Posted by: seattledizzygroup | September 19, 2020

Show Your Spirit for Balance and Falls Prevention Awareness

Celebrate and Help Raise Balance & Falls Prevention Awareness with Seattle Dizzy Group!

Join Seattle Dizzy Group in celebrating Balance Awareness Week (September 13-19, 2020) & Falls Prevention Awareness Week (September 21-25, 2020)!

This year, instead of meeting in-person for our annual Walk for Balance event, we hope you’ll participate with us virtually.

Show Your Dizzy Spirit!

Online Photo/Video Contest & Giveaway

September 13 – 25, 2020

Show your spirit and enter Seattle Dizzy Group’s online contest and giveaway by posting a balance-focused photo or short video on social media to help raise awareness about vestibular disorders and show support for those living with dizziness and imbalance.

We will give “Dizzy Spirit Awards” for Wearing the Most Blue for Balance, Most Dizzy Group Spirit, Best Use of Balance Aids, Perseverance, etc.

We would also like to honor an Outstanding Balance Support Person (nominate someone special who helps you).

*Each contest participant will also be entered into a drawing to win giveaway items such as gift cards & Seattle Dizzy Group gear!*

Have fun! We are very excited to see your creative entries!

Details:

Use hashtags #DizzySpiritAwards #SeattleDizzyGroup and post *publicly* on Facebook, Twitter and/or Instagram an original photo or short video (5 minutes or less) which shows how you are celebrating Balance Awareness Week and Falls Prevention Awareness Week.

(For example, walking for balance, or doing a balance challenge exercise, or dressing for balance awareness, or expressing yourself through artwork, photography, poem, or song, etc.).

Or, you may share an original photo or video about how you personally find balance or prevent falls, or how you cope with or overcome vestibular challenges, etc.

We are also happy to receive your photo or video by email at: info@seattledizzygroup.org

Contest runs Sunday, September 13th – Friday, September 25th

-Winners will be announced by September 30th.
-Prizes will be mailed to winners in October.
-Anyone in the WA State vestibular community may enter, including supportive friends and family.
-You may submit multiple photos or videos, but will only be entered once into the giveaway drawing
-Any photos or video submitted for this contest may be featured on Seattle Dizzy Group social media accounts and/or on our website, etc.

This contest and giveaway is generously sponsored by
Cascade Dizziness & Balance PT.

Also Join Us Online For:

Help Raise Awareness!

Now in its 23rd year, Balance Awareness Week is an annual campaign to broaden the public’s understanding of balance-related vestibular disorders, which affect more than 69 million Americans (nearly 1 in 5 people in the US). The word “vestibular” refers to the inner ear and brain — the complex, mysterious human system that controls our sense of balance. The goal of Balance Awareness Week is to raise awareness and increase understanding of vestibular disorders (such as Meniere’s Disease, BPPV or Vestibular Migraine) and associated symptoms (dizziness/vertigo, imbalance, headache, visual issues, hearing loss, tinnitus, brain fog, etc.).

This year’s theme is “Uncovering the Mystery” of vestibular diagnosis. While many vestibular/balance conditions are incurable, getting a faster and more accurate diagnosis and receiving effective treatment as well as learning coping strategies and having a supportive community, can greatly improve patients’ quality of life.

VeDA’s first Virtual Vestibular Conference takes place this year in conjunction with Balance Awareness Week and brings together vestibular experts and patients from around the world to explore the mystery of the vestibular patient experience.

More info about Balance Awareness Week: 

www.vestibular.org/BAW

The first week of Fall each year is Falls Prevention Awareness Week with the goal of spreading the important message that falls are not a part of normal aging and raising awareness about how to prevent falls among older adults.

