Posted by: seattledizzygroup | October 31, 2015

Understanding Invisible Illness

“Invisible” Illness Isn’t Really Invisible If You Look Closely Enough

Nearly 1 in 2 people have a chronic health condition in the U.S. and about 96% of those people are suffering silently with an “invisible” illness (that does not have obvious visible signs).  For example, about 74% of Americans with severe impairments do not use a wheelchair, cane, crutches, or walker. (For more information, see:  www.invisibledisabilities.org and www.invisibleillnessweek.com).

Unfortunately, people living with an “invisible” illness such as a disabling vestibular or balance disorder are often misunderstood and stigmatized by society, including being derogatorily perceived as not sick, overreacting, exaggerating or faking symptoms, lazy, drunk, unintelligent, etc.  Though not always obvious to the onlooker, “invisible” symptoms of chronic vestibular dysfunction such as dizziness, imbalance, and fatigue may greatly limit a person’s day-to-day activity and negatively impact their overall quality of life.  For example, debilitating vestibular symptoms can significantly decrease the ability of a person to perform activities of daily living (such as bathing, dressing, or simply getting around inside the home) or to participate in social activity. (For more information, see: http://vestibular.org/understanding-vestibular-disorder).

Too frequently, people judge someone with an “invisible” illness by only a quick, superficial glimpse and make incorrect, negative assumptions. However, to truly understand the challenges and impacts of an “invisible” illness, you need to walk alongside someone and take care to notice how deeply their life has been changed as a result.  With closer observation, you can see that someone suffering from a disabling condition is faced with having to adapt to a “new normal” with many health struggles and various life-altering limitations.

It is important not to make someone with an “invisible” illness feel like they need to prove to you the degree of their impairment.  Regardless of your personal perception or feelings, one of the best things that you can say to support someone with an “invisible” chronic illness is simply “I believe you.”

These articles offer valuable insight regarding “invisible” illness as well as helpful tips for living with chronic illness and suggestions for loved ones:

Invisible Illness or Chronic Illness? What’s the Difference?

What is an Invisible Disability?

10 Ways to Make Your Invisible Illness Visible

Chronic Illness Facts

20 Tips for Living Well with Chronic Pain and Illness

14 Tips from 14 Years Sick

9 Things I’ve Learned Through 20 Years of Chronic Illness

7 Ways to Cope with Chronic Illness

Impact of Chronic Illness Upon Relationships and Social Activity

How to Cope with Unsolicited Advice When You Have an Invisible Chronic Illness

What Those with Chronic Pain or Illness DO Want to Hear

10 Things You Should Say to Someone with A Chronic Illness

15 Things Not to Say to Someone With A Chronic Illness or Invisible Illness

What Those with Chronic Pain or Illness DON’T Want to Hear

Part 2: What the Chronically Ill DON’T Want to Hear

The Spoon Theory

Help Raise Awareness for “Invisible” Illness

Invisible Illness Awareness Week

Invisible Disabilities Week

#InvisibleNoMore 

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

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Posted by: seattledizzygroup | September 20, 2015

Making a Difference for Balance Awareness

Together We Are Making A Difference!

Every September, the Vestibular Disorders Association (VEDA) hosts Balance Awareness Week to “Defeat Dizziness” with a goal of reducing the time it takes to diagnose a vestibular disorder by increasing awareness.

Though an estimated 35% of US adults aged 40 years and older (69 million Americans) have experienced vestibular dysfunction at some point in their lives, chronic vestibular disorders are quite difficult to diagnose.  Currently, a patient may need to consult as many as  four or five doctors over a period of several years to receive an accurate vestibular diagnosis.  Unfortunately, even with a diagnosis, there is no “cure” for most vestibular disorders and usually patients must adapt to a “new normal” with many health challenges and various life-altering limitations.  Additionally, people living with a chronic vestibular disorder are often misunderstood and stigmatized by society as having an “invisible” illness which may cause them to be negatively perceived as not sick, overreacting, exaggerating or faking symptoms, lazy, drunk, unintelligent, etc.  (For more information, see: www.vestibular.org).

While there is still much awareness that needs to be raised for vestibular and balance disorders, together we are making a difference.  It is very encouraging that there is now substantially more information and support available for people suffering from vestibular and balance disorders than there was just a decade ago.

