2025 Bike MS – A Watershed Year

Ten years from now, we will look back on this year with amazement over what came next.

Yellow entries in my online calendar categorize key moments and other significant events in my life. I smile when the annual reminder pops up on my smartphone every November 23; this year will be the 32nd anniversary of my first solo helicopter flight. Random entries serve as reminders of events that affected my life. I started writing …in abeyance on July 7, 2017, first shared the phrase “Never Stop… Never Quit…” on April 30, 2008, and spent my last Army day in uniform on August 21, 2000.

Rather than boring you with an exhaustive list of emotional moments, I’ll share my entry for September 23, 2025. It will read “2025 Bike MS – A Watershed Year” with a link to this blog post.

My report on the events building up to and throughout this year’s Bike MS will try to explain how our fight against the debilitating effects of multiple sclerosis exploded into fantastic waves of successes.

This momentum needs your support for our 2025 fundraising campaign.

Please donate to support our fight.

Direct to our Bike MS campaign: https://mssociety.donordrive.com/participant/Rogue

Other ways to donate (100% of the money goes to our Bike MS campaign. I pay all administrative costs): https://NeverStopNeverQuit.com/Donate

This is my story…

“I need to do something different” is a phrase that crosses my lips more often than you might expect. My initial thoughts on planning and preparing for this year’s Bike MS shifted the word “different” to “better,” then to “memorable.” Adjectives replaced one after another until they dropped off. “I need to do something” became more appropriate as my body continued to fail me. I was taking a shower after a morning workout and reached down for the shampoo bottle on the floor. I placed a few pumps into my left hand before grabbing the wrist with my right and raising it to my hair. Most of it smeared onto my scalp before the arm dropped; my right took over and finished the task.

Washing your hair is one of 99,000 tasks you never think twice about until some part of your body stops working. My left arm, hand, and fingers… My left leg and toes… How much have I lost? I can’t even begin to give you a percentage since I don’t remember what the baseline felt like. Showering, dressing, and basic grooming are suddenly luxuries that require constant struggle. Cooking and laundry, if completed without mishaps, introduce more challenges with eating and dressing. Mishaps over the past year have led to cracked ribs, scalding burns, and many bloodied injuries. Every time, I cleaned the mess while trying to downplay the issue with sarcasm.

I tried not to focus on the question, “What’s next?” Whatever it is, it will keep getting worse.

I tried not to focus on the question, “How bad would it get?” I knew the answer, even though I still could not imagine it.

Be assured, my head was not in the sand. I knew it was bad. I know it is going to get worse. Those simple facts did nothing but strengthen my resolve that I will Never Stop… I will Never Quit… I will do it for them.

Yesterday

My goal for Bike MS 2025 was to make the event fun and celebrate every moment of this fight.

Normally a two-day event, my Bike MS lasted a week-plus. I shared my story of last Sunday with “The Aftermath of Bike MS.” The fact that I rode my recumbent trike, strapped to a trainer in my garage, a hundred miles on a (very) slight incline setting, was my cause for celebration. Only once, at the end of the night, did my leg give out and buckle under the weight of my body. It took another four days before I felt recovered. During that time, it was okay to slow, crawl, cry, and curse, but there was never a thought that I would stop or quit. Never, so there is no reason to dwell on the difficulties my body endured.

My priorities shifted to getting my garage back in order and taking notes on how this event can be even more over-the-top next year. By late Thursday, it was like it never happened. Bike MS is usually underway on the Friday of event weekend. That was when I used to travel down to the site to prepare for my early morning start time. This year was different. With the 2025 victory under my belt, Jamie and I celebrated at the Billy Idol and Joan Jett concert! Hours of walking and standing made me feel almost (gasp) normal. That feeling has crept up a few times in the past month, but it’s still something I have not been used to for a long time.

We made it to McMinnville on Saturday to share the celebration with our Bike MS community. That’s exactly what I did. I celebrated. Past years produced dozens, even hundreds, of pictures and videos. I put my iPhone away this year and soaked in the festivities. This is the only picture I took at the event.

