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The Neurotransmitters: Clinical Neurology Education
Navigating Neuropathy with Linda Petiot
Have you ever felt a pins and needles sensation that won't go away, or experienced unexplained burning or fatigue? These are just a few symptoms of neuropathy, a complex condition that affects many people worldwide. Today, we're fortunate to have Linda Petiot, president of the Calgary Neuropathy Association and a patient advocate living with Charcot-Marie Tooth Disease (CMT), a form of peripheral neuropathy, to guide us through the intricacies of this condition and share her journey.
There's much to learn about neuropathy, including its common symptoms, current medication treatments, the importance of accurate diagnosis, and the role of a multidisciplinary team in managing the condition. Linda highlights the challenges faced by patients who must travel for treatment and the potential benefits of medications, while also emphasizing the need for more information about their efficacy. She brings to light the limitations of current treatments and how the Calgary Neuropathy Association is empowering individuals through education and support.
In our discussion, we also delve into strategies for managing neuropathy. Not only do we discuss the use of unusual solutions like Vick's Vaporub, fans, and capsaicin creams, but we also touch on the side effects of commonly prescribed medications like gabapentin and pregabalin. Linda shares her insights on supplements such as alpha lipoic acid and the importance of finding a support system. From managing chronic pain to improving quality of life, this episode is filled with invaluable information for anyone interested in neuropathy. So, don't miss out on this enlightening conversation with Linda Petiot.
Tune in, and let's learn together!
Find further resources at:
The Calgary Neuropathy Association
https://calgaryneuropathy.com/
Western Neuropathy Association
https://pnhelp.org/
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Hello and welcome back to the Neuro Transmitters. I'm your host, Dr. Michael Kentris, and today I am joined by the president of the Calgary Neuropathy Association, Linda Petiot. Welcome.
Linda Petiot:Hi, thank you. Thanks for having me today. I'm very flattered that you agreed to talk to me.
Michael Kentris:Oh no, I love hearing from folks and everyone's perspective is always so interesting, especially because you did reach out about something we haven't talked about on the podcast before, which is neuropathy. So if you wouldn't mind giving us a little bit of your background and kind of how you wound up being involved with the advocacy and the organization around neuropathy, Sure, yeah.
Linda Petiot:So I'm actually a retired information systems business analyst, and what a business analyst does is we're given a problem to be solved and I sort of would go out, listen to all the stakeholders, all the sides, dig into things, consolidate the information and then present it to the people who needed to know, so that they could make decisions about how they were going to solve the problem, and that really has translated into what I call my retirement gig. This is what I'm doing in my retirement. It's all volunteer. I'm basically a serial volunteer. I've done it since I was a kid.
Linda Petiot:As far as neuropathy goes, though, I have Charcot-Marie Tooth Disease, which, of course, is hereditary peripheral neuropathy. So a lot of my examples will probably be because of CMT, because that's what I have and that's what I know, but I am here about all kinds of peripheral neuropathy. For the association, the short version of our mission really is to provide education and support for those affected by peripheral neuropathy. This year, we're kind of focusing on awareness, hence why I'm here. Excellent, like I said, 100% volunteer. The association is non-for-profit.
Linda Petiot:In Canada, we are kind of tied a little bit with our local medical school, trying to help students learn a bit more. That way. We don't sell anything, we don't endorse anything, we don't charge to join. We really just survive on donations. And we exist because there's kind of a gap with peripheral neuropathy. Like there's lots. Well, there's some medications, but they're kind of limited, and by that I mean there's not that many to offer and there's none that are specifically designed for peripheral neuropathy. They're usually taken from something else and then used. The relief is kind of only partial, not really complete, and so people keep going back to their doctors and saying, well, it's not working, it's not working, and the dose gets up and up until they end up maxing out. That doesn't happen to everybody, but it does happen a fair bit.
Michael Kentris:Fairly often yeah.
Linda Petiot:Yeah, so with our education stuff we really try to use sort of that bio-psycho-social model, with our own spin towards peripheral neuropathy and self-management, and we really have found that if people know why something will help, that really helps them be motivated to use it.
Michael Kentris:Yeah, kind of that empowerment through knowledge.
Linda Petiot:Exactly yeah, which?
