NWPF

PD Community BlogRead Blog

Feel it in the Gut: Daughters of People with Parkinson’s

Monday April 30, 2018

Débora Luiz is a full-time student and aspiring neuropsychologist. Last November, Débora and I volunteered at NWPF’s Annual Celebrate! Gala. In between silent auctions, we discovered that we both have dads with Parkinson’s: Pedro Luiz, in São José dos Campos of São Paulo state, Brazil; and Brian Camp in Everett, Washington, U.S.A.

On March 28th, we met to continue our conversation. Débora offered dynamic insight into her dad Pedro and current research on Parkinson’s. It’s worth noting that we had this exchange over tiramisu the size of my head.

 

Bette Jane Camp: BJC

Débora Luiz: DL

 

BJC: We met at the auction last fall, and you told me you want to help because of your dad.

 

DL: Yes, I am here [in Seattle] and my dad is all the way in Brazil. I felt like, ‘Well, if I’m not there to give my love to him, I can give my love to someone here who is going through the same problems.’

 

BJC: Does volunteering with people with Parkinson’s tie to what you want to [pursue]?

 

DL: Yes: to understand the disease, as well as give the [person with Parkinson’s] and their family psychological support. Because I know from experience it takes a toll on the whole family. We were not expecting the diagnosis, and it has [caused us all] suffering. So I would like to help families and people with Parkinson’s.

 

BJC: Do you have any advice or thoughts for children of people with Parkinson’s disease?

 

DL: That’s a very emotional topic—and question! (laughs) So let me recompose myself.

 

Just bring a lot of love and understanding to your dad or mom, because they didn’t ask to have this disease, [or] to be dependent on you. Believe me, they are way more unhappy that they need to depend on you.

 

And I can see the frustration in my dad’s eyes, that he needs help to take a shower, to button his shirt, to get up from a chair. My siblings have a business together and they needed legal advice. My dad worked as a lawyer for 30 years. And there he was, incapable of helping them.

 

He didn’t ask for that. He wanted to be out there, helping my siblings. But he couldn’t. So it’s just having a lot of patience, a lot of understanding.

 

BJC: What do you envision doing in the future?

 

DL: I’m still in limbo. I may become a neuropsychologist because I can both research neuroscience and practice therapy with people with neurological diseases, like Parkinson’s. I would be treating patients not only neurologically but also with the psychological and emotional support that they need.

 

BJC: What’s one of your biggest questions about Parkinson’s?

 

DL: I think it’s the two million dollar question! How [do] people develop Parkinson’s, how can we cure Parkinson’s? That’s my main curiosity right now. And that’s how I’ve learned about Parkinson’s potentially starting in a person’s gut[1]. That really intrigues me.

 

In research about the patient’s gut, it’s all about nutrition[2]. I think [Parkinson’s] increased in the last 50-100 years, [with major] changes to our food chain. On another hand, we need to understand that this disease may not have been diagnosed as often as today.

 

Still, the way people eat has changed a lot. That’s why it’s very intriguing to me, that Parkinson’s can start in people’s gut.

 

BJC: We’ve also talked about Brazilian and American diets. How do they compare?

 

DL: Well, my dad’s diet is carbs. Then we eat a lot of red meat. Brazilians have a lot of barbecue, from funerals to weddings—it doesn’t matter. Our football team won? Barbecue. Our football team lost? Barbecue. This is how we roll (laughs).

 

Red meat takes forever to digest—and a lot of hormones have been added to cattle nowadays, because there’s just too many people to feed all over the world. Here in Seattle, people are more concerned about their health, right? But both the U.S. and Brazil are in the top five worldwide for red meat consumption, and heart disease is the leading cause of death in America.

 

If you look at Asian countries, like Japan, who have totally different nutrition habits than western countries, their numbers of Parkinson’s patients are way, way less. The [article by Minato, et al] discussed how good bacteria of our guts are eliminated by poor nutrition. This is [suggested as a] link to Parkinson’s disease. People with Parkinson’s have way less of this good bacteria. In Japan, the whole population in general has much more of this good bacteria.

 

BJC: So there’s the cultural diet. What about the social emotional relationships we have with our aging populations?

 

DL: For one, the United States is an individualistic culture. Brazil is collectivist. So my dad is at home with my family, and they are all there providing support. They are loving on him all the time. As opposed to here, a lot of senior people end up in [senior] housing.

 

North Americans are already used to being individualistic. It’s usually not something new when they are elderly. But it is sad for me. Because I am from a different culture, and I’m not used to it.

 

BJC: It…(pauses). It bums me out (laughs). Especially as a daughter of someone with Parkinson’s, someone who is dealing with health problems that come earlier than those without a [neurodegenerative illness].

