Life with Neuropathy

Life with Neuropathy:  Worsening Symptoms Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy.  I guess it was to be expected especially because I kept getting the same message over and over. Doctor after doctor. Still, it's hard to hear and to process as truth. I'm talking about the diagnosis of peripheral neuropathy and the prediction that the condition will continue to worsen until I'll need a wheelchair to get around.  So far, this has been happening true to form except more quickly than would be considered normal. Initially, I didn't use a cane but walked a bit unsteadily and made it through my day although it always shocked me to see my stooped back and halting walk in the reflection of store windows. Everything was fairly simple just with more pain and more fear of falling.   Sure, it was a problem, annoying, but I managed. Then as my balance faded further I found that a single cane made things a bit easier. Most of the pain was focused on my

Hi, my name is John.   A nd I have CIDP  (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP or any type of neuropathy you must  figure out how to deal with the daily issue of trying to move things both big and small while pushing a walker, or holding a cane, or ambulating unsteadily on your own two feet.  (Ah...for the good old days...)  Simply put, nothing is as easy as it used to be...   I've taken to tossing things like pill bottles, pillows, a TV remote, socks, towels, my phone or other items that like to fly. Food, not so much. But if it's carefully contained and the lid won't pop open, I might give that a try sometime. The bed and couch make nice soft landing spots!  This is definitely not the same as dropping things -- because my tremendous tossing efforts are totally intentional . Granted, sometimes what I'm throwing ends up on the floor so I guess that technically turns it into a dropped item. But against my will. That's for sure.  Wi

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ).  How did you feel when you got your Handicap Sticker for your license plate? Or maybe you chose a placard for your rear-view mirror. I got the latter because you can move it easily from vehicle to vehicle.  Honestly, I never thought the day would come.  Although I do remember when I was initially diagnosed with "peripheral neuopathy" -- the idiopathic kind. After a difficult nerve conduction test I was given the terrible news. "You'll just get worse and worse until you need a cane, a walker, and eventually a wheelchair... And there's nothing you can do to prevent it."   No encouragement. No hope. That was a very dark day.  But then I found a neurologist who confirmed after a spinal tap that I had CIDP. And  I learned that there were some options. Which is good. Full disclosure: I'm still waiting to try some of those options but I least I have a sparkle of hope tha

My name is John and I have peripheral neuropathy. I drop at least one of my many pills every day. Not sure exactly why, but it happens. All the time now. And then I struggle to pick up what is far below me on the ground. With my joint issues, bending my knees and getting down to the floor is tough some days and impossible on others.  My mobility isn't what it used to be. Read more here .  I've spilled lots of things and have gotten to the point of expecting it to happen. Although I never want to make a mess. Still, I sometimes do. But on the plus side, if I drop something early in the day maybe I can go for a few hours without dropping anything else. Not particularly logical, but then neither is neuropathy.  Besides pills, I've dropped spinach leaves, baby carrots, cherry tomatoes, more pills, the lids to pills, crumbs, chocolate chips, tangerine peels, water and other liquids, potato chips, cashews, almonds, soap, my comb, my phone, my keys and more. It's always someth

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

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

  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