August 6, 2025 • 27 mins
The moment of diagnosis is challenging, but what comes next can be just as daunting: telling your family, friends, and colleagues. In this powerful episode of Live Parkinson's - Live an Exceptional Life, we provide a compassionate and practical roadmap for navigating the conversation about Parkinson's disease. We address the emotional weight of disclosure, offer actionable scripts for different social situations, and empower you to take control of your narrative.
This isn't about revealing a weakness; it's about building a powerful support system. Tune in to learn how to communicate your diagnosis with confidence and grace, and turn a difficult moment into an opportunity for deeper connection.
In this episode, we cover:
- The emotional and psychological barriers that make disclosure so difficult.
- A tiered approach to talking about Parkinson's with your inner, middle, and outer social circles.
- Practical scripts and strategies for a planned conversation or an on-the-spot response.
- The power of sharing your story and the relief that comes with being open.
- How to gracefully handle questions like "You don't look like you have Parkinson's."
Want more resources to live an exceptional life with Parkinson's?
- Visit my website: Subscribe to the FREE Monthly Newsletter at Liveparkinsons.com.
- Get Free Resources: Improve your quality of life today by signing up for our free monthly newsletter. You'll get access to my 9 balance exercises for improving balance with Parkinson's and the free medication and symptom tracker.
- Support our Mission: This podcast and my mission to help people with Parkinson's live a great quality of life is made possible by your support. If you'd like to contribute, please visit my Ko-fi page: ko-fi.com/liveparkinsons. Every donation helps!
Hashtags: #Parkinsons #ParkinsonsDisease #PD #LivingWithParkinsons #ParkinsonsAwareness #ParkinsonsSupport #Diagnosis #Disclosure #ParkinsonsCommunity #ChronicIllness #Neurology #LiveExceptional #CopingSkills #ParkinsonsLife
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.
Disclosure: I discuss and promote products in this podcast that pay me a small commission at no cost to you. I use the commissions to help support this podcast and my website Liveparkinsons.com. I make you aware of any affiliate links by adding AFFLIATE Link right beside the link. Thank you for supporting this podcast.
To help support the podcast please visit me on my Ko-fi page and buy a cup of coffee if you feel that I am providing information that is relevant and actionable to help you live a better quality of life.
Please visit me at Liveparkinsons.com
Get my book - Spectacular Life - 4 Essential Strategies for Living with Parkinson's - My Journey to Happiness
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Hello, welcome to Live Parkinson's.
Live an Exceptional Life, thepodcast whose mission it is to
help people with Parkinson'slead a great quality of life.
I'm your host, chrisKustenbader, and I've been
(00:21):
living with Parkinson's for 15years Now.
Today we're talking about atopic that many of us face, and
it often feels more dauntingthan the diagnosis itself.
How do you tell people you haveParkinson's?
The tremor in your hand mightbe a physical symptom, but that
knot in your stomach when youthink about that conversation
well, that, my friends, is auniversal struggle.
(00:42):
You're definitely not alone infeeling this way.
So let's talk about it.
Let's create a game plan as asports analogy, to help navigate
these difficult conversationswith confidence and grace.
How, let's take a moment toacknowledge the why.
(01:04):
Why is it so hard for us to tellpeople that we have Parkinson's
?
Well, first of all, for many ofus, it's all about the loss of
control.
A Parkinson's diagnosis oftentakes a lot of that away, and
telling someone else also feelslike another piece of
information that you can nolonger keep to yourself.
Second, there's also the fearof being seen differently.
(01:27):
We may feel we're being judgedor, worse yet, pitied the
natural fear we all or most ofus anyway experience.
Now we worry that most peoplewill begin to define us by our
disease rather than who we areas a person.
Now I want to be very clear here.
There is no right or wrongtimeline for disclosing that you
(01:47):
have Parkinson's.
It's a very personal choice.
Some people share their newsimmediately with everyone they
know.
They post it on their socialmedia, they tell their co
workers, they get theirdiagnosis out there.
Others might wait months, evenyears, and will only tell a
select few of their closefriends.
The key is to be ready and doit on your own terms Because,
(02:10):
remember, this is your life andyour story and you get to decide
how and when it's told.
So let's take a step back,gather our thoughts and put
together a plan of practicalsteps for how we want to share
our diagnosis and with who wewant to share our diagnosis with
.
So how do we even begin todecide who we want to tell and
(02:31):
what we want to say?
Because, after all, there is alevel of trust involved when
we're telling somebody elseabout our diagnosis.
So if you only want a smallnumber of family and friends to
know initially, you trust thatthey will honor your word and
not run around telling everyoneelse.
Now, one of the ways that youcan approach telling others
about your diagnosis is using atiered approach.
(02:51):
Think of it like this have youever thrown a rock into the
water?
What happens?
Well, you get a ripple effect.
It starts with one small ringin the middle and then, next
thing you know, as it expands,you have these bigger ripples as
the ring moves farther outward.
So our plan is going to besimilar, and it starts with the
(03:12):
people closest to you and thenit's going to move outward.
So first we're going to startwith our inner circle.
Now this includes your spouse,your partner, your children and
your closest friends yourpartner, your children and your
closest friends.
So these are going to be thepeople who likely noticed
changes in your movement andmaybe some other changes, before
anyone else did.
(03:32):
In fact, they may not besurprised when you tell them
because they may have noticed atremor, that you had some
difficulty walking, or you hadsome other noticeable signs
walking, or you had some othernoticeable signs, but still,
they need to hear it from you.
They may have been worriedabout you and they're there to
offer your support.
So maybe they didn't sayanything, but they noticed these
(03:53):
changes and they're glad whenyou tell them that you were
finally diagnosed and they'rethere to support you any step of
the way.
Now it's okay to say, hey, I'mscared because I don't know
what's's going to happen and Idon't have all the answers, but
I need you on my team Now.
Remember that by telling yourinner circle, you're inviting
them to be part of yourParkinson's journey, and that's
(04:15):
a powerful thing.
Now, I'm always curious, so Iwanted to see if there was any
research or data about whenpeople with Parkinson's disclose
their diagnosis.
