NWPF
PD Community BlogRead Blog
Shaken to the Core
Wednesday April 13, 2016
By Allison Toepperwein
Single Mom, Blogger, Social Media Network Creator, Motivational Speaker, Fitness Enthusiast, Mud Runner, Parkinson's Patient and Overcomer
This blog post originally appeared in The Huffington Post
It’s started. But, I took an extra dose. Oh gosh, they’re looking. Where was I? Now it’s getting worse, because they’re looking. Make it STOP! Telling myself that is NOT working! Now, I’m rambling. I’m just going to close.
“So how did I do on time?” I asked. Out of a 10-minute presentation, “It was 5 minutes.”
I live each day, waking up knowing I have a progressive, degenerative disease known as Parkinson’s. Each day, I wake up with vigor to take on the day. I hop in the shower and it becomes a nuisance to shave under my arms. However, prior to my diagnosis and subsequent prescriptions, it was just pitiful. I usually wait until right before heading out the door to take those meds; trying to pretend I can overcome the symptoms. My left hand trembles as I apply my staple cat eye. Rigidity is a reminder when I’m stiff, curling my hair. “Ouch!” Every time, every single time I walk through the door way, my shoulder catches the frame! But, once those meds kick in, I’m riding the wave.
Thirty minutes into them, I slowly regain the ability to type with both hands. Brain fog starts to fade. I can fully function again! That is until, about two hours into these same meds that helped me feel whole, calm my shake, and allow me to regain the spatial recognition of my body; creates unwanted twisting and turning of my hand. This is known as dyskinesia. An hour goes by, and the dyskinesia has ceased. I have another hour or so, before my tremor is back and the brain fog returns. Time to take my pills! Rinse and repeat.
This is my reality. I love how my life is forming, even with PD. Taking a few pills a day are hardly irritating. Even though I live around my meds. I read about people with real problems and I am humbled each day. I am in stage one of early onset Parkinson’s disease. I’ve had symptoms for at least six years. And I believe exercise is the main reason it hasn’t progressed further. My reality is hardly sad or pitiful.
I’ve read about a 13-year-old boy who was diagnosed in Columbia. He is now a grown man who uses comedy to overcome his symptoms. Or another man who is the first Olympian with Parkinson’s and has had five open-heart surgeries to combat a heart defect. There is a man who will be jumping out of a plane 300 times in 24 hours to raise money for Parkinson’s, in honor of his dad. He will accomplish this with only one arm, that he lost in a snow mobile accident just a few years ago.
This week I gave a presentation. While I live with the reality of Parkinson’s, most of the time I’m unfazed. I live by the mantra, “It is, what it is,” and refuse to dwell. Yet, every once in a while, like during my presentation, my tremor shakes me to my core and I realize I’m not like I was before. I used to be able to hide my nerves. That is no longer the case. Now I wear my emotions on my left arm in the form of a tremor. The more they stared, the more pronounced my tremor became. This new social awkwardness is just one more challenge I will overcome.
April is Parkinson’s awareness month. This month I will be donning high heels every opportunity I get for the Heels On Head Up campaign benefiting the Michael J. Fox Foundation and organized by the GORGEOUS and effervescent Shoe Maven. My story of fitness and fighting PD my way, will be featured by the National Parkinson Foundation. This month I will be cheering for friends, most of whom I’ve yet to meet, but all of which are battling their way as a Parkinson’s warrior.
Some things Parkinson’s has taught me is no one is impervious to the shakes. No one will go through life without getting a taste of their medicine. No one will miss at one time or another, being a slave to the clock. While, some of my symptoms are visible, like most people, many are still hidden.
Parkinson’s has also taught me how to live! My entire life I wanted to be artistic! In November I began drawing, never having taken an art lesson.
I’ve applied to be on America Ninja Warrior, now able to jump, hang and swing further than most disease free 30-somethings. I hope to hear back this month!
