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

Hi, John

I've been using your advice, suggesting places where the in & out are less challenging for folks with bad balance, and, happily, my friends are almost always quick with good suggestions. I've this one buddy with whomI've been doing Wednesday afternoon coffee dates for going on 10 years. In my pre-PN days, we'd try different coffee shops, roaming the metropolitan area. When my PN became an "issue," I asked my buddy if we might confine our caffeine watering holes to only those with generous parking lots, few (or better yet, no) steps, tables widely spaced, etc. We've now narrowed down our Wednesday destinations to only those that meet those specifications to a T. So, definitely, suggesting places more welcoming of a fellow with PN is an excellent solution to a frustrating problem.

Cheers!
Ray

@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
Hi Ray,
Thank you for sharing. I'm where you are. Trying to make the best of life when I'm being slowly stripped of so much because of this insidious disease. It's nice to hear that others are not giving up on little bits of joy, like seeing friends and making a point of reaching out to them to find ways to make social activities possible. So after your post I think I'll make it a point to at least write to some people I enjoy being with and know that they would like to hear from me. I've been hiding out pretty much all of 2025. I was hospitalized 5 times and aside from the exhausting experience, my PN has also gotten worse with added hand tremors and such which make me feel less than able to socialize. I need to give it a go though and see how I feel about getting out of my shell. Slowly. I'll try to keep up with everyone's posts. Be well.
Betti

@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!

Hi, Betti (@vasilikisimpson)

Keping up with one's friends takes real work, especially when one has a condition that makes one more and more housebound. I never thought losing touch with friends would be true of me, but in the past few months I've become aware that it has. My primary doc, knowing that I'd lost my partner a few months back, suggested I talk to a grief counselor. At first I thought, Naw, I don't need that! But my doc was persuasive––and I'm glad she was. I'll be talking with a CBT counselor this coming Wednesday. In preparation, I've been making notes of my "issues." One issue I hope to discuss is "emergence," how to return to being a player in the game of life. I believe it is supremely important, taking into consideration the limitations of one's disability, to keep one's life chugging along as near to the way it once was for as long as possible.

My very best wishes to you, Betti!
Ray (@ray666)

@ray666
Hi Ray,
I think it's a wonderful idea to speak with a counselor. I'm very sorry to hear of your loss. I have a therapist I speak with regularly and it helps. I do have a lot to say every time we meet. She helps with processing my grief over the complxities of this disease and of course my limitations. We work on accepting and rewarding one self for every little step forward. Good luck with the new step you're taking. I believe you'll benefit from it!
All the best,
Betti

@centre
I can sympathize with you. I had a couple of falls. the most severe and worse, was at my son's residence. It was a hard landing, no injury. A piece of his furniture was totally damaged and my son helped me up. Embarrassed, realization kicked in that, things aren't the same anymore. That event was hard on me and coming to terms with my disability that didn't have a major impact on my daily activities initially because of my isolation from the public, which was avoided because, contracting Covid-19 again was unthinkable, but it happened later. You must understand a person like myself, with high blood pressure, was a Covid-19 target three to four times more likely before those who were not. My wife's relatives brought the virus with them from Europe in January/February 2020. They thought it was the flu according to their doctor at the time because, no one knew it was something else. My wife gave it to me, March 2020 and later that month, EMS wheeled me to the hospital ICU unit, unconscious. Where I remained hospitalized for almost 80 days.

Thank you, Betti. I'm looking forward to talking with the counselor. I know from my two "situations" (long-standing large-fiber PN, resulting in predominaely balance issues; and a sepsis infection, contracted in 2024, which only compounded those balance issues) how easy it is to "give up," to let the world you once enjoyed to gradually fade away. Aging alone can do that. Folks around ere know I'm often quoting choreographer Twyla Tharp. As Tharp writes, unless we make a determined effort not to let ithappen, as we age we find ourselves living in fewer and fewer rooms. When you add a disease like PN on top of aging, the rooms we find ourselves living in can become even fewer. // I'll let you now how Wednesday's meeting goes. Cheers! ––Ray (@ray666)

@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