1. < Neuropathy

Best Car for Folks with Foot Pain

Posted by katec @katec, Jan 17, 2021

Hi Everyone!

My son is 16 and is still having severe pain on the bottoms of both feet 24 hours a day due to his SFN. We are finding that the cars we own (all being big SUVs) are very painful for him to press down on the pedals so it really limits how long he wants to drive. I was wondering if anyone out there with similar pain, has found that driving a regular car is a bit easier on your foot pain than a large older SUV? We were thinking of renting a car for a day or so to see if he noticed a difference but wanted to throw it out there to see if anyone had any suggestions? Thank you so much!

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Hank | @jesfactsmon | Jan 18, 2021

@katec
Hi Kate, I saw this discussion and was not previously aware of your son's situation. I am very very sorry to hear that someone so young has been stricken by this awful (understatement) affliction of peripheral neuropathy. This is a bit off of the topic of things which might facilitate his ability to drive. But I did think of a couple of things you might want to look into for your son if you have not already done so.

The first is something that might provide a small benefit in the way of some temporary relief for his burning feet. Linda, my wife, also has PN in her feet, which burn ferociously most of the time. Like many others we have tried quite a few different ideas we have heard about. One thing that has helped her a lot is a product called Penetrex. It is a homeopathic based product. I've recommended it a bunch of times, but here is the post where I first mentioned it (I think): https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=131#comment-395581

The other thing occurred to me when I was reading about how you and he were looking into stimulators, and that he tried a drg. I wondered if you had ever run across the idea of Calmare scrambler therapy? It was first developed by an Italian company and there are now a number of scrambler devices being used in the US. I had done a lot of reading about it 4-5 years ago. Rather than tell you about what it is, I will include a couple of links for you to look at. You can find a fair amount online about it. It apparently has helped some people a lot:
https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treating-neuropathic-pain/
https://www.scramblertherapy.org/false-myths.htm

I just thought this might be a good fit as a treatment for your son. Linda can't do it as she can't tolerate the travel; we are in the Nashville area and have not found one here, and she is too weak and pain impaired to go outside our area, but your son, being so young, might not have as much trouble. The devices are located here and there. Maybe there is one in Texas. The treatment itself takes 2 weeks and used to cost about $5000, but not sure how much now. I really feel for your son, and for you as his parent and guardian. What a nightmare! My heart is with you guys! Best, Hank

REPLY
1 reply
lorirenee1 | @lorirenee1 | Jan 18, 2021
In reply to @katec "Thank you so much for your kind words, Lori! I’m going to start investigating more and..." + (show)
@katec

Thank you so much for your kind words, Lori! I’m going to start investigating more and see what the process is and probably look at a more long term car for him if we are investing into something like that. He hates to be different and look different from his friends, but I’ve seen some systems that don’t look “handicapped” so I’m hoping he’d be open to something like that because I know only having a learners permit is bothering him, when all his friends have their actual licenses. It’s not easy in SO many ways being 16 with SFN, but we will make the best of it and plow forward. We are always looking for ways to make him more comfortable and will hopefully find some solutions eventually!! Have a great night! Kate

Jump to this post

@katec Kate, again, my best to you. I am a Momma, and I wish you strength and soul in dealing with your lovely son. LoriRenee1

REPLY
1 reply
katec | @katec | Jan 20, 2021
In reply to @jimhd "@katec Driving is a big deal to a 16 year old. I have the same problem...." + (show)
@jimhd

@katec Driving is a big deal to a 16 year old.

I have the same problem. It hurts my feet to sit at a light with my foot on the brakes, so I often put it in park until the light turns. Having a foot on the accelerator hurts after even just a few minutes, so I use cruise control even for a short distance.

I haven't noticed that our Taurus is any better or worse than my big pickup. I like to drive the Cadillac because there's more room to move my feet around. When I change position they hurt less for a few minutes, so I'm constantly moving them around.

