March 12, 2025 • 39 mins
🚀 Want better Parkinson’s care? It starts with the right team.
In this episode of Live Parkinson’s – Live an Exceptional Life, we dive into the essential role of a Parkinson’s care team and how assembling the right support system can drastically improve your treatment, symptom management, and overall quality of life. Whether newly diagnosed or looking to enhance your care, this episode will guide you through the who, what, and how of building a multidisciplinary Parkinson’s team.
🔹 In this episode, you’ll learn:
✔️ Why a care team is critical for managing Parkinson’s effectively
✔️ The key specialists you need—neurologists, physical therapists, speech therapists, and more
✔️ How to find the right doctors and support professionals
✔️ The role of caregivers and family in supporting your journey
✔️ How to use the Building Your Parkinson’s Care Team Resource Guide & Workbook to create a personalized care strategy
📖 Get your copy of the Resource Guide & Workbook:
👉 Liveparkinsons.com (Home Page)
👉 Ko-fi.com/liveparkinsons
📰 Read the latest article:
📌 Building Your Parkinson’s Care Team: Essential Guide to Multidisciplinary Support → Liveparkinsons.com
📩 Subscribe to the FREE Monthly Newsletter:
🔗 Join the community for tips, resources, and expert insights → Liveparkinsons.com
📢 Don’t forget to subscribe to the podcast and leave a review—it helps more people find these life-changing resources!
#ParkinsonsCare #ParkinsonsSupport #Neurology #LiveYourBestLife #ParkinsonsDisease #CareTeam #HealthandWellness #ParkinsonsPodcast
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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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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
Hello, welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, chrisKustenbotter, and I've been
living with Parkinson's for 15years.
This podcast is all abouthelping you navigate and live a
great quality of life withParkinson's through sharing the
latest research, personalexperiences and actionable
strategies to help you thrive.
Today's topic is building aParkinson's care team the key to
(00:34):
better care and quality of life.
I remember a conversation I hadwith a man named Tom.
Tom had been living withParkinson's for about five years
, but he said he was feelinglonely and fighting an uphill
battle.
He said his doctor prescribedmedications, but he said he had
really not done any physical orspeech therapy, was struggling
to find nutritional advice andalso emotional support through
(00:58):
support groups.
His wife Lisa was doing herbest as his caregiver, but she
also said she was overwhelmedand exhausted.
They didn't know where to turnfor help or how to put together
the right team of professionalsto support them.
That's when I told Tom aboutthe importance of building a
Parkinson's care team a group ofmedical experts, therapists and
(01:18):
supportive people who couldwork together to help him manage
his symptoms and help take someof the stress and burden off of
the caregiving of his wife Lisa.
The care team could also helphim maintain his mobility, stay
active and engaged in socialactivities and live a great
quality of life with Parkinson's.
I told Tom that I built aParkinson's care team 12 years
(01:40):
ago and it has helped me live agreat quality of life with
Parkinson's since then.
Tom listened to my story andtook my advice seriously, and
today he has a care team thatincludes a movement disorder
specialist, physical therapist,speech therapist, occupational
therapist, a fitness trainer andnutritionist, and then he's got
family members and caregivers,and also now he attends a
(02:03):
Parkinson's support group.
He said he and Lisa are nolonger alone on this journey and
the difference in how he'sliving his life is incredible.
That's exactly what we'retalking about today how to build
the right care team so you getthe comprehensive care you need
to live your best life withParkinson's.
So let's look at why aParkinson's care team matters.
(02:23):
So you may be thinking toyourself so, Chris, why is a
care team so important?
You said you had developed one.
Well, that is a great question,because my guess is that not a
lot of people with Parkinson'shave a care team, and the reason
that they're so important andbeneficial is because
Parkinson's affects more thanjust our movement.
It impacts our speech, ourmental health, digestion, sleep,
(02:46):
mood, all of those things.
And having a single doctor isn'tenough.
You need a team of experts whowork together to address each of
the aspects of your health, aswell as a group of caregivers to
help you manage your care andlive your best life.
This way, you have peopleexperienced in a broad range of
areas that impact your care, soyou have someone that can take
(03:08):
care of your balance and yourgait.
You have someone that can helpyou with, let's say, you have
anxiety, someone to help youwith your sleep.
You can have a nutritionist.
All these people can help you.
So one of the benefits ofhaving a strong care team help
you is that they can help youmanage your symptoms more
effectively, improve yourmobility and independence,
(03:29):
reduce your stress and thestress for caregivers as well,
and they can help you stayinformed about the latest
Parkinson's treatments andstrategies.
But how do you find the rightpeople to put together a team
that works best for you?
That's where my new Buildingyour Parkinson's Care Team
Resource Guide and SupplementalWorkbook come in.
Now I created a 35-pageBuilding your Parkinson's Care
(03:51):
Team Resource Guide and a22-page Supplemental Workbook
that was based on my experienceon building a Parkinson's care
team, as well as input from allthe different specialties on a
Parkinson's care team and theones that I've had interactions
with over the course of myParkinson's journey.
So it's a collaborative effortof personal experience and
(04:16):
working with medical and healthprofessionals to put together a
document that can help you builda Parkinson's care team to get
the best care that you canpossibly get.
So the intent was to make theprocess easy for you.
So it's really it's astep-by-step roadmap to help
guide you and help you identifykey professionals that you're
going to need, from a movementdisorder specialist, neurologist
(04:40):
, to the different types oftherapies that are out there
Physical therapy, speech andoccupational therapy.
It addresses a nutritionist,mental health professionals for
anxiety, depression and anyother type of issues that you
may have.
A fitness trainer, which a lotof people don't think about, but
we talked before about theimportance of exercise and how
(05:00):
it's one of the keys to help youmaintain your mobility and
independence.
So a certified fitness trainer,preferably one that has some
experience with Parkinson's, isvery beneficial.
And then the guide helps youcommunicate effectively with
your care team.
It helps you organize yourmedical records, appointments
and medications.
It includes how to find supportgroups and community service
(05:22):
resources.
It includes how to find supportgroups and community service
resources.
It discusses how to reducecaregiver stress and improve
communication between familymembers and your health care
providers, because sometimesthere's a disconnect between
what you think and what yourhealth care provider thinks.
It also includes a section onfinancial planning and insurance
(05:46):
, which a lot of times we don'tthink about.
But whether we're stayingindependent and living in our
house, or whether we're movingto assisted living or we need
skilled nursing, we need to beable to plan for those, and so
there's a section on financialplanning and insurance to make
sure that you're coveringyourself.
And then staying organized andovercoming challenges are part
of the plan, as well asresources to help you with the
process.
It's a soup to nuts guide onstarting from step one and
(06:10):
working through until you haveyour Parkinson's care team put
together and you can grab yourcopy.
It's available onliveparkinsonscom.
On the homepage, underneath themission, you'll see it'll say
new building your Parkinson'scare team resource guide and you
can click to get your copy.
Or you can visit my Ko-fi page,ko-ficom slash live Parkinson's
(06:32):
and it'll take you to the shopand you can get it there, and
then I'll leave links in thepodcast description.
Now I've developed a lot offree resources in the past
several years, for instance,nine balance exercises for
improving your balance withParkinson's, and we have the
free monthly newsletter.
I have a free resource guide onthere as well as a free symptom
(06:52):
tracker.
Now, unfortunately in this case, due to the time commitment and
development and production cost, I do have to charge a nominal
fee for the document, and theproceeds are going to be used to
help support the podcast, thewebsite and developing future
resources, as well as donatingto Parkinson's foundations to
help push forward Parkinson'sresearch.
All right, so let's look at thekey steps on how to build your
(07:15):
Parkinson's care team.
Now, I don't know about you,but I'm a very simple person and
I like to break things downinto smaller, simpler tasks,
especially things that are alittle bit more complex.
So that's what I decided to dowith the podcast is to take how
to build a Parkinson's care teamand we'll break it down into a
step-by-step manner.
I thought it'd be easier thatway and hopefully it's easier to
(07:37):
follow along.
So let's start off with stepone and start with your core
medical team.
I'll share my Parkinson'sdiagnosis story and then how I
came to select the doctor that Isee now and I've been seeing
him for the past 14 years andthen we'll talk about some of
the other core medical peoplethat you need on your team.
(07:57):
When I was 46, I started toexperience a tremor in my left
hand and I was dragging my legwhen I walked.
We'd go for a walk in theevening and my wife would.
And I was dragging my leg whenI walked.
We'd go for a walk in theevening and my wife would say
you're dragging your leg.