Search or data about whenpeople with Parkinson's disclose
their diagnosis, and what Ifound was, while there isn't a
single large-scale recent studythat provides a statistical
breakdown of when people withParkinson's reveal their
diagnosis, there were somestudies and articles that had
(04:37):
some valuable insights, and Iwanted to share those with you.
Now there was a 2006 studypublished in Neurology that
surveyed 101 patients withParkinson's, and they found that
90% disclosed early to familyand friends.
So this suggests that for mostpeople, their inner circle is
the first group to be told.
Now, patients who delayeddisclosure were more likely to
(05:00):
be male, younger and employedmore likely to be male, younger
and employed.
So this points to a specificdemographic of people that may
face different pressures orconcerns regarding their
professional life.
Now, the main concerns aboutdisclosure were fear of
(05:21):
reflecting negatively onthemselves and fear of upsetting
others.
Now, numerous articles andpatient accounts provided some
insights about the timing andreasons for the disclosure.
Now, one that struck me on apersonal level because this
happened in my case is what theycall the elephant in the room.
Now, a number of accountsmentioned that family members or
close friends may have alreadysuspected something was wrong
(05:41):
before the person disclosedtheir diagnosis, hence
identifying and verifying theelephant in the room.
Now the article suggests that,at least for the inner circle,
the disclosures may confirm asuspicion rather than come as a
complete shock.
All right, now let's take aclose look at the next ripple in
our tier after the inner circle, and that group is your middle
(06:03):
circle.
Now, this would be yourextended family, which might
include your aunts, uncles,cousins, third cousin twice
removed, just kidding on thatone close co-workers and trusted
neighbors.
So if you don't want the wholeneighborhood to know, then don't
tell the neighbor who likes torun around telling everybody the
latest news and gossip.
Now the conversation with thisgroup can be less detailed.
(06:26):
It may be more casual.
Now a good little script to haveready might go something like
this I want to let you know I'vebeen diagnosed with Parkinson's
.
I'm doing well and I'm managingit, but you might notice some
changes like tremor from time totime.
This type of approach setsboundaries while, at the same
time, keeping them informed.
It also gives you a way toaddress a potential symptom like
tremor before it becomes asource.
(06:46):
This type of approach setsboundaries while at the same
time, keeping them informed.
It also gives you a way toaddress a potential symptom like
tremor before it becomes asource of curiosity or gossip.
Now, in my particular case, Ihad a sales position and when I
was working, I had to dopresentations in front of team
members, at team meetings andfor the offices that I called on
.
Now I used a little script likethis I shared with everyone,
(07:06):
because I had to tell them I hada tremor, because it was very
noticeable and I didn't wanteveryone thinking I was very
nervous or wasn't confident inthe information I was sharing.
Now, interestingly, in theneurology study that I
referenced earlier found thatmore than 25% of people waited
at least one year to disclose atwork.
So this highlights asignificant difference in the
(07:27):
timeline for professional versuspersonal disclosure.
Now also, the middle circledisclosures often happen
reactively, when your symptomsbecome visible or questions are
asked like is anything wrong oris everything okay?
Anything I can help with?
Now?
Some of the barriers cited inthe articles I read about
(07:48):
disclosing to the middle circleincluded fear of stigma or pity.
Now people worried that theywould be treated differently or
seen as less capable.
And then next was uncertaintyabout reactions.
Unlike the inner circle, middlecircle people may not offer
unconditional support.
And then it was a desire tomaintain normalcy.
Many people cited that theywanted to avoid being a topic of
(08:11):
conversation or changing socialdynamics, for instance, being
excluded from going to lunchtogether or getting invited to
the after work party.
Finally, and this is animportant one, professional
concerns.
For co-workers disclosurescould raise concerns or fears
about job security, promotionsor being perceived as a
(08:31):
liability.
Now I was very fortunate when Iwas working that my immediate
manager, as well as the entiremanagement group and HR, were
very supportive and were therethroughout the entire process to
support me.
My manager could relate becausehe had some sons with some
health issues that he needed tobalance when he was working.
But that's not the caseeverywhere.
(08:52):
So it's understandable whypeople may hold back on
disclosing.
Now, some of the factors thatinfluence disclosure timing to
the middle group includedsymptom visibility, and that
could include whether you hadtremors or gait changes.
That often forced theconversation, and that was true
in my case.
Emotional readiness People waituntil they feel confident enough
(09:13):
to manage others' reactions.
And then next is therelationship quality.
Disclosure is more likely whentrust and empathy are already
present.
And then, finally, supportneeds when logistical or support
needs become necessary,disclosure tends to follow.
So maybe you need specialassistance or arrangements at
work because of your motorsymptoms.
(09:34):
Then telling the middle circlebecomes necessary.
And then, finally, let's look atthe last group, the outer
circle.
Now, this is for acquaintances,casual friends and your broader
professional network.
Here you don't owe everyone afull explanation.
Now, for this group, a brief,clear.
Your broader professionalnetwork.
Here you don't owe everyone afull explanation.
Now, for this group, a brief,clear statement is often enough.
For example, if someone asksyou about a tremor, you can
(09:56):
simply say it's a symptom of ahealth condition I have, but I'm
managing it well, and you cankeep it as simple as that Now,
remember, you're in control ofall the information you share
and you can give as little asyou feel comfortable with, or
you can give as much as you feelcomfortable with, and it's okay
for you to set those boundariesNow.
Before we move on to the nextsegment, I wanted to share two
(10:18):
additional factors that caninfluence the timing of
disclosing your diagnosis, andthe first is your age and
employment status.
Younger working individuals maybe more hesitant to disclose
due to fears about job securityor professional stigma.
And secondly, social support.
The desire for support fromfriends and family is a major
motivator for early disclosureof your diagnosis Now, on the
(10:41):
other hand, the fear of losingthat support or being pitied can
cause a person to delay tellinganyone.
All right, now let's switchgears and talk about the most
actionable part of ourdiscussion.
Let's focus now on the how totell people that you've been
diagnosed with Parkinson's, andlet's start with our inner
circle Now.
I recommend the preparedapproach Now.
(11:03):
This isn't a conversation youwant to have on the fly.
