November 13, 2024 • 8 mins
Special Interview with John L. Lehr, President & CEO of theParkinson’s Foundation & Carla Velastegui, a Parkinson’s Care Partner
Each November, the Parkinson's Foundation recognizes National Family Caregivers Month as an important time to celebrate and honor the many contributions of the 65 million Americans caring for a loved one living with a chronic condition like Parkinson's disease (PD). This year, more than ever, the focus is care partner burnout as a special effort is made to encourage care partners to find time to care for themselves too.
We have a special conversation with two unique experts. John L. Lehr is the President and CEO of the non-profit Parkinson’s Foundation, and Carla Velastegui, a healthcare technologist and a care partner for her mother, who was diagnosed with Young-Onset Parkinson’s disease (YOPD) in 2010. Based in Toronto, she is a member of the Parkinson’s Foundation People with Parkinson's Advisory Council, a group of dedicated people in the Parkinson’s community who advise and collaborate with the organization on a volunteer basis. WHAT YOU’LL LEARN ABOUT PD & THE NEEDS OF CAREGIVERS:
Special resources for people who are taking care of people with PD, including new resources for the Spanish-speaking communityThe challenges of taking care of someone with a progressive diseaseEssential tips to prevent care partner burnout, which can affect anyone caring for someone with PD and other chronic diseasesInfo about the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (473-4636) for answers to PD care questions in English and Spanish, and the Foundation’s complete library of online resources
Become a supporter of this podcast: https://www.spreaker.com/podcast/late-night-health-radio--2804369/support.
Each November, the Parkinson's Foundation recognizes National Family Caregivers Month as an important time to celebrate and honor the many contributions of the 65 million Americans caring for a loved one living with a chronic condition like Parkinson's disease (PD). This year, more than ever, the focus is care partner burnout as a special effort is made to encourage care partners to find time to care for themselves too.
We have a special conversation with two unique experts. John L. Lehr is the President and CEO of the non-profit Parkinson’s Foundation, and Carla Velastegui, a healthcare technologist and a care partner for her mother, who was diagnosed with Young-Onset Parkinson’s disease (YOPD) in 2010. Based in Toronto, she is a member of the Parkinson’s Foundation People with Parkinson's Advisory Council, a group of dedicated people in the Parkinson’s community who advise and collaborate with the organization on a volunteer basis. WHAT YOU’LL LEARN ABOUT PD & THE NEEDS OF CAREGIVERS:
Special resources for people who are taking care of people with PD, including new resources for the Spanish-speaking communityThe challenges of taking care of someone with a progressive diseaseEssential tips to prevent care partner burnout, which can affect anyone caring for someone with PD and other chronic diseasesInfo about the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (473-4636) for answers to PD care questions in English and Spanish, and the Foundation’s complete library of online resources
Become a supporter of this podcast: https://www.spreaker.com/podcast/late-night-health-radio--2804369/support.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
This little special edition of Late Night Health. I'm Mark Allen.
We're in the middle of Caregivers Month and we're gonna
find out more about that and the Parkinson's Foundation with
John Lear, who's the President CEO of the Parkinson's Foundation,
and Carla and I gonna do my best on pronouncing
(00:26):
your name. Bala, Steggi, Stegi close velostigee. All right, I'm
going to call you Carla. Carla, you're a caregiver and
a part care partner for your mom who is diagnosed
with Parkinson's in twenty ten. Is it important for everybody
(00:49):
to understand what caregivers go through in caring for their
loved ones.
Speaker 2 (00:58):
Absolutely, so, you care partners are essential. We're providing emotional
and physical support needing that someone needs when they're managing
a chronic condition. But it's not only about supporting daily task.
We also play a huge role in ensuring the well
being of our loved one, so whether it's managing medications
to attending appointments, but also the emotional support so that
(01:22):
our loved one is not navigating a diagnosis alone, but
that they feel and they know they have a community
of support backing them up. As they're navigating Parkinson's disease.