Since our founding in 2006, Seattle Dizzy Group has been committed to supporting people living with chronic dizziness and imbalance including being a part of helping to make a difference during Balance Awareness Week. Seattle Dizzy Group has served as an inspiration and model for expanded Balance Awareness Week activities and events across the nation and beyond.

Over the years, Seattle Dizzy Group has participated in Balance Awareness Week with online and email awareness campaigns as well as contacting Congress regarding the challenges of living with a chronic vestibular or balance disorder (including the difficulty of being approved for Social Security disability benefits).  We have also hosted guest speakers on balance-related topics during Balance Awareness Week.

In 2011, Seattle Dizzy Group increased our efforts to raise awareness and came up with the idea to create Balance Awareness Wristbands.  At that point in time there was no official awareness color for vestibular and balance disorders, so our group voted and chose a royal blue color. Since then, we have been encouraging everyone to “Wear Blue for Balance.” (We’re excited that our Seattle Dizzy Group phrase has caught on and we’re seeing more and more online posts from around the world echoing “Wear Blue for Balance”). As for the BALANCE Wristbands we created, we send them to people worldwide who wear them with a sense of solidarity with others seeking balance.  We also encourage friends and family to wear our BALANCE Wristbands as a great, fashionable way to show they care. (Get a free BALANCE Wristband with a donation to Seattle Dizzy Group! www.seattledizzygroup.org/balance-wristbands).

Additionally in 2011, Seattle Dizzy Group started celebrating Balance Awareness Week with an annual walk in order to help create greater awareness for vestibular and balance disorders and show our support for people living with chronic dizziness and imbalance–in Seattle and beyond. We strive to grow and improve our Walk for Balance Event each year with increased community involvement.

Our 2013 Walk for Balance Event was mentioned in a King5 news article featuring our guest speaker Julie Grove MPT and the unique balance training environment she offers at Cascade Dizziness and Balance PT.

Last year, Seattle Dizzy Group chose “Walk a Mile in Dizzy Shoes” as the slogan for our one-mile awareness walk and we added to our Walk for Balance Event an Information Fair sponsored by local health and balance support providers.

  

This year Seattle Dizzy Group hosted our Fifth Annual Walk for Balance Event on Saturday, September 19th (www.seattledizzygroup.org/walk-for-balance).  We had a fun time and increased our impact during our walk at Green Lake by wearing blue, Seattle Dizzy Group gear, and Walk for Balance badge stickers as well as carrying balloons and balance awareness signs. (We were stopped numerous times on our walk by people who are also struggling with chronic dizziness and imbalance or who know someone with a vestibular or balance disorder. We were glad to have the opportunity to provide helpful information and connect others in our community with local balance support resources including inviting them to join Seattle Dizzy Group at an upcoming meeting). After walking together, we honored event participants with our first annual Dizzy Spirit Awards (for Wearing the Most Blue for Balance, Best Use of Walking Aids, Most Dizzy Group Spirit, and Perseverance, etc.). We have received very positive feedback from event participants and we are already looking forward to Balance Awareness Week 2016 and our Sixth Annual Walk for Balance Event!

Seattle Dizzy Group is so glad to have contributed to raising balance awareness over the years.  It is wonderful to see the progress that has been made in support of people living with chronic dizziness and imbalance! Please join us in continuing to create greater awareness for vestibular and balance disorders beyond Balance Awareness Week.   Together we can continue to make a difference!

Information to share with others:

Top Ten Facts About Vestibular Disorders

Raise Balance Awareness

Balance Awareness Facts, Figures & Trivia

To learn more about vestibular & balance disorders, visit: www.vestibular.org

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | August 31, 2015

Help Raise Awareness and Show Your Support

Save These Dates to Help Raise Awareness & Show Your Support in September!

September 14-20, 2015 is Balance Awareness Week!

The goal of the Vestibular Disorders Association (VEDA) for Balance Awareness Week is to “Defeat Dizziness” by reducing the time it takes to diagnose a vestibular disorder. This is a great opportunity to help raise awareness for vestibular and balance disorders and show your support for people living with chronic dizziness and imbalance. 