For me, it doesn't matter what shoes I'm wearing because it's not the comfort of the shoes. They might make walking less painful, but behind the wheel, it's the pressure on the balls of my feet that hurts. When I'm driving, once in a while I tell my wife that my feet are really hurting, and she'll usually make a comment about getting rid of the shoes.

If I'm driving on open highway, I sometimes take my shoes off, and put my feet on the cushion I keep on the floor in front of the seat.

We become more adaptive when pain is involved.

I continue to pray for your son every night.

Jim

Jump to this post

Thank you Jim! I completely agree with your last statement “we become more adaptive when pain is involved” and think everyone in this group does that which is why this group is my “go to” when I have a question! Such wonderful people full of helpful ideas and always full of hope despite hurting everyday!

Thank you for your prayers, they mean a lot!

REPLY
katec | @katec | Jan 20, 2021
In reply to @howardm "katc: you may want to try a Honda CR-V. I’ve been very surprised that they have..." + (show)
@howardm

katc: you may want to try a Honda CR-V. I’ve been very surprised that they have incorporated many things that other manufacturers don’t bother with, and after renting a few in other areas I’ve appreciated the designs even more. There are many handicapped friendly features that don’t look like handicap features.

Howard

Jump to this post

We will take a look, thank you so much!! I’ve never been in one, so I’m looking forward to trying it out!

REPLY
katec | @katec | Jan 20, 2021
In reply to @jesfactsmon "@katec Hi Kate, I saw this discussion and was not previously aware of your son's situation...." + (show)
@jesfactsmon

@katec
Hi Kate, I saw this discussion and was not previously aware of your son's situation. I am very very sorry to hear that someone so young has been stricken by this awful (understatement) affliction of peripheral neuropathy. This is a bit off of the topic of things which might facilitate his ability to drive. But I did think of a couple of things you might want to look into for your son if you have not already done so.

The first is something that might provide a small benefit in the way of some temporary relief for his burning feet. Linda, my wife, also has PN in her feet, which burn ferociously most of the time. Like many others we have tried quite a few different ideas we have heard about. One thing that has helped her a lot is a product called Penetrex. It is a homeopathic based product. I've recommended it a bunch of times, but here is the post where I first mentioned it (I think): https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=131#comment-395581

The other thing occurred to me when I was reading about how you and he were looking into stimulators, and that he tried a drg. I wondered if you had ever run across the idea of Calmare scrambler therapy? It was first developed by an Italian company and there are now a number of scrambler devices being used in the US. I had done a lot of reading about it 4-5 years ago. Rather than tell you about what it is, I will include a couple of links for you to look at. You can find a fair amount online about it. It apparently has helped some people a lot:
https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treating-neuropathic-pain/
https://www.scramblertherapy.org/false-myths.htm

I just thought this might be a good fit as a treatment for your son. Linda can't do it as she can't tolerate the travel; we are in the Nashville area and have not found one here, and she is too weak and pain impaired to go outside our area, but your son, being so young, might not have as much trouble. The devices are located here and there. Maybe there is one in Texas. The treatment itself takes 2 weeks and used to cost about $5000, but not sure how much now. I really feel for your son, and for you as his parent and guardian. What a nightmare! My heart is with you guys! Best, Hank

Jump to this post

Thank you so much!! I will certainly do my research on this and see if he’d be a good candidate!! I keep hoping that since he’s so young and does not have any other health problems that once we find the right thing, it could be life changing! 🤞🏼🤞🏼

REPLY
katec | @katec | Jan 20, 2021
In reply to @lorirenee1 "@katec Kate, again, my best to you. I am a Momma, and I wish you strength..." + (show)
@lorirenee1

@katec Kate, again, my best to you. I am a Momma, and I wish you strength and soul in dealing with your lovely son. LoriRenee1

Jump to this post

@lorirenee1
Thank you so much. It’s certainly tough having a child with a condition that for 5 years I have been able to do absolutely nothing to alleviate his pain, but I’m always looking and will never give up! I appreciate everyone’s good thoughts, advice and words of encouragement that are always offered in this group! This group has been invaluable to me in terms of its support and the kindness offered by everyone! I hope everyone finds some joy today! Thank you so much, Lori

Kate

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Apr 4, 2021

Hi Kate @katec - Did you hear back from Kempf? Just wondering how your search is going and if you were able to get all of your questions answered. How is your son doing?