Michael Kentris:like you said, is a piece of the bio-psycho-social model for a lot of people, kind of using it as a mechanism in that. So you mentioned you have CMT. Now that's certainly not the most common neuropathy that folks present to their doctors with, so I'm going to imagine that might have been a little bit of a convoluted path.
Linda Petiot:Yeah, it was. I got it from my dad and my dad had complained for years about his legs and the doctors should just be able to fix my darn legs. And it wasn't until he was 77 that he got diagnosed. And when I took him to the doctors, to the neurologist, and the doctor said, well, do you have any of these same symptoms? And I said, well, yeah, I think I do. Well, why don't you hop up on the table there and we'll have a quick peek? So he did the pins and the reflexes and said you know you should book an appointment with me. So that's what I did and that's how I got diagnosed. And then from there, you know, they tree out. We tested my son and my sister. What my son has, my sister doesn't. So that's how I went.
Michael Kentris:And as far as you know, obviously you know. So CMT is one of those things where it depends on if you're kind of a lump or a splitter, as some people kind of think about medical diagnostics. Right, it's like things that are similar. You lump them together or do you split things down to like the very nitty gritty details. So I know some people have more like sensation loss, sensation loss plus weakness, or sometimes just weakness by itself, and it depends a little bit on the variant and so on.
Linda Petiot:Yeah, I have sensation loss and muscle weakness.
Michael Kentris:The sensation loss doesn't bother me For me that much yet, but the muscle weakness is definitely causing falls and causing muscle cramps and spasms and stuff like that and that was something you mentioned a little bit before we started recording was that neuropathy isn't necessarily all of it, as much as it is sometimes part of a spectrum of things. So I think everyone especially diabetes being a pretty frequent cause for some people we know that kind of painful numbness is very common, but the cramps and things like that. So what other things are working? Doing your advocacy work do people find are like these symptoms that tend to most affect their quality of life and kind of drive them for seeking help?
Linda Petiot:Well, of course there's the pins and needles. I was talking with a fellow last night. He says it feels like I'm walking on glass all the time. These things always seem to be worse at night and so the sleep problems trying to get to sleep when your feet are burning it's almost impossible. So you'll see people up on chat rooms and stuff at three in the morning because they can't sleep. All that pain that they're having ends up in brain fog so they have difficulty concentrating and stuff like that and tired and fatigue.
Linda Petiot:I'm very fortunate actually in that I don't. I consider mine mild basically, so I don't have the tiredness that some people do. But it can really affect their ability to function. Even some people are in so much pain they can't function at all. They can't hold down a job anymore, Some can't even hold a conversation at times and a lot of that can lead to depression or anxiety. I know, actually even I have some anxiety having watched my dad go from a healthy, strong, six foot four, like could do whatever the heck he wanted, to not being able to walk anymore, and just in a matter of the last 15 years of his life it really kind of declined and caused problems for him.
Michael Kentris:Yeah, I remember the first time I met a gentleman with CMT was when I was a medical student, and it's almost exactly what you described. He was probably in his mid to late 50s, but he was a this was years and years ago, but not to age myself too much but he was a very, like you said, very muscled, well muscled guy. But you would see he had much smaller hands and forearms and his calves in particular, and he was using bilateral ankle foot orthotic devices or AFOs, but he was still whatever he was able to do. He was still pushing himself as much. So, like the rest of his musculature was still, even compared to myself today, 20 pounds heavier than I was then, he was still quite more muscled than I am, and so so, yeah, there definitely is that that element to it where some people like, like you said, they kind of push their limits as long as they're able to, but but yeah, it's definitely again right ties back into that that mindset and being more proactive with your health.
Linda Petiot:Well, and he, he, he muscled his way through using his upper body strength. He by the by the end he really couldn't feel from the knees below and so when he walked his foot would come forward, he'd hyperextend his knee and lock his leg in place and sort of just inches way forward that way, but with a walker, you know, when he got first got diagnosed I asked so is is he going to end up in a wheelchair because of this? And the neurologist said oh no, no, that's not a problem. But you know, my dad also had cancer treatment at one point. He was on statins, he loved sugar, had some degenerated discs, so he actually did end up for the last few months of his life in a wheelchair because of the compounding effect of it all together.
