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 Author Nancy Johnson, PT, with Patient 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 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 practice—demonstrating 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 them—or words with equally daunting import—at some point in our lives. For Joel and I, it happened much sooner than we would have preferred. Author Nancy Johnson, PT, with spouse Joel Johnson, PT, OCS, at retirement celebration. 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. My husband, in his role as my boss, used to tell me that I was perhaps the least-skilled PT on his staff—but 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 patients—bravery 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.