Tag Archive | BADD

To Family/Friends of Those with Balance and Dizziness (vestibular) Disorders

Muriel from BlogSince Dr. Graham Bryce and I started the B C Balance & Dizziness Disorders Society (BADD) 15 years ago, I’ve talked with hundreds and hundreds of members dealing with vestibular disorders. When our first Board met around my kitchen table, we discussed a name for our fledgling support group. I noted that “Balance and Dizziness Disorders” which was chosen, would probably have the acronym BADD, which might not look good. The response? “Well, it IS bad.” So “BADD” we became.

Balance and Dizziness Disorders ARE bad

Balance and Dizziness Disorders ARE bad

Through the years, members complain that nobody gets it. Not only do family and friends not understand how debilitating these conditions are, too many medical practitioners have no idea how difficult it is, at times, to function at all. These disorders are unpleasant enough to live with, but the lack of empathy from those around us can be devastating. With a broken arm, you sport a cast; if you are blind, you use a white cane; but stagger in the street (As I have from time to time) and people will look askance, consider you to be drunk and refuse to help you even if you request it. And, yes, that has happened to me!

Image used on BADD's brochure. We are always aware of trying to stay upright

Image used on BADD’s brochure. We are always aware of trying to stay upright

Not only do we deal with a scary, unstable world which moves in ways others don’t experience, with a balance system others take for granted which won’t work properly for us, but also the anxiety and fear of knowing that at any moment, often without warning, everything may begin to spin. When that happens, panic ensues, we find it impossible to keep our bodies upright. The feeling is terrifying.

I have desperately clung to street poles, mailboxes, garbage cans and strangers when suddenly hit by one of these episodes. I have courageously fought my way out of my apartment in stages after sieges. I’ve had to stop my car enroute to work in busy Los Angeles traffic, my heart pounding while my whole body trembled with fear. Not pleasant……

At any time, things can begin to spin

At any time, things can begin to spin

I have arthritis. It hurts. Unfortunately, after so many falls, a knee replacement didn’t work miracles. I deal with pain every day. I have, however, repeatedly said I can cope with the pain — as long as I’m not dizzy. Any day in which I don’t experience dizziness is a terrific day!

A father of a member I spoke with insisted his son was not being diligent. He missed a business appointment when he was experiencing an episode. (The son’s attacks were so violent, he was unable to get up from the floor and would have to be taken to hospital by ambulance.)

Keep Going? I can't even get up!

Keep Going? I can’t even get up!

“I’ve had a heart attack. I’ve had cancer,” the father insisted, “You just keep going.”

When I tried to explain that I, myself, ordinarily very reliable, self-sufficient and hard-working, was unable to “just keep going” even though I was not financially ready to retire. He didn’t hear or understand.

“He had a friend fill in for him,” the dad continued, “Maybe his client will like his friend better and he’ll lose the client. You just have to……”

I failed to reach him. What can I say when members tell me their family or even their doctors don’t take their conditions seriously. Too many family doctors seem to know nothing about vestibular disorders. At times I despair.

Yes, we make dates and appointments we sometimes can’t keep. I was to be interviewed on television for my job when I became so dizzy on my way to work, I had to call in to say I had no choice but to take a cab home. They were not pleased. I was the only one working there comfortable with that kind of assignment. The cab driver, seeing how ill I was (did he think I was already drunk at 8 a.m.?) didn’t offer me any change. He took much more money from me than he should have. I was too sick to argue — but I still resent it.

I often feel like this, but I'm sure he's better at it than I am

I often feel like this, but I’m sure he’s better at it than I am

One of the most common causes of dizziness is Benign Paroxysmal Positional Vertigo (BPPV), often easily treated by a manoeuvre. Many of us with other vestibular disorders end up with BPPV as well. Sometimes a manoeuvre will work. Sometimes it won’t. Sometimes it makes you feel even worse. There are no easy, simple answers.

I plead with family and friends of people who experience balance and dizziness disorders to try to understand and forgive when we’ve made promises we can’t keep or a date we have to cancel.

I've gotta get out of here! Too many colours! Too many lights!

I’ve gotta get out of here! Too many colours! Too many lights!

We may feel a desperate need to immediately escape from a shopping centre because the bright colors are making things impossible. We’ll suddenly grab your arm to hang on to because the world has decided to play nasty tricks on us. We’ll ask you to walk farther to avoid walking on the grass because if there is a slight indentation hidden by it we may fall. It may seem unreasonable to you, but I am familiar with it all.