I needed one picture with my friend Kim. She and I worked together back in Pittsburgh from 2000-03. Kim comes out here to ride and celebrate with family; they’re spread all over the US. The reason it was so important for me to have this picture is that Kim is the reason I ride with the National MS Society and fight to raise money and awareness in our campaign to defeat MS. When she was diagnosed, I had four years of MS under my belt already. For me, it was a silent shame I tried to ignore with my focus on work, alcohol, and a laundry list of self-destructive behaviors. After four years, I finally knew someone else with MS. It became personal. It became something I wanted to defeat. For the rest of the time, there was no reason to waste it by staring at my device, so I put it away and celebrated with my friends. We laughed and hugged. We cheered on riders as they crossed the finish line. We ate and drank, then laughed some more. That celebration was my favorite moment of 2025 Bike MS!

Smiles of excitement and the energy of motivation are the valuable reminders I’m left with.

Today

Awareness and support are the only two things that matter.

Awareness: videos and stories highlight my resolve to Never Stop… Never Quit… for them. The damage inflicted by multiple sclerosis is evident every time you watch me try to do something. It’s important to me that my donors, supporters, loved ones, and others fighting this disease see my resolve.

Support: I want people to witness what MS has done to my body, so that it inspires them to provide the help needed for others fighting alongside me and the others who have yet to endure this burden. I don’t have many skills, so the best way I can contribute is by raising awareness and the money needed for research, development, therapies, and physical/mental support programs.

As I pedaled and pedaled to nowhere, looking around the garage, my mind began to wander. “How can I make this bigger and flashier next year?” Ooooooh, the ideas continue to flood my brain, each new one better than the last!

What’s already in the works

Branding my fight beyond words and videos started with creating stores through Amazon.com and Printify. I want the items to speak for themselves, so take a look at https://buyneverstopneverquit.blogspot.com or https://neverstopneverquit.printify.me. Please browse through my online catalogs. If you see something you like, please make a purchase. If you’d like to see something else, drop me a line and let’s chat.

Awareness: Every time someone wears our clothing or displays our swag, they become a walking billboard for our message!

Support: On top of that, 100% of the royalties earned from these sales go directly to NEVER STOP NEVER QUIT. If you want to see something else, shoot me a message and we can design it.

My hastily designed setup needs a lot of work. The good thing is we have time and will dedicate energy toward creating the items that will generate excitement.

Tomorrow

Much of what I wrap up in my thoughts about today has to do with “what’s next.” There is no separator between tomorrow and today. My MS will get worse tomorrow, but it is already declining. I will take steps to raise support and awareness tomorrow, but they are already underway now. I look forward to the challenge. Please follow my adventure as I prepare for and celebrate Bike MS 2026!

Thank you for the motivation and support.

With love,

Kevin

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight for them!

 

Never Stop… Never Quit…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

The Aftermath of Bike MS

Please donate to support our fight.

Direct to our Bike MS campaign: https://mssociety.donordrive.com/participant/Rogue

Other ways to donate (100% of the money goes to our Bike MS campaign. I pay all administrative costs): https://NeverStopNeverQuit.com/Donate

When I woke in the morning and tried to roll over, everything hurt. Pain, numbness, and tingling were an indistinguishable blend of reminders that my disease would never stop. Nor would I, so I fought my way out of bed to see if the day’s issues would improve with activity or if I was just going to have to live with them. I aborted my first attempt to stand when that sense of vertigo threatened to send me falling forward. Every reminder of my challenges with balance, every time I fall and smack my head onto the ground (like I did the day before), is my MS blaring its declaration of how it will never quit. Nor will I, so I took a moment to get my bearings. I stood tall on the third try.

“It’s going to be a long day,” was the only thing muttered before I dressed and shuffled into the kitchen. That was Saturday. One cup of coffee later, I made my way outside and started pedaling for 2025’s Bike MS–Kevin’s Version.

On Sunday, my morning routine of ailments was pretty much the same, with the added twist of having ridden 100 miles in my garage.

BEFORE

2024 was an emotional year, capped with my garage-bound century ride. Oregon Bike MS was a couple of weeks prior, but I waited until October 6. The date marked my 25th anniversary of leaving a Korean hospital with a report that included the words 다발성 경화증 가능성. The English translation read “possible multiple sclerosis.” I shared stories of the week leading up to and the following month. My posts were emotional, not particularly jovial, but they got the point across in the only way I knew how.