More info about Falls Prevention Awareness Week:  

www.ncoa.org/healthy-aging/falls-prevention/falls-prevention-awareness-week

 

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | August 31, 2020

Connecting Virtually with a Vestibular Disorder

Overcoming Technology Challenges with Vestibular Disorders

As we continue to be more isolated at home these days, we are all relying on technology to get through and stay connected virtually. Everyone is striving to adjust to working remotely, learning online, and utilizing video conferencing and telemedicine, etc.

Technology offers many benefits, but it can also come with unexpected challenges for those who are struggling with a vestibular/balance disorder. For example, computer screens and blue light from electronic devices may cause or exacerbate symptoms such as visual issues, dizziness, migraine/headache, nausea, sensory overload, etc. Additionally, those with hearing impairment may have trouble with accessibility and communication. As a result, it may be difficult for some people to participate in online activities or receive support remotely or maintain relationships virtually.

With some trial and error to figure out what works (and what doesn’t), hopefully, those living with a vestibular disorder can find ways to overcome the challenges so that they may better utilize technology and connect virtually with others.

Upcoming Online Events for Balance Awareness Week (Save the Dates!)

BAW 2020 Uncovering the Mystery logo

Uncovering the Mystery Virtual Conference (September 14-18th)

VeDA’s first Virtual Vestibular Conference takes place this year in conjunction with Balance Awareness Week. Mark your calendars on September 14-18, 2020! You don’t want to miss this unique online conference, which brings together vestibular experts and patients from around the world to explore the mystery of the vestibular patient experience.
 
Topics include:
– Navigating the healthcare system
– Psychological impacts of vestibular disorders
– Does Vestibular Rehabilitation Therapy Work?
– What is Persistent Postural Perceptual Dizziness (PPPD)?
– Integrating Complementary & Alternative Treatments in Recovery
 
Reserve your space and register for each session individually.
 
 
BAW 2020 Boost Your Brains Balance edit2

Boost Your Brain’s Balance Zoom Video Event (September 19th)

In honor of Balance Awareness Week and Falls Prevention Awareness Week, Seattle’s Vestibular Therapy Specialists is hosting a virtual fundraiser on Saturday, September 19, 2020 from 12-2 pm.

A panel of specialists will discuss how to improve your brain’s balance to reduce dizziness and falls:
Dr. Mary Henry, Audiologist
Dr. Morgan Kriz, Vestibular Therapy Specialist
Mackenzie Schiltz, Registered Dietitian Nutritionist

Dr. Jeffery Singh, Ear Nose & Throat Doctor

Join Event:  zoom.us/my/brainbalance

More info: vestibularspecialists.com

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | July 31, 2020

Finding Another “New Normal” with Chronic Illness

Adapting to Changes While Chronically Ill

As the coronavirus pandemic continues, everyone is finding ways to adapt to changes and embrace a “new normal.” Those who have previously adjusted to the challenges of living with a “new normal” of chronic illness are now having to adapt to another “new normal.” People in the chronic illness community who are already struggling with debilitating symptoms may find this process especially difficult or overwhelming.

In this season of transition, if you have a loved one with chronic illness, please consider reaching out and offering your help and support.

Article: 9 Ways to Support Chronically Ill Folks During Covid-19 Outbreak

These articles discuss finding a “new normal” with chronic illness:

How To Cope with the “New Normal” of the Coronavirus Pandemic

Three Things to Remember in the “New Normal” with Chronic Illness

Your New Normal – How to Adjust to Life with a Chronic Illness

Learning to Live with a Chronic Illness & Your “New Normal”

Learning to Live Well with Chronic Illness/Conditions

Stages of Adjusting to Chronic Illness

Mindfulness & Stages of Grief in Chronic Disease

10 Challenges Faced by Those with Chronic Pain & Illness

20 Tips for Living Well with Chronic Pain & Illness

See Also:

Seeking Balance in Challenging Times

Strategies for Calming Anxiety Amidst Uncertainty

Ways to Cope While Socially Isolated

Unmasking Invisible Chronic Illness In a Changing World

Additional “New Normal” Blog Posts

*Always use your best judgement regarding personal health decisions and stay home when you are sick. Consult your doctor for medical advice.*