I’ve developed friendships all over the world. I’m setting a better example for my daughter by my actions, than I ever could have imagined. And I believe, I truly believe that all things are possible, in particular a cure!
So, in this month of Parkinson’s, I ask you, what is your Parkinson’s? What can shake you to the core, make you rethink every part of your life, and give you the propulsion you need to fly? In the next 30 days, think of what can rattle your life?!
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Stronger Together: Daughters of People With Parkinson’s
Wading without a Muse
Staff Spotlight on Jordan Whitley
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Changing a Battery
Snowmageddon Snydrome
One Grunt, or Two? A Parkinsonian Dialogue
One Look at Community: the Newest Women's Support Group
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Board Member Spotlight on Steve Gilbert
A Mutual Admiration Society
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Never Say Never
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Hardwired for Humor
Golf & Parkinson's
Tea with Terry
Welcome to The Weekly!
Never Stop Learning: an Astrophotographer's Approach
Board Member 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"
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Horse Sense & Parkinson's
The Ballard Wave
Parkinson's Pete Reviews "I Give My Eyes" by Brian Peterson
Board Member 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"
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Pete Beidler Reviews "A Parkinson's Life"
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Fundraising with Family: Meet the Hankens
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Five Important Questions: How Do I Make the Best Decision?
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Parkinson Voice Project
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The Parkinson's Pandemic
Parkinson's and Profanity
Parkinson's Pain by Proxy
Autoimmune Diseases
The Most Interesting Men in the World
What Dreams May Come…
Book Review: on Carrying the Black Bag
Make Anger Your Ally
The Parkinson's Life (You Should Be So Lucky)
Distractible Me
Parkinson's Takes Guts
Being Defined by Parkinson's Disease
Don't Mistake Your Claws For Virtue
A Day in the Life of a Parkinson Warrior
Who Needs PAM?
Bicycling through Alaska Winter: Insanity, or Mere Stupidity?
Pay It Forward
Book Review: Dealing and Healing with Parkinson's Disease and Other Health Conditions
Parkinson's Rules
Book Review: Everybody Has a Window and Aisle Seat
10 Things You Don't Know About PD
Introducing NWPF's New Social Services Manager: Sarah Winter, MSW, LICSW
Davis Phinney Foundation for Parkinson's: Preparing People to Meet Someone with Parkinson's
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
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Meet Emily!
Rhonda Foulds, Outrunning Parkinson's Disease
Book Review: The Perapatetic Pursuit of Parkinson Disease
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Snake Oil, the Cure for Parkinson's.
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Tipping Points
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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
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
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
Hello from Canada!
You can't do that!... Can you?
Behind the Scenes with Maria Cole, MSW
Aiming for Well-Being
Aiming for Well-being
Holiday Feasts, Family & Fun
Pause and Be Thankful
Diagnosis is a turning point, not a beginning
Behind the Scenes with Steve Wright
On the Practice of Gratitude
Thanks for Joining Us at the HOPE Conference for Parkinson's
Frozen Men
Is there anything good about Parkinson's Disease?
Understanding and Managing PD-Related Shame and Embarrassment
An Open Letter to My Family & Friends
Parkinson's Travel Tips
PD & Creativity
Living Conference Held in Boise
Caregiver Burnout - Write it Down!
How Could I Be So Wrong?
Medicine and Cognition
Take a Hint from PD
Taking the Park out of Parkinson's
Northera and Dizziness
Re-Prioritizing Hopes
Dairy & Gut Health in PD
Nature's Moments
One Step At A time
Antioxidant Diet
Common Medicines Common Side Effects
Parkinson's Posture
Parkinson’s Disease & Supplemental Security Income
Parkinson’s Paradoxes
Coming Out of the Caregiving Closet
Parkinson’s Disease Nutrition: Why is it Relevant?
The Importance of Care before Cure: NWPF’s Past, Present & Future
2013
You can't do that!... Can you?
