How to Push Back the Mental Walls of ALS

 My ALS diagnosis was in 2010; in the months that followed, I tried to learn as much as possible about the condition and how it would affect my life going forward. Imagine my disappointment to discover that medical experts knew almost everything about the physical progression of ALS and what to expect at each stage of the disease. But, they were only beginning to understand the emotional impact on patients living with ALS.

The general assumption seemed to be that if a person has ALS, then he or she must be depressed and have a low quality of life.

Why such low expectations

Experts pointed to the loss of mobility and how it limited ALS patients from getting out and about and having social interactions. Losing the ability to communicate was said to make patients mere observers of conversations. Eating and swallowing issues narrowed their food choices. And learning of the dismal longevity predictions (2-5 years), caused patients to adopt a “why bother” attitude. I realized that being surrounded by such low expectations, it was no wonder the world around ALS patients became smaller, and their “mental walls” closed in as well.

What “other” experts said

Continuing my search I found studies that described the complete opposite.

For example, one study, “Coping with amyotrophic lateral sclerosis: an integrative view” showed that severe functional impairment does not automatically lead to a lower quality of life and symptoms of depression.

Another study, “Survival in Amyotrophic Lateral Sclerosis: The Role of Psychological Factors” concluded that patients with ALS who demonstrated a positive psychological well-being had a lower risk of dying and a longer survival time than those with psychological stress.

These studies identified that the best predictors of emotional well-being were:

·        the patient’s perception of social support,

·        their coping skills,

·        and their ability to assess and reframe the problem.

This to me, explained why I read about ALS patients who accepted their diagnosis and seemed to effortlessly “move on” with their lives. They “found a way,” adopted a personal mission, and continued to participate in family and social events; many joined fundraising and awareness campaigns as well. Others traveled, joined sporting events, and remained noticeably positive, optimistic, and hopeful.

I wanted to follow their path.

This is why I am so adamant about the benefits of adopting a positive mindset, practicing reframing, and honing our coping skills. Because those skills are all vital to maintaining resilience and increasing longevity for those of us with ALS.

It is important to remain relevant, to matter, and to have value.

I use the strategy of being aware, accepting, and adapting. Become aware of what has changed, accept the change, and then adopt or try alternative solutions that allow me to continue to live a meaningful life.

A few examples of Aware, Accept, Adapt

·        I enjoyed teaching and leading workshops at my local fiber guild. When I began losing my ability to speak clearly, I looked for other ways to remain involved. I transitioned to writing the monthly online newsletter; a responsibility that kept me involved and active with the group.

·        In my pre-ALS life, exercise was an hour of yoga or calisthenics, but now since my energy level has dropped significantly, one hour is impossible. Rather than give up entirely on healthy movement, I break my exercise routines into short 15- to 20-minute bouts spread throughout the day.

·        When I began to experience swallowing issues, I experimented with using a thickener for my beverage.

I’m able to maintain my social support, expand my coping skills, and think creatively to solve my health challenges. I believe you can do this too.

My suggestions for you

·        Discuss your needs with your caregiver and family. Identify what’s changed and ask for their help in finding a solution.

·        Initiate activities or events. Don’t wait for the invitation; be the one to invite others along. Let friends know what you don’t want to give up.

·        Have to give up driving a car? Be a go-along. Accept invitations to go along on short errands. The world is interesting; I’m always surprised by what I see while waiting in the car while riding along with my husband.

·        Put events on the calendar. Let everyone know and be part of the plan when something important to you is ahead.

Don’t the ALS walls close in on you. Try my tips to help your emotional well-being and learn to live well while living with ALS.

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 FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS:

Learning How to Pivot When Living With ALS

Banishing My ALS Thought Loops and Living One Day at a Time

Dagmar Munn
ALS and Wellness Blog

If you don’t like something, change it; if you can’t change it, change the way you think about it.

 

A version of this post first appeared as my column on the ALS News Today website.