So we decided to see aneurologist to see if they could
diagnose what the problem is.
So, after the initial wait toget an appointment with the
neurologist, I was able to getan appointment with Dr R and DrR
(08:21):
really listened to me explainmy symptoms and I also told him
what an emergency room doctortold me when I was on vacation.
When my hands started shaking,my wife said You're going to the
emergency room and I said no,I'm not.
She said yes, you are, and Isaid no, I'm not.
Well, a half hour later I'msitting in the emergency room
and they told me that it'sprobably stress.
So he did an examination andsaid Well, sometimes there is
(08:48):
underlying stress which cancause shaking.
He said let's see if we canrule that out.
So he prescribed somemedication and said that let's
have you try some meditation andmindfulness exercises as well.
So we scheduled a follow-upappointment in six weeks to see
if that solved the issue or ifanything else needed to be done.
(09:10):
Well, during that six-weekperiod my leg dragging was
getting worse and so was mytremor.
So I called the office and Dr Rsaid come in.
And so I went in and he saidwell, it looks like we've ruled
out stress and anxiety.
Maybe you have a nerveconduction issue.
So we scheduled a nerveconduction test to see if this
was the issue.
Now, while the nerve conductiontest was fun and all well, no,
(09:33):
not really.
The good thing is the resultswere negative in terms of having
a nerve conduction problem.
So then Dr Ars decided to try aParkinson's medication at a low
dose, and after the second daythe tremor had almost stopped
and Dr R said he believed that Ihad Parkinson's and said that
(09:53):
he suggested that I see amovement disorder specialist
Because they have expertise inmanaging Parkinson's patients.
He suggested that I go to theUniversity of Maryland Neurology
Group.
He said that's where he went tomedical school and they have an
excellent Parkinson's program.
So he referred me to theUniversity of Maryland Neurology
and I've been a patient therefor the past 15 years and I have
(10:16):
to say I've had great qualityof care and very pleased with my
movement disorder specialistand my quality of life after 15
years with Parkinson's.
Not only did I receive greatcare from the movement disorder
specialist, but going down to aresearch center like the
University of Maryland also gaveme the opportunity to
participate in a number ofclinical studies, and the most
(10:39):
memorable study for me was adouble-blind placebo-controlled
study that followed by a 12-weekopen-label study that was for
an inhaled form of dopamine, andthe benefit was I had the
opportunity to work closely withthe movement disorder
specialist, the clinical staffand I even got to work with the
pulmonary group because they hadto test if there was any
(11:01):
pulmonary issues with the drug,and it was a great learning
experience in the drugdevelopment process and the
study I was in.
The drug ended up beingreviewed and approved by the FDA
for market about 12 to 18months after I completed the
study.
So I felt good that I was ableto participate and help bring a
beneficial drug to the market.
(11:21):
All right.
So one of the questions I getasked a lot is well, why should
you see a movement disorderspecialist?
Who are they and how are theydifferent from a general
neurologist?
Well, first, it's important tonote that movement disorder
specialists are neurologists,but they have additional
training in diagnosing andtreating conditions that affect
movement, like Parkinson'sdystonia.
(11:43):
Where they're different fromgeneral neurologists is first,
they get more specializedtraining.
So after they complete theirneurology residency, the
movement disorder specialiststypically spend an additional
one to two years doing afellowship training focused
specifically on movementdisorders, and this extra
training is going to equip themwith in-depth knowledge of their
(12:05):
conditions and the treatmentsthat are available.
And then, second, is theirexpertise in complex cases.
Movement disorder specialistsare skilled at managing
challenging cases.
They can fine-tune yourmedications and they can even
help address a lot of the sideeffects that you either see from
Parkinson's or some of themedications.
They're also familiar withadvanced therapies like deep
(12:28):
brain stimulation surgery, aswell as the new focused
ultrasound.
And then, third, is their focuson their movement disorders.
While general neurology tendsto treat a wide range of
conditions like epilepsy,multiple sclerosis, they see
Parkinson's patients.
Movement disorder specialistsdedicate their practice to
(12:49):
movement disorders and thatallows them to stay updated on
the latest research andtreatments that are available.
So they usually attend a lot oflike the World Parkinson's
Conference and a number of otherconferences where they can
learn from other movementdisorder specialists as well as
from corporate and governmentalagencies.
(13:09):
And then, finally, you get acomprehensive care with a
movement disorder specialist,because they often work with
multidisciplinary teams likephysical, speech and
occupational therapy.
They often have connectionswith behavioral health.
Maybe some of them haveconnections to nutritionists, so
(13:31):
they're able to refer you tothese particular specialties to
help give you a holisticapproach to your care and to
address both your motor andnon-motor symptoms.
Okay, so now that we understandhow a movement disorder
specialist is different than ageneral neurologist, what are
some of the benefits of seeing amovement disorder specialist?
(13:51):
Well, first is they can providean accurate diagnosis.
Movement disorder specialistsare skilled in distinguishing
Parkinson's from similarconditions and in ensuring a
precise diagnosis, becausenobody wants to be told, hey,
you have Parkinson's, and thentwo or three years later you
find out, no, I don't haveParkinson's.
Secondly, they optimize yourtreatment plans.
(14:14):
They have expertise in managingboth your motor and non-motor
symptoms, and they can fine-tuneyour medications and address
side effects.
According to the article whatDoes a Movement Disorder
Specialist Do?
By the American Parkinson'sDisease Association, movement
disorder specialists do by theAmerican Parkinson's Disease
Association.
And then third is the access toadvanced therapies.
(14:36):
Movement disorder specialistsare often involved in clinical
research and are aware of thelatest treatments and
technologies they provide, sothey give you comprehensive care
.
And again, it's by workingacross our multidisciplinary
teams, including physical,speech and occupational therapy,
sleep doctors, mental health.
And if you want to learn more,I wrote an article on
liveparkinsonscom titled FiveAuthentic Benefits of Seeing a
(14:59):
Movement Disorder Specialist.
And again, if you go toliveparkinsonscom and look under
the blog section, you'll beable to see the article that I
wrote.
Some interesting data publishedby the Michael J Fox Foundation
looked at a study using 2019Medicare data, and what the
study revealed was that only 9%of people with Parkinson's in
(15:20):
the US received care from amovement disorder specialist,
despite evidence showing thatspecialized care improves your
quality of life.
So patients under the care of amovement disorder specialist
are more likely to receivepersonalized treatment plans and
better symptom management.
So that's why I personally andhighly recommend seeing a
(15:41):
movement disorder specialist.
Now, does that mean you won'tget good quality care seeing a
general neurologist?
No, absolutely not.
General neurologists canprovide great quality of care as
well.
Sometimes there are limitingfactors to seeing a movement
disorder specialist.
So, for instance, where youlive.
(16:02):
You might live in a rural areawhere there's not great access
to movement disorder specialists, so you see a neurologist.
Now I'm not insinuating thatyou get less care with a general
neurologist, but I still dorecommend seeing a movement
disorder specialist because ofthe benefits that I discussed.
All right now, movement disorderspecialists are just one part
of your medical care team.
Other key players on your corecare team is your primary care
(16:25):
physician and they're going towork in conjunction with your
movement disorder specialist toprovide ongoing care for you.
And then physical therapyPhysical therapists can provide
plans to help you with yourbalance, your gait, your
flexibility, pain and now.
I've personally visited andconducted physical therapy
training three times a week forfour to six weeks during the
(16:48):
course of my 15-year journeywith Parkinson's, and one of the
things I really liked is theydeveloped a plan to help me
improve my balance and my gaitbecause I was dragging my left
leg when I was walking.
Now, the nice thing about theplans that the physical
therapists put together are thatthey can be done both in office
and at home, and preferablythey want you to do them at home
(17:08):
as well, to reinforce whatyou're doing in the office and
you're actually going to helpreach your goal a lot faster as
well.
Now I will tell you that thereare no gentle stroll through the
park exercises.
So when you go to physicaltherapy, they push you to
improve, but they also know whatyour limitations are and how
far to push.
Now, all three times I visiteda physical therapist, I was able
(17:30):
to improve from where I was atbaseline, and so if you're
having mobility, balance or gaitissues, don't be afraid to ask
your doctor for a referral tosee a physical therapist.
Most of the time they'd be morethan happy to send you there
because they want to see youimprove in your mobility and
your gait.
So if you feel like you'rehaving trouble, just say hey,
(17:51):
can you refer me to a physicaltherapist, and then they'll
contact you and you go in andthey'll do an assessment and
then put a plan together for you.
All right, in addition to thecore medical team, there are
other specialist supportpersonnel who can play a key
role in your care.
Now these would include speechtherapy, and speech therapies
(18:15):
not only can help you with asoft speech, but they can also
help you with address swallowingissues, because a lot of times
we know, as Parkinson'sprogresses, people start having
some difficulty with swallowingissues.
I've personally visited aspeech therapist on two
different occasions.
Gabrielle, because my friendswere and family were telling me
I was hard to hear and that Ineeded to speak up.
Now, of course, I told themthey probably had a hearing
(18:38):
problem, and Gabrielle waswonderful and helped me not only
to improve my volume, but shealso taught me to be able to
project and that way peoplecould understand what I was
saying a lot better.
Now my friends and family saidthey definitely saw and heard an
improvement after I saw thespeech therapist.
So I highly recommend speechtherapy because it can
(19:01):
definitely help you address softvoice and any type of
swallowing problems that you mayhave.
And then next up is occupationaltherapy, and they can help you
with daily tasks by giving youspecific exercises to work on,
and they can even do home visits.
You know, you can say call upand say can you.
I'd like an occupationaltherapist to come and assess my
(19:24):
home and ensure things are safearound your house.
They may make recommendationsfor adding things like grab bars
or more lightened hallways,removing loose rugs, those type
of things.
Now I have seen a occupationaltherapist and the reason I went
was to help me with my finemotor skills, especially in my
hand with the tremor.
(19:45):
I had seen a drastic reductionin my fine motor skills and it
was really becoming difficult todo some of the tasks that I
needed to do, as well as it wasreally hard to participate in
two of my favorite hobbies,which were playing the guitar
and fly fishing and fly tying.
So fly tying requires a lot of,you know, fine motor skills,
(20:05):
even just to put the hook in thevice, and so I was, you know,
having trouble with that, andthe occupational therapist gave
me specific exercises that Icould do daily to help me
improve my fine motor skills,and one of the things they also
recommended was using a weightedglove to help with the tremor
and reduce the tremor and makeit easier to complete the things
(20:26):
that I wanted to complete.
Now, another specialty area thatis often overlooked is mental
health specialist.
Now, I know there's often astigma of seeing a mental health
specialist because people oftenthink that, well, there's me,
think that I'm have a mentalhealth problem, or you know that
I'm crazy, you know but it isimportant to keep in mind that a
large percentage of people withParkinson's experience anxiety
(20:49):
and depression.
Now, I have no issues tellingpeople that I went to see a
mental health professionalbecause I was having anxiety and
panic attacks which wererelated to the Parkinson's, and
so they gave me techniques towork on, and one of those
techniques was cognitivebehavioral therapy.
So I have very few problemswith anxiety anymore or panic,
(21:14):
and so I still use cognitivebehavioral therapy today to help
manage issues with anxiety orstress, and if you want to learn
more about it, you can listento my podcast that's entitled
Parkinson's and Anxiety howCognitive Behavioral Therapy Can
Help you Take Back Control.
Now, I've always believed youneed to do what's best for you
(21:36):
and not worry about what othersthink, so if you're experiencing
some issues, please consult amental health specialist.
They can really help you out.
Another specialist to consideras well is a sleep disorder
specialist.
Another specialist to consideras well is a sleep disorder
specialist and, as myParkinson's symptoms have
(21:57):
progressed.
One of the major non-motorsymptoms that I have issues with
is the effect on my quality ofsleep sleep issues.
Now I have no problem fallingasleep.
It's I often wake up severaltimes to use the restroom and
then have trouble falling backto sleep.
Or I start waking up at 2 amand then by most days I'm out of
bed between 2.30 and 3.15,regardless of what time I go to
(22:17):
bed.
So if I stay up till 11 pm, I'mstill waking up between 2 and 3
.
So that only gives me aboutthree to four hours of sleep and
you do that over a number ofdays and it really does begin to
take a toll on you All.
Right now, one of the benefitsof the sleep specialist and I've
seen one of those as well, so Ipretty much run the whole
gambit of seeing everybody onthe Parkinson's care team but
(22:39):
she gave me some sleep hygienetips and she also made some
adjustments to my CPAP machinefor sleep apnea and they
definitely have helped.
So after seeing a sleepspecialist and implementing the
recommendations, I actually dofeel more refreshed when I wake
up in the morning and don'texperience as much sleepiness
and fatigue as I did in the past.
Finally, last but not least, isa nutritionist or dietitian,
(23:04):
and they can help you evaluateyour current diet and make
recommendations to help you tohealth your diet and ensure
you're getting the appropriateamount of macronutrients the
proteins, fats and carbohydrates, as well as micronutrients the
proteins, fats and carbohydrates, as well as micronutrients,
your vitamins, minerals andantioxidants.
And I met with a nutritionistas well and she put together a
(23:24):
recommended nutritional planbased on the foods I like and
that would help me on myParkinson's journey.
Okay, well, your core medicalteam is the driver for managing
most of your Parkinson's motorand non-motor symptoms and your
overall quality of life.
It's important to note thatParkinson's, again, isn't just
physical.
It impacts your mood, yourcognitive function and your
(23:45):
quality of life.
A specialized therapist orcounselor can help you address
the non-motor symptoms that areimpacting your daily life.
So it's important to involvecaregivers and family members
into your care plan Spouses,children and friends who can
provide the emotional supportand the practical support like
getting your medications ordriving you to appointments or
(24:08):
sitting in the visit when you goto the doctor, taking notes so
you don't miss anything that thedoctor might be stressing
during the visit.
They can drive you toappointments.
They can help you fill out yourinsurance paperwork, they can
help you with financial planningor just any of the daily
finances or daily tasks that youneed to do.
So it's important to have astrong network of friends and
(24:31):
family that are there to supportyou so that your primary
caregiver, whether it's a spouseor whoever it happens to be,
doesn't experience burnout andfrustration.
Now, as a personal example, Idon't drive long distances
anymore because I get fatiguedand I don't want to cause an
accident and kill somebody else.
(24:51):
So when I'm visiting my familywhere I grew up, which is about
two hours from where I live, mybrother or a friend usually
drive down to my house and pickme up and drive me back up, and
a lot of times my wife, mary andI will meet them somewhere
halfway between.
And now I hate not being ableto drive myself long distances
(25:14):
and I feel like a burden on myfamily and friends.
It's the best option for me andit helps keep me from driving
off the road after being on theroad for a long time.
Also, they said that if therules were reversed, I would do
the same thing for them, whichis true.
Now, another area to consider isrespite caregivers.
Now, another area to consideris respite caregivers, and they
(25:36):
can assist your family membersand help you reduce the burden
and potential burnout forcaregivers.
So remember, being a caregiveris tough, but support is
available to take advantage ofso that you can get all the help
and support you need.
And so respite caregiversthey'll come in and I'll be with
you while your spouse orcaregiver goes and gets some you
(25:59):
know personal time to do whatthey want to do.
So I guess my public serviceannouncement is you know, if
you're a caregiver, don't try todo it alone.
The next step is to connect withcommunity resources.
But you know, make sure thatyou include help as part of your
care team, because you need totake some time for yourself as
(26:20):
well.
And finally, you want toconnect with community resources
.
So what does this mean?
Well, you can identify andattend Parkinson's support
groups to help you stay activelyengaged, because one of the
things you don't want to do isbecome socially isolated,
because then that just tends tospiral down into the black hole
(26:41):
and you become lonely and itjust goes on from there.
So one of the benefits of beingin a Parkinson's support group
is you get to hear otherpeople's stories and how they
overcome their challenges,especially the ones that come
with you know Parkinson's.
And then many support groupsalso have activities that you
can get involved in, likewhether it's a bus trip or, you
(27:05):
know, painting day, or maybeit's something with music dance.
So there's a lot of differentactivities that support groups
have available and other supportgroup resources besides
in-person you can have.
They have their differentonline communities, like.
There's a Facebook, severalFacebook communities that you
can join and participate in.
(27:26):
There's Reddit and other placeson the internet and you can
learn from others in an onlineformat.
So if you don't like to go outand interact, they're available
there as well.
And then, finally, look forlocal programs, which are often
supported by grants and are freeto use, and consider
participating in local exerciseprograms like Rock Steady Boxing
(27:49):
, or I teach a weekly Pedalingfor Parkinson's class, which is
sponsored by the Davis PhinneyFoundation.
There's also a dance, yoga andtai chi classes that you can
find locally to help you withyour balance, flexibility and
gait.
So consider surroundingyourself with people who
understand your journey and itreally can make a big difference
(28:10):
in your quality of life.
So visit the Parkinson'sFoundation website and they have
a support group finder to helpyou find the resources in your
area.
Now, another key piece ofbuilding your care team is
reviewing your insurancecoverage and finances and
developing a financial plan.
Now I've included a unit in theBuilding your Parkinson's Care
(28:32):
Team Resource Guide and afillable worksheet in the
workbook.
So staying organized andovercoming challenges is another
key piece of that.
So make sure that you considerfinances and insurance, because
that's going to be one of thekey drivers going down the road
as well.
In addition, as a team, youneed to figure out how you're
(28:53):
staying organized.
Are you going to communicateover email, phone, in person,
through letters?
There's all kinds of differentsites out there that you can
almost do like a projectmanagement.
There's one called ClickUpwhere everybody has tasks and
you can put in the dates andtimes and things like that when
they're due.
So staying organized and thenovercoming challenges is another
(29:16):
key piece of the puzzle, andI've included sections on these
two topics, including some ofthe websites and apps that you
can use for communication,tracking and organization, and
then how to overcome challenges.
Other tools that can be used tohelp you and your care team be
successful are you know asymptom tracker which you can
(29:36):
use to track and monitor yoursymptoms, both motor and
non-motor symptoms, and in termsof the type of symptom, the
severity, the time of day, howbothersome it is for you, and
you can share this with yourdoctor and that can help them
get a picture of when you'rehaving the most difficulty
(29:58):
throughout the day and they canmake medication adjustments to
help you with that.
In terms of the symptom tracker, if you visit liveparkinsonscom
, there's a free symptom trackeron there as well that you can
use, and another key area totrack it is your list of current
medications and there's a freemedication tracker in the
resource guide for voting yourParkinson's care team.
(30:20):
So you list your medications,the dosage, the color, all that,
so when you go to the doctoryou can have a list all ready to
go and that way they make surethat the medications you're
taking are the ones that theyhave in your records as well.
And, finally, if you need tokeep a medical notebook to write
down any key information, likeyour insurance information,
(30:41):
notes from your doctor, anycorrespondence with the doctor
you receive in terms of clinicalsummary notes from your visit,
notes and requests you sent toyour doctor, and your next steps
and action plan.
Now, remember you don't have todo it all at once.
So start with one or twoprofessionals, build your care
team over time.
The key is just to start.
(31:03):
You know, as the Indian proverbused to state, that the journey
of a thousand miles begins witha single footstep, and that's
so true.
So realize that it takes alittle bit of time to develop a
care team, so it's not going tobe perfect.
So if we at least get startedand we're making progress, we
(31:39):
can make adjustments.
But if we don't start inparalyzing ourselves because of,
well, I need to plan more, Ineed to do some more research,
then you're not going to get thecomprehensive care that you
need.
So, as we wrap up today'sepisode, I wanted to leave you
with one key takeaway, andthat's you don't have to face
Parkinson's alone.
The right care team can be thedifference between just managing
(32:02):
your symptoms and trulythriving with Parkinson's.
So having the right doctors,therapists, caregivers and
support network in place isgoing to allow you to stay
active, independent and incontrol of your health.
And that's, again, that's why Icreated the Building your
Parkinson's Care Team ResourceGuide and Supplemental Workbook.
It's to give you a clear,step-by-step plan to assemble
(32:24):
the support system you need tolive your best life.
And again, it's based on my ownpersonal experiences living with
Parkinson's and, believe me,I've had struggles along the way
because I wasn't sure where toturn when issues arose.
So the first three years beforeI had a Parkinson's care team,
I was lost in the desert myselfbecause I'm thinking where do I
(32:45):
go to get all these resources?
And so, luckily, my movementdisorder specialist helped me
find some of the specific care Ineeded by referring me to
various specialists likephysical and speech therapy,
sleep specialist and anutritionist, and I was
fortunate and made many friendsin those areas, and they
provided me with all kinds ofinformation on their experiences
(33:05):
, which I've included in theguide as well.
So I want to mention theimportance of exercise in a
possible and include a certifiedpersonal trainer with
experience in Parkinson's aspart of your care team.
And one of the most importantthings I learned when talking to
the specialist was when I wasdeveloping the guide is that
many people with Parkinson'sdon't take advantage of the
(33:27):
services they provide, andthat's why I felt compelled to
put this resource guide together, because, whether you're newly
diagnosed or you're confused orfrightened of what's ahead and
what's next and you're not surewhat to do, or your caregiver is
looking to provide you with thebest care, or if you're a
person living with Parkinson'slooking to improve their quality
(33:49):
of life, hopefully the resourceguide will get you the right
resources so that you can say,oh, that's what physical
therapists do and here's why Ineed to go see one.
Hopefully, the resource guideis going to be a tool to get you
the best care you need so thatyou live your best quality of
life, meaning you stay activeand engaged in the activities
and the hobbies you enjoy.
(34:10):
Okay, so what's inside theresource guide?
Now, as I mentioned, it's yourroadmap for creating a care team
that truly works for you, andthe guide is you want to
personalize it to get the bestpossible care for your specific
needs.
So here's what's inside theresource guide.
Chapter 1 is why a strong careteam matters, and you'll learn
the benefits of a care team andidentify your specific care
(34:33):
needs.
Chapter 2 is understanding theroles in the care team and
identify your specific careneeds.
Chapter two is understandingthe roles in the care team.
It discusses the role of themovement disorder specialist,
what physical, occupational andspeech therapists do, mental
health professionals and so onand so forth.
Chapter three is building andmaintaining a cohesive
Parkinson's care team.
So this chapter is going toprovide some specific questions
(34:54):
to help you identify and selectthe best specialist for you.
So it has questions to help youselect a movement disorder
specialist, physical andoccupational and speech
therapist, and it's importantthat you have a good rapport and
connection with your specialistso that they get the best care
for you that you can possiblyget.
(35:16):
And the chapter also has youevaluate your team needs and
tips for building trust andcommunication within your team.
And then chapter four coverscreating the core plan and it
outlines the smart framework forsetting goals, tools for
tracking progress andcoordinating your goals across
your care team.
Chapter five discussesfinancial planning and
(35:39):
understanding the cost ofParkinson's care, and it gives
you some tips for managing costsand navigating insurance,
finding affordable care andplanning for the future with
wills, trust and funds andcharitable contributions.
And then chapter six is allabout staying organized and it
provides a lot of recommendedtools to help keep you and your
(36:00):
team organized within theprocess.
Chapter 7 is going to help youovercome challenges and provides
a lot of the different commonchallenges that you may
experience, and then it givesyou strategies for overcoming
them and includes a section onstaying optimistic, resilient,
on your Parkinson's journey.
And then, finally, chapter 8provides a list of resources
(36:22):
that you can reference and useto help you build the best
possible care team.
So let's provide an overview onhow to use the supplemental
workbook just to get the mostout of the resource guide.
The workbook is really more thanjust a companion document.
It's a practical tool that'sgoing to help you take action,
and it includes care teamplanning sheets and that helps
(36:43):
you map out your doctor,specialist and caregivers and
how to evaluate your care teamIn terms of creating your plan.
There's a section for settingspecific goals for the team, how
you're going to track yourprogress.
There's a section for settingspecific goals for the team, how
you're going to track yourprogress and identifying your
short and long-term goals andhow you're going to maintain a
good quality of life.
There's a financial planningworkbook to help with financial
(37:07):
and insurance needs, a sectionon staying organized and
defining roles andresponsibilities within the team
and then anticipatingchallenges and developing plans
to overcome the challenges.
And then, finally, there is amedication tracking tool to help
you prepare for your doctorvisits.
Okay, chris, this sounds nice,but why do I need this guide?
(37:28):
No, that's a good question.
Ask yourself this question haveyou ever felt overwhelmed by
Parkinson's, struggled to findthe right doctors or specialists
, or just wish you had a clearplan to manage your care?
Now, if you answered yes, thenthis guide is for you.
It's for anyone living withParkinson's, their caregivers
and family members who want tobe proactive about their
(37:50):
personal care their personalcare Now.
Remember, parkinson's has animpact on the entire family, so
don't wait until symptoms,progress or challenges arise.
Build your care team now sothat you're prepared for
whatever comes down the road,and building your Parkinson's
care team resource guide andworkbook is your action plan to
take control of your Parkinson'sjourney.
(38:11):
Now to get your copy again,visit liveparkinsonscom and on
the homepage under the missionstatement, you'll see a new
Parkinson's care team guide.
Just click on the guide and thebutton to access the document,
or visit my co-fee page atco-feecom.
Slash libparkinsons and visitthe shop, and I'll leave links
(38:32):
in the podcast description.
Now I do have to charge again anominal fee for these documents
because of the research andproduction cost, and I mentioned
earlier what the funds will beused for supporting the podcast,
the website and developing newmaterials and donations to
Parkinson's foundations.
(38:52):
So the intent is to help otherslive their best life with
Parkinson's.
So also don't forget tosubscribe to the free monthly
newsletter on liveparkinsonscom.
And thank you for listening anduntil next time, stay healthy,
stay strong, stay informed andkeep moving forward.
And remember live your bestlife with Parkinson's.
Hello, welcome to Live Parkinson's Live an
Exceptional Life.
I'm your host, chrisKustenbotter, and I've been
living with Parkinson's for 15years.
This podcast is all abouthelping you navigate and live a
great quality of life withParkinson's through sharing the
latest research, personalexperiences and actionable
strategies to help you thrive.
Today's topic is building aParkinson's care team the key to
(00:34):
better care and quality of life.
I remember a conversation I hadwith a man named Tom.
Tom had been living withParkinson's for about five years
, but he said he was feelinglonely and fighting an uphill
battle.
He said his doctor prescribedmedications, but he said he had
really not done any physical orspeech therapy, was struggling
to find nutritional advice andalso emotional support through
(00:58):
support groups.
His wife Lisa was doing herbest as his caregiver, but she
also said she was overwhelmedand exhausted.
They didn't know where to turnfor help or how to put together
the right team of professionalsto support them.
That's when I told Tom aboutthe importance of building a
Parkinson's care team a group ofmedical experts, therapists and
(01:18):
supportive people who couldwork together to help him manage
his symptoms and help take someof the stress and burden off of
the caregiving of his wife Lisa.
The care team could also helphim maintain his mobility, stay
active and engaged in socialactivities and live a great
quality of life with Parkinson's.
I told Tom that I built aParkinson's care team 12 years
(01:40):
ago and it has helped me live agreat quality of life with
Parkinson's since then.
Tom listened to my story andtook my advice seriously, and
today he has a care team thatincludes a movement disorder
specialist, physical therapist,speech therapist, occupational
therapist, a fitness trainer andnutritionist, and then he's got
family members and caregivers,and also now he attends a
(02:03):
Parkinson's support group.
He said he and Lisa are nolonger alone on this journey and
the difference in how he'sliving his life is incredible.
That's exactly what we'retalking about today how to build
the right care team so you getthe comprehensive care you need
to live your best life withParkinson's.
So let's look at why aParkinson's care team matters.
(02:23):
So you may be thinking toyourself so, Chris, why is a
care team so important?
You said you had developed one.
Well, that is a great question,because my guess is that not a
lot of people with Parkinson'shave a care team, and the reason
that they're so important andbeneficial is because
Parkinson's affects more thanjust our movement.
It impacts our speech, ourmental health, digestion, sleep,
(02:46):
mood, all of those things.
And having a single doctor isn'tenough.
You need a team of experts whowork together to address each of
the aspects of your health, aswell as a group of caregivers to
help you manage your care andlive your best life.
This way, you have peopleexperienced in a broad range of
areas that impact your care, soyou have someone that can take
(03:08):
care of your balance and yourgait.
You have someone that can helpyou with, let's say, you have
anxiety, someone to help youwith your sleep.
You can have a nutritionist.
All these people can help you.
So one of the benefits ofhaving a strong care team help
you is that they can help youmanage your symptoms more
effectively, improve yourmobility and independence,
(03:29):
reduce your stress and thestress for caregivers as well,
and they can help you stayinformed about the latest
Parkinson's treatments andstrategies.
But how do you find the rightpeople to put together a team
that works best for you?
That's where my new Buildingyour Parkinson's Care Team
Resource Guide and SupplementalWorkbook come in.
Now I created a 35-pageBuilding your Parkinson's Care
(03:51):
Team Resource Guide and a22-page Supplemental Workbook
that was based on my experienceon building a Parkinson's care
team, as well as input from allthe different specialties on a
Parkinson's care team and theones that I've had interactions
with over the course of myParkinson's journey.
So it's a collaborative effortof personal experience and
(04:16):
working with medical and healthprofessionals to put together a
document that can help you builda Parkinson's care team to get
the best care that you canpossibly get.
So the intent was to make theprocess easy for you.
So it's really it's astep-by-step roadmap to help
guide you and help you identifykey professionals that you're
going to need, from a movementdisorder specialist, neurologist
(04:40):
, to the different types oftherapies that are out there
Physical therapy, speech andoccupational therapy.
It addresses a nutritionist,mental health professionals for
anxiety, depression and anyother type of issues that you
may have.
A fitness trainer, which a lotof people don't think about, but
we talked before about theimportance of exercise and how
(05:00):
it's one of the keys to help youmaintain your mobility and
independence.
So a certified fitness trainer,preferably one that has some
experience with Parkinson's, isvery beneficial.
And then the guide helps youcommunicate effectively with
your care team.
It helps you organize yourmedical records, appointments
and medications.
It includes how to find supportgroups and community service
(05:22):
resources.
It includes how to find supportgroups and community service
resources.
It discusses how to reducecaregiver stress and improve
communication between familymembers and your health care
providers, because sometimesthere's a disconnect between
what you think and what yourhealth care provider thinks.
It also includes a section onfinancial planning and insurance
(05:46):
, which a lot of times we don'tthink about.
But whether we're stayingindependent and living in our
house, or whether we're movingto assisted living or we need
skilled nursing, we need to beable to plan for those, and so
there's a section on financialplanning and insurance to make
sure that you're coveringyourself.
And then staying organized andovercoming challenges are part
of the plan, as well asresources to help you with the
process.
It's a soup to nuts guide onstarting from step one and
(06:10):
working through until you haveyour Parkinson's care team put
together and you can grab yourcopy.
It's available onliveparkinsonscom.
On the homepage, underneath themission, you'll see it'll say
new building your Parkinson'scare team resource guide and you
can click to get your copy.
Or you can visit my Ko-fi page,ko-ficom slash live Parkinson's
(06:32):
and it'll take you to the shopand you can get it there, and
then I'll leave links in thepodcast description.
Now I've developed a lot offree resources in the past
several years, for instance,nine balance exercises for
improving your balance withParkinson's, and we have the
free monthly newsletter.
I have a free resource guide onthere as well as a free symptom
(06:52):
tracker.
Now, unfortunately in this case, due to the time commitment and
development and production cost, I do have to charge a nominal
fee for the document, and theproceeds are going to be used to
help support the podcast, thewebsite and developing future
resources, as well as donatingto Parkinson's foundations to
help push forward Parkinson'sresearch.
All right, so let's look at thekey steps on how to build your
(07:15):
Parkinson's care team.
Now, I don't know about you,but I'm a very simple person and
I like to break things downinto smaller, simpler tasks,
especially things that are alittle bit more complex.
So that's what I decided to dowith the podcast is to take how
to build a Parkinson's care teamand we'll break it down into a
step-by-step manner.
I thought it'd be easier thatway and hopefully it's easier to
(07:37):
follow along.
So let's start off with stepone and start with your core
medical team.
I'll share my Parkinson'sdiagnosis story and then how I
came to select the doctor that Isee now and I've been seeing
him for the past 14 years andthen we'll talk about some of
the other core medical peoplethat you need on your team.
(07:57):
When I was 46, I started toexperience a tremor in my left
hand and I was dragging my legwhen I walked.
We'd go for a walk in theevening and my wife would.
And I was dragging my leg whenI walked.
We'd go for a walk in theevening and my wife would say
you're dragging your leg.
So we decided to see aneurologist to see if they could
diagnose what the problem is.
So, after the initial wait toget an appointment with the
neurologist, I was able to getan appointment with Dr R and DrR
(08:21):
really listened to me explainmy symptoms and I also told him
what an emergency room doctortold me when I was on vacation.
When my hands started shaking,my wife said You're going to the
emergency room and I said no,I'm not.
She said yes, you are, and Isaid no, I'm not.
Well, a half hour later I'msitting in the emergency room
and they told me that it'sprobably stress.
So he did an examination andsaid Well, sometimes there is
(08:48):
underlying stress which cancause shaking.
He said let's see if we canrule that out.
So he prescribed somemedication and said that let's
have you try some meditation andmindfulness exercises as well.
So we scheduled a follow-upappointment in six weeks to see
if that solved the issue or ifanything else needed to be done.
(09:10):
Well, during that six-weekperiod my leg dragging was
getting worse and so was mytremor.
So I called the office and Dr Rsaid come in.
And so I went in and he saidwell, it looks like we've ruled
out stress and anxiety.
Maybe you have a nerveconduction issue.
So we scheduled a nerveconduction test to see if this
was the issue.
Now, while the nerve conductiontest was fun and all well, no,
(09:33):
not really.
The good thing is the resultswere negative in terms of having
a nerve conduction problem.
So then Dr Ars decided to try aParkinson's medication at a low
dose, and after the second daythe tremor had almost stopped
and Dr R said he believed that Ihad Parkinson's and said that
(09:53):
he suggested that I see amovement disorder specialist
Because they have expertise inmanaging Parkinson's patients.
He suggested that I go to theUniversity of Maryland Neurology
Group.
He said that's where he went tomedical school and they have an
excellent Parkinson's program.
So he referred me to theUniversity of Maryland Neurology
and I've been a patient therefor the past 15 years and I have
(10:16):
to say I've had great qualityof care and very pleased with my
movement disorder specialistand my quality of life after 15
years with Parkinson's.
Not only did I receive greatcare from the movement disorder
specialist, but going down to aresearch center like the
University of Maryland also gaveme the opportunity to
participate in a number ofclinical studies, and the most
(10:39):
memorable study for me was adouble-blind placebo-controlled
study that followed by a 12-weekopen-label study that was for
an inhaled form of dopamine, andthe benefit was I had the
opportunity to work closely withthe movement disorder
specialist, the clinical staffand I even got to work with the
pulmonary group because they hadto test if there was any
(11:01):
pulmonary issues with the drug,and it was a great learning
experience in the drugdevelopment process and the
study I was in.
The drug ended up beingreviewed and approved by the FDA
for market about 12 to 18months after I completed the
study.
So I felt good that I was ableto participate and help bring a
beneficial drug to the market.
(11:21):
All right.
So one of the questions I getasked a lot is well, why should
you see a movement disorderspecialist?
Who are they and how are theydifferent from a general
neurologist?
Well, first, it's important tonote that movement disorder
specialists are neurologists,but they have additional
training in diagnosing andtreating conditions that affect
movement, like Parkinson'sdystonia.
(11:43):
Where they're different fromgeneral neurologists is first,
they get more specializedtraining.
So after they complete theirneurology residency, the
movement disorder specialiststypically spend an additional
one to two years doing afellowship training focused
specifically on movementdisorders, and this extra
training is going to equip themwith in-depth knowledge of their
(12:05):
conditions and the treatmentsthat are available.
And then, second, is theirexpertise in complex cases.
Movement disorder specialistsare skilled at managing
challenging cases.
They can fine-tune yourmedications and they can even
help address a lot of the sideeffects that you either see from
Parkinson's or some of themedications.
They're also familiar withadvanced therapies like deep
(12:28):
brain stimulation surgery, aswell as the new focused
ultrasound.
And then, third, is their focuson their movement disorders.
While general neurology tendsto treat a wide range of
conditions like epilepsy,multiple sclerosis, they see
Parkinson's patients.
Movement disorder specialistsdedicate their practice to
(12:49):
movement disorders and thatallows them to stay updated on
the latest research andtreatments that are available.
So they usually attend a lot oflike the World Parkinson's
Conference and a number of otherconferences where they can
learn from other movementdisorder specialists as well as
from corporate and governmentalagencies.
(13:09):
And then, finally, you get acomprehensive care with a
movement disorder specialist,because they often work with
multidisciplinary teams likephysical, speech and
occupational therapy.
They often have connectionswith behavioral health.
Maybe some of them haveconnections to nutritionists, so
(13:31):
they're able to refer you tothese particular specialties to
help give you a holisticapproach to your care and to
address both your motor andnon-motor symptoms.
Okay, so now that we understandhow a movement disorder
specialist is different than ageneral neurologist, what are
some of the benefits of seeing amovement disorder specialist?
(13:51):
Well, first is they can providean accurate diagnosis.
Movement disorder specialistsare skilled in distinguishing
Parkinson's from similarconditions and in ensuring a
precise diagnosis, becausenobody wants to be told, hey,
you have Parkinson's, and thentwo or three years later you
find out, no, I don't haveParkinson's.
Secondly, they optimize yourtreatment plans.
(14:14):
They have expertise in managingboth your motor and non-motor
symptoms, and they can fine-tuneyour medications and address
side effects.
According to the article whatDoes a Movement Disorder
Specialist Do?
By the American Parkinson'sDisease Association, movement
disorder specialists do by theAmerican Parkinson's Disease
Association.
And then third is the access toadvanced therapies.
(14:36):
Movement disorder specialistsare often involved in clinical
research and are aware of thelatest treatments and
technologies they provide, sothey give you comprehensive care
.
And again, it's by workingacross our multidisciplinary
teams, including physical,speech and occupational therapy,
sleep doctors, mental health.
And if you want to learn more,I wrote an article on
liveparkinsonscom titled FiveAuthentic Benefits of Seeing a
(14:59):
Movement Disorder Specialist.
And again, if you go toliveparkinsonscom and look under
the blog section, you'll beable to see the article that I
wrote.
Some interesting data publishedby the Michael J Fox Foundation
looked at a study using 2019Medicare data, and what the
study revealed was that only 9%of people with Parkinson's in
(15:20):
the US received care from amovement disorder specialist,
despite evidence showing thatspecialized care improves your
quality of life.
So patients under the care of amovement disorder specialist
are more likely to receivepersonalized treatment plans and
better symptom management.
So that's why I personally andhighly recommend seeing a
(15:41):
movement disorder specialist.
Now, does that mean you won'tget good quality care seeing a
general neurologist?
No, absolutely not.
General neurologists canprovide great quality of care as
well.
Sometimes there are limitingfactors to seeing a movement
disorder specialist.
So, for instance, where youlive.
(16:02):
You might live in a rural areawhere there's not great access
to movement disorder specialists, so you see a neurologist.
Now I'm not insinuating thatyou get less care with a general
neurologist, but I still dorecommend seeing a movement
disorder specialist because ofthe benefits that I discussed.
All right now, movement disorderspecialists are just one part
of your medical care team.
Other key players on your corecare team is your primary care
(16:25):
physician and they're going towork in conjunction with your
movement disorder specialist toprovide ongoing care for you.
And then physical therapyPhysical therapists can provide
plans to help you with yourbalance, your gait, your
flexibility, pain and now.
I've personally visited andconducted physical therapy
training three times a week forfour to six weeks during the
(16:48):
course of my 15-year journeywith Parkinson's, and one of the
things I really liked is theydeveloped a plan to help me
improve my balance and my gaitbecause I was dragging my left
leg when I was walking.
Now, the nice thing about theplans that the physical
therapists put together are thatthey can be done both in office
and at home, and preferablythey want you to do them at home
(17:08):
as well, to reinforce whatyou're doing in the office and
you're actually going to helpreach your goal a lot faster as
well.
Now I will tell you that thereare no gentle stroll through the
park exercises.
So when you go to physicaltherapy, they push you to
improve, but they also know whatyour limitations are and how
far to push.
Now, all three times I visiteda physical therapist, I was able
(17:30):
to improve from where I was atbaseline, and so if you're
having mobility, balance or gaitissues, don't be afraid to ask
your doctor for a referral tosee a physical therapist.
Most of the time they'd be morethan happy to send you there
because they want to see youimprove in your mobility and
your gait.
So if you feel like you'rehaving trouble, just say hey,
(17:51):
can you refer me to a physicaltherapist, and then they'll
contact you and you go in andthey'll do an assessment and
then put a plan together for you.
All right, in addition to thecore medical team, there are
other specialist supportpersonnel who can play a key
role in your care.
Now these would include speechtherapy, and speech therapies
(18:15):
not only can help you with asoft speech, but they can also
help you with address swallowingissues, because a lot of times
we know, as Parkinson'sprogresses, people start having
some difficulty with swallowingissues.
I've personally visited aspeech therapist on two
different occasions.
Gabrielle, because my friendswere and family were telling me
I was hard to hear and that Ineeded to speak up.
Now, of course, I told themthey probably had a hearing
(18:38):
problem, and Gabrielle waswonderful and helped me not only
to improve my volume, but shealso taught me to be able to
project and that way peoplecould understand what I was
saying a lot better.
Now my friends and family saidthey definitely saw and heard an
improvement after I saw thespeech therapist.
So I highly recommend speechtherapy because it can
(19:01):
definitely help you address softvoice and any type of
swallowing problems that you mayhave.
And then next up is occupationaltherapy, and they can help you
with daily tasks by giving youspecific exercises to work on,
and they can even do home visits.
You know, you can say call upand say can you.
I'd like an occupationaltherapist to come and assess my
(19:24):
home and ensure things are safearound your house.
They may make recommendationsfor adding things like grab bars
or more lightened hallways,removing loose rugs, those type
of things.
Now I have seen a occupationaltherapist and the reason I went
was to help me with my finemotor skills, especially in my
hand with the tremor.
(19:45):
I had seen a drastic reductionin my fine motor skills and it
was really becoming difficult todo some of the tasks that I
needed to do, as well as it wasreally hard to participate in
two of my favorite hobbies,which were playing the guitar
and fly fishing and fly tying.
So fly tying requires a lot of,you know, fine motor skills,
(20:05):
even just to put the hook in thevice, and so I was, you know,
having trouble with that, andthe occupational therapist gave
me specific exercises that Icould do daily to help me
improve my fine motor skills,and one of the things they also
recommended was using a weightedglove to help with the tremor
and reduce the tremor and makeit easier to complete the things
(20:26):
that I wanted to complete.
Now, another specialty area thatis often overlooked is mental
health specialist.
Now, I know there's often astigma of seeing a mental health
specialist because people oftenthink that, well, there's me,
think that I'm have a mentalhealth problem, or you know that
I'm crazy, you know but it isimportant to keep in mind that a
large percentage of people withParkinson's experience anxiety
(20:49):
and depression.
Now, I have no issues tellingpeople that I went to see a
mental health professionalbecause I was having anxiety and
panic attacks which wererelated to the Parkinson's, and
so they gave me techniques towork on, and one of those
techniques was cognitivebehavioral therapy.
So I have very few problemswith anxiety anymore or panic,
(21:14):
and so I still use cognitivebehavioral therapy today to help
manage issues with anxiety orstress, and if you want to learn
more about it, you can listento my podcast that's entitled
Parkinson's and Anxiety howCognitive Behavioral Therapy Can
Help you Take Back Control.
Now, I've always believed youneed to do what's best for you
(21:36):
and not worry about what othersthink, so if you're experiencing
some issues, please consult amental health specialist.
They can really help you out.
Another specialist to consideras well is a sleep disorder
specialist.
Another specialist to consideras well is a sleep disorder
specialist and, as myParkinson's symptoms have
(21:57):
progressed.
One of the major non-motorsymptoms that I have issues with
is the effect on my quality ofsleep sleep issues.
Now I have no problem fallingasleep.
It's I often wake up severaltimes to use the restroom and
then have trouble falling backto sleep.
Or I start waking up at 2 amand then by most days I'm out of
bed between 2.30 and 3.15,regardless of what time I go to
(22:17):
bed.
So if I stay up till 11 pm, I'mstill waking up between 2 and 3
.
So that only gives me aboutthree to four hours of sleep and
you do that over a number ofdays and it really does begin to
take a toll on you All.
Right now, one of the benefitsof the sleep specialist and I've
seen one of those as well, so Ipretty much run the whole
gambit of seeing everybody onthe Parkinson's care team but
(22:39):
she gave me some sleep hygienetips and she also made some
adjustments to my CPAP machinefor sleep apnea and they
definitely have helped.
So after seeing a sleepspecialist and implementing the
recommendations, I actually dofeel more refreshed when I wake
up in the morning and don'texperience as much sleepiness
and fatigue as I did in the past.
Finally, last but not least, isa nutritionist or dietitian,
(23:04):
and they can help you evaluateyour current diet and make
recommendations to help you tohealth your diet and ensure
you're getting the appropriateamount of macronutrients the
proteins, fats and carbohydrates, as well as micronutrients the
proteins, fats and carbohydrates, as well as micronutrients,
your vitamins, minerals andantioxidants.
And I met with a nutritionistas well and she put together a
(23:24):
recommended nutritional planbased on the foods I like and
that would help me on myParkinson's journey.
Okay, well, your core medicalteam is the driver for managing
most of your Parkinson's motorand non-motor symptoms and your
overall quality of life.
It's important to note thatParkinson's, again, isn't just
physical.
It impacts your mood, yourcognitive function and your
(23:45):
quality of life.
A specialized therapist orcounselor can help you address
the non-motor symptoms that areimpacting your daily life.
So it's important to involvecaregivers and family members
into your care plan Spouses,children and friends who can
provide the emotional supportand the practical support like
getting your medications ordriving you to appointments or
(24:08):
sitting in the visit when you goto the doctor, taking notes so
you don't miss anything that thedoctor might be stressing
during the visit.
They can drive you toappointments.
They can help you fill out yourinsurance paperwork, they can
help you with financial planningor just any of the daily
finances or daily tasks that youneed to do.
So it's important to have astrong network of friends and
(24:31):
family that are there to supportyou so that your primary
caregiver, whether it's a spouseor whoever it happens to be,
doesn't experience burnout andfrustration.
Now, as a personal example, Idon't drive long distances
anymore because I get fatiguedand I don't want to cause an
accident and kill somebody else.
(24:51):
So when I'm visiting my familywhere I grew up, which is about
two hours from where I live, mybrother or a friend usually
drive down to my house and pickme up and drive me back up, and
a lot of times my wife, mary andI will meet them somewhere
halfway between.
And now I hate not being ableto drive myself long distances
(25:14):
and I feel like a burden on myfamily and friends.
It's the best option for me andit helps keep me from driving
off the road after being on theroad for a long time.
Also, they said that if therules were reversed, I would do
the same thing for them, whichis true.
Now, another area to consider isrespite caregivers.
Now, another area to consideris respite caregivers, and they
(25:36):
can assist your family membersand help you reduce the burden
and potential burnout forcaregivers.
So remember, being a caregiveris tough, but support is
available to take advantage ofso that you can get all the help
and support you need.
And so respite caregiversthey'll come in and I'll be with
you while your spouse orcaregiver goes and gets some you
(25:59):
know personal time to do whatthey want to do.
So I guess my public serviceannouncement is you know, if
you're a caregiver, don't try todo it alone.
The next step is to connect withcommunity resources.
But you know, make sure thatyou include help as part of your
care team, because you need totake some time for yourself as
(26:20):
well.
And finally, you want toconnect with community resources
.
So what does this mean?
Well, you can identify andattend Parkinson's support
groups to help you stay activelyengaged, because one of the
things you don't want to do isbecome socially isolated,
because then that just tends tospiral down into the black hole
(26:41):
and you become lonely and itjust goes on from there.
So one of the benefits of beingin a Parkinson's support group
is you get to hear otherpeople's stories and how they
overcome their challenges,especially the ones that come
with you know Parkinson's.
And then many support groupsalso have activities that you
can get involved in, likewhether it's a bus trip or, you
(27:05):
know, painting day, or maybeit's something with music dance.
So there's a lot of differentactivities that support groups
have available and other supportgroup resources besides
in-person you can have.
They have their differentonline communities, like.
There's a Facebook, severalFacebook communities that you
can join and participate in.
(27:26):
There's Reddit and other placeson the internet and you can
learn from others in an onlineformat.
So if you don't like to go outand interact, they're available
there as well.
And then, finally, look forlocal programs, which are often
supported by grants and are freeto use, and consider
participating in local exerciseprograms like Rock Steady Boxing
(27:49):
, or I teach a weekly Pedalingfor Parkinson's class, which is
sponsored by the Davis PhinneyFoundation.
There's also a dance, yoga andtai chi classes that you can
find locally to help you withyour balance, flexibility and
gait.
So consider surroundingyourself with people who
understand your journey and itreally can make a big difference
(28:10):
in your quality of life.
So visit the Parkinson'sFoundation website and they have
a support group finder to helpyou find the resources in your
area.
Now, another key piece ofbuilding your care team is
reviewing your insurancecoverage and finances and
developing a financial plan.
Now I've included a unit in theBuilding your Parkinson's Care
(28:32):
Team Resource Guide and afillable worksheet in the
workbook.
So staying organized andovercoming challenges is another
key piece of that.
So make sure that you considerfinances and insurance, because
that's going to be one of thekey drivers going down the road
as well.
In addition, as a team, youneed to figure out how you're
(28:53):
staying organized.
Are you going to communicateover email, phone, in person,
through letters?
There's all kinds of differentsites out there that you can
almost do like a projectmanagement.
There's one called ClickUpwhere everybody has tasks and
you can put in the dates andtimes and things like that when
they're due.
So staying organized and thenovercoming challenges is another
(29:16):
key piece of the puzzle, andI've included sections on these
two topics, including some ofthe websites and apps that you
can use for communication,tracking and organization, and
then how to overcome challenges.
Other tools that can be used tohelp you and your care team be
successful are you know asymptom tracker which you can
(29:36):
use to track and monitor yoursymptoms, both motor and
non-motor symptoms, and in termsof the type of symptom, the
severity, the time of day, howbothersome it is for you, and
you can share this with yourdoctor and that can help them
get a picture of when you'rehaving the most difficulty
(29:58):
throughout the day and they canmake medication adjustments to
help you with that.
In terms of the symptom tracker, if you visit liveparkinsonscom
, there's a free symptom trackeron there as well that you can
use, and another key area totrack it is your list of current
medications and there's a freemedication tracker in the
resource guide for voting yourParkinson's care team.
(30:20):
So you list your medications,the dosage, the color, all that,
so when you go to the doctoryou can have a list all ready to
go and that way they make surethat the medications you're
taking are the ones that theyhave in your records as well.
And, finally, if you need tokeep a medical notebook to write
down any key information, likeyour insurance information,
(30:41):
notes from your doctor, anycorrespondence with the doctor
you receive in terms of clinicalsummary notes from your visit,
notes and requests you sent toyour doctor, and your next steps
and action plan.
Now, remember you don't have todo it all at once.
So start with one or twoprofessionals, build your care
team over time.
The key is just to start.
(31:03):
You know, as the Indian proverbused to state, that the journey
of a thousand miles begins witha single footstep, and that's
so true.
So realize that it takes alittle bit of time to develop a
care team, so it's not going tobe perfect.
So if we at least get startedand we're making progress, we
(31:39):
can make adjustments.
But if we don't start inparalyzing ourselves because of,
well, I need to plan more, Ineed to do some more research,
then you're not going to get thecomprehensive care that you
need.
So, as we wrap up today'sepisode, I wanted to leave you
with one key takeaway, andthat's you don't have to face
Parkinson's alone.
The right care team can be thedifference between just managing
(32:02):
your symptoms and trulythriving with Parkinson's.
So having the right doctors,therapists, caregivers and
support network in place isgoing to allow you to stay
active, independent and incontrol of your health.
And that's, again, that's why Icreated the Building your
Parkinson's Care Team ResourceGuide and Supplemental Workbook.
It's to give you a clear,step-by-step plan to assemble
(32:24):
the support system you need tolive your best life.
And again, it's based on my ownpersonal experiences living with
Parkinson's and, believe me,I've had struggles along the way
because I wasn't sure where toturn when issues arose.
So the first three years beforeI had a Parkinson's care team,
I was lost in the desert myselfbecause I'm thinking where do I
(32:45):
go to get all these resources?
And so, luckily, my movementdisorder specialist helped me
find some of the specific care Ineeded by referring me to
various specialists likephysical and speech therapy,
sleep specialist and anutritionist, and I was
fortunate and made many friendsin those areas, and they
provided me with all kinds ofinformation on their experiences
(33:05):
, which I've included in theguide as well.
So I want to mention theimportance of exercise in a
possible and include a certifiedpersonal trainer with
experience in Parkinson's aspart of your care team.
And one of the most importantthings I learned when talking to
the specialist was when I wasdeveloping the guide is that
many people with Parkinson'sdon't take advantage of the
(33:27):
services they provide, andthat's why I felt compelled to
put this resource guide together, because, whether you're newly
diagnosed or you're confused orfrightened of what's ahead and
what's next and you're not surewhat to do, or your caregiver is
looking to provide you with thebest care, or if you're a
person living with Parkinson'slooking to improve their quality
(33:49):
of life, hopefully the resourceguide will get you the right
resources so that you can say,oh, that's what physical
therapists do and here's why Ineed to go see one.
Hopefully, the resource guideis going to be a tool to get you
the best care you need so thatyou live your best quality of
life, meaning you stay activeand engaged in the activities
and the hobbies you enjoy.
(34:10):
Okay, so what's inside theresource guide?
Now, as I mentioned, it's yourroadmap for creating a care team
that truly works for you, andthe guide is you want to
personalize it to get the bestpossible care for your specific
needs.
So here's what's inside theresource guide.
Chapter 1 is why a strong careteam matters, and you'll learn
the benefits of a care team andidentify your specific care
(34:33):
needs.
Chapter 2 is understanding theroles in the care team and
identify your specific careneeds.
Chapter two is understandingthe roles in the care team.
It discusses the role of themovement disorder specialist,
what physical, occupational andspeech therapists do, mental
health professionals and so onand so forth.
Chapter three is building andmaintaining a cohesive
Parkinson's care team.
So this chapter is going toprovide some specific questions
(34:54):
to help you identify and selectthe best specialist for you.
So it has questions to help youselect a movement disorder
specialist, physical andoccupational and speech
therapist, and it's importantthat you have a good rapport and
connection with your specialistso that they get the best care
for you that you can possiblyget.
(35:16):
And the chapter also has youevaluate your team needs and
tips for building trust andcommunication within your team.
And then chapter four coverscreating the core plan and it
outlines the smart framework forsetting goals, tools for
tracking progress andcoordinating your goals across
your care team.
Chapter five discussesfinancial planning and
(35:39):
understanding the cost ofParkinson's care, and it gives
you some tips for managing costsand navigating insurance,
finding affordable care andplanning for the future with
wills, trust and funds andcharitable contributions.
And then chapter six is allabout staying organized and it
provides a lot of recommendedtools to help keep you and your
(36:00):
team organized within theprocess.
Chapter 7 is going to help youovercome challenges and provides
a lot of the different commonchallenges that you may
experience, and then it givesyou strategies for overcoming
them and includes a section onstaying optimistic, resilient,
on your Parkinson's journey.
And then, finally, chapter 8provides a list of resources
(36:22):
that you can reference and useto help you build the best
possible care team.
So let's provide an overview onhow to use the supplemental
workbook just to get the mostout of the resource guide.
The workbook is really more thanjust a companion document.
It's a practical tool that'sgoing to help you take action,
and it includes care teamplanning sheets and that helps
(36:43):
you map out your doctor,specialist and caregivers and
how to evaluate your care teamIn terms of creating your plan.
There's a section for settingspecific goals for the team, how
you're going to track yourprogress.
There's a section for settingspecific goals for the team, how
you're going to track yourprogress and identifying your
short and long-term goals andhow you're going to maintain a
good quality of life.
There's a financial planningworkbook to help with financial
(37:07):
and insurance needs, a sectionon staying organized and
defining roles andresponsibilities within the team
and then anticipatingchallenges and developing plans
to overcome the challenges.
And then, finally, there is amedication tracking tool to help
you prepare for your doctorvisits.
Okay, chris, this sounds nice,but why do I need this guide?
(37:28):
No, that's a good question.
Ask yourself this question haveyou ever felt overwhelmed by
Parkinson's, struggled to findthe right doctors or specialists
, or just wish you had a clearplan to manage your care?
Now, if you answered yes, thenthis guide is for you.
It's for anyone living withParkinson's, their caregivers
and family members who want tobe proactive about their
(37:50):
personal care their personalcare Now.
Remember, parkinson's has animpact on the entire family, so
don't wait until symptoms,progress or challenges arise.
Build your care team now sothat you're prepared for
whatever comes down the road,and building your Parkinson's
care team resource guide andworkbook is your action plan to
take control of your Parkinson'sjourney.
(38:11):
Now to get your copy again,visit liveparkinsonscom and on
the homepage under the missionstatement, you'll see a new
Parkinson's care team guide.
Just click on the guide and thebutton to access the document,
or visit my co-fee page atco-feecom.
Slash libparkinsons and visitthe shop, and I'll leave links
(38:32):
in the podcast description.
Now I do have to charge again anominal fee for these documents
because of the research andproduction cost, and I mentioned
earlier what the funds will beused for supporting the podcast,
the website and developing newmaterials and donations to
Parkinson's foundations.
(38:52):
So the intent is to help otherslive their best life with
Parkinson's.
So also don't forget tosubscribe to the free monthly
newsletter on liveparkinsonscom.
And thank you for listening anduntil next time, stay healthy,
stay strong, stay informed andkeep moving forward.
And remember live your bestlife with Parkinson's.
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