1. < Neuropathy
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.

bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @johnbishop "Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition..." + (show)
@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls - The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website - https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria - Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss - down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane - https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back - How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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John. Congrats on the weight loss!!!

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Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @LeeAase "Congratulations on your continued progress, John! It's exciting that you're at the point where you're ready..." + (show)
@LeeAase

Congratulations on your continued progress, John! It's exciting that you're at the point where you're ready to set a new, lower weight goal.

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Thanks Lee! My weekly weight chart looks like a bad EKG but then I have to realize it's not the day to day but overall pattern that I need to focus on. I have been trying to focus more on lowering the amount of carbs in my diet but I'm sometimes not aware of how many I'm taking in.

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1 reply
mayofeb2020 | @mayofeb2020 | Sep 11, 2020
In reply to @johnbishop "Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition..." + (show)
@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls - The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website - https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria - Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss - down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane - https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back - How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

Jump to this post

@johnbishop. Thanks John, I've just bought the book with the Google money i earned. I believe in good gut bacteria. I regularly eat kimchee and drink kombucher. My friend had been taking OTC stuff for decades due to acid reflux, he cut out diary and gluten and he's "cured". He lost over 40 lbs on intermittent fasting and sometimes he fasts a couple of days. He's also vegan. We were just talking about diets and various diseases. I don't think doctors talk to patients enough about their diets and lifestyle. Maybe as patients we need to be more proactive about that. My doctor, whom I'm leaving after this year, told my son he has some lengthy interesting discussions with me! Ha! Maybe because i don't always agree with him.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @johnbishop "Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition..." + (show)
@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls - The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website - https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria - Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss - down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane - https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back - How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

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@johnbishop John~you know how I feel about you! 😍 I am so happy you have shared your success story here with others. You, sir, deserve to be recognized for your tenacity, perseverance and wealth of knowledge -that you walk the walk on, not just talk the talk. Kudos to you my friend, our fearless leader! XOXO 👏🏼💪🏼
Rachel

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @johnbishop "Hi Rachel, I had a combo recumbent elliptical/bike exercise machine that was reasonable priced and worked..." + (show)
@johnbishop

Hi Rachel, I had a combo recumbent elliptical/bike exercise machine that was reasonable priced and worked great for both purposes but I recently upgraded and got a Teeter FreeStep LT1 because it is more of a crossfit trainer and better for upper arms, shoulders and legs. Also the leg motion is more closer to walking than using a standard elliptical machine. Teeter has a lot of great instruction videos for targeting different muscle groups on their website. I'm also thinking about one of their Fitspine inversion tables. I had a really old cheap one that I gave away because it was difficult to adjust and bring myself back upright.

A newer version of my old ProForm Hybrid Trainer - https://www.amazon.com/ProForm-PFEL03815K-Hybrid-Trainer/dp/B014IWD79G
The Teeter FreeStep LT1 - https://teeter.com/product/freestep-lt1/

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@johnbishop Cool! I will do some research on these also. Thanks John. I've never worked out a day in my life therefore I dont know how these machines will feel. Tough ordering something that you are unsure of how your body will work with it. Any suggestions? My plan is to size up the equipment at Mayo.

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1 reply
helennicola | @helennicola | Sep 11, 2020
In reply to @johnbishop "Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition..." + (show)
@johnbishop

Hi Toni @avmcbellar, The Foundation for Peripheral Neuropathy has a great list that talks about nutrition that you might find helpful.

