Apparatus for Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jan 4, 2020

Staying on track with my new year mentality, I succumbed to a motorized cart for the firat time today in Target. Instead of being reclusive and housebound, I gave myself an opportunity by using a cart. My thought and question for you all is...considering my slow dragged out progression down hill, I'm left wondering when and how will it stop? Do any of you with SFPN use apparatus for walking due to your neuropathy? Has anyone ended up being wheel chair bound from neuropathy or the reversal, had their legs come back from such damage? Thank you for anything you are willing to share.
Rachel

Interested in more discussions like this? Go to the Neuropathy Support Group.

@rwinney Hi Rachel, First and foremost, I want to congratulate you for venturing out to Target and using the apparatus they have for you. I think that will help you to feel like a person again. Of course, us people, with our vanity, have trouble with thoughts of wheel chairs, walkers, etc. I think about this all the time. If is go shopping at TJ Maxx for about an hour or less, I come home, and my feet are so weak and throbbing from walking. I have also gone there to buy something, and did not have foot strength to even go in the line and pay for it. I think the only way we really know what is going on is to have an EMG-NCV test every few years, and a complete neuro work up, from head to toe. Let the neurologist hammer, tap, prick, etc., to find how your body is working. Let the doctor tell you, as best he knows, how you are progressing, or not progressing. My PCP tells me that exercises for the feet do not help the neuropathy much at all. However, any cardio and anaerobic exercise I can do, helps to keep my body strong in general. I am not sure any person knows for sure, the progression of disease. I think the more we do, the better we feel, in the long run. However, this is easier said, than done. Sometimes my feet are so damn weak that exercise becomes impossible. I am kind of physically lazy, by nature, which adds to the mix. I wish I had answers to your question. Nothing is for sure. But I do know, that we must stay vital, as best we can, and in all ways. You just try to keep that New Years spirit. Envision yourself in your lovely dress for your son's wedding. Strive. We cannot totally give in to this struggle. Girls generally like to shop. Many of them! Keep trying! Keep doing! We are alive, and we must! Lori

REPLY
@maryv449

https://youtu.be/loUuq7rPTH0, here are some exercises for peripheral neuropathy and see if they help.

Jump to this post

Thank you so much for sharing this video! The beauty is that she shows how to do each one, explains the benefits of the movement, and encourages to be gentle (reminded me of yoga!).

REPLY

@rwinney, chris, etc.etc. - anyone ever read Dr. Norman Doidge’s “The Brain’s Way of Healing”? It deals with the science of neuroplasticity and is written in laymen’s terms. I have not as yet, still waiting for a copy I ordered on Amazon. The reviews sound very interesting so I thought I would post an FYI. Helen

REPLY
@helennicola

@rwinney, chris, etc.etc. - anyone ever read Dr. Norman Doidge’s “The Brain’s Way of Healing”? It deals with the science of neuroplasticity and is written in laymen’s terms. I have not as yet, still waiting for a copy I ordered on Amazon. The reviews sound very interesting so I thought I would post an FYI. Helen

Jump to this post

@helennicola -- I bought the book and started reading it. I got through about half of the book and liked what I read but my mind was elsewhere so I sent it to my cyber friend Teresa @hopeful33250. I'm not sure she has read it yet but hopefully she can add her thoughts. I liked his writing style, very easy to read and comprehend.

REPLY
@helennicola

@rwinney, chris, etc.etc. - anyone ever read Dr. Norman Doidge’s “The Brain’s Way of Healing”? It deals with the science of neuroplasticity and is written in laymen’s terms. I have not as yet, still waiting for a copy I ordered on Amazon. The reviews sound very interesting so I thought I would post an FYI. Helen

Jump to this post

Thank you @helennicola. I have similar reading challenges as @johnbishop does. I did read some excerpts. Was this the author that wrote about “Tapping”? We have sunshine today. Yipee! Find some joy. Chris

REPLY

Here’s an interesting video of the Brain’s Healing Way.

