Home > 2015 > May > Defining Moment: A Source of Strength

DEFINING MOMENT

A Source of Strength
Diagnosed with early-onset Alzheimer's disease, a PT draws courage from her former patients'
determination.
By Nancy Johnson, PT
May 2015
Listen to 'Defining Moment'
"With the extensive amyloid plaques on your brain, along
with the results of the neuropsychological testing, it is clear
that you have early-onset Alzheimer's disease."
With that one sentence, my life changed forever on July 17,
2013.
My career as a physical therapist (PT) began in 1985 at a
hospital-based rehabilitation center. I focused on
neurological rehab for patients with spinal cord injuries and
stroke. One of my favorite memories with my young
patients was ordering pizza for them and taking them to the
top of the hospital so they could look out over the valley and
get some fresh air. We then would have wheelchair races in Author Nancy Johnson, PT, with Patient
the hallways (supervised, mind you) just to be silly. They
needed an occasional break from their own reality.
After giving birth to twin sons in 1988, I moved on to skilled nursing facilities, where I had the flexibility to work part-time. The
ability to have a positive impact on people who were nearing the end of life brought me such joy. Often, when we take the
time to truly get to know older adults who feel marginalized, we become like family to them. They greatly enrich our lives in
the process. I count the ability to touch these individuals as having been among my greatest privileges.
My husband, Joel, who has worked in private practice his entire career, encouraged me to work with him in 2001 on patients
with orthopedic issues. I discovered how naturally my neuro-based skills prepared me to help people who had sports- and
job-related injuries. Joel further convinced me that I could manage my own clinic, so, in 2003, we opened another practice in
a new neighborhood in our community.
Within a few years, our reputation had grown, along with the practicedemonstrating to many people the positive change
that physical therapy can bring to their lives.
But nothing in even the most rewarding career prepares us for certain life-changing events. Or does it?
After experiencing 3 seizures in January 2012, I started to sense subtle changes in my ability to remember things and
process information, although I denied this for many months. Finally, though, after reading the book Still Alice, I consented to
further medical testing. That led to the current transition in our lives.
Alzheimer's is not a disease only of those who are 65 or older. It affects more that 5 million people in this country, 5% of
whom are diagnosed with early onset. The lives of those of us who have this disease will be cut short. There currently is no
cure or effective treatment. The decline in my ability to function will only continue.
By late 2013, my staff could see changes in my ability to carry a full schedule of patients, and they lovingly began trimming
my workload without my knowledge. In early 2014, I started mentoring one of the staff PTs to gradually replace me as clinic

director, a role he assumed that August. By June of that year, I no longer was able to complete daily documentation in
writing, and asked an aide to input it from my dictation.
Throughout these months, staff was vigilant in safeguarding patient care. With my abilities continuing to decrease and my
responsibilities shrinking, however, in mid-December of last year I retired completely from my career in physical therapy.
We've all had patients who have had to hear difficult words such as "complete spinal cord tear," "global left hemispheric
stroke," "inoperable spinal cord tumor," and "You may not walk again." No one ever wants to hear them. Many of us,
however, will hear themor words with equally daunting importat some point in our lives. For Joel and I, it happened much
sooner than we would have preferred.
As PTs, each of us has the ability and privilege to provide
life-enhancing assistance to people in need. I've repeatedly
witnessed amazing courage and love from patients and
their families, despite extremely difficult prognoses. They
found a deeper love and strength than they ever knew they
possessed, as well as the endurance to let their PT and
their physical therapist assistant (PTA) help guide them to
higher levels of ability than they otherwise might have
reached.

Author Nancy Johnson, PT, with spouse Joel Johnson, PT,

OCS, at retirement celebration.

My husband, in his role as my boss, used to tell me that I

was perhaps the least-skilled PT on his staffbut that I
ultimately was his best PT. It is not necessarily our skill level
or the number of letters after our name that determines the
effect we have on patients. Our ability to encourage and
reach individuals on a deeper level goes far toward bringing
positive change.

How does anyone deal with people who have Alzheimer's disease? Like many in our situation, we have seen individuals we
know well either go silent in our presence, because they don't know what to say to us, or disappear from our lives altogether.
Alzheimer's is a grieving process with which each of us deals differently. And that's okay. Most people will process the
situation in time and find ways to engage and encourage the individual who is affected, and his or her family.
Those of us who choose to openly address our disease process urge you to please ask us questions, laugh with us, and cry
with us. We have nothing to hide.
Character is revealed in life's most difficult circumstances. I've learned from years of being a PT that people gain strength
when faced with great challenges. Nearly every PT and PTA has seen remarkable courage in patientsbravery that
sometimes hardly seems possible. Witnessing it tends to strengthen our own courage and gives us insights into how we best
can serve others. I know that my experience working with so many incredibly resilient people is helping me face my disease
with a resolve that I likely would lack otherwise.
I know this isn't your typical Defining Moment column. It is our hope, in writing it, that you will truly internalize the fact that
being a PT or a PTA is a gift that not only enables you to enrich the lives of patients, but that can buttress you against the
obstacles we all inevitably will face in life.

Nancy Johnson, PT, was clinic director at Lakeland Sports &

Spine Physical Therapy in Auburn, Washington. She dictated
this essay to her husband, Joel Johnson, PT, OCS.

Comments
Joel and Nancy, You are both beautiful people with enormous hearts. Your grace and faith shine through you in both your
personal and professional lives. This is beautifully written. I am sending my love and continuing in my prayers for all of you.
Every member of your family has been and continues to be a blessing in my life.
Posted by Krista Parsons on 4/30/2015 5:34:58 PM

My Daughter Teresa shared this with me, for which I am thankful. You have a beautiful spirit young lady, keep up your
wonderful attitude, my prayers are with you. Thank you for sharing your story! Gods love to you
Posted by Shirley Gustin on 5/2/2015 3:37:18 AM

Truly laudable! I know exactly how Nancy feels, I suffer from a chronic disease with many ups and downs and often want to
give up, and it's my patients that give me the courage and will to keep continuing, and of course articles like yours Nancy.
You are very fortunate/lucky to have an understanding spouse who understands your condition and supports you. Good luck
Posted by Aban singh on 5/2/2015 9:54:57 AM

Nancy...it is such a privilege to know you and Joel...and for you to share your story with us. Know always that we are here for
you just as you inspire us to be mindful of the blessing that life is...each and every day. Let's do another date night soon!
Much Love from David and Beth!
Posted by David Jensen on 5/6/2015 1:56:05 AM

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