Yes, we do love you. Yes, we do want to see you. And, yes, please do not misread our distress — it has nothing to do with you and it is not a rejection of you. We need you in our lives even more than other people do.

For information about BADD, see http://www.balanceanddizziness.org

 

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Bragging Rights

Muriel from BlogI’ve been having a grand time reading books downloaded onto my e-reader from the Gutenberg Project website. As a history buff, I’m thoroughly enjoying “The Autobiography of Benjamin Franklin” written in 1791. Franklin wrote with obvious pleasure about his many accomplishments, and who can blame him. 

“I shall a good deal gratify my own vanity,” said Franklin. “Indeed, I scarce ever heard or

Franklin was unabashedly proud of his accomplishments

Franklin was unabashedly proud of his accomplishments

saw the introductory words, “Without vanity I may say…” but some vain thing immediately follows.”

It made me think about some of the good stuff most of us accomplish in our own lives and, although nothing I’ve ever done compares with Franklin, perhaps it is okay to share some, especially since one was so recent, I am still basking in the pleasure of it.

This was a tax issue complicated by my having lived for years in the U.S. before returning to Canada, which resulted in some double taxation. After about a year of letters, phone calls and emails, I received an email just this week, which reads partly: “Muriel:  Good News.  It appears that our contact, —– has been able to negotiate an exemption for you as well as other clients in your situation with the CRA…..  He complimented you on your very thorough investigation noting that it was extremely helpful in amending the current policy, not only for you, but in general for all clients in the same circumstance.  Kudos to you!!!   ….

I know I'm right, blah, blah, blah....

I know I’m right, blah, blah, blah….

.”Since I’m neither an accountant nor a tax expert, you can imagine how pleased I am, especially knowing that I have, at the same time, helped others.

I’m also pleased with the fabulous little Book Club I started around 1997/98, which continues to enrich my own life so much. I’ve certainly gotten more out of it than anyone else possibly could.

We read, we discuss the books, and enjoy each other

We read, we discuss the books, and enjoy each other

Through the years, this little group of knowledgeable, well-read women has introduced me to authors and books I would never have read on my own. And besides we have a good time at it.

But here’s the biggie. I am extremely proud of having founded the BC Balance & Dizziness Disorders Society (BADD) in 1999, with the encouragement and support of my then wonderful otolaryngologist, Dr. Graham Bryce. BADD is dedicated to supporting people with balance, dizziness and all related vestibular issues, and we’ve managed to help hundreds of people who suffer with these debilitating conditions.

Tai Chi is now recognized in the medical literature as being helpful for the vestibular system

Tai Chi is now recognized in the medical literature as being helpful for the vestibular system

Soon afterwards, I saw Teruko Ueda performing Tai Chi and thought perhaps that would be a good thing for us dizzy folk to try. The “Tai Chi for Balance” class was started in 2000 and is thriving under Teruko’s gentle leadership. Now Tai Chi is recognized in medical literature as being helpful for people like us.

The “Vestibular Rehab exercise classes” we started continue to run and help people cope. BADD also created a DVD of these for people to use in their own homes if they don’t have access to a class in their own community. Hurrah for all of us. You can find BADD’s website at: http://www.balanceanddizziness.org

BADD created a DVD of Vestibular Rehab Exercises people can purchase and do in their own homes.

BADD created a DVD of Vestibular Rehab Exercises people can purchase and do in their own homes

So, you will understand why I so enjoyed the following article about BADD written by Canada’s well-known humourist Arthur Black. He is the only one I know who can write with humour about his experience with Benign Positional Paroxysmal Vertigo (BPPV) and, fortunately for him, finding the proper treatment for same.

Arthur Black, beloved Canadian humourist

Arthur Black, beloved Canadian humourist

(By the way, Arthur Black, a 3-time winner of the Stephen Leacock Memorial Medal for Humour and former host of CBC Radio’s “Basic Black”, etc., etc., has a new book out, “Fifty Shades of Black”. Just hearing the title made me laugh.)

Arthur Black's latest book, "Fifty Shades of Black", guaranteed to make you laugh.

Arthur Black’s latest book, “Fifty Shades of Black”, guaranteed to make you laugh.

Of Vertigo, Vanity and Volunteers

Reprinted with permission of the author, award-winning Canadian humourist Arthur Black

A couple of years ago, I suffered – briefly – from a condition called Benign Paroxysmal Position Vertigo – BPPV for short.