Michael Kentris:It's easy in medicine to think of like this one problem, that kind of reductionist model where you're like this is the single problem but nothing happens in a vacuum and so so you're absolutely right around cancer drugs or the cancer itself causing more nerve damage. If there's any diabetes or prediabetes, yeah, that makes it a lot more sticky to tease apart what's causing what, and it certainly doesn't help avoid progression. And that's always the hard part is, at least from kind of the evaluation standpoint, when people come in with peripheral neuropathy or symptoms suggestive of peripheral neuropathy, like weakness or numbness in the hands, feet, etc. There's just so many things that can cause neuropathy that you're really having to dig deep.
Linda Petiot:And it's not necessarily one thing, right, dr Justin Marchegiani?
Michael Kentris:Exactly, dr. Justin.
Linda Petiot:Marchegiani, if you had neuropathy, because you have lupus and then you also have arthritis and there's lots of medications that arthritis for rheumatoid arthritis anyway, that can cause neuropathy symptoms as well, so it's like the whole compounding effect is a real problem, dr Justin.
Michael Kentris:Marchegiani, absolutely, from the kind of the patient advocacy side, and this is something when we had been exchanging emails earlier you had mentioned, and I do think it's true, although my neuromuscular colleagues may disagree with me but you know, neuropathy is not thought to be like one of the you know flashy or sexy diseases and it doesn't get the same kind of funding as things like, you know, dementia or which you know I hate to say that's like flashy, but it definitely is getting more in terms of like resource funding or you know things like that. There's more prominent advocacy groups, you know, that are like kind of taking those up and neuropathy, as you said is, it is such a varied and such a disabling entity for a lot of people that it really does deserve a little more attention, dr.
Linda Petiot:Julie L.
Michael Kentris:Right, and it is one of those things where, or even you know, in neurology training, at least in the United States, the majority of peripheral neuroanatomy education usually comes kind of in the latter half of training. You know, a lot of the front half is kind of front loaded more in the hospital kind of this acute care setting, so that a lot of people aren't necessarily, you know, and obviously there's differences between programs but a lot of people aren't getting thorough training, and so there may be this, let's just say, discomfort with more complicated presentations of neuropathy.
Linda Petiot:h, for sure, One of the reasons we want to connect with the medical school here in Calgary right now, not for a neurologist, necessarily, but for the medical students. They get one lecture for one hour and their entire training on peripheral neuropathy. And yeah, so I think it shows sometimes.
Michael Kentris:Right, and if you look for reasons for referrals, like there have been meta-analyses and studies done, neuropathy or neuropathy-type symptoms like numbness, weakness, are some of the most common reasons for referrals to neurologists. But you sometimes see folks who are working in family medicine or internal medicine in the primary care setting and maybe that, as you said, is all of the training they've gotten on how to evaluate neuropathy and so it really does leave a lot to be desired in the kind of the diagnostic approach.
Linda Petiot:Yeah, and you know patients when they first go in, you know some of them it's been a long journey to get there, sometimes as long as 18 months and they're going in with such great expectations that and they're just so excited to get there and they're really hoping they're going to get an answer and they're going to get a treatment. And then when they leave and you know, sometimes they do get an answer, like we did, Other times you don't, and it's really okay. Well, you're already on whatever medication and so we're just going to keep that and people go home feeling really deflated, I guess would be the word.
Michael Kentris:Yeah, it can be very underwhelming, you know, looking at some of the data I'm sure you're familiar with this as well Some studies would suggest that around 20% of people with neuropathy, you know, ends up being idiopathic, right, and I know we were throwing that term around earlier before we started recording as well, and it's right, it's just medical use for, like, we don't know exactly what caused it, but we've checked for at least a reasonable number, well, depending on the situation, a reasonable number of entities. And yeah, that can be very frustrating, you know, because you still don't know, like, why did this happen? Why me, right?
Linda Petiot:Yeah, exactly. Well, the number we've been going with is 30% of people with peripheral neuropathy. I'm not sure where that number came from. I know for me, when we got, when my dad and I got diagnosed, it kind of set off a whole bunch of light bulbs, right. Oh, so that's why I couldn't run as fast as the other kids, or that's why my muscles hurt so much, that's why I fall down so much.
