Mobility Challenges after an MS Relapse- A Mother’s Day Hike

How Meditation and a concentration on walking, with the support of mobility aids, have led to this moment:

Twelve years ago, I was still recovering from a relapse that had taken place three years prior, but I was doing a lot better.  I could go on hikes, I could exercise, I didn’t need a cane all the time but I often used it for support.   My mom and I took a hike to PantherTown Valley.  You start at the top of a mountain, and take a wide, somewhat rocky trail down, down, down into a lush forest.  Western North Carolina is a temperate rainforest, with an enormous amount of biodiversity.   There is a wide diversity of plant and animal species in PantherTown Valley, and a beautiful waterfall, known as SchoolHouse Falls.  My mother and I made the three mile descent into the valley, and spent the day in one of my favorite places.  We took hikes there throughout my childhood.  I was familiar with the trails, and the beautiful forested valley.  On the three mile trek, back up the mountain, we took lots of breaks.  I even stretched out on a walk and rested there for thirty minutes, to build back up my strength to get to the top, and back to the car.  I got out of that valley, with the support of my walking stick and my mothers arm around my frame.  We got out together.    

Two years ago, I had another disabling relapse.  This one brought a brain stem lesion, and partial numbness that started in my feet, legs, lower arms and hands.  Now the numbness has also come into my scalp and face.  It feels like some small ants are crawling around up there, at the best of times, and like my brain is wounded, cut, and aching at times of intensity of symptoms.  Despite the need to walk with a cane, I was able to keep moving.  Despite the pandemic, I received support from my parents, my brother, my in-laws and my husband.   It is hard being a Mom with MS.  During those days of low energy, and trying to figure out where to put my feet to walk, I stumbled upon a study analyzing the effect of visualization and guided meditation on people with MS and their walking ability.  The study cited that walking ability improved in patients who both listened to music while visualizing walking, and even more improvement in the group that received audio cues of guided visualization, accompanied to music.     I didn’t have access to the same protocol they had, but I started listening to music, and visualizing hikes I had taken in the past.  I grew up taking weekend hikes with my family, so I had lots of content, memories, and sensory experiences to choose from. 

Click Here for the MS Trust Article: Walking improves with mental rehearsal

I settled on PantherTown Valley as the place I really wanted to go, mentally, during my brain walks (mediation sessions).  I had taken a Stress Management class at BYU, where I had learned how to compose a guided meditation, and having listened to many through the years, I felt fairly comfortable just retreating into my mind and recreating the smells, the sights, and the feeling of my feet’s contact with the ground.  I took great comfort in this practice.  I liked to listen to Ralph Vaughn William’s “The Lark Ascending” as I visualized my hike down the mountain, the rhododendron trees that create tunnels with soft humus underfoot, the sound of running water, getting louder as you make your way through to the opening of trees and the beauty that surrounded me.  The sight of SchoolHouse Falls cascading, the musical notes of the water, the sun on my face while I relax and take in these memories and bask in the remembered sensory experience. 

Meditating to my Happy Place

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My feet were so numb, and my energy levels so low.  I bought some Merrel Barefoot shoes and started walking with them; all the time.  They were my fulltime shoes, and I barely wore anything else, because I could feel the ground better, through the thinner soles.  It helped me work through the pins and needle sensations, and feel the ground.  My parents bought me a walker, during the start of the pandemic.  It took all my energy to walk my kids to the park, and I had to put them on their iPads and rest when I got back home.  The possibility of taking the roundtrip hike in and out of PantherTown valley seemed like a remote dream. I lived in Southern California, and though I could take trips and vacations to North Carolina, the only way to get to SchoolHouse Falls is to hike down about three miles, and back up three miles.  I could take a horse, and though I’m an experienced horseback rider, that was before all the numbness.  Taking a horse now seemed like a risky prospect on rough terrain.  Still, I took comfort in the mental retreats during mediation.  I could go there in my memories whenever I wanted, listening to music, or listening to a guided meditation. Still, I yearned to hear the tinkling rush of water hitting rocks, see that rich, iron tinted water at the base, and feel the mica sparkling sand against my feet.  

