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

Hi, Mike (@domiha)

Ah, yes, small dogs – and cats, which tend to be small (unless you've a panther) – they can be hazardous, yes, but they can also be instructive. I used to fuss at my cat ("Get out of the way!"), but now I see him as a PN coach, teaching me to be extra attentive as I pad about the house. His weaving about as I go has actually improved my balance surveillance skills, making me a "safer" walker. I've cometo regard small animals as PN helpmates (that's less true of gerbils 🙂 ).

Here's wishing you a pleasant Friday, Mike!
Ray (@ray666)

@bjk3
Be very careful clicking on anything that pops up on your computer. Most of the pop-ups will lead you to a scam and people trying hard to defraud you. Check out the McAffee scam and other scams that are going around. Never give someone that you don't know and trust, control of your computer or your IP address on your computer.

@carolynhughes75 You are absolutely correct and thank you for pointing that out. Ironically, an association I belong to sent out a similar advisory email this week, and they made the same observation about the number of scans going around. I did mention that I only clicked the box because it had the gear icon which is safe on Macs, but yowza, if ANY part of an email or dialogue box is unfamiliar, it's gone. I appreciate your concern and the time you took to bring this scamming stuff out for my - and others' - attention.
Have a safe weekend!

@ray666 I. agree with you on that, but,There is no sure trick and if you hear of on besure to check it out Good. I find a lot of folks I trust news casters and public figure we all know wouldn't lie to us saying things that are sure cures. The. Fbi Confirmed what I keep seeing the new AI videos are great sellers and the bigest lie there ever was and almost imposible proveit is a false advertisement. When I call to order some I ask a lot of questions. One I ask and what is you conection to elon or who ever is in. that video. when they say who you know it is a lie.who?? I hang up.because I have found a huge amount comes streight out of China. One is on a sure cure for nueorphy and if you call the company it'is from China. If you do fing one let me know. Have a nice day Ray

Hi, @quietriver

For a moment I wasn't sure you were replying to something I had said. I'm one of the last to suggest that someone go blindly browsing on the internet. 🙂 I'm what these days is known as a digital minimalist. I use a browser blocker to confine internet's availability to only a half hour midday. I use that half hour to collect any meaningful email and send any email that I have ready to send. When I'm done, I'm offline. When, for example, I might need some health-related info, I restrict my looking to only a few trusted sites (Mayo, of course, Johns Hopkins, Cleveland Clinic, and a very few others). I'm tough on myself in this way (browser blocker) for two reasons: (1) there's too much b.s. out there, and (2) I refuse to drown in information overload.

I'm with you 100% when you say (to and "shopping" online): Ask a lot of questions!

Have a wonderful weekend, @quietriver!
Ray (@ray666)

@ray666 I have found recently that the Chinese are Stealing patened merchandise a lot in the medical field. The sell the product here in. America using the paten owners same Sleves with Americans product name and and color.for about a third of the price and packaged it so you think an American company that owns the patened it was the seller. The only difference I saw in the packing was on one place the mane of the product was in smallrprint and the colors not as bright.

@ray666 Good morning Ray, I too have better days and then an off day. I feel like my off days are when I didn't sleep as well or when I have over done at work. Most people see me pushing my tool cart around and then they looked shocked when they see me walking with a cane. They have seen me for years and then ask, what happened to you when they see the cane. I show them my buried cane on my tool cart and explain that my tool cart does not do stairs to the roof tops. Many are those stairs a challenge for me, as I try to take everything I might need to work with, but there is always the job where I make repeated trips up and down for parts or unexpected problems. On those days that one job is all I can handle as I fatigue with multiple trips and the my left leg muscles contract, my leg jumps up and therefore I use the cane for balance because I cannot control my leg sometimes. That has more to do with my drop foot I think. I just don't let any of it stop me, yes it slows me down and days when I set more doing work orders allows my body to recoup from the hard days. For me sitting too long is not a good thing either. Being winter my calfs get cold, so I bought these knee braces and wear them around my calfs, a size smaller works. They are made in Korea with materials that warm your skin. Really helps as cold muscles get tight and that affects my walking. I don't know if others with p/n have same issues or not.

Good morning @lockmith

Like you, my off days seem tied to those days when I've not had a good sleep the night before. Today, for example, is one of those days: I had an interrupted sleep last night (had to get up and read for a half hour), and this morning––at least thus far––I'm feeling sluggish, not at my best. When I've had a good night's sleep, my mornings generally go well. That's why I believe I'm dealing with a cause & effect situation.

My friends, too, seemed a bit surprised when seeing me using a cane for the first time. These are friends who've, for the most part, known me for years, a daily runner who, on weekends, clicked off 10Ks, and, wherever there was one, would run a marathon. So some of those long-time friends look puzzled: "What's with the cane, Ray?" And most recently, I've encountered a few obstacles where even cane-totting was challenging. Just wait'll the same long-time friends see me gripping a walker. 🙂

Oddly enough, I find stairs––so long as there's a good sturdy banister––not especially challenging. It's "flats" that I can find challenging, even old sidewalks where the pavement squares are up, down, up, down, like some poorly carved jigsaw puzzle where the individual tiles down quite fit. Now stairs where there's no banister? That's a different story. I've stopped going to certain theaters and concert halls where the thickly-carpeted stairs are wide and banister-less. Unless I've someone to cling to, I steer clear of such places.

I had a case of drop foot many years ago. It cleared up––or I think it did. I sometimes wonder if the drop foot was a precursor of today’s PN.

Ah, sitting too long! That's a biggie for me. I've had to alert certain friends who'll drop by for some coffee and an hour's chat that they needn't think I'm losing interest in their company of every 10 or 15 minutes I stand and wander about for a few minutes. For me, prolonged sitting doesn't make me cold (well, sometimes it does); it's knees: they tend to forget what knees are supposed to do. If I sit too long (more than a quarter hour), when I stand, my knees will be oblivious to what I'm counting on them to do and my legs will feel like warmed-up silly putty.

Here's to you having a good weekend!
Ray

I find I'm more afraid of falling. I use a cane rarely these days. Still have pain, mostly sharp & fleeting in various muscles. I had a SFN diagnosis confirmed with skin biopsy 4-5 yrs ago & was told there's nothing to do for it. I'm doing intense PT daily right now to try to get my right side stronger, and it's working! I just have to be consistent, and that's something I've always struggled with. Consistency.
I have a brain shunt that I may not have needed after all, according to my surgeon. Great.

Ray, since this disease entered my life six years ago it has affected every area of my life. I have been using a walker now for five of those years. I describe neuropathy like a train going down the tracks with no brakes. Each year it has progressed more. I’m at the point now where I feel happy and safe just staying home. To go out means receiving help with the walker and getting into the car. I tried flying to see my kids this past summer but even that was difficult. I need help to get to the baggage area because walking with my walker in the airport is just too much for me and enjoying my children’s homes brings a whole new problem just dealing with stairs. So yes, you are not alone with the feelings of becoming antisocial. I hate to ask for help. I was always an independent person and now I’m becoming comfortable with the new me. I love my condo and those wishing to see me know they are always welcome to visit. I have found other interests to keep me occupied. Life goes on and we have to make the best of it. I wish you well. Hope this makes you know you are not alone. Hugs