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"On this page you will find information for, and about, Caregivers for ALS ( CALS). Several have recorded their experience in the ALS journey and have agreed to share them here. We appreciate the courage of these often forgotten partners and friends of PALS in sharing their thoughts with us. Reproduction of any or all of these articles without the consent of the individual author is prohibited.  Linking to these pages is also prohibited without the express permission of the webmaster and the person who wrote the story"

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"It doesn't hurt to be optimistic. You can always cry later." Lucimar Santos de Lima

Ellen's Story

I'm a CALS.  I'm not physically caring for my husband, Chad, any longer.  His battle with A.L.S. ended on May 11th.

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"Life is not always what one wants it to be, but to make the best of it as it is, is the only way of being happy." Jennie Jerome Churchill

Carole Brody Fleet’s Story

Today, you’re healthy. Tomorrow, who knows? How would your relationship change if your spouse became seriously ill?

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"I do not want to die . . . until I have faithfully made the most of my talent and cultivated the seed that was placed in me until the last small twig has grown." Kathe Kollwitz

TRIBUTE TO JIM

How shouldn’t I have loved you my loved one, since what you had was not your choice (A.L.S.).

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"There is only one real failure in life that is possible, and that is, not to be true to the best one knows."       John Farrar

NANCY'S STORY 

My name is Nancy. I live in the state of West Virginia in the U.S.A.

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"The first duty of love is to listen." Paul Tillich

JOAN'S STORY 

Merv had been having some trouble with his hands for a long time but then it started to get worse.

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"Friendship is the only cement that will ever hold the world together." Woodrow Wilson

VONDA'S STORY

I was a nursing student and Jessie was a truck driver. We have 3 kids, Calvin Jessica and  Jessie 3.. Jessie was DX in September of 99 with ALS.

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"When things come to the worse, they generally mend." Susanna Moodie

SHIRLEY KIRK'S STORY:

My mom, Shirley, was a tough old bird. She knew we called her that and would laugh about it.

She was born in St. John’s, Newfoundland in April of 1934, so she was a “Newfoundlander” in every sense of the word.

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"Great things are not something accidental, but must certainly be willed."   Vincent van Gogh

MILDRED'S STORY:

We live in Reynoldsburg, Ohio, which is a suburb of Columbus.  My husband, Charles, was diagnosed with ALS in September of 1999.

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"Pick battles big enough to matter, small enough to win." Jonathan Kozel

CLYDE & RUTH HARRIS'S STORY:

Janine Harris was a young Newfoundland girl, who, at the age of 17 years, with thoughts of a full life ahead of her, devoted parents and friends, a love of life, music, laughter, art, and a dream of becoming a nurse, had her dreams destroyed, and her life robbed by Lou Gehrig’s Disease.

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"There is no dignity quite so impressive and no independence quite so important as living within your means." Calvin Coolidge

CHERYL SHERRIFF'S STORY:

A STORY OF MY DAUGHTER'S ILLNESS with ALS, AT AGE OF 19

My daughter, Tanya, was diagnosed in Feb 2002 with ALS (Amyotrophic Lateral Sclerosis) at the age of 18 years.

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"Pride is at the bottom of all great mistakes." Jim Ruskin

Gone from Sight

( Editors note: The following is an essay written by Marie Salamoun-Dunne, President and Patient Services of Prince Edward Island and her friendship with Marjorie, a Person with ALS.)

 

    Marjorie wanted the world to know about the silencing disease that impinged upon her life. 

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"There's harmony and inner peace to be found in following a moral compass that points in the same direction regardless of fashion or trend." Ted Koppel

MEG BRASSER'S STORY:

How Bill, Meg and their daughters met the challenges of motor neurone disease

    Bill's first symptoms that I knew about were after open heart surgery to replace his aortic valve with a human valve because it had scar tissue blocking it and he had been born with an aortic valve with only two cusps instead of the intended three.

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"Education is the ability to listen to almost anything without losing your temper or your self confidence." Robert Frost

So this is my story.  Correction.  Krys' and Brett’s story.

      Brett and I met in 1990 during a federal leadership campaign. That was the first thing we had in common. Politics. My interest was strictly as a volunteer but Brett’s involvement was more of a possible career enhancement.

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"Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are." Bernice Johnson Reagon

Brenda Carter's Story:

    I'm 54 years old and lost my sweetheart of 40 years to limb onset ALS in March 2001, he was 54 then. Yes, we met when we were 14!

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"Ethics is about how we meet the challenge of doing the right thing when that will cost more than we want to pay." The Josephson Institute of Ethics

Mary Edmond's Story:

     Dick and I have been living with ALS for the last two years. Four years ago, Dick had a quad bypass and was recovering fairly nicely, but had a lot of weakness in his legs.

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"To be on alert is to live; to be lulled into security is to die." Oscar Wilde

Shirley Goodwin's Story:

I came into ALS with my eyes wide open.

    I lived in Florida at the time and been alone for over six years. My daughter had a computer and she encouraged me to join a pen pals club. So I did. The first person I met was a man from Canada.

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"What we call reality is an agreement that people have arrived at to make life more livable."  Louise Nevelson

Karin Michelussi's Story:

    I think it's a great idea for everyone to share their stories of ALS and how it has impacted their lives. My name is Karin Michelussi and I'm 31 years old. Our mother has ALS and will be 60 years old next month. We're all still trying to come to terms with everything that has gone on.

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"One of the biggest factors in success is the courage to undertake something." James A. Worsham

Mary Valliere's Story:

    I was living alone after losing my Dad to heart disease in 1988, my husband to cancer in 1989 and my mother to cancer in 1992. My sister, her husband, and I then decided to build a house together. They sold their old house and came to live with me while our new home was being built.

      That was when his 'foot drop' started.

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"The key to success isn't much good until one discovers the right lock to insert it in." Tehyi Hsieh

OZpals Carer Perspectives - Roly Griffiths

    As a Carer, how have I coped? Firstly, it would seem that here in New Zealand we enjoy a higher level of Government support than do most, so I have probably found the job a little easier than have many CALS.

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"Failure to recognize possibilities is the most dangerous and common mistake one can make."                            Mae C. Jemison

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