April 10, 2025 • 39 mins
Are you living with Parkinson's disease and finding that the challenges extend far beyond tremors and movement difficulties? In this crucial episode of the Live Parkinson's - Live an Exceptional Life podcast, we delve into the often-overlooked world of non-motor symptoms (NMS). We unpack these "hidden battles" that can significantly impact your daily life, from sleep disturbances and mood changes to cognitive issues and autonomic dysfunction. Learn why recognizing and addressing these symptoms is vital for improving your overall well-being and living a more fulfilling life with Parkinson's.
In this essential episode, you'll discover:
- What are Non-Motor Symptoms (NMS) in Parkinson's? Understanding the wide range of symptoms beyond movement, including sleep, mood, cognition, pain, and more.
- Why Non-Motor Symptoms Matter: Learn how these often-invisible challenges can significantly affect your quality of life, sometimes even more than motor symptoms.
- Key Non-Motor Symptom Areas: We explore common issues like sleep disorders (insomnia, RBD), mood changes (depression, anxiety, apathy), cognitive shifts, and autonomic dysfunction (constipation, blood pressure issues).
- Practical Strategies for Managing NMS: Gain insights into potential approaches and therapies to address these challenging aspects of Parkinson's.
- Empowering Yourself for Better Living: Discover how recognizing and communicating your non-motor symptoms can lead to more effective care and a higher quality of life.
Ready to take control and live an exceptional life with Parkinson's?
- Stay informed: Subscribe to our free monthly newsletter at liveparkinsons.com for the latest insights, tips, and resources to navigate life with PD.
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Disclaimer: This podcast is for educational purposes only is not intended to treat or diagnose Parkinson's Disease. Please ensure that you are following the treatment plan developed by your doctor. Please ensure before starting anything new you get approval from your doctor. The information being provided is based on my own personal experiences and does not guarantee that it will benefit everyone.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
Hello and welcome to Live Parkinson's live an
exceptional life.
I'm your host, chrisKustenbader, and I've been
living an exceptional life withParkinson's for the past 15
years.
The mission of this podcast isto help as many people as
possible living with Parkinson'sto lead a great quality of life
.
Today's topic is Parkinson'shidden battles addressing
non-motor symptoms for betterliving.
Parkinson's can feel like aconstant fight, and while the
(00:33):
motor symptoms are often thefocus, the non-motor symptoms
can be just as debilitating.
But what if I told you thatunderstanding and addressing
these hidden battles from sleepto mood, to sensory changes
could unlock a significantimprovement in your daily life?
Join us as we explore how tocontrol our non-motor symptoms
(00:54):
and live a better life withParkinson's.
Now, one thing I've learnedliving with Parkinson's for 15
years is that each day can bringdifferent challenges Balance
issues, tremor, walking problems.
But in addition to these motorsymptoms, a number of non-motor
symptoms that I've experienced,including sleep issues, fatigue,
anxiety and cognitive changes,have all had a negative impact
(01:16):
on my quality of life.
So in this episode, I want toshare with you tips and
strategies I've learnedpersonally and from others on
dealing with the non-motorsymptoms to live your best life
with Parkinson's.
Now I'll also be sharing expertadvice on strategies to help
you manage your non-motorsymptoms.
Now, before we dive intotoday's episode, I want to
remind you that if you'relooking for expert advice on
(01:37):
building a strong Parkinson'scare team, check out my Building
your Parkinson's Care TeamResource Guide and Workbook, and
you can find it atliveparkinsonscom or on my Ko-fi
shop at ko-ficom slashliveparkinsons.
And if you'd like to supportthe podcast to help keep it
running, visit my Ko-fi page atko-ficom slash liveparkinsons.
And thank you for your support.
(02:00):
All right, let's take a look atwhat we'll be discussing in this
episode.
We're going to lead it off withdefining what non-motor
symptoms are and how they affectour quality of life.
Then we'll transition to thedifferent categories of motor
symptoms that you may experience.
Now remember Parkinson's isoften referred to as a boutique
disease, meaning, while a numberof symptoms are common between
everyone, each person willexperience a variety of symptoms
(02:22):
that may be different fromsomeone else, so everyone's
journey is going to be different.
Then it's time to look at eachcategory of non-motor symptoms
in detail and give you specific,actionable strategies to manage
each one as you live your bestlife with Parkinson's.
After this, we'll transitioninto why recognizing these
non-motor symptoms matter andthen close it out with resources
(02:43):
that you can use to manage yournon-motor symptoms.
Now let me ask you a questionwhat are your most bothersome
non-motor symptoms and how dothey affect you on a daily basis
?
Now I'd love to hear yourthoughts and you can either hit
the text me in the podcastdescription or drop me an email
at cacusty at liveparkinsonscom.
Or drop me an email at cacustyat liveparkinsonscom.
(03:04):
Now my top three, starting withnumber one, are sleep issues,
followed closely by cognitiveissues, memory and organizing,
and fatigue.
So what are non-motor symptoms,why do we get them and how do
they affect us?
All right, let's break down thequestion into different parts
and we'll start off with.
What are non-motor symptoms ofParkinson's?
(03:25):
Non-motor symptoms ofParkinson's encompass a wide
array of symptoms that do notprimarily affect your movement.
According to the articleParkinson's Disease by the
Cleveland Clinic, they statethat in years past, experts
believed non-motor symptoms wererisk factors for this disease
when seen before motor symptoms.
However, there is a growingamount of evidence that these
(03:51):
symptoms can appear in theearliest stages of this disease.
That means these symptoms mightbe warning signs that start
years or even decades beforemotor symptoms.
They note that non-motorsymptoms with potential warning
symptoms include autonomicnervous system symptoms those
are the ones that you don'tconsciously control and include
orthostatic hypertension or lowblood pressure when standing up,
(04:14):
constipation, urinaryincontinence and sexual
dysfunction, depression, loss ofsense of smell or anosmia,
sleep problems, including rapideye movement, behavior disorder,
restless leg syndrome and thentrouble thinking and focusing.
So it's important to note thatnon-motor symptoms can appear to
any stage of the disease, andsometimes even years before
(04:37):
motor symptoms are noticeable.
Now let's look at the secondpart of my question why do we
get motor symptoms?
Basically, the underlying causeof non-motor symptoms in
Parkinson's is the same as formotor symptoms it's the
degeneration and loss of nervecells in the brain.
Now it's not just thedopamine-producing neurons in
the substantia nigra of thebrain that are affected.
(04:59):
Now, when this area of thebrain begins to have
dopamine-producing neurons dieoff, motor symptoms of
Parkinson's can becomenoticeable.
The accumulation of a proteincalled alpha-synuclein into Lewy
bodies extend to other regionsof the brain and the peripheral
nervous system, which damagesand disrupts various
(05:19):
neurotransmitter systems andneural pathways, leading to a
wide range of non-motor symptoms.
So let's look at some of the keycauses of non-motor symptoms,
starting with dopaminedeficiency.
Now, besides its role inmovement, dopamine also plays a
part in our mood, motivation andrecognition, and cognition as
(05:41):
well.
Now, the loss ofdopamine-producing cells can
contribute to depression,anxiety and apathy.
Next up is neurotransmitterimbalance.
Parkinson's affects othercrucial neurotransmitters like
norepinephrine, which isinvolved in attention and blood
pressure, serotonin, which isinvolved in mood, sleep and
(06:01):
appetite, and acetylcholine,which is involved in memory and
learning.
Now, these disruptions inneurotransmitters contribute
significantly to non-motorsymptoms.
And then we have autonomicnervous system dysfunction.
Now, the autonomic nervoussystem controls involuntary
bodily functions like our bloodpressure, our heart rate,
(06:22):
digestion, bladder function andsweating.
Lewy body accumulation in thissystem can lead to issues like
constipation, orthostatichypertension, urinary problems
and one of my personal favoritesexcessive sweating.
Another key cause is Lewy bodyaccumulation in other areas of
the brain.
The spread of Lewy bodies toareas of the brain like the
(06:45):
limbic system involved in ouremotions, the cortex involved in
cognition and the olfactorybulb involved in sense of smell
directly contributes to symptomslike mood disorders, cognitive
impairment and loss of smell.
Okay, we've answered the secondpart of the question.
Why do we get them?
Now let's address the last partof the question.
(07:05):
How do non-motor symptomsaffect a person with Parkinson's
daily life, because ultimately,that's what we're most
concerned with.
Am I right Now if, living withParkinson's, you know that
non-motor symptoms can have aprofound impact on nearly every
aspect of a person's daily life?
Oftentimes they're invisible toother people.
(07:27):
Now let's look at some of thecategories of non-motor symptoms
that can have a huge impact onour daily life, and we'll be
going into detail on these injust a little bit, but here's an
overview.