Michael Kentris:Okay, yeah, not just clumsy right.
Linda Petiot:Not just clumsy, which is what I kind of thought it was. But that diagnosis is so important for people, first of all because if they don't get it, that's what they're going to focus on when they go home. They're going to. Well, I need to know what's causing this so I can stop doing whatever that's causing it. But there's other reasons too. There's, you know. If it is something like diabetes, well that's great. I mean it's not great, but now you have something. Okay, I have diabetes.
Linda Petiot:That's where my first focus should be is managing my diabetes, and that's the start of their self-care plan we already talked about. Well, maybe there's more than one diagnosis, but you know somebody who goes home, like with CMT, the first thing you do is you go home and you start Googling stuff because you want to know what that is For me with CMT. I look at the studies. There's different support groups, there's all kinds of different changes maybe not with CMT, but that you can make for yourself when you get diagnosed with something, and so it just gives your focus a place to go. I guess that's more constructive than trying to find out what caused it.
Michael Kentris:Right, and I do remember this was probably when I was a fellow and I think I've probably advanced a little bit since then in the last number of years. But you know they are continuing to research for, like certain variations of CMT or other hereditary neuropathies, and you know there are some. I think they're only up to animal models still at this point. But it is fascinating to look at where we are now as opposed to say 20 years ago, and what will 20 years from now look like for people who have it at that point. And so there is, you know, maybe not for people who are alive today, but in the future there certainly is some promising things in the pipeline. Going back to your point, having an answer, knowing if there is a genetic cause or something a little more unusual are the research, trials and ways to, like you said, be active in the community and be an advocate for these less common causes?
Linda Petiot:Exactly, yeah, and who do you want on your team, right? Right, and I have a lot of doctors who's you know? I remember the neurologist mentioning something about the neuro muscular clinic here in town and he didn't make a referral. But I had to go back to my GP and ask her for a referral and she was new in the city so she didn't know. But anyway, asking for that referral to the different kinds of, like a physiatrist or whatever it is, or let's say, you have Lyme disease, maybe somebody who specializes in Lyme, if you don't already have that right?
Michael Kentris:Yeah, and that is the thing is that there are these multidisciplinary clinics out there. Usually, you know, at the more academic areas which certainly in parts of Canada, parts of the US, you may be 50, 100 miles away from some of these places, maybe more in some areas of the country, and just getting there can be very challenging in the first place.
Linda Petiot:Yeah, yeah, exactly the fellow I was talking to yesterday. He lives in a city two hours away but there's no neurologist there, so he got referred to somebody up here in Calgary, which you know. If you're going to get treatment, that's a long ways to go if you have to go regularly.
Michael Kentris:Right and especially I assume he has neuropathy, so driving can sometimes for people with neuropathy if you don't have the special adaptations on your car might be very challenging.
Linda Petiot:Yeah, and even with the fatigue that comes in. You have so much energy in a day and if you're using it up getting to your appointments by the time you get there it's hard to even focus on what the doctor is telling you.
Michael Kentris:Yeah. So, talking with the folks you've talked with and your own personal experience as well, what are the things that you wish your GP or your first neurologist would have keyed in on, would have talked with you about? What are the things that would have been, let's just say, made that process from an initial diagnosis to like what's the plan going forward more smooth?
Linda Petiot:I'd say there's things that maybe they could be doing, like the neuropathy medications, for example, knowing that. So we're going to give you this medication, but just so you know, it's only going to help you 30 to 40% of relief and no more than that. So chances are you're not going to find full relief. The best results come from learning techniques Right. There's simple little things. A lot of people, of course, their neuropathy is in their feet. This is a silly. It sounds like a silly example, but it works for a lot of people.
Linda Petiot:You take and it's worse at night. So you take VIX Vapour Rub and you put it on your feet and of course it's got the menthol in it and the camphor. So that's got some kind of cooling. That's going on. Nerves can only send one message at a time. So I'm told so so that that can work by itself for some people. If it's not enough, you can put a fan that's blowing on your feet with the VIX Vapour Rub and that really helps. And if that still doesn't work, you can make the fan oscillate and that helps even more the fan oscillating.
