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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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@pruea123 I very much appreciated all the responses I have received. Yours kind of summed up my thoughts. There probably isn't a cure, it is just another one, especially at 90, of the things one finds out about as one ages. I had a friend who was one year older than me, who often expressed to me that I haven't lived in his country yet. Well I am fast approaching his country and I hope to keep on treking for a while. I have had both knees replaced, the last one a little over a year ago. Same surgeon that did my other knee 6 years prior but it didn't go well and was the beginning of my instability. I have spinal stenosis, and thankfully a neurosurgeon said surgery wouldn't help. I have been active all my life and punished my body as and athlete, and have done a lot of mountaineering in New England and thousands of miles of boating. I have been married for almost 45 years after my trial marriage of 20 years. My wife is my advocate and has left no stone unturned. Her last attempt to help is a neuropathy specialist at John Hopkins in Baltimore. We will see how that goes My wife is 15 yrs. younger and still works full time. Beautiful day, wonderful wife who I love dearly, so life is good. Richard
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3 Reactions@heisenberg34 Hello! Good question. What exercises am I doing for balance? Until only a few weeks ago, I was working with a PT with whom I had been working for more than a year. He's since left Colorado, and I just started working with a new PT. With my old PT, we divided our sessions between balance work and strength training (chiefly for my legs). For balance work we did mostly the basics: one leg standing, tandem standing, playing catch, etc. We also did a lot of work using blaze pods. Are you familiar with blaze pods They tax your ability to turn right, left, turn about, all while maintaining good balance. Naturally, too, we'd go for walks outdoors; the PT would challenge me to not look down but look straight ahead (checking for obstacles on the ground, of course). On my own, I do some of the balance work in Carol Clements book, Better Balance for Life. My new PT is so new we've yet to develop a sessions routine, My very best to you! –Ray
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1 Reaction@hocbc I did refuse Gabapentin for what I have read about it. Instead, my primary doctor prescribed me Journavx and I am extremely satisfied; not pain or side effects at all.
@hocbc
Is Journavx Better Than Gabapentin? A Comprehensive Comparison
https://wellzrx.com/is-journavx-better-than-gabapentin-a-comprehensive-comparison
@richardrodgers
I am sorry that the acupuncture does not work for you. It is one of the few things that do work for me.
Perhaps a different clinician? They are all different and approach this practice differently. Might be worth a try.
Good luck.
I haven't given up on acupuncture. I have a great one and she also finishes my sessions with a massage.
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1 Reaction@oliverbowie Just a warning about Gabapentin. I tried it and had to stop, because my memory was adversely affected. My wife actually made an appointment to have me evaluated for memory lost. I took myself off the Gabapentin and within a few days I was back to normal. I know many people tolerate it well, but just FYI Richard
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2 Reactions@pruea123
Hello All who experience numbness in feet and ankles that also causes balance problems; uneven walkways and stairs without handrail are difficult to master. There is, at least in colorado a Construction regulation to mount a handrail if there are three or more steps to a front door and on walkways. This also applies to residential properties.
Using a skin moisturizing lotion that has aloe vera extract and cucumber helps me through the day when I apply generously apply the lotion and in case you dont have swollen feet thin socks can be pulled over the feet and that also retains moisture and some of the lotion which may 'diffuse' into the skin. Best wishes and betterment for all such situation(s).
@pruea123 I have the same problem and I’ve had it for approximately 20 years. I’ve had some luck with Lido patches but I can’t put one on every hour lol. The only thing I have found that really works is oxycodone and I really do not like going through life medicated. However I’ve had that radio frequency ablation on the offending nerve and that takes the pain away for many months. I do have a limited medical background and I do not understand what you think the risks are. I have had at least six of them. They are a godsend in my opinion because they can relieve the pain for so many months. Is there something I don’t understand? By the way I just feel sorry for another fellow soldier dealing with this! It’s a tough road
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2 ReactionsPlease check out my Youtube on Fall Prevention...it is about mindfulness of your environment and daily awareness of potential risk. I am a retired OT with neuropathy. I became aware of the increased risk of falling and have focussed on prevention. Mooretherapyfallprevention.com. There is a link to the video I have done for many organizations.
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