September 25, 2023 • 40 mins
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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The views expressed do not necessarily represent those of any associated organizations. The information in this podcast is for educational and informational purposes only and does not represent specific medical/health advice. Please consult with an appropriate health care professional for any medical/health advice.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Michael Kentris (00:02):
Hello and welcome back to the Neuro
Transmitters.
I'm your host, Dr.
Michael Kentris, and today I amjoined by the president of the
Calgary Neuropathy Association,Linda Petiot.
Welcome.
Linda Petiot (00:12):
Hi, thank you.
Thanks for having me today.
I'm very flattered that youagreed to talk to me.
Michael Kentris (00:18):
Oh no, I love hearing from folks and
everyone's perspective is alwaysso interesting, especially
because you did reach out aboutsomething we haven't talked
about on the podcast before,which is neuropathy.
So if you wouldn't mind givingus a little bit of your
background and kind of how youwound up being involved with the
advocacy and the organizationaround neuropathy, Sure, yeah.
Linda Petiot (00:38):
So I'm actually a retired information systems
business analyst, and what abusiness analyst does is we're
given a problem to be solved andI sort of would go out, listen
to all the stakeholders, all thesides, dig into things,
consolidate the information andthen present it to the people
who needed to know, so that theycould make decisions about how
(00:59):
they were going to solve theproblem, and that really has
translated into what I call myretirement gig.
This is what I'm doing in myretirement.
It's all volunteer.
I'm basically a serialvolunteer.
I've done it since I was a kid.
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 willprobably be because of CMT,
(01:24):
because that's what I have andthat's what I know, but I am
here about all kinds ofperipheral neuropathy.
For the association, the shortversion of our mission really is
to provide education andsupport for those affected by
peripheral neuropathy.
This year, we're kind offocusing on awareness, hence why
I'm here.
Excellent, like I said, 100%volunteer.
The association isnon-for-profit.
(01:45):
In Canada, we are kind of tied alittle bit with our local
medical school, trying to helpstudents learn a bit more.
That way.
We don't sell anything, wedon't endorse anything, we don't
charge to join.
We really just survive ondonations.
And we exist because there'skind of a gap with peripheral
neuropathy.
Like there's lots.
Well, there's some medications,but they're kind of limited,
(02:08):
and by that I mean there's notthat many to offer and there's
none that are specificallydesigned for peripheral
neuropathy.
They're usually taken fromsomething else and then used.
The relief is kind of onlypartial, not really complete,
and so people keep going back totheir doctors and saying, well,
it's not working, it's notworking, and the dose gets up
and up until they end up maxingout.
(02:28):
That doesn't happen toeverybody, but it does happen a
fair bit.
Michael Kentris (02:31):
Fairly often yeah.
Linda Petiot (02:33):
Yeah, so with our education stuff we really try to
use sort of thatbio-psycho-social model, with
our own spin towards peripheralneuropathy and self-management,
and we really have found that ifpeople know why something will
help, that really helps them bemotivated to use it.
Michael Kentris (02:52):
Yeah, kind of that empowerment through
knowledge.
Linda Petiot (02:54):
Exactly yeah, which?
Michael Kentris (02:56):
like you said, is a piece of the
bio-psycho-social model for alot of people, kind of using it
as a mechanism in that.
So you mentioned you have CMT.
Now that's certainly not themost common neuropathy that
folks present to their doctorswith, so I'm going to imagine
that might have been a littlebit of a convoluted path.
Linda Petiot (03:13):
Yeah, it was.
I got it from my dad and my dadhad complained for years about
his legs and the doctors shouldjust be able to fix my darn legs
.
And it wasn't until he was 77that he got diagnosed.
And when I took him to thedoctors, to the neurologist, and
the doctor said, well, do youhave any of these same symptoms?
(03:36):
And I said, well, yeah, I thinkI do.
Well, why don't you hop up onthe table there and we'll have a
quick peek?
So he did the pins and thereflexes and said you know you
should book an appointment withme.
So that's what I did and that'show I got diagnosed.
And then from there, you know,they tree out.
We tested my son and my sister.
What my son has, my sisterdoesn't.
(03:59):
So that's how I went.
Michael Kentris (04:02):
And as far as you know, obviously you know.
So CMT is one of those thingswhere it depends on if you're
kind of a lump or a splitter, assome people kind of think about
medical diagnostics.
Right, it's like things thatare similar.
You lump them together or doyou split things down to like
the very nitty gritty details.
So I know some people have morelike sensation loss, sensation
(04:24):
loss plus weakness, or sometimesjust weakness by itself, and it
depends a little bit on thevariant and so on.
Linda Petiot (04:31):
Yeah, I have sensation loss and muscle
weakness.
Michael Kentris (04:35):
The sensation loss doesn't bother me For me
that much yet, but the muscleweakness is definitely causing
falls and causing muscle crampsand spasms and stuff like that
and that was something youmentioned a little bit before we
started recording was thatneuropathy isn't necessarily all
(04:56):
of it, as much as it issometimes part of a spectrum of
things.
So I think everyone especiallydiabetes being a pretty frequent
cause for some people we knowthat kind of painful numbness is
very common, but the cramps andthings like that.
So what other things areworking?
Doing your advocacy work dopeople find are like these
(05:17):
symptoms that tend to mostaffect their quality of life and
kind of drive them for seekinghelp?
Linda Petiot (05:23):
Well, of course there's the pins and needles.
I was talking with a fellowlast night.
He says it feels like I'mwalking on glass all the time.
These things always seem to beworse at night and so the sleep
problems trying to get to sleepwhen your feet are burning it's
almost impossible.
So you'll see people up on chatrooms and stuff at three in the
(05:43):
morning because they can'tsleep.
All that pain that they'rehaving ends up in brain fog so
they have difficultyconcentrating and stuff like
that and tired and fatigue.
I'm very fortunate actually inthat I don't.
I consider mine mild basically,so I don't have the tiredness
(06:06):
that some people do.
But it can really affect theirability to function.
Even some people are in so muchpain they can't function at all
.
They can't hold down a jobanymore, Some can't even hold a
conversation at times and a lotof that can lead to depression
or anxiety.
I know, actually even I havesome anxiety having watched my
(06:29):
dad go from a healthy, strong,six foot four, like could do
whatever the heck he wanted, tonot being able to walk anymore,
and just in a matter of the last15 years of his life it really
kind of declined and causedproblems for him.
Michael Kentris (06:49):
Yeah, I remember the first time I met a
gentleman with CMT was when Iwas a medical student, and it's
almost exactly what youdescribed.
He was probably in his mid tolate 50s, but he was a this was
years and years ago, but not toage myself too much but he was a
very, like you said, verymuscled, well muscled guy.
(07:10):
But you would see he had muchsmaller hands and forearms and
his calves in particular, and hewas using bilateral ankle foot
orthotic devices or AFOs, but hewas still whatever he was able
to do.
He was still pushing himself asmuch.
So, like the rest of hismusculature was still, even
compared to myself today, 20pounds heavier than I was then,
(07:32):
he was still quite more muscledthan I am, and so so, yeah,
there definitely is that thatelement to it where some people
like, like you said, they kindof push their limits as long as
they're able to, but but yeah,it's definitely again right ties
back into that that mindset andbeing more proactive with your
health.
Linda Petiot (07:49):
Well, and he, he, he muscled his way through using
his upper body strength.
He by the by the end he reallycouldn't feel from the knees
below and so when he walked hisfoot would come forward, he'd
hyperextend his knee and lockhis leg in place and sort of
just inches way forward that way, but with a walker, you know,
when he got first got diagnosedI asked so is is he going to end
(08:13):
up in a wheelchair because ofthis?
And the neurologist said oh no,no, that's not a problem.
But you know, my dad also hadcancer treatment at one point.
He was on statins, he lovedsugar, had some degenerated
discs, so he actually did end upfor the last few months of his
life in a wheelchair because ofthe compounding effect of it all
(08:36):
together.
Michael Kentris (08:37):
It's easy in medicine to think of like this
one problem, that kind ofreductionist model where you're
like this is the single problembut nothing happens in a vacuum
and so so you're absolutelyright around cancer drugs or the
cancer itself causing morenerve damage.
If there's any diabetes orprediabetes, yeah, that makes it
a lot more sticky to teaseapart what's causing what, and
(08:58):
it certainly doesn't help avoidprogression.
And that's always the hard partis, at least from kind of the
evaluation standpoint, whenpeople come in with peripheral
neuropathy or symptomssuggestive of peripheral
neuropathy, like weakness ornumbness in the hands, feet, etc
.
There's just so many thingsthat can cause neuropathy that
you're really having to dig deep.
Linda Petiot (09:20):
And it's not necessarily one thing, right, dr
Justin Marchegiani?
Michael Kentris (09:22):
Exactly, dr.
Justin.
