Tag Archive | Balance

Doctor-assisted suicide for Canada

Muriel black and white Kudos to Canada’s Supreme Court, which this week voted unanimously for doctor-assisted suicide. It seems they’ve given a reluctant Conservative government a year to put it in place. This is something I have wanted for myself for years and I heartily approve. Hurrah for Canada, the country that made Gay marriage legal, and now has passed another important act of compassion.

Normal people don’t move mountains, and Dr. Jack Kevorkian, crazy as he may have been, was a hero in my eyes. He assisted 120 people to die. To my friend who is writing about serial killers, that is what he considers Kevorkian was — a killer. Interesting….

Dr. Jack Kevorkian and his suicide machine

Dr. Jack Kevorkian and his suicide machine

People have strong feelings on this issue, and I will not argue. I just know how I feel, and lately, it has been front and center in my own life because a friend asked me to help him end his suffering. (And, this was not the first time I have been approached in this way — I don’t know why.)

“C” was a member of the organization I started 15 years ago for people with balance and dizziness disorders. When I first met him, I was sure the guy would kill himself at work, which sometimes required climbing ladders. He had Ataxia, which compromised his nervous system and his balance was severely affected even then. Fate sometimes plays cruel jokes on us, he had been a Tango dancing devotee.

His co-workers thought he drank. He let them think so. They would chuckle, and he would smile with them. But it was a charade — he didn’t drink — though if you saw him walking, you would certainly think so. He was determined to keep working until he was 65 so he could collect his pension. I was sure he wouldn’t make it….

No one fought harder than “C” to continue functioning, he attended Tai Chi classes, and regularly worked out at a gym. His arm muscles looked strong and powerful, but his illness was even more powerful. However, every step I thought he should take, he delayed. He drove longer than I thought he should. He walked without a cane longer than I thought he should — and he fell, again and again. When I felt he needed a walker, he finally gave in and bought a cane — and kept falling. When I thought he needed a wheelchair, he purchased a walker.

They must have known him well at the emergency department of his local hospital. Once, it was nine stitches to his scalp, another time it was twelve. Too often he sported ugly scrapes and bruises. I worried. He drove me nuts. It became too dangerous for him to live on his own. Long after I thought he should give up his apartment, he finally gave in. The falls, however, never stopped.

When things became more than he could bear, he asked me to help him end his life. I contacted “The Farewell Foundation”, an organization which helps people in his position as much as they are legally permitted to. They cannot provide anything for you, but they will stay with you when YOU, yourself, obtain or do whatever you decide on, until you are dead. I understood their position.

Sociologist Russel Ogden, founder of The Farewell Foundation

Sociologist Russel Ogden, founder of The Farewell Foundation

Things became more and more unbearable. He could no longer write. He could no longer speak clearly. He could no longer hear much. I met with him and the kind people from the organization. They warned me to be careful and told me of possible dire consequences. A woman who had helped someone spent over $100,000 in court, lost her passport and could no longer leave the country. My children live out of the country. I love them. I want to be able to visit them. I was scared.

We visited his doctor together. He was sympathetic, but not willing to help — too frightened to I assume. Again, we understood. I bought the most recent copy of “Final Exit”. I read it cover to cover. I marked and underlined everything I felt could be helpful, brought it to “C” and read those parts for him. We talked about the various options. However, as usual, everything he decided to do, he decided on too late.

The last fall I was aware of cost him an eye. They had to remove it. After that, he was permanently hospitalized. Things were now truly out of his hands. He again begged me to help. I was told if he chose not to eat in hospital, they wouldn’t be allowed to force him, and they are required to keep him comfortable. Did he understand? Was the information I was given correct? I’ll never know.

He then asked me to take him to Switzerland. He could no longer walk at all. I would not be physically capable of helping him make it. It was too late. In desperation, he asked me to get him a gun. He was no longer able to hold one or to shoot it. It broke my heart to watch his suffering. Can a caring person be relieved and glad when a friend dies? I was….

For “C” and the other person I knew who would have opted to end his life on his own terms had he been able to, I hope this new law will be enacted and be there for all who wish it. You need not agree…..

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Oh dear! A Concussion?

Mom Scared SM I have a vestibular disorder. I have dealt with balance and dizziness issues for years. I have fallen many times. I listen to the news — I am interested in what happens when athletes suffer concussions. I know about these things. There are members of the organization I co-founded 15 years ago who deal with vestibular conditions because they’ve had concussions. You would think I’d know better….
I fell again recently. I went down like timber in the middle of the night and hit my forehead against a dresser with metal drawer pulls. Ouch! I was visiting friends. I didn’t want to disturb them so I said nothing — and did all the wrong things!

I fell down like timber in the middle of the night

I fell down like timber in the middle of the night


I dragged my aching body back into bed. The next morning, by pulling my hair down over it, I hid the large bump on my forehead which had blossomed into lovely shades of purple and blue. Clothing hid the bruises on my body and I claimed exhaustion and blamed the heat wave (it was 110 F. there) as an excuse to lay low. These are especially good friends and they let me call the shots. They spoil me and take care of all my needs/desires and I felt okay for the rest of my visit with them and noticed nothing.
After arriving back home, I felt unusually exhausted and unable to function. I’m organized — I made a list. It overwhelmed me — I’m not ordinarily easily overwhelmed. Friends called, but I was too weary to call them back (which was weird — I’m talkative) and sent out an email to a few at once saying I would call after I rested for a few days. A friend called back to ask if I had forgotten our book club meeting (at my place) the very next day. I had seen it on my calendar — it just hadn’t registered.
I had a concussion

I had a concussion

This friend knows about concussions. She recently had one herself. She suggested I see my doctor and I listened. My doctor confirmed that I did, indeed have a concussion and told me which steps to take, and especially to take it seriously.
“Muriel, I am interested in prevention,” she told me. “I want you to carefully think about it. Tell me exactly how it happened, why it happened, and what you can do to avoid it in the future.”
The brain, before and after a concussion

The brain, before and after a concussion


We discussed it together and I subsequently thought about it further after I got home and this is what I came up with.
#1 I was over-tired. I had risen at 4 a.m. the day before, then taken an all-day train from San Francisco to Los Angeles, arriving at about 9:00 p.m. Excited to see each other, my friends and I chatted awhile before I turned in. I awoke, as usual, sometime during the night to go to the bathroom, but was too tired to get up. If I ignore it, I hoped, perhaps I would fall back to sleep. It worked, but when I awoke the next time, it was a more urgent call for action. I moved too quickly.
#2 The bed I slept in is a sofa-bed. I’ve slept in it many times and it is lower than my own. Usually, I support myself with my hands when I get out of bed at home. I could not do that on the sofa bed. I needed to raise myself slowly and be sure of my footing before getting up. I was in a real hurry. I didn’t.
#3 The carpeting is plush and thick and soft — my own at home is not. I should have taken more time in turning towards where I was heading. I didn’t.
#4 In any case, I could have used my walking stick for support, no matter what. I didn’t. I jumped up, turned and keeled over.
“After the horse ran away, I locked the barn.” From that night on:
I did not put off the middle of the night trip to the washroom, so it would not feel so urgent.
I took my walking stick up to my bedroom each night and diligently used it for stability each time I got out of the low sofa bed and walked to the nearby washroom.
I turned slowly — as I should have in the first place.
It was too late to prevent the concussion this time, but I shall remember these steps in the future. And, I was extremely lucky. I’m okay now.

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