Balance Awareness Week is Sept 15 – 21, 2014


The goal of Balance Awareness Week is to reduce the time it takes to

diagnose a vestibular disorder. We help patients recognize the symptoms

of a vestibular disorder and urge them to seek help from a professional

specialist. We also encourage family and friends to learn more about vestibular

disorders so they can support their loved ones’ who are suffering from dizziness

and other debilitating symptoms. For more information go to:

VEDA’S GOAL: $60,000

RAISED: $52,082



We will be meeting on Saturday Sept 20th 

12 – 2 pm @ Pacific Balance and Rehabilitation Clinic

Two Topics for September:

First – we want to honor Balance Awareness Week

Let’s all bring our favorite exercise, tip or body awareness cue to share with the group. Also bring a “most-hated” or “most-irritating” exercise and why tell us why you hate it so.

PBRC will let us spread out in their exercise room. We will also show you a few exercises that might help with our balance issues.

Through this, we can talk about balance awareness, and thereby honor Balance Awareness Week.

Second: Lets do a little brainstorming/chatting about what we would like to discuss in the upcoming months. Guest speakers? Also talk about ways to expand/improve/strengthen our VBSG!

As always……feel free to bring something to share as we have lunch together.

Remember……your friends and family members are always welcome!



Hot Stuff!

Well summer has arrived and we are experiencing some hot weather by northwest standards! Do you know what heat exhaustion looks like?

Heat exhaustion is a heat-related illness that can occur after you’ve been exposed to high temperatures for several days and have become dehydrated.

There are two types of heat exhaustion:

  • Water depletion. Signs include excessive thirst, weakness, headache, and loss of consciousness.
  • Salt depletion. Signs include nausea and vomiting, frequent muscle cramps, and dizziness.

Although heat exhaustion isn’t as serious as heat stroke, it isn’t something to be taken lightly. Without proper intervention, heat exhaustion can progress to heat stroke, which can damage the brain and other vital organs, and even cause death.

Symptoms of Heat Exhaustion

The most common signs and symptoms of heat exhaustion include:

  • Confusion
  • Dark-colored urine (a sign of dehydration)
  • Dizziness
  • Fainting
  • Fatigue
  • Headache
  • Muscle cramps
  • Nausea
  • Pale skin
  • Profuse sweating
  • Rapid heartbeat

Treatment for Heat Exhaustion

If you, or anyone else, has symptoms of heat exhaustion, it’s essential to immediately get out of the heat and rest, preferably in an air-conditioned room. If you can’t get inside, try to find the nearest cool and shady place.

Other recommended strategies include:

  • Drink plenty of fluid (avoid caffeine and alcohol).
  • Remove any tight or unnecessary clothing.
  • Take a cool shower, bath, or sponge bath.
  • Apply other cooling measures such as fans or ice towels.

If such measures fail to provide relief within 30 minutes, contact a doctor because untreated heat exhaustion can progress to heat stroke.

After you’ve recovered from heat exhaustion, you’ll probably be more sensitive to high temperatures during the following week. So it’s best to avoid hot weather and heavy exercise until your doctor tells you that it’s safe to resume your normal activities.

Stay cool friends!

Repost from




June Family and Friends Potluck!

Our June meeting will be our Family and Friends Potluck!

Invite your family and friends to join us. This meeting will give us an opportunity to  show our appreciation for all of their support!!!! It will also give our loved ones a chance to share their perspective and have an opportunity to learn more about the challenges we face.

 Please join us June 28th

 Bring a dish to share for our potluck!

Time: 12 – 2pm


Pacific Balance and Rehabilitation Clinic

400 Mercer St  Suite 302

Seattle, WA


Please note:

There will be no meeting in July.

We look forward to seeing you on June 28th and meeting your Family and Friends!


June is Mal de Debarquement Month

What is Mal de Debarquement?

