Apparatus for Neuropathy

Posted by rwinney @rwinney, Jan 4 5:24pm

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

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

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I've used electric shopping carts in several large stores. I've also had a couple that drained the charge far from the car parking area.

It's amazing to me how invisible I became with people who walked out of a side aisle, and see me there and walk right in front of me. I've gotten the look of "I don't see anything that might cause me to need the cart." I found it quite difficult to get around in a clothing department because the racks are so close to each other.

But what a blessing to find one on my most pain filled days.

Chairs or benches at the front of the store could loosely qualify as apparatus so I can sit down while my wife finishes her shopping.

Jim

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@maryv449

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

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Thank you @maryv449 for sharing this video. It is especially for the feet and has some good "moves".

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@jimhd

I've used electric shopping carts in several large stores. I've also had a couple that drained the charge far from the car parking area.

It's amazing to me how invisible I became with people who walked out of a side aisle, and see me there and walk right in front of me. I've gotten the look of "I don't see anything that might cause me to need the cart." I found it quite difficult to get around in a clothing department because the racks are so close to each other.

But what a blessing to find one on my most pain filled days.

Chairs or benches at the front of the store could loosely qualify as apparatus so I can sit down while my wife finishes her shopping.

Jim

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Jim – I would like to refer to myself then as the "older gent" sitting in front on bench waiting for my wife (whomever is my driver that day). Haha! Got my handicap parking permit months ago, trying to work smarter not harder, but my body has so much pain that it's extremely limiting. From limited driving to no driving. Limited walking to virtually no walking. I definitely agree that benches are indeed apparatus and are life savers right along with the electric carts and handrails.

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@maryv449

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

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Thank you Mary. Unfortunately these stretches cause pain for my ankles, shins, calves and foot however, I am able to enjoy gentle myofascial release. I bet for certain though someone else will benefit from this video. Thanks again!

Liked by Leonard

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@rwinney

Jim – I would like to refer to myself then as the "older gent" sitting in front on bench waiting for my wife (whomever is my driver that day). Haha! Got my handicap parking permit months ago, trying to work smarter not harder, but my body has so much pain that it's extremely limiting. From limited driving to no driving. Limited walking to virtually no walking. I definitely agree that benches are indeed apparatus and are life savers right along with the electric carts and handrails.

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What I really don't get is even as good as any pain relievers may be (hydro, CBD, THC) they each bring certain types of relief but none allow my legs the speed or mobility they used to have. Not even a miniscule fraction of normalcy. Explain this to me. Even if they are numb and virtually pain free I still can only shuffle along and they don't want to carry me period. I dont know. I ask all of you for your experiences in hopes I can understand real life happenings. I understand the medical science in all of this but dont know if I should pursue more aggressive treatment like plasmapherisis or IVIG.

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@rwinney

What I really don't get is even as good as any pain relievers may be (hydro, CBD, THC) they each bring certain types of relief but none allow my legs the speed or mobility they used to have. Not even a miniscule fraction of normalcy. Explain this to me. Even if they are numb and virtually pain free I still can only shuffle along and they don't want to carry me period. I dont know. I ask all of you for your experiences in hopes I can understand real life happenings. I understand the medical science in all of this but dont know if I should pursue more aggressive treatment like plasmapherisis or IVIG.

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@rwinny
Hi,
It’s been many years since I’ve had the debilitating pain where I could walk only short distances. One day I went to the doctor for pain for another reason and she prescribed me fentanyl. It helped my feet Neuropathy and I was able to walk substantially farther. The pain in my feet has improved and now for the most part they feel numb which is still uncomfortable but nothing like it was. It took many many years to notice the improvement but hopefully you’ll get to the point where I’m at one day. Stay positive, hard as that may be.
Good luck,
Jake

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@jakedduck1

@rwinny
Hi,
It’s been many years since I’ve had the debilitating pain where I could walk only short distances. One day I went to the doctor for pain for another reason and she prescribed me fentanyl. It helped my feet Neuropathy and I was able to walk substantially farther. The pain in my feet has improved and now for the most part they feel numb which is still uncomfortable but nothing like it was. It took many many years to notice the improvement but hopefully you’ll get to the point where I’m at one day. Stay positive, hard as that may be.
Good luck,
Jake

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You're sweet Jake and I appreciate your sharing. I will continue to keep hope alive. Am thinking however it may be time again for new testing to rule out any other forms of neuropathy or auto immune disease which may help explain my loss of legs. I hate to settle when things just don't sit right with me. All the best Jake. Good to hear from you and thsnks again.
Rachel

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@rwinney

Jim – I would like to refer to myself then as the "older gent" sitting in front on bench waiting for my wife (whomever is my driver that day). Haha! Got my handicap parking permit months ago, trying to work smarter not harder, but my body has so much pain that it's extremely limiting. From limited driving to no driving. Limited walking to virtually no walking. I definitely agree that benches are indeed apparatus and are life savers right along with the electric carts and handrails.

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@rwinney I've had a placard for a few years now. Even so, the handicap spaces are often full. They can save a big percentage of the number of steps I have in me.

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@rwinney

Jim – I would like to refer to myself then as the "older gent" sitting in front on bench waiting for my wife (whomever is my driver that day). Haha! Got my handicap parking permit months ago, trying to work smarter not harder, but my body has so much pain that it's extremely limiting. From limited driving to no driving. Limited walking to virtually no walking. I definitely agree that benches are indeed apparatus and are life savers right along with the electric carts and handrails.

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@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

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@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

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@maryv449

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

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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!).

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@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

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@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

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@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.

Liked by HankB

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@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

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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

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