Then my husband and I decided to take a cross country trip. My parents retired college professors.  (My Dad, Comparative Religion and Philosophy, my mom, Native American History and Religion, with a concentration on Cherokee peoples.) They offered to homeschool our kids during the pandemic.  It was a hard decision to make, but with schools in California and across the country in flux and we felt it was the best decision for our family. 

We packed my rollator in the back of our truck and drove here with a camper trailer we rented off RVShare.  As we went across, I learned how to assist my husband with the set up and take down process of making camp.  It felt so good to be able to help him in that regard, when I was limited in my physical abilities. 

We arrived in North Carolina, had a few days to relax and enjoy family time, then my husband turned around, to take the camper van back to California, and return to work.  

I began simply walking walking with my rollator on a paved walkway by the river.  It was a pain to get it across the street, so I started using my cane more, knowing I could borrow my Dad’s or brother’s arm if I needed to.   We started taking hikes, as my confidence grew.  I used medical cannabis products to help me, because they help me with my endurance, spasticity, muscle spasms and walking ability.   I managed to be able to hike up to four miles, though I had to rest for about three or four days after.  

Still, hiking feels so good.  I am enveloped by the sights and sounds, no longer just in my mind, but clearly, in front of my eyes, surrounding my ears.  My senses are surrounded by not just memories, but the present moment. 

I set an intention.  To hike down to SchoolHouse Falls and back up, before returning to California.

This morning my mom and I were relaxing and planning.  Yesterday I proposed that for Mother’s Day, her and I take a hike. My dad and my brother have volunteered to watch the kids.  While we discussed options, and the subject of PantherTown Valley came up.  I decided to take a leap of faith, with confidence in my abilities and we are going to spend the day hiking down into the valley and back out.  We have a back up plan, and if we get into trouble, i.e. if I cannot hike back out of the valley, that we will call for backup, and the kids, Dad and Jonny could come help us. Dad is going to the grocery store to buy some nourishing food for lunch and snacks. I’m going to pack a turkey bacon sandwich, with greens, Spero Sunflower Cream Cheese (dairy alternative) and, of course, so beets.  I never do any big undertaking without some beets.   

I will pay attention to my energy levels, and if the hike doesn’t seem doable, I will content myself with spending time at the overlooks, and hike back up.

Please wish me luck, and I hope you all have a wonderful Mother’s Day whether you celebrate with your kids, your moms, your Aunts, or your Grandmas!  Without our mothers, we would not be.   I’m so grateful for my beautiful mother, my beautiful mother in law, my beautiful grandmothers, my beautiful aunts and every lovely woman who has shown me motherly kindness in my life. 

May God be with you till we meet again…

More Resources:

• Barefoot Shoes Study Analyzing Gait Patterns in Older, and Younger Adults

• Cause I still want to get back on a horse one day, here’s an article from NMSS on Hippotherapy (Therapeutic Horseback Riding)

• Barefoot Shoe Buy Guide

Disclaimer: Please always exercise safety and caution, and discuss with a health care professional options to help you with your mobility. If you are thinking of trying barefoot shoes or another shoe to help with mobility you could take your unopened shoes to a physical therapy appointment, so if it doesn’t feel right, you can return them after. Or take a support person with you to a shoe fitting at a comfort shoe specialty store to try different shoes. If purchasing shoes online, have someone close by while you try them out.

Second Disclaimer: I am on Ocrevus, which has tested positively in preserving walking Mobility. I was in a Clinical Trial for the drug Elezanumab last year, thought the endpoints were not met, and it’s not proceeding to Phase 3 trials. I don’t know exactly which thing, or which combination of things have been helping me with my mobility. I just take it one step at a time.

Third Disclaimer: Everyone’s MS is different and everyone’s mobility is different. You are awesome for being as mobile as you can be, no matter what kind of mobility aid you use! 🧡🙌🏼