REPLY
@artscaping

Thank you @helennicola. I have similar reading challenges as @johnbishop does. I did read some excerpts. Was this the author that wrote about “Tapping”? We have sunshine today. Yipee! Find some joy. Chris

Jump to this post

Hi Chris, no, I believe he has only written this and another book
previously. I had tried reading another book on neuroplasticity a few years
ago but gave up due to it being so technical. It is amazing what our brain
is capable of and the connection it has to our body. Now if we could only
put some of that knowledge to good use! Helen

REPLY
@jimhd

@rwinney Have you been tested for autonomic neuropathy? The neuro specialist at Oregon Health Sciences Hospital confirmed the diagnosis of small fiber polyneuropathy that the local neurologist had already diagnosed. But they observed the early stages of autonomic neuropathy, which could likely explain a number of problems I have. Sometimes I lose my balance, when I stand up or turn left or right when I'm just beginning to move, diplopia, swallowing problems, reflux, tinnitus, sudden loss of knee muscles that puts me on the ground, ED, sudden urinary urgency, and feeling off balance when I'm walking and look at the ground in front of me or when I walk up or down the aisle at church. The floor tapers like a theater. And because of the taper, when I stand it puts the pressure on the balls of my feet, so I stay seated because the worst pain is in the balls of my feet. When I stand up and turn to go up the aisle I have to make myself pause and hang on to the back of my chair. I failed to be careful one time and suddenly sat down in someone's lap. Oops!

For me, it's important to know what's happening in my body. If I can understand it, it seems to reduce the stress and fear.

Jim

Jump to this post

Thank you Jim. Your examples are clear and very helpful. I've given it thought lately and naturally, have been researching. I've had some odd happenings such as swallowing problems (food sticks and it takes a few swallows or drink to get it down), hurrying to the bathroom (urine only) and muscle weakness. Thanks for bringing up your symptoms or I would have forgotten the swallowing trouble as it hasn't happened in a couple weeks. So bizarre how some things come and go, heighten and fade, others are permanent No rhyme, no reason. Certainly gives meaning to take each day as it comes.
Hope your day has gone well today.
Rachel

REPLY
@jimhd

@rwinney Have you been tested for autonomic neuropathy? The neuro specialist at Oregon Health Sciences Hospital confirmed the diagnosis of small fiber polyneuropathy that the local neurologist had already diagnosed. But they observed the early stages of autonomic neuropathy, which could likely explain a number of problems I have. Sometimes I lose my balance, when I stand up or turn left or right when I'm just beginning to move, diplopia, swallowing problems, reflux, tinnitus, sudden loss of knee muscles that puts me on the ground, ED, sudden urinary urgency, and feeling off balance when I'm walking and look at the ground in front of me or when I walk up or down the aisle at church. The floor tapers like a theater. And because of the taper, when I stand it puts the pressure on the balls of my feet, so I stay seated because the worst pain is in the balls of my feet. When I stand up and turn to go up the aisle I have to make myself pause and hang on to the back of my chair. I failed to be careful one time and suddenly sat down in someone's lap. Oops!

For me, it's important to know what's happening in my body. If I can understand it, it seems to reduce the stress and fear.

Jim

Jump to this post

No I have not been tested yet. I see my Neurologist Wed and have my list ready!

REPLY
@lorirenee1

@rwinney Hi Rachel, First and foremost, I want to congratulate you for venturing out to Target and using the apparatus they have for you. I think that will help you to feel like a person again. Of course, us people, with our vanity, have trouble with thoughts of wheel chairs, walkers, etc. I think about this all the time. If is go shopping at TJ Maxx for about an hour or less, I come home, and my feet are so weak and throbbing from walking. I have also gone there to buy something, and did not have foot strength to even go in the line and pay for it. I think the only way we really know what is going on is to have an EMG-NCV test every few years, and a complete neuro work up, from head to toe. Let the neurologist hammer, tap, prick, etc., to find how your body is working. Let the doctor tell you, as best he knows, how you are progressing, or not progressing. My PCP tells me that exercises for the feet do not help the neuropathy much at all. However, any cardio and anaerobic exercise I can do, helps to keep my body strong in general. I am not sure any person knows for sure, the progression of disease. I think the more we do, the better we feel, in the long run. However, this is easier said, than done. Sometimes my feet are so damn weak that exercise becomes impossible. I am kind of physically lazy, by nature, which adds to the mix. I wish I had answers to your question. Nothing is for sure. But I do know, that we must stay vital, as best we can, and in all ways. You just try to keep that New Years spirit. Envision yourself in your lovely dress for your son's wedding. Strive. We cannot totally give in to this struggle. Girls generally like to shop. Many of them! Keep trying! Keep doing! We are alive, and we must! Lori

Jump to this post

I'm trying, I'm trying. Your support is truly welcomed and very much appreciated! Thank you.

REPLY
Please sign in or register to post a reply.