This year is lighthearted and festive! Yes, I will continue to pepper my report with the harsh reality of multiple sclerosis. It has to be this way because everything in my life reeks of MS.

2025 started with Garage Dayz t-shirts.

I’m not going to lie. Seeing long-time friends post pictures of themselves wearing a t-shirt with my image on it was pretty cool (in a surreal way). Sitting in a bar, enjoying some post-ride beer and food with Jamie, friends, and family, was even more bizarre. We were all wearing shirts or hats sporting my Garage Dayz image, as well as Rogue’s and my Never Stop… Never Quit… For them handwriting! Here’s a recommendation: if you get the opportunity to sell people apparel emblazoned with your picture and handwriting, do it. It’s cool. The fact that 100% of the money earned from the sale of those items goes to our fight is even better.

DURING

I pedaled for 7:34 over the course of 9 hours. As my recumbent trike trainer crossed the virtual finish line, a part of me wanted to keep going. Every joint in my body hurt, but I knew the pain would spike when I stopped and tried to stand. Of course, the pain would get worse if I kept cranking away. And that is a perfect recap of my fight.

If I stop, I’m going to suffer. If I quit, I’m going to endure setbacks.

But…

If I keep going, I’m still going to languish in the pain of multiple sclerosis. It will probably get worse. But…

The only way to overcome the devastating effects of multiple sclerosis is if I Never Stop… Never Quit…, For them.

This ride was by far the greatest challenge of my 23-year Bike MS history. My mindset, however, was the most significant change. My 2025 goal is to spotlight Bike MS as a pure celebration of everything I stand for in this fight. And so, the rest of this report (the rest of this entire season) will be highlights of how and why I am celebrating. My MS will interrupt with stories of the pain and damage it yields, just like it does throughout every day, but my resilience will keep splashing that shit-eating grin on my face and into my words.

At 5:55 AM, the trek started in (almost) pitch black. I say ‘almost’ because my 2025 setup included multicolor lights flashing from my Super Bass Jobsite Speaker paired with my iPad. Motivational music, movies, and random TV shows kept me entertained throughout the day. My straight, slight incline was not a bike ride through the lonely, winding roads of Western Oregon. This scene was cush, with a garage full of motivation and mementos. Old bike MS jerseys hanging next to various fitness equipment and bikes; mementos from my Army days, including my D Troop 1-6 Calvary guidon, my old SPH-4 flight helmet, and the black powder pistol from one of my three consecutive years as Top Gun with 3-229th Aviation (Attack).

The garage floor was lined with purple shag carpeting, leftover from Rogue’s room renovation. Old walkers and canes rested next to signature wine bottle cases. Scattered around the bike were bottles of water, an emergency kit (thankfully, not needed), and fans to keep the garage from getting too stale. I got off my bike once at the 42-mile mark. It is slow and painful to climb in and out of my recumbent (not to mention dangerous), so I just stayed there for the other three breaks. Good thing I had my trusty pee bottle used to help manage my multiple-diverticula-damaged bladder! Blaring music, a dystopian assortment of random “stuff” strewn around an already cluttered garage, with the mix of a hundred miles of sweat and pee breaks wafting through the air. I think next year I’ll sell tickets to the event…

I needed every distraction. In hindsight, I could have used more. There’s a normal level of MS pain every day. Muscles that don’t work the way they used to, or work at all, but still throb with reminders of their uselessness. Other muscles have to compensate, which puts a strain on them as they pull joints in unintended directions. Damage from past falls left me with permanently torn ligaments and muscles. My fall the afternoon before the bike ride left me with a throbbing head, swollen elbow, and bruised ribs.

That level of pain was my starting point. The dysfunctional muscles were pulled and stretched against their will. The good ones carried two or three times the effort of my ride. Joints without the correct layout of ligaments and muscles cracked in ways joints should not crack, especially not for 7:34 hours. My head hurt. My ribs hurt. My elbow felt okay!

The best part was the fact that the grin I mentioned earlier (the shit-eating one) never left my face. My ride was nothing but a celebration of the fact that we are getting closer to finding a cure for this wretched disease. Plus, I had donuts! My motivation was so high throughout the day that I wasn’t hungry at all. But, did I mention the donuts? You don’t need to be hungry to eat donuts. Three delicious glazed treats from Sesame Donuts!

