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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@kwfinnie

Hello Dear Helen, Thank you for the note. I have advanced neuropathy which greatly impacts my balance. Has any tried a machine one stands upon and the machine exerts a busy buzz...so appreciate your note...I am 74,

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Welcome @kwfinnie, My balance is not that great either. I try to be extra careful when I first stand up and take a few steps, especially in the winter time. I've tried a TENS unit that kind of feels like a buzzing when it's zapping your feet but it didn't help me much. I only have numbness with my neuropathy. There is a discussion where other members have discussed ways to help with keeping your balance -- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Are you able to share a little more about how long you have had neuropathy and what your symptoms are?

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@johnbishop

Welcome @kwfinnie, My balance is not that great either. I try to be extra careful when I first stand up and take a few steps, especially in the winter time. I've tried a TENS unit that kind of feels like a buzzing when it's zapping your feet but it didn't help me much. I only have numbness with my neuropathy. There is a discussion where other members have discussed ways to help with keeping your balance -- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Are you able to share a little more about how long you have had neuropathy and what your symptoms are?

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I was first diagnosed with diabetic neuropathy in 1992. I am having quite a bit of trouble with losing my balance recently. I use a cane and am wondering if I maybe should change to a walker.

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@sandik74

I was first diagnosed with diabetic neuropathy in 1992. I am having quite a bit of trouble with losing my balance recently. I use a cane and am wondering if I maybe should change to a walker.

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Hi @sandik74, Welcome to Connect. I use a walker at night when I have to get up to use the bathroom. I use because it gives me a little more confidence when I'm not quite awake. If you don't have the confidence in using the cane it might be something to think about. You might also be interested in the following discussion:

-- Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/

A few years ago at a Minnesota Neuropathy Association meeting we had a presentation of a new product called Walkasins being developed for people with diabetic neuropathy. One of the research scientists that was involved was from John Hopkins. The product is now available and looks like it could be useful for some people with balance issues that are unable to walk. More info here - https://rxfunction.com/our-product/

Have you discussed using a walker with your doctor or tried any physical therapy or exercises to help improve your balance?

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Hello ~ Has anyone tried the Walkasins device? Has it helped you and how? Thank you.

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@retired123

Hello ~ Has anyone tried the Walkasins device? Has it helped you and how? Thank you.

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@retired123, Correction to my post above - the research scientist that gave us a presentation on the new product at the time was Lars Oddsson, PhD associated with Boston University (https://cse.umn.edu/tli/lars-oddsson-phd). Here's a really good review and patient's perspective. Hopefully any members that may be using it will respond also.
https://youtu.be/qQ7G1XXwhPk

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Thank you for allowing me to join

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I recently got diagnosed with neuropathy and put on Lyrica

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@clou4516

I recently got diagnosed with neuropathy and put on Lyrica

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Welcome to Connect @clou4516, I'm glad you found us. Connect is a great place to ask questions and share your experience and what helps you. You might also be interested in the follwing discussion to learn what other members have shared:

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Do you mind sharing a little more about your neuropathy diagnosis and your symptoms?

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@retired123

Hello ~ Has anyone tried the Walkasins device? Has it helped you and how? Thank you.

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I have PN due to spinal issues, numbness, tigling, weakness right lower leg, impaired balance, some difficulty walking.I read about the Walkasins on the PNF website, called the company, found out the closest practice I could be evaluated at (2 hrs away), made the appointment and went to be evaluated. The evaluation went well, the PT attached the Walkasins and off I went. There is a small zap as you walk along, but I couldn’t determine any improvement. The PT said outright- “You need a gait analysis”. I was scheduled at a different clinic. The gait analysis is done with special shoe inserts that send info to a computer the PT manages. There were all sorts of graphs- very interesting. That PT said I needed adaptive shoes. I googled “Dick’s Sporting Goods” near me, went and bought a pair of Brooks, brought them back to the practice, and came back when they were done. It was like a miracle! I was landing flat without any push-off on that foot, he embedded a metal rocker which gives me a mechanical push-off. It’s like night and day walking now- much more stable, much less effort.

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@centre

I have PN due to spinal issues, numbness, tigling, weakness right lower leg, impaired balance, some difficulty walking.I read about the Walkasins on the PNF website, called the company, found out the closest practice I could be evaluated at (2 hrs away), made the appointment and went to be evaluated. The evaluation went well, the PT attached the Walkasins and off I went. There is a small zap as you walk along, but I couldn’t determine any improvement. The PT said outright- “You need a gait analysis”. I was scheduled at a different clinic. The gait analysis is done with special shoe inserts that send info to a computer the PT manages. There were all sorts of graphs- very interesting. That PT said I needed adaptive shoes. I googled “Dick’s Sporting Goods” near me, went and bought a pair of Brooks, brought them back to the practice, and came back when they were done. It was like a miracle! I was landing flat without any push-off on that foot, he embedded a metal rocker which gives me a mechanical push-off. It’s like night and day walking now- much more stable, much less effort.

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Thank you for the info. Was any of this covered by insurance? Was the PT specialized in neuropathy? Was this a specialized clinic? I need to give this a look see!

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