I recommend scheduling sometime to talk so your family and
close friends aren't distractedby other things and so that they
fully comprehend what you'vejust told them.
So you want to find a quiet,comfortable place where you
won't be interrupted by thephone calls and text.
Now here's an example you canuse to break the ice.
So start off by saying I havesomething important to share
(11:26):
with you.
Now be prepared for anemotional reaction from them and
from yourself.
Now it's okay, even if they saymen, don't cry.
It's okay to feel overwhelmed.
Having some informationresources on hand, like a link
to one of the Parkinson'sfoundations, like the Michael J
Fox Foundation, the DavisPhinney Foundation and the
(11:47):
Parkinson's Foundation, to givethem where they can go and get
some information on themselves,is a great way for them to learn
and understand about thejourney that you're on and then
also that they can help you livewell with your Parkinson's.
So this way, if they want toget more information about
Parkinson's after your meeting,they have some trusted resources
(12:08):
to go to.
So let's move on now to themiddle and outer circle
questions.
Now for those, we need anon-the-fly approach.
This is for when someone asksyou a direct question like why
is your hand shaking?
So the best strategy here is asimple, confident statement like
I have Parkinson's, but it'snothing to worry about.
I'm doing great.
(12:29):
Now, one of my friends was anair traffic controller for
almost 30 years Now, towards theend of his career and before he
was diagnosed, his hand wouldshake and he couldn't figure out
why.
Then one day one of hisco-workers asked him why are you
so nervous?
Why is your hand shaking?
After all, you're great at whatyou do and you've been doing
this for so long.
(12:49):
His response was I don't know.
And then shortly thereafter hewas diagnosed with Parkinson's
and put on medication to controlhis motor symptoms.
And then, because he was onParkinson's medication, he had
to retire due to the regulations.
Now he said his co-workersunderstood then that it wasn't
nervousness but trauma fromParkinson's.
(13:11):
Now the reason I wanted to sharethis is because sometimes the
symptoms you experience givesigns to others that you have
something going on, and thatmakes the discussions easier.
So when you give a short,confident answer to their
questions, this immediatelytakes the power away from their
questions and puts it back intoyour hands.
Now you're not making an excuse.
(13:31):
You're simply stating a factwith confidence.
Now let's address one that mostall of us have heard, and it's
a crucial one addressing thewhat can I do question.
Now, people want to help andthey often don't know how, be
ready with an answer.
It could be something as simpleas you know just continue to be
(13:51):
my friend, or I'd love it if wecould go for a walk once or
twice a week.
This gives them a clear,actionable way to support you
without creating more work orstress for you, and it's a great
opportunity to shape yoursupport system.
Now I wanted to address probablythe most common statement I get
, and I've heard others withParkinson's get the same
(14:11):
question.
So it's almost like a rite ofpassage, and that is well.
You don't look like you haveParkinson's.
Now, when you get thisstatement, your response depends
entirely on your personality,your mood and your relationship
with the person making thestatement.
Now, I always like to keep apositive attitude and I like to
joke around and kid, so I mightrespond with something like well
(14:34):
, I guess there goes my shot atbeing the national Parkinson's
spokesmodel.
But let's give you somespecific ways to address this
and I'll break it down intocategories Now.
The first is the simple, directand educational approach.
Now, this is a great option formiddle circle people,
acquaintances, who are generallycurious but uninformed.
It educates them withoutgetting into a long emotional
(14:56):
conversation.
So here's some of the responsesthat you can consider.
That's because many of mysymptoms are invisible.
Parkinson's is more than just atremor and it affects my
balance, my sleep and energylevels.
Next, you could say thank you.
That's a nice thing to hear.
The truth is, I work reallyhard with medication, exercise
(15:17):
and therapy to keep my symptomsfrom progressing, and then
finally try.
Parkinson's is different foreveryone.
Just because my symptoms aren'tas visible today doesn't mean
they aren't there.
Now, here's why these work.
It helps clarify themisconception that Parkinson's
is only about visible tremors,and it also sets boundaries by
not inviting follow-up questionsabout your health history.
(15:40):
The second approach is myfavorite because it fits my
personality, and that's thehumorous, lighthearted approach.
Now, if you're in a good moodand you want to keep the
conversation light, a humorousresponse can be a great way to
handle it with this type ofsituation.
Now, this works best withpeople you know well enough to
share a laugh with, so try thesefor those occasions.
(16:01):
Oh, you should see me on a badday, or well, I'm trying to
define what Parkinson's lookslike, and my doctor thinks so,
so I'll pass along yourprofessional opinion.
Now here's why a lightheartedapproach works.
Humor can be a powerful tool fordiffusing awkwardness and
taking the sting out of apotentially offensive comment.
(16:22):
It shows you're in control andnot taking the comment
personally.
And then next is the gracefuland curt approach.
So for outer circle people andanyone who makes you feel
uncomfortable, you can keep itshort and sweet.
You don't owe anyone a detailedexplanation.
So try using thank you,followed by a quick change of
(16:44):
subject or.
I appreciate that and looks canbe deceiving.
Now why this works.
It's polite but firm.
It acknowledges that they'recomments without validating the
underlying assumption, and italso signals that you're not
open to further discussion onthe topic.
Now, finally, the I'm offendedapproach.
Sometimes the comments can feeldeeply invalidating, as if your
(17:10):
daily struggles are beingminimized.
So if you feel offended, it'sokay to address that directly,
especially if the person is afriend and you want to educate
them.
So try these responses.
I know you mean that as acompliment, but it actually
discounts all the work that I doevery day to manage my symptoms
.
Parkinson's is a full-time job,or A comment is a little tough
(17:32):
for me to hear, because there isso much more to this disease
than what you can see.
Now why this works.
Now this is a more vulnerableapproach and it can be
incredibly effective ateducating a friend and
strengthening your relationship.
It tells them how their wordsimpact you, which can lead to
more mindful conversations inthe future.
Now remember these approachesare just your toolbox.
(17:54):
Now remember, these approachesare just your toolbox.
There's no right way to respond, and the best response is the
one that makes you feel the mostempowered and comfortable in
that particular moment.