Michael Kentris:that's a new trick for me. I'll have to keep that one in mind.
Linda Petiot:Yeah so, but people, some people will do some of the craziest things. I remember sitting with my dad and this was long before we knew he had CMT. His feet were burning. We were sitting out in the backyard but there was snow banks around he's. My feet hurt so bad. Help me get over to the. Help me get over there. He's stuck his feet in the snow. I don't think that's a good idea.
Michael Kentris:It's a restante.
Linda Petiot:But it's hurt so much that you're just looking for anything to give the relief. And I know lots of people. I hear them sticking in my nice water and stuff like that and I just, yeah, you're just going to do more damage, but they don't understand these kinds of little things that are hurting them Right, and I don't know if it's over the counter in Canada as well, but there's some capsaicin creams and things like that.
Michael Kentris:Like other topical agents. Some people use compounding pharmacies for different mixtures of different drugs and things like that, with variable results.
Linda Petiot:Yeah, but yeah, it is yeah, go ahead. Yeah, sorry.
Michael Kentris:No, that's fine.
Linda Petiot:That's. One of the things that I think I'd like to see get tried more often is the compounding drugs, because they help a lot of people and they've got the medications like ketamine that take the pain away completely. Another one and of course it's not legal everywhere in the US, but medications with medical cannabis in them. They help a lot of people and it doesn't have to be an oral medication. It can again be a topical that helps.
Michael Kentris:Yeah, no very good points, and I always find. I think back to one person I took care of in the past in particular, who had multiple different reasons for neuropathy. She had had hepatitis infection as well as diabetes and had a heck of a time getting her blood sugar under control, and so we were trying to get her some relief and, like so many people around me, started out with gabapentin and she kind of developed tolerance issues with that. So we ended up switching to pregabalin or Lyrica and she came back six months later and we had slowly bumped up, but it had been a few months since I had seen her and she had gained like 20, 30 pounds. I'm just like I'm doing the most terrible thing for her to help her control her diabetes, and that's it's right. It's one of those things we don't think about, like weight gain, especially for folks who have diabetic neuropathy, is one of those really bad elements. That that those drugs can make worse. Right, we're trying to control symptoms, but we're kind of worsening the root cause.
Linda Petiot:Yeah yeah, gabapentin's kind of an interesting one. We had a neurologist come speak. This was a few years back I think he's retired now but he said that gabapentin became the gold standard for neuropathy, based on a 16 person study. But they had nothing else, so that's what we all went with.
Michael Kentris:Yeah, and now it's. Now it's generic, so it's nice and inexpensive.
Linda Petiot:Yeah, which is good.
Michael Kentris:Yes, it works somewhat for most people right.
Linda Petiot:For some people the side effects are so bad that they'd rather just deal with the neuropathy. I've heard that many times.
Michael Kentris:Yes, me too. Yeah, and that's that's always a tricky bit. And then I always I remember an article I read a year or two ago was kind of looking at like a pathway for different medications and I think some are a little more neglected than others in terms of like the different antidepressant families of medications like the SNRIs, like deloxatine and vanilla vaccine, and then one that I started using a few years ago which is more of a supplement in people who don't have reflux issues with their stomach or things like that, is alpha lipoic acid, which you probably come across as well. I think that one's a little underutilized in some populations.
Linda Petiot:That's well within our community, that neuropathy patients, that's sort of the first supplement people want to go to. Yeah it really is. Yeah, there's a. We have a whole list.
Michael Kentris:Right right.
Linda Petiot:You know, for me with CMT, one of the worst I used to get was like the really strong electrical shock randomly throughout my body. I remember sitting in a meeting with my boss and they would rack my whole body. I had one go through my stomach, my whole body would vibrate and she asked me afterwards what was that all about?
Michael Kentris:Yeah.
Linda Petiot:And I didn't know I had CMT. I didn't know. I thought everybody got these things. So I asked her well, don't you get those? No, okay, and didn't think much more about it then. But yeah, it's B12, vitamin B12 and actually a complex is. I ended up trying a few different before I got to that one, but it's all but eliminated those for me, unless I run out and then within about a week they start coming back.