Helpful information to share with others:

Raise Balance Awareness

Balance Awareness Facts, Figures & Trivia

To learn more about vestibular and balance disorders, visit: www.vestibular.org

 

Celebrate Balance Awareness Week with Seattle Dizzy Group!

Join us for our  Fifth Annual Walk for Balance Event on Saturday, September 19, 2015 at Green Lake. Come support a good cause, meet great people, and “Walk a Mile in Dizzy Shoes” with us!

Event details:  www.seattledizzygroup.org/walk-for-balance

  

Wear Blue for Balance! Gear Up to Show Your Support:  https://seattledizzygroup.org/show-your-support

 

September 28-October 4, 2015 is Invisible Illness Awareness Week!

Nearly 1 in 2 people have a chronic condition in the U.S. and about 96% of those people are suffering silently with an “invisible” illness (that does not have obvious visible signs of illness).  Unfortunately, people living with an “invisible” chronic illness such as a vestibular or balance disorder are often misunderstood and stigmatized by society, including being negatively perceived as not sick, exaggerating, lazy, drunk, unintelligent, etc.  Get involved to help make a difference!

Chronic Illness Facts

10 Ways to Make Your Invisible Illness Visible

3 Challenges of Being An Illness Advocate 

More info:  www.invisibleillnessweek.com

Walk for Balance TM

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

 

Posted by: seattledizzygroup | July 31, 2015

Summer Survival Strategies

Enjoy Summer While Living with Chronic Illness

Summertime can be a challenging season for those living with a chronic illness. At a recent support group meeting, we discussed ways to beat the heat, manage summer social activities, and enjoy travel and other adventures with a chronic vestibular or balance disorder. Here are some strategies to make the most of the short summer months while living with a chronic illness:

Ways to Stay Cool with a Vestibular or Balance Disorder

By Julie Grove MPT of Cascade Dizziness & Balance PT

    • Heat and warmth can increase sensations of nausea.
    • When dizziness, vertigo, anxiety, or nausea/vomiting occur quickly apply cold towels to neck/head.
    • Move to a cool space, if safe, or feel the tactile (touch) receptors against a building wall.
    • Use cool/cold sensations to distract you (your brain) from the strong feelings of nausea.
    • Use natural anti-nausea foods: ginger and peppermint.
    • Reduce your body’s autonomic nervous system reactionary fight/flight to nausea/dizziness.

https://seattledizzygroup.org/2013/10/19/calm-cool-and-compensated

Articles with Helpful Summer Tips:

9 Summer Survival Tools When You Have a Chronic Illness

Top 10 Tips to “Beat the Heat”

Heat Safety Tips

How Much Do Summer Noises Impact Your Hearing

6 Easy Tips for Protecting Your Hearing this Summer

 Traveling with Dizziness (Adventures in “Dizzyland”)

Travel Tips

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | June 30, 2015

Impact of Chronic Illness upon Relationships and Social Activity

Ways to Maintain Healthy Relationships & Social Activity Despite the Challenges of Living with Chronic Illness

Chronic illness impacts every aspect of life, including relationships and social activity.  The unpredictability of symptoms and fatigue makes it especially difficult to stay social.  Friends, family, partners, caregivers, etc. must also adjust to a “new normal” as they walk alongside someone with a chronic illness.  At a recent support group meeting, we discussed ways to maintain healthy, supportive, and fulfilling relationships with loved ones despite the challenges of living with a chronic vestibular or balance disorder.

These articles offer valuable insight and helpful tips for the chronically ill as well as suggestions for loved ones and caregivers:

How to Cope When Chronic Pain (Illness) Affects Friends, Family & Social Life

7 Ways to Keep Your Relationship Strong Despite a Chronic Illness

Supporting Relationships Through Chronic Illness

3 Things the Chronically Ill Wish Their Loved Ones Knew

Free eBook: Chronic Illness & Friendship

Chronic Illness and Friendship Resources (Click to download PDF)

52 Ways to Encourage a Chronically Ill Friend (Click to download PDF)

How to Help a Sick Friend (Click to download PDF)