Now, also keep in mind that theperson making the comment is
usually not malicious, butsimply uninformed about the
hidden symptoms of Parkinson's.
All right, now we've coveredthe what, when and how, but it
(18:18):
also helps to hear from someoneelse who has walked this path.
So I want to share with you myown personal Parkinson's
disclosure journey.
Now I want to give you a littlebackground to help set it up.
And so before my diagnosis, Iwas experiencing tremor or
shaking on my left hand.
That's really what started meon my journey to find a doctor
to figure out what was wrong.
Now, initially, I was onvacation with my wife at Deep
(18:39):
Creek Lake in Western Maryland.
Now my wife and I had got backfrom a walk and she decided to
run to the store to pick up afew things.
So my teenage kids were alongand we were hanging out and then
all of a sudden my left handstarted shaking and I couldn't
get it to stop.
So my kids called my wife in apanic and said dad's hand is
shaking, something's wrong.
So my wife came home and saidwe're going to the emergency
(19:02):
room.
I said I'm not going to theemergency room, I'm fine.
So after a few back and forthI'm sitting in the emergency
room and the doctor comes in andexamines me and said well, I
can't find anything wrong, soit's probably stress.
So I'm thinking to myselfstress, I'm on vacation.
But I thanked the doctor andwent back and my hand stopped
(19:25):
shaking a little while later.
And then when I returned home Imade an appointment with the
neurologist because my hand wasstill shaking and he ran a
number of tests over the courseof a couple weeks and during
that time I also starteddragging my left leg when I
walked.
And after the series of testshe finally said I believe you
(19:46):
have Parkinson's.
And then he recommended I go tothe University of Maryland
Neurology to see a movementdisorder specialist, because he
said Parkinson's wasn't hisspecialty.
And he went to University ofMaryland Medical School and said
they had a great program andsaid that I really think that
you should get down there justto confirm the diagnosis, which
I did.
And they confirmed my diagnosis.
(20:07):
So I wanted to give you thatquick overview so it gives you a
better understanding of how Iapproach telling each tier level
.
And let's start with my innercircle of family and close
friends.
So we went home and told mykids and they said I figured you
had something, because they sawmy physical symptoms on a daily
basis.
And they asked me somequestions like are you going to
(20:29):
die or how long does it take toget really bad?
You know those type ofquestions.
So I answered their questionsand they felt more comfortable.
And then I told my parents andmy brother and his family and
again they said they weren'tsurprised because they also saw
the physical symptoms.
I would go to our cabin in themountains with my brother and
his family and and my hand wouldbe shaken and he'd always say
(20:53):
would you stop shaking your hand?
It's driving me crazy.
And I'd say, well, I'm trying.
And then they both said youknow, we'll support you in
whatever way you need.
And then my best friend Scottand his wife Lisa.
We went to lunch with Mary andmyself and we told them and he
said I knew something was wrong,but he wasn't real familiar
(21:14):
with Parkinson's.
So I filled him in on whatParkinson's was and how it
progresses.
He said hey, whatever help youneed, we're there for you.
I mean, we've been friends for50 years and that was great to
hear.
So it was great knowing that Ihad all the support I needed
from my inner circle.
Now the next step was to tellthe middle circle no-transcript.
(22:03):
Look, I'll do whatever's neededto be done in order to help you
.
You know, continue to work foras long as you can.
Now he understood because, as Imentioned earlier, he has two
special needs children at homethat need a care.
Now you may be thinking didn'tyour manager notice your tremor?
Well, actually no, because helives three hours away from me
and we'd get together onride-alongs when he wanted to do
(22:25):
a ride-along in my particularterritory.
So we didn't see each other ona daily basis.
But when we finally gottogether, that's when I
disclosed my diagnosis.
When we finally got together,that's when I disclosed my
diagnosis and then, after a fewweeks, my manager and I told my
manager and his manager.
And then we had a team meetingup in Boston and it was a
three-day meeting then so myteammates could notice that I
(22:48):
had some tremor and that I wasstill controlling it with
medication.
So during a dinner meeting thatwe had one night, people were
inquisitive and I said look, Ihave Parkinson's, I'm doing well
.
And I noticed that most of youprobably noticed that my hand
was shaking.
I said I'm doing fine and I'mgoing to continue to work as
(23:09):
long as I could.
And they were all verysupportive.
They would check in on meweekly to see how I was doing.
And then finally, the outercircle.
So by the time I told my innerand my middle circle people I
was very confident and I reallydidn't have any problem telling
someone I had Parkinson's.
You know, I could be presentingat a lunch and learn, and the
office staff could see my handsshaking and really to break the
(23:31):
ice, I'd start up by saying no,I'm not nervous, I have
Parkinson's.
And then they would ask me somequestions and ask me how I was
doing and they were verysupportive as well and ask if
there was anything they can do.
So in my personal case, I foundthat when I was talking to all
three circles that everyone wasvery supportive and willing to
help me if I needed it.
They all showed genuine concern.
(23:54):
Now I found that when I'm openand upfront about my Parkinson's
journey with people, it reallyhelps take away the thoughts
that they may be having likewhat's wrong with that guy?
He must be really nervous, orwhy is he walking funny like
that?
There's got to be somethingwrong with him.
So when I'm proactive, itreally helps break the tension
that people may feel.
Now that's my personal story ofhow I told each group you have
(24:18):
to do what's best for you onyour own Parkinson's journey and
decide who and when you'regoing to tell others about your
diagnosis.
Now for me to this day now Ihave no problem when I notice
somebody maybe staring, when I'mout in public or if I do a lot
of presentations and I teach acouple classes.
So people may ask and I'll justI'm up front and tell them look
(24:40):
, I have Parkinson's and I'mdoing well with medication and
exercise.
So thank you for your concernand I'll be happy to answer any
questions that you may have.
So telling someone you haveParkinson's really isn't about
pity, it's it's an invitation.
It's an invitation for them tobe part of your life and an
(25:01):
invitation to a deeperconnection with your family and
friends.
I'll remember you're the story,not the disease.
The script, the timing, thedetails all of it's up to you.
You're not just disclosing adiagnosis.
You're building a network ofsupport that's going to help you
live an exceptional life.
