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.

@imagine1

Hi, Ray. I hope you'll post your neurologist's answers to your good questions - that would be very helpful to read. I'm going to check out the YouTube videos. Thanks!
-Dawn

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Hi, Dawn (@imagine1)

I will post what I learn from my podiatrist. My appointment is tomorrow morning. I am hoping that he has had some experience working with people with neuropathy. If he hasn't, I'm afraid my announcing that I have been diagnosed with idiopathic PN will catch him ill-prepared for answers.

Ray (@ray666)

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@ray666

Hello, @rca. Were you able to go on the Boston Harbor Cruise? I hope somehow you were able to. It sounded like such a wonderful event. –Ray (@ray666)

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No, I didn't go. I went to two events in mid May, one was commencement eve by Suffolk University as well. It was such a struggle to get rides that I felt very tired. When people go through health issues, it's nice to have family and very close friends, but friends run away when they have to deal with mobility issues or other health issues.

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@ray666

Hi, Dawn (@imagine1)

I will post what I learn from my podiatrist. My appointment is tomorrow morning. I am hoping that he has had some experience working with people with neuropathy. If he hasn't, I'm afraid my announcing that I have been diagnosed with idiopathic PN will catch him ill-prepared for answers.

Ray (@ray666)

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I had to return the New Balance walking shoes I bought because the heal and arches were too high. 1 1/4 " and no higher works for me.

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@rca

No, I didn't go. I went to two events in mid May, one was commencement eve by Suffolk University as well. It was such a struggle to get rides that I felt very tired. When people go through health issues, it's nice to have family and very close friends, but friends run away when they have to deal with mobility issues or other health issues.

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" … but friends run away when they have to deal with mobility issues or other health issues."

That is too often true! I have to admit to once being that sort of friend. A person with whom I worked for many years and with whom I became very close (luckily, he still is my friend) has macular degeneration as well as other medical issues. He's in his late 80s, lives alone, and doesn't drive. A half dozen of us (his friends) took turns taking him to his doctors' appointments. One by one, they made excuses and stopped taking him. I was the last and soon found myself making excuses, too. I'm not proud of that but am grateful that was several years ago, and I'm no longer that way. It seems what happens is the friends begin to see only the disability and no longer the person. I wish there were a way to change people's way of seeing their ailing friends.

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Does anything make the pains of neuropathy more severe?
So glad to find a place to chat. I have had neuropathy for 20 years. My grandfather had it and my uncle has it. (Non-diabetic) I knew that I was getting worse, so I moved to a town near family.
The pain became worse last night. There are sharp pains in my toes, again. And I noticed that the tingling is now above my knees. I can no longer walk or stand.

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@ray666

Hi, Dawn (@imagine1)

I will post what I learn from my podiatrist. My appointment is tomorrow morning. I am hoping that he has had some experience working with people with neuropathy. If he hasn't, I'm afraid my announcing that I have been diagnosed with idiopathic PN will catch him ill-prepared for answers.

Ray (@ray666)

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Hi, Dawn (@imagine1)

Did find my post after I returned from today's podiatrist visit? If not, and if you can't find it, let me know. In short, though, although he hadn't any new ideas – none that I hadn't already thought of – he was honest with me. All in all, I was pleased with the time I spent with him.

Ray (@ray666)

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@ray666

Hi, Dawn (@imagine1)

I will post what I learn from my podiatrist. My appointment is tomorrow morning. I am hoping that he has had some experience working with people with neuropathy. If he hasn't, I'm afraid my announcing that I have been diagnosed with idiopathic PN will catch him ill-prepared for answers.

Ray (@ray666)

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I have a prescription for physical therapy. I had back surgery and the N.S. says that the numbness should go away months from now. I use the exercise bike for an hour and then Tai Chi and then walking down the hallway back and forth. Nor comfortable going alone outside I have in the past. Need to learn to go up and down stairs. After my first back surgery, my neighbor (no longer living here) walked with me outside and up and down stairs, every day. All one needs is one person, not really a physical threrapist. Must move on to Tai Chi now. I don't like to look at a computer screen.

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@rca

I have a prescription for physical therapy. I had back surgery and the N.S. says that the numbness should go away months from now. I use the exercise bike for an hour and then Tai Chi and then walking down the hallway back and forth. Nor comfortable going alone outside I have in the past. Need to learn to go up and down stairs. After my first back surgery, my neighbor (no longer living here) walked with me outside and up and down stairs, every day. All one needs is one person, not really a physical threrapist. Must move on to Tai Chi now. I don't like to look at a computer screen.

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" I don't like to look at a computer screen."

That made me smile, Debbie. I, too, am a digital minimalist.

Have a good, good day, Debbie.

Ray (@ray666)

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Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.
— Elizabeth Edwards, attorney and activist

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Just keep on going...exercising, moving, being with people (or one person), and you'll improve.

Barb

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