Living Well with Parkinson's: What Patients and Caregivers Need to Know in 2025

Episode Transcript
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Speaker 1 (00:01):
Welcome to the Wellness Connection MD podcast.
Today we present to you thefirst in a two-part series on
Parkinson's disease.
Neurologic diseases are thenumber one cause of illness
worldwide, and Parkinson's isthe fastest-growing neurologic
disease.
So it's high time we take adeep dive into this important
subject, especially since we arein the midst of Parkinson's
Disease Awareness Month.
In part one, our special guestspresent to you a thorough

(00:24):
breakdown of strategies andresources available to patients
and caregivers faced withParkinson's.
In forthcoming part two, wewill circle back around to talk
about some evidence-basedfunctional and integrative
strategies that may be useful tocomplement traditional care.
This is a complicated subjectand we cover a lot of ground,
but at the end of the journey Ihope that you will be rewarded
with an excellent summary ofParkinson's disease, both from a

(00:47):
conventional and a functional,integrative point of view.
Enjoy the show.

Speaker 2 (00:54):
Welcome to the Wellness Connection MD podcast
with Dr McMinn and Coach Lindsay, where we bring you the latest
up-to-date, evidence-basedinformation on a wide variety of
health and wellness topics,along with practical take-home
solutions.
Dr McMinn is an integrated andfunctional MD and Lindsay
Matthews is a registered nurseand IIN-certified health coach.

(01:15):
Together, our goal is to helpyou optimize your health and
wellness in mind, body andspirit.
To see a list of all of ourpodcasts, visit mcmdcom and to
stay up to date on the latesttopics, be sure to subscribe to
our podcast on your favoritepodcast player so that you'll be
notified when future episodescome out.
The discussions contained inthis podcast are for educational

(01:37):
purposes only and are notintended to diagnose or treat
any disease.
Please do not apply any of thisinformation without approval
from your personal doctor.
And now on to the show with DrMcMinn and Coach Lindsey.

Speaker 1 (01:50):
Hello and welcome to the Wellness Connection MD
Podcast with Dr McMinn, theevidence-based podcast on all
things wellness, where we bringto you honest, commercial-free,
unbiased, up-to-date andevidence-based information,
along with practical solutionsin order to empower you to
overcome your healthcarechallenges and to optimize your
wellness of mind, body andspirit and to become a great
captain of your ship when itcomes to your health and

(02:11):
wellness.
Coach Lindsey has amuch-deserved day off today, but
I'm excited to have two specialguests on the show today to
talk about a very importantsubject and one that has some
personal significance to me, andthat is Parkinson's disease.
My beloved father hadParkinson's, so I hope that we
can help others patients andcaregivers who are going through
what my dad and my family wentthrough.
We can all learn from eachother's experiences, and y'all

(02:33):
can learn from our mistakes andwe certainly made a few of them
along the way.
But before we get into it, wehave just a couple of brief
housekeeping duties to take careof.
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However, it does cost us moneyto produce these podcasts and
heaven knows we spend a lot oftime doing our research so we
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so consider making acontribution to help us keep
this going and keep it coming toyou.

(02:54):
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First, I'm not asking you tobuy anything that you don't
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consider purchasing supplementsfrom our Fullscript dispensary
at a 10% discount.
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(03:16):
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(03:37):
We thank you so much.
And now on to the show.
Let me start by introducing ouresteemed guests First.
We are so grateful to have withus today Ms Laura Lieb.
She's an adult geriatric nursepractitioner at the Department
of Neurology, movement DisorderDivision at UAB, which is the
University of Alabama atBirmingham, go Blazers.
She works there as a researchclinical coordinator, clinical

(03:58):
nurse and as the Parkinson'scommunity coordinator for the
American Parkinson's DiseaseAssociation.
So Laura works every day in thetrenches taking care of folks
with Parkinson's disease.
She's also up to date on all ofthe latest research and she is
out in the community helping puttogether the village of
providers and caregivers takingcare of these folks with
Parkinson's.
Our other guest happens to be mybeloved sister Cindy McMinn.

(04:19):
Now, I'm not denying there's abit of nepotism going on here,
but in all honesty she reallydoes deserve to be on the show.
Cindy valiantly served ourcountry as an Army nurse and
retired as a lieutenant colonelin the year 2000.
So every time I see her shewants me to salute her.
But I got to tell you it's justnot going to happen.
I'm just saying I successfullypestered Cindy into coming to
work for us at the McMinn Clinic, a functional and integrated

(04:42):
medical clinic here inBirmingham, alabama, and while
she was there our father wasdiagnosed with Parkinson's and
this drastically changed thecourse of her career and her
life.
Being the natural caregiverthat she is, she began to focus
on Parkinson's and was hired asthe first care navigator for the
Parkinson's Association ofAlabama.
So Cindy has been there anddone that as a direct caregiver,
as a medical professional andalso as an active leader of a

(05:04):
support group.
She has so much knowledge,experience and passion so we're
excited to pick her brains onthe show today.
For more interestinginformation on our two guests,
check out wwwmcminnmdcom andlook under guest bios.
There you'll see some picturesand some interesting tidbits
about both of our guests.
So, without further ado, a warmwelcome to you both, laura and
Cindy.
Thank you both for joining ustoday on the Wellness Connection

(05:25):
MD podcast.
We're thrilled to have you onthe show today to discuss
Parkinson's disease, the fastestgrowing neurologic disease in
the world.

Speaker 3 (05:33):
Well, it's good to be here.

Speaker 1 (05:40):
Thank you for having me.
I'm out that this isParkinson's Disease Awareness
Month, so it's particularlygratifying to me that y'all were
able to come over and join metoday on the podcast to shed
some light on Parkinson's and tocelebrate the caregivers, the
medical professionals and, mostimportantly, the patients who
are associated with Parkinson'sdisease.

Speaker 3 (05:56):
Yeah, this is an important time.
I think that understanding andawareness of Parkinson's disease
is growing.
We know that there's anincrease in the incidence and
that awareness helps.
Hopefully people get inconnection with more programs
that can help them and theirfamily members live well with

(06:16):

Speaker 1 (06:19):
Before we get going.
I hope y'all can clarifysomething for me.
I've always used the termcaregiver.
However, recently I heardsomeone use the term care
partner.
I certainly want to try to usethe right term.
So are both terms acceptable,or has the term care partner
become the preferable term touse in this situation?

Speaker 3 (06:35):
I think that the term care partner is being utilized
more frequently and that it's arelationship between two people
coming together, joining forcesto help live better, and doing
this in a team manner.
Caregiver may not quite embodythat concept, although I think

(07:00):
that both terms are used andthis may just be an individual
preference.
Care partner seems to beutilized a little bit more
frequently in recent years,probably for those reasons.

Speaker 1 (07:14):
Well, I will try to make that transition, but if I
goop up and say caregiver, thenplease forgive me.
But, as I said earlier, my dadhad Parkinson's and even though
I was a doctor at that time andCindy was a nurse practitioner,
I have to admit we didn't alwayscompletely get it.
For instance, we didn'tunderstand that many of my dad's
other symptoms besides theclassic Parkinson's symptoms,
like tremor and slow gait, likeconstipation, for instance, or

(07:38):
loss of smell and decliningmental status, were related to
his Parkinson's disease and wehad no clue about caregiving
resources.
So, looking back on it, we madea few mistakes and we could do
a better job if we had a do-over.
But I can attest that my dadwas always surrounded by love,
especially from my mom and fromCindy, and that meant the world
to him.
So also, we learned a lot alongthe way and we're grateful to

(08:00):
have this opportunity to sharewith others so that we can pay
it forward to other patients andcare partners who might be
going through a similarsituation.

Speaker 4 (08:08):
Yeah, it was a difficult time when Paul got
diagnosed with Parkinson's and Ilook back on that and am truly
astounded, even today, at howlittle we knew and how we were
simply reacting rather thanbeing proactive, because we
didn't know who to call, what todo, how to respond, what his
symptoms would be.
So we were completely takenaback by it all and that's what

(08:31):
prompted me to go into workingwith Parkinson's.

Speaker 1 (08:34):
Quite frankly, I think most families are in the
same situation, and that's kindof why we're doing the podcast
today.
So let's start with the basicsand not assume that everybody
knows that much aboutParkinson's, anyway.
So let's start with the basicsand not assume that everybody
knows that much aboutParkinson's, and so if y'all
could just please describeParkinson's for me today and
exactly what is Parkinson's?

Speaker 3 (08:56):
Parkinson's disease is considered a
neurodegenerative disorder.
It's characterized primarily bya loss of dopamine cells in an
area of the midbrain called thesubstantia nigra, and one of the
most important functions of thesubstantia nigra is to do with
motor control movements, but italso is involved in eye

(09:17):
movements, emotions, cognitionand even learning.
Usually the symptoms initiallystart on one side.
Oftentimes it can be a motorsymptom.
That's first noted.
The primary motor symptom ormovement symptom that is needed
to even consider Parkinson'sdisease is slowness, and that

(09:41):
term is often known asBradykinesia when you're talking
to a healthcare provider.
But slowness and then othermovement or motor symptoms
include tremor, rigidity andpostural changes and changes in
gait and balance.
That's one component, andanother element that's very
important which you touched on alittle bit earlier is this

(10:03):
non-movement or non-motorsymptoms that really were not as
well described in some of theearlier literature and probably
have become more and moreemphasized as we understand more
about Parkinson's disease,really in the last about 25, 30
years.
But that's kind of a basicunderstanding of Parkinson's

(10:26):
disease.
It is a complex disorder inwhich we're learning more and
more about.
For example, we don't quiteknow what causes Parkinson's
disease, and there's multipleother things we're still
striving to gain knowledge inregarding Parkinson's.

Speaker 1 (10:42):
So is our understanding of Parkinson's
still evolving?

Speaker 3 (10:46):
Yes, I would say that probably almost on a daily
basis.
You can find something to learnnew about Parkinson's, whether
it's a research article or theperson living with Parkinson's
learning about themselves or thecare partner.
But this concept of Parkinson'sdisease being just one solitary

(11:14):
condition doesn't quite ringtrue when we see such uniqueness
between each individual.
Also, there are I shouldprobably take a step back and
say there's a term calledParkinsonism, and that's what we
call kind of like an umbrellaterm, and Parkinson's disease is
the most common Parkinsonism.
Other conditions might includemultiple system atrophy and

(11:39):
other conditions that have somesimilarities but are very unique
diseases.
We also see what we callsubtypes or different variants
of Parkinson's disease, and sothere are debates and research
going on about.
Are there actually a few otherdisorders?

(12:00):
We're still calling themParkinson's disease, so this is
an ongoing area for us to learnabout.

Speaker 1 (12:09):
So can we kind of think of it like we do autism,
where it's more of a spectrumdisorder and there are different
syndromes and that the subtypes.

Speaker 3 (12:24):
We do have some terminology for the subtypes of
Parkinson's, for example, tremor, predominant Parkinson's
disease.
Obviously, it's kind ofclarifying what it is and that
you have mainly a tremor, andthen we have people with
Parkinson's disease that havemainly akinetic or a lot of
slowness and stiffness, and so Icould you know, see, people use

(12:47):
that analogy of a spectrum, butprobably a component of this
that we'll be discussing Cindyand I have brought this up a lot
is just the uniqueness thateach person has with Parkinson's
, and there's a statement thatprobably rings true for many
people out there is once youmeet someone with Parkinson's,

(13:08):
you've met one person withParkinson's.
So understanding that there isa spectrum of symptoms and that
each person is unique isimportant also in the treatment
of these medical conditions.

Speaker 1 (13:24):
So I think it's fair to say, then, that the
Parkinson's is not just adisease of the brain.
It's more systemic, involvingmultiple organs.
For instance, I recently heardthat Parkinson's patients had a
fourfold increase in melanoma ofthe skin.
Well, go figure, isn't thatinteresting.

Speaker 3 (13:40):
Yes, there is an increased risk of melanoma in
Parkinson's and it is aneurologic disorder that has an
effect on the whole body.
So we'll probably talk aboutthis a little bit in the future.
What is Parkinson's disease?
It's evolving, partiallybecause of our understanding

(14:02):
that it is just more than motorsymptoms.
It's much more than just tremor.
So Parkinson's can affect skin,can affect your eyes, your
ability to smell, your digestion, your mood, your cognition.
So it is not a simple medicalcondition that is simply just

(14:24):
affecting one area of the brain.