REPLY
1 reply
katec | @katec | Apr 4, 2021
In reply to @johnbishop "Hi Kate @katec - Did you hear back from Kempf? Just wondering how your search is..." + (show)
@johnbishop

Hi Kate @katec - Did you hear back from Kempf? Just wondering how your search is going and if you were able to get all of your questions answered. How is your son doing?

Jump to this post

Hi John! @johnbishop You know, I’ve contacted Kempf multiple times via email and called but nobody will get back to me 🤷🏼‍♀️ My son was appalled at the idea, so I think we will put it on the back burner for now and look at options again when he’s ready. We still can’t seem to get any pain relief for him, but are always trying things. I’ve also called and emailed about calmare treatment at one particular center (it’s near family so it would be nice to have a place to stay if he were to undergo that treatment) but after several emails back and forth they haven’t responded. I think his age scares them since he is only 16 years old and most places want to see adults, so 18 years and older. I will look at other places offering Calmare because it does sound like a viable option.

How are you feeling? I hope you have a wonderful Easter weekend and are starting to have some spring weather!! It’s been nice and warm here in Texas, which we needed after that winter storm we had!!

Thanks for checking in!

Kate

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 4, 2021
In reply to @katec "Hi John! @johnbishop You know, I’ve contacted Kempf multiple times via email and called but nobody..." + (show)
@katec

Hi John! @johnbishop You know, I’ve contacted Kempf multiple times via email and called but nobody will get back to me 🤷🏼‍♀️ My son was appalled at the idea, so I think we will put it on the back burner for now and look at options again when he’s ready. We still can’t seem to get any pain relief for him, but are always trying things. I’ve also called and emailed about calmare treatment at one particular center (it’s near family so it would be nice to have a place to stay if he were to undergo that treatment) but after several emails back and forth they haven’t responded. I think his age scares them since he is only 16 years old and most places want to see adults, so 18 years and older. I will look at other places offering Calmare because it does sound like a viable option.

How are you feeling? I hope you have a wonderful Easter weekend and are starting to have some spring weather!! It’s been nice and warm here in Texas, which we needed after that winter storm we had!!

Thanks for checking in!

Kate

Jump to this post

Hi Kate @katec, It's probably good that your son wasn't too keen on the hand controls idea. Not sure why they didn't get back to you unless it's due to COVID and they are shut down. Have you seen this article on teenagers finding relief with Calmare Therapy?

Teenager with RSD Discovers Calmare Scrambler Therapy on YouTube:
-- https://calmaretherapynj.com/2019/03/13/teenager-with-rsd-discovers-calmare-therapy-on-youtube/

I've actually been doing pretty good the past few months. I have some sensations coming back into my feet where they feel almost normal at times. We had lunch with my wife's sister and husband yesterday. They just got back from their yearly Winter Texan stay at the Rio Grande Bible Institute in Edinburg, Tx. They mentioned they were without electricity for 3 days during the storm. Glad you folks finally have some nice warm weather returning.

Not sure if you've seen the discussion on Connect for Calmare Therapy...
Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/

Is your son still taking the protocol? Hoping he finds some relief soon. Would love to hear an update if you are able to get him into the Calmare Therapy.

REPLY
greenacres | @greenacres | Sep 29, 2021

Hi @katec My husband also has the painful sensation in his feet. He wears these insoles made by Kenkoh that help distract the painful feelings. He's unable to go barefoot or wear any other type of shoe. https://www.kenkohrelief.com/Products/Kenkoh-Insole-Natural-Massage-Insole__3803-NAT.aspx
Still has pain but uses different things to help manage it (meds/supplements/topicals) plays music, meditates, etc.
I'm sorry you're son is dealing with this but please keep us posted on how he is doing.

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