L.K.

Describe your life at your healthiest point.

I was busy pursuing the American dream, juggling a successful career in tech, traveling the country, meeting celebrities, and striving for perfection as a homemaker to my husband and young daughter. I loved hosting people and always had a home where anyone could come in and feel cared for. I believed I had a strong faith in God before this happened but looking back, I really didn’t understand what it meant to believe that hard circumstances could bring beauty, purpose and value and to live that out on a daily basis.

How many years before your diagnosis were you experiencing Stiff Person Syndrome (SPS) symptoms?

At age 11 (1997), I experienced debilitating back pain that was never investigated or treated. I always struggled with walking for long distances and was hospitalized at 14 for anemia. During my second pregnancy in the winter of 2019, I began to have spasms and stiffness of the eyelid but it was attributed to perhaps a strange side effect of being pregnant. An acute severe rigidity episode onset in the summer of 2020 led to a hospitalization during my third trimester and after two bedridden years of testing, hospitalizations and rehabilitation, I was diagnosed with Stiff Person Syndrome in the spring of 2022.

Describe your most debilitating symptoms.

My body can experience complete shut downs by agonizing, total-body stiffness and muscle spasms. I become so rigid that nurses, doctors, and EMTs fear they will break my limbs if they attempt to move me. My feet and hands curl up and I become so stiff that I am frozen in whatever position I am in when the spasms begin. I have had a catheter because I become too rigid to release my bladder. My eyelids, mouth, and throat muscles become too stiff to open, as well as spasm. I appear unresponsive but am fully aware (a more detailed episode is described below). My cardiologist also believes that my tachycardia (high heart rate) is caused by SPS which makes even minimal movement difficult due to an inappropriately high heart rate during minimal activities. I have also recently experienced dysphagia (difficulty swallowing) which they believe may be attributed to the disease as well.

Describe treatments you have tried, what has worked and what has not.

Prior to diagnosis, I was placed in aggressive and frequent PT and OT rehabilitation. It was helpful to have therapists work to relax the stiffened limbs. Unfortunately, I would have major episodes that would significantly regress progress made. Since diagnosis, I was prescribed baclofen, which was helpful but my heart rate began to drop in the 30s for long periods of time and my O2s were in the 80s. We realized it was impairing my heart and lung function. I was switched to clonazepam but it was not effective at controlling my spasms or sound sensitivity, so I was switched to diazepam. I also have been on IVIg therapy since April 2022. My doctor is currently adjusting dosing and frequency as it has been helpful to minimize my severely debilitating stiffening and spasm episodes which require hospitalization.

Describe a time you received compassionate care.

My sweet PT and OT rehabilitation ladies, Becky Jones and Alaine Thigpen fought for me in my earliest days, pushing for me to be seen by specialists. I was eventually seen by neuroimmunologist and teaching professor at OU Research Hospital, Dr. Nidhibden Anadani, who spent hours listening and evaluating me. She was meticulous but also treated me like a human being. Her care and research have truly saved my life. I am scared to think of the progression of this disease without her intervention. After moving to Dallas, I see specialist Dr. Kyle Blackburn at UTSW who, I can tell, truly cares about my quality of life and is working hard to get me access to the best treatments. I have been immensely blessed to be under both of the care of compassionate and tenacious physicians.

Describe how SPS has changed you.

In the past two years, I have praised, questioned, and cried out, and I am assured we serve a God who can handle everything. He has taught me what it really means to abide: to understand that, without Him, I can do nothing. I never take for granted the beauty of the small things in life. Getting out of bed in the morning, putting my feet on the floor, the miracle of picking up a spoon … all the daily tasks, accomplishments, and decisions that I had foolishly believed were mine, I now know they are all gifts given by God and thank Him for everything.

The last two years have been difficult, but the Lord has used it all for our good. My husband Ben has humbly taken on tasks from diaper changing to helping me wash my hair, and the most important one is being on his knees daily. This season has deepened our love for God and each other. We joke about being trailblazers in ‘geriatric parenting’ as we navigate raising young children with challenges most only experience in post-retirement. We have grown in ways we never imagined possible.

I now also understand that a person’s value doesn’t come from what they do or what they accomplish. Disabled people are people with inherent value whose voices should be heard, seen, and included in a society to which we are often cast aside, ignored, or seen as less than.

What brings you joy?

God has gifted me with a loving husband, two beautiful children, and the love of so many friends and neighbors that it is overwhelming. I have realized that joy is a choice and we must open our eyes to see it and surrender to it in the midst of our suffering. I am amazed at the beauty that surrounds us everyday. When you stop and look at the grandeur of a sunset or experience the kindness of a neighbor, when you understand the power of love in this world, it is life-changing and brings a joy that is everlasting, even in the pain.

What do you want people to know about you?

Sunday, June 7th, 2020, was like any other morning, with the light filtering through the windows and the sounds and smells of breakfast being made by my husband and daughter in the kitchen. I was seven months pregnant, and it was time to get up and start the day.

And then I realized I couldn’t move.

Amid a pandemic, I was rushed to the hospital. My body was shut down by agonizing total-body stiffness and muscle spasms. I was so rigid that the nurses and doctors feared they would break my limbs if they attempted to move me. My eyelids, mouth, and throat muscles became too stiff to open. I appeared unresponsive but was fully aware. To those around me, I was gone. To the One who could hear me in the depths of my despair, He reminded me I was not alone, to trust in Him, and to be thankful in the stillness.

June 7th, 2020 was the day that Stiff Person Syndrome changed my life. For many, you could look and see all the things this disease has taken from me as a wife and mother of young children. But I truly believe that this disease helped me to face a hard reality: the death of all my expectations. I assumed and expected a lot from my life, things I now understand were an illusion of control or thinking I could wield life to my desires and demands. My life was moving at a hurried pace of productivity that robbed me of seeing the beauty of life. I am thankful to have SPS. It has increased my heart in compassion for my fellow man, to love and truly see my neighbor and to see every moment in life as a gift. As difficult as this disease is, I believe it serves a greater purpose to shine light in a dark world, to show that joy can come from mourning, and that we have so much love to give if we just stop and see the people who have been placed in our path. I pray everyday that I have on this earth that I would be remembered as a person who was loved deeply and who longed to impart that love on every person I got the opportunity to meet.

Occupation/previous occupation, if disabled.

Currently retired, but previously a writer and project manager for a tech company. (*Editor’s note: we would argue that you are very much still a writer.)

Misdiagnosed? With what.

Yes. Pregnancy complication, myasthenia gravis, convulsions, Parkinson’s Disease.

What do you want The SPSRF to achieve?

Our family is so thankful for this amazing organization; it has been a comfort to us when we felt so alone battling this disease.

I truly hope that The SPSRF can become a safe place where diversified people can share their common experiences with this disease and feel truly supported.

My hope is that, like the Michael J. Fox foundation has made Parkinson’s a well-known and well-funded disease, this organization can do the same for SPS and perhaps one day, find a cure.