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | June 30, 2020

Unmasking Invisible Chronic Illness in a Changing World

Accommodating the Chronically Ill Amidst the Current Global Health Crisis

My Personal Story & Thoughts

By Cheryl Rowe

(Founder/Owner/Director of Seattle Dizzy Group)

The past few months have been a challenging time for everyone across the globe.  We have all been affected by the coronavirus pandemic in various ways. Each of us is focusing on health and striving to follow new guidance. We are making an effort to adjust and find some sense of normalcy within this temporary abnormal. Everyone is trying their best, but some are having more difficulty adapting than others.

I have personally lived with a disabling vestibular (inner ear) disorder for 20 years, so I am used to facing daily challenges and have had a lot of practice adjusting to changes. That being said, I have been surprised just how difficult the past few months have been for myself and others in the chronic illness community, especially those of us with “invisible” conditions which may be horribly debilitating yet not always obvious to those around us. I’m sharing my story and thoughts to help raise awareness.

My ongoing health situation is always tenuous and even my “best” days require much effort as I struggle with a constellation of constant vestibular symptoms (including dizziness/vertigo, imbalance, nausea, headache/migraine, visual disturbances, brain fog/cognitive issues, fatigue/exhaustion, etc.).  Under “normal” circumstances, I manage these disabling chronic symptoms with vestibular therapy as well as regular holistic health treatments (chiropractic, acupuncture, massage, craniosacral, etc.).

Unfortunately, since the strict lockdown began in Washington State at the end of March, I have been unable to access much-needed medical care. I was without any health therapies at all for more than a month, and even now at the end of June only a few of my regular providers are seeing patients on a limited basis. This lack of treatment greatly impacted my already fragile health condition and resulted in a major set-back and huge flare-up of symptoms leaving me terribly incapacitated and unable to be out of bed for more than a couple hours most days (often having just enough energy to make and eat one meal a day and occasionally shower).

Honestly, I’ve been more sick and isolated than I’ve been in years and years. (Usually, with supportive medical treatments, I’m able to eat normally and shower frequently and enjoy some moderate activities outside of the house a few times per week). These months without adequate medical care have shown me just how important regular health therapies are for my overall quality of life. During these difficult months, I’m grateful that I have a loved one who has helped me with basic needs such as grocery shopping. It’s been a tremendous struggle, but I’ve been hanging in, relying on faith, and taking it one day at a time.

I’m relieved to finally be able to see a few medical providers again, but I have found it to be unexpectedly challenging to receive treatment due to new health protocols. I quickly discovered how sensitive I am to wearing a face mask and to certain cleaning product scents (even hand sanitizer).

I have breathing issues (unrelated to my vestibular disorder) that are usually mild and well-managed, so it has been surprising to find that I can’t breathe well after only a few minutes of wearing even a thin cloth face mask. Just wearing a cloth mask for a short time causes me to struggle with increased breathing issues for a day or two afterwards. In light of this, most medical providers have been willing to accommodate my breathing issues (for example, allowing a mask exception or taking frequent breaks).

One of my providers was not willing to accommodate my breathing issues and, unfortunately, I ended up suffering a severe adverse reaction. For this appointment, I thought I would try a surgical mask, hoping that it might work better for me than a cloth mask. But, just walking into the clinic, I noticed that the surgical mask obscured my view of my feet and my surroundings enough that it substantially increased my imbalance and consequently my fall risk.

Within about 15-20 minutes of wearing the surgical mask I was starting to feel extremely disoriented and dizzy (to the point that I had to try to visually stabilize to suppress symptoms by focusing on a spot on the ceiling).  I thought that I could push through these symptoms knowing how badly my body needed treatment.  However, only a few minutes later (about 25-30 minutes of wearing the mask), my neck muscle started spasming and then I quickly went into full body spasms/convulsions. 