So my challenge to you this weekis to think about one person
(25:24):
that you want to have aconversation with.
Rehearse those words that wetalked about.
Take that step, and you mightbe surprised by the love and
outpouring that you're going toreceive from people.
I know that I did so.
Hopefully, this helped you as away to break the ice and
(25:46):
disclose your Parkinson'sdiagnosis and your Parkinson's
journey with your inner circle,your middle circle and,
eventually, your outer circle.
Now, I know it takes time and,again, this is a personal choice
.
You decide when and whereyou're going to tell people.
Now, please visit my website,liveparkinsonscom and subscribe
to the free monthly newsletter,and there's also a bunch of
(26:07):
other free resources on there,like my nine balance exercises
to help you improve your balancewith Parkinson's, and then
there's also a free medicationand symptom tracker, and there's
a number of articles that,hopefully, can provide some
information about Parkinson's aswell.
Now, if you feel that thecontent I provide is valuable,
(26:28):
please consider supporting theprogram at ko-ficom slash
liveparkinsons.
Again, thank you very much forlistening.
Again thank you very much forlistening and remember stay
healthy, stay strong and liveyour best life with Parkinson's.
Thanks again, have a great weekand I hope to see you soon.
Hello, welcome to Live Parkinson's.
Live an Exceptional Life, thepodcast whose mission it is to
help people with Parkinson'slead a great quality of life.
I'm your host, chrisKustenbader, and I've been
(00:21):
living with Parkinson's for 15years Now.
Today we're talking about atopic that many of us face, and
it often feels more dauntingthan the diagnosis itself.
How do you tell people you haveParkinson's?
The tremor in your hand mightbe a physical symptom, but that
knot in your stomach when youthink about that conversation
well, that, my friends, is auniversal struggle.
(00:42):
You're definitely not alone infeeling this way.
So let's talk about it.
Let's create a game plan as asports analogy, to help navigate
these difficult conversationswith confidence and grace.
How, let's take a moment toacknowledge the why.
(01:04):
Why is it so hard for us to tellpeople that we have Parkinson's
?
Well, first of all, for many ofus, it's all about the loss of
control.
A Parkinson's diagnosis oftentakes a lot of that away, and
telling someone else also feelslike another piece of
information that you can nolonger keep to yourself.
Second, there's also the fearof being seen differently.
(01:27):
We may feel we're being judgedor, worse yet, pitied the
natural fear we all or most ofus anyway experience.
Now we worry that most peoplewill begin to define us by our
disease rather than who we areas a person.
Now I want to be very clear here.
There is no right or wrongtimeline for disclosing that you
(01:47):
have Parkinson's.
It's a very personal choice.
Some people share their newsimmediately with everyone they
know.
They post it on their socialmedia, they tell their co
workers, they get theirdiagnosis out there.
Others might wait months, evenyears, and will only tell a
select few of their closefriends.
The key is to be ready and doit on your own terms Because,
(02:10):
remember, this is your life andyour story and you get to decide
how and when it's told.
So let's take a step back,gather our thoughts and put
together a plan of practicalsteps for how we want to share
our diagnosis and with who wewant to share our diagnosis with
.
So how do we even begin todecide who we want to tell and
(02:31):
what we want to say?
Because, after all, there is alevel of trust involved when
we're telling somebody elseabout our diagnosis.
So if you only want a smallnumber of family and friends to
know initially, you trust thatthey will honor your word and
not run around telling everyoneelse.
Now, one of the ways that youcan approach telling others
about your diagnosis is using atiered approach.
(02:51):
Think of it like this have youever thrown a rock into the
water?
What happens?
Well, you get a ripple effect.
It starts with one small ringin the middle and then, next
thing you know, as it expands,you have these bigger ripples as
the ring moves farther outward.
So our plan is going to besimilar, and it starts with the
(03:12):
people closest to you and thenit's going to move outward.
So first we're going to startwith our inner circle.
Now this includes your spouse,your partner, your children and
your closest friends yourpartner, your children and your
closest friends.
So these are going to be thepeople who likely noticed
changes in your movement andmaybe some other changes, before
anyone else did.
(03:32):
In fact, they may not besurprised when you tell them
because they may have noticed atremor, that you had some
difficulty walking, or you hadsome other noticeable signs
walking, or you had some othernoticeable signs, but still,
they need to hear it from you.
They may have been worriedabout you and they're there to
offer your support.
So maybe they didn't sayanything, but they noticed these
(03:53):
changes and they're glad whenyou tell them that you were
finally diagnosed and they'rethere to support you any step of
the way.
Now it's okay to say, hey, I'mscared because I don't know
what's's going to happen and Idon't have all the answers, but
I need you on my team Now.
Remember that by telling yourinner circle, you're inviting
them to be part of yourParkinson's journey, and that's
(04:15):
a powerful thing.
Now, I'm always curious, so Iwanted to see if there was any
research or data about whenpeople with Parkinson's disclose
their diagnosis.
Search or data about whenpeople with Parkinson's disclose
their diagnosis, and what Ifound was, while there isn't a
single large-scale recent studythat provides a statistical
breakdown of when people withParkinson's reveal their
diagnosis, there were somestudies and articles that had
(04:37):
some valuable insights, and Iwanted to share those with you.
Now there was a 2006 studypublished in Neurology that
surveyed 101 patients withParkinson's, and they found that
90% disclosed early to familyand friends.
So this suggests that for mostpeople, their inner circle is
the first group to be told.
Now, patients who delayeddisclosure were more likely to
(05:00):
be male, younger and employedmore likely to be male, younger
and employed.
So this points to a specificdemographic of people that may
face different pressures orconcerns regarding their
professional life.
Now, the main concerns aboutdisclosure were fear of
(05:21):
reflecting negatively onthemselves and fear of upsetting
others.
Now, numerous articles andpatient accounts provided some
insights about the timing andreasons for the disclosure.
Now, one that struck me on apersonal level because this
happened in my case is what theycall the elephant in the room.
Now, a number of accountsmentioned that family members or
close friends may have alreadysuspected something was wrong
(05:41):
before the person disclosedtheir diagnosis, hence
identifying and verifying theelephant in the room.