Michael Kentris:Wow, interesting. Yeah, it's different people, different responses to relatively benign things is sometimes just it leaves you a little perplexed, right? Yeah, we always. We think we know something and you know someone comes along and just like, well, maybe not so much, but in terms of like people who are like maybe they got some numbness in their feet and their approach in their GP to get it worked out. What are the things that tend to be done well, tend to be done less well, areas for improvement for for this official evaluation.
Linda Petiot:Well, don't assume it just affects hands and feet, first of all because for lots it doesn't. I'd say, look at a person's medical medical history and what drugs that they're on and see if there's anything that are on the neurotoxic list. Because again, if you have, say, lupus and then you're given statins, well now you've got two things causing neuropathy. Potentially right, statins don't cause neuropathy for everybody, but I think if somebody already has neuropathy, you've got already damaged nerves and something that is neurotoxic is something that should maybe be looked at. And with statin I use statins because I'm on statins as well there's studies that show some of them aren't tied to neuropathy at all, or some are tied in a weaker way to neuropathy, like pravastatin, and then there's ones that show a much stronger link. So, if it doesn't matter, obviously make the switch.
Linda Petiot:I've also seen studies where vitamin B3 combined with your statins can help lessen the effect. So things like that, looking at that and understanding those kinds of things. If it's an neurologist and they're going to be reporting back to the GP, mention that biopsychosocial model. We have people who are in very dire straits because of their neuropathy. Within the last few years we've had within our sort of little circle of people three people who have committed suicide because their pain is so bad. It's awful to hear about and to know what these people are going through.
Linda Petiot:I would also recommend that they Talk to people about looking for support groups and and you know, a support group doesn't have to be a neuropathy support group or a Diabetes support group or anything like that. If you can go to art therapy or Yoga therapy, or we have one lady who who says her swimming club has saved her life because first of all, she's getting exercise but she's also got a community that she can relate to and talk to. There's all. There's so many ways to help ourselves, but Quite often we felt feel like we're left alone with this to deal with, because the medic, you know that's again setting the expectations. Medications aren't gonna help as much as you might think so. There's other things you need to look for.
Linda Petiot:Absolutely I think I might have diverged from your question.
Michael Kentris:That's okay. It's a free form, free-form conversation.
Michael Kentris:So so let's say, and I'm sure this is probably not an uncommon story, but we have someone who goes in to the GP and it's like oh, you know you, you have neuropathy and then we're just gonna refer you to neurologist and, like you said, right, the wait times can sometimes be quite long. What should they be pushing for? Right, I know, I mean, I know what I would say as the neurologist, but but what so? Our a lot of the GP is usually routinely ordering like some of the blood work and and testing that we would normally look for for evaluating, like kind of the Opening salvo for investigating neuropathy, or is there is there some things that are a little Left a chance.
Linda Petiot:I, I think they are. I know there was one fellow who volunteered with us, for example. He went to the doctors because he had neuropathy and that's how they discovered he had diabetes. Right. So I would expect because cancer Treatments and diabetes are the two highest causes that a GP, before they sent you off to a neurologist Especially if you had to wait a long time they would test for things like that. Well and and and, look at your history. So if they, if they can see that you've had some of the drugs or Cipro is another, it's an antibiotic but that has has been known for causing neuropathy you can sort of look through and see there's things that the GP can do. Is basically what I'm saying. And, yeah, I think they do do some of that, especially if it's a. The top of the list is diabetes.
Linda Petiot:So Right, it's an easy one to find, I would think, and there's a test for it. A lot of the times there aren't tests, right?
Michael Kentris:Very true for conditions. Right, you start getting down that list now.
Michael Kentris:We're, you know, checked for, like you said, diabetes, vitamin deficiencies, you know, made sure to screen for that history of exposure to different drugs or cancers and so forth then, a lot of times you're kind of talking about like genetic testing, which can be expensive sometimes, or Sometimes like skin fiber, skin nerve fiber biopsies or EMG is a nerve conduction studies and which are not particularly pleasant, especially if you already have pain. But yeah, it starts to get into the weeds pretty quickly after you kind of exhaust that top of list. Yeah, number of items.
