Reframing Our Approach with a New Kind of ALS Diagnosis

Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time.

That didn’t happen.

Instead, I was told I had an incurable disease. Then this was followed by a brief scientific explanation of the path of motor neurons from the spinal cord to muscle, which honestly at that point, tuned out.

Why do so many doctors deliver negative news to their patients in such a manner? It could be because, as Allison Bulat shares in her interview with Your ALS Guide, “...it is possible to kind of get numb to what you (they) deal with... They probably haven't been given that diagnosis themselves.” Or, many as I believe, are uncomfortable telling a patient that there is no hope.

But is there “no hope?”

Rather than mentioning any sort of rehabilitation, my plan of care included tracking my disease progression, promises of pain relief, and descriptions of what seemed like a heck of a lot of durable medical equipment. It suddenly struck me that everyone around me was in a hospice mindset or had what felt like a “deterioration management” approach.

That’s when my 30 years of teaching wellness kicked in. I knew that to avoid falling into a mental funk, I’d have to mentally reframe my situation.

Aren’t we all slowly deteriorating due to aging? I pondered. Shouldn’t we all be encouraged to age well?

Aging well is generally described as accepting your age and abilities while adopting a wellness lifestyle and maintaining a positive attitude. So why not apply the same approach to living with ALS?

Instead of being in a state of deterioration management, I decided to think of my health goals as “maintenance management.”

Creating a positive memory at diagnosis

Rather than remember the words my doctor had spoken: “terminal illness, no cure, and only two to five years to live,” I reframed them into a new, more positive memory.

The following wellness-oriented approach to diagnosis from ALS Worldwide became my new memory:

“You have a serious neurological disease called Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease and Motor Neuron Disease. We don’t yet know the cause of this disease, but it affects the voluntary muscles of the body. Your voice is slurry and your legs are not as strong as they once were. But we can give you medications and supports that can help minimize the symptoms. There’s a lot you can do to help yourself. Exercise and nutrition help maintain muscle strength. Some new medications will help your speech and mood. With our excellent support staff and therapists to assist you, there is reason to be encouraged. Together we can help you live a full, productive life and maintain a sense of hope for your future.”

I shared the new me

My medical team at the ALS Clinic quickly learned that I didn’t have a victim mentality. While I accepted my illness, I made it clear to all that I wanted to remain engaged with my life.

I brought a positive attitude to each visit, asking, “What do you suggest I do to maintain where I am right now?” My doctor and her medical team knew that I wanted them to be partners in my care.

My new mindset meant that my having to rely on a rollator or electric scooter or wear an ankle-foot orthosis weren’t signs of failure — instead, they were positive solutions that helped me to stay mobile and active.

Like-minded ALS patients

I began to meet other ALS patients online who, like me, were focused on creating positive, meaningful lives for themselves while living with ALS. Many of us are members of the ALS News Today Forums, ALS-related Facebook groups, and subscribers to this blog. We give each other support and hope and share solutions.

It’s a new and positive approach. And it’s one that I believe should be adopted by all of those who are involved in ALS care.

The moment of diagnosis can become an opportunity to create hope and explore the potential.

Let’s age well and live well while living with ALS.

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Dagmar Munn
ALS and Wellness Blog

"An untreatable diagnosis is a statement about the medical system, not the patient."

Barbara Brennan

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