Having this severe of a reaction, I needed to end my appointment abruptly and felt I really should take my mask off immediately, but my provider seemed to insist that I keep it on until I was out of the clinic. I was so dizzy and imbalanced getting out of my chair and standing that I fell back into a nearby table and had trouble getting on my shoes and collecting my belongings, etc.  I managed to stumble out of the clinic despite not receiving any assistance, but it took a few minutes of sitting right outside the door without the mask gasping for air to even have the ability to walk to the car where my mother was waiting for me. 

The body spasming continued (to a lesser degree) for over an hour and gradually subsided.  This also triggered a bad migraine (which ended up lasting for a few days).  Thank goodness my mother who is a nurse was there to help me get stabilized (we couldn’t even leave the parking lot for over an hour) and she was able to drive me home.

It’s been a couple of weeks since this happened and I’m still suffering some lingering neurological symptoms.  (One of my vestibular specialists warned me that it might take a few weeks for my brain and nervous system to fully re-calibrate from the insult).

My body is obviously very sensitive after 20 years of chronic vestibular dysfunction, especially after not being able to get needed medical treatments the past few months which has greatly flared my symptoms.

I had no idea that I would have such a severe adverse reaction from wearing a mask or that it would impact me for so long afterwards.  This traumatic experience proves just how dangerous it is for me to wear a face mask for more than a few minutes!

I realize that everyone is on a steep learning curve these days and this was an unexpected/unintentional outcome.  My hope in sharing my story is that it might help increase awareness of potential issues in order to prevent someone else from being injured.  I found out the hard way the importance of listening to your body’s warning signs and not trying to push through potentially dangerous symptoms caused by wearing a face mask.

Some people with vestibular disorders may be able to wear a face mask (especially if only for a short time), but others may find it impossible to wear a mask for various medical reasons. For example, those with hearing/communication problems as from Meniere’s Disease, those with breathing issues as from autonomic nervous system dysfunction or anxiety, those for whom it triggers Vestibular Migraine or severe nausea, and those for whom it causes or exacerbates lightheadedness/dizziness/imbalance which increases fall risk, etc. (A face shield might be an alternative option for some people, but beware the curved plastic may cause increased dizziness and imbalance for those with vestibular disorders which could be unsafe).

All state and county mask guidance provide medical exemptions for people who find wearing a mask difficult or dangerous. The Americans with Disability Act (ADA) also preserves disabled people’s right to full and equal access in society and protection from discrimination.

It’s important for medical providers to recognize medical exemptions and try to work together with their patients on appropriate accommodations so that those who need care can continue to receive treatment. Likewise, service providers and businesses should strive to appropriately accommodate those with medical exemptions. (It would be helpful if willingness to accommodate is reflected in any signs posted, so that people with disabilities feel welcome).

Living with a disability is challenging even under “normal” circumstances. I’m very concerned about the continued negative impacts upon the health and quality of life of those in the chronic illness community if accessibility issues are not addressed and accommodated. This will require compromise.

If someone shares with you that they are having or have had an adverse reaction to wearing a face mask, please believe them. Don’t presume that they are exaggerating or overreacting. Many people seem to think that wearing a mask is “easy” or “tolerable” because that’s how it feels to them and they may not realize how difficult or dangerous wearing a mask may be for someone else.  Even if you don’t fully understand, please don’t dismiss someone else’s experience. Those of us who live with chronic “invisible” conditions don’t expect others to always understand our struggles, but we want to feel validated, cared about, and supported.

People who are unable to wear a face mask, should practice good hygiene and make an effort to stay 6 feet or more away from others in public. (Masks are an added precaution for when people are closer).

Always be sure to give anyone not wearing a mask the benefit of the doubt that they have a medical condition which makes it difficult or dangerous to wear a face covering. Don’t automatically assume an unmasked person is “selfish.” Many chronic health conditions may seem “invisible” but may actually be quite disabling. If you feel uncomfortable, just stay further away. But, please be kind and respectful and do not say anything negative or shame others since you never know someone else’s personal circumstances.

