Never Stop...Never Quit... ®: October 2024

Sunday, October 27, 2024

Approaching the Close of My First Journey

My Dear Friends,

October 1999 was a month of turbulence and turmoil like no other. The images of me on both ends bear little resemblance to each other. At September’s end, I had the firmness of purpose necessary to advance in my career as an attack helicopter pilot and Air Cavalry troop commander. By November 1, multiple sclerosis erupted, stripping everything I thought important from me.

My commemoration of this 25th anniversary has been a storytelling revisit of the day-by-day events that redefined me. If you haven’t seen the flood of video posts on my social media accounts, you can check them all out on my YouTube collection: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o. This includes the Century Ride bike MS event that took place in my garage on October 6. My worsening MS will probably keep you off the road, but it can’t dampen my determination

I’m pausing my daily chronicle until that November 1 medical climax to Act 1 of my journey. This week focuses on who multiple sclerosis shaped me into over the past quarter-century.

· Yesterday, I announced a permanent link to share free copies of my six published e-books. You can get them here: https://books.bookfunnel.com/neverstopneverquit.

· On Tuesday, I will participate as a patient ambassador for Helius Medical Technologies, manufacturer of the PoNS device I used to strengthen and improve my walking. The webcast will take place on Tuesday, October 9, from 3 to 4 PM (Pacific time). Here’s a link to the event: https://teams.microsoft.com/l/virtualevent/750668f1-dbf8-444c-969c-d3dbf90d5266@db9b84b1-be3a-48ac-8cac-c53b7a4b72b8.

· KATU News (ABC affiliate) will come to my house on Wednesday to conduct an interview. Their Everyday Heroes segment will honor Veterans Day by highlighting my military career, transition, and journey with multiple sclerosis. I will update everyone when the segment is aired.

· A slew of special announcements and promotions will scatter themselves throughout the week. Stay tuned for more…

All my efforts have a singular purpose–to overcome the debilitating effects of multiple sclerosis.

For those battling the disease, I want to demonstrate the paths we can forge to do much more than just survive. We can thrive! Physical, mental, and emotional programs are much more than therapy. They are our lifeline, ones that I need to support and promote.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

For our future, I want to make a positive sledgehammer impact in our efforts to defeat MS entirely. We will need to create a cure, for there is nothing right now that can completely halt, reverse, or even prevent multiple sclerosis. Creation efforts require talented researchers to research and develop treatments. To do that, I need to help raise the critical funding that will support these efforts as we make our way across the finish line.

YOU are one of the most essential pieces of this chain.

Everything I do comes back to my need to earn your valuable donations to support our fight. Your money will fund scientific research and development to create that cure. The massive array of programs needed to support and better those battling multiple sclerosis today require the donations I am asking from you today.

I will amplify my efforts to talk to talk as my body continues to walk the walk.

With my debilitation on full display, I will pursue our goal to create a world free of MS.

We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Donate here: https://NeverStopNeverQuit.com/donate

Donate direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Either way, 100% of the money you donate will go to our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

You can follow my story through blogs, videos, and social media posts. Everything is there for you to stay up-to-date or go back to the beginning.

My stories: https://NeverStopNeverQuit.blogspot.com

My videos: https://www.youtube.com/playlist?list=PLwMsWD-UtliW3mOlsFCYm46gE4ikkfa-o

My social media:

https://www.instagram.com/KevJByrne

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

https://linktr.ee/KevJByrne

Multiple sclerosis continues to decimate my body. Rehabilitation and training are a constant effort. It’s an informal contract between my body and me. I will delay the inevitable, using my time to help create that world free of MS our next generation deserves. Graphic displays telling my story are the best way I can raise awareness of our desperate need to find a cure.

Your support and donations are the critical next step in our fight to create a world free of MS. Please join us in 2024!

Love,

Kevin

Never Stop… Never Quit…

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…®

NeverStopNeverQuit.com

Tuesday, October 8, 2024

The Mental, Physical, and Emotional Limits of MS

My Dear Friends,

Today is an off day, a chance to rest and recover from an event that deserves the lofty designation “one like no other.” In my battle against the debilitating effects of multiple sclerosis, Sunday was a victory in every sense of the word.

The physical challenge was obvious: ride 100 miles on my recumbent trike, mounted to a trainer in my garage. There was no easy way out. With a stationary trainer, my tire stops spinning the moment I cease pedaling. There was no coasting or extended downhill ramp where I could rest and recoup before the next stretch.

My ride began at dawn, with temperatures clinging to 44°.

Rest stop #1 was at the 14-mile mark, just under an hour in. This is a typical break early into any extended ride, just enough time to warm up my body and machine, making any tweaks needed for the rest of the day.