What Those with Chronic Pain or Illness DO Want to Hear

10 Things You Should Say to Someone with A Chronic Illness

15 Things Not to Say to Someone With A Chronic Illness or Invisible Illness

What Those with Chronic Pain or Illness DON’T Want to Hear

Part 2: What the Chronically Ill DON”T Want to Hear

How to Help Your Caregiver

A Not-To-Do List for Caregivers of the Chronically Ill

The Spoon Theory

 

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | May 31, 2015

Acupuncture and Acupressure Therapy

Acupuncture & Acupressure Therapy for Vestibular Disorders

by Steve Knobler, LAc

of North Seattle Community Acupuncture

(Presented to Seattle Dizzy Group on 5/9/15)

This presentation gives an overview of Acupuncture Therapy including how it works and how it can help as well as Acupressure techniques to try at home.  Learn about this complementary therapy for managing the symptoms of a chronic vestibular (inner ear) or balance disorder.

How Acupuncture Therapy Works

Acupuncture has been practiced for thousands of years.  It helps reduce stress, improve energy, and restore balance.  Acupuncture provides effective therapeutic relief for many health conditions including migraines, dizziness, depression and anxiety.

During a treatment, acupuncture needles are inserted into specific points on the body. The needles are hair-fine and solid, different than the hollow hypodermic needles used for injections. Usually, a person feels nothing at all or only a slight, mild ache or pinch. Most people find the experience very pleasant and relaxing, often falling asleep during treatment.

What Can Chinese Medicine Treat Concerning Vestibular Disorders?

Most Treatable Conditions

  • Fluid Imbalance/Insufficiency
  • Pathogenic Causes (Viruses & Infections)

*Acupuncture cannot effectively treat certain types of vestibular or balance disorders.  For example, Particle Repositioning Maneuvers are necessary for the treatment of Benign Paroxysmal Positional Vertigo.*

Symptoms

  • Nausea & Vomiting
  • Dizziness
  • Imbalance
  • Migraines
  • Depression & Anxiety
  • Stress

Chinese Medicine Associates Vestibular Disorders with Phlegm.

All of the above symptoms can occur if fluid moves poorly within the ear or anywhere else in the body.

  • A good analogy is making soup. It becomes too thick and phlegmy if you:
    • Don’t have enough stock
    • Overcook it
    • Use incorrect ingredients
  • The Goal: Correct the Cooking Problem
    • Clear the phlegm. Then…
    • Add more water
    • Reduce heat
    • Change ingredients (change diet)

What Tools Does Chinese Medicine Use to Help Vestibular Problems?

  • Acupuncture (pretty helpful)
  • Acupressure (moderately helpful)
  • Herbs (very helpful)
  • Massage (pretty helpful)
  • Lifestyle (can be very helpful)
    • Food
    • Exercise
    • Meditation

(Acupuncture information and images from http://www.northseaforme.com)

Acupressure Therapy

Acupressure is an ancient healing art developed in Asia over 5,000 years ago which uses the fingers to press key healing points that stimulate the body’s natural self-curative abilities. Using the power and sensitivity of the hand, acupressure therapy is effective in the relief of stress-related ailments, and is ideal for self-treatment and preventive health care for boosting the immune system. Acupressure releases tension, increases circulation, reduces pain, and detoxifies the body for more vibrant health.

Acupuncture and acupressure use the same pressure points and meridians.  For a pressure point reference, see the book “Acupressure Potent Points” by Micheal Reed Gach, PhD.

(Acupressure information and image from http://www.acupressure.com)

Acupressure Techniques

Guidelines:

  • Use moderate, circular pressure for 5 minutes.
  • Never be abrupt, forceful, or jarring.
  • Use abdominal points cautiously, especially with pregnancy or disease.
  • Don’t press heavily on lymph areas.
  • Do not massage burns, infections, ulcers, or new scars.

Acupressure Techniques Handout by Steve Knobler LAc (Click to Download PDF)

A Little Advice

Best Herbal Advice: Always consult an acupuncturist/herbalist before taking anything.

Best Dietary Advice: Minimize sugar, raw food, cold food, and dairy.

Best Exercise Advice: Move often and make it comfortable.