Speaker 1 (14:27):
And what would you say is the incidence of
Parkinson's disease?
Is it somewhat rare or is itmore common than we might think?
And is the incidence increasing?
And if so, why?

Speaker 3 (14:36):
Mm-hmm.
There's a great article thatkind of will answer this.
It's by Dr Dorsey.
Will answer this.
It's by Dr Dorsey and it wasprinted a few years ago, but the
title is the Emerging Evidenceof the Parkinson's Pandemic.
So it is increasing theincidence of Parkinson's disease

(14:57):
.
About 90,000 individuals withParkinson's disease are
diagnosed in the United Statesof America each year and they
anticipate the projectedprevalence of Parkinson's to be
about 1.2 million people in theUnited States of America by the

(15:21):
year 2030.
This is an increase compared toprior epidemiological studies
and we think there's acombination of reasons for this.
For example, the aging of ourpopulation we're living longer
but also exposure we might haveincreased exposure to potential

(15:42):
risk factors.
We might have increasedexposure to potential risk
factors.
So this is kind of a should bea little bit of a wake-up call
to help us understand more aboutthe potential risk factors and
ways that we can potentiallyaddress those.
But this isn't I would notconsider Parkinson's disease a

(16:03):
rare condition.

Speaker 1 (16:05):
So is there a particular profile of a person
who's more likely to getParkinson's, for instance, is it
more likely to be a man or awoman, any racial differences,
and what would be the typicalage of onset?

Speaker 3 (16:15):
They consider the number onerisk factor to be aging.
It is more common in mencompared to women.
It is a little more common inCaucasians compared to the Asian
population, but there's alsopotentially more research that

(16:37):
needs to be done across theworld for us to understand some
of those outcomes.
The other risk factors includea family history of Parkinson's
disease, exposures, long-termexposures to herbicides or
pesticides, so you startthinking about potential
occupations that might beassociated with that.

(17:01):
In general, Parkinson's diseaseis usually diagnosed in the
sixth decade of life, so in your60s.
However, I think most peoplelistening to this will probably
be very familiar with agentleman that goes by the name
of Michael J Fox, and he wasdiagnosed at age 29, or his

(17:23):
initial symptoms started when hewas 29.
So it doesn't just affect olderindividuals and it can also
affect people that are olderthan their 60s, but that's the
most common, and I do think thatthere's even growing research

(17:44):
trying to help us understand isParkinson's affecting women or
different for women than men?
And this is something that Ithink in part is because we
haven't really focused as muchon research in women globally,
and so we're trying to do abetter job of looking at the

(18:05):
effects of Parkinson's diseaseon women compared to men as well
.

Speaker 1 (18:09):
You mentioned.
Perhaps certain occupationsmight be more at risk.
Just off the top of your head,what occupations might?

Speaker 3 (18:15):
those be exposed to high-risk herbicides or
pesticides.
Sometimes that could be in thefarming community, for example
working with certain heavymetals or toxins, like a welder,
for instance.
For instance, a welder If youhave a career where you work a

(18:40):
lot with solvents, sometimesthose are found in even dry
cleaning.
So now that doesn't mean thateveryone with that particular
occupation is going to haveParkinson's disease.
These are risk factors.
So one of the questions is whywould somebody get it and not

(19:04):
another individual not getParkinson's disease that's
exposed to these risk factors?
And that kind of leads to thequestion of well, what causes it
?

Speaker 1 (19:14):
Well, and it also leads to the concept of genetic
susceptibility.
Right, I mean two peoplesitting side by side with the
same exposures.
One gets it, one doesn't.
We see that throughout themedical world and that has to do
with the genetic susceptibility.

Speaker 3 (19:26):
Exactly Genetic susceptibility, that's right.

Speaker 1 (19:30):
So then, yeah, you know, I think toxins are a huge
issue and often swept under therug in medicine.
We did a whole podcast ontoxins which I encourage people
to go back and listen to.
But yeah, it's a big, big, bigdeal.
And so, other than say geneticsand toxins, are there any other
factors that you can think of,like diet, lifestyle or

(19:51):
something else that might becontributing to Parkinson's?

Speaker 3 (19:54):
Yes, Repeated head injuries.
Head traumas are associatedwith higher risk.
There's also certain areas ofthe country that seem to have a
higher risk, which may in partbe due to exposures to those
pesticides and herbicides.
But, like industrial areas, theRust Belt so those are where

(20:19):
you live might be a risk factor.
If you look at some of theresearch for men and women that
have served in the military,they do show that there is a
potential increased risk ofParkinson's disease for people
that have had traumatic braininjury and even post-traumatic

(20:40):
stress disorder or othertrauma-related disorders.
And there's probably a fewothers that I'm not thinking of
right now, but those are theones that come off the top of my
head.

Speaker 4 (20:52):
I remember something about drinking well water.
You are more likely to getParkinson's.

Speaker 1 (20:58):
Yes, also in the military, besides the head
trauma issue you have the issuesof toxin exposure vis-a-vis
Agent Orange or the burn pitswhich were quite common over in
the Middle East, in Iraq, andthat kind of thing right.
Yes, yes.
Okay, yeah, cindy, you and Iwent to a really interesting
lecture back a few years ago byan esteemed UAB neurologist

(21:19):
which was entitled Parkinson'sDisease Starts in the Gut.
Now, can either of you all tellus any more about that sort of
gut-brain connection when itcomes to Parkinson's disease?

Speaker 3 (21:30):
So we are whole beings.
We're not disconnected ordisjointed, but a lot of times
we kind of view our mind, as youknow, in and of itself, but
this gut-brain connection, ourvagus nerve, connects our brain
to our gut, and there are otherconnections as well.

(21:51):
So there's a few reasons forthis gut-brain connection.
So one is they did look at thegut microbiome and this is the
composition of the bacteriapopulation and other components
that make up your microbiomeinflammation in their gut.
They also had more imbalance intheir gut related to the

(22:14):
bacteria population.
There's also a connection inthat the misfolded protein which

(22:38):
is the pathological hallmark ofParkinson's disease, called
alpha-synuclein, is found in thegut.
So the questions that scientistsare trying to understand
include is there a change in thegut that potentially triggers

(23:01):
an immune response or triggerssomething leading to
inflammation and eventuallyaffecting the brain?
Or is there a vice versa?
Is there something going theother way?
Is there inflammation botheringthe gut?
So those questions are stillbeing investigated.
There's also research lookinginto leaky gut, which we also

(23:49):
call intestinal permeability.
That might be an inflammatoryprocess indicating that it's
affecting their risk ofParkinson's disease.
There's also research wherethey looked at the esophagus,
the stomach and portions of thesmall intestines and they found
mucosal damage in individualswith Parkinson's disease.
So probably the connection isstill not quite clear, but it is

(24:09):
evident there is a connection.
There's strong evidence, notmuch argument about it, yeah
yeah, interesting.

Speaker 1 (24:17):
Just a bit more about that intestinal permeability.
It's really interesting andthere's so many reasons why
people can have that, includingan altered gut microbiome that
you mentioned.
But when you do get thatpermeability, then things it's
almost like a sieve or a filterand if you have larger holes in
the filter it's more permeablethan it should be.
Then things like proteinfragments and the

(24:37):
lipopolysaccharide from grandnegative bacteria they leak
through the gut and it's notsupposed to be there.
And something along the orderof maybe 70% of your immune
system is right there in thelining of the gut.
So all those immune cells justgo crazy and they say, okay,
we're being invaded, theseforeign bodies are coming
through, they shouldn't be there.
And then they attack theseforeign bodies with antibodies.
But also then they startcreating these inflammatory

(24:59):
cytokines right, which go allover your body and cause
inflammation, includingneuroinflammation, and at the
end of the day, parkinson's is adisease of neuroinflammation,
am I correct?

Speaker 3 (25:12):
Yes, yes, we, yes, the research on
neuroinflammation includeswhat's causing it, and then that
might be a pathway for us totarget to help reduce or slow
So we don't yet have a cure,but all of these components of

(25:36):
triggering immune response andinflammation at different levels
, by the way, not just at asingular level within our body
are being targeted for research.
And, yes, long ago they didn'tthink that that wasn't a
component of Parkinson's.
But now, yes, especiallyprobably in the last 15 years.

Speaker 1 (25:57):
Okay, sometimes it takes 15 years for things to go
from the research stage to theclinical stage, right.
But now you're working at acutting-edge institution, at UAB
, and is there anything thaty'all are doing at UAB as far as
improving gut health, eitherfor treatment or prevention of
Parkinson's disease?

Speaker 3 (26:15):
We do not have a specific protocol for addressing
gut health and, to be fair, Idon't think it has been quite
developed, except for theapproach to your nutrition,
focusing on aMediterranean-style

(26:36):
brain-healthy diet that couldinfluence your gut health.
We have some evidence that theprobiotics, symbiotics and other
form of gut-healthy treatmentscan help, perhaps even like
constipation or other gutsymptoms, but we don't yet,

(26:58):
which this is a good point.
We don't yet have a protocolwhere we say we want you to
develop this dietary guidelineand practice these steps and
we're going to reassess in threemonths and evaluate your
symptoms again.
But I do think that's a goodchallenge.

Speaker 1 (27:38):
We should be challenged to think outside of
the pillbox and to consider waysto help people live well with
Parkinson.
Very bright and up on thelatest research and we really
appreciated that.
But at the end of the day,other than stating that
Parkinson's disease starts inthe gut, she gave no solutions
as far as what to do, and itseems like that should be an
active area of research, becausewe know, for instance, the
microbiome is related toParkinson's.

(28:00):
Well, we can improve themicrobiome.
Leaky gut is related toParkinson's.
We can improve leaky nutrition.

Speaker 3 (28:04):
We talk a lot about exercise and a lot about

(28:30):
nutrition but develop a strong,robust protocol outside of
talking about what we kind ofunderstand.
Regarding the Mediterraneandiet and some of the other
recommendations, I think maybewe should do a better job or at
least within the context of yourindividual practice, you should

(28:53):
start telling people about theresources and the research that
could give them a better qualityof life, and certainly there is
low risk for theserecommendations.

Speaker 1 (29:06):
Correct, correct.
And so let's say, for instance,if you had a guy, joe Schmo,
and his mama had Parkinson's,daddy had Parkinson's, he works
in a chemical factory, you knowhe's at high risk.
It seems like that kind of guywould be well advised to work on
his gut health.
Yeah, you see what I'm saying.

Speaker 3 (29:23):
Yeah, I agree.
Work on his gut health?
Yeah, I agree.
I do find that there's a littlebit of a challenge in talking
to someone about a behavioralchange and if I had a pill to
change people's behavior, Iwould use it, because I would
use it on myself.
But I will sometimes start with.
But I will sometimes start with.

(30:07):
I want you to make a goal ofincreasing your green leafy
vegetables and your hydrationand I try to make it so it's
presentable and feasible.
That reassurance andunderstanding that you actually
could change your overall healthif you take these actionable
steps and encourage them in thatprocess and support them in
that process.
I do think that that's animportant step in providing care
for people with Parkinson's.

Speaker 1 (30:21):
Yeah, it's really hard to get people to change the
fundamental way they live theirlives, but it's doable and I
think we should all not give upon folks.
Give them a chance and try toeducate them and move in the
right direction.

Speaker 3 (30:33):
Absolutely.

Speaker 1 (30:34):
Cindy, I sent you something today, a little email.
I don't know if you got it ornot.
It was about basicallylifestyle medicine, certain
things you can do, and it'sreally profound.
I mean, just doing these simplethings reduces your risk of
heart attacks, strokes, dementiaprofoundly.
And we did another wholepodcast on Lifestyle Medicine
and I call it.
The subtitle was the MostPowerful Medicine on Earth

(30:57):
because it just improves so manythings.

Speaker 3 (30:59):
Yeah, I think we use this term.
I think Cindy has used it aswell.
I think we use this term, Ithink Cindy has used it as well
and you know, as a society wehave a different way of viewing
health and well-being andmedicine.
But thinking outside thepillbox about your everyday life
and take it upon yourself toalso get a little bit of

(31:21):
education and understanding, geta little bit of education and
understanding.
But as a provider or someoneout in the community providing
education, I think we could do abetter job in this area.
I do.

