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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.

sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @jakedduck1 "@sunnyflower Be cautious using a walker. I had one and trying to stand up and fell..." + (show)
@jakedduck1

@sunnyflower
Be cautious using a walker. I had one and trying to stand up and fell sideways and split my head on a table. When I tried to get up I fell again. It looked like a massacre took place in my living room. I suppose I felt overly confident with the walker. So be careful.
Take care,
Jake

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Hi Jake! Thanks for the warning. I'm so sorry to hear you fell twice! I have a 4-wheel one w/ a seat on it. Was yours the same? I do have proprioception and sounds like you may as well? Also, with that, the Gabapentin makes me off balance and almost falling all the time!!!! It's terrible! Be safe, Sunnyflower

REPLY
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @avmcbellar "Sunny, you can also use a wheelchair. It may be safer to use your arms to..." + (show)
@avmcbellar

Sunny, you can also use a wheelchair. It may be safer to use your arms to rotate the wheels and move around. You have worked in the medical field for 20 years. I am sure you will find the best way for you. Physical therapy taught me to use a quad cane for outdoors to manage uneven surfaces. I also have a transport chair for long distances to manage trails or events like fairs.

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Hi Toni, I 've never heard of a quad cane so will read about them. I but am very interested in your transport chair. I have looked at some online but have no idea what to look for and which is the best. I would love to have one to go to the fair. Warmest wishes, Sunnyflower

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1 reply
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @avmcbellar "Sunny, you can also use a wheelchair. It may be safer to use your arms to..." + (show)
@avmcbellar

Sunny, you can also use a wheelchair. It may be safer to use your arms to rotate the wheels and move around. You have worked in the medical field for 20 years. I am sure you will find the best way for you. Physical therapy taught me to use a quad cane for outdoors to manage uneven surfaces. I also have a transport chair for long distances to manage trails or events like fairs.

Jump to this post

Toni, I am far too weak to turn wheels on a wheelchair. I have steroid myopathy and am very weak. Aside from someone to lift a transport chair, you can be pretty independent in one right? Can they fit into a handicapped bathroom? They are motorized yes? Thanks so much, Sunny 😊🙏🤗

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2 replies
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @faithwalker007 "I can relate to that. I can barely stand for two minutes. I can’t sit, lie..." + (show)
@faithwalker007

I can relate to that. I can barely stand for two minutes. I can’t sit, lie down, or walk. My dog is the one who gives things for me. I have a cane, walker, and scooter. I have a chair I sleep in. All I want is to have one day without pain and am still dreaming about it happening.
I’ll wait for it or not but either way, I’ll survive.

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Dearest Renee, my heart is heavy reading about your pain. Please know that you are on my mind and in my heart and prayers. I wish for you zero pain and many blessings. Hang on dear sister. 🙏❤️🌹

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1 reply
Leonard | @jakedduck1 | Feb 17, 2021
In reply to @artist01 "Hi, I'm Laurie. New to this site today, but I've posted many times on other Mayo..." + (show)
@artist01

Hi, I'm Laurie. New to this site today, but I've posted many times on other Mayo sites. @jakedduck, your post about your walker accidents had me jumping to attention. I am a faithful walker user. My walker is my best friend. My main concern for all of us is, always, always, have your brakes on when you are about to use your walker.
When you fell, Jake, did you apply your brakes before you tried to get up? If not, the walker tends to swing away as you grab it, thereby causing a problem. Even when I'm using my walker in my apartment and make a short-lived stop, I always, always, apply my brakes. At my seniors' residence here, they drill that into our heads so it's an ingrained habit. If we ignore the brake-applying step when a staff member is present, they quickly scold "Put your brakes on!" This may sound elementary and even annoying (it IS!) but it made a believer out of me after I'd had a few misses when my un-braked walker swung away from me unexpectedly.
Once during that period, I did fall, and I literally couldn't get up until I was able to reach up and apply my brakes. Before the brakes were applied, I tried to use my walker to raise myself from the floor, and it just swung away from me. I hope my story might help someone from a walker accident. As I said, my walker is now my best friend!

