You will find everything from silver to booklets listed here, if anyone has a pet project that you would like to add to this list please let me know.

"Recipes for Life" Cooking with Passion

In the year 2000, when Mary Lou Krauseneck was diagnosed with ALS, we were all filled with such a sense of hopelessness. When we literally stumbled upon the effort of ALS TDF in Boston, we immediately started brainstorming for a way to support their work. Our first cookbook, in many ways, was like a lifeline for us and especially for Mary Lou. It was a way to focus on something positive, a way to raise much needed awareness for a disease that nobody knew anything about, and most of all, it was a way to share our love of cooking and life's celebrations with family and friends.

Little did we know that our first fundraising efforts would help lay the groundwork for the world-class research engine that today is called the ALS Therapy Development Institute (ALS TDI). In a relatively short span of time, ALS TDI has become the world's leading research organization focused solely on finding a treatment or cure for ALS. This is mind boggling considering that in 1999, Jamie Heywood began ALS TDI in his parent's basement with $10,000 in "seed money" from his brother Stephen, who was diagnosed with ALS at 29 years old.

Our cookbooks grace thousands of kitchens across America. They are a constant reminder of how with determination and people working together, extraordinary things can happen and truly make a difference in our world.

Mary Lou was so proud of the efforts by so many to fight ALS. She was source of inspiration to everyone as she lived with grace and courage while battling ALS. Equally important, was the way that she encouraged others to fight ALS with passion and dedication. The disease that took her life (March 20, 1954 - February 20, 2007) did not deter her enjoyment of food, friends and wonderful times spent together.

Our hope is that you will support and enjoy our beautiful new cookbook dedicated to Mary Lou and all of those who endure and lose life to ALS. Please continue to share your knowledge of ALS with those around you. Along the way, when you open our newest cookbook, smile as you remember Mary Lou and her great gifts to all of us.

Passionately,

Bernadette Cooper & Amy Whipple
(Sister of Mary Lou) (Niece of Mary Lou)

 

Nobody Tells a Dying Guy To Shut Up

If you knew you had only a few years to live, how would you use that time? Would you allow despair to overwhelm you or would you find a way to still have a life? How could you keep the fear of death from ruining the days you had left?

Many people have considered these questions in theory, but when Dave Chilcoat was diagnosed with Lou Gehrig’s disease, a fatal illness for which there is no treatment and no cure, he had to face them in reality.

The day he received his diagnosis Dave began writing a journal. Soon, to keep family and friends updated on his condition, he posted his journal online. He wrote weekly for nearly three years and his chronicle was read by tens of thousands around the world.

This book is the heart of that journal, the living account of an ordinary man who faced death with a unique brand of humor, an unshakable faith in God’s goodness and grace, and a heart open to God’s purposes.
 

 

Comfort is a Recipe Dean McGregor

 

Well Dean's cookbook is completed! We are waiting for the first copy to arrive, then we'll order more - fingers crossed.

For more information contact:

Dean and Danette teva.cleo@shaw.ca

Thanks Dean and Danette

River of Hope: My Journey with Kathy in Search of Healing from Lou Gehrig's Disease

by David Tank

This true story of bravery and love chronicles the joys and frustrations of a Wisconsin woman as she fought to beat and made progress against Lou Gehrig's disease (ALS). "River of Hope" is one of the few books to show that there is hope for those battling neuromuscular disease. Many readers comment that River of Hope as much a love story as a resource about health care.

 

Told from the perspective of her husband, "River of Hope" reveals how the established medical community failed Kathy nearly every step of the way and how she discovered a sense of hope through alternative approaches to treating her disease. Kathy's story of determination to beat a disease that the "experts" told her was unbeatable, is both inspiring and tragic, hopeful and heartbreaking.

 

"River of Hope" is a rare and intimate look into a mysterious disease that, unfortunately, is no longer quite so rare and may not be as mysterious as we thought. You will discover what the couple learned while researching health issues related to toxins in our foods, environment and medicines, and find out what was working for Kathy.
 
Kathy Tank was diagnosed with ALS in 2006, after 18 months of misdiagnoses and medications that made her condition worse. After recognizing that the medical establishment had nothing helpful to offer, the couple did considerable research into the subject and concluded that Kathy's ALS was most likely caused by environmental toxins, pharmaceutical drugs and mercury from dental fillings. When Kathy began to make progress in reversing the symptoms of her disease, the couple was convinced that they were on the right track. Unfortunately, in late 2007, Kathy died due to complications from a fall, not directly from her ALS.

 

This book may make you laugh. It may make you cry. It will probably make you angry. And it definitely will make you take a more critical look at the care, or lack of care, that you receive from your health care providers and inspire you to take control of your healthcare needs.

 
Available from Planert Creek Press http://www.planertcreekpress.com and Amazon.com.

Also available as an audiobook and Kindle e-book

 

Paperback, 214 pages
37 Photographs
ISBN Number:978-0-9815064-0-1
Date Published:July 2008

 

What People Are Saying about "River of Hope"...

 
"A story of bravery and love."
--Dan Lyksett, Eau Claire Leader-Telegram

 

"River of Hope caused me to reflect on my own spirit and how I might better honor my own wife in our day-to-day walk. Kathy's story is in good hands."
--Michael Perry, best-selling author of Population 485
 
"This book is far more than just a resource of information to assist families impacted by any life altering illness; it's a story about humanity, from the doctor's offices to our most treasured caregiver. If we are brave enough to step 'outside the box,' there is hope!"
--D. Erickson, N.W. Wisconsin ALS Outreach Support Services

 

Hard Times Living In The Shadows

Set in a notoriously poor Appalachian region of Kentucky, this story chronicles the life of Sheila and her seven siblings as they experience one tragedy after another.  After her coal mining father passes away at an early age, Sheila and her family struggle to survive under the direction of a mother who can often provide little more than beans and cornbread for long stretches of time.  As the family weathers tragedy after tragedy, the siblings believe they have seen it all until Sheila must face the most difficult trial of all, Lou Gehrig's disease.  Experience the true meaning of what it means to struggle and triumph as a family in this tale of how one group of siblings must come of age in the grip of poverty.