 

Aging is difficult no matter what, because we’re human, and we’re confronted with our mortality. We can put that off so long, particularly if we don’t talk about death: ‘Oh, I don’t want to see this person struggling with their health, because that just reminds me that I’m going to die.’ It creates further alienation.

 

DL: Yeah. Seeing others suffer can remind you that you can go down that road, too.

 

BJC: And it can—like with you, and with many—evoke compassion. That’s where we see the best in people.

 

DL: Yes! Goodness.

 

---

 

Direct links to the article and video described in this interview can be found here:

 

“Progression of Parkinson's disease is associated with gut dysbiosis: Two-year follow-up study”

http://doi.org/10.1371/journal.pone.0187307

 

“Webinar: ‘Gut Bacteria and Parkinson’s’”

https://www.youtube.com/watch?v=qSWTbvQGQ38

 

 

[1] Minato, T., Maeda, T., Fujisawa, Y., Tsuji, H., Nomoto, K., Ohno, K., &

      Hirayama, M. (2017). Progression of Parkinson’s disease is associated with gut

      dysbiosis: Two-year follow-up study. PLOS ONE 12 (11): e0187307. Retrieved from

      http://doi.org/10.1371/journal.pone.0187307

[2] The Michael J. Fox Foundation for Parkinson’s Research (2017). Webinar: “Gut bacteria and

     Parkinson’s.” YouTube. Retrieved from

     https://www.youtube.com/watch?v=qSWTbvQGQ38

Bette Jane Camp
NWPF Blogger

Recent Posts

Punch-Drunk Parkinson's
Pass to Pass to Pass...
Terry & Marian's Thanksgiving for Two
"Pilot to Co-Pilot"
A Gem in the Healthcare Haystack

Topics

Ability (1)
access (1)
Active (2)
Activist (1)
Affordable (1)
Approach (1)
art and culture (1)
astrophotography (1)
Athletic Training (1)
attitude (23)
Attitude (7)
Auction (1)
Author (1)
Autonomy (1)
Benefits of exercise (1)
book (1)
Book (4)
Book review (18)
Book Reviews (1)
Books (1)
Boxing (1)
care (1)
care partner (1)
Caregiving (1)
Caregiving & Relationships (41)
carepartner (1)
Celebrate (1)
Ceremony (1)
Choice (1)
Cognition (1)
Cognitive Decline (1)
community (1)
Community (5)
Connect (1)
curiosity (1)
dance (1)
dance for Parkinson's (1)
Dance for PD (1)
diagnosis (1)
Diagnosis & Progression (35)
diet (1)
Diet (1)
Disability (1)
Dopamine (1)
Easy meals (1)
Education (2)
empower (1)
end of life (1)
Engage (2)
engagement (1)
English (1)
Enjoy (1)
Executive Director (1)
exercise (1)
Exercise (39)
Exercise & Movement (6)
Experiencing Parkinson's (1)
Facts (2)
fall (1)
Fall (1)
Family (2)
Friends & Family (1)
Friendship (1)
Fun (1)
Fundraising (3)
Gala (1)
Golf (1)
Golf Lessons (1)
Golf with Parkinson's (1)
Grandparent (1)
Grandson (1)
Grant writing (1)
Greet (1)
Halloween (1)
healthcare (1)
Hero (1)
Hike (1)
Hike for Parkinson's (1)
Holiday (2)
Hope (38)
HOPE Conference (1)
Hot (1)
Humor (1)
Iced (1)
Illustrator (1)
Inland Empire (2)
Julio Angulo (14)
Legacy (1)
legislation (1)
Life with Parkinson's (1)
Lifestyle (20)
Literature (1)
Living with Parkinson's (106)
Medicare (1)
Melissa Tribelhorn (1)
motor symptoms (38)
Motor symptoms (2)
Move Connect Engage (2)
Movement (2)
Movement Disorders Specialist (1)
Never say never (1)
Newsletter (1)
nonmotor symptoms (41)
Nonprofit (3)
Nonprofit Mission (1)
northwest (1)
Northwest (1)
northwest parkinson's (1)
Northwest Parkinson's (1)
NW Parkinson's (1)
Outlook (1)
pacific northwest (1)
Pacific Northwest (2)
Pain (1)
parkinsons (2)
parkinson's (4)
Parkinson's (10)
parkinsons awareness (1)
parkinson's awareness (2)
Parkinson's awareness (2)
Parkinson's Awareness (4)
Parkinson's Community (5)
Parkinson's Diagnosis (1)
parkinson's disease (12)
Parkinson's Disease (2)
Parkinson's Disease Symptoms (7)
parkinson's family (2)
Parkinson's in the Media (11)
Parkinson's Nonprofit (1)
Parkinsons Research (2)
Parkinson's Research (2)
Parkinson's Story (1)
Parkinson's Writers (1)
PasstoPass (1)
Pause (1)
perseverance (1)
Perspective (2)
Peter Dunlap-Shohl (33)
philosophy (1)
photography (1)
Planning (1)
pnw (1)
Pour (1)
Programs (1)
quality care (1)
Quality of life (1)
Reaction time (1)
REI (1)
Research (27)
Resources (1)
retirement (1)
Reviews (1)
run (1)
running (1)
Services (1)
Sharing your diagnosis (1)
Sports (1)
Spring (1)
Stories (1)
Story (1)
strength (1)
Submission (1)
Summer (1)
Support (5)
support groups (5)
Support Groups (1)
tai chi (1)
take control (1)
tango (1)
Tea (1)
Teacher (1)
Team (1)
technology (1)
Terry Tuesday (2)
Thanksgiving (1)
The Weekly (1)
Therapy (1)
trails (1)
Treatment options (1)
Treatment Options (55)
Tuesday Terry (2)
Tuesdays with Terry (2)
Veterans (1)
Video (1)
Volunteer (1)
vulnerable (1)
Walk for Parkinson's (1)
wellness (1)
Winter (1)
working with parkinsons (1)
working with Parkinson's (1)
World Parkinson Congress (1)
Writer (2)
Writing (1)
young onset (1)
young onset parkinson's (20)

