Traveling to Washington, D.C. | Traveling with vertigo

What an experience! I was lucky enough to have VEDA (Vestibular Disorders Association) nominate me to represent the vestibular community at the NORD (National Organization of Rare Disorders) gala in Washington, D.C. It’s been a little over a month since my return from DC.

US Capital

View of the US Capital from the US Botanic Gardens.

Here’s a few highlights:

  1. Stumbled upon two women living with vestibular dysfunctions. One gal has battled motion sickness since childhood, and the other suffers from Meniere’s disease. Both gals work for the airline I was traveling with. Small world!
  2. I met Tom, a fellow dizzy friend I connected with via the blog! He took a train bus from Ohio to DC just so we could hang out. It was comforting to spend time with someone that “gets it”!
  3. I survived a 5 hour flight… both ways!
  4. I attended my first gala, where 250+ supporters of the rare disease community heard the word “vestibular” for the first time!
  5. My husband and I were invited by a member of Congressman Fred Uptons staff to have a private tour of The Capital.
  6. I dined at more than one busy restaurant in a single week…and survived.
  7. I made it up the Lincoln memorial steps! (Tip: Use the side rails and your walking stick.)
  8. I walked a mile, to and from the local grocery store, on congested streets by myself!

 

Two pals living with chronic vertigo

Two dizzy pals meet: Tom & Marissa swapping dizzy stories over lunch!

Exciting experiences still possible

I NEVER imagined experiencing any of the aforementioned highlights post vestibular dysfunction.

Traveling to Washington DC was my first major trip away from home since that initial life robbing vertigo symptom presented itself.

It’s been a harsh 9 years living with a vestibular dysfunction. Majority of my time has been spent behind the four walls of my room. I’ve dreamed of once again having life altering experiences, but assumed exciting travel was no longer part of my story.

I now believe in possibility. Courage now has tangible meaning. I can say with confidence that life can still paint meaningful highlights, in spite of chronic illness.

 

Lincoln Selfie

Had to get in a Lincoln selfie!

Always prepare for a little gloom

I have to acknowledge there was gloomy side to this trip. I quickly realized how isolated the vestibular community is from the remainder of the chronic illness population. We technically don’t qualify as a rare disorder. According to the NORD website “In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans.” I’ve read estimates as high as 69 million people in the US have experienced a vestibular dysfunction. Also, majority of the rare disorders acknowledged at the NORD gala were traced back to a genetic abnormality. Once a genetic abnormality is identified, a drug protocol treatment plan becomes a possibility. Vestibular dysfunction, on the other hand, covers an array of disorders. Folks are left with disabling symptoms that may or may not stem from a genetic abnormality. We’re often living with subjective symptoms that don’t have an identified source. Hence, this may be a reason why updated testing and treatment options are minimal.

I can’t thank NORD enough for taking us in and welcoming vestibular disorders to the table!

This trip made it clear that WE MUST support VEDA. Effective treatment options will present once we have access to updated diagnostic testing. We will have access to technologies when awareness becomes so overwhelming we can’t be ignored.

Portraits of courage posters at gala- highlighting chronic vertigo

At the gala, posters were displayed highlighting stories of patients and families living with rare diseases.

Never ease up on your grip of hope

I left DC in hopeful spirits. I believe technology and time will collide producing effective treatment options and cures for folks battling chronic dizziness and vertigo.

I leave you with this. Don’t lose hope. Year one I was so disoriented I could hardly circle my neighborhood block! Yes, technically I’m now back behind the four walls of my room, but at least I can hold onto the hope that future positive life experiences are possible. I can’t say it gets better, but I can say you will learn to adapt and survive.

Much love,
Marissa

PS: Thanks to NORD and VEDA for this life changing experience!

iOS 7 Debacle Regarding Vestibular Disorders | iPhone and motion sickness

iOS7- iPhone hero shot by Apple

September 18, Apple released iOS 7. Adoption rates were being touted as high as 35% on day one.