Speaker 1 (31:34):
Yeah, well, we mentioned the Mediterranean diet
, which is wonderful.
I think it's been voted thebest diet for most folks for
about eight years running.
There's a subset of that calledthe MIND diet M-I-N-D diet
which is very similar toMediterranean diet but
specifically oriented towardsthings like Parkinson's,
alzheimer's, that kind of stuff,and I think there's been some
really good evidence of itsefficacy.

Speaker 3 (31:52):
Yes, yes, I do, and I have educational handouts about
the MIND diet as well.
So with Parkinson's we do talkabout modifying your diet and

(32:29):
we'll use taste and perceptionof what you're eating.
We often have to individualize,you know, if someone says I
can't tolerate that because itgives me a lot of gas and
bloating, we have toindividualize and we do try to
utilize registered dietitianswhen possible.
Most health care providers havelimited education on nutrition.

Speaker 1 (32:50):
Correct, correct and at the end of the day, just like
Parkinson's is unique toindividual, I think the diet is
too, and you have to find theLaura diet, the Cindy diet, the
Jim diet and that can bedifferent and sometimes it
requires some hand-holding ifyou've been eating a certain way
all your life and you want tomake this radical change to a
mind diet.
We have a functionalnutritionist we work with a lot

(33:13):
named Rachel Olson.
I've got her bio.
We did a podcast with her andI've got her bio including
contact information on thewebsite wwwmcminnbcom, and so
you can check with her and she'ssuper smart and can help people
get on the right track.
Also, there's a nice book aboutthe mind diet.
I forget the exact name of itbut I do have it on the website

(33:35):
under resources.
You'll see the name of thatbook there.
I think it's by Julie Andrews,if I recall.
But the nice thing about it ittalks about the diet but also
has kind of a cookbook aspect toin all one book.
So it's really a wonderfulresource for people.
I've actually gone and lookedat all the mind diet books I
could find and that one was thebest one and again, I have that
listed on resources on thehomepage there, so all right.

(33:57):
Well then, moving on to anotherlifestyle factor, and that is
sleep.
Tell me more about therelationship between sleep and
Parkinson's, especially withthings like REM sleep disorder.

Speaker 3 (34:07):
Okay, Parkinson's disease, like we briefly
mentioned, has multiplenon-motor symptoms and REM sleep
behavior disorder, which REMstands for rapid eye movement.
Which REM stands for rapid eyemovement is when the individual
is enacting their dreams.

(34:29):
During this phase of REM sleepyou are actually supposed to be,
you have a protective mechanismthat prevents you from moving
and enacting your dreams, butfor some reason, in about 75% of
individuals, maybe even alittle bit higher, that

(34:50):
protective mechanism, whereyou're supposed to be unable to
move and your dreams, is notfunctioning.
Rem sleep behavior disorder isoften seen 5, 10, 15, or more
years prior to the onset of themotor symptoms.

(35:12):
We consider it a very commonprodromal symptom for that
reason.
So not everyone, though thathas dream enactment, or talking
or yelling or acting out theirdreams, will have Parkinson's.
So we can't make that jump.
But if someone does suspect thatthey have these symptoms or

(35:36):
their loved one says, hey,you're hitting me in the sleep
or I hear you talking in yoursleep, sometimes that's a good
prompt to go ahead and see asleep disorder specialist.
There are some medicines outthere that can interfere with
sleep as well.
So you just want to getassessed, because REM sleep

(35:57):
behavior disorder doesn't giveyou good sleep quality.
Even though you are technicallysleeping, you're not getting
restful and restorative sleepand it could potentially be a
prodromal symptom forParkinson's.
So it might be a good idea togo ahead and talk to someone.
Right now we don't have a greatway to stop Parkinson's disease

(36:20):
, but if we in the future havethat ability to slow or stop it,
this might be a symptom that wescreen for and try to find much
earlier on and understand if wecan help people in the future

Speaker 1 (36:38):
Boy, that opens up so many questions in my mind, and
you did bring up a really goodpoint about there's a difference
between sleep and restorativesleep.
Some people might think they'resleeping.
In fact, that's one of theproblems with taking things like
benzodiazepines for sleep, likeyour Valium-type drugs.
You might sleep, but you don'tget the REM sleep, so it
interrupts your sleep cycle.
So anyway, there's that issue.

(36:59):
So if somebody were to go to asleep specialist, do they have
any tools in their toolbox toreally help folks with this or
not?

Speaker 3 (37:06):
REM sleep behavior disorder.
Well, there are a few things totreat.
For example, there are someassociations between untreated
sleep apnea, especiallyobstructive sleep apnea, that
might be accompanying REM sleepbehavior, but not universally.

(37:28):
But some people will utilizemelatonin.
There is some evidence that itmight help reduce the severity
of it.
Some people will use othermedications, like a
benzodiazepine, like aclonazepam.
There are risk factors.
You don't want to take thoselightly.

(37:50):
The other treatments alsoinclude things like really
addressing your overall sleepquality, not just one aspect of
your sleep, and then safety.
With REM sleep behaviordisorder, you can
unintentionally fall out of bed.
You could unintentionally hitthe partner in your bed.

(38:10):
So you want to think about isthere a way I can stay safe if I
unintentionally am acting outand it throws me out of bed and
I would?
This again is an individualizedapproach.
There are some people that havevery minimal symptoms and other
people that have quite severesymptoms that really need to

(38:31):
have a sleep disorder specialistaddress them.

Speaker 1 (38:36):
So we talked about the role of neural inflammation
in Parkinson's.
Are there any anti-inflammatorystrategies that might help to
prevent or treat Parkinson's?

Speaker 3 (38:45):
To my knowledge, we don't have a specific treatment
strategy for this.
But back to your pointregarding health, we know that
there are dietary decisions thatincrease inflammation, that

(39:08):
increase inflammation.
So, looking at your diet, goahead and learn more about the
MIND diet or maybe talk to aspecialist like Rachel who could
help identify areas in yourdiet that need improvement.
Exercise is an importanttreatment for Parkinson's.
It's essential treatment forParkinson's.

(39:29):
It's essential and there isoften benefit in reducing
inflammation associated withexercise.
Sleep quality, sleep hygienealso an important element.
But as far as direct medicationtreatments, I don't have
anything that we typically, tomy knowledge, we have a specific
recommendation on, although Iknow there's more research

(39:52):
looking at supplements, certainfermented foods, and there's
probably a lot more out therethat I still think we are
learning about.
What do you know?

Speaker 1 (40:03):
I'm sorry, I'm pushing your envelope here a
little bit.

Speaker 3 (40:05):
This is good.

Speaker 1 (40:07):
But yeah, I think that inflammation is huge and we
did a whole podcast oninflammation.
I would encourage people to goback and listen to.
I think we have a lot of goodideas for how to reduce systemic
inflammation, which then couldreduce neuroinflammation.
But you're on all the righttracks.
In terms of the diet, yeah,there's lots of supplements.
Curcumin, especially, isprobably pretty good.
There's some evidencespecifically with curcumin and

(40:28):
Parkinson's.
By the way, Okay great and somestudies on that.
So, anyway, take a look back atmy podcast on inflammation.
I think you'll get a lot ofgood ideas, and speaking of
which, yeah, we did a wholepodcast on CBTI, which is
Cognitive Behavioral Therapy forInsomnia.
We had a wonderful guest on theshow that time and I think that
might help some people.

(40:49):
That's a powerful tool in thetoolbox there.
And also I have a nice handouton the website on sleep hygiene
A lot of good things you can dothere.
You know, some people are theirown worst enemies.
They're watching a horror movieright before going to bed,
right, and we should be doingrelaxing things.
So I think that we have a lotof good resources for you there

(41:10):
on the website.
So, anyway, okay, any othercomments on that?

Speaker 3 (41:15):
I agree, sleep hygiene is probably one of the
behavioral changes that can havesuch a global impact on
emotional well-being, cognition,energy level, same with diet.
If you are able to put a littletime, effort and consistency,
the outcomes, the benefits youcould reap, could be very

(41:39):
substantial, life-changing,literally.

Speaker 1 (41:42):
If someone has a high risk of getting Parkinson's,
for instance, once again mom anddad had it, are there any
things that that person can doto improve his or her odds of
not getting it?

Speaker 3 (41:52):
There is some evidence again that our diet
specifically they looked at theMediterranean diet again is
associated with a lower riskrisk of prodromal Parkinson's
disease in older people.
Exercise is a potential benefitfor reducing the risk keeping

(42:13):
your head safe, your brain, yourcognition, you know, say you
grew up in an environment whereyou had a potential risk factor
like pesticides or herbicides.
If you're able to removeyourself and reduce those
exposures, it is worth doing.
Even if you think, well, I'vealready been exposed, there's

(42:35):
still benefit in at leastgetting yourself separated from
it when and where you can.
Those are some of the ways inwhich I would say you could
potentially reduce your risk.
But if you have a true geneticform of Parkinson's disease or

(42:58):
you're concerned about it, thiswouldn't reduce your risk.
But there is a research studycalled PD Generation, done
through the Parkinson'sFoundation that will do genetic
testing, connect you with agenetic counselor for free.

Speaker 1 (43:16):
You know.
Ok, let me just talk a littlebit about the whole genetics
thing.
I mean, certainly, if you havethe genes to increase your odds
of getting Parkinson's, thenthat's not good, but it's not
necessarily predeterminationVis-a-vis.
You can have two people sittingside by side with the same
genes and one gets it and onedoesn't.
Epigenetics let's say you cantake two identical twin sisters

(43:38):
with the same genes for breastcancer, but one gets it, one
doesn't.
And because this has to do withgenetic expression, right, and
we have a lot of things that canchange genetic expression, it
all goes back to the lifestylethings we've talked about the
diet, the exercise, the sleepand all that, and toxins,
because all those things canchange genetic expression.

Speaker 3 (43:55):
Yeah, our environment has a huge impact and you can
see it in very simple everydaythings.
But if you can even reducestress levels, there's in
different ways, whether it'sbeing around people you enjoy
going for a walk, getting in thesunshine or it's important to

(44:18):
consider it and, I think, a lotof things in your to your point.
You know you may have a risk,but you want to be able to take
control and or at least have asense of I have the ability to
focus on this area, even if youcan't you know we can't

(44:38):
determine the next day, but wecan at least try to make today
the best we can.

Speaker 1 (44:43):
You and my wife, dr Cheryl, are both bird watchers
and I read this reallyinteresting study that just
listening to birds chirpingreduces your cortisol levels and
lowers your anxiety.
Isn't that interesting, Ibelieve it.

Speaker 3 (44:54):
Well, I also find it's just.
We have other therapeuticoptions out there.
You know we talk about diet andexercise, but there's music
therapy, and it is real.
There's art therapy BrooklynWhite, who also works with me at
UAB, she goes around and doesart therapy classes for

(45:16):
individuals and care partnersacross the state of Alabama and

(45:40):
you want to think about those astherapeutically beneficial or
giving you benefit, whether it'simproving your rigidity or
reducing your cortisol levels orgiving you the opportunity to
get out and stretch your legs orjust being creative and
creating new neuron connections.
So I think that there'sprobably a lot more out there
that we could have access tohelp us if we would just kind of
open our doors, so to speak.

Speaker 1 (45:52):
Please describe for us some of the early signs and
symptoms of Parkinson's, bothmotor and non-motor.

Speaker 4 (45:57):
There are a number of non-motor symptoms and a number
of motor symptoms that areearly warning signs, and just
because they're on this listdoesn't mean that you have
Parkinson's.
But I was looking at this thisis a list of 10 early warning
signs and I was looking at itand realized that our dad had
seven of them.

Speaker 1 (46:15):
Yeah, well.

Speaker 4 (46:16):
And we didn't know enough to put two and two
together.
We didn't connect the dots.
Right, we did not connect thedots, so tremor is probably the
first thing that appears, anddots, so tremor is probably the
first thing that appears.

Speaker 1 (46:27):
And, as Laura said, it usually appears on one side,
and let me interrupt by sayingthat there are so many reasons
why people get tremors.
So anybody listening to this ifyou've got a tremor, do not
extrapolate and think younecessarily have Parkinson's
disease.