Keep in mind that chronically ill people like myself have been almost completely isolated for weeks/months, so we have very little risk of being infected (especially in comparison to others who have been out in public frequently or in large gatherings). When we occasionally venture out of our house for errands, those of us with disabilities who cannot safely wear masks but are properly physically distancing simply wish to be able to get our errands done in peace.

Sadly, I’ve heard many concerning stories in online chronic illness groups of disabled people (especially those with “invisible” conditions) being shamed and harassed for not wearing a face mask in public—even when they are striving to keep physically distanced. In an effort to avoid the horrible contempt of others, a number of chronically ill people have unfortunately passed out/fallen down and gotten hurt in stores trying to comply with wearing a mask despite it being unsafe for them. Those with medical exemptions are also being wrongly denied service at certain businesses. Some of the already marginalized and struggling people in the chronic illness community are so discouraged by this lack of compassion and accommodation that at this point they are openly contemplating suicide. This discrimination of vulnerable and suffering people breaks my heart and needs to stop!

Please, let’s all try to offer more sensitivity and support towards others. Let’s strive to care for each other and make accommodations for one another as we adjust to changes and get through this global health crisis together.

Information from the Centers for Disease Control (CDC):
www.cdc.gov/coronavirus/2019-ncov/index.html
www.cdc.gov/…/pro…/infectioncontrol/maskguidance.htm
wwwnc.cdc.gov/eid/article/26/5/19-0994_article

See also:

9 Ways to Support Chronically Ill Folks During Covid-19 Outbreak

Seeking Balance in Challenging Times

Strategies for Calming Anxiety Amidst Uncertainty

Ways to Cope While Socially Isolated

*Always use your best judgement regarding personal health decisions and stay home when you are sick. Consult your doctor for medical advice.*

*This personal story and thoughts are not meant to provide medical advice and do not necessarily reflect the various opinions and experiences of others in the vestibular community or the views of Seattle Dizzy Group.*

Post updated July 2020.

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | May 31, 2020

Seeking Balance in Challenging Times

Balance walking

Adjusting to New Health Challenges

In this challenging and uncertain time, everyone is doing their very best to adapt to new recommendations and stay as healthy as possible. Especially those who are already struggling with a chronic illness may feel really overwhelmed by the many recent changes. 

As the coronavirus pandemic continues, it’s important to try to find/maintain a sense of balance and “normalcy.”

We all have unique circumstances and different needs to consider, so let’s be sure to offer sensitivity and kindness towards others and strive to support each other as we get through this crisis together!

Article: 9 Ways to Support Chronically Ill Folks During Covid-19 Outbreak

Suggestions for coping with and adjusting to new health challenges including special accommodations for the chronically ill:

Social Considerations

As society moves forward towards normalcy, all of us must carefully consider and balance the risks/benefits of our choices including social interactions.  We need to be intentional to find ways to include and accommodate vulnerable people (such as those who are older or chronically ill), who are advised to continue to shelter at home as much as possible.

“We are starting to enter into a new normal. Restrictions are being lifted and we are beginning to decrease social distance, yet we must continue to work together to reduce the risk of viral transmission. Until accurate testing is available and herd immunity is achieved, this can be achieved through self-awareness and communication.

Covid CARE calls in four specific elements to consider and discuss with others as you start broadening your social circles: Container, Agreements, Risk Tolerance, Etiquette. Covid CARE provides us a model in which to move forward together.”

Quote from Medium Article: COVID CARE – A Way Forward to Opening Up Social Circles

“If history is our guide, nobody is going to offer us these accommodations on a silver platter. We’ll have to remind our employers, our teachers, our co-workers, our classmates, and even our friends that we want and deserve to participate in society as it re-opens. We’ll have to be determined, loud and insistent on our right to be included. We’ll have to remind people that the whole world operated over the computer for months during the pandemic and that chronically ill people can continue to stay connected in meaningful ways from their homes.

