The Lessons: Control And Beyond

Here are just SOME of the lessons that 12-12-12 project member Pam shared with us during her INSPIRATIONAL podcast interview.

Lesson #1
“We are not in control. Living with a movement issue, I spent the majority of my life trying to control anything because I couldn’t control the main things, and it’s a waste of time”

Lesson #2
“We have to accept ourselves with all of our imperfections.”

Lesson #3
“You have to not assume that other people are thinking anything about you. I used to walk down the street and not want to look at anyone else because I was convinced they were looking at me and how I walked.”

I HIGHLY suggest you listen to Pam break down these lessons in our recent podcast. If you want to jump directly into the lessons they start at 50:16.

PODCAST HERE

Much love,
Marissa

Podcast With 12-12-12 Project Member Pam Sloate-Dystonia

Play

Pam opens up about her experience living with Dystonia since age 8 1/2. She talks openly about Dystonia, grief & loss, and maintaing a positive attitude. She shares SOME VERY important life lessons! It’s a MUST LISTEN.

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Download the audio

Much love,
Marissa

P.S. Pam, thank you for stepping outside of yourself to do this interview. I love you girl!

Trying To Understand Dystonia- Whiteboard Edition Plus Video

Marissa spending time on her whiteboard trying to understand Dystonia

I came across this video on YouTube and it struck a cord. This gal, Lynn,  is SO BRAVE for sharing her Dystonia experience. I appreciate her giving us visual insight into her experience living with Dystonia.

HEADS UP Vestibular folks: There is a ton of visual movement from the camera and from watching her movement.

Much love,
Marissa

P.S. Looking forward to interviewing Pam from Dystoniamuse.com this weekend!

 

1000mg Of Hope

Me and 2.8 MILLION PEOPLE this month have been infiltrated by the nasty cold and flu invaders. This cold has wrecked havoc on my immunity for the last few days. The symptoms have been heavy head, congestion, sneezing, mild lingering headache, watery eyes, and fatigue. I am tired and irritable!

In hopes of gaining some symptom relief, I begin popping 12- Hour Sudafed sinus congestion and pressure pills. Within a few hours of taking the pills, my eyes stop watering, and the vice around my head seems to lessen, HOWEVER, the relief is brief and minimal! Regardless of relief, I still feel terribly sick, forcing me to dismiss the moments of interim relief. Yet, every 12 hours I find myself popping these pills!

sudafed

MOST of us have sampled majority of the cold medicines starring back at us on those cluttered store shelves. Temporary and minimal relief are your best hope. The medications won’t cure, they are meant to push us through the worst. We get desperate for any relief. Our medicine cabinets reflect that desperation! We pop a pill because desperate times calls for desperate measures!

THANK GOD, eventually in time, my immune system will dry up this cold, and it will be ridded from my body.

Wouldn’t it be comforting to know that a positive outcome awaits after illness ran it’s course?

Living with a vestibular(balance disorder) condition that is chronic, I have taken my fair share of vestibular suppressant medications. Lying there doped up on meclizine or valium in hopes of temporary relief that never came. The medications I have tried so far have been unsuccessful and have been counterproductive due to unpleasant side effects.

Which brings me to December’s 12-12-12 project member Pam. Pam is living with Generalized Dystonia. Dystonia being a disorder of movement.

According to Pam’s fantastic blog, Dystonia Muse: Chronicles Of A Dystonia Muse

Our muscles themselves are fine. They’re just receiving confusing instructions (“mis-transmissions”), like a mis-coached football team running around in senseless patterns, no offense or defense, as they fail to accomplish coordinated plays let alone score a touchdown!

In a blog post titled, “Introducing My Meds” , Pam describes medications that treat Dystonia…

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need.

Pam finds herself consuming a triad of medications. Her choice of cocktail:

1.) Trihexyphenidyl (Artane)- A member of the Anticholinergic family. One of the more common prescribed medications for Dystonia patients. This drug is responsible for blocking a neurotransmitter (chemicals in the body that transmits signals between nerves) called acetylcholine(signal transmitter from the nerve endings to the muscles)!

Pam says: “Artane appears to be the muscle in my regimen. Artane is an anticholinergic that blocks the action of acetylcholine.”

2.)  Sinemet( Carbidopa/Levodopa)- This drug is referred to as a Dopaminergic agent. It’s known to increase brain dopamine (Dopamine is the neurotransmitter that initiates and controls movement as well as balance).

Pam says: “Sinemet (Carbidopa/Levodopa) is used to synthesize dopamine. Both Artane and Sinemet are indicated for Parkinson’s. They are also used with Dystonia (off-label) to varying effect. Dopamine deficiency is the primary culprit in Parkinson’s, causing an imbalance between acetylcholine and dopamine in the movement centers of the brain.”

3.) Zonegran- Is known as an anti seizure medication. Anti-seizure medications can also help inhibit neurotransmitters.

Pam says: “I’ve never met anyone who takes Zonegran for Dystonia and occasionally come across someone on Tegretol. My assumption with the anti-seizure meds is that the involuntary muscle contractions can perhaps be approached as mini-seizures, but that’s purely my own logic.”

SIDE NOTE:  Thanks Pam for the crash course on Dystonia medications!

Remember, all Dystonia meds are prescribed off-label, meaning they aren’t indicated to treat Dystonia. Bottom line, the doctors can’t know why these drugs work until they understand Dystonia’s underlying mechanisms. And remember, response to medication is variable. What helps one patient may not help another.

My dream would be a cure for vestibular and movement disorders! However, if hope comes in 1000 mg tablets, that is a prescription I will happily fill!

