NWPF

PD Community BlogRead Blog

"We'll Never Leave Anybody Behind"

Monday July 09, 2018

Seal of the US Army Aviation

 

I believe Carlton could connect anyone to the resources they need. Maybe he and his wife Harriet go to the grocery store with a list; they probably leave with all items checked, plus a half dozen fellow shopperscalendars marked to learn about Parkinson's at the American Lake VA.

This is based on one conversation with him. But there's no doubt that Carlton has brought people together, a great community in need of support. And I'm so thankful I got the chance to talk to him about Western Washington's first support groups for Veterans with Parkinson's.

 

How did you decide to start a support group for veterans with Parkinson’s?

 

I saw a need for vets with Young Onset, like myself.

The first line of defense for Parkinson’s is to learn, to find out where to go next. In the military’s chain of command, the drill sergeant is first in line—the go-to person. If the drill sergeant doesn’t have the answers, they’re going to find them up the chain and make them available to the soldier.

Looking at [Parkinson’s] from that scheme: I didn’t get any answers when I was diagnosed. There was no drill sergeant [laughs].

That’s why this support group fits [vets] who need to know what’s going on with Parkinson’s. And I’m tipping my hat to Sarah Winter [Social Services Manager of Northwest Parkinson’s] and Annie Gellenbeck [of the American Lake VA]. They’re the core people who help put this togetherI was just an innocent bystander!

 

You filled a missing role: a go-to person for Parkinson’s! Did you conduct outreach for the group?

Well, I did in certain ways. I went into the cafeteria at the American Lake VA, and opened up the floor with: “We’ve got a Parkinson’s support group coming up; you’re welcome to join in.”

And they looked at me and said, “What is this again?” [laughs].

I said, “If you have Parkinson’s, or if you know somebody who has Parkinson’s, feel free to come to this meeting. This support group is for your benefit.”

My hope [for the group] is so full. I’d like for anyone to be able to come by and find out who has what neurologist, who broke ground on certain research. So many things can and will come out of the group.

Information on Parkinson’s doesn’t always come in one easy-to-read book. Sometimes we need others to help break it down for us.

 

Does [the VA support group] already feel like a new community?

Yes, definitely. Some people we know from other support groups, and [they] really feel the openness of veterans. When we soldiers get together, we exchange phone numbers right away so we don’t break contact. The information spreads fast, and we run with it. It’s amazing.

When I was diagnosed, I wasn’t told what brought it on, what caused it. But I really needed to know what I could expect next. And I didn’t get those answers.

Parkinson’s doesn’t discriminate between veterans and non-veterans. [The VA support groups] welcome everyone affected by Parkinson’s, under the umbrella of the militaryveterans, their family, friends.

 

When were you diagnosed?

I was 56. I left the military in 2012, so diagnosed in 2011. But they said I could’ve had it as early as 2009.

 

Did you know much about Parkinson’s before your diagnosis?

Oh, no. I didn’t know anything about Parkinson’sI didn’t know how to spell Parkinson’s! [laughs].

I thought it was like a splinter in your finger; I thought it was something that’d be better in two weeks.

But lo and behold, Parkinson’s is a whole different ball game.

 

Do you have any advice for people newly diagnosed with Parkinson’s?

Find out all that you can about Parkinson’s. Don’t take it lightly, or wait ‘til tomorrow.

From my point of view, exercise is one of the best things you can do to keep Parkinson’s at bay. You cannot stop Parkinson’s, but you can slow it down.

The one thing you’re going to do is not give up. Not give up.

 

What exercise works for you, keeps you going?

Riding my bike, and sparring a bit with my UFC gloves. I thought I’d try out boxingI’ve realized that my aggression level has actually increased with Parkinson’s. [laughs] 

 

It sounds like you’ve got great outlets. What branch of the military did you serve in?

Army Aviation. I enlisted in 1986, in New York, and retired April 30, 2012. I served for 26 years. Washington State was my last station.

I like Washington for the air. It has the cleanest air around.

 

Did your whole family move to Washington, too?

My first child is serving in the Air Force. I have five kids, ranging from 40 to 14. Most are in Washington, but the rest are scattered throughout the United States.

 

They’ve got a good dad, huh?

Yeah, they do. They do.

 

Do you think serving in the army has shaped the way you approach life with Parkinson’s?

 

The military didn’t exactly shape me to take on everything that’s thrown at me. But it did do some things.

You know the affection you have for your family? The military taught me to cherish that.

It gave me a discipline to know the difference between what [really matters] and what doesn’t. It taught me to be quick on my feet, and to remember: you’ve got a purpose. Because in the military everybody carries out a collective goal.

This is a personal battle [with Parkinson’s]; in the military you do the fighting collectively. Every person with Parkinson’s that you see or know has an individual battle to fight.

And you can fight it not by doing nothing, but by doing something.

 

To me, that’s the beauty, the grace, of people like yourself: you make this individual battle more livable, and more collective, too. Everyone experiences Parkinson’s differently but we can live it out together. We become a team.

Yes. One person tells another person and lo and behold we’ve got a chain link going. It never ceases to amaze me. We’re here for the soldiers and they know: we’ll never leave anybody behind.

 

Western Washington

Support Groups for Veterans with Parkinson's

Second Fridays of the Month

Next: July 13, 2018

11:00 am - 12:30 pm

American Lake VA
9600 Veterans Drive
Lakewood, WA 98493
Building 3, Room 208
Seattle VA
1660 S Columbian Way
Seattle, WA 98108
Building 1, Room 320

Bette Jane Camp
NWPF Blogger

Recent Posts

Terry & Marian's Thanksgiving for Two
"Pilot to Co-Pilot"
A Gem in the Healthcare Haystack
Never Say Never
The Parkinson's Holiday

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 (6)
Auction (1)
Author (1)
Autonomy (1)
book (1)
Book (4)
Book review (18)
Book Reviews (1)
Books (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 (4)
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)
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 (5)
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 (19)
Literature (1)
Living with Parkinson's (105)
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 (9)
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 (6)
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)
REI (1)
Research (26)
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 (4)
support groups (5)
Support Groups (1)
tai chi (1)
take control (1)
tango (1)
Tea (1)
Teacher (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
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