COVID-19 has brought home to us how interconnected we all are. Chronically ill people are a valuable part of this web of life. As we remake the world in the wake of this virus, let’s insist that we matter just as much as people who have the privilege of health.”

Quote from Psychology Today Article: Covid-19 & Chronic Illness

Physical Distancing & Masks

To help stop the spread of coronavirus, everyone is being urged to physically distance and wear face coverings when within 6 feet of others in public. (Mask policies do not apply to anyone who cannot wear a face covering for medical reasons. The Americans with Disabilities Act (ADA) grants people with disabilities equal access in society and protection from discrimination. Always give the benefit of the doubt to those with “invisible” chronic illness who require exemptions/accommodations and treat them with kindness and respect).

People with vestibular disorders may find it difficult or impossible to wear a face covering for various medical reasons. This includes those with hearing/communication problems as from Meniere’s Disease, those with breathing issues as from autonomic nervous system dysfunction or anxiety, those for whom it triggers Vestibular Migraine or severe nausea, and those for whom it causes or exacerbates lightheadedness/dizziness/imbalance which increases fall risk, etc.

Even with a vestibular disorder, you may find that wearing a face covering for a short time is tolerable (especially if you are able to take frequent breaks to breathe freely). But, if you are unable to wear a face covering, then just practice good hygiene and make an effort to stay 6 feet or more away from others. (Masks are an added precaution for when people are closer). You might also consider the option of asking others for help with errands so that you don’t have to go out in public as often.

Article: Coronavirus Masks Pose Challenges for Those Hard of Hearing

Article: Advice for People Who Have Difficulty Breathing in a Face Mask

More information from the Centers for Disease Control (CDC):
www.cdc.gov/coronavirus/2019-ncov/index.html
www.cdc.gov/…/pro…/infectioncontrol/maskguidance.htm
wwwnc.cdc.gov/eid/article/26/5/19-0994_article

Grocery Shopping/Delivery

Delivery services are probably a safer option right now, but shopping online isn’t a viable (accessible, affordable) option for everyone. If you are concerned about going to a store during Covid-19, follow this protocol based on recommendations from the Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA) and several health experts.

Article: How To Shop Safely During Coronavirus

For food deliveries, you may wish to choose a no contact option.

Article: Coronavirus No Contact Food Delivery

Telemedicine/Telehealth

“Telemedicine isn’t new, but it’s been utilized more than ever during this stressful time of quarantine and self-isolation. While virtual visits aren’t the answer to every medical problem, you might be surprised to learn that many conditions can be treated effectively from the comfort of your couch.”

Article: How Telemedicine Is Enhancing Healthcare During Coronavirus 

See also:

Strategies for Calming Anxiety Amidst Uncertainty

Ways to Cope While Socially Isolated

*Always use your best judgement regarding personal health decisions and stay home when you are sick. Consult your doctor for medical advice.*

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | April 30, 2020

Ways to Cope While Socially Isolated

Coping in Times of Social Isolation

People living with chronic illness are often housebound due to debilitating symptoms. The resulting social isolation may cause or exacerbate mental health challenges such as anxiety and depression.  It is also common to feel lonely and bored when stuck at home.  The emotional impacts of being socially isolated may be especially stressful and difficult to cope with during uncertain times like the current coronavirus pandemic.