Also known as Disembarkment Syndrome, Mal de Débarquement Syndrome (MdDS) is a rare disorder of perceived movement that most often develops following an ocean cruise or other type of water travel. MdDS has also been reported to follow air, train, and automobile travel, and less commonly after sleeping on a waterbed, and frequent use of high speed elevators. Symptoms usually begin shortly after the cessation of the motion stimulus and are often increased when in an enclosed space or when attempting to be motionless (sitting, lying down, or standing in a stationary position). The motion sensation may seem to disappear when in passive motion such as in a moving car, airplane, or train.

While MdDS most commonly presents itself after travel, for some there is no known motion event; the onset appears to be spontaneous. MdDS may persist for months to years.

Common symptoms include a persistent sensation of motion such as rocking, swaying, tumbling, and/or bobbing. This sensation of motion is often associated with anxiety, fatigue, difficulty maintaining balance, unsteadiness, and difficulty concentrating (impaired cognitive function). Relief from symptoms may be realized when riding in the car or participating in other motion experience. This can be important feature in the diagnosis of MdDS.

Frequently Asked Questions

Are there other names for MdDS?

MdDS is an abbreviation for Mal de Débarquement Syndrome (a French name) which translates into sickness upon disembarking (leaving a boat or other vehicle). This disorder is also known as Disembarkment Syndrome or colloquially as landsickness. It is less commonly known as Persistent Mal de Debarquement (PMdD) and Rocking Vertigo.

Several years ago, I had MdDS that spontaneously resolved. Will I develop this again if I go on another cruise?

Some individuals who have had MdDS that had resolved subsequently redeveloped symptoms after a subsequent cruise. (However, there are some who did not.) Many describe a more prolonged period of MdDS symptoms with each episode. Therefore, the recommendation is to avoid further cruises to minimize the likelihood that MdDS will recur.

I have MdDS. Will symptoms become worse if I go on a cruise or undertake extended travel by air, train, or car?

Not necessarily. However, some individuals have described a transient increase in symptoms after these type of motion experiences.

When will this be over?

In most individuals who develop symptoms of MdDS following a cruise or other prolonged motion experience, the symptoms of MdDS  (rocking, bobbing, swaying) often gradually dissipate and disappear altogether. In general, this is more likely to happen for those who are younger. But, for a few and with age, these symptoms may persist for an extended interval.

Where can I go to get diagnosed?

This is sometimes difficult since many health care providers are unaware of MdDS. A list of possible providers is available on this site.

Is there a cure?

Unfortunately, no.

Is there a treatment which reduces symptoms?

Some are benefited with medications and vestibular rehabilitation therapy. And, a regular exercise program seems to help many.

Are MdDS symptoms worse during a woman’s period (menses)?

Many women experience increased symptoms before or during their menstrual cycle. MdDS is more common in women than men (9:1) and seems to be more common in perimenopausal (middle-aged) women, however, the role of hormones in the exacerbation/remission of MdDS symptoms is not understood.

Are there any clinical trials/research studies being conducted on MdDS?

This is a rare disease and research studies are similarly rare. To our knowledge, there are only two active research studies on MdDS. One is being conducted at the Laureate Institute for Brain Research (LIBR) by Dr. Yoon-Hee Cha. The other is underway at Ohio University by Dr. Brian C. Clark. Both of these studies are funded, in part, by this Foundation.

For more information go to:

Let’s Get Together!

Hard to believe it is June already!

We have just learned from Pacific Balance that the Rock n Roll Marathon will be June 21st. The marathon will be going on right outside their building. So…..Pacific Balance and Rehabilitation Clinic will be closed for June 21st.

Which means we need to change the date of our June meeting.

We will be meeting on June 28th.

Our June meeting will be our Family and Friends Potluck!

Invite your family and friends to join us. This meeting will give us an opportunity to  show our appreciation for all of their support!!!! It will also give our loved ones a chance to share their perspective and have an opportunity to learn more about the challenges we face.

Come join us on June 28th.

Bring a dish to share for our potluck!