We'll start off with cognitiveimpairment, memory and attention
, and then we'll talk about mooddisorders, depression, anxiety
and apathy, sleep disturbancesone of my favorites Insomnia,
(07:48):
rem sleep behavior disorder andthen we'll talk about some
sensory issues like loss ofsmell and pain, and then
autonomic dysfunction.
We'll talk about constipation,bladder issues and blood
pressure changes.
Others include fatigue, speechand swallowing changes.
Now it's interesting to notethat studies show that over 90%
(08:11):
of people with Parkinson'sexperience at least one
non-motor symptom.
Now, I guess the statisticchallenges the misconception
that Parkinson's is just amovement disorder.
All right, we've answered thequestion what are non-motor
symptoms, why do we get them andhow do they affect us?
Now let's switch gears and lookat the key non-motor symptom
(08:31):
areas in more detail, and let'slead it off with ones that I
have quite a bit of personalexperience with, and that is
mood and mind.
Now, there are a number ofnon-motor symptoms that fall
under this category, but let'sstart out with the two biggies
anxiety and depression.
So how prevalent are they?
Well, according to the articleDepression by the Parkinson's
(08:51):
Foundation, 50% of people withPD will experience some form of
depression and 40% of peoplewith Parkinson's will experience
an anxiety disorder.
I mean that's prettysubstantial.
People with Parkinson's willexperience an anxiety disorder.
I mean that's prettysubstantial.
Some studies suggest that athird of PD patients suffer from
an anxiety disorder at anygiven time.
Now, I know personally, I'vestruggled with anxiety and panic
(09:15):
attacks and I've used cognitivebehavioral therapy to finally
overcome experiencing panicattacks.
Now let's look at both of thesein a little bit more detail,
because they're so common andhave a significant impact on our
quality of life.
And let's start with depression.
Now, what is depression andwhat are the signs, so that we
might know if we areexperiencing depression?
(09:36):
Now let's look at some of thewarning signs or signals for
depression.
Now, I did want to mention thatit's important to recognize
that depression and Parkinson'sit's not simply a reaction to
the challenges of living with achronic illness.
It's often the directconsequence of the same
underlying brain changes thatcause the Parkinson's motor
symptoms.
(09:56):
The degeneration of dopamine,serotonin and norepinephrine
cells can directly impact moodregulation.
Okay, now let's look at some ofthe common signs of depression
in people with Parkinson's.
Now I want to start out withemotional and psychological
symptoms, and these includepersistent sadness or low mood,
(10:18):
and that can include a feelingof being down, tearful and empty
, and that can last for most ofa day, nearly every day, for at
least two weeks.
Loss of interest or pleasure, alack of enjoyment in activities
that you once enjoyed, likeyour hobbies, social
interactions with friends andfamily, feelings of guilt,
(10:39):
worthlessness or hopelessness,negative self-perception and a
bleak outlook of the future.
So, in a sense, you havenothing to look forward to.
Self-criticism, judgingyourself and focusing on your
personal failures, anxiety andworry, excessive nervousness,
fear, unease, which can manifestas panic attacks yes, I've been
(11:01):
in that position before, andit's really not a great place to
be.
Irritability or agitation,feeling easily frustrated or on
edge, thoughts of death orsuicide.
Now, this it's important tonote that this requires
immediate medical attention.
So if you know someone showingthis sign, get them the medical
and psychological help they needimmediately.
(11:22):
Then there are also physical andbehavioral symptoms.
There's changes in appetite orweight, so you can have either
significant weight loss orweight gain without trying, or
noticeable weight gain.
Sleep disturbances difficultyfalling or staying asleep or
sleeping too much or earlymorning awakening.
Is also common.
Fatigue and loss of energy andslowed thinking and
(11:45):
concentration, or a few others.
Now I don't know if you notice,but my guess is most, or every
time you go to see theneurologist or movement disorder
specialist.
If you notice, a lot of timesthey give you a questionnaire
and a number of questions relateto these symptoms of depression
and the scores from thesequestions help them identify if
(12:07):
you are experiencing depressionso that you can get the help you
need to treat the underlyingdepression.
Now I recently completed my41st study visit on the Michael
J Fox Foundation study and aspart of the non-motor symptom
questionnaires, there are anumber of questions relating to
depression and anxiety, sothey're trying to collect
additional data on prevalence ofdepression as a non-motor
symptom.
(12:28):
Now the good thing is thatdepression is treatable and
using a combination approach totreatment often works the best.
Treatment strategies caninclude medications like
antidepressants and some of themore common classes of
antidepressants includeselective serotonin reuptake
inhibitors, or SSRIs, andthey're often the first line of
(12:48):
treatment due to their generalfavorable side effect profile.
To their general favorable sideeffect profile.
Examples would include Zoloft,paxil, selexa and Lexapro.
Other classes of medicationsinclude serotonin norepinephrine
reuptake inhibitors, whichinclude Effexor and Cymbalta.
Other antidepressants includeWelbutrin and serotonin dopamine
(13:10):
uptake reinhibitor, whichincludes Remeron, which affects
serotonin, may also be used.
Now, I want to stress that thisinformation is for educational
purposes only and it's nottreatment advice.
Please discuss any issues orsigns of depression with your
healthcare professional so thatthey can develop a treatment
plan that is right for you.
Another treatment that is oftenused by itself or in combination
(13:32):
with other therapies ispsychotherapy or talk therapy.
Now this can include cognitivebehavioral therapy, which helps
you identify and change negativethought patterns and behaviors
that can contribute to anxietyand depression.
Now, this was a huge lifechanger for me.
I used cognitive behavioraltherapy to overcome anxiety,
panic attacks and depressionissues.
(13:53):
Cognitive behavioral therapy toovercome anxiety, panic attacks
and depression issues.
Now, if you want to learn moreabout cognitive behavioral
therapy, listen to my podcasttitled Parkinson's and Anxiety
how Cognitive Behavioral TherapyCan Take Back Control.
Now I share my personal journeywith how CBT was a life changer
for me.
Now, two additional types ofpsychotherapy include
interpersonal therapy, or IPT,which focuses on improving
(14:17):
relationships and socialinteractions, which can
positively impact your mood.
And then supportive counselinggives you a safe place to
discuss your feelings andchallenges and get emotional
support and guidance.
And finally, one of the toolsthat can be used to treat
depression and anxiety is, yes,your favorite of mine exercise
and physical activity.
(14:37):
Yes, I said it exercise.
Regular exercise has been shownto have positive effects on
mood and can alleviatedepressive symptoms.
Activities like tai chi,walking, swimming and yoga can
be beneficial.
So lace up those sneakers, gofor a walk and enjoy nature if
you're starting to feel down.
(14:57):
Now it's crucial for peoplewith Parkinson's and their
caregivers to be aware of thesigns of depression and mood
changes and share them with yourneurologist or your primary
care physician.
Early diagnosis and treatmentcan significantly improve your
quality of life.
Anxiety and depression often gohand in hand, and a number of
the symptoms of depression areoften related to underlying
(15:19):
anxiety.
Now let's look at apathy, whichis another common mood and mind
non-motor symptom.
Look, let's be honest.
We all feel apathy, probably atone point, especially when we
don't want to do something Like.
For me, it would be if someonesaid, let's go to the opera.
Now, I'm not against the opera,but it's just not for me, just
(15:40):
like shopping.
When my wife says, hey, let'sgo to the stores on the way home
, I get very apathetic and don'twant to do it.
Now she learned just to go onher own, which number one she
enjoys more, especially with mewhining about going shopping.
But what is apathy inParkinson's?
Apathy in Parkinson's ischaracterized by a lack of
(16:01):
motivation, interest andenthusiasm for activities that
you once enjoyed.
Now, in my case, if I suddenlystopped wanting to play guitar
or go fly fishing or said that Iwasn't interested, that would
be a sign of apathy.
Now, the shopping and operaexamples that I gave were things
that I just wasn't interestedin and so I was more like
(16:25):
getting out of doing it than itwas apathy.
So the difference is thatapathy is the reduction and is
often goal-oriented behaviorsand can show itself in several
ways, including reducedinitiative.
So you have difficulty startingtasks or activities without
being prompted to do so.
Loss of interest not onlywanting to participate in
(16:47):
hobbies and social events thatyou typically like to do, lack
of concern.
You're really indifferent topersonal matters or feelings of
others.
You just kind of I just don'tcare.
And then cognitive apathyReduced curiosity and interest
in learning new things.
Now, this would be somethingthat would be obvious about me,
because I love learning newthings.
(17:08):
So people with apathy mayappear passive, withdrawn and
less engaged in their dailyactivities.
They might spend more timedoing nothing or engaging in
passive activities like justwanting to watch TV.
Now, if you notice a friend orfamily member who is showing
these signs, it's important tolet your doctor know so that
they can develop a treatmentplan to help them.
(17:31):
All right, let's move on now toour next category of non-motor
symptoms, which is sleep andsenses, and let's lead it off
with common sleep disorders,because a large percentage 75%
of people with Parkinson'sexperience sleep-related
symptoms.
