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 often  figure out different ways to get where you want to go. I use the edge of the bed, sturdy chairs, dressers, and tables at times. I'm very creative. But mostly I rely on my walker to get anywhere. And by anywhere what I really mean is everywhere.  It was only a matter of time  before the calluses started to form. Painful hard spots of skin on my hands and palms developed. Like dry scales that protect me while using my walker.  I need it to lift myself up from a seated position. And I lean on it to support my upper and lower body when getting from place to place.  A lot of repetitive pressure has built up these stiff calluses.   The skin at the site is no longer soft or smooth. Probably never will be again. But that's what lotion is for, right?  Calluses aren't necessarily bad though. Anyone who has toughened up their finge

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP you must often  figure out different ways to get where you want to go. I use the edge of the bed, sturdy chairs, dressers, and tables at times. I'm very creative. But mostly I rely on my walker to get anywhere. And by anywhere what I really mean is everywhere.  Besides a walker, I discovered that I needed grab bars. Helping hands , so to speak.  I never thought I'd have to hire someone to put in grab bars for me in my own bathroom but frankly it was a good investment. That's because it allows me to continue to maintain some semblance of independence in this very personal arena. These sturdy bars help me when I need it most. They give me something to hold onto. A place of safety. I have lost so much mobility but being able to continue to wash up, brush and floss, take a shower, and use the toilet are important abilities to maintain.  How about you? What changes ha

  My name is John and I have peripheral neuropathy (PN). As we age, sometimes we slow down. Now with my walker, I see turtles on roller skates zipping past me waving and laughing.     (Here's an article about how tough it is to  deal with pain  and another about how it's  OK to say "Owww!!!" )   Dealing with others pushing in front of you because you're slower or using a walker makes doing tasks even harder. And slower.  Today I had a little example of what it means to have someone take cuts in front of me in a clearly marked line. I was getting a blood draw and just as I was about to reach the sign-in sheet a woman stepped in front of me and grabbed the clipboard. She wasn't overtly unkind about it. She simply ignored me and put herself first.  I mean, sure, she was faster than me but I was a couple steps away and clearly heading for the same location. It was obvious what was going on. Simply put, she could have chosen to be polite, to pause and let me sign

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:  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