This is the 4th Post about my DBS Journey. You can read about my earlier progress via Post 1, Post 2 and Post 3.
It’s been almost 4 months since I began using my dynamic bracing system to improve my gait. Apparently, it takes more than 15 weeks to reverse a 5-year physical decline which means…
Shit’s getting serious.
Gone are the quick and dirty, “Look I can stand up longer,” or “Holy cow, guess how many steps I’m walking now?” success moments. Now every new gain (no matter how small) that my body experiences must be integrated before another gain reveals itself to me. If I rush it, my body reacts badly.
- The first time I walked a mile without stopping to sit, my back went out and kept me sidelined for a week.
- The first time I walked 10,000 steps in one day, the excruciating joint pain that followed almost kept me from climbing the steps in my home safely.
- The Sensory Motor Amnesia pain that accompanies the stretching of a usually contracted muscle is no fun. It’s taken my myofascial therapist months to get my muscles to stay relaxed.
Because of this, I’m happily learning the joy of acceptance and patience.
Instead, the Universe told me to, “Stop whining, shut the hell up and learn to roll with the waves of health and healing, crazy lady“.
In other words, I need to rethink what healing is supposed to look like.
This means learning the importance of celebrating seemingly small accomplishments.
In the past I used to stay home and limp, on average, about 500 steps total throughout the day. Unless I went to the grocery store my step count was horrific. Now I can definitely hit the traditional 10,000 steps goal without a lot of pain or stiffness, which is awesome.
But on the days when I’m not running errands, I need to take 3 separate walks to meet that goal. After a recent week of numerous long car rides, seated computer tasks, and other non-physical chores I was frustrated when I wasn’t hitting my goal. But when I really looked at my numbers I noticed that the days I don’t take the time to hit a treadmill still involve my taking about 3000 steps. In other words, my current sedentary days are 6 times more active than they were 4 months ago.
That deserves to be celebrated.
Another big moment was when I successfully carried a 5lb bag of potatoes across the Wegman’s parking lot without using a cane or pushing a cart. Everyone else saw a chick with a goofy smile walking to her car with spuds. I, however, heard the Rocky theme song in my head as I looked around and wondered, “Do these people know how freaking awesome I am?”
If you’re in shape, the ability to perform a half squat requires very little effort.
Today I squatted ½ way towards the floor without my quad giving out or my knee buckling. I haven’t done that in about 3 years. In other words, I heard the Rocky theme song again.
Last week when I performed a timed walk down the hallway of my P.A.’s office I learned that non-MS people walk the same length in about 4-6 seconds depending on age and health. My initial time, pre-DBS and without a cane was 14 seconds. Then I received my DBS and got the time down to 13 seconds. I added Ampyra to my medication regimen and a month later, the time decreased to 12 seconds. Then out of curiosity, I asked her to time me with my walking stick and I was able to traverse her corridor in 10.5 seconds! An almost 4-second decrease in time is something she’s never seen before.
Finally! Someone that could acknowledge and verify my new super powers! She was as excited as I was and for the first time, we had something positive to discuss instead of the normal documentation of my progressively, decreasing abilities.
So that’s where I stand now. Still walking with a limp. Still needing to think about every damn step as I go. Still feeling better when I walk with a cane or a hiking pole. But walking faster and farther and with a gait pattern more similar to my pre-MS days.
Other gains although unnoticeable to many are ones that I feel in my body. My weak leg is more internally rotated during the gait cycle. I can now activate my left quadricep and calf muscles and even go up onto my left toes for a second. I feel new sensations throughout my weaker leg side and during myofascial treatments enjoy the impulse throughout the hour to flex my left, dropped foot.
Although my health and functional movement are improving it’s not a linear process. It’s a circular endeavor that takes more time to reveal itself to me. When I give myself the time to integrate the change, it seems to be sticking around long term which is something I haven’t experienced since the summer of 2008.
17 Comments Add yours
Yay you! So happy to read your update. Imagine 🙂 So very happy for you…
Thanks so much! I hope we can go birding soon. Let me know when you have time.
So wordpress cut out “Imagine Rocky theme and Super Woman image”
Love this insight on healing.
Thanks so much for reading and posting. 🙂
Reblogged this on portfoliolongo and commented:
I’ve never reblogged anything, so I hope I’m doing it right. Why am I reblogging this post? I’m doing it in the names of learning and inspiration for the few special people who follow my illustroblog.
Check out my niece’s blog as she literally learns how to walk again as a writer, an adult, a person living with MS. If you’re like me, you’ll learn something about your path and how you make your way on your journey more gracefully. She’ll crack you up too; that’s kinda’ a family thing.
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Thanks, Uncle Paul! Love you!
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You are a very good writer. It’s truly a gift!! You are working so hard. Hard work is easy when the results are immediate. Your hard work is so admirable because it’s not instant and perfect results. Your perspective is fascinating. I strive to have it. To be able to take a step back in really, really tough situations and see good. I try to live like that and that is how I try to raise my kids. I have some people in my life that aren’t facing challenges and can’t see any good. I don’t know how to deal with those people. It’s hard to be around them. You are on the complete other end of that spectrum. It’s amazing. You are amazing. Love you!
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Thanks, sweetie. Luckily for you and everyone else, I don’t blog more frequently or you’d witness all the days when I’m super negative and angry about all of this. 🙂 Actually, that’s a good idea for a future post just to keep it real. But yes, I’m trying desperately to see the big picture and focus on the long game, not the short game. Hope this message finds you well. I think of you often. Hope life for you, Ryan and the kids is awesome. Love you!
You ARE freaking awesome! Miss you.
Thanks so much! I don’t recognize your email though. Who is this?
I am SO freakin proud of you! Celebrate EVERY success and know that sometimes before you make forward progress you have to back up a little to have enough room to thrust!!! You go girl – you inspire me!!!
Thanks, friend. I really appreciate the support. Hope to be up for a visit this summer.
Still consider you my favorite yoga instructor. Glad you are doing well!
Wow – thanks so much Chrissy! Hope you’re doing great as well.