Navigating Parkinson's Disease From Despair to Determination Part 1

Navigating the emotional tsunami of a life-changing diagnosis like Parkinson's disease isn't a journey anyone chooses, but understanding it can be a beacon of hope in the storm. That's precisely what we unravel in our latest episode, where special guests share their intimate stories and insights on the rollercoaster of feelings that come with such a revelation. From the initial shock and denial to the eventual acceptance and determination, this conversation is a heart-to-heart on the importance of recognizing early signs, debunking age-related myths, and embracing the support of loved ones. We shed light on the subtleties of symptoms that are too often brushed off as mere signs of aging, urging a more compassionate and informed approach to care.

This episode will touch on the often-overlooked emotional distress marked by altered voices and 'mask face'—the expressionless visage that Parkinson's can cause. Yet, despite the diagnosis and fear that often accompanies it, we find threads of hope and optimism. Our conversation today serves as a reminder that beyond the diagnosis, there is life—a life full of potential and fulfillment, just waiting to be reclaimed. So join us as we explore these deep waters, offering a haven of knowledge and understanding for those ready to chart a new course in their health journey. 

Resources
https://www.parkinson.org/
https://www.apdaparkinson.org/
https://www.michaeljfox.org/

Thank you for joining our podcast today. If you have any questions, or comments, or would like to share your own experiences with aromatherapy, please feel free to reach out to us. You can connect with us on social media, or visit our website for additional resources and information.

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We look forward to having you back with us for our next episode, where we'll continue to explore the wonderful world of aromatherapy and its role in promoting mental and emotional well-being. Until then, take a deep breath, relax, and be well. I hope to hear from you soon. Your feedback is most welcome.

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Episode Transcript

Speaker 1 (00:01):
There are certain phrases you are absolutely never
prepared to hear, and they canevoke strong feelings and
emotions that range from fear,confusion, absolute horror, to
relief and maybe even joy.
Words like you're pregnant, orwords like you have cancer, or

(00:29):
maybe even the words you haveParkinson's.
Everyone reacts differentlywhen receiving these kinds of
diagnosis, but the mostimportant thing is, when you are
supporting someone who isreceiving this information, that
you be supportive.
Other reactions might bereacting with despair.

(00:53):
A diagnosis like this can causefeelings of anger and
depression.
Imagine that they have had aplan for their lives that did
not include this and withoutinformation about Parkinson's,
they have only what they haveimagined or maybe myths that

(01:13):
they have heard about, and sothis can be very difficult.
Another reaction to diagnosisof Parkinson's might be denial.
Denial is hearing theinformation, understanding what
it means, but not being able tomake it applicable to themselves

(01:38):
.
It's very difficult tointernalize sometimes this
information because of theconfusion married with the idea
of the type of person, the typeof reality that they have been
facing.
And again, if you haveexpectations about maybe that

(02:03):
there aren't things that can bedone to improve your life, then
it may be very much overwhelmingindeed.
But on the other hand, for somepeople they are experiencing a
bit of relief.
The relief comes because theyhave seen signs and symptoms.

(02:23):
They have known something iswrong, or others around them
have been complaining that.
They have seen symptoms buthave not been able to tell
exactly what's going on.
And so the diagnosis is a formof relief for them, because now
they have that in hand, adiagnosis, they know what's

(02:44):
going on.
And if you know what's going on, if you've got a diagnosis or a
reason for what you've beenseeing, then maybe there's
something that you can do aboutit.
It can also produce, afterhearing this information, a bit
of resolve.
What do I mean by that?
Well, once you have thisdiagnosis, you have some

(03:06):
decisions to make on how you'regoing to progress, and that can
take some time as well.
It's kind of like the stages ofgrief when you hear information
, you experience a bit of denial.
It may take a while to movefrom that into some type of

(03:26):
action, and so when people hearthis information, after a time
they make the decision thateither their life is over or
their life can be just beginningin a new way.
Parkinson's, historically, hasbeen a little bit challenging

(03:52):
because there's not really atest that one can take.
There's no blood test that isto say that you can take to tell
that you have Parkinson's.
Really, they're looking atsigns and symptoms or
observations that people make.
And because people don't alwaysreadily go to the doctor,
sometimes this diagnosis isdelayed.

(04:13):
Or because there are stillmyths around when a person can
be diagnosed with Parkinson's,treatment and diagnosis are
still delayed because we stillthink that Parkinson's only
happens in people who are reallyold, which again is a very,
very outdated myth.

(04:34):
Here are about 10 signs thatare apparent in people with
Parkinson's and, again, about15% of people with Parkinson's
are under the age of 50 andabout 5% of people with

(04:56):
Parkinson's are under the age of40.
And that's called early onsetParkinson's.
And so one of the things thatis important to be able to hold
in order to help people withParkinson's or living with
Parkinson's is to understand thesigns and the symptoms.