According to the article,studies show multiple sleep
problems are common in earlyParkinson's.
By the Parkinson's Foundation,sleep issues can have a huge
(17:54):
impact on the quality of life.
The article also states thatthis new study data shows that
the most common sleep issuesassociated with Parkinson's were
insomnia, which were 41% ofpatients that participated in
this study, followed by REMsleep behavior disorder, or RBD
and excessive daytime sleepinessboth 25% of the participants
(18:17):
that were involved in the studyand then restless leg syndrome
16% of the participants.
Now let's look at some of themost common sleep issues and
their causes and then give yousome strategies to manage them.
And let's start with sleepissues or disturbances that most
have experienced, and that wasthe number one sleep issue in
the Parkinson's Foundationarticle, and that is insomnia.
(18:40):
Insomnia means that you havedifficulty falling or staying
asleep.
Now, some causes of insomniaare Parkinson's-related brain
changes like affecting serotoninlevels, tremor pain, difficulty
turning in bed and vivid dreams, which can often be caused by
medication.
And then another is frequentnighttime urination, which can
(19:04):
cause sleep fragmentation, whereyou have to keep getting up
multiple times and where youhave periods of sleep that are
broken because you're getting upand trying to fall back to
sleep.
Also, anxiety and depressionand medication changes affect
the brain sleep-wake cycle.
All right, now that we knowwhat insomnia is and some common
causes, let's look at somestrategies to help you manage it
(19:25):
, and we'll start it off withoptimizing our PD medication.
Ask your doctor if adjustingmedication schedules can reduce
your nighttime motor symptoms,because sometimes you know you
have trouble turning over in bedor you have tremor that wakes
you up.
So if you can change yourmedication and timing, that may
be able to help.
Good sleep hygiene, which isnext on the list.
(19:47):
Good sleep hygiene includesestablishing a regular sleep
schedule.
Yes, even on weekends andvacation, you want to try to
make sure that you go to bed andget up at the same time.
You want to create a relaxingbedtime routine, so like a warm
bath, breathing, listening tocalming music.
But you should try to limityour computer, phone and tablet
(20:08):
use to at least a minimum of anhour before bed, because the
light can impact your sleep-wakecycle and then ensure your
bedroom is dark, quiet and cool.
You want to avoid caffeine andalcohol close to bedtime.
Now, I remember a time when Iwent to my friend Scott's house
a couple years ago and we wereplaying board games and we were
(20:30):
having some soda and snacks, andI didn't realize the soda what
I like to call high test becauseit contained a lot of caffeine.
So I drank probably five or sixglasses of soda and, needless
to say, it took me about threehours to finally fall asleep and
I kept waking up all night.
So to me that was a good lifelesson, chris don't drink a lot
(20:51):
of caffeine late in the day orbefore bed, unless I want to be
up all night.
And then you want to limitdaytime naps, especially long
ones, and you don't want to takea nap too late in the day,
because that's going to affectyour sleep as well.
Now I actually prefer and mybody seems to naturally do this
is the 20 to 30 minute powernaps.
I wake up feeling refreshed andnot groggy like after I would
(21:14):
take a long nap.
Other strategies includecognitive behavioral therapy,
which we've discussed.
Medications, and some of themshould be used with caution and
they need to be used undermedical supervision.
Sleep aids, short-term use ofmedications, but then there's
potential side effects dependingon how they're used, and you
(21:36):
should make sure that you reviewthose with your doctor as well.
Melatonin, which is a naturalhormone that regulates the
sleep-wake cycles, may behelpful for some people.
Now me personally.
I didn't really have muchsuccess with it.
Next up is REM sleep behaviordisorder, or RBD.
Next up is REM sleep behaviordisorder, or RBD.
(22:14):
Some common causes of RBDinclude neurodegeneration of the
brainstem, which specificallyaffects the areas that normally
paralyze your muscles during REMsleep, and there's a strong
association with alpha-synucleinclumping, which is highly
prevalent in PD and Lewy bodydementia.
Symptoms of REM sleep disorderinclude acting out your dreams
during REM sleep, which caninclude yelling, shouting,
punching, kicking and evenfalling out of bed.
Now, most of the time, theperson who's experiencing RBD
doesn't really notice thatthey're doing it, but their bed
partner will, and they need tobring it up for discussion.
(22:36):
Now some management strategiesfor REM sleep behavior disorder
include bedroom safety.
A lot of people need to pad thefloor around the bed in case
they fall out of bed whenthey're flanneling around.
And then you want to removesharp objects or sharp-edged
furniture from the bedside.
And one other thing is considerlowering the bed in case you
(22:58):
fall out.
Medications can sometimes beused under the supervision of
your doctor, and then melatoninis the first-line treatment and
can be effective in helping toreduce some RBD behaviors.
And then, finally, opencommunication with your bed
partner so they don't getinjured or traumatized if you're
yelling or flailing around inyour sleep.
(23:20):
Next up on the docket isrestless leg syndrome and
periodic limb movements of sleep.
Now, some common causes includeiron deficiency, which is more
common in restless leg, dopaminedysfunction, restless leg and
PLMS, which is the periodic limbmovements of sleep may include
issues with dopamine signaling.
(23:40):
Peripheral neuropathy, whichdiabetics may experience, is
nerve damage which contribute toRLS.
Symptoms of RLS include anirresistible urge to move the
legs, often accompanied byuncomfortable sensations like
tingling, crawling or achingthat worsen during rest and at
(24:00):
night and are relieved when youmove your legs.
Now PLMS is repetitive,involuntary limb movements,
usually your legs during sleep,which can disrupt sleep quality
for both the individual and thebed partner.
Now management strategiesinclude iron supplementation, so
if you're iron deficient theycould give you iron supplements.
(24:21):
Dopamine agonists medicationslike paramopexol and ropinerol,
often used to treat PD motorsymptoms, can be effective for
RLS.
An agapapentin or Neurotin canhelp with RLS, especially if
pain is involved, and legmassages may help provide some
relief for restless leg syndrome.
(24:41):
And then next up is one Iexperienced and have a love-hate
relationship with, and that'sexcessive daytime sleepiness.
The causes include fragmentednighttime sleep due to insomnia,
could be restless leg syndrome,rbd or just nocturia, where you
have frequent nighttimeurination, where you have to
(25:02):
keep getting up, and then justParkinson's itself.
The neurodegenerative processcan involve the regions in the
brain involved in wakefulness.
Medication side effects in somePD medications can cause
drowsiness and underlying sleepdisorders like sleep apnea can
also play a role.
Symptoms include feelingexcessively tired during the day
(25:26):
, difficulty staying awake andunintentional napping.
Some strategies for managingexcessive daytime sleepiness
Optimize nighttime sleep, ifpossible, by addressing insomnia
, rbd and restless leg, andreview medications with your
doctor.
Some of the medications mightbe a major contributor to your
(25:46):
daytime sleepiness.
And then you want to scheduleshort and what I like to call
power naps, which are the 20 to30 minute type, and then
maintaining a good, consistentsleep schedule, and then rule
out any other underlyingconditions like sleep apnea or
medical issues.
Now I've had problems withexcessive daytime sleepiness
when I was taking a dopamineagonist and I would be trying to
(26:08):
read something, or I was typingon the computer and I would nod
off and my finger wouldcontinue holding down the
computer key and I would, youknow, pop up 15 or 20 seconds
later and I would have aparagraph of the letter I or the
letter Q, whatever it wouldhappen to be, and then I'd have
to go back and delete all what Iwas typing.
And a few times when I wasreading, I almost hit myself in
(26:31):
the head with the iPad when Istarted to nod off.
And then there's also beentimes where I've been reading
and I've either dropped the bookin the middle of what I was
reading or sometimes, when I waslooking at the music for the
guitar, I would just nod off fora second and drop the pick.
So a change in medicationreally helped me out.
(26:51):
Now our final sleep issue iswhich I also love is sleep apnea
, and the most common beingobstructive sleep apnea, where
relaxation of the throat musclesleads to airway blockage, and
it can be worsened by obesityand certain anatomical features.
Symptoms include loud snoring,gasping for air during sleep and
(27:13):
pauses in breathing observed bya bed partner, and it can lead
to daytime sleepiness andmorning headaches.
Now let's look at somestrategies to manage sleep apnea
, and the first one is to use aCPAP machine, which is a
continuous positive airwaypressure machine, which is the
standard treatment for treatingespecially obstructive sleep
(27:35):
apnea, and it includes wearing amask that delivers a
pressurized air to keep yourairway open, and I personally
use a CPAP machine and I sleepso much better and I don't snore
, which I know my wife loves inoral appliances, and they can
help by repositioning your jawto maintain an open airway in
(27:57):
mild to moderate cases ofobstructive sleep apnea.
And then weight loss is anotherthing that you can do to help
improve your symptoms.
So as we wrap up sleep issues,it's important to keep your
doctor informed so they can helpyou get the sleep that you need
Now.