Linda Petiot (09:23):
Marchegiani, if you had neuropathy, because you
have lupus and then you alsohave arthritis and there's lots
of medications that arthritisfor rheumatoid arthritis anyway,
that can cause neuropathysymptoms as well, so it's like
the whole compounding effect isa real problem, dr Justin.
Michael Kentris (09:40):
Marchegiani, absolutely, from the kind of the
patient advocacy side, and thisis something when we had been
exchanging emails earlier youhad mentioned, and I do think
it's true, although myneuromuscular colleagues may
disagree with me but you know,neuropathy is not thought to be
like one of the you know flashyor sexy diseases and it doesn't
get the same kind of funding asthings like, you know, dementia
or which you know I hate to saythat's like flashy, but it
(10:02):
definitely is getting more interms of like resource funding
or you know things like that.
There's more prominent advocacygroups, you know, that are like
kind of taking those up andneuropathy, as you said is, it
is such a varied and such adisabling entity for a lot of
people that it really doesdeserve a little more attention,
dr.
Linda Petiot (10:22):
Julie L.
Michael Kentris (10:44):
Right, and it is one of those things where, or
even you know, in neurologytraining, at least in the United
States, the majority ofperipheral neuroanatomy
education usually comes kind ofin the latter half of training.
You know, a lot of the fronthalf is kind of front loaded
more in the hospital kind ofthis acute care setting, so that
a lot of people aren'tnecessarily, you know, and
obviously there's differencesbetween programs but a lot of
(11:06):
people aren't getting thoroughtraining, and so there may be
this, let's just say, discomfortwith more complicated
presentations of neuropathy.
h, for sure, One of the reasonswe want to connect with the
medical school here in Calgaryright now, not for a neurologist
, necessarily, but for themedical students.
They get one lecture for onehour and their entire training
(11:27):
on peripheral neuropathy.
And yeah, so I think it showssometimes.
Right, and if you look for reasons for
referrals, like there have beenmeta-analyses and studies done,
neuropathy or neuropathy-typesymptoms like numbness, weakness
, are some of the most commonreasons for referrals to
neurologists.
But you sometimes see folks whoare working in family medicine
(11:48):
or internal medicine in theprimary care setting and maybe
that, as you said, is all of thetraining they've gotten on how
to evaluate neuropathy and so itreally does leave a lot to be
desired in the kind of thediagnostic approach.
Linda Petiot (12:00):
Yeah, and you know patients when they first go in,
you know some of them it's beena long journey to get there,
sometimes as long as 18 monthsand they're going in with such
great expectations that andthey're just so excited to get
there and they're really hopingthey're going to get an answer
and they're going to get atreatment.
And then when they leave andyou know, sometimes they do get
(12:20):
an answer, like we did, Othertimes you don't, and it's really
okay.
Well, you're already onwhatever medication and so we're
just going to keep that andpeople go home feeling really
deflated, I guess would be theword.
Michael Kentris (12:34):
Yeah, it can be very underwhelming, you know,
looking at some of the data I'msure you're familiar with this
as well Some studies wouldsuggest that around 20% of
people with neuropathy, you know, ends up being idiopathic,
right, and I know we werethrowing that term around
earlier before we startedrecording as well, and it's
right, it's just medical use for, like, we don't know exactly
what caused it, but we'vechecked for at least a
(12:55):
reasonable number, well,depending on the situation, a
reasonable number of entities.
And yeah, that can be veryfrustrating, you know, because
you still don't know, like, whydid this happen?
Why me, right?
Linda Petiot (13:05):
Yeah, exactly.
Well, the number we've beengoing with is 30% of people with
peripheral neuropathy.
I'm not sure where that numbercame from.
I know for me, when we got,when my dad and I got diagnosed,
it kind of set off a wholebunch of light bulbs, right.
Oh, so that's why I couldn'trun as fast as the other kids,
or that's why my muscles hurt somuch, that's why I fall down so
(13:25):
much.
Michael Kentris (13:26):
Okay, yeah, not just clumsy right.
Linda Petiot (13:29):
Not just clumsy, which is what I kind of thought
it was.
But that diagnosis is soimportant 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'scausing this so I can stop doing
whatever that's causing it.
But there's other reasons too.
There's, you know.
(13:50):
If it is something likediabetes, well that's great.
I mean it's not great, but nowyou have something.
Okay, I have diabetes.
That's where my first focusshould be is managing my
diabetes, and that's the startof their self-care plan we
already talked about.
Well, maybe there's more thanone diagnosis, but you know
somebody who goes home, likewith CMT, the first thing you do
(14:13):
is you go home and you startGoogling stuff because you want
to know what that is For me withCMT.
I look at the studies.
There's different supportgroups, there's all kinds of
different changes maybe not withCMT, but that you can make for
yourself when you get diagnosedwith something, and so it just
(14:36):
gives your focus a place to go.
I guess that's moreconstructive than trying to find
out what caused it.
Michael Kentris (14:44):
Right, and I do remember this was probably when
I was a fellow and I think I'veprobably advanced a little bit
since then in the last number ofyears.
But you know they arecontinuing to research for, like
certain variations of CMT orother hereditary neuropathies,
and you know there are some.
I think they're only up toanimal models still at this
point.
But it is fascinating to lookat where we are now as opposed
(15:06):
to say 20 years ago, and whatwill 20 years from now look like
for people who have it at thatpoint.
And so there is, you know,maybe not for people who are
alive today, but in the futurethere certainly is some
promising things in the pipeline.
Going back to your point,having an answer, knowing if
there is a genetic cause orsomething a little more unusual
(15:27):
are the research, trials andways to, like you said, be
active in the community and bean advocate for these less
common causes?
Linda Petiot (15:36):
Exactly, yeah, and who do you want on your team,
right?
Right, and I have a lot ofdoctors who's you know?
I remember the neurologistmentioning something about the
neuro muscular clinic here intown and he didn't make a
referral.
But I had to go back to my GPand ask her for a referral and
(15:56):
she was new in the city so shedidn't know.
But anyway, asking for thatreferral to the different kinds
of, like a physiatrist orwhatever it is, or let's say,
you have Lyme disease, maybesomebody who specializes in Lyme
, if you don't already have thatright?
Michael Kentris (16:10):
Yeah, and that is the thing is that there are
these multidisciplinary clinicsout there.
Usually, you know, at the moreacademic areas which certainly
in parts of Canada, parts of theUS, you may be 50, 100 miles
away from some of these places,maybe more in some areas of the
country, and just getting therecan be very challenging in the
first place.
Linda Petiot (16:31):
Yeah, yeah, exactly the fellow I was talking
to yesterday.
He lives in a city two hoursaway but there's no neurologist
there, so he got referred tosomebody up here in Calgary,
which you know.
If you're going to gettreatment, that's a long ways to
go if you have to go regularly.
Michael Kentris (16:46):
Right and especially I assume he has
neuropathy, so driving cansometimes for people with
neuropathy if you don't have thespecial adaptations on your car
might be very challenging.
Linda Petiot (16:57):
Yeah, and even with the fatigue that comes in.
You have so much energy in aday and if you're using it up
getting to your appointments bythe time you get there it's hard
to even focus on what thedoctor is telling you.
Michael Kentris (17:07):
Yeah.
So, talking with the folksyou've talked with and your own
personal experience as well,what are the things that you
wish your GP or your firstneurologist would have keyed in
on, would have talked with youabout?
What are the things that wouldhave been, let's just say, made
that process from an initialdiagnosis to like what's the
(17:29):
plan going forward more smooth?
Linda Petiot (17:35):
I'd say there's things that maybe they could be
doing, like the neuropathymedications, for example,
knowing that.
So we're going to give you thismedication, but just so you
know, it's only going to helpyou 30 to 40% of relief and no
more than that.
So chances are you're not goingto find full relief.
The best results come fromlearning techniques Right.
(17:57):
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.
You take and it's worse at night.
So you take VIX Vapour Rub andyou put it on your feet and of
course it's got the menthol init and the camphor.
So that's got some kind ofcooling.
(18:18):
That's going on.
Nerves can only send onemessage at a time.
So I'm told so so that that canwork by itself for some people.
If it's not enough, you can puta fan that's blowing on your
feet with the VIX Vapour Rub andthat really helps.
And if that still doesn't work,you can make the fan oscillate
and that helps even more the fanoscillating.
Michael Kentris (18:37):
that's a new trick for me.
I'll have to keep that one inmind.
Linda Petiot (18:39):
Yeah so, but people, some people will do some
of the craziest things.
I remember sitting with my dadand this was long before we knew
he had CMT.
His feet were burning.
We were sitting out in thebackyard 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 goodidea.
Michael Kentris (19:02):
It's a restante .