I admit, I was salivating over the new iOS, overly eager to pounce on the anticipated update.

UNTIL… I got the text message alert from my fiancé!

“Bug, not sure if you have updated your phone, but don’t do it just yet… I had to update mine and the movement might bother you…”

Movement?

I said to myself…”What the heck is this guy talking about?”

Then it hit me! I found myself transported back to the iOS 7 Apple 2013 Keynote.

Craig Federighi, with his lovely locks of hair, passionately announced…

“As you move the device in your hand, it actually tracks your motion. It has Parallax, you can see behind the icons. It’s really incredible, and it carries across the system, this liveliness…”

I recall sitting through that streaming keynote thinking… “Oh S**T … ParaWHO?”

Like an awful blind date, I guess I blocked it out… DENIAL.

What the heck is a Vestibular Disorder?

You see, I have a Vestibular (balance) disorder.

A catastrophic disconnect between the vestibular system (includes the inner ear balance organs) and the parts of my brain that coordinate and process balance information.

Your brain is miraculous and often has the ability to compensate for damage, but I happen to be one of the unlucky ones that failed to compensate.

It appears, the balance areas of my brain are incapable of change.

My most unsettling symptoms are:  Chronic disequilibrium, bouts of vertigo, nausea, fatigue, vision sensitivity, anxiety, insomnia, and cognitive disturbances – I’ll let you visualize how these nasty symptoms interfere with a “normal” life workflow.

Folks living with vestibular disorders suffer a battery of debilitating symptoms from vertigo and dizziness to hearing changes. You can find a full list of symptoms here.

Can I catch a Vestibular Disorder?

Fair question!

“The vestibular system can be compromised in many ways. Viral infections (labrynthitis and vestibular neuritis), disorders that affect the inner ear fluid levels (Ménière’s disease and secondary endolymphatic hydrops), trauma from head injury, benign tumors (acoustic neuromas), and age related degeneration can all cause permanent damage to it. “

I don’t want to leave out my dear friends that suffer from debilitating symptoms like vertigo, nausea, and dizziness stemming from neurological conditions like…MS and long-standing brain stem lesion.

What’s the big deal, can’t you just get a Droid?

Let me stop you right there!

This isn’t about affordability of phones…. simply not updating your phone… or switching cell phone devices!

This is an issue of access.

If a group of individuals are vocalizing that a feature of technology is making them physically sick or exacerbating symptoms, and they can’t access technology, this should be taken seriously.

The future of the web and technologies that access the web are rapidly changing,  but access by EVERYONE regardless of disability is a founding principle.

The power of the Web is in its universality. Access by everyone regardless of disability is an essential aspect. — Tim Berners-Lee, W3C Director and inventor of the World Wide Web

I’m afraid to update my phone, because what if I get sick?

Not every person living with a vestibular disorder will be affected. It’s been noted, various folks living with a variety of vestibular disorders HAVE NOT been afflicted.

Don’t be afraid!

Someone within your 15 mile radius has an iPhone, ask to use it!  To be on the safe side, head to the Apple store (It’s been suggested to get there early AM…You know how we are in crowded malls!).

Have one of the Apple associates disable Parallax, and if the aggressive zooming in-and-out of icons and folders don’t appear to bother you… BAM… your one of the lucky ones. Update that baby!

Where can I learn more about iOS 7 and how it’s affecting people?

Here are a few fantastic articles that have surfaced:

 iOS 7 Animations Cause Nausea for Some.

Why iOS 7 is making some users sick

iOS 7 and motion sickness: What you can do, and where you can learn more

The rise of digital motion sickness: Video games, 3D films and iOS7 set to make condition the 21st century’s biggest occupational disease 

Where can I voice my opinion and concern:

I like your awareness spirit!

