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This Treatment Helped Me Walk Again with MS

Real Talk

November 08, 2021

Content created for the Bezzy community and sponsored by our partners. Learn More

by Robert Joyce

•••••

Susan W. Lee, DO

Medically Reviewed

•••••

•••••

by Robert Joyce

•••••

Susan W. Lee, DO

Medically Reviewed

•••••

•••••

The results weren’t permanent, but I’ll cherish the memory of regaining my mobility.

Many people take walking for granted, climbing the stairs or walking into the kitchen to make a mug of coffee without thinking twice. But my multiple sclerosis (MS) has steadily been robbing me of this ability.

There were 10 years when I had no symptoms of this condition — no fatigue, no sensory issues, and an ability to walk, cycle, and even run.

However, in July 2014, I was in a car accident and the day after, my right leg felt heavy. It didn’t slow me down, but it was like a flicker in the corner of my eye. The feeling was wrong. I knew it.

Since then, my mobility has steadily worsened. This past July, it was terrible. I had a stairlift installed, as climbing the stairs felt like scaling Everest.

In the trunk of my car, I have a small travel scooter, and just inside my front door, I have a much stronger one, which can manage the Alpine-like hills of Clifden, Ireland, where I live.

In the mornings, I was capable of some movement, but as the day passed, it gradually became worse. Despite using a functional electrical stimulation (FES) device, and a hip flexion assist device (HFAD), I was almost immobile.

My legs were failing me, and it was time to take some action. I contacted my neurologist about my loss, and we decided I should try intravenous (IV) steroids. This would be a 5-day treatment in the hospital.

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Planning for treatment

I had tried IV steroids in April 2020 with fantastic success, but because of the impact of a new pain medication, I lost all the benefits of the treatment over about a week.

It was devastating, and this time I resolved not to try any new therapies, just in case.

This time, it was not possible to be an inpatient because of the extra burden of COVID-19 and a shortage of staff. The prospect of having to drive to Galway and back each day was scary. On top of the trip taking 1 1/2 hours each way, there would be the physical impact of the treatment.

My usual headache (this has a permanent pain level of 5 on a 10-point scale) would be worse, probably an 8, and the insomnia associated with the treatment would push my fatigue to a different level.

I had a day’s break between infusions. My first was on a Wednesday, and the Thursday was a write-off. Friday arrived, and I had to make the trip again. It was hard, too hard.

During the infusion, I asked if it was possible for me to change the plan of every other day to 3 days in a row. My doctor agreed, and I stayed in a hotel near the hospital for the Monday and Tuesday night.

This came with some extra risks. Now I would be away from the safety of home and the hospital and in a place where many people, especially children, were enjoying their holidays. Social distancing, mask etiquette, and the risk of crowds caused me concern.

Using my scooter to navigate this situation was hard, and even though I was vaccinated against COVID-19, I didn’t want to add extra risk. Contracting the coronavirus could make my MS worse.

However, the prospect of being able to walk again — this was my carrot.

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Reconnecting with what was lost

Wednesday, August 11, 2021, was the last day of treatment. I drove home, hopeful there would be some positive impact of the steroids, plus no exposure to the virus.

By Friday I could walk up the stairs. I didn’t have to drag myself up or lift each leg. I felt normal — or at least more normal than usual.

When you lose something, like being able to walk, it completely changes your life. Simple things, like using the toilet or cooking a meal, become mammoth tasks requiring planning, assistive devices, and lots of rest. The trivial becomes monumental.

When you get back your ability, it has added significance. You know its value.

A few days later, I had my energy back. I wanted to see if I could actually go for a walk. Locally, there is the old railway track, which has now been converted to a greenway, where people can walk, cycle, or ride a horse. This would be my test.

Before I headed out, I prepared. I strapped on my FES device to give my leg some extra support. We got into the car, and I was apprehensive. Would I walk or would my legs refuse, lacking the strength or vital connections that enabled me to put one foot in front of another. The time had come.

My limbs were cooperating. I started slow; my legs could move. A rhythm developed, and I was walking. Unbelievable.

It is such a joy to get outside, stand up, and walk. To feel the wind on my face and the warmth of the sun on my back. This simple act of walking becomes a gift when it has been lost and is recovered.

In a video of my walk, you can see how I felt. I was even swinging my stick in a poor attempt at being like Gene Kelly in “Singin’ in the Rain.”

A memory I’ll cherish

Now, nearly 2 months after my treatment, the effect is wearing off. My legs are heavier, and I need to use the stairlift again to get to my room in the evening.

However, I have the memory of my being able to walk, even if it was only for a short period.

Living with a chronic condition, like secondary progressive MS, you become accustomed to gaining and losing abilities. It is difficult when you lose the ability to walk, but when I was able, I walked.

Now I cherish these memories. In these moments when I feel the world is against me, I look at these videos and smile. The joy of the moment is back, and it lifts my spirit.

Article originally appeared on Novemeber 8, 2021 on Bezzy’s sister site, Healthline. Last medically reviewed on October 18, 2021.


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