Speaker 4 (46:38):
And the next one is small handwriting.
And I remember when I wasworking with the Parkinson's
Association of Alabama I talkedto someone who that was her
first indication that somethingwas wrong.
She was doing her Christmascards and her handwriting was
very, very small and she knewsomething had changed.
So loss of sense of smell.
And again our dad hadsignificant loss of sense of

(46:58):
smell and we attributed it to hehad just built his house and he
put a covering on his slatefloor and he thought that the
fumes from that sealant wascause for his loss of sense of
smell, sleep disturbances suchas REM behavior disorder, and he
was up all night.
And he was up all night andacting out your dreams.
Difficulty moving and walkingand many, many falls are part of

(47:22):
this Constipation which we allknow.
He had Softened voice and Ithink with Parkinson's a lot of
things become smaller andsoftened.
So facial masking and thatdefinitely was with our dad and
I think a lot of people look atsomeone with Parkinson's and

(47:44):
they think they're angry, butthey lose the ability to make
facial expressions, dizzinessand fainting.
Some of that may be due to theorthostatic hypotension and then
stooping and hunching over andso postural instability and so,
again, if you have any of thesethings does not necessarily mean
you have Parkinson's, but it's.
Those are the clues.

(48:06):
Those are the clues, right.

Speaker 1 (48:07):
And again, we often miss many of the clues.
We can certainly look at theway people walk and we can see
their tremors, but there's somany other things that can be
early signs.

Speaker 3 (48:17):
To your point that not every individual that has
these symptoms will haveParkinson's.
I have an interesting personaltestimony.
My dad had reduced sense ofsmell, he enacted his dreams and
he suffered from constipationfor probably 30 years.
He never developed Parkinson'sdisease.

Speaker 1 (48:40):
Or was it just a different expression of
Parkinson's disease, like youwere talking about earlier?
Or was it a different?

Speaker 3 (48:44):
expression Exactly.
Now, he did have dementia.
There we go.
Was it Lewy body or otherwise?
It was otherwise.
They called it, well, mainly avascular dementia.
But what I you know, I'm sittingback and looking at my dad, I'm
assessing and evaluating.
I'm looking for his arm swing,I'm looking for other changes.

(49:07):
He also had a history.
He played football and he wasraised on a farm and so I was
watching him and, to your point,maybe he did have something
that was unique to him, becausehe was also very vigilant about

(49:30):
his diet.
He exercised almost every dayof his life.
On the day he died he was atthe gym that morning.
So was some of his lifestyledecisions reducing or preventing
some type of progression?
We don't know.
But I often found that quiteinteresting, and he actually

(49:53):
kind of knew it too, because hehad gone to some of the programs
where I presented and hesometimes would ask me do you
think I have Parkinson's?
And I said no, I do not thinkyou have Parkinson's.
But he kind of had thatawareness that well, you're
saying these are some of thepotential symptoms, and so I

(50:15):
just think it's fascinating.
You cannot jump and make thoseassumptions.

Speaker 4 (50:20):
And another thing about the early warning signs is
sometimes they can be present 5, 10, 15, 20 years prior to the
onset of the motor symptoms.
So it's connecting the dotsthat we did not.

Speaker 1 (50:40):
You know, with some diseases, for instance breast
cancer, early diagnosis can bevery helpful.
What about Parkinson's?
Does early diagnosis changeoutcomes in any way?
Very helpful.
What about Parkinson's?

Speaker 3 (50:45):
Does early diagnosis change outcomes in any way.
So that could be an individualanswer, but globally, yes, how
so?
So first, knowing the cause ofa symptom helps us understand
how to create a treatment planfor that individual.
So if you have a misdiagnosis,you could have an inappropriate
shoulder surgery because youhave stiffness and it was

(51:08):
misdiagnosed, or you could havesomething else be provided, that
is say, a medication that isnot going to be in your best
interest.
So first of all, avoidingsomething that should not be
done is important.
So first of all, avoidingsomething that should not be
done is important.
Second of all, parkinson'sdisease, even in the early

(51:29):
stages.
Keep in mind most individuals,their first symptoms, those
initial motor symptoms likeslowness, tremor, stiffness.
By the time you are showingthose first initial motor
symptoms, there's already adeficit of dopamine cells in

(51:50):
anywhere between 50 to 60percent of loss in that area of
your midbrain.
So you've already had thisdisorder for many years and
perhaps it's in subtle ways,like writing your Christmas
cards or are you havingdifficulty doing other
activities and you're justpushing through the day.

(52:12):
Whereas if you do have anassessment, an evaluation, a
diagnosis and a treatment planthat could help reduce slowness,
stiffness, rigidity or maybeget you in touch with someone
like Rachel or a physicaltherapist or someone else to
give you ways to improve yourmobility, your voice quality.

(52:36):
All of those things affectquality of life and there is
research showing that some ofthe treatments, including
carbidopa, levodopa, exercise,improving sleep quality have
improved outcomes for quality oflife, reducing fall risk,
multiple areas.
So it is important and thatdoesn't mean not everybody, when

(53:00):
they are diagnosed, want tohave a specific medication,
treatment, but understanding,appropriate resources, ways to
live well, all those importantaspects of nutrition and
exercise should be emphasized,even if you decide.

(53:23):
You know I'm not ready for aspecific pharmacological
treatment at this time.
So if a patient or a familymember is concerned that someone
might have Parkinson's, readyfor a specific?

Speaker 1 (53:28):
pharmacological treatment at this time.
So if a patient or a familymember is concerned that someone
might have Parkinson's, wheredo they start as far as getting
it evaluated?

Speaker 3 (53:48):
My general recommendation and this is
because we have such each of ushave unique access to the
healthcare system, but mostpeople have a primary care
provider and my recommendationtypically is to contact your
primary care doctor.
To Cindy's point, you knowtremor.
You can have other reasons tohave tremor.
There are medicines that cancause tremor, by the way.
There are medicines that cancause tremor, by the way.

(54:08):
So you want to be evaluated andassessed by your primary care
doctor and discuss your concernand, if appropriate, you can
request a referral.
Has a neurologist that'strained, with additional years

(54:31):
of clinical practice andsometimes research in movement
disorders.
Those are called movementdisorder specialists.
They spend more time treatingindividuals with Parkinson's
disease.
I would probably recommendseeing a movement disorder
specialist if that individualcan get to that specialist, but

(54:55):
if not, a neurologist in theirarea.
That's what I would recommendfor most people.

Speaker 1 (55:02):
It seems like I recall the movement disorder
specialists are kind of hard toget into.
Is that right?
That's right.
You have to know somebody.

Speaker 3 (55:08):
Well, there's a lack of neurologists throughout the
Southeast and actually most ofthe United States of America,
and even more so the movementdisorder specialists.
So we have 12 movement disorderspecialists at UAB.
We have movement disorderspecialists at least two in

(55:31):
Huntsville one time and effortand energy and money.
So we often will start to trainfolks like myself, where I am

(55:59):
an adult geriatric nursepractitioner and I have an
interest in neurology and then Icome in and receive additional
training and work alongside themovement disorder specialist.
But we do need better ways,what I call to fast track and
get in to see movement disorderspecialist.
We do.

Speaker 1 (56:17):
So once somebody gets plugged in with their primary
care doctor and theirneurologist, then how is the
diagnosis made?
Is it strictly a clinicaldiagnosis or there are any
biomarkers or imaging studiesthat can help?

Speaker 3 (56:28):
So Parkinson's disease is considered a clinical
diagnosis or there are anybiomarkers or imaging studies
that can help.
So Parkinson's disease isconsidered a clinical diagnosis,
meaning that you have aphysical evaluation by a
physician assessing yourmovements, everything from your
eye movements your facialmovements.
We look at how fast you'retapping your fingers, opening
and closing your hands.

(56:49):
We feel for changes in rigidityin your arms, your legs.
We look at balance and we oftenare able to make a diagnosis
through the physical exam,looking at the person's health
history, any recent lab work,and occasionally we will need to

(57:12):
look at further imaging andthose images can include an MRI
of the brain.
But it is not necessary to makea diagnosis.

Speaker 1 (57:23):
And what do you see on the MRI?
That's sort of a hallmark ofParkinson's.

Speaker 3 (57:27):
Well, typically, one of the reasons we don't need to
look at the MRI is because wedon't see significant.
So it's to rule out otherthings.
Yes, to rule out other things.
But there are two other images,diagnostic images and
techniques that we use now.

(57:48):
One is called the DAT scan, andthe DAT scan has been out for,
I want to say, about 12, 13years now.

Speaker 1 (57:58):
Is that D-A-T?
And if so, what does thisletter stand for?

Speaker 3 (58:01):
Dopamine transport scan Okay, cool Is a brain
imaging test that is FDAapproved to distinguish between
Parkinson's disease andessential tremor.
It doesn't differentiate betweendifferent forms of Parkinsonism
but it does help us distinguishif someone has a loss of

(58:25):
dopamine in an area of the braincalled the striatum, and
usually we use this if we havedifficulty diagnosing
Parkinson's.
So that's one test.
The newer test that is quiteinteresting goes back to this
change in pathology withalpha-synuclein inclusions.

(58:49):
We can find alpha-synuclein inskin.
So there's a test called theCy1 biopsy and this test
involves three skin biopsies andit's about the size of a head
of an eraser and the samples aretaken from the upper back, the

(59:13):
lower thigh and above the ankleand they're able to look at
abnormally foldedalpha-synuclein in the nerve
fibers of the skin to help usclarify if the person has the
pathological hallmark of amisfold of proteins called
alpha-synuclein.

(59:34):
So that is kind of excitingbecause we didn't really have a
way to identify Parkinson'sdisease when we really are
unsure of a diagnosis.
And both of these images arehelpful but they're not required
.

Speaker 1 (59:52):
I was talking to some scientific geek friends the
other day and we were talkingabout protein folding.
It's so fascinating if you kindof look at the protein and how
the structure of it.
It's very intricate and I thinkpeople thought we would really
never be able to figure it out.
But AI has figured it out.
It's fascinating.
These sort of supercomputershave figured out how these

(01:00:14):
proteins are folded and so thenthat opens up a whole new
frontier as far as medicaltherapies, and so I think we
have a lot of exciting things tocome, because so many diseases
like ALS, parkinson's, all thesereally have to do with
misfolded proteins.

Speaker 3 (01:00:30):
Yeah, tauopathies.
And yeah, you're right.
So we think we have a betterunderstanding that this is
dysfunction.
How is it happening?
Where does it start?
What's triggering it, thatinflammatory process?
And that's you're right.
It is very exciting.

Speaker 1 (01:00:47):
So once somebody starts having symptoms, how
rapidly does it typicallyprogress?

Speaker 3 (01:00:53):
So the progression of Parkinson's disease is
individualized.
Each person is unique.
Most of the time Parkinson'sdisease is a slowly progressing
disorder.
This goes back to thatstatement of we know.
There are these prodromalsymptoms that may start 5, 10,

(01:01:16):
15 plus years before the motoronset.
So the progression is unique toeach person and it's very
challenging because I'm not ableto tell you what the
progression will look like.
So typically, if you're tryingto get an understanding of the

(01:01:36):
progression, dr David Standard,the chair of the Department of
Neurology, will use thisapproach.
He'll say if you want to lookat what is occurring in a
one-year period and that kind of, those changes that you're
noticing would usually beconsistent with how the next

(01:02:00):
year will be.
Now that's kind of quitesimplified but we don't have a
great way of knowing.
And then there's other elementsof well, if you start to look
at your exercise program, couldyou potentially slow or change
the progress of Parkinson'sdisease?

(01:02:20):
There is debate, but there'ssome encouraging research that
may support that.
So that may also varyprogression for some people.

Speaker 1 (01:02:33):
So at this point, based on what we have for
therapy now, is there any optionfor disease reversal or a cure,
or are we mainly looking atsymptom management and slowing
progression?

Speaker 3 (01:02:45):
We're, at this point, still mainly symptom management
and making those decisions tofocus on your exercise and all
other lifestyle changes that may, by the way, affect other
comorbidities in your life,especially cholesterol and
things that we haven't mentionedbut are essential to living

(01:03:08):
well.
We haven't mentioned but areessential to living well.
That's where the research ishoning in on this.
Can we slow the progression ofParkinson's disease?
And probably, like most things,then it could progress to a
reversal and you know they'relooking in areas including gene
therapy and areas including theneuroinflammation and reducing

(01:03:35):
that or reversing it or stoppingit from happening.
But to date we don't have apharmacological treatment and we
encourage everyone to reallymake their number one medication
exercise and all those otherelements that we've been
encouraging folks to focus onpart of living well.