Helpful articles:

How to Cope with Loneliness During the Coronavirus Pandemic

Preventing Coronavirus Loneliness from Social Isolation: Advice for Chronic Illness Patients

Coronavirus Boredom When You’re Cooped Up with Chronic Illness: 25+ Ideas for Spending Your Time

40 Things to Do While You’re Stuck at Home Because of Covid-19

6 Suggestions for Making the Most of “Sheltering in Place”

See also:

Strategies for Calming Anxiety Amidst Uncertainty

Coping with the Isolation & Loneliness of Chronic Illness

Ideas for When You are Housebound with Chronic Illness

Getting Through Difficult Days with Chronic Illness

Importance of Self Care

 

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | March 31, 2020

Strategies for Calming Anxiety Amidst Uncertainty

Ways to Manage Anxiety in Uncertain Times

Uncertainty can be very stressful and challenging for those living with chronic illness. The unpredictability of symptoms and loss of control and stability often lead to feelings of anxiety which can be overwhelming. 

These articles discuss the emotional impacts upon the chronically ill and offer strategies for calming anxiety amidst uncertainty.

Anxiety & Vestibular Disorders:

Emotional Aspects of Vestibular Disorders

Anxiety, Vertigo, and the Path to Inner Calm

Why Anxiety Often Accompanies Balance Disorders & What To Do About It

Vestibular Migraine Linked to Increased Anxiety

Overcoming Anticipatory Anxiety from Vestibular Migraine

Uncertainty & Chronic Illness:

Chronic Illness & Uncertainty

How Chronic Illness Fans the Flame of Uncertainty

How to Cope with Uncertainty

Learning to Live Gracefully with Change & Uncertainty

Living with Uncertainty

Coping with Anxiety & Uncertainty During the Coronavirus Pandemic:

Living with Worry & Anxiety Amidst Global Uncertainty

Living with Uncertainty During Covid-19

7 Tips to Manage Coronavirus Anxiety

See Also:

Finding the Balance Within the Mind Body Connection

Staying Grounded in an Unstable World

 

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | February 29, 2020

Rare Diseases Are Not So Rare

February 29th, 2020–the rarest day of the year–is Rare Disease Day!

An estimated 300 million people worldwide or about 5% of the world’s population are living with a rare disease.

The number impacted globally shows Rare Diseases are not so rare!

If you don’t have a rare disease, you might know someone who does.

Uncommon vestibular disorders such as MdDS are considered rare diseases.

What is Rare Disease Day?

Rare Disease Day is an international event that takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

Building awareness of rare diseases is so important because about 1 in 20 people will live with a rare disease at some point in their life.

Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.

The message for Rare Disease Day 2020 is:
Rare is many worldwide.
Rare is strong every day.
Rare is proud everywhere.

Article: What Is a Rare Disease?

Video: 10 Things You May Not Know About Rare Diseases

To learn more about rare diseases or find out how you can get involved and help raise awareness, visit: www.rarediseaseday.org

Misconceptions about Living with a Rare Disease

It’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare.

The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked their communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, there are many who think it’s a much easier path than it is. The struggle to receive access to treatment and care, as well as a knowledgeable medical team is very real.

Article:  25 Misconceptions about Living with a Rare Disease

 

See also:

Be A Chronic Illness Ally

 

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | January 31, 2020

Take A Step Towards Balance In 2020

Take A Step Towards Balance In 2020!

“Every Journey Begins With A Single Step” – Maya Angelou

Seattle Dizzy Group is a respected leader in the vestibular and balance disorders patient support community with increasing national and global reach. (Read about our 2019 Highlights below). We hope you will join us in 2020 and help us continue to grow, provide community, and offer support to people living with chronic dizziness and imbalance–in Seattle and beyond.  With your help, we can continue to expand community outreach and involvement (including hosting professional speakers on various vestibular/balance topics and connecting with local health providers/resources) and also increase our advocacy efforts to raise awareness about vestibular and balance disorders (including participating in Balance Awareness Week with our annual Walk for Balance Event, see Making a Difference for Balance Awareness).

Get Involved!