In my case, it took a referralto the sleep specialist to
really help me improve myquality and quantity of sleep,
(28:18):
because sleep is so important.
So make sure that you workthrough your sleep issues so
that you can get the proper restand that you need.
All right, let's look at anothercommon sleep and senses
non-motor symptom, which is lossof smell or nosemia.
Estimates vary across studies,but many suggest that over 90%
of people with PD have a reducedsense of smell.
(28:40):
Some studies even report theprevalence as high as 95% or
more.
Loss of smell is importantbecause it's often an early
symptom of Parkinson's and canprecede motor symptoms by years
and sometimes even decades.
Now it's considered a reliablemarker of the disease and is
even included as supportivecriteria in the clinical
(29:01):
diagnosis of Parkinson's.
Now, as we all know, the senseof smell plays a crucial role in
the perception of our taste andflavor.
Now, interestingly, our tastebuds on the tongue can only
really detect five basic tastessweet, sour, salty, bitter and
(29:22):
savory.
It's our olfactory system,which includes breathing and
smelling, that allows us todistinguish the complex and
nuanced flavors of differentfoods and drinks.
Loss of smell can affect ourquality of life because it can
reduce our flavor perception andit also decreases the enjoyment
of eating, which can have adirect impact on our appetite.
So if we can't smell the foodand it doesn't give us enjoyment
(29:46):
, we might say what do I reallywant to eat for anyway?
And it doesn't give usenjoyment, we might say what do
I really want to eat for anyway?
The problem with that, then, isit can lead to inadequate
nutrition and weight changes.
Now, recognizing this commonnon-motor symptom plays an
important role not only indiagnosis, but how it can impact
your quality of life throughdiet and nutrition.
(30:07):
All right, now let's look at thelast category of non-motor
symptoms that we'll be coveringin this podcast, and I like to
call these the body's innerworkings.
Now we'll look at threedifferent non-motor symptoms
autonomic dysfunction, bladderproblems and orthostatic
hypertension.
And let's start off withautonomic dysfunction.
Now you may be like me and arethinking what in the world is
autonomic dysfunction, which isalso known as autonomic
(30:30):
neuropathy.
Autonomic dysfunction occurswhen the autonomic nervous
system doesn't work properly.
Okay, that's great, but what'sthe autonomic nervous system?
Well, it's a network of nervesthat controls our involuntary
bodily functions, meaning onesthat you don't typically, you
don't have to think about Now.
These include heart rate, bloodpressure digestion, body
(30:53):
temperature regulation, sweating, bladder function and pupil
dilation.
Now, when the autonomic nervoussystem is damaged or
malfunctioned, these automatedprocesses can be disrupted.
Now I know, for example, I havetrouble with my body
temperature, especially when I'moutside and it gets really cold
(31:15):
out.
It never used to bother me.
Now, when it's really cold out,I often start to shake and
shiver and have trouble gettingwarm, and then I also sweat a
ton more than I did beforeParkinson's too.
So I have trouble with both hotand cold temperature.
So I'm aware of some of thechanges when you have autonomic
(31:37):
nervous system disruptions.
So how does autonomicdysfunction relate to non-motor
symptoms?
In Parkinson's?
Well, the same underlyingneurodegenerative process that
affects dopamine-producingneurons and leads to motor
symptoms also impacts otherareas of the brain involving the
autonomic nervous system.
And then you have theaccumulation of the
(31:59):
alpha-synuclein protein in Lewybodies is believed to contribute
to the damage of the cellswithin the autonomic nervous
system, damage of the cellswithin the autonomic nervous
system.
As a result, autonomicdysfunction is very a common
cause of many non-motor symptoms.
Now let's look at how theautonomic dysfunction can
manifest as various non-motorsymptoms in Parkinson's, and
(32:22):
we'll start off withcardiovascular issues like
orthostatic hypertension, andthat's where you have a
significant drop in your bloodpressure when you stand up and
that can cause dizziness andlightheadedness, and the issue
with that is it can cause you tofall and hurt yourself.
Gastrointestinal problems areanother area that are affected
(32:44):
by autonomic dysfunction and caninclude non-motor symptoms like
constipation, gastroparesis,which is delayed emptying of
your stomach, which can causenausea, vomiting or just a sense
of fullness, difficultyswallowing or dysphagia and
drooling, and that's fromexcessive saliva buildup.
(33:06):
Then you have urinary issues,which are another area that are
affected and include urinaryfrequency and urgency, nocturia,
which is the frequent nighttimeurination, urinary incontinence
.
And another area we often don'tthink about is thermoregulation
, which can include sweating andcan include excessive sweating,
(33:28):
which is hyperhidrosis,including nighttime sweats, and
then you can have hot and coldintolerance, so that's
difficulty regulating your bodytemperature in response to
environmental changes.
Now, if you have Parkinson's,how many of these non-motor
symptoms have you experienced.
Now.
(33:49):
I can personally attest toexperiencing several of these
during my Parkinson's journey.
So, as you can see, autonomicdysfunction can have a
significant impact on yourquality of life.
That's why it's so important tolet your doctor know if you're
experiencing any of thesenon-motor symptoms so they can
help you get the treatment youneed to manage them so that you
can live your best life.
All right, those are the threecategories of non-motor symptoms
(34:10):
that we wanted to discuss, andthat was mood and mind, sleep
and senses and the body's innerworkings.
Now let's touch on whyrecognizing non-motor symptoms
really matters in yourParkinson's journey.
First, letting your doctor knowabout your non-motor symptoms
can improve the management andtreatment of the symptoms,
because if they don't know aboutit, they can't treat it, and
(34:32):
sometimes non-motor symptoms canbe an early indicator of PD.
So by recognizing these earlysigns, that can lead to an
earlier diagnosis, which canthen lead to earlier treatment
intervention.
Also, it allows for targetedtreatment.
We often take dopaminergicmedications for our motor
symptoms because they'reeffective.
Non-motor symptoms, however, mayrequire a different approach
(34:55):
based on the specific non-motorsymptom.
For example, antidepressantswould be used for depression and
anxiety, sleep aids forinsomnia, and then there are
certain other medications thatare used for autonomic
dysfunction.
Finally, your doctor can makemedication adjustments, because
some PD medications canexacerbate non-motor symptoms.
(35:15):
And then another reason toinform your doctor is because of
the impact non-motor symptomscan have on your quality of life
, because sometimes non-motorsymptoms like fatigue, pain,
depression and anxiety andcognitive issues can be more
debilitating and impact yourquality of life more than the
motor symptoms that youexperience.
So when you let your doctorknow about these non-motor
(35:36):
symptoms, they can activelymanage them and help you live
your best life by helping youmaintain your independence.
Social interaction, if leftuntreated, can lead to social
isolation and then finally allowyou to enjoy your life by not
having motor symptoms affectyour daily life and activities.
So be your own advocate, alongwith your caregiver, to share
(35:56):
these hidden battles with yourdoctor, so that they can help
you manage the non-motorsymptoms and you can continue to
do the things that you enjoy.
So, as we wrap up our discussionon non-motor symptoms, one of
the first things I want toreinforce is to keep a positive
outlook, because non-motorsymptoms are challenging, but
they can be managed.
Now, as a call to action, Iwould encourage you to learn
(36:18):
more about your specificnon-motor symptoms so that you
can share them with yourcaregiver and your healthcare
professional to get thetreatment you need to live your
best life.
And I wanted to provide youwith some resources for learning
more about non-motor symptomsand their treatments.
Now I recommend visiting thefollowing websites the
Parkinson's Foundation atparkinsonsorg.
The Michael J Fox Foundation,and that's michaeljfoxorg.
(36:42):
The Davis Phinney Foundation atdavisfinney, and that's
p-h--N-N-E-Y foundationorg.
And in the American Parkinson'sDisease Association, theapdaorg
.
And then myparkinsonsteamcomoffers insights into seven
common non-motor symptoms, alongwith treatment options along
(37:11):
with treatment options.
And then, finally, frontiers inNeurology has a research
collection exploring, diagnosingand treating both motor and
non-motor symptoms.
So all those would be goodresources.
And that brings us to a close ofanother important conversation
here on the podcast.
Now we've journeyed beyond thetremor today, shining the light
on the hidden world of non-motorsymptoms and Parkinson's.
Now I hope this discussion hasempowered you to recognize the
(37:35):
importance of sharing thesenon-motor symptoms with your
healthcare provider and alsounderstand that you're not alone
in this journey.
Your journey with Parkinson'sis unique, and staying informed
and proactive is key tonavigating its complexities.
That's why I encourage you totake the next step in
understanding and support, andyou can do this by heading over
(37:55):
to libparkinsonscom.
There you can easily subscribeto the free monthly newsletter,
which is packed with the latestinsights, practical tips and
inspiring stories to help youlive your best life with
Parkinson's.
And while you're on the site,be sure to explore the free
resources and articles designedto give you actionable
information and support.