Speaker 1 (01:04:00):
Okay If somebody were to be diagnosed with
Parkinson's, say a guy in their70s.
If you look at the average lifeexpectancy for a guy, it's
about 78.
So is it fair to say that formost people they're probably
going to die of something elsebefore they die of Parkinson's?

Speaker 3 (01:04:17):
A lot of times that can ring true.
You know we hear this a lotthat people will say I die with
Parkinson's or not because ofParkinson's.
But there are complicationsthat Parkinson's can contribute
to, including fall risk ordifficulty swallowing,

(01:04:39):
increasing the risk ofaspiration or pneumonia.
So we don't want to.
We want to look globally atthat, those risk factors.
We want to look globally atthose risk factors.

(01:05:13):
But yes, a lot of times peoplecan live well with Parkinson's
disease and there, older, weaccumulate little problems.
Somehow this happens as we age.
So most people with Parkinson'shave had something else going
on in their life before they seeus when they're in their 60s or
70s.
But to answer your question ingeneral, yes, a lot of people
will not necessarily die becauseof their Parkinson's disease.
I tend not to focus on thatbecause I feel like it's an

(01:05:36):
overgeneralization, but yes,Okay, so earlier you mentioned
carbidopa, levodopa.

Speaker 1 (01:05:43):
Would that be the standard pharmaceutical
treatment for Parkinson's?

Speaker 3 (01:05:46):
It's considered the gold standard of treatment for
Parkinson's disease andcarbidopa levodopa I believe in
the 1960s is when it wasdeveloped and it is.
One of the reasons it's soeffective is that and I know
we'll talk about this a littlebit further but it's replacing

(01:06:09):
the dopamine.
That's the primaryneurotransmitter.
That's a deficit in the brain.
But there are multiple othermedication options and probably
a little bit too much for me tocover in one sentence.
But not everybody starts offtaking carbidopa levodopa.

(01:06:29):
There are medications likemonoamine oxidase inhibitors,
like rosagiline, and there aredopamine agonists like
pramipexol, ropinerol,apomorphine, roticotine patch.
But most everybody, at somepoint in time in their journey
with Parkinson's, will start oncarbidopa levodopa.

Speaker 1 (01:06:54):
And so how effective is the carbidopa, levodopa?

Speaker 3 (01:06:57):
It's very effective, especially early on in diagnosis
, in treating slowness andstiffness.
Tremor control in particular isa challenging symptom to stop
or slow down.
Not everybody's tremor respondsto the carbidopa levodopa, so

(01:07:17):
it's not uncommon for people totake more than one medication to
try to treat the differentsymptoms of Parkinson's disease,
but it is often highlyeffective.
The challenge with carbidopalevodopa is that it has a
half-life and it wears off,meaning the benefit of the

(01:07:38):
medication is not sustained for24 hours or even 16 hours.
So many people with Parkinson'sdisease a majority have to take
the medicine three times ormore per day, which is a
challenge.
So developing, you know, wethink about ways of stopping the
disease and improving qualityof life, but we also need to

(01:08:01):
work on developing medicinesthat are acting for longer
periods of time, so the pillburden is less and so someone
has sustained benefit duringtheir active time of the day.

Speaker 1 (01:08:15):
Does the carbidopa levodopa have a lot of side
effects or is it pretty welltolerated by most folks?

Speaker 3 (01:08:20):
Unfortunately it's so variable.
The number one adverse effectis nausea and carbidopa is
carbidopa.
Levodopa is actually twomedications put in with one pill
.
The carbidopa prevents thebreakdown of the levodopa in the
gut, therefore allowing thelevodopa to cross into the

(01:08:44):
blood-brain barrier where it'sturned into dopamine.
So the number one side effectis nausea and the carbidopa in
theory reduces that risk factor,but it's still there.
Carbidopa levodopa can alsocause lightheadedness, dizziness
, low blood pressure.
In more severe circumstances itcan increase risk of

(01:09:08):
hallucinations, but that isusually in much more advanced
stages and at much higher levels.
So one of the importantelements of starting any
medication, in Parkinson's inparticular, is to start very
small dose and increase verygradually and to be told what

(01:09:32):
the potential side effects are,when they may occur and what to
do if they potentially occur.
So, for example, nausea Ifnausea occurs with carbidopa,
levodopa Interestingly often asmall carbohydrate snack can
reduce the severity of thenausea pretty significantly for

(01:09:55):
many people.
So you may not need a medicineto block the nausea or even to
change anything.
You may just need to take itwith a small snack until your
body gets used to it.
But if you do have other adverseeffects, especially
lightheadedness, dizziness orother problems, you want to

(01:10:15):
contact your physician.
You want to know who to calland what to do if those occur,
and that is all an importantpart of your healthcare provider
being a part of your team andcommunicating with them, because
you shouldn't be sent home witha bottle of medicine and told
start this.
That's not the way to providecare.

(01:10:38):
You should be told what to do,when to do and what with the
medicine and if there is aproblem, how to address it.
There are really nice littlehandouts that give you kind of a
rundown of potential sideeffects and I recommend folks
download those and we can talkmore about that later.
But you can't keep every bit ofknowledge for every pill you

(01:11:00):
take, so you want to have areference.

Speaker 1 (01:11:03):
Are there any surgical options for Parkinson's
?

Speaker 3 (01:11:06):
Yes, probably one of the most well-known surgical
option is deep brain stimulationand this is where a small
electrode is placed in the brainand the electrode delivers
impulses that kind of disruptsthe signaling.
We think there's a missignalinghappening in the brain and it

(01:11:30):
tries to disrupt that and bydoing so it usually is going to
have significant improvements intremor but also helps stiffness
and slowness.
Deep brain stimulation is aprocedure that requires a
specialist to evaluate you Isthis the right procedure?

(01:11:52):
And go over the risk factors.
You also get a consultationvisit and evaluation with a
neuropsychologist.
So we look at your cognition.
We know that there's a slightincreased risk that surgery on
the brain and deep brainstimulation could affect
cognitive symptoms.
So we want to know how you arebefore you have any surgery on

(01:12:15):
your brain and, of course,you're also going to work with a
neurosurgeon.
It is highly effective, but itis brain surgery, so you
typically are going to have thisprocedure when the medications
are where you have either motorfluctuations or side effects or
not getting the benefit you needfrom the medications before

(01:12:38):
considering a more advancedtherapy.
The other treatment is a surgery, so to say, but what they
consider it non-invasive in thatit is not an implantation.
It's called focus ultrasoundand this is where they use heat
waves and very direct, finefocus of these heat waves on

(01:13:06):
targeted brain tissue to reducethe tremor.
It's mainly used for tremorcontrol not only in Parkinson's,
by the way, but both deep brainstimulation and focus
ultrasound have been used forother forms of tremor, like
essential tremor.
Both of these are invasive inthat you are having an effect on

(01:13:30):
the brain.
The thing about deep brainstimulation is it's modifiable.
You can change the stimulation,the direction, the intensity,
and they're even developing waysthat deep brain stimulation can
be adapted, where itunderstands the signaling of the
brain and reacts to theindividual signaling of the

(01:13:53):
brain.
So this adaptation, this moreadvanced way of stimulating the
brain, is now becoming morecommon.
It doesn't cure Parkinson's,but these treatments do improve
symptoms.

Speaker 1 (01:14:09):
Cindy, didn't you have somebody in your support
group who had deep brainstimulation and who raved about
it?

Speaker 4 (01:14:14):
Yes, yes yes, it was a remarkable improvement in his
quality of life and his abilityto live well.

Speaker 1 (01:14:23):
Do stem cells, gene therapy, microbiome
transplantation have any futurein Parkinson's care?

Speaker 3 (01:14:32):
transplantation have any future in Parkinson's care.
Yes, research, looking at allthree fronts, which they really
provide an opportunity topotentially slow Parkinson's
disease.
When you think about thesepotential therapeutic options,
of course they're complex andyou don't want to do something

(01:14:52):
like gene editing when you don'thave confidence in the
procedure.
So we are still learning aboutthese and there's a lot of
research in these areas.
For example, they're looking atusing the patient's own blood
and converting it intopluripotent stem cells.

(01:15:15):
So that's one area of researchthat's quite exciting because
when you utilize someone's owncells, that immune response is
not going to occur if it's fromyour own body.
Hopefully.
The microbiome also another area, as you mentioned, and we don't

(01:15:37):
have specifics that treatmentsright now outside of the dietary
recommendations.
But, yes, all of these andthere's a lot of great
information we can go over goodresources.
There's great webinars, printedresources and lectures that we

(01:15:57):
can point in the right direction.
It's such, if you're interestedin learning more about this, I
think it'll be encouraging themore you kind of learn about all
that's going on across theworld in the area of research.
And I want to make a real quickplug, real briefly, for the
World Parkinson Congress, fouryears where everyone in research

(01:16:33):
people with Parkinson's,clinician care partners come
together for one conference andthe next one's going to be in
2026.
And researchers leadingresearchers in gene therapy,
stem cell research come and givepresentations on what's going
on in their labs and it's donein a way that everyone comes

(01:16:53):
together and learns about waysto improve the lives of people
with Parkinson's.
So if you want to learn moreabout it, that's one way that
online resources we can give youas well.

Speaker 1 (01:17:05):
Well, that's wonderful.
Thank you so much.
Sounds like an excitingconference.
Are there any new excitingcutting edge therapies in the
pipeline that we can lookforward to hope?

Speaker 3 (01:17:13):
is to improve on time by giving someone the benefit
of the medicine at a steady rate.
So we currently have a way todeliver carbidopa levodopa

(01:17:39):
through the subcutaneous tissue.
It is amazing.
That's exciting, especially ifyou consider someone that needs
to take carbidopa levodopa everythree hours, or if they have
wearing off or bothersomedyskinesias.
These are involuntary movementsthat occur due to the carbidopa

(01:18:03):
levodopa and progression ofParkinson's.
So that is here and now.
It is still in the process ofgetting approval by Medicare, so
we still are working on accessto that.
There's also another pumpavailable and that medication is
apomorphine and that's adopamine agonist that has

(01:18:26):
recently been approved by theFDA agonist that has recently
been approved by the FDA.
This pump may not be as usefulfor some patients because
tolerance of certain medicinesis more challenging, but it is
another treatment option wherethe medicine is delivered at a
steady rate throughout the dayand in night In individuals that

(01:18:52):
are able to tolerate it.
The inconvenience is you dohave to carry around a small
pump device about the size of aone and a half to two cell
phones and you do have to changethe little location of the
cannula patch site.
But considering that it mayimprove your overall on time and

(01:19:17):
the pill burden reduced.
A lot of people find thatbeneficial.
So, in regards to futuretreatments, that adaptive deep
brain stimulation is veryexciting for many folks.
That's here and now and alsoprobably something that more

(01:19:38):
places will be offering.
Medication-wise, they are stilllooking at a couple of newer
medications.
They are forms of like dopamineagonist.
But if you really want to getdown to some of the newer
research, I usually recommendgoing to the Michael J Fox

(01:19:59):
Foundation and looking at theFox Trial Finder or you can also
go to several other resourcesto look up some of the clinical
trials and where they are inpotential phase of the trial and
if they're going to potentiallyhave a new treatment.

(01:20:20):
They can't ever tell usspecifically when that will be
released, but Michael J FoxFoundation does a great job of
keeping that information up todate.

Speaker 1 (01:20:30):
Yeah, tell us about some holistic measures that
y'all might employ, for instance, boxing, balance exercises,
power walking, that kind ofstuff.
Anything else that you wouldrecommend there.

Speaker 4 (01:20:39):
Yeah, there are quite a number of things, Jim.
To Laura's point, everyexercise is just critically
important and it's not justwalking to the mailbox to check
your mail, it's vigorousexercise that will stimulate the
body.
So, as you recommended, boxinghas been shown through research
to actually slow the progressionof the disease down.