(05:18):
One of the first signs that youmight notice is a tremor in the
hand, and that tremor might lookdifferently.
It may not be as severe as youmight think, it might be slight
and it might not be every dayall day.
Sometimes that tremor kind ofdissipates and you don't see it
very often, but it creeps backup on you again.

(05:41):
Have you noticed, maybe slightshaking a tremor in yourself or
someone you love?
One of the other things thatcould happen along with that
tremor is difficulty in holdingthings or being able to
manipulate car keys.

(06:01):
Stick the key and the ignitionor the remote controls.
These are things that wouldjump out at you if someone were
having this problem pretty often.
It should not be ignored.
Another symptom might besmaller handwriting and again
this is because you don't havethe dexterity or control in your

(06:24):
hands that you would normallyhave if you were having just a
normal way of writing.
If you will, change inhandwriting might also be a sign
that you have Parkinson's.
A loss of smell Some peoplebelieve that with age, the loss

(06:49):
of hearing and the loss of smell, you know, your senses begin to
dull and while this is true, itcould be something to kind of
pay attention to.
I know that we are challengedin these days and times because
of SARS-CoV-2, if you will, butthere are other things that can

(07:09):
change your senses.
Definitely not something to beignored and definitely a place
to have a discussion.
Some things that you mightnotice with someone diagnosed or
with these symptoms are thatthey are not able to notice if
they indeed have a smell aboutthem or if something is burning

(07:33):
or if there are other odors oraromas that are abnormal.
They are not as able to tellwhat they are or what's going on
about them.
Trouble sleeping Another symptomthat some people say happens as
you get older, that you needless sleep.

(07:54):
But it could be a symptom ofParkinson's Not just not
sleeping, but not sleepingdeeply.
Very easily aroused, they makeit up in the night and you hear
them fumbling around in thekitchen or the light is on, as
they do a little night readingor early morning reading, or

(08:15):
going into the living room orturning the television on in
spaces to entertain them, tofill those hours.
It's not just a getting oldsymptom, if you will, or getting
older symptoms.
It may be something else, noteven just Parkinson's.
So if there is insomnia, youwant to ask a few more questions

(08:35):
and check that out.
Another big one is stumblingabout difficulty moving, a
stiffness about their way ofmoving.
It may seem that they havelittle control.
It may have difficulty withgetting up from spaces or even
sitting down where they'replopping down, or they may need

(08:55):
assistance up, or they have towriggle their way up out of a
chair or something along thoselines.
They may even have a gaitthat's difficult wider, if you
will in order to control theirstance.
There's falling as well, andthis can be very dangerous, not

(09:17):
just in older people, butyounger people as well.
Head traumas may increase thehip fractures.
These are dangers thatdefinitely change the life of
individuals who are strugglingin this way, and so when you
notice these things, it's veryimportant to ask a few more
questions.

(09:38):
If you are not used to beingaround someone who is struggling
or challenged in this way.
When you have an opportunity,do a little investigative
questioning, if you will, justto find out how long it's been
happening and the changes thatoccur as a result of these
things.
Oftentimes, one symptom may beapparent, but classically in

(10:04):
this diagnosis, a lot is goingon at one time.
Constipation can be reallyembarrassing to talk about, but
it is another symptom ofParkinson's, and it can be very
painful.
Sometimes people may even takemedications from over the

(10:24):
counter that do not give relief,and there are all kinds of
implications to thisconstipation, and so talking
about challenging things againcan be difficult, but you can
also explore these things andmaybe accompany your loved ones

(10:47):
to the doctor and ask aboutcertain questions.
Ask your loved one if you can'tattend the doctor's appointment
.
Talk about some of the symptomsthat are most bothersome to
them.
Express an understanding thatyou realize that it might be a

(11:07):
little difficult to talk about,but that you are supportive and
that what that support comeswith is non-judgment, caring and
a genuine desire to want tohelp them to figure things out
so that their lives can beimproved.
Noticing a change in their voice, that it has dropped.

(11:28):
Their tone of voice is changing.
It's a bit more airy or breathy, if you will, and masked face
dizziness or feigning, and thenthe hunching over a bit, the way

(11:50):
they carry their shoulders.
The mask face really is moreabout an expressionless face, if
you will.
So you can even give thisperson a gift that they've been
anticipating and are excitedabout, and they may say thank
you, but the surprise or the joythat would normally accompany

(12:12):
receiving such gifts is just notthere, and it can be difficult
to cope with, but not impossible.
These are a few of the signs,and next time we are together, I
want to explore a little bitmore about the hope that comes
along with the diagnosis,because there is hope.

(12:34):
Thank you for joining me todayon today's podcast Coming Home
with Dr Mary Ann Jefferson,looking forward to talking with
you again soon, god bless.