Life with Neuropathy

My name is John and I have peripheral neuropathy. Sometimes I get greedy. I see some sugary something that someone else has and I want it. All of it.   Like the delicious super-sized sundae shake pictured above. If you saw this guy strutting down the street wouldn't you give that confection a second look? And wouldn't you wish, for a fleeting second at least, that you were the one making a spectacle of yourself slurping down a monstrous ice cream extravaganza? I have to admit that the same feelings of longing came over me when I saw a guy with the Tesla of walkers. I mean it had everything. All the special features, four slick wheels, a padded seat, comfort-lock brakes and a storage bin under the seat. Heck, it even had a fax machine! It was the bomb. Handy as handy can be. The ultimate in rollator technology and innovation.  And it wasn't mine. But I sure wished it was.  Looking at my own humble walker I felt, well, humbled. I only had two wheels and old tennis balls dec

Hi, my name is John and I have peripheral neuropathy. Sometimes I have difficulty separating my physical pain from the verbal expression of that pain. That means that sounds are triggered by my constant discomfort.  When I hurt, I say "Owww!" It's the way things work for me.  The "Owww!" serves as a placeholder for other things I might want to vocalize. I guess if I tried I could stay silent and avoid these minor verbal outbursts. And sometimes I do. Many times.  Or I might say "Owww!" under my breath.  When I'm completely alone at home, I often scream "Owww!" at the top of my lungs. Maybe scream some other things. Give voice to the emotions that are tied tightly to the knife-stabbing pains tearing through my muscles and joints. Sometimes I get tired of hiding the extent of the anguish that is part of my daily neuoropathy experience.  Read more about more neuropathy journey at Let Me Introduce Myself .  I believe it's OK to acknowled

Welcome to Life with Neuropathy. My name's John and I have peripheral neuropathy. Today let's talk about mobility. To give you a point of reference, less than a year ago I was enjoying the Daddy-Daughter dance at my child's wedding. Today I need a walker to get around. Find out more at Let's Talk about Changes .  A walker? Really? Read more about walkers here . To be honest I never thought that I'd even need a cane. Why was I so smug? No particular reason except that I'd always been relatively healthy so why would I start having problems with balance now? I'd never thought about the word neuropathy, didn't really know what it was. Or how it would change my entire world. Read more about my neuropathy journey at Let Me Introduce Myself .  To be honest, I've always had great difficulty finding comfortable shoes but that's how it's been since I started having to wear them. I grew up going barefoot mostly. I'd kick those shoes off as soon as

My name is John and I have peripheral neuropathy. This bony gentleman isn't afraid to bare his spine and neither was I. So let me share my personal experience with a lumbar puncture (affectionately known as an LP).  Never in my life would I have considered that I might be tapped to share a generous portion of my cerebral spinal fluid to allow vital tests to be run. But that's what the doctor ordered. And I couldn't avoid it.   Honestly, I worked up the situation in my head to be a horror film kind of encounter. You know -- after much struggle and screaming, I would be strapped to a table and then someone would shove a needle into my spine. This, of course, would paralyze me while the unsavory locals stole my wallet, walker, and water bottle.   But it turned out to be a much more banal experience. I was rolled from one room to another way down the hall and then had to roll from one bed to another. After that I tried to get comfortable on my stomach as my back was prepared fo

  Welcome to Life with Neuropathy. My name's John and I have peripheral neuropathy. Today let's talk about tennis balls.  So what's the deal with tennis balls and walkers? The two go together like peanut butter and jelly, Bert and Ernie, and Sonny and Cher. You see this combination everywhere especially if you stop by an assisted living facility. Swing by an ortho clinic. Or visit me in my home. Read more about famous walkers on TV at Let's Talk about Humor .  Now that I have a walker I knew it was only a matter or time before I gave in.  I'm not sure who the first person was to ever jam tennis balls onto the back legs of a two-wheeled walker but that unique practice has caught on and spread. Like an unspecified virus of unknown origin. To learn more about my neuropathy journey please read Let Me Introduce Myself .  But why? What's the reason? Well, adding tennis balls to a walker does, in fact, make them safer. Provides more contact with the floor. Also, the fe

Life With Neuropathy:  A Little Humor, Very Little Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy.  So I'm used to using a walker. I don't like it but I live with it. Read more about  worsening symptoms.  Here are also a few thoughts about standing tall during tough times.  Today let's talk about humor. One of the ways that I've always survived the daily grind (even before being diagnosed with neuropathy) was looking at the world through a very strange and crooked lens. To be honest, sometimes (OK, lots of times) I was the only one laughing, but as my wife likes to say, "You're definitely able to amuse yourself."  And that's a gift, right?  Plus it's true. I see things in weird ways and sometimes stuff just makes me laugh. No explanation necessary. How about you? What's your general outlook on life? Half-full, half-empty -- or no glass at all? When things got so bad for me that I needed to use a walker, a dear friend

Life with Neuropathy:  Let's Talk about Changes Welcome to Life with Neuropathy. My name's John and I have idiopathic peripheral neuropathy. Today let's talk about changes. Before my neuropathy kicked in, I used to be able to easily get up from a chair and go where I wanted to. Whenever I wanted to. No issues, nothing to consider. Things weren't difficult. I could move, walk or exercise, and didn't have to worry that my feet would get numb when I went for a long drive. Read more at Let's Talk about Saying "Owww!"   Now it seems like I'm walking with hard towels balled up under my feet. Balance is sometimes a problem. There’s tingling, needle-pricks and other strange sensations. I’m sure you know what I mean. I never quite feel like I have full contact with the ground. I frequently worry about falling. I  have constant excruciating pain in my hands all the time now.  I also find that because of the balance issues I'm more hesitant to carry

Hi, my name is John. Originally diagnosed with idopathic peripheral neuropathy, I have finally been confirmed as having CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I'm just over 60, a husband, father of 8 children and grandfather to 4. I love reading and writing and playing cribbage. I also believe I'm far too young to be dealing with the pain of neuropathy -- and yet here I am. It's part of me now.  It has changed the way that I walk, sit, stand, sleep, move and think. And much more. Getting from one place to another has become an enormous challenged. To find out more visit Let's Talk about Mobility .  I work remotely in a home office and am very thankful that I have a job, a support system, a place to live. Times are hard for us all right now. And when you add in neuropathy or any other health concern, the stress can grow. Become overwhelming. I've felt that anxiety rise at times especially not knowing what's in store for me in the next few weeks