NWPF

PD Community BlogRead Blog

Parkinson's Pain by Proxy

Tuesday October 17, 2017

There is a moment familiar to most of you who have had Parkinson’s Disease for awhile. It’s the increment of time between the failure of every frantic effort you could make to avoid a fall, and the impact. It’s when you see the floor rising up to meet your accelerating mass, with nothing you can do to stop it. A moment that is given over to the message “This is going to hurt.” The only questions are how much, and how long.

Blog Illo 43 (1)

Is Parkinson’s painful? Not the way you usually associate pain with a disease or injury, an ongoing reminder that part of you is distressed. A reminder that grows fainter, and gradually gets better as the wounded organ recovers. Much of PD’s physical pain comes as a secondary accomplice to some other PD phenomenon. But that doesn’t mean it hurts less.

When you think of Parkinson’s as a brain disease, the usual rules do not apply. Your brain has no pain receptors, what would be the point? Anything that can make it past the formidable defenses the brain has, the skull and the blood brain barrier, is likely to be so devastating that there just isn’t anything you can do about it. But while the brain may not feel pain, when part of it goes haywire, the injury can manifest elsewhere painfully.

For example, one of the suite of miseries that can go with PD is dystonia, an involuntary twisting or cramping that occurs in some people when brain signals to the body are scrambled, as the flow of dopamine that normally signals from the brain to the muscles is interrupted by our disease. This can result in great pain in the affected area, charlie horses by the herd. Pain that shows up not in the brain where the damage is, instead, manifests in a location that has suffered no direct injury itself.

But Parkinson’s is more than a brain disease. There is good evidence that it may start in the belly and travel up the Vagus nerve, which connects your gut to your brain. As the disease moves, it does damage as it goes. The vagus is the main pathway for the signals that cue the sense you have of where your body is oriented in space. Damage to this important cuing system would help explain why people with Parkinson’s can easily lose their balance and fall. Once again, Parkinson’s inflicts pain, and physical damage, from bruises to broken bones, beyond the area directly compromised by the disease.

Another Parkinson’s phenomenon, R.E.M. sleep disturbance, can cause harm to the person with Parkinson’s as they lash out at danger in their dreams, unrestricted by the mechanism that stops healthy people from excessive movement during sleep. I’ve smacked my hand into the hard bed frame, scattered books from my bedside table, and even fallen out of bed during bouts of active dreaming.

Worse, the pain of Parkinson’s by proxy can here even extend to another person entirely, your innocent bed partner. They can be hit, bitten or even choked by the person who is ill and acts out the defense of self or a loved one in their sleep.

So there it is, more proof, as if you needed it, that Parkinson’s Disease is one of the most industrious, hardest working afflictions around. Not only does it damage the person who has it, it can go above and beyond to hurt those around you as well.

Peter Dunlap-ShohlPeter Dunlap-Shohl
NWPF Blogger

Recent Posts

Parkinson's and Profanity
Autoimmune Diseases
The Most Interesting Men in the World
What Dreams May Come…
Book Review: on Carrying the Black Bag

Archives

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