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.

Rather than mentioning rehabilitation, my plan of care included tracking my disease progression, promises of pain relief, and what seemed like a lot of durable medical equipment. It struck me that everyone 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 mind funk, I’d have to mentally reframe my situation.

Aren’t we all slowly deteriorating due to aging? I pondered. Shouldn’t we 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 it 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 was clear 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 at right now?” My doctor and 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. 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 potential.

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

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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.