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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.

tonyalgann | @tonyagann | Mar 13, 2018
In reply to @johnbishop "Just read an interesting article in the Science Daily - Gluten-free diet may help people with..." + (show)
@johnbishop

Just read an interesting article in the Science Daily - Gluten-free diet may help people with neuropathic pain.

-- https://www.sciencedaily.com/releases/2018/02/180228160432.htm

John

Jump to this post

I will definitely check it out

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Mentor
Jim, Volunteer Mentor | @jimhd | Mar 14, 2018
In reply to @johnbishop "Just read an interesting article in the Science Daily - Gluten-free diet may help people with..." + (show)
@johnbishop

Just read an interesting article in the Science Daily - Gluten-free diet may help people with neuropathic pain.

-- https://www.sciencedaily.com/releases/2018/02/180228160432.htm

John

Jump to this post

@tonyagann

I had nerve puncture biopsies that gave my neurologist more information about my neuropathy, and an audio evoke test to check the time it takes for a message to get from my ears to my brain and brain stem.

My tests have indicated both autonomic and small fiber peripheral neuropathy.

Have you been tested for MS?

Jim

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gjnson | @gjnson | Mar 14, 2018

http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

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2 replies
gjnson | @gjnson | Mar 14, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

Jump to this post

http://www.walkjoy.com has a device which may help walking

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2018
In reply to @gjnson "www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as..." + (show)
@gjnson

http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

Jump to this post

Hi @gjnson, the WalkJoy device sounds similar to the Walkasins device. We had a speaker who was part of the design team talk with our Minnesota Neuropathy Association in July of 2017. Here are my notes from the meeting:

“Walkasins Helped Me Walk Again” -- Report from a patient with diabetic peripheral neuropathy

Dr Lars Oddsson, who first spoke to us in January 2016 shared the story about Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology is currently going through the regulatory process for medical devices under the FDA.

More information is available on their website: http://rxfunction.com/

John

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keeptrying | @keeptrying | Mar 15, 2018
In reply to @gjnson "www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as..." + (show)
@gjnson

http://www.walkjoy.com has a device to help with gait and balance. Has anyone here tried this as it may help enough to prevent atrophy.

Jump to this post

Thanks for the info. I shall look this up. Every little bit helps..

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

Jump to this post

Hello @wobblyone,

In July 2017 I went to a meeting at the Minnesota Neuropathy Association where Dr. Lars Oddsson shared the story about a patient with diabetic peripheral neuropathy who was the first test case for Walkasins, the first wearable sensory prosthesis to help balance and mobility in individuals with peripheral neuropathy. Sole inserts measure foot pressure and gentle tactile vibrations provide balance cues around the lower leg. The technology was going through the regulatory process for medical devices under the FDA but I think it's now in production. The story was amazing as the patient had not walked in almost a year and kept getting worse and worse. The special shoes gave him his life back.

More information is available on their website: http://rxfunction.com/.

John

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venki | @venki | Mar 15, 2018

Living with neuorlogical problem is hightly challenging. Today I coudln't walk as both my legs were painful which disturbed my routine work. I know very well that there is no medication for this. Poor blood circulation to legs & Ulnar neuropathy r the reasons.

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wobblyone | @wobblyone | Mar 16, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

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Hey Thanks John, This is exactly what i learn about - options for supplementing/ maintaining my abilities.  Have a good one. Bucky

REPLY
wobblyone | @wobblyone | Mar 16, 2018
In reply to @wobblyone "Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability..." + (show)
@wobblyone

Hello. I am suffering from a type of peripheral neuropathy that has significantly reduced my ability to walk/balance. It has resulted in relatively recent (3- 5 years) and rapid muscle atrophy and my decline is becoming more rapid. My doctor has not been able to identify a cause. I am interested in support options to stay as active as possible (and hopefully outdoors as much as possible) over time. I have been active and outdoors all my life, biking, kayaking, camping, running, skiing, etc. So I am looking for information on increasing/maintain by current functionality/mobility, groups that provide outdoor activities for disabled folks, etc. Due to the speed of my decline, I also would like information on what progression of mobility/ function of life support I might expect - i.e. cane, special sports opportunities (i.e people missing a leg skiing), transitioning to life in a wheelchair, etc. Thanks, WobblyOne

Jump to this post

Thanks, good to learn there a folks working on these issues.

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