I realize I am asking for hope in pill form, but It’s my hope that in Pam’s lifetime and in my lifetime, medications become available that kick these terrible illnesses into complete remission! We need MUCH MORE than temporary and minimal relief.

Much love,
Marissa

P.S. Be kind to EVERYONE this Holiday Season. Some of your family and friends are taking a cocktail of medications, pushing themselves to participate in holiday gatherings.

References:
U.S. Has Typical Flu and Cold Season, Despite Warmer Winter
NetDoctor- Dystonia 
Dystonia Medical Research Foundation- Glossary 
Mayo Clinic- Dystonia: Treatment and drugs 
RXList- Zonegran
Holistic Online- Parkinson’s Disease
Dystonia-Spasmodic Torticollis: Oral medications and Dystonia 
Dystonia-Spasmodic Torticollis: Dystonia and various medications 
WiseGeek- What is Dystonia 

Dystonia Awareness Gear

Pumped! I received my Dystonia awareness gear in the mail.

You gotta check out the Dystonia Medical Research Foundation Shop. You will find some great items for purchase!

Dystonia awareness gear

What is Dystonia: “Dystonia is a neurological moment disorder.”

A few Dystonia facts pulled from the informative brochures that arrived….

1. “When Dystonia affects a single body area, it’s called focal dystonia”

2.”Dystonia that only occurs when a person does a specific activity- for example, a musician who develops symptoms only when playing an instrument  is called task-specific dystonia.”

3.“Some forms of Dystonia are attributed to a specific cause or trigger, and for other forms the cause is not yet identified.”

Much love,
Marissa

Time For A Little Spoken Word- Dystonia

I have ALWAYS wanted to participate in a spoken word performance. If I were to have the opportunity, I would LOVE to perform this piece and spread Dystonia awareness!

“Dystonia”

Disorder causes muscles to contract

Involuntary spasms leaving no time to react

Living with a disorder that is so unpredictable

Everyone please appreciate the parts of your life that are predictable

Cervical Dystonia turning your head to the side,

Creating back and forth motions, a symptom you can’t hide

Oromadiubular Dystonia, causing facial, jaw, and tongue pandamonia

Fingers and toes curling up, silencing a pianist from the crescendo building up

Blinking uncontrollably, eyelids getting no rest,

You can blame that on the Blepharospasm expressed

Generalized Dystonia is my friend Pam’s fate,

Cramping and twisting of her body causing unsteady gait

Affecting 500,000 people living in the United States,

A disorder that doesn’t discriminate it dictates

Awareness is an important mission, it offers the possibility of complete remission

Much love,
Marissa

References: Dystonia Medical Research Foundation

Understanding Dystonia

Musicians with Dystonia

What is Dystonia?

 

Self Control Over The Control Freak

I won’t do myself or you a disservice by not keeping it real! Things are about to get personal.

As soon as the cloud began to dissipate over my vestibular heavy head, I started working toward earning my latest badge-CONTROL FREAK.

I have done my best to control EVERY ASPECT of my life pre AND post-vestibular.

Post-Vestibular, (balance disorder) if I couldn’t drive to the grocery store on my own, I would control the foods babe, and I consume.

If I couldn’t return to the job I loved, I was going to insert my opinion every chance I could get regarding the career path I felt babe should be heading down.

If I couldn’t see rapid progress in vestibular rehab therapy, I would focus on weight loss. At least I could visually see the progress.

Not to let myself off the hook, but I didn’t realize how much of a control freak I was becoming until my conversation with 12-12-12 project member Pamela.

After I got off the Skype call with Pamela something clicked. I realized I had morphed into a control freak. I am trying to control EVERY aspect of my life because I have no control over the vestibular symptoms.

Poor Babe! Because I believe I can control everything in my world, I am unleashing kryptonite on this man.

What happens if babe decides he doesn’t want to eat gluten free bread?

What happens if babe decides he wants to drop out of his Master’s program?

What happens if I gain 40 lbs?

Before this life lesson was revealed, I will tell you exactly what would have happened. I would have been disappointed in myself for what I would have seen as tragedies, and would have believed I didn’t try hard enough to prevent these tragedies.

Side Note: WOW! Tragedies? M-A-R-I-S-S-A…really?

Are you creating a world where you believe everything outside of yourself can be controlled?

While we may not be able to control all that happens to us, we can control what happens inside us. – Benjamin Franklin

Let’s talk about situations where being in complete control would be beneficial.

12-12-12 project member Pamela is living with a movement disorder called Dystonia. Her muscles are fine, BUT they are receiving confusing messages. Imagine how unpredictable her life is!

Walking confronts me with a never-ending surprise party. One minute I’m strolling prettily, nary a care. Then I remember my legs – shazam, we have movement. – Pamela via blog post: Walking

She would love to wear my control freak badge for a day and have complete dominion over her muscle response, yet that’s not possible. Just as it’s not possible for me to have complete control over every aspect of my life and those in it!

What valuable lessons are you missing because your focused on controlling vs. having self control?

Pamela doesn’t have control over her muscle response!

I don’t have control over my vestibular response!

YET, we have the ability to control our emotional responses and reactions to what is happening in our lives. That doesn’t mean attempting to control everything not associated with our medical conditions, so we create a false sense of control!

Being able to shift from controlling to self-control is going to be a learned skill. Being in a heightened state of awareness will be required to shatter this unstable foundation I have created.

I now realize that Pamela and I were destined to meet. In ONE COVERSATION, she has allowed me to realize I was rebuilding my house on a foundation made of glass.

Much love,
Marissa