Now the article suggests that,at least for the inner circle,
the disclosures may confirm asuspicion rather than come as a
complete shock.
All right, now let's take aclose look at the next ripple in
our tier after the inner circle, and that group is your middle
(06:03):
circle.
Now, this would be yourextended family, which might
include your aunts, uncles,cousins, third cousin twice
removed, just kidding on thatone close co-workers and trusted
neighbors.
So if you don't want the wholeneighborhood to know, then don't
tell the neighbor who likes torun around telling everybody the
latest news and gossip.
Now the conversation with thisgroup can be less detailed.
(06:26):
It may be more casual.
Now a good little script to haveready might go something like
this I want to let you know I'vebeen diagnosed with Parkinson's
.
I'm doing well and I'm managingit, but you might notice some
changes like tremor from time totime.
This type of approach setsboundaries while, at the same
time, keeping them informed.
It also gives you a way toaddress a potential symptom like
tremor before it becomes asource.
(06:46):
This type of approach setsboundaries while at the same
time, keeping them informed.
It also gives you a way toaddress a potential symptom like
tremor before it becomes asource of curiosity or gossip.
Now, in my particular case, Ihad a sales position and when I
was working, I had to dopresentations in front of team
members, at team meetings andfor the offices that I called on
.
Now I used a little script likethis I shared with everyone,
(07:06):
because I had to tell them I hada tremor, because it was very
noticeable and I didn't wanteveryone thinking I was very
nervous or wasn't confident inthe information I was sharing.
Now, interestingly, in theneurology study that I
referenced earlier found thatmore than 25% of people waited
at least one year to disclose atwork.
So this highlights asignificant difference in the
(07:27):
timeline for professional versuspersonal disclosure.
Now also, the middle circledisclosures often happen
reactively, when your symptomsbecome visible or questions are
asked like is anything wrong oris everything okay?
Anything I can help with?
Now?
Some of the barriers cited inthe articles I read about
(07:48):
disclosing to the middle circleincluded fear of stigma or pity.
Now people worried that theywould be treated differently or
seen as less capable.
And then next was uncertaintyabout reactions.
Unlike the inner circle, middlecircle people may not offer
unconditional support.
And then it was a desire tomaintain normalcy.
Many people cited that theywanted to avoid being a topic of
(08:11):
conversation or changing socialdynamics, for instance, being
excluded from going to lunchtogether or getting invited to
the after work party.
Finally, and this is animportant one, professional
concerns.
For co-workers disclosurescould raise concerns or fears
about job security, promotionsor being perceived as a
(08:31):
liability.
Now I was very fortunate when Iwas working that my immediate
manager, as well as the entiremanagement group and HR, were
very supportive and were therethroughout the entire process to
support me.
My manager could relate becausehe had some sons with some
health issues that he needed tobalance when he was working.
But that's not the caseeverywhere.
(08:52):
So it's understandable whypeople may hold back on
disclosing.
Now, some of the factors thatinfluence disclosure timing to
the middle group includedsymptom visibility, and that
could include whether you hadtremors or gait changes.
That often forced theconversation, and that was true
in my case.
Emotional readiness People waituntil they feel confident enough
(09:13):
to manage others' reactions.
And then next is therelationship quality.
Disclosure is more likely whentrust and empathy are already
present.
And then, finally, supportneeds when logistical or support
needs become necessary,disclosure tends to follow.
So maybe you need specialassistance or arrangements at
work because of your motorsymptoms.
(09:34):
Then telling the middle circlebecomes necessary.
And then, finally, let's look atthe last group, the outer
circle.
Now, this is for acquaintances,casual friends and your broader
professional network.
Here you don't owe everyone afull explanation.
Now, for this group, a brief,clear.
Your broader professionalnetwork.
Here you don't owe everyone afull explanation.
Now, for this group, a brief,clear statement is often enough.
For example, if someone asksyou about a tremor, you can
(09:56):
simply say it's a symptom of ahealth condition I have, but I'm
managing it well, and you cankeep it as simple as that Now,
remember, you're in control ofall the information you share
and you can give as little asyou feel comfortable with, or
you can give as much as you feelcomfortable with, and it's okay
for you to set those boundariesNow.
Before we move on to the nextsegment, I wanted to share two
(10:18):
additional factors that caninfluence the timing of
disclosing your diagnosis, andthe first is your age and
employment status.
Younger working individuals maybe more hesitant to disclose
due to fears about job securityor professional stigma.
And secondly, social support.
The desire for support fromfriends and family is a major
motivator for early disclosureof your diagnosis Now, on the
(10:41):
other hand, the fear of losingthat support or being pitied can
cause a person to delay tellinganyone.
All right, now let's switchgears and talk about the most
actionable part of ourdiscussion.
Let's focus now on the how totell people that you've been
diagnosed with Parkinson's, andlet's start with our inner
circle Now.
I recommend the preparedapproach Now.
(11:03):
This isn't a conversation youwant to have on the fly.
I recommend scheduling sometime to talk so your family and
close friends aren't distractedby other things and so that they
fully comprehend what you'vejust told them.
So you want to find a quiet,comfortable place where you
won't be interrupted by thephone calls and text.
Now here's an example you canuse to break the ice.
So start off by saying I havesomething important to share
(11:26):
with you.
Now be prepared for anemotional reaction from them and
from yourself.
Now it's okay, even if they saymen, don't cry.
It's okay to feel overwhelmed.
Having some informationresources on hand, like a link
to one of the Parkinson'sfoundations, like the Michael J
Fox Foundation, the DavisPhinney Foundation and the
(11:47):
Parkinson's Foundation, to givethem where they can go and get
some information on themselves,is a great way for them to learn
and understand about thejourney that you're on and then
also that they can help you livewell with your Parkinson's.
So this way, if they want toget more information about
Parkinson's after your meeting,they have some trusted resources
(12:08):
to go to.
So let's move on now to themiddle and outer circle
questions.
Now for those, we need anon-the-fly approach.
This is for when someone asksyou a direct question like why
is your hand shaking?
So the best strategy here is asimple, confident statement like
I have Parkinson's, but it'snothing to worry about.
I'm doing great.