Far from being just “any extended ride,” my setup was uniquely tailored to meet an odd assortment of needs. I skipped some standard bike gear, like a helmet, gloves, or glasses. My recumbent trike remained in the garage, mounted to the trainer. There was no need to steer and no risk of crashing–two big reasons I can’t be out on the road anymore. My trade-off for no wind whipping a cool breeze across my overheated body was not having to lather suntan lotion or worry about sunburn. My lost opportunity to enjoy stunning countryside scenery was offset by the chance to binge-watch TV and movies on my tablet! Beyond that, it’s a lot like every other extended ride. Long, lonely stretches of nothing but the sound of my spinning bike sprocket grinding in its metal-on-metal clash with the bike chain, and a persistent hum of the rear tire as it rotated approximately 76,500 times throughout the day.

The second rest was after 1:40 hours, another 22 miles. It was not so much a scheduled stop, but an emergency pee break! The quick hop-off/hop-on plan fell to the wayside when I stepped back into my garage to the sound of metal clatters and joyous cheers! Nine Oregon bike MS family members were under a pop-up tent in my driveway, decorated with motivational signs and a table full of treats. My first thought was, “How long was I in the bathroom?” They swore it was a quick setup (maybe I fell asleep there…). Support for me was the only reason for their loving efforts. I savored every moment, wishing to spend more time celebrating. Alas, those final 64 miles would wait no longer.

After being fueled by three of the donuts my friends brought and charged from the energy they lathered me with, the next 64 miles was a straight shot that took 4:06 hours. Actually, I rode 63.8 before I stopped to set up my last-mile promotional video and fundraising appeal: https://youtu.be/40SOTIaY_D0.

Sunday was not the first bike MS century ride run from my garage. Covid restrictions in 2020 forced my revamp that year. MS demanded the concession this time. While the rest of the Oregon Chapter rode two weeks prior, layered MS symptoms kept me sidelined. Second-degree burns on my feet, a result of hand spasms while carrying boiling water, were a temporary setback. The atrophy on my left side could be a permanent restriction from the open road. If 2025 is another garage ride, I may need to up my decoration game!

Ceremonial pomp and theatrics are always a part of organized bike events. Grueling rides where you gotta dig deep for those next few miles resurface every year with tedious regularity. We all signed up for that game when we bought our bikes. Bike MS is different. When I ride, there is always a reason that this year has a greater impact than the past. October 6, 2024, was the pinnacle of my rides, spanning five states since 2003. Twenty-five years prior, on October 6, 1999, I first faced the words “possible multiple sclerosis.”

Watch me when I shared my Day 0 story: https://youtu.be/j_ASrGFi5X4.

I had no idea what MS had in store for me, much like I have no idea what it will throw at me tomorrow. This is what I know.

Multiple sclerosis will not stop its ruthless assault on my body. It has made me an example of what it will take from people, how it will twist and distort their existence until few can remember who they were before they got sick. Multiple sclerosis will continue to turn me into someone who will lose until, either through lengthy erosion or by an epic tragedy, it takes my life.

I will savor every fight until that day comes. No, I will not win, but my voice, words, and example can help create a world where we have defeated MS. That world will only exist when we design the cures to prevent this disease and develop ways to overcome its debilitating effects. Those creations will only come from a laboratory through scientific research and development. R&D will only be successful if we find the initiatives.

YOUR DONATIONS are one of the most essential pieces of this chain.

YOUR DONATIONS will fund the necessary research and development to develop a cure.

I wish my body had the energy to call every supporter and articulate our needs. The plan for my life in the next year, five years, ten years from now will never take shape because the thought of what MS will do to me before that time is terrifying.

I’m glad my body had enough in to ride on Sunday. Now, I want to use my words:

- first priority is thanking those who have already supported through generous donations directly to the National MS Society or through NEVER STOP NEVER QUIT (100% of all money goes to the MS Society). I have a few ideas, and I think my token of appreciation will be memorable.

- next up are more stories from 1999, telling you how I first navigated through the darkness. As you read about every experience and every setback, please remember that someone is going through a similar experience right now for the first time. It will happen again tomorrow, the next day, and the next until we create the cure.

- I will take time to describe what it’s like living this way. Changes and setbacks are just a part of life for me—I don’t give them a second thought—but you may be surprised to see how MS dominates even the most mundane parts of life. All the while, please remember that I am not the only one stuck with this future. Our numbers continue to grow as more people develop MS every day.

Multiple sclerosis uses clever tricks to chip away at my body and take my ability to participate in the moments that I hold dear. In 2024, it tried yet again to take bike MS from me. On October 6, I fought back. There are no small victories in the fight against the debilitating effects of multiple sclerosis. Every victory is a cause for celebration! My wins will become rarer as this disease continues its onslaught, but I am going to savor each one.

My debilitation is on full display. I will continue to share the physical, mental, and emotional anguish through every medium possible. Think of my ramblings as frightening tales of adversity surrounding moments of sarcasm and levity, all sprinkled with a constant edge of determination. In whatever way you receive my tales, please keep in mind the single message: We need your donations and support to create the cure that will defeat MS before it destroys another generation.

Direct to the National MS Society: https://mssociety.donordrive.com/participant/Rogue

Through our charity: https://NeverStopNeverQuit.com/donate

Either way, 100% of the money you donate will go our fight (Rogue’s Bike MS campaign).

All donations are tax-deductible.

Thank you for your continued love and support!

Never Stop… Never Quit…

Kevin