Best Peripheral Neuropathy Diet | Foods To Avoid: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

What started me on the journey to eating more healthy as far as helping my small fiber PN was a book by Dr. Terry Wahls - The Wahls Protocol which she writes about her research to help her symptoms of MS. She really does have an amazing story of going from a wheel chair to being able to ride her bike again. More information is available on her website - https://terrywahls.com/

I've also been interested in learning more about health gut bacteria and started making my own special yogurt with a special type of bacteria - Lactobacillis reuteri. I found the Best Yogurt Ever on @LeeAase's My Health Journey blog which also got me started on alternate fasting for health and weight loss. I've done so well on the weight loss - down from 244+ in January to 216 this morning which is one pound from my goal of 215. I'm now planning to reset my goal to 200 to give me some wiggle room 🙂 Check out Lee's Best Yogurt Ever blog entry here where you can also find an entry for my trip down health lane - https://social-media-university-global.org/my-health-journey/

One of my saved bookmarks is a video that someone shared with me awhile back - How The Gut Microbiota Affects Our Health with Dr. Erica & Dr. Justin Sonnenburg

Jump to this post

Hi John, congratulations on your weight loss which is no mean feat! Fasting is so good for your brain and body. Coincidentally, I just ordered the same bacterial strain probiotic which is supposedly good for anxiety. How do you get the bacteria to add to your yogurt? I also want to thank you for all your research and supplied info links, I know many of us have benefited greatly. 😁

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @rwinney "@johnbishop Cool! I will do some research on these also. Thanks John. I've never worked out..." + (show)
@rwinney

@johnbishop Cool! I will do some research on these also. Thanks John. I've never worked out a day in my life therefore I dont know how these machines will feel. Tough ordering something that you are unsure of how your body will work with it. Any suggestions? My plan is to size up the equipment at Mayo.

Jump to this post

Hi Rachel @rwinney, I'm not sure what the Mayo pain rehab center has for equipment but I'm sure it's the top of the line $$ stuff. They had one that is similar in function at the small Mayo Family Health Clinic where I went for my PT sessions for helping with my lower back and posture problems. I believe it was a NuStep similar to this one - https://www.usmedrehab.com/products/nustep-t4r-recumbent-cross-trainer. The Teeter has basically the same motions and you can turn the settings down where it's very easy to move with your arms and legs...and it's much cheaper 🙂

REPLY
1 reply
Lee Aase | @LeeAase | Sep 11, 2020
In reply to @helennicola "Hi John, congratulations on your weight loss which is no mean feat! Fasting is so good..." + (show)
@helennicola

Hi John, congratulations on your weight loss which is no mean feat! Fasting is so good for your brain and body. Coincidentally, I just ordered the same bacterial strain probiotic which is supposedly good for anxiety. How do you get the bacteria to add to your yogurt? I also want to thank you for all your research and supplied info links, I know many of us have benefited greatly. 😁

Jump to this post

Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get it on Amazon.

And you also should check out John's story, which he contributed to my blog. https://social-media-university-global.org/2020/08/john-bishops-journey/

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 11, 2020
In reply to @johnbishop "Hi Rachel @rwinney, I'm not sure what the Mayo pain rehab center has for equipment but..." + (show)
@johnbishop

Hi Rachel @rwinney, I'm not sure what the Mayo pain rehab center has for equipment but I'm sure it's the top of the line $$ stuff. They had one that is similar in function at the small Mayo Family Health Clinic where I went for my PT sessions for helping with my lower back and posture problems. I believe it was a NuStep similar to this one - https://www.usmedrehab.com/products/nustep-t4r-recumbent-cross-trainer. The Teeter has basically the same motions and you can turn the settings down where it's very easy to move with your arms and legs...and it's much cheaper 🙂

Jump to this post

Alrighty, thanks!

REPLY
helennicola | @helennicola | Sep 11, 2020
In reply to @LeeAase "Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get..." + (show)
@LeeAase

Hi Helen - it's linked in this post that describes making the yogurt. https://social-media-university-global.org/2020/05/best-yogurt-ever/ I get it on Amazon.

And you also should check out John's story, which he contributed to my blog. https://social-media-university-global.org/2020/08/john-bishops-journey/

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Hi Lee, Thanks for the links, I have been following John’s posts for a few years now and am grateful for all of his research. I am not really interested in making my own yogurt, was just curious; I prefer going the supplement route! ☺️ Helen

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