• Defining Moment

    A Source of Strength

    Diagnosed with early-onset Alzheimer's disease, a PT draws courage from her former patients' determination.

    Author Defining Moment with Patient
    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 Defining Moment - Retirement Celebration
    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.


    Author Defining Moment

    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.  


    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
    Dearest Cousin, Nancy ~ I always knew you were smart and brave (after all, you braved living with me, Rich and our wild 2-year-old while you were in school!) But, you are also an inspiration and blessing to all who know you. I know we are 3000 miles apart physically, but you are near in heart ~ always! Love you, dear one!
    Posted by Connie on 5/7/2015 12:29:18 PM
    Nancy, Dear friend from those sweet days working together in the rehab center. I know we've lost touch, but I read this with absolute awe in you and your remarkable bravery and strength to talk about your diagnosis and share with so many. I wish you continued strength as you face your disease with grace and courage. May you find find ways to lean into your family and friends and know that so many of us think of you fondly and with love and admiration. I'd love to visit sometime. Please email me any time. xoxo Kristy
    Posted by Kristy Hegnauer on 5/12/2015 9:13:51 PM
    Nancy is my friend! I just love the idea of that!
    Posted by Dan on 5/13/2015 12:01:44 PM
    Nancy and Joel. I started reading this story with no idea it was describing friends. I am back in WA and would love to have a chance to catch up. Thoughts and prayers for your challenges. Love, Cathy
    Posted by Cathy Koenig Chevalier on 5/13/2015 11:46:21 PM
    Dear Nancy and Joel You are a blessing to the physical therapy community, to the community of your patients and friends, and now to the community of those touched by Alzheimer's. Your courage to tell your story, and educate others on the impact of your disease, is beyond admirable. It's awe inspiring. Your enduring spirit Nancy, and your laughter laced conversations, are your legacy. Thank you for sharing, my friends.
    Posted by Ali Schoos on 5/20/2015 12:52:53 AM
    Cathy, thanks for your comments. You can contact me through the clinic website, www.lsspt.com, where the phone number is found.
    Posted by Joel Johnson on 5/20/2015 11:09:26 AM
    Thank you to all of those who have left a comment, your words are a gift to me and I cannot tell you how much they mean to help keep me going and to work harder to get the Early Onset message out there! If you want to contact me, call my husbands office at 253-736-2340 to leave an email so I can respond back to you. Thank you.
    Posted by Nancy J on 5/20/2015 2:05:13 PM
    Thank you, thank you, thank you for sharing.
    Posted by Shaena Robison -> AITZ>J on 6/10/2015 9:24:39 PM
    Nancy and Joel, Thank you for sharing not only your story but also your life with so many people and for rising 3 wonderful men! You two have always made me feel as I was part of your family and not everyone has that ability to love with wide open arms. Prayers and love to you and the whole Johnson clan. (p.s. Go Dawgs.
    Posted by James Jensen on 6/30/2015 5:03:21 PM
    Nancy and Joel, I am sitting here wondering what words I can say that could possibly convey how I am feeling. Although we haven't been in touch I still feel a closeness to you both. You both mentored me in my younger years to be a better Therapist, Parent and person. My heart and prayers go out to you. Nancy your courage in sharing does not surprise me one bit I am only sad that I found out this way. I can't wait to have Joel email a pic of him in a WSU shirt. Love Cathy & Steve Wilson
    Posted by Cathy Wilson on 9/8/2015 10:49:57 PM
    Wow Nancy, what a story! My sister in law who was a NURSE too has similar DX. My heart goes out to you both. Thank you for sharing. Thank you for keeping your courage and being a blessing in the profession you grew to love. I am sure you were there for many patients,. and they are grateful for your service. I pray you message will continue to be a spark for many out there and an encouragement as they see you! Thank you Nancy! Mary PT
    Posted by Mary Martin -> @KY[= on 5/10/2016 4:35:44 PM

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