She Redefined My Reason to Fight

 

Only your child can upend the values and tenets you have embraced for years. Rogue accomplished this without a discussion. She never questioned my convictions, nor did she offer alternatives.

She stated a fact.

Never Stop… Never Quit…

In 1993, one observation seeded the passion in me to confront the merciless onslaught of my foe. It was six and a half years before I faced my first enemy—multiple sclerosis.

Another decade would go by before I wrote a blog for the Department of Veterans Affairs MS Center of Excellence. It was my second submission. Never Stop, Never Quit shared that fated story. Little did I know what would happen after 14 more years. My story became a mantra; my mantra became our charity. Everywhere I go, whatever I do, I see that calling. It’s written on plaques in my home, embroidered into T-shirts, and even tattooed on my arm.

With an indifference to the impact her words would have on my life’s endeavor, she ran a finger across the mantra and said, “It should say for them.” I asked why she thought change was appropriate, but she only shrugged. After thinking about her declaration, I asked who “for them” represented. With a simple, “I don’t know,” Rogue chastised me for even raising the question. I could see the conversation in her eyes.

It’s so obvious, why would I waste time trying to explain myself?

She was right. It was obvious the moment those words passed her lips; I just needed time to understand how her comment, and everything she didn’t need to say, rang true.

Why do I fight?

    To increase awareness of our needs.

Why?

    To raise money.

Why?

    To fund research and development of treatment options.

Why?

    To overcome, cure, reverse, or prevent the debilitating effects of multiple sclerosis.

Why?

    …for them.

Why else do I fight?

    To reach out and connect with others fighting against multiple sclerosis.

Why?

    To increase awareness of the options, research, and support available.

Why?

    …for them.

Fighting for no other reason than to fight, destroying something simply so it no longer exists, even donating just to donate are exercises in futility if no one will reap the benefits of our sacrifices.

It was, is, and will always be for them.

Rebranding may take some time.

 

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 we fight for them!

 

Never Stop… Never Quit…®

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

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…^®

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