More Information:

7 Acupuncture Points That Can Save Your Life This Spring

Acupuncture Effective for Treating Hearing Loss

Acupuncture and Parkinson’s Disease (Click to Download PDF)

Steve Knobler, LAc

of North Seattle Community Acupuncture

Steve is a Licensed Acupuncturist who graduated from NIAOM in 1999. He is nationally board certified (NCCAOM) and has post-graduate training in orthopedic and sports acupuncture with Dr. Whitfield Reaves of Colorado. Steve enjoys treating everything, but his focus is treating people who are injured, pre/post surgical, with structural challenges or who desire improved physical performance.

http://www.northseaforme.com

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Presentation information is not meant to be taken as medical advice.

Presentations posted online may include discussion notes, links, images, and other information added by Seattle Dizzy Group.

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© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | April 30, 2015

How to Get Moving and Keep Moving with a Chronic Vestibular Disorder

 

Move for Your Health!

It can be difficult to get moving and incorporate exercise into your life when living with a chronic vestibular or balance disorder.  At a recent support group meeting, we discussed strategies for overcoming challenges and gradually increasing mobility and activity level without overdoing it.

Here are a few articles that offer helpful tips for improving your health and quality of life though movement and exercise:

Don’t Just Sit There! Move for Your Health – http://newsinhealth.nih.gov/issue/Dec2012/Feature1

Tips for Getting Moving Again While Dealing with Migraine – http://migraine.com/blog/exercise-tips-to-move/

Managing Activities and Exercise (with Chronic Fatigue) – http://www.cdc.gov/cfs/management/managing-activities.html

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | March 31, 2015

Massage Therapy

Massage Therapy

by Francesca Garibaldi, LMP, RMT

of Francesca Garibaldi, LMP & Associates

(Presented to Seattle Dizzy Group on 3/14/15)

This presentation gives an overview of Massage Therapy, including how it works, types and benefits of massage, what to expect of a treatment, and self-massage techniques to try at home.  Learn about this complementary therapy for managing the symptoms of a chronic vestibular or balance disorder.

How Massage Therapy Works

Massage therapy is one of the oldest and most effective healing modalities we have available to us. It helps your body rid itself of the toxins you encounter in foods and the environment.

Daily activities, stress, poor posture, etc. can cause our muscle fibers to get stuck together (knotted) which blocks the blood flow and causes toxins to build up.  As we try to compensate for decreased mobility from tight muscles, we only end up causing problems with additional muscles.  Massage therapy works by breaking up knots in the muscles and realigning the muscle fibers which increases mobility, opens up the blood flow again, and releases built up toxins which can then be flushed out of the body.  After receiving a massage, you should always drink plenty of water in order to help your body clear toxins.

Regular massage therapy (received at least once or twice a month) can help improve your health and quality of life by reducing stress, relieving muscle tension, improving mobility, and unburdening your body of harmful toxins.

Types and Benefits of Massage

Swedish Massage

Swedish massage is a very relaxing and therapeutic style of bodywork. It combines oils or lotion with an array of strokes such as rolling, kneading, and percussion to help the body improve its circulation. The benefits of this type of massage are wide-ranging and include relief from aches and pains, decreased stress levels in the body, enhanced mental clarity, improved appearance, and greater flexibility.

Deep Tissue Massage

Deep tissue massage is a form of bodywork that aims to relieve tension in the deeper layers of tissue in the body. Deep tissue massage is a highly effective method for releasing chronic stress areas due to misalignment, repetitive motions, and past lingering injuries. Due to the nature of the deep tissue massage, open communication during the session is crucial to make sure you don’t get too uncomfortable. Keep in mind that soreness is fairly common after the treatment and that you should drink plenty of water to aid with the flushing and removal of toxins that are released from the deep tissue during the session.

Reiki

Reiki is a Japanese form of energy work that cleanses and balances the energy system in the body. As a result, the body’s natural self-healing mechanisms strengthen, helping to establish optimum health. During a session, the practitioner works directly with your energy field to remove blockages, detoxify your system, and restore your vital life force energy. Reiki utilizes a gentle laying on of hands to conduct the necessary energy force between us. The benefits of Reiki range from the release of habitual mental/emotional stress to alleviating chronic pain. Reiki can be done in a separate treatment or included with other massage sessions.

