Wednesday, August 6, 2014

What could we do with $43,000?

Beautiful weather, great friends, and a gorgeous scenic route set the stage for my 12th year participating in the National MS Society’s BikeMS.  My successes and struggles throughout this weekend’s event leave me pondering one simple question: what could we do with $43,000?

$43,000 funds the average research grant.  One of those grants holds the keys to my future and our goal of a world free of MS.  That is our driving focus and the reason for my 2014 fundraising goal.  This year’s ride is finished, but the fight still goes on.  Before I can celebrate, thank all of our sponsors, and rest, my charge is to show you the value of raising $43,000 and what we can do with it.  Your donation to will help me meet and exceed that goal.

This story is about what is means to me……

That was then, this is now
It has been 15 years now since I first heard those words "You have MS".  Like many others, my course has been a daily struggle with pain and damaging effects throughout my body.   My Army Aviation days are long past, but until recently I was able to recover from setbacks and rehabilitate through my limitations.  Just a few years ago, I climbed mountains (Rainier, Hood, and St. Helens), rode STP (Seattle-to-Portland bike event), and ran 10k Mud Run obstacle courses.  My MS was under control.  
For years, I was stable thanks to the disease-modifying agents developed through prior research and development.  There are 10 FDA-approved disease-modifying agents for many people with relapsing forms of MS.  That research gave me life, and it continues to benefit hundreds of thousands of people struggling with this disease. 

Today, I’ve lost some that stability and control.  My condition is now classified as Secondary Progressive MS (SPMS); the disease will begin to progress steadily without any specific noted relapses, just a continual decline.  There are days when I am unable to raise a fork and feed myself, button a shirt, or even take my puppy for a walk (Monte! does not like those days).

There are currently no approved treatments available for SPMS. 

Never Stop…Never Quit…
Fighting back is the only option.  I am participating in a 2-year clinical trial that will look to stem the progression of my MS.  This is a random, double-blind study.  That means there is only a 50/50 chance I am receiving the treatment rather than just a placebo.  If I am, then the challenge now shifts to the success of this clinical trial.  There are dozens of studies under way for the various form of Multiple Sclerosis.  Grants fund research fellows who lead the studies that precede these clinical trials.  Somewhere in this research is the treatment for my MS.  Until we find the treatment, I will fight in the only ways that I can.

This is why I ride!
First and foremost, riding gives my body the chance it needs to fight back.  MS-related issues have severely diminishes my balance, muscular coordination and strength.  My hiking/climbing days are limited to struggles of limited adventures (read about my most recent Angel’s Rest trek).  My biking was also revised, from 2 wheels to 3; another concession I was forced to make back in 2012.  I continue to power on; there is no other choice.

As BikeMS arrived, I made my way to Monmouth, Oregon on Friday unsure of what my body could do.  Only two days prior I was in the hospital for evaluation of current ailments.  Illness had stressed my immune and nervous systems, further wreaking havoc on my body.  The only hopes I had were a reprieve from further issues, then maybe a boost of energy.  My answer came in that euphoric high I can only experience from the energy and excitement of BikeMS!  33 other riders joined me on Team Amulet this year, about 600 riders in total ready for two days of riding, resting, and celebrating our collective goal: to create a world free of MS!

We rested and celebrated in style!  It’s always great to spend BikeMS weekend with family and friends!  Coworkers from 13 years ago as well as today, fellow alumni from West Point, neighbors, members of our MS community, and random friends (old and new) all joined Brie, Eleanor, and me as close-knit family.  For Brie and me, this is our favorite holiday of the year (Eleanor would probably vote for Christmas…).  Seeing my other MS friends were both my favorite moments and the hardest parts of the weekend.  I would enjoy the excitement of one’s improved mobility and function, then moments later sharing in the sadness we all experience with every example of further debilitation.  There’s not a soul at this event that will rest easy until the devastating effects of MS are a distant memory for all.  The money that we raise goes towards the caring for those with MS today, as well the research to find a way to prevent new MS cases tomorrow.