Time: 12 – 2pm


Pacific Balance and Rehabilitation Clinic

400 Mercer St  Suite 302

Seattle, WA

Six Common Misconceptions about the Chronically Ill

What those who are healthy rarely understand about those who are sick or in pain.

Published on December 5, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Misconception #1: If people look fine, they must feel fine.

Whether healthy or sick, it’s good for most people’s morale to try and look nice when they go out. I go out so seldom that I make an effort to look my best when I do. Sometimes I feel like a young child again, playing dress-up. That said, I always hope that if I see people I know, they’ll remember that looks can be deceiving. I’ve had people say to me, “You look great.” I know they’re trying to be nice, so I make an effort to respond graciously (with something other than, “Well I don’t feel great,” spoken in an irritated tone of voice). But the truth is…there I am, “looking great,” while my body is pulsating with flu-like symptoms, my muscles are aching, and my heart is pounding so hard that sometimes it feels as if it must be visible to others on the outside of my body! When people see someone whom they know is struggling with his or her health, I hope they’ll remember that they have days when they leave the house looking great but feeling terrible, perhaps from a bad night’s sleep or from lingering symptoms of an acute illness. If they understood that this is how most chronically ill people feel all the time, this common misconception would be well on its way to becoming an uncommon one.

Misconception #2: If people’s illness or pain were truly physically based, their mental state wouldn’t affect their symptoms.

If you’re not sick or in pain, I invite you to try this simple two-part exercise, so you can test this misconception out for yourself. Part One. The next time you feel under stress—maybe you’re angry at someone or worried about something—stop; close your eyes; and pay attention to how your body feels. Can you feel that your muscles have tightened? In addition, your heart may be beating faster and your whole body may be pulsating. You may even have broken out in a sweat. These are just some of the ways that mental stress manifests in the body of a healthy person.

Part Two. Keeping that stressful mental state in the forefront of your awareness, now imagine that you suffer from chronic pain and/or illness. What would happen? Your body would respond to the mental stress the same way it did for you as a healthy person. But now, that response would be in addition to your chronic, everyday symptoms. And if those symptoms happen to overlap with the physical symptoms that accompany mental stress—tightened muscles, racing heart, pulsating body and maybe even sweating—you can see how a person’s mental state can easily exacerbate the physical symptoms of chronic illness.

This is why keeping mental stress to a minimum is so important for the chronically ill. It’s important, but often impossible. Why? Because we live in the same stressful world that healthy people live in.

Misconception #3. Preparing for an event by engaging in “radical rest” will assure that when the occasion arrives, the chronically ill will be in better shape than had they not rested.

I can “radically rest” for several days in a row before a commitment (I’ve had some events for my new book that I’ve been doing this for) and yet, on the day of the event, feel terribly sick. Resting may increase the odds that I’ll be less sick than usual on the day of the event, but it’s no guarantee. When my granddaughter, Cam, turned six in September, I asked my husband to take me to her birthday party for a short time since it’s only an hour’s drive away. It would have been a treat to watch her interacting with her friends (something I rarely get to see) and to meet their parents. I rested for four days before the event. But that morning, I called my son in tears to tell him that I was too sick to attend. This misconception can lead to serious misunderstandings. For example, a week later, I was able to attend an event for my book. This could make it appear that I was choosing the book event over my granddaughter’s birthday party, but I was not (and thankfully my son understood this).

The truth is that the same amount of resting before each of the two events simply did not yield the same results. That’s the unpredictability of living day-to-day with chronic pain and illness. Not only can it be a source of disappointment and sadness, but if we don’t treat ourselves kindly and with compassion, it can lead to self-recrimination and be a source of terrible guilt.

Misconception #4: If chronically ill people are enjoying themselves, they must feel okay.

When an important occasion arises, people who are chronically ill have learned to put up with the symptoms of illness, including terrible pain, so they can try to enjoy what they’re doing, especially the enriching experience of being in the company of others. Please don’t assume that a person who is laughing is a person who is pain-free, ache-free, or otherwise feeling good physically.