AFTER

And that was Bike MS–Kevin’s version. From around 6 AM to 3:15 in the afternoon, I smiled through 100 miles of painful pedaling. I texted with Rogue, talked on the phone with my mom, and had a visit with Jamie. I watched the new Superman movie (meh) and rocked out to tunes. I posted the few videos I recorded to social media (they are now on my YouTube channel under the 2025 Garage Dayz playlist). And of course I had donuts. Not a bad way to spend your Saturday morning, huh?

When the energy of the ride ended, all the MS pain rushed back. It took about 25 minutes to get off my recumbent trike. My left ankle, the one with muscle loss and damage, swelled to about twice its size when I finally was able to remove the bike shoe. It hurt even to touch, let alone try to stand and put weight on it. In some awkward acrobatic move, I managed to lift my body out of the bike and over the right tire. Please don’t tell Jamie or my mom (they will get mad I did not mention it), but I crawled back into my house and stretched out on the floor for about 10 minutes. Finally able to stand on my other leg, I somehow managed to get into the bathroom and into a hot shower. When circulation finally returned, the swelling dropped off almost completely. By the time Jamie arrived, I could put weight on it. Remember, shhhh! Keep that part a secret.

Showered, cleaned up, and over 8 pounds lighter, we headed out in our concert t-shirt swag for our post-ride celebration. I said a little thanks in silence that I didn’t fall getting in or out of my recumbent. As much as I am used to falling, it still hurts.

Every movement on Sunday was slow. Tired muscles had turned to soreness, and aching joints had become painful. I decided that cleaning up in my garage could wait until after brunch with Jamie’s family, and then grocery shopping. That grin remained on my face the entire time.

At night, when I sat at my computer to start writing, cleanup became less of a concern…

NEXT

It’s Monday morning. I was up until midnight writing my story, jarred awake at 4 AM by a flood of words I wanted to add and changes I needed to make.

Slow, but not as slow as yesterday. Painful and sore, but less so today. I tried to recount the number of times I had been cautioned over the past week.

“Just be careful. Don’t overdo it.” – I overdid it.

“If it gets to be too much, just stop.” – It got to be too much. I kept writing.

“I don’t know why you put yourself through that.” – That’s a longer story!

Why do I ride? The short answer is because I can.

The longer answer is because it’s one of the things I can still do. I can’t run. I can’t jump. I can’t ride a bicycle. I can’t even ride my recumbent trike out on the street. I used to be left-handed, but it really doesn’t work anymore. I can’t snap my fingers. I can clap. I can’t lift my arm over my head. I can’t button my shirt. I can’t hold a piece of food and cut it with a knife. I can’t lift a glass of water to my lips. I don’t have enough control and coordination to consider myself right-handed, but I switched a handful of those skills to the other side. If it requires two hands, I probably can’t do it. What I can do, I embrace with as much grit as possible. I plop my body down in the safety of my garage and pedal at a hard, constant pace until the measuring stick says I can stop. I sit at my computer and share my story into a microphone that transcribes the words for me. The next infection I battle could make everything worse. The next fall, accident, or other injury might raise my debilitation to a whole new level. If I don’t face that challenge, secondary progressive multiple sclerosis will continue to chip away at my form and function. When I can no longer do those things, I will figure out another way to do those things. That’s the first reason I ride. For me.

There are countless people globally who can’t do those things either. Many of them cannot do what I still can, even with the strange modifications I need. Some can’t stand; others can’t walk. Physical injuries will lead to more mobility impairments. Infections will compound current issues and create new problems. For too many, the trauma will blacken any hope they had for their future, creating another elevated suicide statistic in the MS population. Warriors in our community have told me how Never Stop… Never Quit… gives them hope, encouraging the same incessant push I share in my stories, videos, and posts. That’s the second reason I ride. For them.