Linda Petiot:Yeah, the Sometimes it's just weird things we had in in my response. I was telling you before, before we got started, that I put a message out there on on Facebook in a group. That's particularly good. What would you want your doctor to know about neuropathy? And the one fellow was talking about his mercury fillings. So obviously he was older but he couldn't get anybody to listen to him and so he had. He finally just gave up and have the tooth pulled and then somehow he says it got better. So there's going to be strange things, but listening to, listening to the patient, if they suspect maybe they don't have it quite right, but maybe they have something in the right area. So yeah, I've heard a couple of stories like that.
Michael Kentris:There are. There are always those strange ones and you're never quite sure. It's funny you mentioned that I had a the gentleman I took care of years in the past who who used to make those kinds of fillings and he had years later developed Neuropathy. His ended up being autoimmune. But but we were, you know, at the first few months we're like, is this related to it? It's like he hasn't been doing it for like over a decade, it you know. But yeah, it's one of those things where there's just so many clauses once you get into those weeds that especially if you don't have a definite answer, you kind of Sometimes they're not quite sure where to direct your attentions and your efforts. In terms of investigations, yeah, and you know you try to be mindful of, like, the cost of the person and Delays in diagnosis. And you know, in base invasive tests, you know as they they're not super prominent in neuropathy evaluations other than the EMG is. But you know you try and minimize that as best you can and they can get Convoluted.
Linda Petiot:Yeah, and I, I understand that, and that's one of the things that we do try to tell people is you know, at some point you just do have to give up looking, I guess, and Treat your symptoms as best you can. With what knowledge you could learn right right, right and to your point.
Michael Kentris:You know, finding that that group of specialists like the rehab specialists and a good physiotherapist and, you know, if the pain is quite bad, a good Psychotherapist as well to help you teach those, those techniques that all those pieces together can, can significantly improve quality of life For a lot of people, even if you, by objective measures, things haven't quote unquote gotten better. So I think that's something that we often neglect in our look for a quick fix. But yeah, there's.
Linda Petiot:Yeah, we always we try to tell people that there is no cure. And so, learning what you can to manage things yourself and give yourself back some quality of life, and I hate to say learn to live with it, but learn to manage it so that you can function because you can live with pain.
Michael Kentris:Right, yeah, yeah, I know Again right before. We're just recording or talking about how my back hurts more, a little, a few more days per week every year, and you know you try and stay off the inevitable, but you know that maybe 20, 30 years from now it's probably going to be there on a regular basis.
Linda Petiot:So Well, and if you're a person like me, who always is going and wanting to do things, learning to pace yourself, is super hard, I still can't do it. I was saying that I was feeling good yesterday and not as good today, and I know it's because I overdid it yesterday.
Michael Kentris:Right, which, yeah, it's such a common story, right? You know, I'm sure one of the things that your groups talk about, like the spoons theory, we only have for those who are familiar we only have our energy as represented by spoons, and if we spend all of our spoons on running to the grocery store, going to the bank, maybe taking the dogs for a walk, and now we're out of spoons, so now how am I going to get dinner made or what have you? So budgeting energy as well as time, becomes extra important for a lot of these kind of chronic problems, whether that's neuropathy or anything else that limits your function, potentially.
Linda Petiot:Yeah, yeah, you know. One message I kind of have in the back of my head for doctors and neurologists is please don't use the word catastrophizing. It's insulting for people, you know, when they're tied to their worst case scenario like that, they're doing that because they're not feeling like they're being heard. The healthcare system somehow isn't validating what they're going through, and so they're kind of at that limit where they end up doing that. I've had conversations fortunately only a couple with people who are catastrophizing, and it's tough. I'm a deer in the headlights, I'm not trained in this, I don't know what, so I just listen, honestly, that's you know. But it comes back to listening to the patient and what they're saying, because what they're experiencing is relevant.
Linda Petiot:And the healthcare provider needs to speak to that.
Michael Kentris:That is one of the hard things about pain. Right, there's no tests that can tell us how much of the pain is from the nerves, how much of it's from someone's emotional state, and in reality it's kind of semantics, right, it's all connected. So you feel what you feel and what can we do to help with that as best we can. But yeah, it is one of those things where that's why, when they talk about, like functional neurologic syndromes and other things, one of the things they don't really touch on is pain, because well, how would you differentiate that from pain that isn't related?
