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

@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.

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

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@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

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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

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@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

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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

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@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

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

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@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

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

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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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Thanks Helen!

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@rwinney

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

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Correction: I have been tested but last EMG/NCS was almost 3 years ago.

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@rwinney

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

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@rwinney

I saw a speech therapist a few years ago and had 2 different swallowing tests. I have to chew everything until it's puree, then swallow some and wait for it to clear the upper esophageal sphincter, then wait for it to clear the lower one. It took me 45 seconds to swallow a quarter inch piece of a shortbread cookie. Same for a piece of a french fry. Some things take longer and some seem just to slide on down. I find myself eating less because I get tired of the process, plus the food is cold long before I can eat it. An ENT doctor tested me and said that the movement at the back of my tongue is uncoordinated. So far, weight loss hasn't been a problem, but she warned me not to lose any more weight – I lost 60 pounds 3 years ago and I'm the size I was after college. But if I got sick and lost much weight, I'd be underweight. I'm near the bottom for my height, but I'm happy where I am.

I have an appointment with the urologist in February. I take Oxybutynin, the cheaper version of Myrbetric, and I don't have to go as often as I was, but I don't have much warning. When I feel the urge to urinate, I have 5 minutes at best. I've had to make quick stops when I'm driving, to find a bush. I'm afraid a cop will catch me at it one of these times.

The doctors can't tell me if any of the stuff is nerve related, only that it could be. The definitive answers are few and far between with regards to pn.

I met on Friday with the Abbott rep and he recalibrated my scs. I have 2 settings. The one that I'll usually have on is the Burst technology, which I don't feel. The second one is an adjustable one that I use for a little while at bedtime. It tingles from my thighs to my toes. I wouldn't want to have it set for that all the time, but it has a bit of a massage effect. My feet seem to hurt less after a session.

Life is complicated.

Jim

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@jimhd

@rwinney

I saw a speech therapist a few years ago and had 2 different swallowing tests. I have to chew everything until it's puree, then swallow some and wait for it to clear the upper esophageal sphincter, then wait for it to clear the lower one. It took me 45 seconds to swallow a quarter inch piece of a shortbread cookie. Same for a piece of a french fry. Some things take longer and some seem just to slide on down. I find myself eating less because I get tired of the process, plus the food is cold long before I can eat it. An ENT doctor tested me and said that the movement at the back of my tongue is uncoordinated. So far, weight loss hasn't been a problem, but she warned me not to lose any more weight – I lost 60 pounds 3 years ago and I'm the size I was after college. But if I got sick and lost much weight, I'd be underweight. I'm near the bottom for my height, but I'm happy where I am.

I have an appointment with the urologist in February. I take Oxybutynin, the cheaper version of Myrbetric, and I don't have to go as often as I was, but I don't have much warning. When I feel the urge to urinate, I have 5 minutes at best. I've had to make quick stops when I'm driving, to find a bush. I'm afraid a cop will catch me at it one of these times.

The doctors can't tell me if any of the stuff is nerve related, only that it could be. The definitive answers are few and far between with regards to pn.

I met on Friday with the Abbott rep and he recalibrated my scs. I have 2 settings. The one that I'll usually have on is the Burst technology, which I don't feel. The second one is an adjustable one that I use for a little while at bedtime. It tingles from my thighs to my toes. I wouldn't want to have it set for that all the time, but it has a bit of a massage effect. My feet seem to hurt less after a session.

Life is complicated.

Jim

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All I can say Jim ~ Is bless you for all that you endure! I think beneath all of your health issues lies a wild and crazy man who really enjoys the fun of falling into someone's lap at Church or peeing behind a bush. Haha! 😀

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