Behind the Scenes with Maria Cole, MSW
Aiming for Well-Being
Aiming for Well-being
Holiday Feasts, Family & Fun
Pause and Be Thankful
Diagnosis is a turning point, not a beginning
Behind the Scenes with Steve Wright
On the Practice of Gratitude
Thanks for Joining Us at the HOPE Conference for Parkinson's
Frozen Men
Is there anything good about Parkinson's Disease?
Understanding and Managing PD-Related Shame and Embarrassment
An Open Letter to My Family & Friends
Parkinson's Travel Tips
PD & Creativity
Living Conference Held in Boise
Caregiver Burnout - Write it Down!
How Could I Be So Wrong?
Medicine and Cognition
Take a Hint from PD
Taking the Park out of Parkinson's
Northera and Dizziness
Re-Prioritizing Hopes
Dairy & Gut Health in PD
Nature's Moments
One Step At A time
Antioxidant Diet
Common Medicines Common Side Effects
Parkinson's Posture
Parkinson’s Disease & Supplemental Security Income
Parkinson’s Paradoxes
Coming Out of the Caregiving Closet
Parkinson’s Disease Nutrition: Why is it Relevant?
The Importance of Care before Cure: NWPF’s Past, Present & Future
Impulsive behaviors and activities: What is the cause?
Top medicines that worsen Parkinson’s disease or cause secondary parkinsonism
Is leg pain a symptom of Parkinson's?
Look beyond Parkinson’s when symptoms change quickly
Stem cells-what are they and how are they made?
Acting out your dreams- a sleep problem in Parkinson's disease
Are there recommendations for the best type of mattress for Parkinson's?
How can service dogs help Parkinson's?
Is your environment a high risk PD zone?
Is natural dopamine better than Sinemet?
Is marijuana helpful for Parkinson’s?
What is atypical parkinsonism and how does it differ from PD?
Does glutathione help Parkinson’s disease
What do I need to know about vitamins?
When do I need to see a physical therapist?
Can you give any additional information about Othello Syndrome in the context of PD?
What causes hallucinations?
How can I alert medical providers that I have DBS in an emergency? Can mammogram be done?
Top Ten Tips for Parkinson’s Disease- Tell us yours
Booth Gardner has touched the lives of so many
How do I best time doses of carbidopa/Ldopa?
My mom has PD and almost every evening, any time between ...
How does Parkinson's affect cognition? What can be done about it?
Absorption of Sinemet requires optimal GI health. Is anyone working on a sublingual delivery of the medication?
Can ultrasound treat Parkinson’s tremor?
2012
Top medicines that worsen Parkinson’s disease or cause secondary parkinsonism
Is leg pain a symptom of Parkinson's?
Look beyond Parkinson’s when symptoms change quickly
Stem cells-what are they and how are they made?
Acting out your dreams- a sleep problem in Parkinson's disease
Are there recommendations for the best type of mattress for Parkinson's?
How can service dogs help Parkinson's?
Is your environment a high risk PD zone?
Is natural dopamine better than Sinemet?
Is marijuana helpful for Parkinson’s?
What is atypical parkinsonism and how does it differ from PD?
Does glutathione help Parkinson’s disease
What do I need to know about vitamins?
When do I need to see a physical therapist?
Can you give any additional information about Othello Syndrome in the context of PD?
What causes hallucinations?
How can I alert medical providers that I have DBS in an emergency? Can mammogram be done?
Top Ten Tips for Parkinson’s Disease- Tell us yours
Booth Gardner has touched the lives of so many
How do I best time doses of carbidopa/Ldopa?
My mom has PD and almost every evening, any time between ...
How does Parkinson's affect cognition? What can be done about it?
Absorption of Sinemet requires optimal GI health. Is anyone working on a sublingual delivery of the medication?
Can ultrasound treat Parkinson’s tremor?
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
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