(01:20:59):
So there's great promise inthat.
Rock-steady boxing is becomingmore and more evident and much
more available to people indifferent communities.
Tai Chi is another one of thosethings that is very effective
with Parkinson's.
In all of these things youdon't have to go to a gym.
You can look on YouTube, youcan look on Google and just find

(01:21:20):
things that you can do in yourown home in a safe environment.
Yoga also is another thing thatis very helpful to loosen
muscles and to help people feelbetter.
Biking there are programs, Ithink through the Parkinson
Foundation that has a veryformal program for biking.
As Laura said, music therapy,dance, has great promise and I

(01:21:41):
think UAB has a great programwith that, Do they not?
Yeah, the art and medicineprogram at UAB collaborates with
some of our amazing dancers inthis region to have a
Parkinson's dance class atSouthern Works in Homewood
socially is one of the mostdifficult parts of Parkinson's,

(01:22:02):
because anxiety, depression,apathy are some of those
non-motor symptoms that makepeople want to stay inside and
not be a part of society, and sofamilies suffer.
Caregivers suffer with that aswell.
So socialization and making ita point to get out and be in the

(01:22:27):
world and that's one of thegreat things about support
groups they help encourage thatas well.

Speaker 1 (01:22:33):
You know, one of my next questions was going to be
about anxiety and depression,cindy, so what do you all
typically do for that, as far ashow do you address those issues
?

Speaker 3 (01:22:41):
So anxiety, depression, apathy are common.
Non-motor symptoms inParkinson's disease are common
non-motor symptoms inParkinson's disease.
It is estimated that about 50%of individuals at some point in
time in their diagnosis will beaffected by these symptoms.
It is a challenge because thereare some treatments you know,

(01:23:06):
but really it requires lookingat the individual and talking
about what they're doing to helptheir health.
Parkinson's likes to isolatepeople.
It tries to in some ways thesymptoms do, whether it's a
change in mobility.
So just coming out and talkingabout your mood sometimes is the

(01:23:29):
first step, is letting someoneknow or letting it be known to
your healthcare provider if youdon't want to talk about it with
your family.
Usually the treatmentspharmacologically can include,
first of all, removing somethingthat might make your mood worse
.
So first you want to look at isthere something exacerbating or

(01:23:51):
making your mood worse?
We also look at this concept ofimproving on time.
So dopamine we probably aretalking about it as if it just
affects motor symptoms.
It affects mood.
So if we have a way to improvesomeone's on time and improve

(01:24:16):
how they feel throughout the day, sometimes that does have an
impact on their mood levels.
Anxiety, depression.
We also look at treating anysleep symptoms.
We know that poor quality sleephas a significant effect on
mental and emotional well-being,and exercise is also highly

(01:24:40):
recommended, providing ways toget in touch with support groups
, whether it's online or inperson.
With support groups, whetherit's online or in person and I
know, not everybody wants to goout and go to a gym, but getting
outside or doing somethingoutside in the sun.
If you want, wear protectiveclothing, but you need to have

(01:25:02):
some time where you're outsidewhen possible, in nature when
possible, and we do often treatsymptoms with medications as
well.
Again, very individualized.
There is also research thatshows that working with a mental

(01:25:22):
health professional, acounselor, a psychologist, along
with treatment of symptoms withmedication, has improved
outcomes than either treatmentalone, isolated by itself.
So you may want to talk tosomeone, whether it's a
spiritual connection, or workwith a counselor, or maybe even

(01:25:46):
talk to support group leadersabout that as well.
So I would say it'sindividualized.
There are treatments and thetreatment path may vary for each
person throughout their stagein Parkinson's disease.

Speaker 1 (01:26:02):
Yeah, that's great.
Thank you so much.
Really powerful, because Ithink that living with a
progressive chronic disease canbe a lonely journey can
certainly mess with your mind.
And so, cindy, I think at onepoint you were talking about a
gentleman that you knew in thesupport group who saw his pastor
and it was really helpful forhim.
That segues into the nextquestion.
You know I've always encouragedmy patients to put together

(01:26:24):
their healthcare team.
You know, once you get thatdiagnosis, that's a time to
think about.
Okay, who's on my team?
And so tell me please, whowould you recommend that folks
put on their health care team?
We've talked about the primarycare provider, the neurologist,
the movement disorder specialist, et cetera.
Who else would you have on yourteam?

Speaker 4 (01:26:42):
Well, as Laura said we do.
I think people start out withthe primary care provider and
their neurologist.
We would always recommend thatpeople see their neurologist on
a regular basis and try to seetheir movement disorder, like
once a year or so, unlessanything else is indicated.

Speaker 3 (01:26:58):
At least.
But we have some patients thatyou know have other preferences
and we try our best toaccommodate that.

Speaker 4 (01:27:05):
But yes, in general and other people on the team
building episode would be otherspecialists like the urologist,
a dentist.
Dermatologist, because peoplewith Parkinson's are more prone
to get melanoma and other skinconditions.
Optometrist, because the eyesare affected by Parkinson's.
Of course, a physical therapist, and they can work on balance

(01:27:28):
training gait assessment.
Of course, a physical therapist, and they can work on balance
training gait assessment fallsprevention.
Occupational therapists all ofthe therapists.
Speech therapists can help withswallowing issues with the
voice, because the voice doesbecome very, very soft.
Dermatologists, as I said, andcounselors, therapists or clergy
, wherever you can talk aboutthe chronic illness which is, as

(01:27:49):
you said, is very difficult todeal with on a long-term basis.

Speaker 1 (01:27:52):
You all have brought up the issue of falls a couple
of times and let me just mentionI did a whole podcast on falls
and balance and so I would referanybody back to that who wants
to take a look at that.
But it's a big issue I knowwith my mom and dad.
A fall was really the beginningof the end, so I think anything
we can do there can be helpful.
So take a look at that podcastwe did there.
Another thing that you see withParkinson's patients, according

(01:28:14):
to my reading, is sexualdysfunction, and so any thoughts
on that?
Who would they see for that?

Speaker 3 (01:28:20):
Yeah, sexual dysfunction is common in
Usually we would refer to aurologist, in part because you
want to evaluate again globally.
We don't want to just assume itis only due to Parkinson's
disease.
There are specialists thatprovide treatment, but first you

(01:28:45):
want to get an evaluation orreferral and evaluation.
There's also, you know, justdiscussion about changes in
intimacy, beyond perhaps whatsome people's comfort levels are
.
Those changes in intimacy areprobably something that some
people would benefit by workingwith a sexual therapist.

(01:29:08):
Someone that has training,knows how to have the
conversation, knows how to beproductive in ways to help each
couple or the individual.
So I think you know, eventhough this topic is not spoken
as much probably a little lessin the South, it's important,

(01:29:28):
it's a part of your emotionalhealth, your well-being.

Speaker 1 (01:29:32):
Well, it's important for some people and for others
it may not be, but for those whoit is, it can be a big deal.
And, by the way, we did acouple of podcasts on healthy
sexuality for men and women, andon the show we had a wonderful
sexual health therapist namedValerie Padd, p-a-d-d, and you
can go onto the websitemcmandmdcom and see her bio and

(01:29:54):
I think there's some contactinformation there as well, and
she does treat folks remotely,and so if anybody has any needs
in that department, check outValerie.
I highly recommend her.
One more thing about buildingthat team.
It's not always possible, butif you can, it's helpful to have
as many members of the team asyou can in the same hospital or

(01:30:15):
health network.
I know here in Birmingham wehave UAB and this hospital and
that hospital, whatever, andwhen you get people in different
health systems they can'treally talk to each other or
don't.

Speaker 3 (01:30:27):
They can't access your records, for instance, and
so it's always helpful if youcan get people on the same team
at the same hospital.
I'm just saying I agree Ingeneral.
I would prefer that, but thenI'm sitting here as a UAB
provider, so I don't want to beseen as biased.
But yes, in general, and partof that is because of the

(01:30:48):
complexity of our health caresystem.
This is not because of justParkinson's itself, it's also.
Our health care system has beendesigned in a way without the
individual in mind.

Speaker 1 (01:31:04):
So what about the Parkinson's support groups for
patients and for care providers?
How do they play a role in thisscenario?

Speaker 4 (01:31:12):
I think they're critical as far as coping with
the disease and learning, andthat's one of my main
motivations of doing the supportgroup in Anniston is that,
again, when we were dealing withPaul with his Parkinson's, we
knew nothing, and so I guess I'mkind of overcompensating here
as far as education is concerned, but that's one of the things

(01:31:33):
we try to do in our supportgroup at least, and I think most
do that to some extent.
Other values of support groupsit's a sense of community.
Rock Steady Boxing does thingslike that, and Tai Chi and, like
you said, going to the gym andit helps people feel like they
are not alone in this.
It's an opportunity to sharelike experiences, similar

(01:31:54):
experiences, share opinions, getopinions, get input into
certain issues that people arehaving, get advice in a safe
environment.
It is learning about resources,both local and statewide, and
improved quality of life.
I think it helps to reducedepression, and I think
depression and anxiety are bothunder-evaluated and

(01:32:18):
under-treated and they have moreimpact on the quality of life
than the motor symptomssometimes.
And it's important to know thatsupport groups are both
in-person and online.
There are many organizationsthat have online support groups
both for caregivers and forpeople with Parkinson's
themselves, and so they're veryparticular.

(01:32:40):
I remember going to you may notknow this, jim when we were
dealing with Paul, with hishallucinations and his delusions
, we knew something was wrong.
And I remember going to aAlzheimer's support group in
Anniston because that's all theyhad and it did not meet my
needs at all.
It was just a completelydifferent set of issues.
And so my point is that it'sreal important to find a support

(01:33:03):
group that does meet your needsand will provide information
for the issues that you'redealing with.
And they're fun, like Brooklyncame to our support group last
month and we did the paintingand it was really fun.
And I think you learn copingskills through support groups.
And there are lots and lots ofvalue.
But they're not for everyone, Ido admit that, and I think some

(01:33:25):
people are afraid to go to asupport group because they're
afraid they're going to see whatthey're going to be down the
road.
But we encourage don't compareyourself to anybody else.
Everybody handles theirParkinson's and progresses in
different ways and so it's notfor everybody.
But they sure do provide a lotof support for some people.

Speaker 3 (01:33:45):
I agree, I wholeheartedly agree.
One of the things I try toemphasize is that oftentimes
I've learned something aboutParkinson's disease because I
attended a support group, that,whether or not it's because

(01:34:05):
someone told me about anexperience they had.
But I'll give a great example Agentleman that used to lead a
support group in the Huntsvilleregion and he had difficulty
with excessive drooling.
And drooling is a commonsymptom in Parkinson's and it's

(01:34:26):
due to reduced swallowingfrequency.
And while we have a fewtreatments for it, like botulism
toxin injections, we don't havea way to stop it.
So this gentleman was adaptingto it and one of the ways he did
is he got these little sweatbands on his wrist.

(01:34:49):
Did is?
He got these little sweat bandson his wrist and the drool
wasn't major.
So he would, instead ofcarrying napkins or a
handkerchief, he would just putthe little sweat band to this
corner of his mouth and that wayno one really noticed the drool
.
It addressed the fact that hewas having mild symptoms and it

(01:35:13):
didn't stop his day.
So when he exercised he justwent like that and put the
little sweatband to the cornerof his mouth and kept going with
his day.
That's not a treatment you'regoing to learn in a clinical
environment, and it's notsomething that fixed his problem
, but it adapted to his needsand it helped him.

(01:35:35):
So that's what's amazing is,when you are an individual
living with Parkinson's and acare partner, you become experts
and you design ways to adaptthat have not been thought about
, and that's great, and we wantto utilize that information
between one another in helpfulways.

Speaker 1 (01:35:56):
And the groups really help us get together and
brainstorm and learn from eachother.
Right, and I've been to yourgroup, cindy.
It was wonderful, I reallyenjoyed coming over, but I could
see that it was not onlyhelpful for the patients but for
the care providers as well, andso that was great.
And one thing you kind ofalluded to was that some people
are reluctant to come becausethey see people who may be
further advanced and they say,well, gee, that's my future.

(01:36:18):
And I think that's one of thechallenges of chronic disease,
that we could all maybe benefitfrom a counselor or whatever.
But it's trying to sort of livein the moment and be present in
this day and not really live inwhat am I going to be like two
years from now?
But that's easier said thandone.
But as much as we can sort oftry to be present in the moment,

(01:36:41):
then that's helpful.
And I think that, just like alot of things in life, that
takes practice and attention.
And let me twist that around Ithink sometimes we can if we
look.
You don't have to look too farto realize there's a lot of
people who have it worse offthan you do, and so if you can
sort of wake up every day with asense of gratitude right, okay,

(01:37:02):
I have Parkinson's, but there'sa lot of things I don't have.
Okay, and focus on the good inyour life and focus on gratitude
and I think that can go a longway.
But again, easier said thandone.
But tell us about the LivingWell with Parkinson's Disease
program.

