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

@bjk3 Barb - Since my wife passed away, my adult kids suggested (insisted!!) that I have a fall monitor device. Mine looks like a watch and can be worn in several ways. No home monitor, mine works on cell services and has a built in GPS. Cost less than $100 to purchase and monitor service is about $40 per month and works anywhere I go. I've been 400 miles from home, bumped it and within seconds, it sent off a notice to the 24/7 monitoring service. You may have one, but I thought this would mention this to benefit others as well. Ed

@njed HI This is Bashful Bob thanks for sharing . That device sounds great for older folks alone That tend to fall alot. I found the the older we get the more we tend to slide our foot across the floor and that is dangerous. I sugested to many folk to get someone to assist them in learnibg to walk like we used to as kids. Come down on the heel and roll off the toes. I had to pratice that my self I will 90 in a couple mo and a few years ago I found myself starting to slide my foot. Then I remembered my military training on how to walk. If I fall now it is because I'm not looking at what is ahead of me. Good luck and I hope you get better. bashful Bob

I'll second what Ed says about these devices. Mell, my partner, who died last year, was the one who insisted I get one. At the time, she was facing what sounded like never-ending chemo sessions; in other words, hours when she'd be away from home and I'd be home alone. Well, now I really am home alone, and I wear my medi-alert wristwatch every day. Like Ed, I've only set it off two times, both times by accident. The first time, I knew Id set it off and was able to assure the ChatBot voice (who called in a split second!) that I was okay. The other time I'd set it off I didn't know I had and somehow hadn't heard the ChatBot voice asking if I was okay. A minute or two passed when my phone started to ring. My first thought? Another sales pitch! When it rang for the third time I thought I'd better answer. I'm glad I did! It was Denver EMT Services calling: a 'real"––and genuinely concerned person wanting to know if I needed help. I said no and apologized for their having to call. (I'm doubly glad I answered my phone. If I hadn't, the next event would have been the arrival of fireman, axes in hand, ready yo smash down my door. 🙂 ) I mentioned all this as a salute to these med-alert devices. They really work! ––Ray

@ray666 That was yet another thought I had… how would emergency workers get in if you’re unable to give them the code to get in? I very often leave public bathroom doors unlocked because I’d rather have people be able to get in quickly to help me in an emergency vs the shock of somebody walking in on me while I’m trying to quickly do my business. But I’m really not keen on leaving house doors unlocked!

@ray666 Hi, Ray. Just wanted to extend my condolences on the loss of your partner. Grief is a struggle even in the best of circumstances. But when you add in the disability of the PN and the balance issues, it DOES seem to create limits to our socializing with friends. I paint, and I take a class once a week with a teacher, and that is the extent of my socializing. I attend as much for the social interaction as for the instruction. The balance issues have not yet stopped me from getting out and about to run errands as needed. But most of my outings are for medical appointments, just like others here! I did start back at the gym this week. I only went twice and I only did 30 minutes on the exercise bike each time. But I know I need to approach it slowly. Eventually, I hope to attend some exercise classes like chair yoga and aerobics. They have aquacize classes every day, and I need to try those, too. I've heard good things from people who have attended them regularly. Like so many others, I need accountability to keep me going regularly. I hope the CBT counselor will be a help for you! Wishing you the best! Mike

@ray666 That was yet another thought I had… how would emergency workers get in if you’re unable to give them the code to get in? I very often leave public bathroom doors unlocked because I’d rather have people be able to get in quickly to help me in an emergency vs the shock of somebody walking in on me while I’m trying to quickly do my business. But I’m really not keen on leaving house doors unlocked!

@ray666 I'm fortunate, I guess, not to have such an issue with balance. Though I'm still relearning my gait after having bilateral Achilles tendon ruptures at Christmas, '23. Thank you fluoroquinalone for destroying the tissue in both tendons. I had the first tendon rebuilt in June, and the other in December, '24. After months of therapy I had a knee replacement, more PT and gait & balance work.

I have small fiber pn, technically CIDP, so I'm the one with the pain from my toes to my knees.

To answer your original question, yes, it has affected my lifestyle. A couple of times a day I lie down in my bed to calm down the pain in my feet. I don't walk more steps in a day than necessary. If a store has an electric shopping cart, I use it and immediately become invisible to other shoppers. They walk right in front of me and hog the aisles. I have to yield to pedestrians. One of these days I'll work up the nerve and take the right of way and let them deal with it.

We don't get out of the house much, except for groceries and doctor appointments and church. No more hiking or backpacking 🥺. If I have to walk very far I use my cane. It also helps to use my walker, as it takes some of the pressure from my feet, but I only use that at home. I'm grateful for the ramp my neighbor built when my Achilles tendons ruptured. I still use it. When I have groceries to carry in, I use my garden cart up the ramp, through the house, to the kitchen. Stairs are not good if I'm carrying something.

I'm thankful that I don't have problems with balance like you and many others, but let me tell you, PN pain is hard, both physically and emotionally. I wish there were a cure.

Jim

@bjk3 Barb - Since my wife passed away, my adult kids suggested (insisted!!) that I have a fall monitor device. Mine looks like a watch and can be worn in several ways. No home monitor, mine works on cell services and has a built in GPS. Cost less than $100 to purchase and monitor service is about $40 per month and works anywhere I go. I've been 400 miles from home, bumped it and within seconds, it sent off a notice to the 24/7 monitoring service. You may have one, but I thought this would mention this to benefit others as well. Ed

@njed and @bjk3, I had one of those days last Tuesday and ended up in the ER for six stitches because I'm no blood thinners and I couldn't stop the bleeding. I had my first really hard fall in a long time and the first one in inside the house, in the kitchen. Not sure how it happened other than I turned around and my feet seemed to be stuck on the floor at the time my body wanted to go the other way. Took about 3 steps trying to regain my balance and then the hard fall followed by my Apple watch screaming Fall Detected, calling 911. I was more concerned about trying to cancel the call than I was seeing my glasses laying next to me with bent frames and a lens that popped out. Spent the morning cleaning the blood off of the floor and trying to stop the bleeding with gauze and bandages. Tried to see my local family clinic but they told me because I was on blood thinners I had to go to the ER and I'm kind of glad they did now.

Back to the balance exercises and maintaining mobility!

@ray666 That was yet another thought I had… how would emergency workers get in if you’re unable to give them the code to get in? I very often leave public bathroom doors unlocked because I’d rather have people be able to get in quickly to help me in an emergency vs the shock of somebody walking in on me while I’m trying to quickly do my business. But I’m really not keen on leaving house doors unlocked!