Linda Petiot (19:04):
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 nicewater and stuff like that and I
just, yeah, you're just goingto do more damage, but they
don't understand these kinds oflittle things that are hurting
them Right, and I don't know ifit's over the counter in Canada
as well, but there's somecapsaicin creams and things like
that.
Michael Kentris (19:24):
Like other topical agents.
Some people use compoundingpharmacies for different
mixtures of different drugs andthings like that, with variable
results.
Linda Petiot (19:33):
Yeah, but yeah, it is yeah, go ahead.
Yeah, sorry.
Michael Kentris (19:37):
No, that's fine .
Linda Petiot (19:38):
That's.
One of the things that I thinkI'd like to see get tried more
often is the compounding drugs,because they help a lot of
people and they've got themedications like ketamine that
take the pain away completely.
Another one and of course it'snot legal everywhere in the US,
but medications with medicalcannabis in them.
(19:58):
They help a lot of people andit doesn't have to be an oral
medication.
It can again be a topical thathelps.
Michael Kentris (20:07):
Yeah, no very good points, and I always find.
I think back to one person Itook care of in the past in
particular, who had multipledifferent reasons for neuropathy
.
She had had hepatitis infectionas well as diabetes and had a
heck of a time getting her bloodsugar under control, and so we
were trying to get her somerelief and, like so many people
(20:29):
around me, started out withgabapentin and she kind of
developed tolerance issues withthat.
So we ended up switching topregabalin or Lyrica and she
came back six months later andwe had slowly bumped up, but it
had been a few months since Ihad seen her and she had gained
like 20, 30 pounds.
I'm just like I'm doing themost terrible thing for her to
(20:50):
help her control her diabetes,and that's it's right.
It's one of those things wedon't think about, like weight
gain, especially for folks whohave diabetic neuropathy, is one
of those really bad elements.
That that those drugs can makeworse.
Right, we're trying to controlsymptoms, but we're kind of
worsening the root cause.
Linda Petiot (21:04):
Yeah yeah, gabapentin's kind of an
interesting one.
We had a neurologist come speak.
This was a few years back Ithink he's retired now but he
said that gabapentin became thegold standard for neuropathy,
based on a 16 person study.
But they had nothing else, sothat's what we all went with.
Michael Kentris (21:23):
Yeah, and now it's.
Now it's generic, so it's niceand inexpensive.
Linda Petiot (21:26):
Yeah, which is good.
Michael Kentris (21:28):
Yes, it works somewhat for most people right.
Linda Petiot (21:32):
For some people the side effects are so bad that
they'd rather just deal withthe neuropathy.
I've heard that many times.
Michael Kentris (21:38):
Yes, me too.
Yeah, and that's that's alwaysa tricky bit.
And then I always I remember anarticle I read a year or two
ago was kind of looking at likea pathway for different
medications and I think some area little more neglected than
others in terms of like thedifferent antidepressant
families of medications like theSNRIs, like deloxatine and
(21:59):
vanilla vaccine, and then onethat I started using a few years
ago which is more of asupplement in people who don't
have reflux issues with theirstomach or things like that, is
alpha lipoic acid, which youprobably come across as well.
I think that one's a littleunderutilized in some
populations.
Linda Petiot (22:18):
That's well within our community, that neuropathy
patients, that's sort of thefirst supplement people want to
go to.
Yeah it really is.
Yeah, there's a.
We have a whole list.
Michael Kentris (22:30):
Right right.
Linda Petiot (22:31):
You know, for me with CMT, one of the worst I
used to get was like the reallystrong electrical shock randomly
throughout my body.
I remember sitting in a meetingwith 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 whatwas that all about?
Michael Kentris (22:51):
Yeah.
Linda Petiot (22:51):
And I didn't know I had CMT.
I didn't know.
I thought everybody got thesethings.
So I asked her well, don't youget those?
No, okay, and didn't think muchmore about it then.
But yeah, it's B12, vitamin B12and actually a complex is.
I ended up trying a fewdifferent before I got to that
one, but it's all but eliminatedthose for me, unless I run out
(23:14):
and then within about a weekthey start coming back.
Michael Kentris (23:16):
Wow, interesting.
Yeah, it's different people,different responses to
relatively benign things issometimes just it leaves you a
little perplexed, right?
Yeah, we always.
We think we know something andyou know someone comes along and
just like, well, maybe not somuch, but in terms of like
(23:37):
people who are like maybe theygot some numbness in their feet
and their approach in their GPto get it worked out.
What are the things that tendto be done well, tend to be done
less well, areas forimprovement for for this
official evaluation.
Linda Petiot (23:59):
Well, don't assume it just affects hands and feet,
first of all because for lotsit doesn't.
I'd say, look at a person'smedical medical history and what
drugs that they're on and seeif there's anything that are on
(24:20):
the neurotoxic list.
Because again, if you have, say, lupus and then you're given
statins, well now you've got twothings causing neuropathy.
Potentially right, statinsdon't cause neuropathy for
everybody, but I think ifsomebody already has neuropathy,
you've got already damagednerves and something that is
neurotoxic is something thatshould maybe be looked at.
(24:43):
And with statin I use statinsbecause I'm on statins as well
there's studies that show someof them aren't tied to
neuropathy at all, or some aretied 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.
(25:06):
I've also seen studies wherevitamin B3 combined with your
statins can help lessen theeffect.
So things like that, looking atthat and understanding those
kinds of things.
If it's an neurologist andthey're going to be reporting
back to the GP, mention thatbiopsychosocial model.
(25:28):
We have people who are in verydire straits because of their
neuropathy.
Within the last few years we'vehad within our sort of little
circle of people three peoplewho have committed suicide
because their pain is so bad.
It's awful to hear about and toknow what these people are
(25:52):
going through.
I would also recommend that theyTalk to people about looking
for support groups and and youknow, a support group doesn't
have to be a neuropathy supportgroup or a Diabetes support
group or anything like that.
If you can go to art therapy orYoga therapy, or we have one
(26:16):
lady who who says her swimmingclub has saved her life because
first of all, she's gettingexercise but she's also got a
community that she can relate toand talk to.
There's all.
There's so many ways to helpourselves, but Quite often we
felt feel like we're left alonewith this to deal with, because
the medic, you know that's againsetting the expectations.
(26:37):
Medications aren't gonna helpas much as you might think so.
There's other things you needto look for.
Absolutely I think I might havediverged from your question.
Michael Kentris (26:46):
That's okay.
It's a free form, free-formconversation.
So so let's say, and I'm surethis is probably not an uncommon
story, but we have someone whogoes in to the GP and it's like
oh, you know you, you haveneuropathy and then we're just
gonna refer you to neurologistand, like you said, right, the
(27:07):
wait times can sometimes bequite long.
What should they be pushing for?
Right, I know, I mean, I knowwhat I would say as the
neurologist, but but what so?
Our a lot of the GP is usuallyroutinely ordering like some of
the blood work and and testingthat we would normally look for
for evaluating, like kind of theOpening salvo for investigating
(27:29):
neuropathy, or is there isthere some things that are a
little Left a chance.
Linda Petiot (27:34):
I, I think they are.
I know there was one fellow whovolunteered with us, for
example.
He went to the doctors becausehe had neuropathy and that's how
they discovered he had diabetes.
Right.
So I would expect becausecancer Treatments and diabetes
are the two highest causes thata GP, before they sent you off
(27:57):
to a neurologist Especially ifyou had to wait a long time they
would test for things like that.
Well and and and, look at yourhistory.
So if they, if they can seethat you've had some of the
drugs or Cipro is another, it'san antibiotic but that has has
been known for causingneuropathy you can sort of look
through and see there's thingsthat the GP can do.
(28:19):
Is basically what I'm saying.
And, yeah, I think they do dosome of that, especially if it's
a.
The top of the list is diabetes.
So Right, it's an easy one tofind, I would think, and there's
a test for it.
A lot of the times there aren'ttests, right?
Michael Kentris (28:33):
Very true for conditions.
Right, you start getting downthat list now.
We're, you know, checked for,like you said, diabetes, vitamin
deficiencies, you know, madesure to screen for that history
of exposure to different drugsor cancers and so forth then, a
lot of times you're kind oftalking about like genetic
testing, which can be expensivesometimes, or Sometimes like
(28:55):
skin fiber, skin nerve fiberbiopsies or EMG is a nerve
conduction studies and which arenot particularly pleasant,
especially if you already havepain.
But yeah, it starts to get intothe weeds pretty quickly after
you kind of exhaust that top oflist.
Yeah, number of items.
Linda Petiot (29:11):
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 onFacebook in a group.
That's particularly good.
What would you want your doctorto know about neuropathy?
(29:32):
And the one fellow was talkingabout his mercury fillings.
So obviously he was older buthe couldn't get anybody to
listen to him and so he had.
He finally just gave up andhave the tooth pulled and then
somehow he says it got better.