Intra-Oral Massage Therapy

If you have been diagnosed with TMJD (Temporomandibular Joint Dysfunction) or have pain in the jaw, by the ears, forehead, back of the head, neck and/or shoulders, a therapeutic TMJ massage may be right for you.  Treatment consists of massage to the neck, shoulder, facial, and muscles of the mouth. The practitioner will focus treatment on your chewing muscles, eliminating any trigger points, and pain referral areas by releasing tension in the fascia around the jaw, neck, head and face.

This treatment also includes intra-oral massage to the masseter muscles to reduce the stress it can put on the jaw and temporomandibular joints. Pain is frequently aggravated by clenching and/or grinding of the teeth, causing damage to the joints due to disease, arthritis or trauma to the face.

CranioSacral Therapy (CST)

CranioSacral Therapy is a gentle yet powerful technique that is effective in releasing neck pain, back pain, and mental stress (among other things). It does this by optimizing the movement of cerebrospinal fluid through the spine and around the skull. Developed by physician William Sutherland, this therapy provides a very soothing and relaxing healing experience.

(Information from http://www.francescamassage.com/types-of-massage)

What to Expect of a Massage Treatment

Before the treatment begins, discuss with the practitioner your problem areas and goals of the massage as well as any preferences or requests.

Usually, massage is received while lying on a table covered with a sheet or blanket in a room with a relaxing atmosphere.  The massage practitioner will do their best to accommodate your needs, including propping you up if necessary (to avoid positional dizziness or vertigo).  You may undress or remain clothed according to your personal comfort level.

During the massage, breathe deeply and try to relax and enjoy the treatment.  The goal is for you to be as comfortable as possible, so the practitioner should check in with you about intensity and there should be no pain. Communicate any discomfort at once, should you experience it, so that the practitioner may adjust the pressure or location of their hands. If you are asked to change position during the treatment, move slowly especially when turning over to decrease dizziness.

After the massage, you should feel very relaxed.  To minimize disorientation or dizziness, sit up from the massage slowly and take your time getting up from the massage table.  You may also wish to sit in the waiting area for a short while before going on to your next activity.  Be sure that you are fully alert before driving.

Following your massage treatment, you may experience mild nausea, headache, or tender lymph nodes in your neck or underarms for a few hours up to a few days  (especially after deep tissue massage).  Be sure to drink plenty of water in order to flush out the toxins that were released during the treatment and help alleviate any post-massage symptoms.  Exercise is also a great way to clear toxins (by sweating) and help maintain improved muscle mobility longer.

As you continue with regular massage therapy with the right practitioner (one whose touch and technique are a good fit), you will find what works best for you and gives you optimal results.

Self-Massage Techniques

Self Massage Techniques Handout (Click to Download PDF)

Wall Stretch (for Thoracic Outlet)

Position 1                         Position 2                        Position 3

Tennis Ball Massage

 Lying down flat or up against a wall, use tennis ball(s) to alleviate muscle knots and tension.  Use two tennis balls in a sock for neck muscles.  Or, use one tennis ball for shoulder area.

Francesca Garibaldi, LMP, RMT

of Francesca Garibaldi, LMP & Associates

Francesca graduated from Ashmead School of Massage and became licensed as a massage therapist in 2006.  In her eight years, she has focused on deep tissue and injury treatment in both her practice and continuing education.  TMJ and jaw related pain is quite prevalent with other injuries, so in 2012 she was certified by the State of Washington to administer intraoral massage and she has been amazed at the difference it has made in relieving headaches and neck pain.

Life is all about balance and Francesca believes that is true with her practice as well.  Deep treatment work can be great for the muscles, but she believes energy work can be just as important.  Her journey into bodywork began in 2000 when she became Level 1 certified in Reiki while training as a yoga instructor.  She was shocked at the difference she felt with treatments and she continues to be surprised by the positive feedback from clients.

http://www.francescamassage.com

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Presentation information is not meant to be taken as medical advice.

Presentations posted online may include discussion notes, links, images, and other information added by Seattle Dizzy Group.

*******

© Copyright 2015, Seattle Dizzy Group. All rights reserved.

Posted by: seattledizzygroup | February 28, 2015

Living with a Rare Disease

Rare Disease Day 2015

Today, February 28th, is Rare Disease Day!

An estimated 350 million people worldwide or about 1 in 10 people in the US are living with a rare disease.

