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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

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raebaby | @raebaby | Dec 2, 2021
In reply to @helenwalker "Hi retired 123. My story is very similar to yours, but I developed this about seven..." + (show)
Profile picture for helenwalker @helenwalker

Hi retired 123. My story is very similar to yours, but I developed this about seven years ago, so am now further ahead in the disability. Walking is both difficult and exhausting, and now it has spread to my hands and arms. I send loads of emails each day, both to keep in contact with friends, but also, to keep my fingers moving. Loss of feeling and icy coldness are always present, including the tightness in ankles and feet. I also take supplements, but do not take any drugs as I seemed to take them on board very strongly and felt like a robot all day. I get unpleasant sensations rather than pain, and do find sleeping very difficult. I also exercise, and have a wonderful mobility scooter so that I can take our dog for walks and enjoy the fresh air, good for the soul. Love your alternate to medication - chocolate and chips!!! It is a most frustrating illness, and like you, I had to stop driving. However, I have a lovely daughter in law who is battling an aggressive cancer, and is so brave and positive, I feel I have nothing to complain about. We don't die from this do we - well, not for a long time anyway, and I think my age will be the deciding factor on that one! All good wishes to you and I do find reading other people's problems and thoughts very helpful, thank you.

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Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay on the floor on your back, put your ankles in it and it moves you in a serpentine motion. It increases circulation and loosens muscles. It was originally for my husband. With 2 weeks of use, I am able to walk better, I can actually kind of stride. They sell for a lot, but I found one for a friend at Mercari for $60 including shipping. If anyone buys one, a used one probably won't have instructions and I can tell you how to use it. I'm 80, I think it can help anyone.

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1 reply
Profile picture for kwfinnie
kwfinnie | @kwfinnie | Dec 3, 2021
In reply to @raebaby "Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay..." + (show)
Profile picture for raebaby @raebaby

Recently I dragged out my old Exerciser 2000 Elite. It is a machine where you lay on the floor on your back, put your ankles in it and it moves you in a serpentine motion. It increases circulation and loosens muscles. It was originally for my husband. With 2 weeks of use, I am able to walk better, I can actually kind of stride. They sell for a lot, but I found one for a friend at Mercari for $60 including shipping. If anyone buys one, a used one probably won't have instructions and I can tell you how to use it. I'm 80, I think it can help anyone.

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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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Mentor
John, Volunteer Mentor | @johnbishop | Dec 3, 2021
In reply to @kwfinnie "Hello Dear Helen, Thank you for the note. I have advanced neuropathy which greatly impacts my..." + (show)
Profile picture for kwfinnie @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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1 reply
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sandik74 | @sandik74 | Dec 3, 2021
In reply to @johnbishop "Welcome @kwfinnie, My balance is not that great either. I try to be extra careful when..." + (show)
Profile picture for John, Volunteer Mentor @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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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Dec 3, 2021
In reply to @sandik74 "I was first diagnosed with diabetic neuropathy in 1992. I am having quite a bit of..." + (show)
Profile picture for sandik74 @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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retired123 | @retired123 | Dec 4, 2021

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

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2 replies
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Mentor
John, Volunteer Mentor | @johnbishop | Dec 4, 2021
In reply to @retired123 "Hello ~ Has anyone tried the Walkasins device? Has it helped you and how? Thank you." + (show)
Profile picture for retired123 @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.

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clou4516 | @clou4516 | Dec 4, 2021

Thank you for allowing me to join

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clou4516 | @clou4516 | Dec 4, 2021

I recently got diagnosed with neuropathy and put on Lyrica

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Mentor
John, Volunteer Mentor | @johnbishop | Dec 4, 2021
In reply to @clou4516 "I recently got diagnosed with neuropathy and put on Lyrica" + (show)
Profile picture for clou4516 @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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