When the time finally came, I rode.  For the moment I am no longer a member of the century club (100 miles on Day 1).  Instead, I had to settle for the shorter routes on both days (33 and 35 miles).  The most noticeable issue this year was the loss of strength and coordination in my left leg.  The muscles just don’t stretch and pull like they should; the ligaments don’t stabilize my ankle and knee.  Simply riding my trike was an awkward and difficult task, requiring every advantage I could give myself.  So I strapped my ankle down, immobilizing the weakened joint, and lifted my leg to clip in to the pedal.  That’s where it stayed, strapped into my trike until the routes were completed each day.  I’m fortunate that the rest of my body is strong enough to push me through these ailments.  Throughout the weekend, that was my constant reminder to do whatever it takes to maintain conditioning.  Until we win, my body needs to be prepared for the constant challenges MS will continue to throw at me.

The weekend was a huge success!  Yet again, I rode and affirmed my vow to not let MS win this fight.  Every friend there celebrated my victory with just as much elation, for they knew my struggles.  Without their motivation and support, fighting would be next to impossible.  I also had the opportunity to savor the victories of my friends, as well as sharing in their loss and pain.

The weekend was over all too soon as Brie and I returned home Sunday afternoon.  Monday morning, I was back at the hospital for more testing.  I still don’t have any answers or treatments for my latest round of issues.

My resolve to overcome this disease is strong as ever. 

This is why I write, fundraise, and fight!
BikeMS is a rallying point; a single event for our MS community to focus our support, awareness, and fundraising.  For the rest of the year, however, MS remains a struggle in our daily lives.  For me, there are better days and there are more difficult days.  Unfortunately for me, ‘more difficult days’ have been the prevailing norm for the last few years.  My response is to fight, and I will continue to fight until we finally live in a world free of MS.

25 years ago I was taught a lesson that reigns true today more than ever, that the “Want To” needed for a fight is not about winning… that’s the end objective.  Having “Want To” is about absolutely everything that’s required before we win; to endure and persevere in the face of unyielding opposition.  The message of “Want To” is about truly living my mantra of Never Stop… Never Quit…  My “Want To” involves raising the money needed for research and support.

In 2010, I was asked to write a blog story for the Department of Veterans Affairs’ MS Center of Excellence.  Four years later, that blog site, along with NeverStopNeverQuit, are continued sources of motivation and strength for me, as well as many others living with MS.  It’s one of many outlets to fight.  For my family and me, writing down my thoughts, hopes, and fears helps us understand and focus on what matters.  I’m assured when I am told my words help others in this fight.  No one should ever have to feel alone; fighting MS is tough enough.  Your donations help ensure that no one ever has to fight MS alone.

In 11 years, Brie and I raised nearly $176,000 in our fight against MS.  For 2014, our goal is at least $43,000.  The money we continue to raise goes to funding that next research grant and so far beyond.  Standard MS-related costs include:
  • $50 -  Round-trip taxi ride to medical appointment
  • $100 - Walker or Shower Chair
  • $250 - Transport Chair; Round-trip wheelchair ride to medical appointment or Portable Ramp
  • $500 - Help fund a college scholarship for a high school senior with MS or 24 hours of Respite Services for a caregiver
  • $1,000 - Hospital Bed; 1/2 of a standard chair lift; utility or rental assistance to two members\
  • $43,000 - Funds that research grant (average cost)

For MS patients, the average annual cost of treatment drugs is $30,000; 20 – 30% of that cost is often not covered by insurance.  No one should ever have costs limit their treatment options; fighting MS is tough enough.

What’s next?
The future of my MS is unknown.  Regardless of this clinical trial’s success, my resolution is firm.  I will continue to ride, write, fundraise, and fight.  With my family and friends supporting me, I will continue to fight and prepare my body and spirit for whatever happens next.  I will support all my other friends fighting this disease so they are never alone and I will fight for the research that will lead to the day when no other person ever has to hear the words, “You have MS”. 

That’s what $43,000 means to me!

For more than 2.3 million people worldwide, every day is a fight.  This fight is not over until a cure if found.
It will never stop….nor will we
It will never quit….nor will we
This is why we fight!

Please support our fight by donating today: