Life with Neuropathy

                                  YOU Are One of the First 10,000 Visitors:  Thanks for Stopping By! Thanks for visiting the LifeWithNeuropathy blog and reading some random thoughts about surviving and thriving with the pain of peripheral neuropathy.  I was initially diagnosed with Idiopathic Peripheral Neuropathy. Then my neurologist decided -- after much testing -- that I had CIDP (Chronic Inflammatory Demylinating Polyneuropathy). Next I was forced to get a second opinion because my old neuro doc moved away and my new neuro doc wasn't sure I actually had CIDP. Turns out that in his opinion, I didn't.  So much for getting IVIG infusions as I'd been earlier promised. That pathway was shut to me.   Living with neuropathy of any type and from any source is difficult. The pain level is often what I call "off the charts." Not that it always feels completely horrible, but quite frequently it does.  Like anyone with a damaged peripheral nervous system, I have no choic

  This Little Toilet of Mine:  Definitely Isn't ADA Compliant!   Hi, my name is John and I ha ve severe Idiopathic Peripheral Neuropathy (IDP).  So I'm used to pain. I don't like it one bit but I live with it. It makes me very tired. Just like your pain probably does. Please read here to learn more about my  worsening symptoms.  It can even hurt to  stand . Allow me to share a little story with you... 'Twas the night before the wedding and all through the Air B-n-B, 10 people split five bedrooms, and two bathrooms, not three... Not sure how many of you have tried an Air B-n-B and been disappointed. The people who are brave enough to open their home (or one of their many homes) really don't know who they're getting when they provide the secret code to a stranger. Of course, those who are renting a place for the night don't know what's in store for them until they open that front door.  Things can go very well or very poorly. From my very minimal experienc

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

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