side effects.

“You are my ‘Falling Grandma’!” declared one of my granddaughters. The countless falls made what is often an ‘invisible’ issue come to light in the reality of my new world. The last big fall I had, I was standing on a chair, dusting a high shelf, when I lost my balance and then fell. With a broken tailbone and multiple bruises, I learned the crucial lesson to ask for help. It was quite humbling.

Grandkids’ sports are tricky when navigating the bleachers at basketball or track. I have a sweet husband who often lends a hand. A retired physician, he maintains a beautiful bedside manner in our daily life together. Occasionally, in the middle of the night when my feet go crazy and I cannot quiet the pain or the pressure, Mike gets up and massages my feet.

I was 13 when we met, and he was 15

Nearing 48 years of marriage, we are definitely a team… in joy, in grief, and in the unknown where things like PN take you to another level. Together we are avid hikers, and Mike’s supportive spirit enabled me to hike almost two years ago up to Reed Lakes in Alaska‘s gorgeous Hatcher Pass. It was a goal we were not sure we could pull off. But with grit and cautious walking and the trekking poles we purchased, we did it. At times, my legs could barely fire up to move. And we would end up laughing.

Thank God that Alaska twilight did not come until midnight or later, so that we could finish the journey. I felt as though I had jumped over the moon!

A few gold nuggets that have encouraged me along the way:

  • Use compression socks for air travel, hiking, or long days.
  • Get a half-size bigger tennis shoe or hiking boot to allow for toe space.
  • Be mindful of sugar intake.
  • Drink lots of water.
  • Learn to get up, if you fall, by turning yourself on all fours, hands and knees.
  • Find things and people that make you laugh and think positively.
  • Take advantage of all resources, including those offered by the Foundation for Peripheral Neuropathy.
  • Walking, strength training, and Pilates have been key for me. Just MOVE!

My faith in God pours hope, endurance, and promises into my soul. I still pray to be healed here on earth.

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