Dizzy spells, to put it even shorter.  If I got up too fast or turned my head too sharply or bent over quickly to pick something off the floor, my internal gyroscope went into overdrive and I lurched about like Ozzie Osbourne on New Year’s Eve.

You don’t get BPPV from bad dietary practices, using street drugs or hanging out at the Willie Pickton pig farm.  BPPV is an equal opportunity bushwhacker that nails vicars and villains alike.  Anyone can get it, at any age, at any time.  An attack comes when microscopic grains of calcium crystals floating about in your inner ear brush against tiny hairs therein.

This sends signals to your brain that you are falling down, or veering left or right.  Your brain attempts to get your body to compensate in 11 different directions all at once and, hey presto, you feel like you are going through the spin cycle in some galactic Maytag.

Happily, there is a procedure called the Epley Maneuver.  It’s a relatively simple manipulation of the head that any qualified ear, nose and throat specialist is trained to perform.  Basically, Doctor ENT takes your noggin and gives it a vigorous spin.  The idea is to shake up those calcium crystals in your ear and get them to settle down where they’re supposed to be, well away from the hairs.

Does it work?  An astonishing 85% of the time – providing you actually are suffering from BPPV.  If your vertigo is caused by something else (and there are several possibilities) then the Epley Maneuver won’t help.  My vertigo was cured in one visit and I wrote a magazine article about it.  End of story.  Not.

I get an email from one Muriel Kauffmann.  She is a spokeswoman for a group called BADD which stands for Balance and Dizziness Disorders Society.  As a former sufferer, she wants to know, would I consider coming to town and speaking to her group?  Well, sure.  Public speaking is what I do for a living.  I email her back with details of my speaking fee, my expenses expectations and my availability.

I get another email.  You don’t understand, writes Muriel.  We are a non-profit organization.  We don’t even have an executive.  Would I come and speak for free?

Hell, no.  I’m a professional.  I don’t give away my services.  Would you ask a surgeon to do a free appendectomy?  A lawyer to defend you in court, gratis?

You don’t understand, Muriel emails back.  She makes many passionate arguments, but what it boils down to is, what I don’t understand is that she is Muriel Kauffmann and she will not be denied.

When I arrive to deliver my (free) speech at St. Paul’s Church in Vancouver, the auditorium is not only sold out, there are people sitting in the aisles and a conga line of latecomers trailing out the door.

This is entirely Muriel Kauffmann’s doing.  She had dredged up every soul who ever suffered from vertigo in the entire British Columbia Lower Mainland and they are all here tonight.

And as almost happens when I abandon my narrow preconceptions and go with the flow, I learn amazing things and hear incredible tales.  I hear one sufferer tell how her doctor pooh-poohed the Epley Maneuver.  “It’s a hoax,” he assured her.  I hear of another vertigo victim who spent 10 years – ten years – as a prisoner inside her own house, terrified to face the world for fear she would fall on her face.

After a decade of self-exile, she went into the office of an ENT specialist in a wheelchair.  And walked out on her own two feet.

I hear stories infinitely more interesting – and harrowing – than my frail tale, but incredibly, my vertigo story – thanks entirely to Muriel Kauffmann – continues to snowball across the nation.

So far, I have been interviewed by two Vancouver newspapers, CKNW radio, the Edmonton Journal and the Calgary Sun. I have yet to return calls to the Toronto Star, the Montreal Gazette and CBC radio’s national radio show, The Current.  I’ve got emails, cards and letters from BPPV sufferers from Joe Batt’s Arm to Buffalo to Baffin Bay.  I’ve written books that didn’t get one-tenth this attention.

Point of the story?  A metaphorical bouquet of roses to the Muriel Kauffmanns of the world who Get Things Done and Don’t Take No For an Answer.  Muriel’s a volunteer and like all volunteers she gives her time and her energy and her cunning, all for free.  Volunteers – bless ‘em – are the backbone and lifeblood of our communities.

Moral number two: count your blessings. If you got out of bed this morning and didn’t fall flat on your keister or do a 180-degree face plant into the wall, consider yourself lucky.

Award yourself an extra scoop of corn flakes.”

I am particularly proud of  mu children who love me despite my failings.                despite

I am particularly proud of my children who love me despite my failings.

Benjamin Franklin was certainly able to say he accomplished much in his lifetime. I’ve managed a few of my own that please me. I think being a parent and raising my children to be good, honest, decent, human beings is another accomplishment I am extremely proud of.  And, I am proud of them in particular, especially for their loving patience with me in all ways — especially regarding technology.

What about you? How about sharing some of your accomplishments here?