Neuropathy patient advocacy is the answer: Widow finds hope in Foundation’s purpose  

When Matt first began showing signs of neuropathy, he and his wife, Cassie, didn’t realize how difficult the journey ahead would be. They faced confusing advice, failed treatments, and constant worries about the future. Through it all, they learned how important it is to have honest information and real support. Cassie shares their story in hopes of helping others facing the same challenges. 

Early concerns and diagnosis 

When my husband first started to sense “something weird” in one of his feet, we didn’t think too much about it.  

However, over the course of a couple years, it kept progressing until one day he also noticed a tinge of something odd in the other foot. And that’s when, as his wife, I became increasingly concerned. Right away, I started doing what I do – Google, research, read, and I was convinced it was neuropathy, a condition which is physically and mentally debilitating.  

Eventually, Matt had significant numbness and burning sensations to the point he became worried about a lot of things – will I continue to be able to drive, mow the yard? If we have children, will I be able to play with them? Will I know if I sustain a foot injury? Of course, those are just a few of the wide range of concerns.  

Searching for answers 

As former journalists and intensely thorough people, we began evaluating the best ways to address neuropathy. His primary doctor gave the formal diagnosis, telling him it was likely due to a combination of lifestyle factors, also unsure if there was any genetic or hereditary connection, or if he was just an “unlucky” one. We went to a variety of folks, including specialists within our health system. Matt also tried a couple of medications, both of which “effed him up,” as he would tell you, so he stopped that despite wanting relief so badly.  

False promises and costly scams 

Eventually, during my intense research, I found what I’ll now refer to as a “neuropathy witch doctor” – you might know what I mean, but if you don’t: These individuals might be a chiropractor or other person who do not have an M.D. that promise significant reversal of the condition with help from a couple devices you could purchase for yourself on Amazon. There might also be an app, expensive supplements that you later find out you can get at Walmart, and a couple phone calls a month. The real clincher?  

It’ll cost you thousands and thousands of dollars.  

This part of the story is so important: Be skeptical of anyone who promises to reverse this disease through unproven methods out of what likely will be a chiropractor’s office storefront. This particular person did an evaluation of Matt, gave us a cookie cutter video viewing that clearly came straight out of a template box and told him there was little hope due to its progression. However, she said she could see the value in us spending…more than $6,000. I wanted to laugh her out of her own office, but Matt, amazingly, kept great composure.  

Of course, as thorough people, we had to “think about it” and were not going to write the check that day. When we made clear we weren’t proceeding immediately and also asked for the paperwork to take home and look over, she became incredibly defensive and clearly upset, as she began to realize she wasn’t going to make bank off of us. I swore a lot of swear words as we walked to the car that day, and we never went back.  

Exploring other treatments 

After that experience, we also went to a neurologist, who said significant lifestyle changes could possibly bring back some sensation in Matt’s feet. Matt, also a big researcher, found some information about dry needling becoming something neuropathy patients try, some with a little success, so we tried that, too. It didn’t help after a couple appointments with a very kind and empathetic physical therapist, so we stopped.  

Eventually, we bought a red light therapy device and TENS unit on Amazon and started doing red light regularly.  

An unexpected goodbye 

Unfortunately, we never got to trying out the home TENS unit, as Matt died of a heart attack this September at the very young age of 46. Even though he didn’t die from neuropathy, of course, the condition is a significant part of his story.  

During the wide-ranging experiences he had, he was yearning for a connection to a local support group (we even considered starting one ourselves), and he did find some solace in connecting with people on Reddit and sharing a lot of his experiences, including good socks to try and questions to ask your doctor. Many people with neuropathy didn’t know what Matt did and he greatly enjoyed feeling like he was helping others, even if it was in small ways. 

Finding hope in advocacy 

That’s where the next part of the journey comes in: Connecting with the Foundation for Peripheral Neuropathy. Unfortunately, we didn’t discover it during Matt’s life, but I wanted to make sure support for people like Matt is a focus in the health advocacy space now and in the future.  

Carrying his legacy forward 

Our family is asking that memorials be sent to three nonprofits, including the Foundation, in lieu of flowers after his service. It’s the very least we can do to support an organization dedicated to the experiences of people like Matt.  

Please join us in supporting the Foundation – I find hope in their work and hope you do, too.