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@artist01
Hi Laurie,
I have one of those walkers, it was my Mom's.
I don't use it. I rarely ever use a walker but when I do I use the aluminum frame type without wheels. Good advice about the breaks though. I walk okay most of the time, crooked but okay.
I do frequently fall but it's because of balance problems caused from seizure meds and comas.
When I fell I wasn't able to walk but I thought I would give it another try. Got up but just fell over.
Jake

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3 replies
sunnyflower | @sunnyflower | Feb 17, 2021

Hi Toni and Hank/Linda @jesfactsmon, please forgive if this is a repeat. I 've gotten some great advice about supplements here on Connect and recently joined ConsumerLab.com after learning about this site here too. I have been extremely impressed with the wealth of information and content they have on supplements and many more things. I believe I paid about $47 for the year but it's a little bit cheaper to buy a 2-year subscription. They send emails and I can't stop reading the many, many excellent, comprehensive subjects they report about. So far, it's been well worth the money!

Warmest wishes, Sunnyflower 😊🙏❤️

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2 replies
Barry Sheales | @user_che214927 | Feb 17, 2021
In reply to @sunnyflower "Hi Toni and Hank/Linda @jesfactsmon, please forgive if this is a repeat. I 've gotten some..." + (show)
@sunnyflower

Hi Toni and Hank/Linda @jesfactsmon, please forgive if this is a repeat. I 've gotten some great advice about supplements here on Connect and recently joined ConsumerLab.com after learning about this site here too. I have been extremely impressed with the wealth of information and content they have on supplements and many more things. I believe I paid about $47 for the year but it's a little bit cheaper to buy a 2-year subscription. They send emails and I can't stop reading the many, many excellent, comprehensive subjects they report about. So far, it's been well worth the money!

Warmest wishes, Sunnyflower 😊🙏❤️

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Sorry Sunflower, your money will be a down the drain investment. I have done extensive research, and even the hungry and exploited pharmaceutical companies admit to that much to their financial anguish.

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2 replies
Barry Sheales | @user_che214927 | Feb 17, 2021
In reply to @jakedduck1 "@artist01 Hi Laurie, I have one of those walkers, it was my Mom's. I don't use..." + (show)
@jakedduck1

@artist01
Hi Laurie,
I have one of those walkers, it was my Mom's.
I don't use it. I rarely ever use a walker but when I do I use the aluminum frame type without wheels. Good advice about the breaks though. I walk okay most of the time, crooked but okay.
I do frequently fall but it's because of balance problems caused from seizure meds and comas.
When I fell I wasn't able to walk but I thought I would give it another try. Got up but just fell over.
Jake

Jump to this post

Sorry to hear that Jake. Have you tried double walking sticks , with forearm clasps. The allow you to stars upright and walk as slow as you like with improved balance. Good luck and best wishes from Australia

REPLY
sunnyflower | @sunnyflower | Feb 17, 2021
In reply to @user_che214927 "Sorry Sunflower, your money will be a down the drain investment. I have done extensive research,..." + (show)
@user_che214927

Sorry Sunflower, your money will be a down the drain investment. I have done extensive research, and even the hungry and exploited pharmaceutical companies admit to that much to their financial anguish.

Jump to this post

Hi Barry! Long time no talk. How are you doing? I hope much, much better than tolerable. You know I never thought to investigate whether or not ConsumerLab.com is big pharma. This site came highly recommended by someone here on Connect who I know does their homework and much research as do I for the most part. So far there are so many different things they have extensive articles about besides supplements but health related. We'll see.
Thanks for reaching out, it's good to hear from you. Warmest wishes, Sunnyflower 😊

REPLY
1 reply
artist01 | @artist01 | Feb 17, 2021
In reply to @jakedduck1 "@artist01 Hi Laurie, I have one of those walkers, it was my Mom's. I don't use..." + (show)
@jakedduck1

@artist01
Hi Laurie,
I have one of those walkers, it was my Mom's.
I don't use it. I rarely ever use a walker but when I do I use the aluminum frame type without wheels. Good advice about the breaks though. I walk okay most of the time, crooked but okay.
I do frequently fall but it's because of balance problems caused from seizure meds and comas.
When I fell I wasn't able to walk but I thought I would give it another try. Got up but just fell over.
Jake

Jump to this post

Hi Jake. Thanks for your reply. And my goodness, please be careful. I'm so scared of breaking a hip, or worse. Thinking of you. Warm wishes, Laurie

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