1.) Join the active discussion on the Apple support forum:

Any way to turn off iOS 7 navigation animations 

2.) Email Apple’s accessibility team, and express your concerns:

Apple’s an awesome company that’s shown a willingness to address accessibility issues. Their accessibility email address… accessibility@apple.com

 3.) File a report with Apple:

Jenni Leder, mobile app developer,  is suggesting… “file a report here: bugreport.apple.com and use this number so it duplicated: 15074144″

If you’ve never filed a bug report, see what Jenni’s bug report looks like.

4.) Join in solidarity:

*Head over to imore’s blog and complete the iOS 7 motion sickness poll.

Final Thoughts:

I’ve said enough!  Let the words of independent iOS developer, Matt Gemmell,  reverberate throughout your body…

“Accessibility affects everyone, and devices should be usable in all situations, by as many people as possible. Designing for accessibility levels the playing field, and increases the utility of devices for everybody.”

References:

Vestibular Disorders Association.” Home. Web. 29 Sept. 2013.
“Designing for Inclusion.” Designing for Inclusion. Web. 28 Sept. 2013
Boismier, Thomas E. “Vestibular Injury.” Compensation, De-compensation, and Failure to Compensate (n.d.): n. pag.Http://vestibular.org/sites/default/files/page_files/Vestibular%20Injury.pdf. VEDA. Web. vestibular.org.

Much love,
Marissa

PS: Change is slow, but possible!

PPS: To those that have found themselves subjected to hundreds of demoralizing, hateful, insensitive comments on various blogs… HUGS. You have a community that supports you and understands you. My girl Jane and I got your back! Connect with us over on Facebook via The Spin Sisters Podcast!

*Motion sickness appears to be the umbrella term used, but for those of us experiencing heightened vestibular symptoms triggered by the device, I believe we qualify to fill out the poll.

** Shout- out to Craig Grannell for taking on this issue and being one of the first to report it!

The Spin Sisters Podcast: Episode #1- Grief & Loss

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Woman clenching face with hands on head

July 2, 2013

Kicking off the first episode of The Spin Sisters Podcast! We don’t jump into the trenches, we dive head first! We attempt to tackle the heavy topic of chronic illness and the stages of grief and loss that often suffocates a chronically ill person like a wool winter blanket.

Show notes:

VEDA
Yahoo Sport Article- Dana White Says PRP Therapy Helps Inner Ear Disorder
Orthokine- Wikipedia

Orthogen clinic: 
http://www.wehling-hartmann.de/wir-ueber-uns/
http://www.orthogen.ch/en/index.htm

Facebook pages/forums:
VEDA
Dizziness Blues
Dizzy World Cafe
Migraine-associated vertigo forums
Labyrinthitis.org.uk

Grief & Loss:
Elisabeth Kubler-Ross foundation
List of books by Elisabeth Kubler-Ross
Seven Choices: Finding daylight after loss shatters your world 
5 Stages of grief shared from the perspective of a physician living with Meniere’s Disease

Connect with us! We would love to hear from you over on our Facebook page…. The Spin Sisters Podcast

With Love,
Marissa & Jane

PS: Please list the resources you have found helpful!

 

Chronic Dizziness Podcast …Coming Soon

The Spin Sisters Podcast Logo

 

EXCITED to be joining forces with my friend Jane to bring to you a podcast about living with chronic dizziness.

We are going to get down and dirty in the trenches navigating through this murky world we call chronic dizziness.

If you have ANY topics you would like covered, don’t hesitate to shout them out over on our Facebook page.

NOTHING is off limits!

We appreciate and welcome your well wishes and support!

Much love,
The Spin Sisters!
(Marissa and Jane)

Connect with us:
The Spin Sisters Facebook Page
The Spin Sisters Twitter Page

 

Happy Balance Awareness Week And Two Victories

Whoop! Sept 16-22nd is Balance Awareness Week.

Balance Awareness Week Banner

According to the Vestibular Disorder Association

The goal of Balance Awareness Week is to “defeat dizziness” by helping people recognize the symptoms of a vestibular disorder, and urging them to seek help from a professional vestibular specialist.

