PN: Current research?

Posted by Ray Kemble @ray666, Jun 26, 2023

Hi!

Is anyone following recent research on PN? I've checked, and although I've found lists of clinical trials, most are over or have closed due to a lack of funding. Yesterday's NYT had an interesting article about the high hopes placed on Crispr research. A dozen maladies were mentioned as possible beneficiaries in the coming years (and decades), but not PN. Have any of you read any recent promising research stories?

Ray (@ray666)

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

@njed

@dpso - I'm asked same question by family and friends, and I drive fine. Since I have PN with bilateral drop foot, I was prescribed AFO's made by Ottobock which eliminate the slapping of the foot and provide me with much better balance. I can feel the pressure of the gas peddle and pressure on the brake. I think the AFO's help a lot. I also don't drive more than 90 minutes without getting out and walking around for 5 minutes. Also, hand controls might be an option. From what I've read, good idea to have a certified dealership for that made vehicle install the hand controls. Ed

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Half of my left foot is completely dead. Fortunately, it's not my right foot. I am still a good driver.I pray I continue to drive!
I exercise a lot to keep good blood flow to my feet.
Water aerobics, walking, biking, and strength training!
Hope this helps. Pat

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@ray666

Hi, dpso (@dpso)

I've no problem driving. Of course, I'm unaware of numbness, although the EMG insists I've got some. I'm only troubled by poor balance––poorer at some hours of the day than others. Something Michael J. Fox said in his latest memoir, No Time Like the Future, about one of Parkinson's more curious effects, has stuck with me. Fox said that as challenging as it is for him to walk a straight line on a flat surface, he has far less difficulty going up and down stairs. He believes something is exacting about the "geography" of stairs that tells his brain, "Put your right foot exactly here, now your left foot exactly here, now your right … " I suspect there may be a similar exactness about driving that (at least for me) temporarily clears away the inexactness I contend with when I'm simply trying to walk down the street.

Ray (@ray666)

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Thanks Ray, I guess I misunderstood and thought you did have diabetic neuropathy with numbness. But your MJ Fox story reminds me an account I heard many years ago (not sure of the accuracy) about a man who like you had balance trouble walking on a regular sidewalk. But he visited his son and when they took a walk through his flower garden, it had a stepping stone pathway. His son noticed his dad had no problem walking on that irregular spaced stepping stone pathway. Apparently like MJF, when he had to focus on each step, he had no problem with balance. Again, not sure of the accuracy but sounds similar to MJF.

Dave

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@dpso

Thanks Ray, I guess I misunderstood and thought you did have diabetic neuropathy with numbness. But your MJ Fox story reminds me an account I heard many years ago (not sure of the accuracy) about a man who like you had balance trouble walking on a regular sidewalk. But he visited his son and when they took a walk through his flower garden, it had a stepping stone pathway. His son noticed his dad had no problem walking on that irregular spaced stepping stone pathway. Apparently like MJF, when he had to focus on each step, he had no problem with balance. Again, not sure of the accuracy but sounds similar to MJF.

Dave

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That may be what it is: focus. Focus, and taking your time. That was another idea I got from MJF's story. I can't recall if it was from his memoir or from the recent documentary, the suggestion that I do not focus solely on the distant object toward which I'm heading––the sofa at the other end of the room or the supermarket entrance at the far end of the parking lot––but instead focus on where I am, doing what's necessary to go safely from where I am to the next "where I am." MJK said (or was told by his personal trainer) that total focus on a remote destination encourages speed, even when not intending to speed, and speed for so many of us is the enemy. Prudent caution (without being so cautious, we become timid) results in reaching that remote destination without a mishap. That's all focus, in one way or another. It works for me.

Ray

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@gba

I ordered Nooro NMES today, Check out their Website. Seems to be to good to be true. Has return policy.
I have Neuropathy about 4 years. Good luck, will report my findings after trying it.

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I have used various massagers on my feet and legs and I find that most of them do work pretty good. I think anything that stimulates the areas of PN can't be bad. Good luck and let us know how Nooro NMES works for you!

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@monive

I have used various massagers on my feet and legs and I find that most of them do work pretty good. I think anything that stimulates the areas of PN can't be bad. Good luck and let us know how Nooro NMES works for you!

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Regarding foot neuropathy and driving, I got hand controls about 10 years ago. Because I was still working, I qualified for a special driving program to learn how to drive this way, and it was all covered by Voc rehab. This can be a headache when renting cars, but most companies do have a phone number where you can request hand controls on a rental car. They don’t charge for this, however, they usually insist on putting hand controls on one of their more expensive cars to rent.

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@gba

Good morning, Ray
You might also check out two others, Walkasins and scrambler Calmare. Both have good reviews.

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About the electronic Calmare therapy: I have found a local provider that is linked to a large hospital. But when I told the specialist (by phone) that my neuropathy is caused by an old back injury she said she doubted that this will work for that kind of neuropathy. Also, it costs $175 a session and insurance does not cover it. She said I would be able to see if it would work after 2 or 3 sessions. I still might try it as nothing else works anyway.

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Hi Ray @ray666, Did you see this news?

--- PN Renewed in Senate Defense Bill: https://www.foundationforpn.org/pn-renewed-in-senate-defense-bill/

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Good morning, John (@johnbishop)

Thank you for calling my attention to this latest FPN advocacy update. I had missed it. I have been trying to get information from my legislators about the defense bill and peripheral neuropathy for the past few weeks, but I have yet to receive a reply. I guess when the legislators say "summer recess," they mean it! 😀

Ray

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@johnbishop - John, thanks for bringing this to the forefront and hopefully, when they return, this will not get stripped down. The $370 million means that finally, PN is hopefully being recognized for what it is. I'm also a member of the Foundation and I'll be looking for updates. Thanks again. Ed

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I would like research information on MMP13 enzyme inhibitors. It appears promising. I hope someone can
start a blog chat on this topic. Thank you

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