Archives

2018
Punch-Drunk Parkinson's
Pass to Pass to Pass...
Terry & Marian's Thanksgiving for Two
"Pilot to Co-Pilot"
A Gem in the Healthcare Haystack
Never Say Never
The Parkinson's Holiday
Melissa’s Vote Note
Baguette and Red
Pete Beidler: The Man Behind the Books
Decisions
Reimagining Our Approach to Parkinson’s
Celebrating Fall
Board Member Spotlight on Pinky Reeve
Inattention
Whispers on the Run
More than Our Words: Speech Pathology & Parkinson's
Hardwired for Humor
Golf & Parkinson's
Tea with Terry
Welcome to The Weekly!
Never Stop Learning: an Astrophotographer's Approach
Board Spotlight on Doreen Nicholas
Second Opinions
Parkinson's Pete Reviews "Perseverance" by Tim Hague
Pathway to Picnic Perfection
Board Member Spotlight on Gloria Gottesman
Care Cat
"We'll Never Leave Anybody Behind"
Parkinson's Pete Reviews "The Highest Tide"
Uniting the Parkinson's Community
Horse Sense & Parkinson's
The Ballard Wave
Parkinson's Pete Reviews "I Give My Eyes" by Brian Peterson
Board Spotlight on Elizabeth Keller
Who, What, When?
Controlled Flight into Terrain
No Good Deed Goes Unpunished
Guitar Therapy
A New Parkinson's Perspective
Pete Beidler Reviews "The Heartbeat of Creativity"
Board Member Spotlight on David Newsom
Pete Beidler Reviews "A Parkinson's Life"
We're Listening: NWPF 2017 Community Survey
Lessons From Having Parkinson's
Fundraising with Family: Meet the Hankens
Feel it in the Gut: Daughters of People with Parkinson’s
Pairing Tango & Parkinson's
New Diagnoses, New Posses
Meet your new Executive Director!
Outside the Ring: Rock Steady Boxing
Poetry & Parkinson's
Holding on to Hope
Confessions of a Pill Head
Tackling PD Together
Pulling the Plug
Five Important Questions: How Do I Make the Best Decision?
Love Your Body Week
A Review on Parkinson Pete’s Bookshelves
Why me?
Parkinson Voice Project
2017 2016
Lies That Parkinson's Disease Told Me
Managing the Holiday Blues 2016
Who Was That Masked Man?
The Rain Is Shining — A Thanksgiving Message
Book Review - H.O.P.E.: Four Keys to a Better Quality of Life for Parkinson's
David Leventhal: Dancer, Teacher, Community Leader, Humanitarian, Movement Specialist
Meet Emily!
Rhonda Foulds, Outrunning Parkinson's Disease
Book Review: The Perapatetic Pursuit of Parkinson Disease
Staff Stories - Melanie
Snake Oil, the Cure for Parkinson's.
Book Review: Nan Little
Life's a Lot Better with NWPF
Tipping Points
Book Review: Natural Therapies for Parkinson's Disease
Dare to Attend a Support Group
Ten for David
Time After Time: Kim Farmer's Story
The Glass is Half-Full
Book Review: Reverse Parkinson's Disease
Contentment
Parkinson's and Free Will
A positive attitude is everything
Book Review - Lucky Man: A Memoir
Alexithymia, the Parkinson’s Get Out of Jail Free Card
We Make Them Together: Major Decisions in Caregiving
Boxing is cool
Safety with Style: House Renovations you can hold on to
Book review: On My Own
Shaken to the Core
Isolation and Parkinson's Disease, The hiding and the hidden
Camp Brian Interview
Safety with Style: House design ideas you can hold on to
Book review: Shake Well Before Use
Notes on Acceptance
"Advice" to a person with Advancing Parkinson's Disease
Needed: New Parkinson’s Vocabulary
Caregiving: Ken's Story
A Well-Tested Testimonial, or Spin for Parkinson's
Safety with Style: House design ideas you can hold on to
Caregiving: Susan's Story
Rock Steady Boxing: Emily
Book Review: My Degeneration, A Journey Through Parkinson's
The Marble Halls of Power
Safety with Style: House design ideas you can hold on to
2015
ROCKIN’ AROUND THE GROCERY CART
Managing the Holiday Blues
Book Review: A Complete Guide for Patients and Families