Sheila is on the board of the ALS March of Faces and a friend.  After prying the book from Shirley's hands I am finally getting a chance to read it.  Although I very seldom do much reading anymore (don't have time) I am thoroughly enjoying this book, and would highly recommend it.

If you are interested and would like to order a copy, just contact Sheila at: sheila.t@comcast.net  .  The book is $20 US which includes shipping in the continental US.  Not only that but if you mention that I sent you she will give you an autograph as well!

Just can't beat that with a stick!!

Walking Through the Valley - Dealing with the Prospects of Death with Bulbar A.L.S. (Lou Gehrig's Disease)


Every person’s journey through life has seasons of challenge and times of great change. But knowing what scripture says about the true reality of our existence provides us with joy, strength and faith to go through the struggle and rise above it. Read how a man with great faith journeys through a seemingly hopeless situation with peace for the day and great hope for the future. It is not an easy journey, but one well worth the eternal reward. Whatever your situation, you will be challenged and encouraged.

For Ordering Information 

Reverend Howard C. Lund, dipTheo, BEd,MEd was a pastor, teacher, principal, and writer. He has used his gifts in administration for the cause of Christ, seeing wonderful things accomplished. In August 2004 he was diagnosed with Bulbar A.L.S.and has gone through life-changing events. Still he stayed faithful to his faithful God. Rev. Howard Clifford Lund went home to be with his Lord in the early morning hours of December 9, 2005. His wife was able to witness his peaceful passing in their home. Born October 12, 1946 his years of this life were spent impacting others with the good news of Jesus Christ, preparing them for the life to come. He was a pastor for 15 years as well as being the principal of Rosebrier, Foothills Christian Academy, Leduc Christian Academy, Millwoods Christian School and Prairie Jr./Sr. High School. He is survived by his wife of 38 years – Ann, four children - Jacqueline (and Dan) Vandermeer, Trevor (and Karen) Lund, Shawn (and Shirley) Lund, Janine Lund, and eight grandchildren. Look for his second book to be published soon.

Poems

Mervin Vindevoghel, whose poems have been featured on my web site, now has a book of poems.  The price is $10.00, with proceeds going to the ALS Society.  If you would like to purchase a copy, please contact Merv by email or telephone.  His email address is vindy@sasktel.net , his telephone number is (306) 543-8204.

"From what we get, we can make a living; what we give, however, makes a life." Arthur Ashe

“I Believe”

Louise Brown has recorded a CD of spiritual songs entitled “I Believe”, and it includes such favourites as “Climb Every Mountain”, “The Lord’s Prayer” and “Ave Maria”.  If you would like to order the CD (or cassette), please phone Tom Brown at 306-761-2605.  The price is $15.00

"A happy person is too satisfied with the present to dwell too much on the future." Albert Einstein

Book Published by the ALS Society of Alberta

(the following books and booklets can all be ordered from the ALS Society of Alberta: http://www.alsab.ca/order.html


Grandpa, What is ALS?, By Bonny Gold-Babins - $10

This is the story of the love shared by a grandfather, who develops ALS, and his grandchild who learns to accept and understand the disease. Their special bond remained unchanged.

This book is for the whole family regardless of age.
 

"The quality of a person's life is in direct proportion to their commitment to excellence, regardless of their chosen field of endeavor." Vince Lombardi


Cries of the Silent, by Evelyn Bell - $12

This book opens a window of understanding into the ravages of ALS (Lou Gehrigs Disease) and into the mind and soul of a truly remarkable woman. What a privilege it is to meet Evelyn Bell in each painstakingly carved word! Readers will not wonder ever again what it must be like to have ALS. - Suzanne Lawson, Executive Director, ALS Society of Canada

"Courage is not the absence of fear, but rather the judgment that something else is more important then one's fear." Ambrose Redmoon


ALS Canada Resources



A Manual for People Living With ALS - $20

This manual provides information and helpful hints that will assist people with ALS to manage their new challenges. Chapters include What is ALS?, Coping with ALS, Your Healthcare Team, Adapting to Breathing Difficulties, and others.
 

"Life is a succession of moments. To live each one is to succeed." Corita Kent


Resources for ALS Healthcare Providers - $25

This book provides healthcare providers with some information on the challenges presented by ALS, by summarizing and presenting literature and resources available as accurately as possible.

"You get wisdom through tough times not easy times." Joyce Meyer


Basic Information Series - $3 per booklet

This series of booklets, created in 1990, provides an introduction to various topics faced by people with ALS, their families, and their caregivers. Titles in the series include:

"There is no passion to be found playing small - in settling for a life that is less than the one you are capable of living." Nelson Mandela

Resources from Other Units



Making Sense Out of the Senseless - The McFeat Family ALS Journey - $15

This is the story of the 20 month journey of the McFeat family which ended with the deathof Forrest McFeat. They have attempted to outline the physical and emotional family and individual journeys as completely as possible. They hope the story will be helpful to everyone, especially patients and their families, the medical profession, researchers, and government departments.
 

"Arriving at one goal is the starting point to another." John Dewey


Someone You Know Has ALS, by Lois Clark - $5

A simple way to help children understand and cope with ALS.

"Never look for excuses. Instead of surrending to failure, find a way to succeed." Dr. Ben Carson

 

 

MGM

 


 

 

 

 

 

 

© ALS Independence 2003-11