Re-Framing: How to Live a Balanced Life While Living with ALS (Part 3)

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In PART 1 and PART 2 of the ALS Life Dimension Model we learned that despite having ALS, you can impact and improve the quality of your life by adopting resilient attitudes and behaviors. This continuation blog post takes us through two examples of using the three-step process:

1.       Assess what has changed and your feelings about that change.

2.       Re-frame the change into a challenge.

3.       Balance and re-balance each life dimension.

First, an example from my own life:

Ever since moving to Arizona I always looked forward to the first Tuesday of each month! - - That’s when a group I belong to holds its monthly meetings. Our membership is made up of local fiber artists and crafters. For me, the monthly topics are so interesting and the members so enthusiastic that I always leave in high spirits and feeling completely rejuvenated.

Even as my ALS symptoms increased I remained an active member; serving as vice-president, and teaching several workshops. But last year, with the onset of dysarthria (the loss of effective control of my voice) I thought my days with the group were over for good.

What changed?  My ability to communicate and connect with others.

My feelings?  They engulfed me: I felt angry, sad, worried, dejected and more! But, I took the time to examine each feeling; testing against logic and reality. For instance, I worried that my slow speech would cause others to assume my mental abilities were slow as well. I imagined ‘worst-case’ scenarios that had me at the meetings but sitting all alone in the back of the room and eventually dropping out of the group altogether.  Both imaginings were of course, false. Nobody would think I’ve suddenly lost my ‘marbles’ and these are not the kind of folks who would shun me for having a disability.  

It took courage, but one by one I faced each fear while keeping myself grounded in the ‘present moment.’

How did I re-frame?  When the position of writing the group’s monthly online newsletter became available - - I volunteered! It was a perfect fit that allowed me to continue to participate, to contribute by way of my computer skills and the job didn’t rely directly on oral communication.

Yes, it was a huge learning curve, but a fun and challenging one. I have the freedom to add creativity and special effects to each newsletter and the positive comments that come from members enhance my sense of value as a person.

And - - I continue to look forward to the first Tuesday of the month and sharing, learning and laughing among supportive friends!

My experience in terms of the ALS Wellness Dimensions Model would look like this:

My second example is of an experience we all share - - our diagnosis.

What changed?  Too often, patients and their family members have had bad experiences surrounding the moment they received the diagnosis of ALS. They may have heard, “I’m sorry you have ALS/MND. This is a fatal disease for which there is no cure. Most patients live from two to four years. Go home and get your papers in order.”

Maybe their physician did deliver the diagnosis with compassion and even offered support BUT upon arriving home, “Dr. Google” was consulted.  Days and weeks were spent scouring the Internet; reading gloom and doom articles about the disease, rants against the medical system and of the tempting bogus treatments found on unscrupulous web sites.

Our feelings?  We all share the psychic ‘trauma’ of the diagnosis; of learning that our lives have changed forever. A trauma that can send some of us into the stress responses: flight, fight or freeze. Anger, denial, sadness, fear are all valid emotional responses - - but unhealthy emotions to hold onto for the months and years ahead.

How to re-frame?  We can take advantage of our brain’s neuroplasticity - - our brain’s ability to reorganize itself to recover, relearn and even reverse specific thinking patterns - - to re-frame a new more positive memory of our diagnosis.

This one, offered by the very helpful international non-profit organization, ALS Worldwide can become your new template. 

"You have a serious neurological disease called Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease and Motor Neurone 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." http://alsworldwide.org/care-and-support/article/a-new-kind-of-diagnosis

I suggest you save it and read it once a day until this becomes your new memory, your new ‘personal story’ of your diagnosis - - One that will allow you to re-balance your life dimensions and move forward; to focus on your Life, not on your disease.

I look forward to your feedback and comments - - as well as your success stories!

Dagmar Munn
ALS and Wellness Blogger

“If you change the way you look at things, the things you look at change.”

Dr. Wayne Dyer

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