Life with ALS

How do people live in the moment and make the most of life when diagnosed with a terminal illness? Upon initial diagnosis of ALS, families are often overwhelmed by the immediate emotions one might expect; shock, sadness, anxiety and confusion. There is a whirlwind period that follows, trying to grasp the diagnosis and how it will impact their day to day lives and future. Once some time has passed, and the dust settles a bit, there is an opportunity to develop a new normal and embrace the present.

Take time to reevaluate your life

Acknowledge your accomplishments and things that you would still like to do. Take stock of the things that mean the most in your life and focus on them. Illness has a way of forcing us to shift our perspective. Rarely do I ever hear “I should have spent more time doing housework or more hours at the office.”  People most often identify quality of life and meaning with time spent with loved ones, participating in things that they enjoy or things that have brought them a sense of purpose.

Think outside of the box

Continue doing what you enjoy for as long as possible. This can take some creativity. For example, if you love to cook and find yourself losing hand mobility, enlist someone to teach and/or create a family cookbook. If you love to travel, do so with adjustments/accessible resources. If you are no longer able to travel, bring the places to you through pictures, youtube videos, etc.  Explore new interests.

Honor and acknowledge your feelings - but don’t get stuck

It is to be expected to experience feelings, such as anger and sadness at different times, but if you start to notice having more bad days than good, it is worth considering discussing with your doctor or finding avenues to express your feelings. Taking a daily inventory of how you are feeling emotionally can be helpful.

Knowledge is power

Know your resources and where to find them. Attend ALS Clinic as recommended by your physician. Connect with ALS United Georgia and MDA.  These organizations offer strategies, skills and services to help you maintain your independence as much as possible throughout the disease process.

Living in the Moment - CLICK HERE