Speaker 3 (01:37:20):
Well, we have a program called the Good Start
Program for people that arediagnosed recently with
Parkinson's.
Although we highly encourageanyone interested in learning
recently with Parkinson's,although we highly encourage
anyone interested in learningmore about Parkinson's disease,
this program is designed tointroduce you to some of the
topics we talked about today.

(01:37:41):
What is Parkinson's?
What are the treatments?
We talk about diet.
We incorporate informationabout exercise.
What is building a health careteam?
How can I do it?
And that's about the program isdesigned to be presented in
small group atmospheres.

(01:38:04):
People to be more interactiveallows for more time for people
to ask their questions.
We also try to bring in alliedhealth care providers, including
speech-language pathologists,occupational therapists and

(01:38:25):
physical therapists, and whilethey don't represent every
member of the Parkinson's careteam, they're some of the more
vital members in that you havean ongoing relationship with
them that oftentimes will spanfour or six-week intervals, two
or three times a year, and soyou're introduced to those
professionals and givenopportunity to talk.
And then probably one of themore important aspects of it is

(01:38:50):
we try to give you locations, tofind reliable resources and to
let you know about folks likeCindy, their leading support
groups and connecting you withresources.
So even if you are in themiddle of Alabama, you know what

(01:39:13):
phone number to call, you knowyou can go to an online support
group and, although it's achallenge to live in these rural
environments in regards toaccess to some of the resources,
we want to be able to give youways to connect, because most
people and again we need toimprove our healthcare system

(01:39:35):
will say I spent 30 minutes inthe clinic and that was it.
You know, 30 minute visit andthen I see him again in six
months, so you're not going tobe able to get what you need
just within those 30 minutes.
So how can we provide thebenefit of education

(01:39:59):
opportunities?
To connect you to resources isand we can leave some
information with you about whereto connect to it.
But if you have not gone to abasic education program about
Parkinson's disease, I wouldprobably start with either that

(01:40:21):
program or there's a few othersout there as well.
I wouldn't say that one isbetter than the other.
Part of it is just do youprefer to learn online in person
?
What type of learning style doyou need and where are you in
the acceptance phase?
So we are probably going to tryto build on these programs

(01:40:42):
maybe create something forpeople that have more advanced
symptoms in the future, butthese programs are also being
developed by feedback fromindividuals attending, so we're
hoping to modify them in thefuture based on what people want
, what they're telling us.

Speaker 1 (01:41:00):
Yeah, that's great.
Well, any resources that youhave, if you'll send them to me,
I will make sure to put them onthe website so people can
contact those.
You know I've always loved theterm care for the caregiver and
I think sometimes thesecaregivers are really struggling
and so I know in your supportgroup against any y'all help
them there.
But what else can we do as amedical community or society to
support the caregivers?

Speaker 4 (01:41:21):
Well, there there are support groups specific to
caregivers, and it is, it isessential that they get support
from family friends, but not andagain, not everybody with
Parkinson's has a caregiver, hasa provider, has a care partner
in their household.
So the family and friends isalways critical.
I don't think we could havegotten through our years, jim,

(01:41:43):
without our family and friends.
That was critical.
So anything else, laura, thatyou have least one other
connection.

Speaker 3 (01:41:51):
That's about them, not about necessarily seeking
something out for the loved onethey're caring for, but who is

(01:42:16):
it?
Is it a friend?
Is it a support group member?
Who is your sounding board?
Who is at least one specificperson?
And we probably, because weknow that the prevalence is
increasing the importance ofhelping care partners, whether

(01:42:39):
that's something that may seemsimple, but proper ergonomics is
an important concept.
Do we need to start developingprograms where we help people
understand how to move theirbody so they don't have an
injury when helping their lovedone?
So we have a lot of room togrow in how we can support care

(01:43:01):
partners.
We do know that it actuallyincreases risk of depression and
other symptoms.
Caregiver burden can do that.
It doesn't do it to everyoneand it doesn't mean that person
doesn't care.
That should never be thought orsaid.
So what I would say is we havesome resources, but we have a

(01:43:24):
long way to go.
We need improvement in thisarea.

Speaker 1 (01:43:28):
Just a real quick shout out to Miss Martha, who
used to come and help us.
She was such a wonderful lady.
She always called my dad Papaand he learned to love her and
she was so helpful to us.
Sometimes she gave Cindy or mymom a break and it was really
great to have her around.
So if you're listening, missMartha, we love you very much.
I've heard the term hospitalkit.

(01:43:49):
What is a hospital kit?
Can you tell us more about that?

Speaker 4 (01:43:52):
Well, let me just start by saying one of the most
frightening times in the life ofanybody with Parkinson's is
being hospitalized.
It can be extremely terrifying,and it was for us on numerous
occasions.
So is there a hospital kitspecifically?

Speaker 3 (01:44:08):
for maybe so.
Is there a hospital kitspecifically for the baby?
Yeah, so the Parkinson'sFoundation did research looking
at the awareness andunderstanding of Parkinson's
disease for nurses andphysicians in a couple of
hospitals and they found outthat most people have little

(01:44:30):
education and understandingabout Parkinson's disease in the
hospital, setting a way forpeople to help prepare them if

(01:44:54):
they were to have to behospitalized, whether it's
because they need a hipreplacement or an emergent or
urgent care.
The hospital kit provideslittle handoffs you can give to
healthcare professionals thatbriefly talk about Parkinson's
disease, medications that arecontraindicated in Parkinson's,
that it's important to get theirmedications on time, that

(01:45:17):
Parkinson's can cause pain, thatParkinson's can.
That there's an increased riskof hallucinations, delusions,
whenever you're hospitalized.
Usually it's due to delirium.
Maybe someone has an infectionor some other, maybe it's
induced by medications.
Oftentimes we know that there'sa higher risk of decline due to

(01:45:45):
hospitalization.
Just the hospitalization itselfnot the reason for being
hospitalized, but being in thehospital itself can contribute
to a decline in Parkinson'ssymptoms Oftentimes.
This is what the hospital kitis trying to avoid by making
sure they don't get medicinesthat block dopamine, that

(01:46:08):
they're given their medicationson time and that the healthcare
providers have resources aboutParkinson's.
Probably even with thatresource, patients and
caregivers, care partners, willsay we still had difficulty.
So I encourage most folks todon't hesitate to call your

(01:46:33):
neurologist, your movementdisorder specialist.
I can't always directlyintervene but I can do my best
to try and say let me talk tothe attending.
Is there someone that I cancorrespond with and tell them
that Zyprexa or whatevermedication is contraindicated

(01:46:56):
and provide some education whenand where needed.
Letter that you can fill outthat says here's Parkinson's,
here's the symptoms, and thephysician can sign it for you so

(01:47:16):
you can present it to thesurgeon or give it to the
anesthesiologist, because someof the medications that are
commonly used block dopamine andtemporarily make symptoms worse
.
It's not permanent, it'stemporary, but still, if we can
avoid it, it's important.
The hospital kit can bedownloaded, I believe, and we

(01:47:37):
can give a link to that.
Ideally every person would haveit, every person would review
it and have access and have it,so it's easy to grab.
I had one individual that keptone in their car, which I
thought that was great.
But hospitalizations,unfortunately they happen.

(01:47:59):
There is an increased risk ofhospitalizations due to
Parkinson's because of falls andinjuries and injuries.
So, while we never want one, Iwould try to get that
hospitalization kit or hospitalkit is what they call it.

(01:48:21):
Another term is aware in caredone by the Parkinson's
Foundation and just have kind ofthat knowledge base that when
you go in there you are probablygoing to be the expert in
Parkinson's, probably not theindividuals that are caring for
you.
You are probably going to beeducating them and advocating
for your loved one.
While that shouldn't be thecase, that is unfortunately

(01:48:44):
common.

Speaker 1 (01:48:46):
Everybody in the hospital needs an advocate.
Absolutely Sabotru right.

Speaker 3 (01:48:51):
Absolutely.
I've had personal experiencesand it is very true you should,
when at all possible, havesomeone with you something like
this a dog can have ticks andfleas at the same time.

Speaker 1 (01:49:12):
Now, how is that related to Parkinson's?
Well, my dad, as his diseaseprogressed, he ended up with
dementia and, ignorant as wewere, we thought, oh, he just
happens to have two entirelyseparate bad diseases like ticks
and fleas, separate diseases.
So anyway, little did we knowthat it was just a different
expression of the Parkinson's.
It's called Lewy body dementia.
It's usually made later on inthe disease.

(01:49:36):
But anyway, do me a favor andtell us, tell the audience, just
a little bit about Lewy bodydementia in association with
Parkinson's.

Speaker 3 (01:49:43):
Okay, so there's a couple of terms.
One is Parkinson's disease withdementia and one is dementia
with Lewy body or Lewy bodydementia.
And what we believe weunderstand is that Parkinson's
disease that starts off as thatclassic symptom where you mainly

(01:50:07):
start with motor symptoms whileyou have multiple other
symptoms.
Oftentimes later on in thedisease, which it can be several
years, there is an effect onthe brain in the area of
cognition, reasoning.
As the disease progresses, itaffects those areas of the brain

(01:50:28):
.
It affects those areas of thebrain including perception,
vision and more autonomicdysfunction, fluctuations in
blood pressure, alertness,things like that and this is
when it progresses.
We usually will call itParkinson's disease with

(01:50:55):
dementia or dementia with Lewybody.
So it's an area of the brain asit's being affected, is going
to increase symptoms likehallucinations where you see
people or bugs or animals.
There are some individuals thatare not distressed by this and I
can't tell you why.
I think it's just one of thoseunique things.
Well, they think they're veryreal.
They think they're very real.
And then there's other peoplethat have false beliefs that

(01:51:19):
counter to any reasoning.
They cannot let them go.
Those are called delusions, anddelusions are false beliefs and
you cannot let them go.
One delusion can be somethinglike you think your spouse is
unfaithful.
There's no evidence to this,but your mind has convinced you

(01:51:40):
of that.
There's also another phenomenonthat are illusions.
An illusion is a misperceptionof an object, like, for example,
you look on the floor andthere's something crumbled up
and you think it's a cat that'snow entered your house and you
get closer to the crumbled upobject and you realize oh,

(01:52:04):
that's a shirt that I dropped onthe ground.
That's different than ahallucination.
There was an object there andyour mind misperceived it
temporarily, hopefully.
But dementia with Lewy bodiesusually entails the combination
not always, but you can havehallucinations.

(01:52:26):
By the way, the hallucinationsaren't always visual.
You can have olfactory, whereyou think you smell something
and it's not there.
You can have sensory, where youthink something is touching you
and it's not there.
So you can have auditory, whereyou think something like
someone's knocking at the doorand it's not occurring.

(01:52:48):
So if there's a sense involved,there's a potential that
there's a misperception of thatsense, and vision is probably
one of the more commons.
It can be very alarming to thepoint where you think someone
has maybe invaded your home orthere's an animal loose in your

(01:53:09):
house and that is real to theperson experiencing them.
It's extremely real, and tryingto convince them that it's not
real is almost impossible.

Speaker 1 (01:53:20):
It's impossible.
We tried, it's impossible, yeah.

Speaker 3 (01:53:22):
So oftentimes we want to look at is there anything
exacerbating these symptoms?
So our medicines are workingwhere?
Where are most of theParkinson's medicines working In
the brain?
And even if they don't work inthe brain, there's plenty of
medicines.
Benadryl is a great example.

(01:53:44):
It can give you acute confusionin the right stages in your
life.
Older individuals can have thathappen.
So you look at are there causesfor this to be worse, outside
of the disease itself, somethingexacerbating this symptom?
Amantadine is a classicmedication that will make these

(01:54:07):
symptoms worse.
So not only do you want to lookat how the disease is affecting
the brain, you want to look atthe medicines, all of the
medicines.
You want to look at theenvironment.
Do you have appropriatelighting that might reduce the
misperception of something?
You want to look at yourhydration and also make sure

(01:54:28):
that the individual, especiallyif they have a sudden change in
these symptoms.
You want to assess for aninfection like a UTI.
There are treatments forhallucinations and delusions
caused by Parkinson's diseasewith dementia, and one of them
is Pemivanserin, and it takes awhile for it to work.

