Disease Progression VS Disuse Progression

When diagnosed with something progressive, healthcare professionals warn you about the bad stuff, while sugarcoating the message just enough to be encouraging. They want you to “prepare for the worst, yet hope for the best.” Your _______ (fill in the blank) diagnosis will either destroy you (so be prepared) or by some miracle everything will be fine (let’s hope for that, shall we?). This method used to make sense to me but after dealing with my disease for 11 years, I’m not sure this either/or scenario is the best approach anymore.

Ordering sushi at a gas station. Co-parenting with your narcissistic ex-husband. Using a 10-year-old condom you found at the bottom of the purse you once took clubbing. These choices absolutely fall under the “prepare for the worst yet hope for the best category.” But most life-defining moments are never handled in this way.

I don’t write “for your secret-bank-account-in-case-of-a-divorce” on the memo line of a check I’ve placed inside a wedding-themed greeting card.

I didn’t drop off a bottle of benzodiazepine pills and a straight-jacket after the birth of your child. Instead, I told you how skinny you looked in your maternity clothes (months after giving birth), said you and your partner were going to be kick-ass parents, “goochie-gooed” your little angel’s cheeks, and left behind a lasagna.

When life-changing events (good or bad) occur we encourage people to: Create a plan; Trust in their resilience as they navigate a new reality; and Change the plan as needed. Being diagnosed with a chronic condition is no different.

To date, my personal disease process has proceeded like this:

For three years, Multiple Sclerosis and I lived fairly well together. But once I experienced my first and only relapse in 2012, I watched my physical capabilities change. For the next four years I assumed my disease was progressing and whether on purpose or in response, my world began to shrink. Staying home and seated most days, by June of 2016 my daily step average was a mere 400 steps per day (except on the days I went to Target or Wegmans which allowed me to add extra steps safely from behind a wheeled shopping cart).

Then during the fall of 2016, I stumbled upon a video featuring a bracing system that allowed a woman with MS, who walked like me, to run. After months of tests, measurements, fabrications, and spending $7,000 I received my own Dynamic Bracing System (DBS) in January of 2017. This began another 6 months of brace tweaking, learning about gait-training, figuring out how to walk with a momentum-based brace on my leg, tracking down other users, finding the right cobbler, buying and returning pair after pair of shoes before I was functionally mobile again.

My gait wasn’t pretty. I wore the ugliest shoes on the planet. I wasn’t nimble and my balance was questionable. And although I still couldn’t walk outside of my home without a cane, I could walk pretty damn fast. In fact, by June of 2017, I was able to keep up with my able-bodied family and walk around Europe for a week. I walked 16,000 steps one day in Berlin! I even posted about it on Instagram. I am forever grateful for finding this brace. (You can read my multi-post series about my DBS Journey by clicking here.)

Sadly, my time with my DBS did not result in my running through a field of wildflowers while the Chariots of Fire theme played in the background. It did, however, begin a four-year-long increase in overall movement. The more I moved, the stronger I got. Eventually, I noticed changes when I wasn’t wearing my AFO. So one day I got cocky and pulled out my old, low-tech Elevate 360 Drop Foot Brace. Imagine my surprise when I noticed how much stronger and more stable my left leg had become.

Hmm…I’m supposed to get worse? Why was I seeing some improvement?

These changes gave me the confidence to try lighter, cheaper braces, and be open to adding more neurologically based therapies to my repertoire. Since 2018 when I started working with a Neurokinetic Therapy Chiropractor, I’ve noticed slow and steady improvements that carry over to the next day.

This makes me wonder… Were my past problems due to disease progression or disuse progression? Does my diagnosis alone make things worse or has my decline been due to the cumulative effect of misusing a variety of body parts and systems?

I think it’s both but with disuse not being given the respect and understanding it deserves. Over the past month, I’ve noticed improvements in a variety of areas: Balance; Gait; Strength; Range of Movement (ROM); Joint ROM; and Spasticity. Improvements that I will try to write about as I’m not 100% sure I understand what’s going on.

Stay tuned.

Featured Image by: Victor Forgacs via Unsplash

2 Comments Add yours

  1. The use or lose it concept is true. Having experienced similar things, albeit no motor skills issues, I know depression factors in as well. The more you can’t do something, the more depressed you become, later rinse repeat. Glad it’s worked out for you!


    1. LindaBP says:

      People look at me like I’m insane or naive. And yet, I’ve made many improvements in the past month alone. Definitely agree re: depression’s part in all of this. I think of all the times I blamed my body when actually I was not given the right information in the first place. Then I think about how healthcare refuses to give professionals any time to think, research, experiment, & educate themselves or their patients. What an insane system.


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