Michael Kentris:And it's one of these things they talk about in a lot of research, in the last, I want to say, decade or two, is the centralization of chronic pain, which it literally changes how our brains are wired and how we think about things, and sometimes the medications also that we use to treat those symptoms can also affect that. So we do have to be mindful of the fact that maybe they are quote unquote catastrophizing, but it is because they are in distress and it doesn't make their experiences any less valid. It might make it harder to communicate with somebody, but ultimately you're correct. Listening is usually a good first step.
Linda Petiot:And trying to see that whole mind, body stuff. I was one of these people. Oh my gosh, that's so woo, woo. I can't possibly do that. But our past president lent me a book. It was called the eight minute meditation and what it was was eight different meditations. You did it for a week for eight minutes each time. By the time I had finished going through the book, I could tell that my emotional regulation was a lot better. And now I'm going to say this is four years later.
Linda Petiot:I practice. I don't always, I'm not consistent, but I do practice fairly regularly and I can. Now, if I do get a pain, say down in my foot like a throbbing or something, I can, I can breathe through it and I can actually make it go away. And and there's. So we talked about medications, right? So 30 to 40% medication, and there's we'll take the pain away or mask it. And with mind, body stuff like mindfulness, meditation, there's studies that show we use 30%. But I saw one place where they were claiming up to 60% pain relief. And you think, okay, 30% for medication, 30% for meditation, that's 60% pain relief. And now I cut out sugar, I cut out alcohol, I cut out artificial sweeteners, I do all these other kinds of little things, and it can add up to enough pain relief that again you can function and you're you're taking control of your life that way.
Michael Kentris:Yeah, it is really impressive the power of the mind if we, if we train it and give it the tools to help us. So I think that's an excellent point. I know I, I'm in the same boat where you know I some days I'm better about my, my healthy habits both. You know exercise as well as you know like I'm more prayerful, prayerful meditation, so whatever form that takes for people but and there's certainly different forms of that kind of like the body awareness and things like that, or the breath meditation, but yeah, they can certainly have some good utility for for pain in particular.
Linda Petiot:Yeah, yeah, it just it all takes work right. It all takes commitment and getting into the habit of doing stuff or the habit of not doing stuff. I still love sugar.
Michael Kentris:And.
Linda Petiot:I pay for it every time, but.
Michael Kentris:I know I, just this last summer I I finally read Atomic Habits, because I've I've been working on that myself, right, how can I trick, quote, unquote, trick myself into doing things that are better for me and stop doing things that are not good for me? Mixed results so far, but you know, at least I'm sticking with it.
Linda Petiot:Yeah, I've, I've read that one too. There's another one. I can't remember the name. It's right behind me though it's there somewhere. But yeah, I do try to practice those as well, but I get so wrapped up in all the other things that I'm doing.
Michael Kentris:I just it's easy right and the hustle and bustle to let things slip.
Linda Petiot:Yeah, yeah, yeah.
Michael Kentris:Well, did you have any any final thoughts or things that you would want to share with our audience?
Linda Petiot:Just that the things people do for their nerve health going forward once they're diagnosed has the potential to make a difference. So in how fast it's progressing. There's lots of suggestions here that I've talked about, but and it's all kind of common sense sort of stuff some of it maybe not as much, but they're all important and and going to find. So we're in Canada and and we have folks from the States, but down in the States there's the Western Neuropathy Association as well and there's also the foundation for peripheral neuropathy. I think we're kind of like the three big ones.
Michael Kentris:Okay, so make sure to link all those organizations in the show notes as well.
Linda Petiot:Okay, that'd be awesome. Yeah, but of course I'm partial to the Calgary Neuropathy Association.
Michael Kentris:Of course, of course. That's probably the best one, of course.
Linda Petiot:Well, because we're smaller, I think we're a little more personal, but that's you know. I'm not basing that on anything.
Michael Kentris:Well, I appreciate you taking the time to come on talk with me, share your experiences with our audience and kind of some of the resources and strategies that are out there for folks who have neuropathy.
Linda Petiot:Well, thanks, and I can't thank you enough for having me on.
Michael Kentris:Thank you. Okay, so thank you.