Misconception #5: Stress reduction techniques, such as mindfulnessmeditation, are a cure for chronic pain and illness.

Stress reduction techniques can be effective tools to help with symptom relief and to help cope with the mental stress of ongoing pain and illness. However, unless a person suffers from a distinct disorder called somatization (in which mental or emotional problems manifest as physical symptoms), stress reduction techniques are not a cure.

Misconception #6: Being home all day is a dream lifestyle.

This misconception arises because, when healthy people entertain this thought, they’re not contemplating being home all day feeling sick and in pain! Put another way, would they say: “I wish I could be home all day with pain that no medicine can relieve”; or “I wish I could be home all day with flu-like symptoms that keep me from being able to read a book”? I doubt it.

My heartfelt wish is that people will become educated about what life is like for the chronically ill so that, some day soon, we can say these are six uncommon misconceptions.

Toni Bernhard is the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She was a law professor at the University of California—Davis for 22 years. Her blog is hosted by Psychology Today. She can be found online at

 © 2013 Toni Bernhard


The VBSG of the NW gratefully thanks Toni Bernhard for her permission to print this article.



Hello VBSG members

Due to illness and Easter weekend commitments – I am sorry to say we need to cancel our April meeting this Saturday.
So – NO MEETING this Saturday April 19th
We will meet
Saturday May 17th
12 noon – 2 pm
Pacific Balance and Rehabilitation Clinic
400 Mercer St  Suite 302
Our topic at the May meeting will be “Cognitive Aspects of Vestibular Disorders”
Members in our group often talk about what is called “Brain Fog” Please join us as we share our experiences and learn how to cope with this challenge. . 

Forecast : Brain Fog With a Chance of Amnesia

Can you relate?

I have a hard time concentrating and paying attention.

I’m easily distracted.

I can’t remember where I put the _______ ! (Too many possible answers)

What did I do yesterday?

Where did I park the car? Which car was I driving?

I can see your mouth moving but I have no clue what you are talking about.

I know you told me three times but can you tell me how to do that again?

What did I come upstairs to get?

My brain hurts!

The list could go on and on! This is the most frustrating part of living with a vestibular condition but it is all a part of “the new normal”. Stressing out about these changes only makes things worse. So what is one to do?


The worst thing one can do is give in and think that there are no ways to improve brain function. Research has shown that there are many ways to help strengthen our brains. It’s like a muscle – use it or lose it!

Meditation is a good starting point. While it may sound simple, meditation has been shown to have powerful and positive effects on brain function. Like anything new, it takes time. It’s easy for the mind to wander. A guided meditation is a great starting point – here is a link to just one of many (

Crossword puzzles, suduko puzzles, logic puzzles, jigsaw puzzles, books (audiobooks are great if the visual side of reading is a challenge), documentaries, music…….once again an endless list. Anything that challenges and stimulates your brain is a good thing!

Lastly, don’t underestimate the power of rest. Our challenged brain gets tired easily and resting is crucial. Whether it be a nap or just being in a quiet place – taking a few minutes to step out of all the stimulation gives our brains the opportunity to heal and recharge.


March Support Group Meeting

You’re invited to attend the upcoming meeting of the Vestibular & Balance Support Group of the NW, which meets monthly. Some meetings, like this one, will be open-ended discussions, while others will include a guest speaker. Family members and friends are always welcome to attend.

Please come and share your story, learn from others who understand what it is like to struggle with a vestibular disorder, and benefit from the expertise of professional guest speakers.


Saturday, March 15th, 12-2pm


Pacific Balance and Rehabilitation Clinic
400 Mercer St  Suite 302
Seattle, WA 

Topic: “Fatigue, Stress and Responsibilities”


Feel free to bring a dish to share. We will enjoy a lunch together while we talk about the challenges of living with a vestibular disorder
We hope you are able to join us!