The joke is on Parkinson's
I don't always like groups, but when I do...
JBC + DBS: A Mostly-Love Story (Continued)
Rock Steady Boxing: Fred Hyde
Present Moment: A Continued Conversation
Book Review: Navigating Life with Parkinson's Disease
JBC + DBS: A Mostly-Love Story
Present Moment
On the scent of Parkinson’s disease
Harold Allen (Hal) Newsom
The 2016 World Parkinson’s Congress in Portland, Oregon is Fast Approaching: Make Plans to Attend
Flowers on Dr. Starr's Tie
Leading the life of malicious whimsy
Listen: Unlocking Parkinson's Disease
Book Review: If I Can Climb Kilimanjaro, Why Can't I Brush My Teeth?
The Evolution of HOPE
QUIZ: How well do you know your Parkinson’s Disease?
Living with Hope
Notes on Hope
Tug, tug, tug
Denial on Trial
Flowers in Our Hair
Resilience: Bouncing Back from Adversity
Summer Travel
Tina Sawyer Steps Up Fundraising in Seaside
The uncooperative patient
To be in June
Pressure Sores
Caring for a Spouse Living with PD
Life Lessons
Doc Parkinson - A Eulogy
Boom Go Parkinson’s Costs
From the Depths of the Cupboards: Pumpkin Bars
Doctor's Visits
Get Moving!
Choosing a shared burden
Our Brain's "Negativity Bias" Part 2
Outside of Language
Managing Constipation in Parkinson’s Disease
Replacements
Finding Time for Caregiver Care
The Helplessness Antidote
Examples of living your best
10 exercise tips for people with Parkinson's
Bit on Basketball
Suggestions for the Shaken
Parkinson's Action Network (PAN) Report
Our Brain’s “Negativity Bias”
Living for a Cure
Three Huge Changes for People with Parkinson's
Caregiving, the Next Level
Parkinson's Pundit
Perseverance
Making Spousal Relationships Work
Parkinson’s and Luck
Strength. Courage.
Resolve to be a Better Caregiver!
Update from the Parkinson's Action Network
Strategies to Achieve our New Year’s Resolutions and Goals
Movement is Medicine
2014 2013 2012
Most popular posts of 2012
What are you grateful for this holiday season?
How can I tell whether medications are wearing off or Parkinson’s disease is progressing?
Can a person with Parkinson’s give blood?
When is the right time to start Levodopa?
Can acupuncture help PD symptoms?
Support the Caregiver in your Life
Power of the mind to move treatment further
Top 10 Foods for Parkinson’s (and counting!)
How can I prevent dizziness?
What can you tell me about laser light therapy and Parkinson’s
What is music therapy?
Should I take Coenzyme Q10 for my Parkinson’s?
How do I treat my cough at night?
Parkinson’s fitness programs need to be tailored to the individual to get results
Carrying the Olympic Torch for Parkinson’s today
Coffee reduces risk of Parkinson’s. What about other foods?
Facts about depression
How can I find a good doctor who is knowledgeable about PD and is caring as well? My doctor does not always listen.
Help for constipation
Sex, Intimacy and Parkinson’s
Does DBS affect speech?
Walking and balance can significantly impact quality of life- but is treatable.
Depression is common with Parkinson’s
Ode to Parkinson’s- Poem from Member
Music Enhances Brain Activity
How does posture change with Parkinson’s?
What is important to you?
Are hallucinations caused by Parkinson’s?
Hot Off the Press – Neupro approved by FDA
How do I find a Parkinson’s physical therapist to keep me exercising?
Does Azilect slow disease progression?
Manage nausea from medicines
Is delaying medication harmful?
Advice for newly diagnosed
Is Parkinson’s Hereditary?
Medication Timing
Is gambling a side effect of medicine?
Medication Assistance
Does stress cause Parkinson’s?
When to see a physical therapist
FDA approves DATScan
Coconut Oil
Protein’s effect on medicine
Restless Leg Syndrome