So it's extremely I would say it's extremely important for
listeners out there to be aware about some of the
realities that we're facing.
Speaker 1 (01:43):
John, Let's talk about the Parkinson's foundation itself. I have
a very close friend who has Parkinson's. I believe my
grandfather had Parkinson's. Are we making headway in finding ways
of preventing it or curing it?
Speaker 3 (02:05):
Yeah, so we are making a lot of progress. Within
the last couple of years, we have made progress in
moving beyond just a simply clinical diagnosis of Parkinson's, and
so now we have biomarkers tests that clinicians can order
that can detect Parkinson's much earlier than previously. So you know,
(02:27):
I expect within the next couple of years we'll actually
have a blood test that will make it very simple
to diagnose people with Parkinson's disease. So that's a big
advance because it means that care can be provided earlier,
medications and exercise regiments can be developed earlier. So I
think that's a good sign. There's a lot of therapies,
(02:49):
new drugs that are in the work look coming at
Parkinson's from different angles, including genetics and stem cells, and
so there's a lot of work going on to bring
about new and better therapies for people with parkinson So
I'm excited about where we are. Certainly we're looking for
a cure and that's a big part of what we
(03:10):
do at the Parkinson's Foundation, but there's been a lot
of progress made, so it's encouraging.
Speaker 1 (03:15):
You know, Carla, I took care of my mother. She
did not have Parkinson's, but being a caregiver, and I
wasn't a full time caregiver. I was the one who
took her to doctors and made sure she was okay,
and did the finances and all of that. It was
(03:36):
an unforgiving job. Okay, do caregivers have to back off
sometimes and just take time for themselves.
Speaker 2 (03:50):
Absolutely so, Marc. As you mentioned, you know, caregiving can
be a twenty four seven responsibility sometimes and it's extremely
important for us to realize that our own will being
is just as important as the will being of the
person that we're caring for, especially when we're supporting someone
with a chronic illness, and so taking the time for
ourselves to step back, carve out those moments for self care,
(04:13):
but also being realistic about what we're able to handle.
And something that I always recommend I think it's extremely
important to remember is ask for help. We can't do
it all, and so we need to reach out to
our family, friends, or neighbors to really build that community
of support so that we're all able to ensure the
(04:34):
will being of our loved one, but also the will
being of us, the person who is caring for them.
Speaker 1 (04:41):
What about you just said, you know, asking for help.
I know that you know independent people and they come
down with Parkinson's. It's sometimes difficult to ask for help,
even hey, can you help me stand up? Can you
help me walk over there? Wherever there is? Do Parkinson's
(05:07):
patients need to understand they need help now? Yes?
Speaker 2 (05:13):
Absolutely, I would say, you know, it's I think it's
a part of human nature wanting to help people around
us and also accepting that help. And so I think
for those who are supporting a loved one with Parkinson's
or their caregivers, it's really important for us to stay
connected and reach out and offer help. So whether we're
(05:34):
running errands for them and picking up medication, we're helping
out with household towards, or even just checking in for
that emotional support of hey, how are you and how
can I step in to give you a break or
how can I step in to support you in your
day today is extremely important. And the other part that
I would say as well is raising awareness about the
(05:56):
disease and really advocating for better resources is another way
that individuals, the community and in the public is able
to help, especially for communities where language barriers exist in
accessing care or even when there's still stigma around what
Parkinson's entails. And so that's where I think organizations like
(06:18):
the Parkinson's Foundation are key, and at least for me,
you know, they have been a foundation in providing me
with resources and guidance on how I can care for
myself but also care for my mom as well as
for my mom in accessing resources in Spanish so that
she can better understand how to manage and how to
navigate this chronic illness.
Speaker 1 (06:38):
John. Are there things that the general public doesn't know
about Parkinson's?