And then, next, if you're readyto take a more active role in
(38:18):
building a strong and effectivecare network, I highly recommend
getting your copy of ourBuilding your Care Team Resource
Guide and Workbook.
This comprehensive tool wasdesigned to empower you to
identify the right professionals, ask the right questions and
ultimately improve your qualityof care and support system.
You'll find a direct link tothis valuable resource at
(38:38):
libparkinsonscom.
And then, finally, if you findthe information and support we
provide through this podcast andwant to help us continue
bringing important conversations, consider supporting the
podcast through our Ko-fi page,which is ko-ficom slash
liveparkinsons.
And thanks again for joining ustoday.
Remember, understanding andaddressing all aspects of
(39:00):
Parkinson's, both visible andhidden, is essential for living
a more improved life.
So until next time, stayhealthy, stay strong and live
your best life with Parkinson's.
And again, thanks for joining.
I really appreciate it.
Hello and welcome to Live Parkinson's live an
exceptional life.
I'm your host, chrisKustenbader, and I've been
living an exceptional life withParkinson's for the past 15
years.
The mission of this podcast isto help as many people as
possible living with Parkinson'sto lead a great quality of life
.
Today's topic is Parkinson'shidden battles addressing
non-motor symptoms for betterliving.
Parkinson's can feel like aconstant fight, and while the
(00:33):
motor symptoms are often thefocus, the non-motor symptoms
can be just as debilitating.
But what if I told you thatunderstanding and addressing
these hidden battles from sleepto mood, to sensory changes
could unlock a significantimprovement in your daily life?
Join us as we explore how tocontrol our non-motor symptoms
(00:54):
and live a better life withParkinson's.
Now, one thing I've learnedliving with Parkinson's for 15
years is that each day can bringdifferent challenges Balance
issues, tremor, walking problems.
But in addition to these motorsymptoms, a number of non-motor
symptoms that I've experienced,including sleep issues, fatigue,
anxiety and cognitive changes,have all had a negative impact
(01:16):
on my quality of life.
So in this episode, I want toshare with you tips and
strategies I've learnedpersonally and from others on
dealing with the non-motorsymptoms to live your best life
with Parkinson's.
Now I'll also be sharing expertadvice on strategies to help
you manage your non-motorsymptoms.
Now, before we dive intotoday's episode, I want to
remind you that if you'relooking for expert advice on
(01:37):
building a strong Parkinson'scare team, check out my Building
your Parkinson's Care TeamResource Guide and Workbook, and
you can find it atliveparkinsonscom or on my Ko-fi
shop at ko-ficom slashliveparkinsons.
And if you'd like to supportthe podcast to help keep it
running, visit my Ko-fi page atko-ficom slash liveparkinsons.
And thank you for your support.
(02:00):
All right, let's take a look atwhat we'll be discussing in this
episode.
We're going to lead it off withdefining what non-motor
symptoms are and how they affectour quality of life.
Then we'll transition to thedifferent categories of motor
symptoms that you may experience.
Now remember Parkinson's isoften referred to as a boutique
disease, meaning, while a numberof symptoms are common between
everyone, each person willexperience a variety of symptoms
(02:22):
that may be different fromsomeone else, so everyone's
journey is going to be different.
Then it's time to look at eachcategory of non-motor symptoms
in detail and give you specific,actionable strategies to manage
each one as you live your bestlife with Parkinson's.
After this, we'll transitioninto why recognizing these
non-motor symptoms matter andthen close it out with resources
(02:43):
that you can use to manage yournon-motor symptoms.
Now let me ask you a questionwhat are your most bothersome
non-motor symptoms and how dothey affect you on a daily basis
?
Now I'd love to hear yourthoughts and you can either hit
the text me in the podcastdescription or drop me an email
at cacusty at liveparkinsonscom.
Or drop me an email at cacustyat liveparkinsonscom.
(03:04):
Now my top three, starting withnumber one, are sleep issues,
followed closely by cognitiveissues, memory and organizing,
and fatigue.
So what are non-motor symptoms,why do we get them and how do
they affect us?
All right, let's break down thequestion into different parts
and we'll start off with.
What are non-motor symptoms ofParkinson's?
(03:25):
Non-motor symptoms ofParkinson's encompass a wide
array of symptoms that do notprimarily affect your movement.
According to the articleParkinson's Disease by the
Cleveland Clinic, they statethat in years past, experts
believed non-motor symptoms wererisk factors for this disease
when seen before motor symptoms.
However, there is a growingamount of evidence that these
(03:51):
symptoms can appear in theearliest stages of this disease.
That means these symptoms mightbe warning signs that start
years or even decades beforemotor symptoms.
They note that non-motorsymptoms with potential warning
symptoms include autonomicnervous system symptoms those
are the ones that you don'tconsciously control and include
orthostatic hypertension or lowblood pressure when standing up,
(04:14):
constipation, urinaryincontinence and sexual
dysfunction, depression, loss ofsense of smell or anosmia,
sleep problems, including rapideye movement, behavior disorder,
restless leg syndrome and thentrouble thinking and focusing.
So it's important to note thatnon-motor symptoms can appear to
any stage of the disease, andsometimes even years before
(04:37):
motor symptoms are noticeable.
Now let's look at the secondpart of my question why do we
get motor symptoms?
Basically, the underlying causeof non-motor symptoms in
Parkinson's is the same as formotor symptoms it's the
degeneration and loss of nervecells in the brain.
Now it's not just thedopamine-producing neurons in
the substantia nigra of thebrain that are affected.
(04:59):
Now, when this area of thebrain begins to have
dopamine-producing neurons dieoff, motor symptoms of
Parkinson's can becomenoticeable.
The accumulation of a proteincalled alpha-synuclein into Lewy
bodies extend to other regionsof the brain and the peripheral
nervous system, which damagesand disrupts various
(05:19):
neurotransmitter systems andneural pathways, leading to a
wide range of non-motor symptoms.
So let's look at some of the keycauses of non-motor symptoms,
starting with dopaminedeficiency.
Now, besides its role inmovement, dopamine also plays a
part in our mood, motivation andrecognition, and cognition as
(05:41):
well.
Now, the loss ofdopamine-producing cells can
contribute to depression,anxiety and apathy.
Next up is neurotransmitterimbalance.
Parkinson's affects othercrucial neurotransmitters like
norepinephrine, which isinvolved in attention and blood
pressure, serotonin, which isinvolved in mood, sleep and
(06:01):
appetite, and acetylcholine,which is involved in memory and
learning.
Now, these disruptions inneurotransmitters contribute
significantly to non-motorsymptoms.
And then we have autonomicnervous system dysfunction.
Now, the autonomic nervoussystem controls involuntary
bodily functions like our bloodpressure, our heart rate,
(06:22):
digestion, bladder function andsweating.
Lewy body accumulation in thissystem can lead to issues like
constipation, orthostatichypertension, urinary problems
and one of my personal favoritesexcessive sweating.
Another key cause is Lewy bodyaccumulation in other areas of
the brain.
The spread of Lewy bodies toareas of the brain like the
(06:45):
limbic system involved in ouremotions, the cortex involved in
cognition and the olfactorybulb involved in sense of smell
directly contributes to symptomslike mood disorders, cognitive
impairment and loss of smell.
Okay, we've answered the secondpart of the question.
Why do we get them?
Now let's address the last partof the question.
(07:05):
How do non-motor symptomsaffect a person with Parkinson's
daily life, because ultimately,that's what we're most
concerned with.
Am I right Now if, living withParkinson's, you know that
non-motor symptoms can have aprofound impact on nearly every
aspect of a person's daily life?
Oftentimes they're invisible toother people.
(07:27):
Now let's look at some of thecategories of non-motor symptoms
that can have a huge impact onour daily life, and we'll be
going into detail on these injust a little bit, but here's an
overview.
We'll start off with cognitiveimpairment, memory and attention
, and then we'll talk about mooddisorders, depression, anxiety
and apathy, sleep disturbancesone of my favorites Insomnia,
(07:48):
rem sleep behavior disorder andthen we'll talk about some
sensory issues like loss ofsmell and pain, and then
autonomic dysfunction.
We'll talk about constipation,bladder issues and blood
pressure changes.
Others include fatigue, speechand swallowing changes.
Now it's interesting to notethat studies show that over 90%
(08:11):
of people with Parkinson'sexperience at least one
non-motor symptom.
Now, I guess the statisticchallenges the misconception
that Parkinson's is just amovement disorder.
All right, we've answered thequestion what are non-motor
symptoms, why do we get them andhow do they affect us?
Now let's switch gears and lookat the key non-motor symptom
(08:31):
areas in more detail, and let'slead it off with ones that I
have quite a bit of personalexperience with, and that is
mood and mind.
Now, there are a number ofnon-motor symptoms that fall
under this category, but let'sstart out with the two biggies
anxiety and depression.
So how prevalent are they?
