Living with PN, do you find yourself retreating from life?

@ray666 Hi, Ray - Yeah, I don't think anyone outside of experiencing PN can appreciate the exhaustion that the constant deliberation and concentration (great words, there!) can exact on a person. All part of the bargain, but it does tend to isolate a person, at least emotionally. At the same time, I don't believe anyone should feel any shame in this. It is how our bodies respond to living to an age for which we were not necessarily prepared. Here where I live, short courses are offered in ways to prepare for, say, selecting an assisted living facility, or for deciding on long-term care insurance, or for preparing a trust, or for planning a funeral, or for leaving a will, documenting a healthcare power of attorney, or for choosing an executor ~ but not for the 24/7/365 hour-by-hour attentiveness needed to keep oneself standing or seated by plan. There is a lot of great advice on Connect about researching what works for some, for staying educated about PN, and for sharing our interconnectedness in our challenges. I'm thankful for the comments and testimonies. Prayers that we all stay safe and well! Barb

Good morning, Barb (@bjk3) I happened to mention to a friend (a long-distance phone call) my need, if I want NOT to fall, to "talk" deliberately and with conscious concentration to my various body parts as some sort of strange new "phenomenon" now that I'm 80 and have PN. The friend I was talking to now lives halfway across the U.S. from me. Years ago, he and I were long-distance running mates. He replied, "But, Ray, don't you remember? When we were in the middle of some long-distance run, we used to 'talk' to our body parts then, too." On the phone yesterday, we concluded that "talking" to one's body parts (i.e., listening to what your body is telling you) is something we do when it matters. When it's important. As not falling, at 80, is important to me now. // Cheers, Barb! ––Ray (@ray666)

Thanks for sharing this Ray @ray666. Kind of brought back some memories from yesteryears - feet don’t fail me now 🙃

Good morning, Barb (@bjk3) I happened to mention to a friend (a long-distance phone call) my need, if I want NOT to fall, to "talk" deliberately and with conscious concentration to my various body parts as some sort of strange new "phenomenon" now that I'm 80 and have PN. The friend I was talking to now lives halfway across the U.S. from me. Years ago, he and I were long-distance running mates. He replied, "But, Ray, don't you remember? When we were in the middle of some long-distance run, we used to 'talk' to our body parts then, too." On the phone yesterday, we concluded that "talking" to one's body parts (i.e., listening to what your body is telling you) is something we do when it matters. When it's important. As not falling, at 80, is important to me now. // Cheers, Barb! ––Ray (@ray666)

@ray666 and @johnbishop ~
Yes, and it almost always works! I remember, Ray, you had said last fall that you found yourself talking at times (often?) when you were at home, and that is definitely my experience, too. Not necessarily to myself or even to my dog (those are additional conversations), but when I'm on stairs of any kind, or having to negotiate uneven ground outside (doggie duty), or even moving about the house in the evening when my energy is definitely at its lowest point. It's more an audible reminder to pay attention to where I am and less to where I'm going. and to all my senses (as @quietriver pointed out) since balance involves them all.
Cheers right back, Ray, for a good week ahead!! Barb

@ray666 and @johnbishop ~
Yes, and it almost always works! I remember, Ray, you had said last fall that you found yourself talking at times (often?) when you were at home, and that is definitely my experience, too. Not necessarily to myself or even to my dog (those are additional conversations), but when I'm on stairs of any kind, or having to negotiate uneven ground outside (doggie duty), or even moving about the house in the evening when my energy is definitely at its lowest point. It's more an audible reminder to pay attention to where I am and less to where I'm going. and to all my senses (as @quietriver pointed out) since balance involves them all.
Cheers right back, Ray, for a good week ahead!! Barb

Hello,

My falls, too, have always involved some "other something," never, in my case, a glob of bisque or a 16-pound dog, but nevertheless, it's always involved some "other something." The "other something" involved in my last fall was a broken dish. I'd successfully swept up and tossed into the trash the majority of the shards, and was bending over with a tiny brush to whisk into a pan the last of the fragments––and THUD! down I went. Other than my ego, I hadn't injured myself. However, realized immediately that I'd fallen because I'd momentarily stopped talking to my body's internal gyroscope, the mechanism that––if I oay it strict attention 24/7––I'll avoid "surprise" falls. (I suppose all falls are "surprise" falls, aren't they?) Since PN stole my youthful good balance, I've had to resort to talking to body with more care anddeliberation than I ever had to in years past: talking to my feet, my akles, my knees, my hips, my center of balance, the position of my head, on and on and on, to every mobile part of me. Doing this demands a level of concentration that, until PN, was wholly unknown to me, and now that I live with PN all day, every day, I can find quite exhausting.