(12:29):
Now, one of my friends was anair traffic controller for
almost 30 years Now, towards theend of his career and before he
was diagnosed, his hand wouldshake and he couldn't figure out
why.
Then one day one of hisco-workers asked him why are you
so nervous?
Why is your hand shaking?
After all, you're great at whatyou do and you've been doing
this for so long.
(12:49):
His response was I don't know.
And then shortly thereafter hewas diagnosed with Parkinson's
and put on medication to controlhis motor symptoms.
And then, because he was onParkinson's medication, he had
to retire due to the regulations.
Now he said his co-workersunderstood then that it wasn't
nervousness but trauma fromParkinson's.
(13:11):
Now the reason I wanted to sharethis is because sometimes the
symptoms you experience givesigns to others that you have
something going on, and thatmakes the discussions easier.
So when you give a short,confident answer to their
questions, this immediatelytakes the power away from their
questions and puts it back intoyour hands.
Now you're not making an excuse.
(13:31):
You're simply stating a factwith confidence.
Now let's address one that mostall of us have heard, and it's
a crucial one addressing thewhat can I do question.
Now, people want to help andthey often don't know how, be
ready with an answer.
It could be something as simpleas you know just continue to be
(13:51):
my friend, or I'd love it if wecould go for a walk once or
twice a week.
This gives them a clear,actionable way to support you
without creating more work orstress for you, and it's a great
opportunity to shape yoursupport system.
Now I wanted to address probablythe most common statement I get
, and I've heard others withParkinson's get the same
(14:11):
question.
So it's almost like a rite ofpassage, and that is well.
You don't look like you haveParkinson's.
Now, when you get thisstatement, your response depends
entirely on your personality,your mood and your relationship
with the person making thestatement.
Now, I always like to keep apositive attitude and I like to
joke around and kid, so I mightrespond with something like well
(14:34):
, I guess there goes my shot atbeing the national Parkinson's
spokesmodel.
But let's give you somespecific ways to address this
and I'll break it down intocategories Now.
The first is the simple, directand educational approach.
Now, this is a great option formiddle circle people,
acquaintances, who are generallycurious but uninformed.
It educates them withoutgetting into a long emotional
(14:56):
conversation.
So here's some of the responsesthat you can consider.
That's because many of mysymptoms are invisible.
Parkinson's is more than just atremor and it affects my
balance, my sleep and energylevels.
Next, you could say thank you.
That's a nice thing to hear.
The truth is, I work reallyhard with medication, exercise
(15:17):
and therapy to keep my symptomsfrom progressing, and then
finally try.
Parkinson's is different foreveryone.
Just because my symptoms aren'tas visible today doesn't mean
they aren't there.
Now, here's why these work.
It helps clarify themisconception that Parkinson's
is only about visible tremors,and it also sets boundaries by
not inviting follow-up questionsabout your health history.
(15:40):
The second approach is myfavorite because it fits my
personality, and that's thehumorous, lighthearted approach.
Now, if you're in a good moodand you want to keep the
conversation light, a humorousresponse can be a great way to
handle it with this type ofsituation.
Now, this works best withpeople you know well enough to
share a laugh with, so try thesefor those occasions.
(16:01):
Oh, you should see me on a badday, or well, I'm trying to
define what Parkinson's lookslike, and my doctor thinks so,
so I'll pass along yourprofessional opinion.
Now here's why a lightheartedapproach works.
Humor can be a powerful tool fordiffusing awkwardness and
taking the sting out of apotentially offensive comment.
(16:22):
It shows you're in control andnot taking the comment
personally.
And then next is the gracefuland curt approach.
So for outer circle people andanyone who makes you feel
uncomfortable, you can keep itshort and sweet.
You don't owe anyone a detailedexplanation.
So try using thank you,followed by a quick change of
(16:44):
subject or.
I appreciate that and looks canbe deceiving.
Now why this works.
It's polite but firm.
It acknowledges that they'recomments without validating the
underlying assumption, and italso signals that you're not
open to further discussion onthe topic.
Now, finally, the I'm offendedapproach.
Sometimes the comments can feeldeeply invalidating, as if your
(17:10):
daily struggles are beingminimized.
So if you feel offended, it'sokay to address that directly,
especially if the person is afriend and you want to educate
them.
So try these responses.
I know you mean that as acompliment, but it actually
discounts all the work that I doevery day to manage my symptoms
.
Parkinson's is a full-time job,or A comment is a little tough
(17:32):
for me to hear, because there isso much more to this disease
than what you can see.
Now why this works.
Now this is a more vulnerableapproach and it can be
incredibly effective ateducating a friend and
strengthening your relationship.
It tells them how their wordsimpact you, which can lead to
more mindful conversations inthe future.
Now remember these approachesare just your toolbox.
(17:54):
Now remember, these approachesare just your toolbox.
There's no right way to respond, and the best response is the
one that makes you feel the mostempowered and comfortable in
that particular moment.
Now, also keep in mind that theperson making the comment is
usually not malicious, butsimply uninformed about the
hidden symptoms of Parkinson's.
All right, now we've coveredthe what, when and how, but it
(18:18):
also helps to hear from someoneelse who has walked this path.
So I want to share with you myown personal Parkinson's
disclosure journey.
Now I want to give you a littlebackground to help set it up.
And so before my diagnosis, Iwas experiencing tremor or
shaking on my left hand.
That's really what started meon my journey to find a doctor
to figure out what was wrong.
Now, initially, I was onvacation with my wife at Deep
(18:39):
Creek Lake in Western Maryland.
Now my wife and I had got backfrom a walk and she decided to
run to the store to pick up afew things.
So my teenage kids were alongand we were hanging out and then
all of a sudden my left handstarted shaking and I couldn't
get it to stop.
So my kids called my wife in apanic and said dad's hand is
shaking, something's wrong.
So my wife came home and saidwe're going to the emergency
(19:02):
room.
I said I'm not going to theemergency room, I'm fine.
So after a few back and forthI'm sitting in the emergency
room and the doctor comes in andexamines me and said well, I
can't find anything wrong, soit's probably stress.
So I'm thinking to myselfstress, I'm on vacation.