Money. Donations. Pure and simple. If I never realized another improvement in my progressive debilitation, if I never received another bit of inspiring feedback, yet everyone I ever connected with donated what they could in support of our fight, I won. Donations will drive the funding necessary to develop treatments that improve the lives of those living with MS. The money funneled into research on candidates like tolebrutinib, a drug for treating non-relapsing secondary progressive multiple sclerosis (that’s me). Tolebrutinib has demonstrated a significant delay in disability progression. The FDA is scheduled to make an approval decision by September 28. There are dozens of other drugs under active research and development. The National MS Society provides funding and oversight to scientists, academic medical centers, and researchers. The goal to better the lives of those living with MS is merely a slice of the objectives the NMSS has in their overall vision of a world free of MS. Developing treatments in the lab alongside functional rehabilitative programs in our communities will improve lives until we find the secrets to halting progression, regaining what has been lost, and eventually preventing future onsets of multiple sclerosis. Two years ago, I spoke at the Oregon Bike MS program after Day 1 of riding. I admitted that I will never see a world free of MS because of the damage already done to my body. Rogue’s memories of my suffering mean that, even if we cure the disease tomorrow, she will never know a world free of MS because it is a part of her life. But I hope that she will look upon the child born without fear of developing this disease, who has never watched someone wither away after years of incessant suffering. They will live their lives in joyful bliss. That’s the third reason I ride. For them.

Like I said, lighthearted and festive.

Now, it’s time for me to focus on recovering my body so I can join my friends in McMinnville this Saturday and celebrate another fantastic event!

Thank you for the motivation and support.

With love,

Kevin

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight for them!

 

Never Stop… Never Quit…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

 

Save the Date

First published March 1, 2022, revised May 27, 2025.

I will continue to update as the event comes closer.

There is a wave of frustration and anger (and sometimes violence) directed at insurance companies these days, fed up policyholders pushing back against suspect practices. I choose a different response to their methods.

A Party of the Ages!

When: Saturday, February 5, 2033

Place and Time: TBD

 

Dear Standard Insurance Company (all executives and employees),

Please save the date for my event: “Celebration of Tomorrow and Plan for an Exciting Future.”

Why February 2033?

My story begins on February 23, 2022, when one of your Senior Disability Benefits Analysts presented me with an offer regarding my long-term disability claim. He flattered me by taking a moment “to offer an opportunity to settle your claim in exchange for a lump-sum payment.”

It’s every little boy’s dream to be chosen for such an honored opportunity, especially since “The Standard does not routinely settle LTD claims for a number of reasons.” I won’t lie; I was tickled pink.

Unfortunately, after several rounds of misleading calculations and not-so-veiled threats, like “we know that you write books” and “if you do not accept the offer, you will still have to regularly validate your ongoing disability (to prevent fraud),” I still could not understand how you came to the lump-sum dollar amount presented. My math skills are usually on point, making this discrepancy all the more puzzling. I said it was wrong — he said it was right, showing me “the full three pages of the present value calculation you received.”

I thanked him, then showed him again, this time in detail, how his calculations were wrong.

And the Truth Shall Set You Free!

Your determined analyst persevered, taking my question regarding the deductible income adjustment to your actuarial department.

Imagine his surprise when the little scrapper discovered there was another variable not included in “the full three pages of the present value calculation!” Forget trying to imagine my surprise; I was not taken aback.

Apparently, “the present value calculation process incorporates actuarial mortality assumptions.”

So, since your team did so much hard work and determined the correct mortality assumptions for an individual living on disability with multiple sclerosis, I figured I would take the baton and do some more of that math I love so much.

By the calculation of your actuarial department, discounting for the time value of money, my life expectancy maxes out at 93 additional months. I will be dead sometime before the end of January 2033, never seeing the ripe old age of 62.

Let’s Just Pretend

I know your employees are smart, but please humor me for just a moment. What if I am that oddity who exceeds the medical expectations of Standard Insurance Company’s actuarial department?

That would be nice. I definitely want to celebrate such a milestone.

Therefore, please save the date. When the reaper’s stopwatch bottoms out on January 31, 2033, if I’m still here, I would like to celebrate with all my dear family, friends, and advocates at The Standard. Advanced planning like this may not be enough to clear everyone’s schedule on a Tuesday, so let’s push it to that Saturday: February 5, 2033.

There will be food, drinks, music, and lots of enthusiasm. I may even enjoy a piece of cake!