Well, according to the articleDepression by the Parkinson's
(08:51):
Foundation, 50% of people withPD will experience some form of
depression and 40% of peoplewith Parkinson's will experience
an anxiety disorder.
I mean that's prettysubstantial.
People with Parkinson's willexperience an anxiety disorder.
I mean that's prettysubstantial.
Some studies suggest that athird of PD patients suffer from
an anxiety disorder at anygiven time.
Now, I know personally, I'vestruggled with anxiety and panic
(09:15):
attacks and I've used cognitivebehavioral therapy to finally
overcome experiencing panicattacks.
Now let's look at both of thesein a little bit more detail,
because they're so common andhave a significant impact on our
quality of life.
And let's start with depression.
Now, what is depression andwhat are the signs, so that we
might know if we areexperiencing depression?
(09:36):
Now let's look at some of thewarning signs or signals for
depression.
Now, I did want to mention thatit's important to recognize
that depression and Parkinson'sit's not simply a reaction to
the challenges of living with achronic illness.
It's often the directconsequence of the same
underlying brain changes thatcause the Parkinson's motor
symptoms.
(09:56):
The degeneration of dopamine,serotonin and norepinephrine
cells can directly impact moodregulation.
Okay, now let's look at some ofthe common signs of depression
in people with Parkinson's.
Now I want to start out withemotional and psychological
symptoms, and these includepersistent sadness or low mood,
(10:18):
and that can include a feelingof being down, tearful and empty
, and that can last for most ofa day, nearly every day, for at
least two weeks.
Loss of interest or pleasure, alack of enjoyment in activities
that you once enjoyed, likeyour hobbies, social
interactions with friends andfamily, feelings of guilt,
(10:39):
worthlessness or hopelessness,negative self-perception and a
bleak outlook of the future.
So, in a sense, you havenothing to look forward to.
Self-criticism, judgingyourself and focusing on your
personal failures, anxiety andworry, excessive nervousness,
fear, unease, which can manifestas panic attacks yes, I've been
(11:01):
in that position before, andit's really not a great place to
be.
Irritability or agitation,feeling easily frustrated or on
edge, thoughts of death orsuicide.
Now, this it's important tonote that this requires
immediate medical attention.
So if you know someone showingthis sign, get them the medical
and psychological help they needimmediately.
(11:22):
Then there are also physical andbehavioral symptoms.
There's changes in appetite orweight, so you can have either
significant weight loss orweight gain without trying, or
noticeable weight gain.
Sleep disturbances difficultyfalling or staying asleep or
sleeping too much or earlymorning awakening.
Is also common.
Fatigue and loss of energy andslowed thinking and
(11:45):
concentration, or a few others.
Now I don't know if you notice,but my guess is most, or every
time you go to see theneurologist or movement disorder
specialist.
If you notice, a lot of timesthey give you a questionnaire
and a number of questions relateto these symptoms of depression
and the scores from thesequestions help them identify if
(12:07):
you are experiencing depressionso that you can get the help you
need to treat the underlyingdepression.
Now I recently completed my41st study visit on the Michael
J Fox Foundation study and aspart of the non-motor symptom
questionnaires, there are anumber of questions relating to
depression and anxiety, sothey're trying to collect
additional data on prevalence ofdepression as a non-motor
symptom.
(12:28):
Now the good thing is thatdepression is treatable and
using a combination approach totreatment often works the best.
Treatment strategies caninclude medications like
antidepressants and some of themore common classes of
antidepressants includeselective serotonin reuptake
inhibitors, or SSRIs, andthey're often the first line of
(12:48):
treatment due to their generalfavorable side effect profile.
To their general favorable sideeffect profile.
Examples would include Zoloft,paxil, selexa and Lexapro.
Other classes of medicationsinclude serotonin norepinephrine
reuptake inhibitors, whichinclude Effexor and Cymbalta.
Other antidepressants includeWelbutrin and serotonin dopamine
(13:10):
uptake reinhibitor, whichincludes Remeron, which affects
serotonin, may also be used.
Now, I want to stress that thisinformation is for educational
purposes only and it's nottreatment advice.
Please discuss any issues orsigns of depression with your
healthcare professional so thatthey can develop a treatment
plan that is right for you.
Another treatment that is oftenused by itself or in combination
(13:32):
with other therapies ispsychotherapy or talk therapy.
Now this can include cognitivebehavioral therapy, which helps
you identify and change negativethought patterns and behaviors
that can contribute to anxietyand depression.
Now, this was a huge lifechanger for me.
I used cognitive behavioraltherapy to overcome anxiety,
panic attacks and depressionissues.
(13:53):
Cognitive behavioral therapy toovercome anxiety, panic attacks
and depression issues.
Now, if you want to learn moreabout cognitive behavioral
therapy, listen to my podcasttitled Parkinson's and Anxiety
how Cognitive Behavioral TherapyCan Take Back Control.
Now I share my personal journeywith how CBT was a life changer
for me.
Now, two additional types ofpsychotherapy include
interpersonal therapy, or IPT,which focuses on improving
(14:17):
relationships and socialinteractions, which can
positively impact your mood.
And then supportive counselinggives you a safe place to
discuss your feelings andchallenges and get emotional
support and guidance.
And finally, one of the toolsthat can be used to treat
depression and anxiety is, yes,your favorite of mine exercise
and physical activity.
(14:37):
Yes, I said it exercise.
Regular exercise has been shownto have positive effects on
mood and can alleviatedepressive symptoms.
Activities like tai chi,walking, swimming and yoga can
be beneficial.
So lace up those sneakers, gofor a walk and enjoy nature if
you're starting to feel down.
(14:57):
Now it's crucial for peoplewith Parkinson's and their
caregivers to be aware of thesigns of depression and mood
changes and share them with yourneurologist or your primary
care physician.
Early diagnosis and treatmentcan significantly improve your
quality of life.
Anxiety and depression often gohand in hand, and a number of
the symptoms of depression areoften related to underlying
(15:19):
anxiety.
Now let's look at apathy, whichis another common mood and mind
non-motor symptom.
Look, let's be honest.
We all feel apathy, probably atone point, especially when we
don't want to do something Like.
For me, it would be if someonesaid, let's go to the opera.
Now, I'm not against the opera,but it's just not for me, just
(15:40):
like shopping.
When my wife says, hey, let'sgo to the stores on the way home
, I get very apathetic and don'twant to do it.
Now she learned just to go onher own, which number one she
enjoys more, especially with mewhining about going shopping.
But what is apathy inParkinson's?
Apathy in Parkinson's ischaracterized by a lack of
(16:01):
motivation, interest andenthusiasm for activities that
you once enjoyed.
Now, in my case, if I suddenlystopped wanting to play guitar
or go fly fishing or said that Iwasn't interested, that would
be a sign of apathy.
Now, the shopping and operaexamples that I gave were things
that I just wasn't interestedin and so I was more like
(16:25):
getting out of doing it than itwas apathy.
So the difference is thatapathy is the reduction and is
often goal-oriented behaviorsand can show itself in several
ways, including reducedinitiative.
So you have difficulty startingtasks or activities without
being prompted to do so.
Loss of interest not onlywanting to participate in
(16:47):
hobbies and social events thatyou typically like to do, lack
of concern.
You're really indifferent topersonal matters or feelings of
others.
You just kind of I just don'tcare.
And then cognitive apathyReduced curiosity and interest
in learning new things.
Now, this would be somethingthat would be obvious about me,
because I love learning newthings.
(17:08):
So people with apathy mayappear passive, withdrawn and
less engaged in their dailyactivities.
They might spend more timedoing nothing or engaging in
passive activities like justwanting to watch TV.
Now, if you notice a friend orfamily member who is showing
these signs, it's important tolet your doctor know so that
they can develop a treatmentplan to help them.
(17:31):
All right, let's move on now toour next category of non-motor
symptoms, which is sleep andsenses, and let's lead it off
with common sleep disorders,because a large percentage 75%
of people with Parkinson'sexperience sleep-related
symptoms.
According to the article,studies show multiple sleep
problems are common in earlyParkinson's.
By the Parkinson's Foundation,sleep issues can have a huge
(17:54):
impact on the quality of life.
The article also states thatthis new study data shows that
the most common sleep issuesassociated with Parkinson's were
insomnia, which were 41% ofpatients that participated in
this study, followed by REMsleep behavior disorder, or RBD
and excessive daytime sleepinessboth 25% of the participants
(18:17):
that were involved in the studyand then restless leg syndrome
16% of the participants.
Now let's look at some of themost common sleep issues and
their causes and then give yousome strategies to manage them.
And let's start with sleepissues or disturbances that most
have experienced, and that wasthe number one sleep issue in
the Parkinson's Foundationarticle, and that is insomnia.
(18:40):
Insomnia means that you havedifficulty falling or staying
asleep.
Now, some causes of insomniaare Parkinson's-related brain
changes like affecting serotoninlevels, tremor pain, difficulty
turning in bed and vivid dreams, which can often be caused by
medication.
