By: Victoria M Pavelko, MS CCC SLP ...and Daughter
“Mom, I have already told you 3 times this afternoon. I am going to the movies tonight with Andrea at 7:30pm”. My mom had Multiple Sclerosis (MS) and no one in my family had received the official diagnosis at the time. It’s been almost 20 years since I remember standing in my kitchen, feeling frustrated and repetitive, as I explained my Friday night plans yet another time as she had already asked several times throughout the afternoon and dinner.
My name is Victoria – I have chosen a career as a speech pathologist, but I have also shared in my mom’s fight with the progressive neurological condition of MS. In 1999, my senior year of high school, my mom fell on the playground while supervising her Kindergarten class and could not stand. Paramedics were convinced it was due to the heat and did not transport for additional testing. Weeks later, she tripped, fell, and returned home from walking with a friend sporting a bloody lip and face. My Dad appeared concerned, yet it was never discussed after that day. Her balance and coordination slowed during shopping trips as I remember her saying, “Slow down, Victoria. I’m dizzy.” Something was clearly ‘not right with Mom’ during my final years of high school.
Blessed and grateful for ‘finding my calling’ as an undergraduate in hearing and speech science classes, I also began to learn how progressive neurological conditions can affect speech, swallow, and cognitive functioning. Meanwhile, phone calls home from college became more and more frustrating as it was difficult to follow my mom’s ‘train of thought’. Slurred speech was passed off as “I’m tired from teaching all day.” A gluten allergy was the excuse used for poor balance when standing and falling within the bathroom. By the end of my undergraduate years, my mom received, or possibly had the courage to finally share with her children the official diagnosis of “progressing relapsing MS”.
As I continued into graduate school in Speech-language Pathology and learned about treatments and evidenced based practice to fight symptoms of this disease, my mom would say, “The injections make me feel worse than the MS. No thank you.” After graduation, my love for working with the adults blossomed as my mom found peace with retirement. “I just can’t keep up with their energy. I’m so tired by 1pm”. As I learned strategies to help organize thoughts and short-term memory strategies, my mom fought my dad by saying “I’m fine. Leave me alone.” Moving 3 hours away from home after graduation forced my relationship to be more ‘on the phone’ than ever before. As I tried to share tips on improving speech articulation and voice projection, she fought tooth and nail, “Victoria, I don’t need help. This is what it is. I won’t get better.”
I have been a practicing speech pathologist for 18 years now. My mom fought MS for 20 years and has been gone for 1 year. In February of 2021, my dad called to share: “Your mom has a very bad cough. I think I may need to take her to the hospital.” I listened to the cough – and all my years of clinical experience came to a halt. That cough was associated with pneumonia. Likely dreaded aspiration pneumonia, a common cause of death with neurological conditions as the body does not fight infection well and eating/drinking can cause liquids to enter the airway. All of a sudden, I knew too much, but, not enough to protect my Mom. My dad took her to the hospital that night, and her fight ended with a 13 day hospice stay. No goodbyes; no final conversations. MS won.
Everyday I’m grateful for my career path. Some patients embrace their diagnosis and fight like a BEAST. I am given the opportunity to push and encourage as ‘ hard and tough’ as they need me to, while others, just need a listening ear. My mom helped me understand the difference. Quality of life means different things to different people. As a therapist and daughter, I have to meet others on their path. As a clinician, I see the difference swallow exercises and compensatory strategies can make. I witness how speech articulation and voice therapy can improve communication and decrease social isolation. And when patients need strategies to manage daily schedules so they can manage young children and a career, I am helpful. My mom found a peace with understanding the process of surrendering and listening to what her body could handle and, when it was time, to rest.
I am excited and grateful for each day as a clinician and as a daughter of a ‘silent fighter’. May our research continue to advance treatments and potential cures for neurological conditions. May my profession continue to study evidence-based treatment strategies. My mom taught me to always be grateful – I have learned more from her than any anatomy physiology class could ever teach. Cheers to you, Mom, and a future where others WIN against MS.