Every penny from my long-term disability after January 31, 2033, will go to a very public celebration of the fact that I am still thriving, not just because of my desire to Never Stop… Never Quit…, but thanks to the avalanche of support so many provide in our fight against the debilitating effects of multiple sclerosis.

In the Meantime

I have lots of party planning to do. Thank goodness it’s not for another 94 months. Formal invitations will follow as we get closer to the event.

In the meantime, here’s some wonderful reading for your actuarial department about the life expectancy of individuals living with multiple sclerosis. The National Institutes of Health, National Institute on Neurological Disorders and Stroke — Wow! Say that five times fast with a mouthful of crackers — published it in 2020, with recent revisions.

“Multiple Sclerosis”

https://www.ninds.nih.gov/health-information/disorders/multiple-sclerosis

What is Multiple Sclerosis?

Multiple sclerosis (MS) is a chronic neurological disorder. It is an autoimmune disorder, meaning that in MS the immune system—which normally protects us from viruses, bacteria, and other threats—mistakenly attacks healthy cells. MS symptoms usually begin in young adults, between the ages of 20 and 40. 

MS affects people differently. A small number of people with MS will have mild symptoms with little disability, whereas others will experience worsening symptoms that will lead to increased disability over time. Most people with MS have short periods of symptoms that resolve fully or partially after they appear. These periods are followed by long stretches without noticeable symptoms. Most people with MS have a normal life expectancy.

Yes, I will milk this for all it is worth, starting with “Save the Date” t-shirts: https://www.amazon.com/dp/B0FC7ZH4H3

Get yours today!

I endure enough challenges to deal with daily, so please don’t stack the deck against me more.

Please consider this my official decline of your opportunity.

On the off chance I am dead before February 2033, please extend my “Nice Job” to your actuarial department. But that’s not going to happen.

I hope you’ll still come to my party!

Kevin

 

This is not about what my life will be like when my fight is over.

I will never stop…

I will never quit…

I will do this for them.

Never Stop… Never Quit…^®

***

Please consider supporting NEVER STOP NEVER QUIT.

DONATE HERE

100% of your donation will go to our fight. We pay the cost of managing our foundation.

All donations are tax deductible to the extent allowed by law. You will receive a receipt.

 

Episode 02 – I’m Afraid of the Dark

 

How to Thrive with this Disability

Episode 02 – I’m Afraid of the Dark

Watch my video: https://youtu.be/pyiWShBJTIk

Bullshit and rambling have no place in this recommendation, so I’ll be short and to the point.

Fumbling around in the dark, walking in a room without lights, is a recipe for disaster. My balance issues take concentration to overcome. There are three aspects to balance: visual (what you can see), vestibular (the three fluid-failed canals of your inner ear), and proprioceptive (movements and pressures on your body). I have one functioning sensory input, what I can see.

I don’t attempt to walk around in the dark. If I wake up in the middle of the night, there’s a light close to my bed. One command, “Alexa, night light on,” and I can see. Every room in my house as a light I can turn on using my voice.

In this day of insane technology, smart devices, and AI-assistance, I use mine to turn the lights on. It has a few other values, like controlling my music and cooking timers, but I speak to my Alexa device countless times a day to turn the lights on and off.

Use technology to your advantage.

If you don’t want to invest in too much, here are some low-cost ways to keep yourself safe:

Amazon Echo Pop (newest model): $39.99 (you can get a cheaper or use Rakuten to find a rebate).

Smart Plug: $18.99/4-pack (there are tons of options out there, this is what I use).

Don’t let MS leave you in the dark…

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

 

Never Stop… Never Quit…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Episode 01 – No Longer a Game of Inches

How to Thrive with this Disability

Episode 01 – No Longer a Game of Inches

Watch my video: https://youtu.be/s0J-IRA966g

My fight against the devastating effects of multiple sclerosis is now a game of millimeters, 1.2 mm to be exact! Let me get to the point without too much rambling.

The difficulty in raising the front part of my left foot led to walking difficulties. Increased falls are a constant danger. My poor gait (the pattern my limbs move when I walk) created further problems, placing awkward strains on my joints and spine. Avalanches of issues began to put everyday living at risk. Hip and knee problems developed. I now have moderate scoliosis (sideways curvature of the spine).