But I thanked the doctor andwent back and my hand stopped
(19:25):
shaking a little while later.
And then when I returned home Imade an appointment with the
neurologist because my hand wasstill shaking and he ran a
number of tests over the courseof a couple weeks and during
that time I also starteddragging my left leg when I
walked.
And after the series of testshe finally said I believe you
(19:46):
have Parkinson's.
And then he recommended I go tothe University of Maryland
Neurology to see a movementdisorder specialist, because he
said Parkinson's wasn't hisspecialty.
And he went to University ofMaryland Medical School and said
they had a great program andsaid that I really think that
you should get down there justto confirm the diagnosis, which
I did.
And they confirmed my diagnosis.
(20:07):
So I wanted to give you thatquick overview so it gives you a
better understanding of how Iapproach telling each tier level
.
And let's start with my innercircle of family and close
friends.
So we went home and told mykids and they said I figured you
had something, because they sawmy physical symptoms on a daily
basis.
And they asked me somequestions like are you going to
(20:29):
die or how long does it take toget really bad?
You know those type ofquestions.
So I answered their questionsand they felt more comfortable.
And then I told my parents andmy brother and his family and
again they said they weren'tsurprised because they also saw
the physical symptoms.
I would go to our cabin in themountains with my brother and
his family and and my hand wouldbe shaken and he'd always say
(20:53):
would you stop shaking your hand?
It's driving me crazy.
And I'd say, well, I'm trying.
And then they both said youknow, we'll support you in
whatever way you need.
And then my best friend Scottand his wife Lisa.
We went to lunch with Mary andmyself and we told them and he
said I knew something was wrong,but he wasn't real familiar
(21:14):
with Parkinson's.
So I filled him in on whatParkinson's was and how it
progresses.
He said hey, whatever help youneed, we're there for you.
I mean, we've been friends for50 years and that was great to
hear.
So it was great knowing that Ihad all the support I needed
from my inner circle.
Now the next step was to tellthe middle circle no-transcript.
(22:03):
Look, I'll do whatever's neededto be done in order to help you
.
You know, continue to work foras long as you can.
Now he understood because, as Imentioned earlier, he has two
special needs children at homethat need a care.
Now you may be thinking didn'tyour manager notice your tremor?
Well, actually no, because helives three hours away from me
and we'd get together onride-alongs when he wanted to do
(22:25):
a ride-along in my particularterritory.
So we didn't see each other ona daily basis.
But when we finally gottogether, that's when I
disclosed my diagnosis.
When we finally got together,that's when I disclosed my
diagnosis and then, after a fewweeks, my manager and I told my
manager and his manager.
And then we had a team meetingup in Boston and it was a
three-day meeting then so myteammates could notice that I
(22:48):
had some tremor and that I wasstill controlling it with
medication.
So during a dinner meeting thatwe had one night, people were
inquisitive and I said look, Ihave Parkinson's, I'm doing well
.
And I noticed that most of youprobably noticed that my hand
was shaking.
I said I'm doing fine and I'mgoing to continue to work as
(23:09):
long as I could.
And they were all verysupportive.
They would check in on meweekly to see how I was doing.
And then finally, the outercircle.
So by the time I told my innerand my middle circle people I
was very confident and I reallydidn't have any problem telling
someone I had Parkinson's.
You know, I could be presentingat a lunch and learn, and the
office staff could see my handsshaking and really to break the
(23:31):
ice, I'd start up by saying no,I'm not nervous, I have
Parkinson's.
And then they would ask me somequestions and ask me how I was
doing and they were verysupportive as well and ask if
there was anything they can do.
So in my personal case, I foundthat when I was talking to all
three circles that everyone wasvery supportive and willing to
help me if I needed it.
They all showed genuine concern.
(23:54):
Now I found that when I'm openand upfront about my Parkinson's
journey with people, it reallyhelps take away the thoughts
that they may be having likewhat's wrong with that guy?
He must be really nervous, orwhy is he walking funny like
that?
There's got to be somethingwrong with him.
So when I'm proactive, itreally helps break the tension
that people may feel.
Now that's my personal story ofhow I told each group you have
(24:18):
to do what's best for you onyour own Parkinson's journey and
decide who and when you'regoing to tell others about your
diagnosis.
Now for me to this day now Ihave no problem when I notice
somebody maybe staring, when I'mout in public or if I do a lot
of presentations and I teach acouple classes.
So people may ask and I'll justI'm up front and tell them look
(24:40):
, I have Parkinson's and I'mdoing well with medication and
exercise.
So thank you for your concernand I'll be happy to answer any
questions that you may have.
So telling someone you haveParkinson's really isn't about
pity, it's it's an invitation.
It's an invitation for them tobe part of your life and an
(25:01):
invitation to a deeperconnection with your family and
friends.
I'll remember you're the story,not the disease.
The script, the timing, thedetails all of it's up to you.
You're not just disclosing adiagnosis.
You're building a network ofsupport that's going to help you
live an exceptional life.
So my challenge to you this weekis to think about one person
(25:24):
that you want to have aconversation with.
Rehearse those words that wetalked about.
Take that step, and you mightbe surprised by the love and
outpouring that you're going toreceive from people.
I know that I did so.
Hopefully, this helped you as away to break the ice and
(25:46):
disclose your Parkinson'sdiagnosis and your Parkinson's
journey with your inner circle,your middle circle and,
eventually, your outer circle.
Now, I know it takes time and,again, this is a personal choice
.
You decide when and whereyou're going to tell people.
Now, please visit my website,liveparkinsonscom and subscribe
to the free monthly newsletter,and there's also a bunch of
(26:07):
other free resources on there,like my nine balance exercises
to help you improve your balancewith Parkinson's, and then
there's also a free medicationand symptom tracker, and there's
a number of articles that,hopefully, can provide some
information about Parkinson's aswell.
Now, if you feel that thecontent I provide is valuable,
(26:28):
please consider supporting theprogram at ko-ficom slash
liveparkinsons.
Again, thank you very much forlistening.
Again thank you very much forlistening and remember stay
healthy, stay strong and liveyour best life with Parkinson's.
Thanks again, have a great weekand I hope to see you soon.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.