(01:54:51):
It is effective for many people, but it doesn't mean it's the
right treatment for everyone.
You definitely in the earlystages.
If someone with Parkinson's hasthe very early symptoms,
usually they'll say you know, Isaw somebody walking past me, or
they'll start to hint thatthere's something going on.

(01:55:13):
You want to call your provideras soon as they start to say
something's going on.
I have a little bit of a funnystory where I've had someone say
that they were seeing roachesand the family said, oh, that's
probably a hallucination.
And no, they were seeingroaches.
So don't dismiss everything asa potential hallucination.

(01:55:39):
If someone is experiencing it, Ihighly recommend not arguing.
Maybe say are you seeingsomeone?
Ask them maybe, what they'reseeing.
Try to provide reassurance weare safe.
I'm going to make sure thatperson's safe and then maybe

(01:56:01):
consider redirecting them toanother room.
Think about something else.
Give their mind an opportunityto let go of what they're
focused on and we do have somespecialists in memory disorders
that can also help address thesesymptoms as well.

(01:56:23):
And in general, I would say theother resource I really love is
the Lewy Body DiseaseAssociation has some really
great resources for carepartners, including videos and
handouts.
But you want to let yourproviders know so they can at

(01:56:55):
least make sure.
At the very least can we reduceor change something that's
adding to the problem.
It is a horrific thing to besitting there and believing that
you are.
Usually it's a feeling of beingattacked and I can't imagine
what it feels like, but mostpeople describe it as fearful
and scary.

Speaker 1 (01:57:09):
And very real in their minds.
Okay, we've learned so muchfrom you guys today.
Thank you so much, but we'regoing to start to wrap this up.
Just a few more questions, andso what are some of the biggest
misconceptions about Parkinson'sthat you'd like to clear up?

Speaker 4 (01:57:22):
I think one is that Parkinson's is a disease of a
tremor and there is so much moreas we've been talking about all
the non-motor symptoms that canbe listed on several pages.
And there is so much more aswe've been talking about all the
non-motor symptoms that can belisted on several pages.
And it doesn't mean thatanybody with Parkinson's is
going to get every one of those.
Nobody's going to get every oneof them.
But it's so much more than justa tremor and I think that's why

(01:57:43):
I was so confused with our dad,because his tremor was very,
very mild and it was just hardto believe that he really had
Parkinson's.
Another misconception is thatit's a disease of the elderly.
As Laura said, michael J Foxwas diagnosed when he was 29.
We have a mutual friend who wasdiagnosed when she was 37.
And so it does affect peopleearlier.

Speaker 3 (01:58:19):
So that's all I have.
I think one of themisconceptions I usually talk a
lot about is that we are able tokind of predict the progression
for each individual.
While I think that we have waysto maybe help us understand, we
still don't know how to do that.
Another one that I sometimesmyself take for granted is if an
individual with Parkinson'sdisease looks pretty good, that

(01:58:40):
they feel good and that's notalways the case we need to talk
about all the things that theymay be experiencing, Because
even if you don't see a tremor,you don't really notice much
change because the medicines areworking well or they really
have mild symptoms.
We want to make sure we assessfor, as Cindy mentioned earlier,

(01:59:01):
all of the non-motor symptoms,because quality of life is
greatly impacted by them and wehave potential ways to help, or
just sometimes, just sharing itin itself is therapeutic, just
the sharing and letting peopleknow.
Also, one that I sometimes getasked is will the medicine stop

(01:59:25):
working for me after so manyyears?
Parkinson's is graduallyprogressing.
So we do adjust the medicationsand adapt.
You know how you do certainthings, but the medications
usually are having a benefitthroughout the person's walk
But we just have to manage.

(01:59:46):
Am I going to create moreadverse effect than benefit, or
what am I doing in regards totheir quality of life with this
treatment option and you have tobe thinking about that on an
ongoing basis.
It's not one treatment andwe're done.
This is a continual processwith your care team, and I think
that is kind of what I wouldencourage most folks to know is

(02:00:13):
that there's usually either newtreatments or adjustments in
treatments that we have, and notto just say, oh well, I read
that it's going to stop workingin 10 years.
That is not true.

Speaker 1 (02:00:26):
Yeah, and that segues into a misconception I'd like
to mention.
I think sometimes people think,well, gee, we need to hold off
on the medication the carbidopa,levodopa and just suffer with
the symptoms for another five,10 years because it's only going
to have a five 10-year lifespan.
But that's not true.
You can go ahead and start it.
It's going to improve yourquality of life and if you don't
start it, you've lost thatwindow of really having some

(02:00:48):
good quality there and then, asyour disease progresses, you can
adjust the dose and it'll stayactive.
So I think that's an importantmisconception there.
That's right, I agree, okay,well, let's see now, if you
could change one thing about howwe approach Parkinson's in the
medical community or as asociety, what would it be?

Speaker 3 (02:01:05):
This is a deep question.
So I think, one of the biggestchallenges we have some
knowledge and understanding, buthow would I go about removing
some of these risk factors inour culture, in our society?
How can we do this?
How can we successfully addressways that we know can impact

(02:01:30):
the risk of not only Parkinson's, by the way?
So if you were to ask me, mygoal would be that nobody had
Parkinson's disease or anyneurologic disorder that impairs
their life.
And if we know that there arethese risk factors, I think as
health care providers, we thinkabout treatments.

(02:01:53):
I think that a lot of us are nowthinking about prevention more
and more.
So that's probably one of my.
We need to all get together andstart thinking about our global
health, or our community health, If you want to think just
within your little community.
What can be done?

(02:02:15):
There's also outside challengesyou mentioned before, where we
don't have enough medicalproviders.
So part of me thinks in thefuture, if I have a way to slow
or reduce the progression ofParkinson's, how am I going to

(02:02:36):
help that person that has veryearly prodromal symptoms, before
they start to develop motorsymptoms?
So thinking ahead in those ways, I think, is a challenge that
we should be discussing in thoseways, I think, is a challenge
that we should be discussing.
We may not have a formalizedway that we're aware of, but

(02:02:57):
when we do, are we going to beready to help folks?
How are we going to walkforward and not be chasing but
go?
Oh, I already have this mappedout.
We have two or three steps wealready have planned and instead
of that reactive process thatkind of is what our healthcare

(02:03:19):
system has utilized for many,many years.

Speaker 1 (02:03:24):
So if someone listening wants to support
research or advocacy forParkinson's, where would they
start?

Speaker 3 (02:03:30):
This is a good question I typically recommend.
For example, I work with theAmerican Parkinson's Disease
Association.
They collaborate with UAB tohelp support people in the state
of Alabama.
So we have information on thewebsite that can help people
find information about researchand advocacy.

(02:03:52):
But there's a lot of othergreat programs and resources
with other organizations.
We mentioned the Parkinson'sFoundation.
Uab does have many clinicaltrials.
Even if you just want to learnabout what's going on in your
area, we have people that are inthe physical therapy department

(02:04:16):
studying Parkinson's disease.
So if you think, well, I'm notinterested in this one area, but
I would love to learn moreabout therapy or exercise.
We do have some of thatinformation.
If you are interested inadvocating for Parkinson's
disease, I would first connectwith the person that's spurring

(02:04:39):
you on to do that.
If it's yourself, what are youinterested in?
And then I can maybe helpconnect you to ways to develop
that more, even if it's justtalking to somebody else that's
done one of these bicyclingevents We've had them here at
Oak Mountain State Park.

(02:04:59):
So I would say connectingeither through one of these
organizations.
Of course you can contact me.
I'll leave my information andjust making those connections to
find what is it that you'reinterested in and how you can
make a way forward inParkinson's disease through that

(02:05:20):
interest, because really it'sgoing to be about people coming
together that are diverse,thinking in ways that nobody
else has thought about.

Speaker 4 (02:05:29):
Also with organizations like Rock Steady
Boxing.
They always need volunteers.

Speaker 1 (02:05:35):
Yeah, years ago I heard this really wonderful
thing on NPR about park anddance and it was pretty cool,
and they actually havevolunteers who come in and dance
with these park and dancepatients, and so that's kind of
cool as well.
Well, all right.
Well, and you mentionedphysical therapy.
I'll just do a quick shout outto them.
A lot of the neurologists havephysical therapists they can
refer to who specialize inpeople with neurologic issues

(02:05:57):
like Parkinson's.

Speaker 3 (02:05:58):
Absolutely LSVT.
Absolutely.
Ideally, you want someonethat's specialized and you know,
collaborative you know.

Speaker 1 (02:06:07):
So is there anything that I've not asked you about
that you'd like to share with usbefore we close?
Have we covered it?

Speaker 3 (02:06:15):
I would say you've covered a huge amount.
It's amazing and I just wouldencourage someone diagnosed with
Parkinson's disease, that youare not alone.
Like Cindy mentioned,parkinson's does try to isolate,
but you're not alone andthere's a lot of folks that are
probably closer than you realizeresources or just a listening

(02:06:40):
ear.
So I encourage everyone thatfeels that way to reach out and
just know that folks like myselfand other people across the
state are here for you.

Speaker 1 (02:06:53):
Well, that's great.
As we wrap this up, do eitherof you have a story of a
particular patient or familythat really stuck with you you'd
like to share with us?

Speaker 3 (02:07:02):
I do have one story about how Parkinson's really
impacts probably every personlistening.
They probably know someone.
So when I first came to UAB, Iwas a clinical nurse and would
go in and do the what we callinterval history, meaning how

(02:07:24):
are you doing since your lastvisit?
And I would document that forthe physician since your last
visit, and I would document thatfor the physician.
And about my second day workingthere, I opened the door and I
see a gentleman that I had knownsince I was seven years old and
of course he didn't know.
You know, I was seven or eightor nine when he knew me and then

(02:07:48):
you know, by the time you're ateenager, you look a little
different when you're in your30s.
So he didn't know who I was.
But when I said, hey, it's me,you know Drayton Lieb's daughter
, and his whole demeanor changedand we made a connection.
And so I realized in thatmoment, like just my second day,

(02:08:28):
I was like I realized thatthere's a connection out there,
whether I know it or not, withsomeone with Parkinson's disease
, probably even beyond thisgentleman that I had known all
my life and that I in thatmoment I felt like okay, he's
here, he's giving, he's givingwhat I would consider every
effort and everything he did,and so I felt like he's here to
teach me, and I just want toencourage folks in that you

(02:08:50):
probably have a connection andyour connection you can have a
positive impact for that personwith Parkinson's disease.
And never in the back of mymind would have been someone
that I had known since I was alittle girl.
And that gentleman, his wife,led the local Parkinson's

(02:09:19):
support group, and so she taughtme the importance of support
groups.
Mary taught me the importanceof support groups and her
husband taught me the importanceof listening.

Speaker 1 (02:09:31):
Well, that's a great story.
Thank you so much for sharing.
So if y'all want to leave yourcontact information, I'll be
sure to put it on the website atmcminnmdcom.
It'll be there on the homepageat the very bottom, but also
I'll have the guest bios and atthe bottom of the guest bio I'll
have contact information foryou.
But that should about do it forour discussion of Parkinson's
disease and I thank you so much,laura and Cindy, for joining us

(02:09:52):
today and for bringing yourpassion, your experience, your
knowledge.
It's just wonderful to hear it.
Thank you so much, and I foundit so informative and I hope
that our audience did too.

Speaker 4 (02:10:02):
Thank you, I really enjoyed it, thank you.

Speaker 1 (02:10:04):
Well, that about does it for this discussion of
Thank you so much for listening.
We hope we were able to sharesomething with you that was
helpful and interesting to you.
That's why we do the show.
Please do take a moment to rateus on iTunes.
These reviews really do make adifference for us.
Also, if you like the podcast,then take a moment today to tell
a friend about it and help usspread the word on
evidence-based, holistic,functional and integrative

(02:10:26):
medicine.
If you'd like to reach out tome to comment on the show or to
make recommendations for futuretopics, then you may do so at
drmcminn at yahoocom.
This is Dr McMinn signing out.
Take care and be well.

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