This change began around 2012.

Foot drop was one of the first noticeable symptoms when I began to develop secondary progressive multiple sclerosis (SPMS). This issue predated the rest of the atrophy on my left side. Trips and falls became common occurrences before any formal SPMS diagnosis. Blah, blah, blah…I underwent multiple treatment and brace options before settling on the ankle foot orthosis (AFO).

The concept is simple. A semi-rigid carbon fiber medical device system sits under your foot, preventing it from angling down when your leg raises. Not perfect, but better!

Unrelated symptoms pop up in my life with multiple sclerosis on a regular/constant basis. Aches and pains become the effect without a direct correctable cause. Joint issues, scoliosis, you name it, they’re all there. That’s just life with multiple sclerosis. In the Army, we would say, “Suck it up and drive on.” So, I do.

Eleven years after finally receiving my first AFO, frustration over this off-balanced sensation got me thinking. My left leg feels longer. It feels longer because it is. 1.2 mm longer, to be exact. It’s called LLD, for Limb Length Discrepancy. According to the National Children’s Hospital webpage “Limb Length Discrepancy (LLD),” evaluation and treatment options should be considered “when the difference measures more than 1.5 to 2.0 centimeters.”

I have no medical training, and no medical professional ever raised this issue, but the 1.2 mm discrepancy caused by my AFO is the source of pain and imbalance in my gait. It is not the only source, but a significant cause. This is my personal diagnosis and opinion. At some point, I will review everything with a physical therapist or my doctor.

I purchased this Carbon Fiber Insole and slipped it into my right shoe. The change was instantaneous! I felt as if my balance footing was restored. My hip hurts less. I noticed a reduction in the times I catch my foot on the ground or swing it outward as I step. Increased confidence in my gait for the last four days is a welcomed reprieve from ever-worsening multiple sclerosis issues. Improvements are always welcome!! Combined with the benefits I received through my PoNS device therapy last year, I’ve pulled something back.

Take that, MS.

Here’s a link to the Carbon Fiber Insole I purchased: https://www.amazon.com/dp/B0BYNSN2Z9. Well worth every penny.

This is one thing that helps me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

 

Never Stop… Never Quit…^®

Follow, Shop, or Donate Today: https://NeverStopNeverQuit.com

Episode 00 – Thinking out Loud

How to Thrive with this Disability

Episode 00 – Thinking out Loud

Watch my video: https://youtu.be/a83O_Nym99Q

Think of a time when you were doing one of the thousands of mundane tasks that get you through the day. Walking to check the mail. Writing an email. How about just getting out of bed in the middle of the night to go to the bathroom? Performing these tasks can be so routine that half the time you’re probably thinking about something else, just letting your mind drift away. Describing how you do them would probably qualify as the most monumentally boring part of any conversation.

There’s no such concept as monumentally boring when I do anything. With multiple sclerosis, if a task is not difficult to impossible, it is painful. If it doesn’t hurt now, I’m walking a razor’s edge on further injury to myself, someone else, or causing a whole crap load of damage.

Nevertheless, I continue to live. Some days, I even thrive. Like the old saying goes: Never Stop… Never Quit…!

After bike MS this year, when I was sending out my fundraising after action report emails, a longtime friend offered one of the greatest compliments. “I don’t know how you do it, KB.”

I get that on occasion. Sometimes, it’s a compliment (“I don’t know how you do it! That’s awesome!”). Other times, it’s a question (“I don’t know how you do it. Can you show me?”).

Living with a disability is a constant game of trying to trick the system to give me a bit of advantage. Take some time to share a few of my favorites with you. Helpful hints, useful gadgets, crafty tricks, they’ll come in all shapes and sizes. Whether obvious or crafty, these are the things that help me make it through the day with a smile on my face (as opposed to a frustrated, injured scowl).

I will write up a little blog post like this and recorded video to demonstrate.

Questions about something you want me to discuss? Recommendations or ideas for a new post? Drop me a DM on my social media or leave a comment.

These are things that help me live and get through this so I can celebrate the miracle of countless tomorrows. I want you to be there with me as well. We are in this fight together!

Because it is a fight.

The fight is not over and it won’t be over until a cure is found.

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

 

Never Stop… Never Quit…^®

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