And then another is frequentnighttime urination, which can
(19:04):
cause sleep fragmentation, whereyou have to keep getting up
multiple times and where youhave periods of sleep that are
broken because you're getting upand trying to fall back to
sleep.
Also, anxiety and depressionand medication changes affect
the brain sleep-wake cycle.
All right, now that we knowwhat insomnia is and some common
causes, let's look at somestrategies to help you manage it
(19:25):
, and we'll start it off withoptimizing our PD medication.
Ask your doctor if adjustingmedication schedules can reduce
your nighttime motor symptoms,because sometimes you know you
have trouble turning over in bedor you have tremor that wakes
you up.
So if you can change yourmedication and timing, that may
be able to help.
Good sleep hygiene, which isnext on the list.
(19:47):
Good sleep hygiene includesestablishing a regular sleep
schedule.
Yes, even on weekends andvacation, you want to try to
make sure that you go to bed andget up at the same time.
You want to create a relaxingbedtime routine, so like a warm
bath, breathing, listening tocalming music.
But you should try to limityour computer, phone and tablet
(20:08):
use to at least a minimum of anhour before bed, because the
light can impact your sleep-wakecycle and then ensure your
bedroom is dark, quiet and cool.
You want to avoid caffeine andalcohol close to bedtime.
Now, I remember a time when Iwent to my friend Scott's house
a couple years ago and we wereplaying board games and we were
(20:30):
having some soda and snacks, andI didn't realize the soda what
I like to call high test becauseit contained a lot of caffeine.
So I drank probably five or sixglasses of soda and, needless
to say, it took me about threehours to finally fall asleep and
I kept waking up all night.
So to me that was a good lifelesson, chris don't drink a lot
(20:51):
of caffeine late in the day orbefore bed, unless I want to be
up all night.
And then you want to limitdaytime naps, especially long
ones, and you don't want to takea nap too late in the day,
because that's going to affectyour sleep as well.
Now I actually prefer and mybody seems to naturally do this
is the 20 to 30 minute powernaps.
I wake up feeling refreshed andnot groggy like after I would
(21:14):
take a long nap.
Other strategies includecognitive behavioral therapy,
which we've discussed.
Medications, and some of themshould be used with caution and
they need to be used undermedical supervision.
Sleep aids, short-term use ofmedications, but then there's
potential side effects dependingon how they're used, and you
(21:36):
should make sure that you reviewthose with your doctor as well.
Melatonin, which is a naturalhormone that regulates the
sleep-wake cycles, may behelpful for some people.
Now me personally.
I didn't really have muchsuccess with it.
Next up is REM sleep behaviordisorder, or RBD.
Next up is REM sleep behaviordisorder, or RBD.
(22:14):
Some common causes of RBDinclude neurodegeneration of the
brainstem, which specificallyaffects the areas that normally
paralyze your muscles during REMsleep, and there's a strong
association with alpha-synucleinclumping, which is highly
prevalent in PD and Lewy bodydementia.
Symptoms of REM sleep disorderinclude acting out your dreams
during REM sleep, which caninclude yelling, shouting,
punching, kicking and evenfalling out of bed.
Now, most of the time, theperson who's experiencing RBD
doesn't really notice thatthey're doing it, but their bed
partner will, and they need tobring it up for discussion.
(22:36):
Now some management strategiesfor REM sleep behavior disorder
include bedroom safety.
A lot of people need to pad thefloor around the bed in case
they fall out of bed whenthey're flanneling around.
And then you want to removesharp objects or sharp-edged
furniture from the bedside.
And one other thing is considerlowering the bed in case you
(22:58):
fall out.
Medications can sometimes beused under the supervision of
your doctor, and then melatoninis the first-line treatment and
can be effective in helping toreduce some RBD behaviors.
And then, finally, opencommunication with your bed
partner so they don't getinjured or traumatized if you're
yelling or flailing around inyour sleep.
(23:20):
Next up on the docket isrestless leg syndrome and
periodic limb movements of sleep.
Now, some common causes includeiron deficiency, which is more
common in restless leg, dopaminedysfunction, restless leg and
PLMS, which is the periodic limbmovements of sleep may include
issues with dopamine signaling.
(23:40):
Peripheral neuropathy, whichdiabetics may experience, is
nerve damage which contribute toRLS.
Symptoms of RLS include anirresistible urge to move the
legs, often accompanied byuncomfortable sensations like
tingling, crawling or achingthat worsen during rest and at
(24:00):
night and are relieved when youmove your legs.
Now PLMS is repetitive,involuntary limb movements,
usually your legs during sleep,which can disrupt sleep quality
for both the individual and thebed partner.
Now management strategiesinclude iron supplementation, so
if you're iron deficient theycould give you iron supplements.
(24:21):
Dopamine agonists medicationslike paramopexol and ropinerol,
often used to treat PD motorsymptoms, can be effective for
RLS.
An agapapentin or Neurotin canhelp with RLS, especially if
pain is involved, and legmassages may help provide some
relief for restless leg syndrome.
(24:41):
And then next up is one Iexperienced and have a love-hate
relationship with, and that'sexcessive daytime sleepiness.
The causes include fragmentednighttime sleep due to insomnia,
could be restless leg syndrome,rbd or just nocturia, where you
have frequent nighttimeurination, where you have to
(25:02):
keep getting up, and then justParkinson's itself.
The neurodegenerative processcan involve the regions in the
brain involved in wakefulness.
Medication side effects in somePD medications can cause
drowsiness and underlying sleepdisorders like sleep apnea can
also play a role.
Symptoms include feelingexcessively tired during the day
(25:26):
, difficulty staying awake andunintentional napping.
Some strategies for managingexcessive daytime sleepiness
Optimize nighttime sleep, ifpossible, by addressing insomnia
, rbd and restless leg, andreview medications with your
doctor.
Some of the medications mightbe a major contributor to your
(25:46):
daytime sleepiness.
And then you want to scheduleshort and what I like to call
power naps, which are the 20 to30 minute type, and then
maintaining a good, consistentsleep schedule, and then rule
out any other underlyingconditions like sleep apnea or
medical issues.
Now I've had problems withexcessive daytime sleepiness
when I was taking a dopamineagonist and I would be trying to
(26:08):
read something, or I was typingon the computer and I would nod
off and my finger wouldcontinue holding down the
computer key and I would, youknow, pop up 15 or 20 seconds
later and I would have aparagraph of the letter I or the
letter Q, whatever it wouldhappen to be, and then I'd have
to go back and delete all what Iwas typing.
And a few times when I wasreading, I almost hit myself in
(26:31):
the head with the iPad when Istarted to nod off.
And then there's also beentimes where I've been reading
and I've either dropped the bookin the middle of what I was
reading or sometimes, when I waslooking at the music for the
guitar, I would just nod off fora second and drop the pick.
So a change in medicationreally helped me out.
(26:51):
Now our final sleep issue iswhich I also love is sleep apnea
, and the most common beingobstructive sleep apnea, where
relaxation of the throat musclesleads to airway blockage, and
it can be worsened by obesityand certain anatomical features.
Symptoms include loud snoring,gasping for air during sleep and
(27:13):
pauses in breathing observed bya bed partner, and it can lead
to daytime sleepiness andmorning headaches.
Now let's look at somestrategies to manage sleep apnea
, and the first one is to use aCPAP machine, which is a
continuous positive airwaypressure machine, which is the
standard treatment for treatingespecially obstructive sleep
(27:35):
apnea, and it includes wearing amask that delivers a
pressurized air to keep yourairway open, and I personally
use a CPAP machine and I sleepso much better and I don't snore
, which I know my wife loves inoral appliances, and they can
help by repositioning your jawto maintain an open airway in
(27:57):
mild to moderate cases ofobstructive sleep apnea.
And then weight loss is anotherthing that you can do to help
improve your symptoms.
So as we wrap up sleep issues,it's important to keep your
doctor informed so they can helpyou get the sleep that you need
Now.
In my case, it took a referralto the sleep specialist to
really help me improve myquality and quantity of sleep,
(28:18):
because sleep is so important.
So make sure that you workthrough your sleep issues so
that you can get the proper restand that you need.
All right, let's look at anothercommon sleep and senses
non-motor symptom, which is lossof smell or nosemia.
Estimates vary across studies,but many suggest that over 90%
of people with PD have a reducedsense of smell.
(28:40):
Some studies even report theprevalence as high as 95% or
more.
Loss of smell is importantbecause it's often an early
symptom of Parkinson's and canprecede motor symptoms by years
and sometimes even decades.
Now it's considered a reliablemarker of the disease and is
even included as supportivecriteria in the clinical
(29:01):
diagnosis of Parkinson's.
Now, as we all know, the senseof smell plays a crucial role in
the perception of our taste andflavor.
