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.

@sunnyflower

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 😊

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Good luck with best wishes. I have settled for Neuroplasticity. It works and I have a high expectation of a final cure. Nil medication of any description.

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@user_che214927

Good luck with best wishes. I have settled for Neuroplasticity. It works and I have a high expectation of a final cure. Nil medication of any description.

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@che214927
There might be something to what you say.
I think I must have gone through it. My Neuropathy started between 35 & 45 years ago.
For many many years I had the burning, stinging, stabbing, throbbing, pins & needles pains but they eventually went away and numbness took over.
My personal belief is your expectations for a cure are overly ambitious. But who knows.
Good luck 👍
Jake

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@jakedduck1

@artist01
I think of breaking something too. I have osteoporosis from seizure meds. I just fell down the steps in the garage. Something hit my back but not like last time. A few weeks ago I was crawling around the house for 2 weeks. I didn’t think it was possible to fall when you’re crawling on your hands and knees but let me assure you it is.
Be safe,
Jake

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Hi Jake, do you mind telling me what type of seizure meds can cause osteoporosis? I've never heard of that. I have severe osteo but it's from my daily Prednisone and so many steroids over the years for my lungs and inflammatory disease and have been on Gabapentin for the last 1.5 years for my neuropathy which as you know is a seizure medication. Hope you are well. Many blessings, Sunnyflower

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@sunnyflower

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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I have a quad cane and a regular cane. Sad to say I’m old fashioned and go with the regular cane time. lol mainly because I’m short and the quad would not adjust short enough for me. But I liked it well enough except for that!

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@sunnyflower

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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Thank you! You as well!

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@jakedduck1

@artist01
I think of breaking something too. I have osteoporosis from seizure meds. I just fell down the steps in the garage. Something hit my back but not like last time. A few weeks ago I was crawling around the house for 2 weeks. I didn’t think it was possible to fall when you’re crawling on your hands and knees but let me assure you it is.
Be safe,
Jake

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Gosh Jake. We have so many challenges! You must be one tough customer not to have broken something by now, with all those falls you've had. Please do be careful! We care! ❤ Laurie

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@sunnyflower

Toni, what is the best way to cook baby spinach? I'm trying to incorporate it into my diet. It shrinks up so much! How much should it cook and keep it's nutrients? Like it's already small leaves but how much smaller is done? I know steaming is the best and I've cooked them in a pan after I take the salmon out so there is a little EVOO, a tad butter, some melted salmon fat and all my seasonings which flavor it nicely b/c I don't like the taste. I get rid of most the fat. I use Old Bay Seasoning, Tarragon (never enough LOL!), and garlic w/ parsley. I think I've been over cooking it both ways. A big tub shrinks to almost nothing and 1/2 of it is about 17 calories not counting any fat it's cooked in. We've even pressure cooked it in our InstaPot. I didn't think something that delicate should be pressure cooked but they had us put 2 cups (was too much) of water and then it sat on a steamer thing. MMMmmmm.
Thanks and take care, Sunnyflower

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Hi Sunny, i like to eat spinach in raw form by adding a small amount in a salad. I sometimes add it raw to an already boiled soup. It won’t take long to wilt in the hot soup. Have you tried using raw spinach as one of the ingredients in a smoothie? That can be a meal in itself. I use the internet to find recipes to try. Find one you like the ingredients. There are many using healthy fruits and veggies like kale or even avocado. Make what you can tolerate. Good luck! Toni

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@sunnyflower

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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@sunnyflower there are 2 different quad canes. As the name implies a quad cane has four feet at the bottom and therefore can stand on its own. It can have a wide base where the feet are further apart to cover a bigger surface area on the ground or the base can be narrower to cover a smaller surface area. I have both. The narrow base I use for short walking distances within a parking area and store or the wider base I use outside my home to cover a bigger surface when walking on the lawn or graveled driveway. I believe the wider base helps with my walks on uneven surfaces better.
As for the transport chair it is basically like a wheel chair with the difference of someone having to push the transport chair. It has 4 wheels to cover most terrain. For lightness an aluminum frame is better and of course more expensive. I just picked one that provided the best features for what I wanted to use it for. I believe the aluminum frame chairs weigh about 20 pounds. I bought the lighter chair to make it easier on my husband or for the one who will be lifting or pushing the chair. Best of luck! Let me know if I can help with more info, Toni

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@sunnyflower

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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Sunny, if you need a motorized chair then the wheel chair will be for you. Find out what coverage you have with your medical insurance and if there are any limitations. I did with medicare and found out that it would be covered only if my doctor’s documentation
proved I needed the transport chair indoors when I could not wheel my self. Basically I was disappointed with medicare for not providing any help when I needed it for long distances outside. Where is the help when you need it? I purchased my chair through Amazon under a payment plan which made it more affordable.

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@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

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Hi @jakedduck1 I found walkers without wheels are more difficult to maneuver. They are meant for people with little mobility. Originally I used a walker with 2 front wheels and 2 sliders in the rear. I had more instances of tipping but luckily no falls. It was scary. Once I switched to the 4 wheel walker with the seat I had no near falls. It was a big help. From there I later learned to walk with a quad cane. Toni

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