Are You Stuck in the ALS Waiting Room?

 

ALS life involves a lot of waiting. We wait for people to help us with daily tasks, we wait for medical test results, and we wait for new ALS symptoms to appear. But it’s the constant thoughts of despair and hopelessness that put us in what I call - - the ALS waiting room.

What is an ALS waiting room?

The ALS waiting room is a mental space I retreated to shortly after my ALS diagnosis in 2010. While I was in it, I asked questions like, “Why me?” And I spent a lot of time dwelling on my losses and avoided pondering the future.

Luckily, I read motivational books that helped me to accept my disease and to build a new future. I felt better and was able to leave my ALS waiting room for good.

But when I attended my first ALS support group, I quickly learned that there are many versions of an ALS waiting room - - and, some are not so easy to leave!

My support group meeting...

That afternoon’s support group meeting began with each person sharing a bit about themselves. A woman sitting near me began with, “Hello everyone, my name is ____.” Then, she said matter-of-factly, “I’ve had ALS for three years now, and I’m waiting to die.”

The room fell into an awkward silence, but only for a few moments. Then the introductions carried on; no one commented on or acknowledged her announcement. No one seemed shocked.

Three months later, I received word that this poor woman had indeed passed away. Her ALS mental waiting room had no way out.

I was stunned that someone could spiral so quickly down a path of hopelessness. I wondered how can I prevent that same state of mind from happening to me?

ALS mental well-being ...and hope

I soon discovered that my question had already been the focus of many studies. I found a thematic synthesis of 29 studies covering 342 individuals with motor neuron disease that proved to have the answers I was searching for.

The study identified physical functioning, social interaction, independence, relationships, and occupations/hobbies as essential life elements for ALS patients. When we experience loss in any of these areas, our reaction can either be one that encourages hope and coping, or a reaction that hinders those feelings.

For example, a typical reaction to loss might be withdrawing from activities or interacting with others, increasing dependency or neediness, and becoming more isolated. All of these lead to periods of hopelessness, or what I felt when I entered my imaginary ALS waiting room!

On the other hand, responses to loss that foster hope and coping include:

• Challenging the loss or problem through assessment of alternative solutions. Thinking outside the box. Asking others for input and being adaptable.
• Accepting the loss or problem without resigning to it. Changing your mindset and remaining positive.
• Focusing on what can be done to resolve the situation. Planning ahead, allowing more time, or asking for help.
• Retaining control, independence, or final decision-making. Empowering yourself. Remember that your response is more powerful than your circumstance.
• Relying on supportive relationships. Involve your caregiver, family, friends, and medical team. Reach out to internet groups and forums.
• Proactively using functional and technological assistive devices. Staying current on what is available, listening to your medical team, and checking with your ALS care services coordinator.

We all have times when we feel lonely and discouraged. The ALS waiting room can surprise us and pop up at any time (and possibly, many times) during the course of our illness. 

But you can spend less time in the ALS waiting room or, avoid it altogether by putting in place some of the proven research-based strategies listed above. Let's learn to live well while we live with ALS.

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Dagmar Munn
ALS and Wellness Blogger

 “If you’ll never try you’ll never know.”  - Unknown-  

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