Now, interestingly, our tastebuds on the tongue can only
really detect five basic tastessweet, sour, salty, bitter and
(29:22):
savory.
It's our olfactory system,which includes breathing and
smelling, that allows us todistinguish the complex and
nuanced flavors of differentfoods and drinks.
Loss of smell can affect ourquality of life because it can
reduce our flavor perception andit also decreases the enjoyment
of eating, which can have adirect impact on our appetite.
So if we can't smell the foodand it doesn't give us enjoyment
(29:46):
, we might say what do I reallywant to eat for anyway?
And it doesn't give usenjoyment, we might say what do
I really want to eat for anyway?
The problem with that, then, isit can lead to inadequate
nutrition and weight changes.
Now, recognizing this commonnon-motor symptom plays an
important role not only indiagnosis, but how it can impact
your quality of life throughdiet and nutrition.
(30:07):
All right, now let's look at thelast category of non-motor
symptoms that we'll be coveringin this podcast, and I like to
call these the body's innerworkings.
Now we'll look at threedifferent non-motor symptoms
autonomic dysfunction, bladderproblems and orthostatic
hypertension.
And let's start off withautonomic dysfunction.
Now you may be like me and arethinking what in the world is
autonomic dysfunction, which isalso known as autonomic
(30:30):
neuropathy.
Autonomic dysfunction occurswhen the autonomic nervous
system doesn't work properly.
Okay, that's great, but what'sthe autonomic nervous system?
Well, it's a network of nervesthat controls our involuntary
bodily functions, meaning onesthat you don't typically, you
don't have to think about Now.
These include heart rate, bloodpressure digestion, body
(30:53):
temperature regulation, sweating, bladder function and pupil
dilation.
Now, when the autonomic nervoussystem is damaged or
malfunctioned, these automatedprocesses can be disrupted.
Now I know, for example, I havetrouble with my body
temperature, especially when I'moutside and it gets really cold
(31:15):
out.
It never used to bother me.
Now, when it's really cold out,I often start to shake and
shiver and have trouble gettingwarm, and then I also sweat a
ton more than I did beforeParkinson's too.
So I have trouble with both hotand cold temperature.
So I'm aware of some of thechanges when you have autonomic
(31:37):
nervous system disruptions.
So how does autonomicdysfunction relate to non-motor
symptoms?
In Parkinson's?
Well, the same underlyingneurodegenerative process that
affects dopamine-producingneurons and leads to motor
symptoms also impacts otherareas of the brain involving the
autonomic nervous system.
And then you have theaccumulation of the
(31:59):
alpha-synuclein protein in Lewybodies is believed to contribute
to the damage of the cellswithin the autonomic nervous
system, damage of the cellswithin the autonomic nervous
system.
As a result, autonomicdysfunction is very a common
cause of many non-motor symptoms.
Now let's look at how theautonomic dysfunction can
manifest as various non-motorsymptoms in Parkinson's, and
(32:22):
we'll start off withcardiovascular issues like
orthostatic hypertension, andthat's where you have a
significant drop in your bloodpressure when you stand up and
that can cause dizziness andlightheadedness, and the issue
with that is it can cause you tofall and hurt yourself.
Gastrointestinal problems areanother area that are affected
(32:44):
by autonomic dysfunction and caninclude non-motor symptoms like
constipation, gastroparesis,which is delayed emptying of
your stomach, which can causenausea, vomiting or just a sense
of fullness, difficultyswallowing or dysphagia and
drooling, and that's fromexcessive saliva buildup.
(33:06):
Then you have urinary issues,which are another area that are
affected and include urinaryfrequency and urgency, nocturia,
which is the frequent nighttimeurination, urinary incontinence
.
And another area we often don'tthink about is thermoregulation
, which can include sweating andcan include excessive sweating,
(33:28):
which is hyperhidrosis,including nighttime sweats, and
then you can have hot and coldintolerance, so that's
difficulty regulating your bodytemperature in response to
environmental changes.
Now, if you have Parkinson's,how many of these non-motor
symptoms have you experienced.
Now.
(33:49):
I can personally attest toexperiencing several of these
during my Parkinson's journey.
So, as you can see, autonomicdysfunction can have a
significant impact on yourquality of life.
That's why it's so important tolet your doctor know if you're
experiencing any of thesenon-motor symptoms so they can
help you get the treatment youneed to manage them so that you
can live your best life.
All right, those are the threecategories of non-motor symptoms
(34:10):
that we wanted to discuss, andthat was mood and mind, sleep
and senses and the body's innerworkings.
Now let's touch on whyrecognizing non-motor symptoms
really matters in yourParkinson's journey.
First, letting your doctor knowabout your non-motor symptoms
can improve the management andtreatment of the symptoms,
because if they don't know aboutit, they can't treat it, and
(34:32):
sometimes non-motor symptoms canbe an early indicator of PD.
So by recognizing these earlysigns, that can lead to an
earlier diagnosis, which canthen lead to earlier treatment
intervention.
Also, it allows for targetedtreatment.
We often take dopaminergicmedications for our motor
symptoms because they'reeffective.
Non-motor symptoms, however, mayrequire a different approach
(34:55):
based on the specific non-motorsymptom.
For example, antidepressantswould be used for depression and
anxiety, sleep aids forinsomnia, and then there are
certain other medications thatare used for autonomic
dysfunction.
Finally, your doctor can makemedication adjustments, because
some PD medications canexacerbate non-motor symptoms.
(35:15):
And then another reason toinform your doctor is because of
the impact non-motor symptomscan have on your quality of life
, because sometimes non-motorsymptoms like fatigue, pain,
depression and anxiety andcognitive issues can be more
debilitating and impact yourquality of life more than the
motor symptoms that youexperience.
So when you let your doctorknow about these non-motor
(35:36):
symptoms, they can activelymanage them and help you live
your best life by helping youmaintain your independence.
Social interaction, if leftuntreated, can lead to social
isolation and then finally allowyou to enjoy your life by not
having motor symptoms affectyour daily life and activities.
So be your own advocate, alongwith your caregiver, to share
(35:56):
these hidden battles with yourdoctor, so that they can help
you manage the non-motorsymptoms and you can continue to
do the things that you enjoy.
So, as we wrap up our discussionon non-motor symptoms, one of
the first things I want toreinforce is to keep a positive
outlook, because non-motorsymptoms are challenging, but
they can be managed.
Now, as a call to action, Iwould encourage you to learn
(36:18):
more about your specificnon-motor symptoms so that you
can share them with yourcaregiver and your healthcare
professional to get thetreatment you need to live your
best life.
And I wanted to provide youwith some resources for learning
more about non-motor symptomsand their treatments.
Now I recommend visiting thefollowing websites the
Parkinson's Foundation atparkinsonsorg.
The Michael J Fox Foundation,and that's michaeljfoxorg.
(36:42):
The Davis Phinney Foundation atdavisfinney, and that's
p-h--N-N-E-Y foundationorg.
And in the American Parkinson'sDisease Association, theapdaorg
.
And then myparkinsonsteamcomoffers insights into seven
common non-motor symptoms, alongwith treatment options along
(37:11):
with treatment options.
And then, finally, frontiers inNeurology has a research
collection exploring, diagnosingand treating both motor and
non-motor symptoms.
So all those would be goodresources.
And that brings us to a close ofanother important conversation
here on the podcast.
Now we've journeyed beyond thetremor today, shining the light
on the hidden world of non-motorsymptoms and Parkinson's.
Now I hope this discussion hasempowered you to recognize the
(37:35):
importance of sharing thesenon-motor symptoms with your
healthcare provider and alsounderstand that you're not alone
in this journey.
Your journey with Parkinson'sis unique, and staying informed
and proactive is key tonavigating its complexities.
That's why I encourage you totake the next step in
understanding and support, andyou can do this by heading over
(37:55):
to libparkinsonscom.
There you can easily subscribeto the free monthly newsletter,
which is packed with the latestinsights, practical tips and
inspiring stories to help youlive your best life with
Parkinson's.
And while you're on the site,be sure to explore the free
resources and articles designedto give you actionable
information and support.
And then, next, if you're readyto take a more active role in
(38:18):
building a strong and effectivecare network, I highly recommend
getting your copy of ourBuilding your Care Team Resource
Guide and Workbook.
This comprehensive tool wasdesigned to empower you to
identify the right professionals, ask the right questions and
ultimately improve your qualityof care and support system.
You'll find a direct link tothis valuable resource at
(38:38):
libparkinsonscom.
And then, finally, if you findthe information and support we
provide through this podcast andwant to help us continue
bringing important conversations, consider supporting the
podcast through our Ko-fi page,which is ko-ficom slash
liveparkinsons.
And thanks again for joining ustoday.
Remember, understanding andaddressing all aspects of
(39:00):
Parkinson's, both visible andhidden, is essential for living
a more improved life.
So until next time, stayhealthy, stay strong and live
your best life with Parkinson's.
And again, thanks for joining.
I really appreciate it.
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