Gwen from Idaho shares her story with us.
Hi PN Friends,
I have been living with PN for 34 years; I’m now almost 83.
I lived with it for about six years before considering I should be seeking a diagnosis for “these strange symptoms”. In that sixth year, when I was running in dress shoes (with about 2″ heels) down a sidewalk because I was late for our daughter’s college graduation brunch at a lovely up-scale hotel, I looked down and realized I’d lost one shoe and didn’t even know it! So, I ran back down the street until I found it about a half block away from where I had noticed its loss. Within about a year after that, I sought a diagnosis.
Not believing the evaluating and diagnosing physician (a neurologist) since I had never heard of that disease/disorder, I sought a second diagnosis. Still quite disbelieving, I eventually sought a diagnosis from Mayo Clinic – Rochester. Through extensive testing over ten days, that awesome clinic confirmed the diagnosis, adding a couple of new words: “Idiopathic Hereditary Peripheral Neuropathy”. Mayo’s Physical Therapy Department told me that I would never be wheel-chair-bound, but that it was a progressive disease, and I could expect the symptoms to increase – especially causing my balance to become more challenging. Through evaluation methods, they also reported the loss of 85% of the use of my fingers. The docs recommended no meds, but to “keep moving”. I have kept that at the forefront of my mind forever, and have never stopped moving.
I have been blessed not to have much pain with my PN. I know that is a significant advantage, and consequently, I have a true soft spot in my heart for PN patients who struggle with constant pain.
Fifteen years ago, I was introduced to an amazing “Wizard of Peripheral Neuropathy” about how to strengthen my body to deal with It. She is a mature physical therapist who literally changed my life. I continued to work with her twice weekly for eight years, until my husband and I were forced (by age) to move away from the city in which her clinical practice was located to a senior living community where one of our children was residing. The most remarkable method for continuing to strengthen my core (the most important work of a PN patient) was a water workout routine that she created for me, which I have continued to use (with occasional modifications) to this day.
I also began the faithful use of a light-weight and portable four-wheeled walker 13 years ago. It is always within arms’ length of me, no matter where I am at any time….unless I have furniture or the side of a car to lean on as I walk very slowly and carefully to get to the walker. I still fold up that walker, load it into the cargo area of our medium-sized SUV, to take it with me, independently, wherever I need to go….to appointments, to shop, to a variety of events and activities. Because it is designed with a comfy seat on it, I frequently sit down when necessary, because I am also a post-spine-surgery patient of three spinal fusions. Additionally, I’ve had two total knee replacements, and have Charcot Foot in both feet.
About the Charcot Feet (which I’m sure you all realize is a potential side effect of PN), I have additionally been blessed to have a phenomenal orthotist who has kept me in sturdy, and very thick orthotics, which adequately support my feet in shoes. I find that Propet makes the very best shoes for supporting Charcot Feet….the W2034 model that comes in about three colors, with adequate interior space for custom orthotics.
I faithfully keep up my water workout routines 2-3 times weekly, and would do so more frequently, if “life” didn’t simply get in the way!