Possible Vestibular Symptoms are…

  • Vertigo
  • Dizziness
  • Imbalance
  • Spatial disorientation
  • Hearing changes
  • Cognitive and/or psychological changes
  • Lightheaded
  • Rocking sensation
  • Spinning sensation
  • Feeling false sensations of movement
  • You notice you are titling your head to one position
  • It’s hard to maintain a straight posture.
  • Tendency to look down
  • Difficulty tracking objects with your eyes
  • Sensitivity to light

AND the list goes on…

In addition, VEDA encourages the friends, family and coworkers of those suffering from a vestibular disorder to learn more about how balance dysfunction can impact their loved one’s ability to perform common day-today activities.

Family, friends, and co-workers IT’S CRUCIAL for me to alert you that a vestibular condition MAY NOT be something you can visual see, but those of us living with vestibular dysfunction are living with UNPREDICTABLE and LIFE-ALTERING symptoms.

WE ARE NOT dodging you when we have to cancel plans at the last minute.

WE ARE NOT trying to avoid work by having to call in sick.

WE ARE NOT unwilling to be intimate, it’s just one of the last things on your mind when you are chronically dizzy. (Yeah, I said it!)

It’s symptoms and the condition…NOT US and NOT YOU!

On to the victories…

#1. Was able to walk far enough to purchase lunch for Gram and I at El Pollo Loco! Whoop.

el pollo receipt

Side note: I walked into El Pollo and stood in line. As soon as I stood still it felt like I had just gotten off a treadmill. I felt as though I was still walking. Such a yucky feeling! I am hoping that continued practice will lead to habituation and that treadmill feeling will lessen.

#2 Pool victory.

Side note: I said that my first attempt running in the pool was less than a minute, but I had actually made it 2 minutes running in place in the pool! ALSO I realize I have NO CONCEPT OF TIME. The post I was referring too in the video was from May 20th 2012. So it has taken me 4 months to get to 19 minutes in the pool. I will take it!:)

Much love,
Marissa

Help Me Find a Pair of Water Shoes!

Babe and I were in the backyard taking in the sun. The pool looked exceptionally beautiful. It was hot outside, and the pool was glistening. I should be able to, dive in, and swim, right? Not so fast. I always seem to find myself perched at the edge of the shallow end of the pool feet submerged in the water. I swear there is a magnetic force in that pool water always tugging at me. Why do we want for things we can’t have?

I have been in the pool post vestibular disorder, but there is always a fear. The doctors warned me, never put my head underwater because I could drown. I understand that once I submerge my head underwater visual cues would be removed, and my visual orientation would be impaired. Also, the motion of the water brings unpleasant nausea and has triggered a vertigo spell or two.

Stairway To Swimming Pool

Image: FreeDigitalPhotos.net

Heck. Today I wanted to get into the pool. I even checked in with Siri to confirm the temperature outside. I was stalling. Gotta love smart phones! I finally stumbled across a post that stated 80 degrees outside is considered prime swim weather. As fate would have it, Siri had already alerted it was 81 degrees. I proclaimed my desire to get into the water, and Babe didn’t discourage me.

Next thing you know I was in the water. Pants, shirt, bra and undies. I didn’t care; I was in! It was freezing and I considered jumping out. Glad I didn’t give up. I was forced to stay in the shallow end! My movement began to stir the water into a forceful motion, and I started to feel yucky. I wasn’t ready to throw in the towel just yet. I elected to hold onto the edge of the pool and look away from the water. Did I tell you, I have not physically ran in 7 years? Running can be a trigger that  provokes dizziness and vertigo. I then started running in place. Before I could wrap my head around what was happening, I yelled out, ” I am running!”. I turned to look at babe, and I was greeted with a huge smile. I then asked babe to set the stopwatch and time me. “Set it for 10 minutes!” Once again he didn’t discourage me. He set the timer and I started running in place holding onto that edge. I pulled my hands away from the edge, and the buoyancy of the water held me in place. I screamed again, “I am running”! It was quickly realized I wasn’t going to make the 10 desired minutes. Babe yelled out, “How about we shoot for 2 minutes?” My reply, “What about 3?”. I made it to 2 minutes, and I fizzled out. But who the heck cares. I ran! I ran for the first time in 7 years. It may not have been in the traditional form, but it was my way, on my own terms!

