Feb 12, 2022 • 4M

S is for Spasticity #1

And Swans.

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Jane Gould
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Hi friends,

Several people have asked when you’re going to hear from my daughter, Emily. She’s been working behind the scenes, editing my posts and recordings, and managing the account. She’s going to write soon but has just started her first real job in PR, so is super busy. Please watch this space!

We hope you enjoy this post about spasticity - something I knew nothing about until I lived with it.

Jane x


Spasticity was a brutal part of my journey with MS. It began after about 15 years with the disease, and slowly took over my body like ivy creeping up an abandoned house. It is caused by damage to the spinal cord and results in muscles contracting involuntarily. The muscles in my legs tensed up and gave me excruciating spasms in my lower back. In my case, the only time they relaxed was when I was in a deep sleep. 

I looked like a version of the Tin Man until it got so bad I could no longer walk. Getting in and out of a chair or car to an onlooker was like I was a victim of abuse. I got bent and pushed into the seat. I had to get rolled in and out of bed like a bowling pin. My mum described my legs like a mermaid tail. I was her mermaid. Yes, she’s lovely.

Over the five years living with it, I tried everything I could think of to help my muscles soften - western medicine, eastern medical Tibetan herbs, CBD oil, acupuncture, yoga, stretching, massage, diet, even three rounds of stem cell therapy - and yet the spasticity inched up my legs and into my torso stronger and faster than I could stop it. When I moved to Minnesota from California and met my new neurologist she was stunned that I was still functioning. She recommended surgery to have a medical device fitted to alleviate it. More on that another time.

Photo credit: Christina Lentz

My partner and I live in the Minnesota tundra and behind our house is a pond. It’s big enough for kids to skate and play ice hockey in the winter, and for birds to chase each other and splash around in the summer. A man-made drainage pond, its job is to keep the surrounding farmland dry for a cluster of houses to safely stand. Mother Nature has swooped in and made the space her own. The pond is home to Canada Geese, ducks, three muskrats, and lots of visiting birds. 

We bought our house specifically for the pond as my days are spent sitting in my wheelchair looking out, reading, writing, listening to music, FaceTiming, and doing a bit of paperwork. I can’t drive anymore as I’m still figuring out life in a wheelchair, and my hands are too weak and numb to be in charge of hand controls. That, together with the endless great white winter means that there are some weeks I don’t leave the house at all. 

Before my surgery, I quipped that I wanted to buy a pair of swans for the pond. I thought they’d be a nice addition for my waterfowl friends. “Yes,” my partner replied, “though we’d need to clip their wings to keep them from flying away”. I woke up the following morning, legs strained with contraction, cemented together in a slab of concrete, and back throbbing. My eyes filled with tears as a wave of gloom washed over me. Another day. I couldn’t help but feel as though my wings had been clipped.

Photo credit: Christine Lentz (my lovely neighbor), Hudson, Wisconsin. 2/9/22.

NOTE: Since surgery, my spasticity is much more manageable.