My ALS diagnosis was in 2010. In the months following, I tried to learn as much as possible about the condition and how it would affect my life going forward. I discovered 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 of living with ALS.
The general assumption is if a person has ALS, then he or she must be depressed and have a low quality of life.
People believe that the loss of mobility limit ALS patients from getting out and about and having social interactions. Losing the ability to communicate could make patients mere observers of conversations. Eating and swallowing issues narrow food choices. Learning of the dismal longevity predictions could cause anyone to adopt a “why bother” attitude. As the world around ALS patients becomes smaller, their mental walls close in as well.
One study, “Coping with amyotrophic lateral sclerosis: an integrative view” reveals the unexpected: 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 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 is why I am so adamant about the benefits of adopting a positive mindset, practicing reframing, and honing coping skills. 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 follow the steps of aware, accept, and adapt. I become aware of what has changed, accept the change, then adopt or try alternative solutions that allow me to continue to live a meaningful life.
A few examples
- 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 now write the monthly online newsletter; a responsibility that keeps me involved and active with the group.
- In my pre-ALS life, exercise was an hour of yoga or calisthenics, but now my energy level has dropped significantly and one hour is impossible. Rather than give up entirely on healthy movement, I break my exercise routines up into short 15- to 20-minute bouts spread throughout the day.
- When I began to experience swallowing issues, I experimented with a thickener for my beverages.
I’m maintaining my social support, expanding my coping skills, and thinking creatively to solve my health challenges.
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 to live well while living with ALS.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.