Babe asked me to hold onto the shallow edge while he went to retrieve a towel. I had an opportunity to be alone to think about what I had just accomplished. I began to feel motion sickness as the water shifted me about. Babe hustled back and helped me out of the pool. The weight of the wet clothes felt tremendous. That weight represented the heavy burden this disorder has placed on my life. Babe started to wrap the towel around me, and I hugged him close and began to cry. He held me tight and said, “I am so proud of you.” I am proud of us. We have been in this battle together for 7 years, and we may not win every battle, but we will win the war!

Much love,
Marissa

Finally Turning On Life’s Joyful Flashlight

These last 7 years of vestibular(balance) chaos has led me into deep, dark, corners. I don’t often get opportunities to relish in joy.

Differing disabilities, one community | Meet disabled people online

 

Yesterday seeing the article that Blake Watson and myself coauthored for Disability Horizons, left me cloaked in joy!  I was beaming yesterday.

 

Disability Horizons - A 21st century view of disability

I want to experience more days like this! I need to experience more days like this. This condition has no problem leading me down a dark path. I realize I will have no problem finding my way out of darkness with the help of life’s joyful flashlight.

Much love,
Marissa

Recording My Vestibular Rehabilitation Therapy Journey May Have Come To An End

I can’t stop, and I won’t stop? What happens when you are willing to share your journey, but others are reluctant? I got this crazy idea in my head ; I was going to record my vestibular rehabilitation journey, in hopes we may all learn from the experience. What I failed to realize before I promised to deliver:

1. I need to ask permission
2. I have no idea how to edit video
3. I can’t be in complete control of the video recording, because I am in therapy.

I often lead with ideas first, application second. I may need to rethink the way I approach project ideas.

I can overcome obstacles 2 and 3, however, convincing the physical therapy center to allow me to record this journey may become an obstruction of my goal.

I believe this PT center is the best at what they do. My PT therapist has won me over. She is all business, and together we will kick butt and take names.

If you believe capturing my vestibular rehabilitation journey, for the next three months, would be beneficial, please comment below. I will direct the owner of the PT center to your comments.

 

See brief video recap of VRT day 2, plus supplemental video

Continue reading

12-12-12 Project March Photo Collage

This collage of photos was taken at my Chiro appointment. I am rocking a National MS Society shirt and awareness bracelet. Be sure to check out the National MS Society website to learn about getting involved.

chiro_appt_march_ms

 

I am going to feel a great amount of comfort rocking this shirt again later on in the week. I start vestibular (balance) therapy and knowing that there are others fighting and supporting chronic illness makes this journey feel more manageable.

February 12-12-12- Project Photo/Video Collage #2

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This collage of photos was taken at my Neuro-Optometric rehab appointment. I was rocking my Hope Whispers/Budd-Chiari Syndrome support t-shirt. You can support      12-12-12 project member Kim and purchase a support t-shirt from her Zazzle Store. The proceeds will go to Kim’s transplant fund!

Collage of photo's of Marisa at her Neuro-Optometric rehab appointment

I have included a video where I’m working on one my visual rehabilitation activities. We are working with lenses/prisms to attempt to improve some of my visual balance disturbances.

*WARNING* The video is shaky. May cause visual disturbances.  I am working on getting a better video/camera. :)

[quicktime]http://abledis.com/wp-content/uploads/2012/02/HPIM1022.mov[/quicktime]

Much love,
Marissa