Ray (@ray666)

@ray666
Quietriver: Good morning Ray. lad to hear you at leased took the time to see what your inatention was that caused the fall. Several years ago now my balance was so bad I couldn't turn without falling. I started with the eyes and ears. I took a couple pillows and threw on the floor incase I did a nose dive. Then went down onto my knees. Bent my body forward and started moving in a circle both ways, When I was able to do that I started moving and body in circles as I improve my balancr I started rolling my eyes and that inproved I started rolling the another direction that the head and the body in another direction that the head.I found my brain head, eyes and body just wasn't coordinated. It took a couple weeks to get everything to work in different directions. I started with 15 mine and went to 30. To help things along I started rolling my eyes while watching Tv. moving to things at different distances ad do it slow enought that the eyes focus on every thing. This is excelent training for the eyes on focusing diferent things faster as you change distances, It even helps you when driving as you will use your prefixal vision that is while looking streight ahead you are also becoming aware of everything that is coming from the side allowing you to look and decide if it is safe. To check your side vision I use one finger starting at the ear I find My side vision is just forward of my ear. and I pay attention to it. I learned to do that while training to be a Motorcycle Officer many years ago and it saved my life many times. So I still do it today when walking or driving. I don't ride much anymore but still enjoy it as it helps my balance but incase of a mistake the heeling is alot slower. enjoy brother Ray and keep building yourself up.

Hello, quietriver (@quietriver)

Thank you! You've presented me with a fabulous balance tutorial. I intend to print out and save your post. Not only do you offer specific practices, but the sum-total, the message of your post is Never Give Up! I find that so heartening. I need to have words like yours at the ready whenever so determination begins to sag––and sag it will do!

I first began to experience balance difficulties way, way back in the early 2010s, shortly after I retired. I'd not been diagnosed with anything then. I chalked my wobbly balance up to "getting older." I wasn't diagnosed with PN until the summer of 2023, only three years ago. Still, I was able to manage my less-than-perfect balance. I believe that was because my legs were still strong (thank to years of long-distance running).

But in the spring of 2024, I contracted a nasty sepsis infection, which left me mostly bed- and recliner-ridden for 14 months! It was those chiefly inactive 14 months that sapped my legs of all their strength. It's working to rebuild that lost strength that is my No. 1 exercise preoccupation these days––and oh my, oh my, what a long and tedious process this is! I am learning patience in a way I'd never learned it before.

I wish success well and everlasting determination in your work to keep yourself well, @quietriver.

Here's wishing you the very best!
Ray (@ray666)

@ray666 this is Quietriver again I have something for you to think about. The program I put out I call the Robert L simonds Brain recovery program. It seems that as folks age they use their Brain less.and the less you ues it the worse it gets.
I guess you have to think like a New Born Their brain is not programed so every thing they see and do is new to them and that little brain stores it Older folks are like that new born except their brain was programed over the years but sits unused in their head as they don't want to use the memory they accuirs ed and it is going to waste that includes their Balance ability to walk, to read Write talk think and remembering how to walk properly. So like a new born they have to reprogram their memory to work again just like a new born does to start their life.
Folks remember sliding their feet acrss the floor is a sure way to fall and lifting your feet and walking proplerty like they used to gives them back back your balance and confidence they have lost. Start playing games going out and socializing, Don't just sit there. reading a book. The older folks I know sitting in nursing homes are just sitting lookiing at eack other and feeling sorry for them selves and are just waiting to die. I went into one nurseing hme and said Hi folks; you know I love to sing will you join me and almose every one did and we sang You Are My Sunshine. Many knew every word and wer good singers and I got them to tell about themself, where they live and so on. a few mo later a few were socializing the rest returned to their self pitty. I sugested to the home they get a activity director and help these folks live out the lives iin happiness. That also failed. The homes think about the big dollar and not much else. thought that nursing home did start getting people to come in and entertain their live in once a week.