Peripheral sensory neuropathy - Anyone tried Walkasins?

Hello @ssjohns, I haven't tried Walkasins but did get to listen the research scientist that gave us a presentation at a Minnesota Neuropathy Association meeting on the new product at the time -- Lars Oddsson, PhD associated with Boston University (https://cse.umn.edu/tli/lars-oddsson-phd). You will notice that we changed your discussion title a little to better describe your discussion and help members find it. @centre has some experience that they might be able to share.

Here's a really good review and patient's perspective. Hopefully any members that may be using it will respond also.

Thank you John. I appreciate your help to reach as many people as possible. I hope I can get some good feedback. I have called the company and requested a callback in order to get my doctor this device for me. I am really having a difficult time getting around and require a Rollator and wheelchair. It took about eight years to get my diagnosis so I’m behind and trying to find a solution as soon as possible. I am also looking into the spinal cord stimulation (SCS) implant for the pain.

Thanks again. Ssjohns

@johnbishop John, I know in the past, we tend to be....shall we say....cautious about items that come along helping those with numbness and balance issues caused by PN. Not long ago, I did hear about this device and it sort of caught my attention. I too would like to know if anyone has tried this and to please post their findings. It would be terrific to hear from someone not associated with the production or promotion of Walkisins. I always feel those on the front lines provide the best information. Thank you @ssjohns for bringing this to us. Remain hopeful! Ed

@centre has posted experience about the Walkasins and may have more thoughts to share:

Below are links to the posts:
--- https://connect.mayoclinic.org/comment/659859/
--- https://connect.mayoclinic.org/comment/659866/

Just received an email from RX function stating that they are unable to service patients in Alabama, Florida, Georgia, Oklahoma, and Tennessee. I am extremely disappointed since I am a resident of Florida. I had gotten my hopes up, thinking this might be the best thing out there.

However, I will not give up and I will continue to search for a remedy.

@ssjohns - Wow...that is kind of odd, those five states. Wonder why? Perhaps I will make contact and see what happens with me in NJ. Don't give up and the best in your efforts.

It would be nice to know what these cost both in Canada and the US. I am a Canadian and sometimes these things can be out of a persons price range. Because this is new, I know my insurance would not cover it. It is interesting, however, to know that there is work being done out there to help those of us suffering from this debilitating illness!

From what I’ve read insurance does not cover this at all. What amazes me is that there’s only one company that makes a device like this in the US not even sure there’s one in Canada. Since there are 20 million people suffering from this illness why hasn’t anybody else developed this technology to help the masses. This technology should be made available to all prosthetic companies everywhere. And prescribed by their neurologist. I understand that this device might need to be adjusted to benefit the individual but no one should have to drive long distances in order to receive this medical miracle. It is already difficult for those of us suffering from this illness to travel. If this device improves my quality of life, then I will pay whatever it is to get it.

@ssjohns -- I did some snooping around yesterday online and to the question raised by @tessie63 the best I can see is the cost is around $4400 (assume for a pair) and the cost could come down once more begin to sell. I went on the RX website that is promoting these and filled out the form online. So far, I have not received a response. It would be interesting to try on a pair and see if or how they work. Hard to determine if FDA approved. Also, from what I can see, there is no information on The Foundation for Peripheral Neuropathy website about these. I am sort of curious about that. Early stages perhaps.

OMG 😱

That’s a little steep, and not affordable for most people. Please let us know if you get a response.

I signed up for one of the support groups on the foundation website, but have yet had an opportunity to join one in progress. I will email Katherine and inquire about this. She has been very helpful to me.

Thanks for the info.