Finding Balance - Life with MS

Balance was something I took for granted.  At 46, I was an active person.  I was busy raising three boys and could tackle most any physical challenge I tried.  In May of 2018, that changed.  I woke up with vision issues that first felt like vertigo.  My right eye was continually trying to adjust and focus.  Within two weeks, it had progressed into full double vision in my right eye.  The only way to see anything clearly was to close that eye and rely on my left one.  I was unable to work or drive.  In addition, I developed numbness and tingling on the right side of my face, I lost my sense of taste and was unable to walk in a straight line.   Fear became ever present as I tried to go about everyday life.  The lack of control frustrated me.  I couldn’t be the one running my kids to practices and games, I had to rely on the kindness of friends to help us get everyone where they needed to be.    

 

My balance had changed.  I couldn’t trust my body to do what it was supposed to, and I had no idea why.  Eventually the tingling and numbness led to drooping on the right side of my face, which landed me at the ER.  Two weeks after the first symptoms appeared, I was told by the ER doctor that he couldn’t say for sure what I was dealing with, but I needed to see a neurologist for follow up.  I met my neurologist two days later.  To get to a diagnosis, she ordered MRIs, blood tests and a lumbar puncture.  She told me it would be a couple of weeks before all the results were available to make a definitive diagnosis, but she wanted to prepare me for what she believed she would find.   

Multiple Sclerosis. 

I was devastated at the thought this could be true.  It was confirmed two weeks later, I have MS.  Along with the physical challenges, it brought uncertainty.  Would my symptoms improve?  Would I ever feel like myself again?  What would this disease do to my body?  Could I get back what I had lost?  Would I be able to mother my boys like I always had?  How would this impact their lives?  When would I have a relapse? 

There was so much I did not know about the disease.   Step one was to learn as much as possible about MS and research my treatment options.  Together with my neurologist, we decided on a disease modifying therapy that will hopefully reduce the number of relapses and resulting damage to my body.   My symptoms improved but did not completely resolve.  I still had challenges with double vision and ongoing balance issues.  I remained unable to stand safely with eyes closed.   

Step two was to get busy figuring out how to get better.  I began by evaluating which parts of my overall health I could control and how to work on them.  I wanted to be confident in my ability to be active again.  I wanted my vision and balance to improve, I needed to ski with my family again.  Physical therapy was the first step of me taking back some control of my situation. 

On the recommendation of a colleague, I found my physical therapist.  At the time, I had no idea how special Sarah Kain, PT/DPT and Maine Strong Balance Center in Scarborough would become to me.  I was wobbly and scared.  She saw that, understood and together we made a plan. We ran through a series of assessments, set goals to improve function, and then get to work addressing those goals. These are the assessments that set the stage for my improvement: 

Activities Specific Balance Confidence Scale – This was an extensive list of questions about my balance confidence for all types of daily activities.  I remember realizing how many parts of daily life I didn’t feel confident about my ability to perform.  If I had been confident about all of them, I would have scored 100.  I scored 66.  There was plenty of room for improvement.   

Functional Gait Assessment – This evaluated how I walked.  I showed impairments in walking while turning my head, walking and pivot turn, walking with narrow base of support and with eyes closed.  I scored 22 out of 30.   

Sensory Interaction Assessment – This was used to determine which how my sensory systems (vision, somatosensory, vestibular) had been impacted.  When I tried standing on foam with my eyes closed, she noted considerable postural sway.  This is the technical way of saying I would have fallen over if I weren’t wearing a harness to prevent a fall. 

Oculomotor exam – There will still signs of double vision (nystagmus) and it was evident that my brain, inner ear and eyes weren’t working together effectively.   

The bottom line?  There was plenty of work to be done!  It was a relief to have all the issues and frustrations evaluated, documented and to have a plan.  I had twice weekly appointments with my therapist for about six weeks. She impressed upon me the importance of continuing various exercises at home which I followed through on diligently. Although it was hard work, it felt so good to get stronger and see improvements each week!  

By the time I was done with therapy, I had tackled the challenges that brought me there.  I am quite sure that I would still be dealing with lingering balance and vision issues had I not done physical therapy.  

Special thanks to Jason Adour, PT/DPT and President of Maine Strong Balance Center for creating the environment where people like me can succeed.   

I wouldn’t have expected that having MS would bring more gratitude to my life, but it has.  I am grateful for so many things: 

  • Many more good days than bad. 
  • MS isn’t preventing me from doing what I want to do. 
  • Skiing with my family. 
  • The quick diagnosis I received, so many others wait years to have an answer. 
  • My ‘team’ - the neurologist who held my hand and told me I would be ok and the physical therapist who helped me find my confidence again, laughed at my jokes and became a dear friend. 
  • Finding a personal trainer who helped me find the ‘strong’ inside of me 
  • Finding yoga as a way to strengthen my balance and my mind 

  

The future is uncertain for all of us, but also for me because of this unpredictable disease.  I still don’t have answers to all the questions I had in 2018, but by focusing on what I do know and can control, I have more peace.  I don’t know when the next relapse will be or what it will do to my body, so every day, I do what I can to make sure I won’t look back and wish I had done more. 

National MS Society https://www.nationalmssociety.org/ 
MS Association of America https://mymsaa.org/ 
Multiple Sclerosis Foundation https://mymsaa.org/  

Contributed by: 
Kris Dean 
Marketing Manager – MedCOR Professionals, Scarborough, Maine