So there's going to be strangethings, but listening to,
(29:54):
listening to the patient, ifthey suspect maybe they don't
have it quite right, but maybethey have something in the right
area.
So yeah, I've heard a couple ofstories like that.
Michael Kentris (30:05):
There are.
There are always those strangeones and you're never quite sure
.
It's funny you mentioned that Ihad a the gentleman I took care
of years in the past who whoused to make those kinds of
fillings and he had years laterdeveloped Neuropathy.
His ended up being autoimmune.
But but we were, you know, atthe first few months we're like,
is this related to it?
It's like he hasn't been doingit for like over a decade, it
(30:26):
you know.
But yeah, it's one of thosethings where there's just so
many clauses once you get intothose weeds that especially if
you don't have a definite answer, you kind of Sometimes they're
not quite sure where to directyour attentions and your efforts
.
In terms of investigations,yeah, and you know you try to be
mindful of, like, the cost ofthe person and Delays in
(30:49):
diagnosis.
And you know, in base invasivetests, you know as they they're
not super prominent inneuropathy evaluations other
than the EMG is.
But you know you try andminimize that as best you can
and they can get Convoluted.
Linda Petiot (31:04):
Yeah, and I, I understand that, and that's one
of the things that we do try totell people is you know, at some
point you just do have to giveup looking, I guess, and Treat
your symptoms as best you can.
With what knowledge you couldlearn right right, right and to
your point.
Michael Kentris (31:23):
You know, finding that that group of
specialists like the rehabspecialists and a good
physiotherapist and, you know,if the pain is quite bad, a good
Psychotherapist as well to helpyou teach those, those
techniques that all those piecestogether can, can significantly
improve quality of life For alot of people, even if you, by
objective measures, thingshaven't quote unquote gotten
(31:45):
better.
So I think that's somethingthat we often neglect in our
look for a quick fix.
But yeah, there's.
Linda Petiot (31:52):
Yeah, we always we try to tell people that there
is no cure.
And so, learning what you canto manage things yourself and
give yourself back some qualityof life, and I hate to say learn
to live with it, but learn tomanage it so that you can
function because you can livewith pain.
Michael Kentris (32:14):
Right, yeah, yeah, I know Again right before.
We're just recording or talkingabout how my back hurts more, a
little, a few more days perweek every year, and you know
you try and stay off theinevitable, but you know that
maybe 20, 30 years from now it'sprobably going to be there on a
regular basis.
Linda Petiot (32:32):
So Well, and if you're a person like me, who
always is going and wanting todo things, learning to pace
yourself, is super hard, I stillcan't do it.
I was saying that I was feelinggood yesterday and not as good
today, and I know it's because Ioverdid it yesterday.
Michael Kentris (32:50):
Right, which, yeah, it's such a common story,
right?
You know, I'm sure one of thethings that your groups talk
about, like the spoons theory,we only have for those who are
familiar we only have our energyas represented by spoons, and
if we spend all of our spoons onrunning to the grocery store,
going to the bank, maybe takingthe dogs for a walk, and now
we're out of spoons, so now howam I going to get dinner made or
what have you?
(33:11):
So budgeting energy as well astime, becomes extra important
for a lot of these kind ofchronic problems, whether that's
neuropathy or anything elsethat limits your function,
potentially.
Linda Petiot (33:21):
Yeah, yeah, you know.
One message I kind of have inthe back of my head for doctors
and neurologists is please don'tuse the word catastrophizing.
It's insulting for people, youknow, when they're tied to their
worst case scenario like that,they're doing that because
(33:42):
they're not feeling like they'rebeing heard.
The healthcare system somehowisn't validating what they're
going through, and so they'rekind of at that limit where they
end up doing that.
I've had conversationsfortunately 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
(34:03):
know what, so I just listen,honestly, that's you know.
But it comes back to listeningto the patient and what they're
saying, because what they'reexperiencing is relevant.
And the healthcare providerneeds to speak to that.
Michael Kentris (34:21):
That is one of the hard things about pain.
Right, there's no tests thatcan tell us how much of the pain
is from the nerves, how much ofit's from someone's emotional
state, and in reality it's kindof semantics, right, it's all
connected.
So you feel what you feel andwhat can we do to help with that
as best we can.
But yeah, it is one of thosethings where that's why, when
(34:44):
they talk about, like functionalneurologic syndromes and other
things, one of the things theydon't really touch on is pain,
because well, how would youdifferentiate that from pain
that isn't related?
And it's one of these thingsthey talk about in a lot of
research, in the last, I want tosay, decade or two, is the
centralization of chronic pain,which it literally changes how
(35:06):
our brains are wired and how wethink about things, and
sometimes the medications alsothat we use to treat those
symptoms can also affect that.
So we do have to be mindful ofthe fact that maybe they are
quote unquote catastrophizing,but it is because they are in
distress and it doesn't maketheir experiences any less valid
.
It might make it harder tocommunicate with somebody, but
(35:28):
ultimately you're correct.
Listening is usually a goodfirst step.
Linda Petiot (35:31):
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 mea book.
It was called the eight minutemeditation and what it was was
eight different meditations.
You did it for a week for eightminutes each time.
(35:52):
By the time I had finishedgoing through the book, I could
tell that my emotionalregulation was a lot better.
And now I'm going to say thisis four years later.
I practice.
I don't always, I'm notconsistent, but I do practice
fairly regularly and I can.
Now, if I do get a pain, saydown in my foot like a throbbing
or something, I can, I canbreathe through it and I can
(36:15):
actually make it go away.
And and there's.
So we talked about medications,right?
So 30 to 40% medication, andthere's we'll take the pain away
or mask it.
And with mind, body stuff likemindfulness, meditation, there's
studies that show we use 30%.
(36:36):
But I saw one place where theywere claiming up to 60% pain
relief.
And you think, okay, 30% formedication, 30% for meditation,
that's 60% pain relief.
And now I cut out sugar, I cutout alcohol, I cut out
artificial sweeteners, I do allthese other kinds of little
(36:56):
things, and it can add up toenough pain relief that again
you can function and you'reyou're taking control of your
life that way.
Michael Kentris (37:04):
Yeah, it is really impressive the power of
the mind if we, if we train itand give it the tools to help us
.
So I think that's an excellentpoint.
I know I, I'm in the same boatwhere you know I some days I'm
better about my, my healthyhabits both.
You know exercise as well asyou know like I'm more prayerful
(37:24):
, prayerful meditation, sowhatever form that takes for
people but and there's certainlydifferent forms of that kind of
like the body awareness andthings like that, or the breath
meditation, but yeah, they cancertainly have some good utility
for for pain in particular.
Linda Petiot (37:40):
Yeah, yeah, it just it all takes work right.
It all takes commitment andgetting into the habit of doing
stuff or the habit of not doingstuff.
I still love sugar.
Michael Kentris (37:53):
And.
Linda Petiot (37:53):
I pay for it every time, but.
Michael Kentris (37:56):
I know I, just this last summer I I finally
read Atomic Habits, because I'veI've been working on that
myself, right, how can I trick,quote, unquote, trick myself
into doing things that arebetter for me and stop doing
things that are not good for me?
Mixed results so far, but youknow, at least I'm sticking with
it.
Linda Petiot (38:14):
Yeah, I've, I've read that one too.
There's another one.
I can't remember the name.
It's right behind me thoughit's there somewhere.
But yeah, I do try to practicethose as well, but I get so
wrapped up in all the otherthings that I'm doing.
Michael Kentris (38:27):
I just it's easy right and the hustle and
bustle to let things slip.
Linda Petiot (38:33):
Yeah, yeah, yeah.
Michael Kentris (38:35):
Well, did you have any any final thoughts or
things that you would want toshare with our audience?
Linda Petiot (38:42):
Just that the things people do for their nerve
health going forward oncethey're diagnosed has the
potential to make a difference.
So in how fast it's progressing.
There's lots of suggestionshere that I've talked about, but
and it's all kind of commonsense sort of stuff some of it
maybe not as much, but they'reall important and and going to
(39:04):
find.
So we're in Canada and and wehave folks from the States, but
down in the States there's theWestern Neuropathy Association
as well and there's also thefoundation for peripheral
neuropathy.
I think we're kind of like thethree big ones.
Michael Kentris (39:17):
Okay, so make sure to link all those
organizations in the show notesas well.
Linda Petiot (39:21):
Okay, that'd be awesome.
Yeah, but of course I'm partialto the Calgary Neuropathy
Association.
Michael Kentris (39:25):
Of course, of course.
That's probably the best one,of course.
Linda Petiot (39:28):
Well, because we're smaller, I think we're a
little more personal, but that'syou know.
I'm not basing that on anything.
Michael Kentris (39:38):
Well, I appreciate you taking the time
to come on talk with me, shareyour experiences with our
audience and kind of some of theresources and strategies that
are out there for folks who haveneuropathy.