Seattle Dizzy Group is organized entirely by volunteers (the majority who are personally impacted by chronic dizziness and imbalance). We invite you to take a step towards balance with us in 2020! We would love for you to get involved and contribute to our group however you are able. Spread the word about Seattle Dizzy Group and invite others to join us. Share Seattle Dizzy Group information and resources with others. Participate in online discussions. Help with hosting in-person meetings and activities (be a greeter, assist with room set-up and take-down, bring snacks, provide transportation, etc.). For more info, email: info@seattledizzygroup.org.

We are an independent, self-supporting not-for-profit group funded solely through donations. As we continue to grow and expand our outreach efforts, we are naturally incurring more expenses. Our goal is to continue to offer at no charge support and resources to those in need in the vestibular community–in Seattle and beyond. Please consider supporting Seattle Dizzy Group with a financial gift to help us keep growing and thriving in 2020!  (Any donation amount is greatly appreciated!).

Ways your financial gift helps Seattle Dizzy Group:

  • Provides materials, supplies, and hosting for monthly support group meetings.  (Each meeting costs about $25, or about $300 annually).
  • Provides thank you gifts for guest speakers. (As funds allow, we strive to honor speakers with about $25 value gift, or about $100 annually).
  • Provides administrative support, online services/resources, and website hosting, etc.  (Administrative costs are about $500 annually).
  • Provides funding for Balance Awareness Week event(s) and other group activities.  (Costs may be about $50-$100 or more per activity).
To give Seattle Dizzy Group a donation of any amount by credit card or PayPal, click the “Donate” button below.

PayPal Donate

(Gifts to Seattle Dizzy Group are not tax deductible at this time)

THANK YOU for your support!

2019 Highlights

  • In September, we hosted our Ninth Annual Walk for Balance Event in celebration of Balance Awareness Week and Falls Prevention Awareness Day/Week with a goal of raising awareness for vestibular and balance disorders and showing our support for people living with chronic dizziness and imbalance. We started the event with a yoga warm-up activity and then invited others to “Walk a Mile in Dizzy Shoes” with us at Green Lake.  We increased our impact during our walk by wearing blue, Seattle Dizzy Group gear, balance awareness t-shirts, and Walk for Balance badge stickers as well as carrying balloons, flamingos (balance “mascots”) and balance awareness signs. After walking together, we honored event participants with our fifth annual Dizzy Spirit Awards. As a part of the celebration, we enjoyed food and giveaways. We also had a balance awareness Information Fair throughout the event. It was a fun day that hopefully helped lift spirits and build momentum for the cause. We received wonderfully positive feedback from participants, and we are excited to continue to grow the event in 2020!
  • In October, we celebrated 13 years together as a support group!

  • In 2019, we continued to expand the Seattle Dizzy Group website/blog and online services/resources and reached thousands of people around the globe. (For example, our website/blog was viewed about 10,000 times in 2019 by visitors from over 100 different countries worldwide!). Additionally, we gained followers on Facebook and  Twitter, and increased membership of our MeetUp Group.  We appreciate everyone who connected online with Seattle Dizzy Group in 2019 and are especially grateful for all those who helped get the word out about our group and shared our posts/resources with others.

See also: Past Annual Highlights

© Copyright 2020, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | December 31, 2019

Communicating with Hearing Loss

Communication Tips for Hearing Impairment

Hearing loss is one of the most common chronic health conditions, affecting about 1 in 6 people. Most of us know someone with some degree of hearing impairment. The ability to speak, hear, and understand language and conversation are central to almost every aspect of daily life. Hearing loss hinders communication and impacts relationships. Hearing aids can help, but they do not “cure” hearing loss or return hearing to “normal.” Even with hearing aids, communication can be difficult. 

These tips can help improve communication despite hearing challenges: 

 

© Copyright 2019, Seattle Dizzy Group. All rights reserved.

Older Posts »

Categories

Seattle Dizzy Group

Providing support & community for people living with chronic dizziness & imbalance -- in Seattle & beyond

Cascade Dizziness

Just another WordPress.com site

%d bloggers like this: