Coping Skills – Mind, Heart and Life

As I mentioned in an earlier post, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

Today’s manual, “Coping with Change” also has some excellent insights into getting through the

shock of a life changing diagnosis and moving on with your life. It is meant for the individual as well as the family members. The author’s writing style is comfortable and personal – like he is talking directly to you. I highly recommend reading this manual no matter where you are in the process of living with Kennedy’s Disease.

Table of Contents

·         Coping with the Diagnosis
Beginning Your Journey
Reactions to the Diagnosis—The Author’s Observations

·         Coping in Your Mind
Accommodation
Acceptance
Self-survival
Decision Making
Feeling Different and Isolated

·         Coping in Your Heart
Caregiving 
Intimacy and Sexuality 

·         Coping with Life
Just Between You and Me 

“This manual is designed to provide a framework for you to consider thoughts, feelings, and responses to the diagnosis of ALS—in yourself or in a loved one. As such, it is written in an informal and personal manner. The manual consists of four sections. 

The first section, “Coping with the Diagnosis,” explores reactions people may have when they, a family member, or a friend is diagnosed with ALS. Understanding the broad spectrum of normal responses may assist you in knowing that you are not alone in this disease. Anxiety, depression, communication, and support will be discussed.

The second section, “Coping in Your Mind,” presents some possibilities for helping shape your thinking, as well as ways to live through the various transformations you will experience. Such issues as accommodation and acceptance, decision-making, and quality of life are discussed. 

The third section, “Coping in Your Heart,” covers caregiving and how an individual living with ALS can come to terms with receiving help from others. In addition, issues surrounding intimacy and sexuality and how these personal concerns are affected by ALS are candidly discussed.

The last section, “Coping with Life,” focuses on living life to its fullest. This segment looks at both the possibilities and the difficulties of managing your life with ALS.”

I will reiterate, no matter where you are at in the process of learning to live with Kennedy’s Disease, this manual will be helpful for both you and your family.