Linda Petiot (39:46):
Well, thanks, and I can't thank you enough for
having me on.
Michael Kentris (39:50):
Thank you.
Okay, so thank you.
Hello and welcome back to the Neuro
Transmitters.
I'm your host, Dr.
Michael Kentris, and today I amjoined by the president of the
Calgary Neuropathy Association,Linda Petiot.
Welcome.
Linda Petiot (00:12):
Hi, thank you.
Thanks for having me today.
I'm very flattered that youagreed to talk to me.
Michael Kentris (00:18):
Oh no, I love hearing from folks and
everyone's perspective is alwaysso interesting, especially
because you did reach out aboutsomething we haven't talked
about on the podcast before,which is neuropathy.
So if you wouldn't mind givingus a little bit of your
background and kind of how youwound up being involved with the
advocacy and the organizationaround neuropathy, Sure, yeah.
Linda Petiot (00:38):
So I'm actually a retired information systems
business analyst, and what abusiness analyst does is we're
given a problem to be solved andI sort of would go out, listen
to all the stakeholders, all thesides, dig into things,
consolidate the information andthen present it to the people
who needed to know, so that theycould make decisions about how
(00:59):
they were going to solve theproblem, and that really has
translated into what I call myretirement gig.
This is what I'm doing in myretirement.
It's all volunteer.
I'm basically a serialvolunteer.
I've done it since I was a kid.
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 willprobably be because of CMT,
(01:24):
because that's what I have andthat's what I know, but I am
here about all kinds ofperipheral neuropathy.
For the association, the shortversion of our mission really is
to provide education andsupport for those affected by
peripheral neuropathy.
This year, we're kind offocusing on awareness, hence why
I'm here.
Excellent, like I said, 100%volunteer.
The association isnon-for-profit.
(01:45):
In Canada, we are kind of tied alittle bit with our local
medical school, trying to helpstudents learn a bit more.
That way.
We don't sell anything, wedon't endorse anything, we don't
charge to join.
We really just survive ondonations.
And we exist because there'skind of a gap with peripheral
neuropathy.
Like there's lots.
Well, there's some medications,but they're kind of limited,
(02:08):
and by that I mean there's notthat many to offer and there's
none that are specificallydesigned for peripheral
neuropathy.
They're usually taken fromsomething else and then used.
The relief is kind of onlypartial, not really complete,
and so people keep going back totheir doctors and saying, well,
it's not working, it's notworking, and the dose gets up
and up until they end up maxingout.
(02:28):
That doesn't happen toeverybody, but it does happen a
fair bit.
Michael Kentris (02:31):
Fairly often yeah.
Linda Petiot (02:33):
Yeah, so with our education stuff we really try to
use sort of thatbio-psycho-social model, with
our own spin towards peripheralneuropathy and self-management,
and we really have found that ifpeople know why something will
help, that really helps them bemotivated to use it.
Michael Kentris (02:52):
Yeah, kind of that empowerment through
knowledge.
Linda Petiot (02:54):
Exactly yeah, which?
Michael Kentris (02:56):
like you said, is a piece of the
bio-psycho-social model for alot of people, kind of using it
as a mechanism in that.
So you mentioned you have CMT.
Now that's certainly not themost common neuropathy that
folks present to their doctorswith, so I'm going to imagine
that might have been a littlebit of a convoluted path.
Linda Petiot (03:13):
Yeah, it was.
I got it from my dad and my dadhad complained for years about
his legs and the doctors shouldjust be able to fix my darn legs
.
And it wasn't until he was 77that he got diagnosed.
And when I took him to thedoctors, to the neurologist, and
the doctor said, well, do youhave any of these same symptoms?
(03:36):
And I said, well, yeah, I thinkI do.
Well, why don't you hop up onthe table there and we'll have a
quick peek?
So he did the pins and thereflexes and said you know you
should book an appointment withme.
So that's what I did and that'show I got diagnosed.
And then from there, you know,they tree out.
We tested my son and my sister.
What my son has, my sisterdoesn't.
(03:59):
So that's how I went.
Michael Kentris (04:02):
And as far as you know, obviously you know.
So CMT is one of those thingswhere it depends on if you're
kind of a lump or a splitter, assome people kind of think about
medical diagnostics.
Right, it's like things thatare similar.
You lump them together or doyou split things down to like
the very nitty gritty details.
So I know some people have morelike sensation loss, sensation
(04:24):
loss plus weakness, or sometimesjust weakness by itself, and it
depends a little bit on thevariant and so on.
Linda Petiot (04:31):
Yeah, I have sensation loss and muscle
weakness.
Michael Kentris (04:35):
The sensation loss doesn't bother me For me
that much yet, but the muscleweakness is definitely causing
falls and causing muscle crampsand spasms and stuff like that
and that was something youmentioned a little bit before we
started recording was thatneuropathy isn't necessarily all
(04:56):
of it, as much as it issometimes part of a spectrum of
things.
So I think everyone especiallydiabetes being a pretty frequent
cause for some people we knowthat kind of painful numbness is
very common, but the cramps andthings like that.
So what other things areworking?
Doing your advocacy work dopeople find are like these
(05:17):
symptoms that tend to mostaffect their quality of life and
kind of drive them for seekinghelp?
Linda Petiot (05:23):
Well, of course there's the pins and needles.
I was talking with a fellowlast night.
He says it feels like I'mwalking on glass all the time.
These things always seem to beworse at night and so the sleep
problems trying to get to sleepwhen your feet are burning it's
almost impossible.
So you'll see people up on chatrooms and stuff at three in the
(05:43):
morning because they can'tsleep.
All that pain that they'rehaving ends up in brain fog so
they have difficultyconcentrating and stuff like
that and tired and fatigue.
I'm very fortunate actually inthat I don't.
I consider mine mild basically,so I don't have the tiredness
(06:06):
that some people do.
But it can really affect theirability to function.
Even some people are in so muchpain they can't function at all
.
They can't hold down a jobanymore, Some can't even hold a
conversation at times and a lotof that can lead to depression
or anxiety.
I know, actually even I havesome anxiety having watched my
(06:29):
dad go from a healthy, strong,six foot four, like could do
whatever the heck he wanted, tonot being able to walk anymore,
and just in a matter of the last15 years of his life it really
kind of declined and causedproblems for him.
Michael Kentris (06:49):
Yeah, I remember the first time I met a
gentleman with CMT was when Iwas a medical student, and it's
almost exactly what youdescribed.
He was probably in his mid tolate 50s, but he was a this was
years and years ago, but not toage myself too much but he was a
very, like you said, verymuscled, well muscled guy.
(07:10):
But you would see he had muchsmaller hands and forearms and
his calves in particular, and hewas using bilateral ankle foot
orthotic devices or AFOs, but hewas still whatever he was able
to do.
He was still pushing himself asmuch.
So, like the rest of hismusculature was still, even
compared to myself today, 20pounds heavier than I was then,
(07:32):
he was still quite more muscledthan I am, and so so, yeah,
there definitely is that thatelement to it where some people
like, like you said, they kindof push their limits as long as
they're able to, but but yeah,it's definitely again right ties
back into that that mindset andbeing more proactive with your
health.
Linda Petiot (07:49):
Well, and he, he, he muscled his way through using
his upper body strength.
He by the by the end he reallycouldn't feel from the knees
below and so when he walked hisfoot would come forward, he'd
hyperextend his knee and lockhis leg in place and sort of
just inches way forward that way, but with a walker, you know,
when he got first got diagnosedI asked so is is he going to end
(08:13):
up in a wheelchair because ofthis?
And the neurologist said oh no,no, that's not a problem.
But you know, my dad also hadcancer treatment at one point.
He was on statins, he lovedsugar, had some degenerated
discs, so he actually did end upfor the last few months of his
life in a wheelchair because ofthe compounding effect of it all
(08:36):
together.
Michael Kentris (08:37):
It's easy in medicine to think of like this
one problem, that kind ofreductionist model where you're
like this is the single problembut nothing happens in a vacuum
and so so you're absolutelyright around cancer drugs or the
cancer itself causing morenerve damage.
If there's any diabetes orprediabetes, yeah, that makes it
a lot more sticky to teaseapart what's causing what, and
(08:58):
it certainly doesn't help avoidprogression.
And that's always the hard partis, at least from kind of the
evaluation standpoint, whenpeople come in with peripheral
neuropathy or symptomssuggestive of peripheral
neuropathy, like weakness ornumbness in the hands, feet, etc
.
There's just so many thingsthat can cause neuropathy that
you're really having to dig deep.
Linda Petiot (09:20):
And it's not necessarily one thing, right, dr
Justin Marchegiani?
Michael Kentris (09:22):
Exactly, dr.
Justin.