So, even if you don’t have a rare disease, you probably know someone who does.

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

The 2015 theme is: “Living with a Rare Disease: Day-by-Day, Hand-in-Hand”

Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers who are living with a rare disease.

The complex nature of rare diseases, coupled with limited access to treatment and services, means that family members are often the primary source of solidarity, support and care for their loved ones. The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the millions of parents, siblings, grandparents, spouses, aunts, uncles, cousins, and friends whose daily lives are impacted and who are living day-by-day, hand-in-hand with rare disease patients.

For more information, see:

http://www.rarediseaseday.org/article/theme-of-the-year-living-with-a-rare-disease

About Rare Disease Day

Rare Disease Day began in 2008 and is celebrated internationally on the last day of February every year with the objective of raising awareness about rare diseases and their impact on patient’s lives.

Learn more about US Rare Disease Day: http://www.rarediseaseday.us/about

Get Involved!

The purpose of Rare Disease Day is to harness the creative energy of the millions of people around the world with rare diseases — and the millions who care about and assist them— to raise awareness and generate action. You can help achieve this goal throughout the year.

Find out how you can get involved: http://www.rarediseaseday.us/take-action-now

National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

http://www.rarediseases.org

Posted by: seattledizzygroup | January 31, 2015

Moving Forward in 2015

“Life is like riding a bicycle. To keep your balance, you must keep moving.” – Albert Einstein

We had an another great year in 2014!  With your help, we can keep moving forward in 2015!

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 2014 Highlights below). We are excited for the year ahead and hope you will join us in 2015 and help us continue to grow, provide much-needed community, and offer free support for people living with chronic dizziness and imbalance, in Seattle and beyond.  With your help, we can continue to expand community outreach and involvement and increase our advocacy efforts to raise awareness about vestibular and balance disorders (including participating in Balance Awareness Week with our Fifth Annual Walk for Balance Event).

Get Involved!

Seattle Dizzy Group is organized entirely by volunteers (the majority who are personally impacted by chronic dizziness and imbalance). We need your help to keep moving forward in 2015! We invite you to 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, not-for-profit group funded through donations. As we continue to grow, we are naturally incurring more expenses. Please consider supporting Seattle Dizzy Group with a financial gift to help us keep growing in 2015!  (Any amount is greatly appreciated!).

Ways your financial gift helps Seattle Dizzy Group:

  • Providing materials, supplies, and hosting for monthly support group meetings.  (Each meeting costs about $25, or about $300 annually).
  • Providing thank you gifts for guest speakers. (As funds allow, we strive to honor speakers with about $25 value gift, or about $100 annually).
  • Providing administrative support, online services/resources, and website hosting, etc.  (Administrative costs are about $300 annually).
  • Providing 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).

THANK YOU for your support!

2014 Highlights

  • In 2014, we had guest speakers on the topics of Food & Mood, Naturopathic Medicine & Meditation, Feldenkrais & Easier Movement, Treating and Managing Vestibular and Balance Disorders, and CranioSacral Therapy.
  • In September, we hosted our Fourth Annual Balance Awareness Event/Walk for Balance in celebration of Balance Awareness Week and Falls Prevention Day with a goal of raising awareness for vestibular and balance disorders and showing our support for people living with chronic dizziness and imbalance. Our 1-mile walk theme was “Walk a Mile in Dizzy Shoes.” In addition to the walk, we also had balance awareness information and interactive activities for all ages. The event was a big success with a great turnout and increased community involvement, including exhibitors/sponsors: Move Beyond Limits, MOSAIC Physical Therapy and Massage, and Cascade Dizziness & Balance PT. It was a fun day that hopefully helped build momentum for the cause. We received wonderfully positive feedback from participants, and we are excited to continue to grow and improve the event in 2015. (Save the date and plan to join us Saturday, September 19th, 2015!).
  • In October, we celebrated 8 years together as a support group!
  • The Seattle Dizzy Group website and online services continued to be expanded and reached a greater number of people in 2014. In addition to having a website blog and Facebook page and group, we are also on Twitter, and we have a MeetUp Group (where members can connect, receive group updates, and RSVP for upcoming meetings and activities).

See also:  2013 Highlights

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

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