Speaker 3 (06:46):
Yeah, I think probably first and foremost, that one million
Americans are living with Parkinson's disease and that nineteen thousand
individuals are newly diagnosed each year. I think the symptoms
like stiffness, slowness of movement. Those are well known, but
there are a lot of non motor symptoms like depression, apathy,
(07:07):
sleep issues, cognitive changes that are unknown are not well known.
So it's not just about the physical side. There's an
emotional psychological side to Parkinson's that people don't often see.
Another thing that we say all the time is that
no two people with Parkinson's will experience the same course
of disease. Some people have rapid onset of disease symptoms
(07:29):
and others will progress very slowly, so it's unpredictable and
because of that, it's challenging to manage.
Speaker 1 (07:37):
We're just about at a time. So I'm going to
ask John, where can people go for more information?
Speaker 3 (07:44):
Yes, for more information, go to our website parkinson dot org.
For information on care partners, go to parkinson dot org
slash care Partners. We also have a toll free helpline
which is one eight hundred four PD info. That's one
eight hundred and four PD info. And the good news
(08:05):
is all of our information is available in English and
in Spanish.
Speaker 1 (08:10):
That is terrific. And again the website to go to
is Parkinson's dot org slash care partners or guests have
been Carla, who takes care of her mom with who
has Parkinson's, and of course John Lear, President and CEO
of the Parkinson's Foundation. I'm Mark Allen. This is late
(08:33):
night Help.
This little special edition of Late Night Health. I'm Mark Allen.
We're in the middle of Caregivers Month and we're gonna
find out more about that and the Parkinson's Foundation with
John Lear, who's the President CEO of the Parkinson's Foundation,
and Carla and I gonna do my best on pronouncing
(00:26):
your name. Bala, Steggi, Stegi close velostigee. All right, I'm
going to call you Carla. Carla, you're a caregiver and
a part care partner for your mom who is diagnosed
with Parkinson's in twenty ten. Is it important for everybody
(00:49):
to understand what caregivers go through in caring for their
loved ones.
Speaker 2 (00:58):
Absolutely, so, you care partners are essential. We're providing emotional
and physical support needing that someone needs when they're managing
a chronic condition. But it's not only about supporting daily task.
We also play a huge role in ensuring the well
being of our loved one, so whether it's managing medications
to attending appointments, but also the emotional support so that
(01:22):
our loved one is not navigating a diagnosis alone, but
that they feel and they know they have a community
of support backing them up. As they're navigating Parkinson's disease.
So it's extremely I would say it's extremely important for
listeners out there to be aware about some of the
realities that we're facing.
Speaker 1 (01:43):
John, Let's talk about the Parkinson's foundation itself. I have
a very close friend who has Parkinson's. I believe my
grandfather had Parkinson's. Are we making headway in finding ways
of preventing it or curing it?
Speaker 3 (02:05):
Yeah, so we are making a lot of progress. Within
the last couple of years, we have made progress in
moving beyond just a simply clinical diagnosis of Parkinson's, and
so now we have biomarkers tests that clinicians can order
that can detect Parkinson's much earlier than previously. So you know,
(02:27):
I expect within the next couple of years we'll actually
have a blood test that will make it very simple
to diagnose people with Parkinson's disease. So that's a big
advance because it means that care can be provided earlier,
medications and exercise regiments can be developed earlier. So I
think that's a good sign. There's a lot of therapies,
(02:49):
new drugs that are in the work look coming at
Parkinson's from different angles, including genetics and stem cells, and
so there's a lot of work going on to bring
about new and better therapies for people with parkinson So
I'm excited about where we are. Certainly we're looking for
a cure and that's a big part of what we
(03:10):
do at the Parkinson's Foundation, but there's been a lot
of progress made, so it's encouraging.
Speaker 1 (03:15):
You know, Carla, I took care of my mother. She
did not have Parkinson's, but being a caregiver, and I
wasn't a full time caregiver. I was the one who
took her to doctors and made sure she was okay,
and did the finances and all of that. It was
(03:36):
an unforgiving job. Okay, do caregivers have to back off
sometimes and just take time for themselves.
Speaker 2 (03:50):
Absolutely so, Marc. As you mentioned, you know, caregiving can
be a twenty four seven responsibility sometimes and it's extremely
important for us to realize that our own will being
is just as important as the will being of the
person that we're caring for, especially when we're supporting someone
with a chronic illness, and so taking the time for
ourselves to step back, carve out those moments for self care,
(04:13):
but also being realistic about what we're able to handle.
And something that I always recommend I think it's extremely
important to remember is ask for help. We can't do
it all, and so we need to reach out to
our family, friends, or neighbors to really build that community
of support so that we're all able to ensure the
(04:34):
will being of our loved one, but also the will
being of us, the person who is caring for them.
Speaker 1 (04:41):
What about you just said, you know, asking for help.
I know that you know independent people and they come
down with Parkinson's. It's sometimes difficult to ask for help,
even hey, can you help me stand up? Can you
help me walk over there? Wherever there is? Do Parkinson's
(05:07):
patients need to understand they need help now? Yes?
Speaker 2 (05:13):
Absolutely, I would say, you know, it's I think it's
a part of human nature wanting to help people around
us and also accepting that help. And so I think
for those who are supporting a loved one with Parkinson's
or their caregivers, it's really important for us to stay
connected and reach out and offer help. So whether we're
(05:34):
running errands for them and picking up medication, we're helping
out with household towards, or even just checking in for
that emotional support of hey, how are you and how
can I step in to give you a break or
how can I step in to support you in your
day today is extremely important. And the other part that
I would say as well is raising awareness about the
(05:56):
disease and really advocating for better resources is another way
that individuals, the community and in the public is able
to help, especially for communities where language barriers exist in
accessing care or even when there's still stigma around what
Parkinson's entails. And so that's where I think organizations like
(06:18):
the Parkinson's Foundation are key, and at least for me,
you know, they have been a foundation in providing me
with resources and guidance on how I can care for
myself but also care for my mom as well as
for my mom in accessing resources in Spanish so that
she can better understand how to manage and how to
navigate this chronic illness.
Speaker 1 (06:38):
John. Are there things that the general public doesn't know
about Parkinson's?
Speaker 3 (06:46):
Yeah, I think probably first and foremost, that one million
Americans are living with Parkinson's disease and that nineteen thousand
individuals are newly diagnosed each year. I think the symptoms
like stiffness, slowness of movement. Those are well known, but
there are a lot of non motor symptoms like depression, apathy,
(07:07):
sleep issues, cognitive changes that are unknown are not well known.
So it's not just about the physical side. There's an
emotional psychological side to Parkinson's that people don't often see.
Another thing that we say all the time is that
no two people with Parkinson's will experience the same course
of disease. Some people have rapid onset of disease symptoms
(07:29):
and others will progress very slowly, so it's unpredictable and
because of that, it's challenging to manage.
Speaker 1 (07:37):
We're just about at a time. So I'm going to
ask John, where can people go for more information?
Speaker 3 (07:44):
Yes, for more information, go to our website parkinson dot org.
For information on care partners, go to parkinson dot org
slash care Partners. We also have a toll free helpline
which is one eight hundred four PD info. That's one
eight hundred and four PD info. And the good news
(08:05):
is all of our information is available in English and
in Spanish.
Speaker 1 (08:10):
That is terrific. And again the website to go to
is Parkinson's dot org slash care partners or guests have
been Carla, who takes care of her mom with who
has Parkinson's, and of course John Lear, President and CEO
of the Parkinson's Foundation. I'm Mark Allen. This is late
(08:33):
night Help.
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Special Summer Offer: Exclusively on Apple Podcasts, try our Dateline Premium subscription completely free for one month! With Dateline Premium, you get every episode ad-free plus exclusive bonus content.
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!