Linda Petiot (09:23):
Marchegiani, if you had neuropathy, because you
have lupus and then you alsohave arthritis and there's lots
of medications that arthritisfor rheumatoid arthritis anyway,
that can cause neuropathysymptoms as well, so it's like
the whole compounding effect isa real problem, dr Justin.
Michael Kentris (09:40):
Marchegiani, absolutely, from the kind of the
patient advocacy side, and thisis something when we had been
exchanging emails earlier youhad mentioned, and I do think
it's true, although myneuromuscular colleagues may
disagree with me but you know,neuropathy is not thought to be
like one of the you know flashyor sexy diseases and it doesn't
get the same kind of funding asthings like, you know, dementia
or which you know I hate to saythat's like flashy, but it
(10:02):
definitely is getting more interms of like resource funding
or you know things like that.
There's more prominent advocacygroups, you know, that are like
kind of taking those up andneuropathy, as you said is, it
is such a varied and such adisabling entity for a lot of
people that it really doesdeserve a little more attention,
dr.
Linda Petiot (10:22):
Julie L.
Michael Kentris (10:44):
Right, and it is one of those things where, or
even you know, in neurologytraining, at least in the United
States, the majority ofperipheral neuroanatomy
education usually comes kind ofin the latter half of training.
You know, a lot of the fronthalf is kind of front loaded
more in the hospital kind ofthis acute care setting, so that
a lot of people aren'tnecessarily, you know, and
obviously there's differencesbetween programs but a lot of
(11:06):
people aren't getting thoroughtraining, and so there may be
this, let's just say, discomfortwith more complicated
presentations of neuropathy.
h, for sure, One of the reasonswe want to connect with the
medical school here in Calgaryright now, not for a neurologist
, necessarily, but for themedical students.
They get one lecture for onehour and their entire training
(11:27):
on peripheral neuropathy.
And yeah, so I think it showssometimes.
Right, and if you look for reasons for
referrals, like there have beenmeta-analyses and studies done,
neuropathy or neuropathy-typesymptoms like numbness, weakness
, are some of the most commonreasons for referrals to
neurologists.
But you sometimes see folks whoare working in family medicine
(11:48):
or internal medicine in theprimary care setting and maybe
that, as you said, is all of thetraining they've gotten on how
to evaluate neuropathy and so itreally does leave a lot to be
desired in the kind of thediagnostic approach.
Linda Petiot (12:00):
Yeah, and you know patients when they first go in,
you know some of them it's beena long journey to get there,
sometimes as long as 18 monthsand they're going in with such
great expectations that andthey're just so excited to get
there and they're really hopingthey're going to get an answer
and they're going to get atreatment.
And then when they leave andyou know, sometimes they do get
(12:20):
an answer, like we did, Othertimes you don't, and it's really
okay.
Well, you're already onwhatever medication and so we're
just going to keep that andpeople go home feeling really
deflated, I guess would be theword.
Michael Kentris (12:34):
Yeah, it can be very underwhelming, you know,
looking at some of the data I'msure you're familiar with this
as well Some studies wouldsuggest that around 20% of
people with neuropathy, you know, ends up being idiopathic,
right, and I know we werethrowing that term around
earlier before we startedrecording as well, and it's
right, it's just medical use for, like, we don't know exactly
what caused it, but we'vechecked for at least a
(12:55):
reasonable number, well,depending on the situation, a
reasonable number of entities.
And yeah, that can be veryfrustrating, you know, because
you still don't know, like, whydid this happen?
Why me, right?
Linda Petiot (13:05):
Yeah, exactly.
Well, the number we've beengoing with is 30% of people with
peripheral neuropathy.
I'm not sure where that numbercame from.
I know for me, when we got,when my dad and I got diagnosed,
it kind of set off a wholebunch of light bulbs, right.
Oh, so that's why I couldn'trun as fast as the other kids,
or that's why my muscles hurt somuch, that's why I fall down so
(13:25):
much.
Michael Kentris (13:26):
Okay, yeah, not just clumsy right.
Linda Petiot (13:29):
Not just clumsy, which is what I kind of thought
it was.
But that diagnosis is soimportant 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'scausing this so I can stop doing
whatever that's causing it.
But there's other reasons too.
There's, you know.
(13:50):
If it is something likediabetes, well that's great.
I mean it's not great, but nowyou have something.
Okay, I have diabetes.
That's where my first focusshould be is managing my
diabetes, and that's the startof their self-care plan we
already talked about.
Well, maybe there's more thanone diagnosis, but you know
somebody who goes home, likewith CMT, the first thing you do
(14:13):
is you go home and you startGoogling stuff because you want
to know what that is For me withCMT.
I look at the studies.
There's different supportgroups, there's all kinds of
different changes maybe not withCMT, but that you can make for
yourself when you get diagnosedwith something, and so it just
(14:36):
gives your focus a place to go.
I guess that's moreconstructive than trying to find
out what caused it.
Michael Kentris (14:44):
Right, and I do remember this was probably when
I was a fellow and I think I'veprobably advanced a little bit
since then in the last number ofyears.
But you know they arecontinuing to research for, like
certain variations of CMT orother hereditary neuropathies,
and you know there are some.
I think they're only up toanimal models still at this
point.
But it is fascinating to lookat where we are now as opposed
(15:06):
to say 20 years ago, and whatwill 20 years from now look like
for people who have it at thatpoint.
And so there is, you know,maybe not for people who are
alive today, but in the futurethere certainly is some
promising things in the pipeline.
Going back to your point,having an answer, knowing if
there is a genetic cause orsomething a little more unusual
(15:27):
are the research, trials andways to, like you said, be
active in the community and bean advocate for these less
common causes?
Linda Petiot (15:36):
Exactly, yeah, and who do you want on your team,
right?
Right, and I have a lot ofdoctors who's you know?
I remember the neurologistmentioning something about the
neuro muscular clinic here intown and he didn't make a
referral.
But I had to go back to my GPand ask her for a referral and
(15:56):
she was new in the city so shedidn't know.
But anyway, asking for thatreferral to the different kinds
of, like a physiatrist orwhatever it is, or let's say,
you have Lyme disease, maybesomebody who specializes in Lyme
, if you don't already have thatright?
Michael Kentris (16:10):
Yeah, and that is the thing is that there are
these multidisciplinary clinicsout there.
Usually, you know, at the moreacademic areas which certainly
in parts of Canada, parts of theUS, you may be 50, 100 miles
away from some of these places,maybe more in some areas of the
country, and just getting therecan be very challenging in the
first place.
Linda Petiot (16:31):
Yeah, yeah, exactly the fellow I was talking
to yesterday.
He lives in a city two hoursaway but there's no neurologist
there, so he got referred tosomebody up here in Calgary,
which you know.
If you're going to gettreatment, that's a long ways to
go if you have to go regularly.
Michael Kentris (16:46):
Right and especially I assume he has
neuropathy, so driving cansometimes for people with
neuropathy if you don't have thespecial adaptations on your car
might be very challenging.
Linda Petiot (16:57):
Yeah, and even with the fatigue that comes in.
You have so much energy in aday and if you're using it up
getting to your appointments bythe time you get there it's hard
to even focus on what thedoctor is telling you.
Michael Kentris (17:07):
Yeah.
So, talking with the folksyou've talked with and your own
personal experience as well,what are the things that you
wish your GP or your firstneurologist would have keyed in
on, would have talked with youabout?
What are the things that wouldhave been, let's just say, made
that process from an initialdiagnosis to like what's the
(17:29):
plan going forward more smooth?
Linda Petiot (17:35):
I'd say there's things that maybe they could be
doing, like the neuropathymedications, for example,
knowing that.
So we're going to give you thismedication, but just so you
know, it's only going to helpyou 30 to 40% of relief and no
more than that.
So chances are you're not goingto find full relief.
The best results come fromlearning techniques Right.
(17:57):
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.
You take and it's worse at night.
So you take VIX Vapour Rub andyou put it on your feet and of
course it's got the menthol init and the camphor.
So that's got some kind ofcooling.
(18:18):
That's going on.
Nerves can only send onemessage at a time.
So I'm told so so that that canwork by itself for some people.
If it's not enough, you can puta fan that's blowing on your
feet with the VIX Vapour Rub andthat really helps.
And if that still doesn't work,you can make the fan oscillate
and that helps even more the fanoscillating.
Michael Kentris (18:37):
that's a new trick for me.
I'll have to keep that one inmind.
Linda Petiot (18:39):
Yeah so, but people, some people will do some
of the craziest things.
I remember sitting with my dadand this was long before we knew
he had CMT.
His feet were burning.
We were sitting out in thebackyard 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 goodidea.
Michael Kentris (19:02):
It's a restante .
Linda Petiot (19:04):
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 nicewater and stuff like that and I
just, yeah, you're just goingto do more damage, but they
don't understand these kinds oflittle things that are hurting
them Right, and I don't know ifit's over the counter in Canada
as well, but there's somecapsaicin creams and things like
that.
