Friday, January 27, 2012

Adjustments, Concessions and Embracing the New (aka, “My Bicycle”) Part II

I remember my blog entry from July 2010.  It was a reflection of the adjustments and concessions I have faced in my fight with Multiple Sclerosis and of my struggle to learn to ride a new bike.  My recumbent bike.

I have learned a lot in the past year and a half.  I learned that I can push my body past the limits MS once placed on me.  I learned that if I keep working on my strength, stamina, balance and coordination, those areas will continue to improve.  So I focused on these skills, just as I continue to focus on my overall wellness.  By the time July 2011 came around, I was 50 pounds lighter and in the best physical condition since my diagnosis in 1999.  In July, I climbed Mount Rainier and ran a challenging 10K obstacle course.  Both times my MS kept fighting me.  There were limits on how high or how fast I could push myself; regardless, I kept ‘raising the bar’.  At the end of the month, my MS reminded me it was still fighting for control: its grip on my balance won over on, of all places, a roller skating rink!
It will never stop…
It will never quit…

It was a long recovery from a broken leg and the resulting surgery.  That recovery gave me a lot of time to consider the need to embrace the “new”.  I’ve gained a lot in the last few years.  My health, strength and stamina are strong but my balance and coordination have indeed continued to degrade.  It takes something significant to drive that point home sometimes.  I pushed my limits on Mt. Rainier, the obstacle course and the roller rink much like I push my limits every time I ride my recumbent bike: falling a lot but always getting back up and moving on.
It will never stop…nor will we
It will never quit…nor will we

So how do I keep pushing with my limitation now fully exposed?  Much like before, it’s with adjustments, Concessions and Embracing the New.
  1.  I can’t safely climb mountains anymore, but I can still push myself on trails and hills below the snow & ice.
  2.  I can’t safely run the full obstacle course, but I can still run the route hard and just bypass certain tricky obstacles.
  3.  I can’t safely roller skate.  OK, we’ll just leave that one alone!  40 year old men, especially those with MS, have no business on roller skates anyway.
  4.  What do I do when I can’t safely ride my bicycle anymore?

After a lot of research, test rides and pondering, I am making the move to a recumbent trike.

A tricycle?  Really?

The last time I owned a tricycle I was Eleanor’s age!  Am I really regressing so far back that I need to ride a tricycle?

Kind of….but not really.  There won’t be handlebar streamers on this one.  The name will even be more ‘grown up’.  Not a tricycle, but a recumbent trike!

With my trike, I can push myself physically without having the burden of balance to weigh me down.  I figure if I can’t beat my MS, then I will just pass it by.

The next time that you see me on the road I will be riding my new recumbent trike.  I am already training hard to develop my ‘bent leg muscles – the hamstring, abdominal, quad and glut muscles that need to be strong to ride hard.  My legs are strong but I am not fully back from my broken leg.  Plus, this is different riding because of the new muscle groups required to ride a trike.  Training will be hard but motivation will carry me through.  I will be the guy passing other riders on that steep hill climb! 
My MS can’t stop me now.

Multiple Sclerosis has taken a lot away from me.  It has caused me to adjust my lifestyle and make certain concessions based on my limitations.  What my MS has never taken away from me is my motivation to embrace new challenges and opportunities.  My new recumbent trike is my new opportunity to live my mantra.
It will never stop…nor will we
It will never quit…nor will we
This is why we ride!

What’s the only way that a 40 year old man rides a tricycle?  By riding hard at the front of the pack!

Kevin Byrne - Portland, OR

Tuesday, January 24, 2012


How many new words do you learn these days?  For me, the answer is “more than I ever wanted to”.

Our daughter, Eleanor, is almost 2-years old.  Developmental experts say she is learning about 10 new words per day.  Neat words like puppy, graham cracker and all the lyrics to the song ‘The Wheels on the Bus’ (go round and round…round and round…).

I turned 40 recently.  I’m not quite sure how many new words I am supposed to learn these days.  What I do know is that the words I have been forced to learn are not as fun as Eleanor’s puppy or graham cracker.

Multiple Sclerosis
Those were the first tough words I had to learn after my diagnosis back in 1999.  With that came a flurry of overwhelming words.
Relapsing Remitting, Magnetic Resonance Imaging, Interferon, Lumbar Puncture
What is the best way to deal with these scary tongue-twisters?  Make it easy by giving them catchy abbreviations and nicknames.
MS, RR, MRI, Avonex, Spinal Tap

So I learned my new vocabulary.  I took my medication.  I visited the doctor a lot.  Life went on…

Over the past year, however, I have been forced to learn a slew of new scary words (and their associated nicknames):
Optic Neuritis (ON), Afferent Pupillary Defect (APD), Natalizumab (Tysabri), Progressive Multifocal Leukoencephalopathy (PML), Fingolimod (Gilenya)

Something very unnerving happened at some point in the game.  As my MS continued to impact everything that I did, those catchy abbreviations and nicknames went away.  I was faced with just the words in raw terms:
Intramedullary Rod, Anaphylactic shock, Bradycardia

New medications offered little comfort in the face of these new ailments:
Prednisone, Sulfamethoxazole/Trimethoprim, Cephalexin, Clindamycin, Doxycycline Hyclate, Capsaicin, Lidocaine, Zolpidem Tartrate, Meperidine, Propofol, Oxycodone, Oxycodone/Acetaminophen
It’s hard to find solace in a treatment if you can’t pronounce its name, let alone define how it works.

Lucky Eleanor…
Sometimes I long for the days of puppies & graham crackers!
Kevin Byrne - Portland, OR