Michael Kentris (19:24):
Like other topical agents.
Some people use compoundingpharmacies for different
mixtures of different drugs andthings like that, with variable
results.
Linda Petiot (19:33):
Yeah, but yeah, it is yeah, go ahead.
Yeah, sorry.
Michael Kentris (19:37):
No, that's fine .
Linda Petiot (19:38):
That's.
One of the things that I thinkI'd like to see get tried more
often is the compounding drugs,because they help a lot of
people and they've got themedications like ketamine that
take the pain away completely.
Another one and of course it'snot legal everywhere in the US,
but medications with medicalcannabis in them.
(19:58):
They help a lot of people andit doesn't have to be an oral
medication.
It can again be a topical thathelps.
Michael Kentris (20:07):
Yeah, no very good points, and I always find.
I think back to one person Itook care of in the past in
particular, who had multipledifferent reasons for neuropathy
.
She had had hepatitis infectionas well as diabetes and had a
heck of a time getting her bloodsugar under control, and so we
were trying to get her somerelief and, like so many people
(20:29):
around me, started out withgabapentin and she kind of
developed tolerance issues withthat.
So we ended up switching topregabalin or Lyrica and she
came back six months later andwe had slowly bumped up, but it
had been a few months since Ihad seen her and she had gained
like 20, 30 pounds.
I'm just like I'm doing themost terrible thing for her to
(20:50):
help her control her diabetes,and that's it's right.
It's one of those things wedon't think about, like weight
gain, especially for folks whohave diabetic neuropathy, is one
of those really bad elements.
That that those drugs can makeworse.
Right, we're trying to controlsymptoms, but we're kind of
worsening the root cause.
Linda Petiot (21:04):
Yeah yeah, gabapentin's kind of an
interesting one.
We had a neurologist come speak.
This was a few years back Ithink he's retired now but he
said that gabapentin became thegold standard for neuropathy,
based on a 16 person study.
But they had nothing else, sothat's what we all went with.
Michael Kentris (21:23):
Yeah, and now it's.
Now it's generic, so it's niceand inexpensive.
Linda Petiot (21:26):
Yeah, which is good.
Michael Kentris (21:28):
Yes, it works somewhat for most people right.
Linda Petiot (21:32):
For some people the side effects are so bad that
they'd rather just deal withthe neuropathy.
I've heard that many times.
Michael Kentris (21:38):
Yes, me too.
Yeah, and that's that's alwaysa tricky bit.
And then I always I remember anarticle I read a year or two
ago was kind of looking at likea pathway for different
medications and I think some area little more neglected than
others in terms of like thedifferent antidepressant
families of medications like theSNRIs, like deloxatine and
(21:59):
vanilla vaccine, and then onethat I started using a few years
ago which is more of asupplement in people who don't
have reflux issues with theirstomach or things like that, is
alpha lipoic acid, which youprobably come across as well.
I think that one's a littleunderutilized in some
populations.
Linda Petiot (22:18):
That's well within our community, that neuropathy
patients, that's sort of thefirst supplement people want to
go to.
Yeah it really is.
Yeah, there's a.
We have a whole list.
Michael Kentris (22:30):
Right right.
Linda Petiot (22:31):
You know, for me with CMT, one of the worst I
used to get was like the reallystrong electrical shock randomly
throughout my body.
I remember sitting in a meetingwith 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 whatwas that all about?
Michael Kentris (22:51):
Yeah.
Linda Petiot (22:51):
And I didn't know I had CMT.
I didn't know.
I thought everybody got thesethings.
So I asked her well, don't youget those?
No, okay, and didn't think muchmore about it then.
But yeah, it's B12, vitamin B12and actually a complex is.
I ended up trying a fewdifferent before I got to that
one, but it's all but eliminatedthose for me, unless I run out
(23:14):
and then within about a weekthey start coming back.
Michael Kentris (23:16):
Wow, interesting.
Yeah, it's different people,different responses to
relatively benign things issometimes just it leaves you a
little perplexed, right?
Yeah, we always.
We think we know something andyou know someone comes along and
just like, well, maybe not somuch, but in terms of like
(23:37):
people who are like maybe theygot some numbness in their feet
and their approach in their GPto get it worked out.
What are the things that tendto be done well, tend to be done
less well, areas forimprovement for for this
official evaluation.
Linda Petiot (23:59):
Well, don't assume it just affects hands and feet,
first of all because for lotsit doesn't.
I'd say, look at a person'smedical medical history and what
drugs that they're on and seeif there's anything that are on
(24:20):
the neurotoxic list.
Because again, if you have, say, lupus and then you're given
statins, well now you've got twothings causing neuropathy.
Potentially right, statinsdon't cause neuropathy for
everybody, but I think ifsomebody already has neuropathy,
you've got already damagednerves and something that is
neurotoxic is something thatshould maybe be looked at.
(24:43):
And with statin I use statinsbecause I'm on statins as well
there's studies that show someof them aren't tied to
neuropathy at all, or some aretied 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.
(25:06):
I've also seen studies wherevitamin B3 combined with your
statins can help lessen theeffect.
So things like that, looking atthat and understanding those
kinds of things.
If it's an neurologist andthey're going to be reporting
back to the GP, mention thatbiopsychosocial model.
(25:28):
We have people who are in verydire straits because of their
neuropathy.
Within the last few years we'vehad within our sort of little
circle of people three peoplewho have committed suicide
because their pain is so bad.
It's awful to hear about and toknow what these people are
(25:52):
going through.
I would also recommend that theyTalk to people about looking
for support groups and and youknow, a support group doesn't
have to be a neuropathy supportgroup or a Diabetes support
group or anything like that.
If you can go to art therapy orYoga therapy, or we have one
(26:16):
lady who who says her swimmingclub has saved her life because
first of all, she's gettingexercise but she's also got a
community that she can relate toand talk to.
There's all.
There's so many ways to helpourselves, but Quite often we
felt feel like we're left alonewith this to deal with, because
the medic, you know that's againsetting the expectations.
(26:37):
Medications aren't gonna helpas much as you might think so.
There's other things you needto look for.
Absolutely I think I might havediverged from your question.
Michael Kentris (26:46):
That's okay.
It's a free form, free-formconversation.
So so let's say, and I'm surethis is probably not an uncommon
story, but we have someone whogoes in to the GP and it's like
oh, you know you, you haveneuropathy and then we're just
gonna refer you to neurologistand, like you said, right, the
(27:07):
wait times can sometimes bequite long.
What should they be pushing for?
Right, I know, I mean, I knowwhat I would say as the
neurologist, but but what so?
Our a lot of the GP is usuallyroutinely ordering like some of
the blood work and and testingthat we would normally look for
for evaluating, like kind of theOpening salvo for investigating
(27:29):
neuropathy, or is there isthere some things that are a
little Left a chance.
Linda Petiot (27:34):
I, I think they are.
I know there was one fellow whovolunteered with us, for
example.
He went to the doctors becausehe had neuropathy and that's how
they discovered he had diabetes.
Right.
So I would expect becausecancer Treatments and diabetes
are the two highest causes thata GP, before they sent you off
(27:57):
to a neurologist Especially ifyou had to wait a long time they
would test for things like that.
Well and and and, look at yourhistory.
So if they, if they can seethat you've had some of the
drugs or Cipro is another, it'san antibiotic but that has has
been known for causingneuropathy you can sort of look
through and see there's thingsthat the GP can do.
(28:19):
Is basically what I'm saying.
And, yeah, I think they do dosome of that, especially if it's
a.
The top of the list is diabetes.
So Right, it's an easy one tofind, I would think, and there's
a test for it.
A lot of the times there aren'ttests, right?
Michael Kentris (28:33):
Very true for conditions.
Right, you start getting downthat list now.
We're, you know, checked for,like you said, diabetes, vitamin
deficiencies, you know, madesure to screen for that history
of exposure to different drugsor cancers and so forth then, a
lot of times you're kind oftalking about like genetic
testing, which can be expensivesometimes, or Sometimes like
(28:55):
skin fiber, skin nerve fiberbiopsies or EMG is a nerve
conduction studies and which arenot particularly pleasant,
especially if you already havepain.
But yeah, it starts to get intothe weeds pretty quickly after
you kind of exhaust that top oflist.
Yeah, number of items.
Linda Petiot (29:11):
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 onFacebook in a group.
That's particularly good.
What would you want your doctorto know about neuropathy?
(29:32):
And the one fellow was talkingabout his mercury fillings.
So obviously he was older buthe couldn't get anybody to
listen to him and so he had.
He finally just gave up andhave the tooth pulled and then
somehow he says it got better.
So there's going to be strangethings, but listening to,
(29:54):
listening to the patient, ifthey suspect maybe they don't
have it quite right, but maybethey have something in the right
area.
So yeah, I've heard a couple ofstories like that.
Michael Kentris (30:05):
There are.
There are always those strangeones and you're never quite sure
.
It's funny you mentioned that Ihad a the gentleman I took care
of years in the past who whoused to make those kinds of
fillings and he had years laterdeveloped Neuropathy.
His ended up being autoimmune.
But but we were, you know, atthe first few months we're like,
is this related to it?
It's like he hasn't been doingit for like over a decade, it
(30:26):
you know.
But yeah, it's one of thosethings where there's just so
many clauses once you get intothose weeds that especially if
you don't have a definite answer, you kind of Sometimes they're
not quite sure where to directyour attentions and your efforts
.
In terms of investigations,yeah, and you know you try to be
mindful of, like, the cost ofthe person and Delays in
(30:49):
diagnosis.
And you know, in base invasivetests, you know as they they're
not super prominent inneuropathy evaluations other
than the EMG is.
But you know you try andminimize that as best you can
and they can get Convoluted.
Linda Petiot (31:04):
Yeah, and I, I understand that, and that's one
of the things that we do try totell people is you know, at some
point you just do have to giveup looking, I guess, and Treat
your symptoms as best you can.
With what knowledge you couldlearn right right, right and to
your point.
Michael Kentris (31:23):
You know, finding that that group of
specialists like the rehabspecialists and a good
physiotherapist and, you know,if the pain is quite bad, a good
Psychotherapist as well to helpyou teach those, those
techniques that all those piecestogether can, can significantly
improve quality of life For alot of people, even if you, by
objective measures, thingshaven't quote unquote gotten
(31:45):
better.
So I think that's somethingthat we often neglect in our
look for a quick fix.
But yeah, there's.
Linda Petiot (31:52):
Yeah, we always we try to tell people that there
is no cure.
And so, learning what you canto manage things yourself and
give yourself back some qualityof life, and I hate to say learn
to live with it, but learn tomanage it so that you can
function because you can livewith pain.
Michael Kentris (32:14):
Right, yeah, yeah, I know Again right before.
We're just recording or talkingabout how my back hurts more, a
little, a few more days perweek every year, and you know
you try and stay off theinevitable, but you know that
maybe 20, 30 years from now it'sprobably going to be there on a
regular basis.
Linda Petiot (32:32):
So Well, and if you're a person like me, who
always is going and wanting todo things, learning to pace
yourself, is super hard, I stillcan't do it.
I was saying that I was feelinggood yesterday and not as good
today, and I know it's because Ioverdid it yesterday.
Michael Kentris (32:50):
Right, which, yeah, it's such a common story,
right?
You know, I'm sure one of thethings that your groups talk
about, like the spoons theory,we only have for those who are
familiar we only have our energyas represented by spoons, and
if we spend all of our spoons onrunning to the grocery store,
going to the bank, maybe takingthe dogs for a walk, and now
we're out of spoons, so now howam I going to get dinner made or
what have you?
(33:11):
So budgeting energy as well astime, becomes extra important
for a lot of these kind ofchronic problems, whether that's
neuropathy or anything elsethat limits your function,
potentially.
Linda Petiot (33:21):
Yeah, yeah, you know.
One message I kind of have inthe back of my head for doctors
and neurologists is please don'tuse the word catastrophizing.
It's insulting for people, youknow, when they're tied to their
worst case scenario like that,they're doing that because
(33:42):
they're not feeling like they'rebeing heard.
The healthcare system somehowisn't validating what they're
going through, and so they'rekind of at that limit where they
end up doing that.
I've had conversationsfortunately 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
(34:03):
know what, so I just listen,honestly, that's you know.
But it comes back to listeningto the patient and what they're
saying, because what they'reexperiencing is relevant.
And the healthcare providerneeds to speak to that.
Michael Kentris (34:21):
That is one of the hard things about pain.
Right, there's no tests thatcan tell us how much of the pain
is from the nerves, how much ofit's from someone's emotional
state, and in reality it's kindof semantics, right, it's all
connected.
So you feel what you feel andwhat can we do to help with that
as best we can.
But yeah, it is one of thosethings where that's why, when
(34:44):
they talk about, like functionalneurologic syndromes and other
things, one of the things theydon't really touch on is pain,
because well, how would youdifferentiate that from pain
that isn't related?
And it's one of these thingsthey talk about in a lot of
research, in the last, I want tosay, decade or two, is the
centralization of chronic pain,which it literally changes how
(35:06):
our brains are wired and how wethink about things, and
sometimes the medications alsothat we use to treat those
symptoms can also affect that.
So we do have to be mindful ofthe fact that maybe they are
quote unquote catastrophizing,but it is because they are in
distress and it doesn't maketheir experiences any less valid
.
It might make it harder tocommunicate with somebody, but
(35:28):
ultimately you're correct.
Listening is usually a goodfirst step.
Linda Petiot (35:31):
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 mea book.
It was called the eight minutemeditation and what it was was
eight different meditations.
You did it for a week for eightminutes each time.
(35:52):
By the time I had finishedgoing through the book, I could
tell that my emotionalregulation was a lot better.
And now I'm going to say thisis four years later.
I practice.
I don't always, I'm notconsistent, but I do practice
fairly regularly and I can.
Now, if I do get a pain, saydown in my foot like a throbbing
or something, I can, I canbreathe through it and I can
(36:15):
actually make it go away.
And and there's.
So we talked about medications,right?
So 30 to 40% medication, andthere's we'll take the pain away
or mask it.
And with mind, body stuff likemindfulness, meditation, there's
studies that show we use 30%.
(36:36):
But I saw one place where theywere claiming up to 60% pain
relief.
And you think, okay, 30% formedication, 30% for meditation,
that's 60% pain relief.
And now I cut out sugar, I cutout alcohol, I cut out
artificial sweeteners, I do allthese other kinds of little
(36:56):
things, and it can add up toenough pain relief that again
you can function and you'reyou're taking control of your
life that way.
Michael Kentris (37:04):
Yeah, it is really impressive the power of
the mind if we, if we train itand give it the tools to help us
.
So I think that's an excellentpoint.
I know I, I'm in the same boatwhere you know I some days I'm
better about my, my healthyhabits both.
You know exercise as well asyou know like I'm more prayerful
(37:24):
, prayerful meditation, sowhatever form that takes for
people but and there's certainlydifferent forms of that kind of
like the body awareness andthings like that, or the breath
meditation, but yeah, they cancertainly have some good utility
for for pain in particular.
Linda Petiot (37:40):
Yeah, yeah, it just it all takes work right.
It all takes commitment andgetting into the habit of doing
stuff or the habit of not doingstuff.
I still love sugar.
Michael Kentris (37:53):
And.
Linda Petiot (37:53):
I pay for it every time, but.
Michael Kentris (37:56):
I know I, just this last summer I I finally
read Atomic Habits, because I'veI've been working on that
myself, right, how can I trick,quote, unquote, trick myself
into doing things that arebetter for me and stop doing
things that are not good for me?
Mixed results so far, but youknow, at least I'm sticking with
it.
Linda Petiot (38:14):
Yeah, I've, I've read that one too.
There's another one.
I can't remember the name.
It's right behind me thoughit's there somewhere.
But yeah, I do try to practicethose as well, but I get so
wrapped up in all the otherthings that I'm doing.
Michael Kentris (38:27):
I just it's easy right and the hustle and
bustle to let things slip.
Linda Petiot (38:33):
Yeah, yeah, yeah.
Michael Kentris (38:35):
Well, did you have any any final thoughts or
things that you would want toshare with our audience?
Linda Petiot (38:42):
Just that the things people do for their nerve
health going forward oncethey're diagnosed has the
potential to make a difference.
So in how fast it's progressing.
There's lots of suggestionshere that I've talked about, but
and it's all kind of commonsense sort of stuff some of it
maybe not as much, but they'reall important and and going to
(39:04):
find.
So we're in Canada and and wehave folks from the States, but
down in the States there's theWestern Neuropathy Association
as well and there's also thefoundation for peripheral
neuropathy.
I think we're kind of like thethree big ones.
Michael Kentris (39:17):
Okay, so make sure to link all those
organizations in the show notesas well.
Linda Petiot (39:21):
Okay, that'd be awesome.
Yeah, but of course I'm partialto the Calgary Neuropathy
Association.
Michael Kentris (39:25):
Of course, of course.
That's probably the best one,of course.
Linda Petiot (39:28):
Well, because we're smaller, I think we're a
little more personal, but that'syou know.
I'm not basing that on anything.
Michael Kentris (39:38):
Well, I appreciate you taking the time
to come on talk with me, shareyour experiences with our
audience and kind of some of theresources and strategies that
are out there for folks who haveneuropathy.
Linda Petiot (39:46):
Well, thanks, and I can't thank you enough for
having me on.
Michael Kentris (39:50):
Thank you.
Okay, so thank you.
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