What is the MS 365 Project?

The MS 365 Project is a celebration of my 20th year with Multiple Sclerosis and the active lifestyle that I have used in my fight against MS. This year long project will hopefully raise money for the Can Do MS organization and raise awareness of how strenuous activity can help in the fight against MS.

Thursday, January 27, 2011

Light me up

photo by Brapke (a)artwork

While I don't know if I am taking a supplement that has the light-emitting jellyfish protein or a placebo, I am feeling different. I just started noticing that I am remembering to do little tasks that people ask me to do without any mental effort on my part. I normally spend a great deal of mental time trying to remember things, either keeping it in my active memory, "Don't forget x. Don't forget x." over and over again, or "There was something I was supposed to do..." I often found myself apologizing to people for having completely forgotten to do what they had asked me to do. I don't like being undependable and not being able to remember things is a pretty big thing in the dependability department.

So when I remembered to do a small task that my wife had mentioned for me to do, and not just remembered, but remembered it easily and without effort, I took note.  If this stuff works, I'm all for it.

Grad school has kicked into gear, a new teaching semester has started and the bike shop is continuing with the normal stresses of running a small business in these difficult economic times. Having a clear head that isn't filled with fog is a nice change of pace through this. But a supplement alone isn't the magic answer. 

People I work with think that I ride my bike to school every day as some sort of green-ecostatement kind of thing. No one can fathom that it is exercise. I see teachers eating garbage food, working a stressful job, getting little exercise and gaining weight surely and steadily. Coworkers who don't know me very well are flabbergasted the first time they see me eat lunch, often commenting,"I didn't think you really ate that much!" I try to explain to them that by riding my bike 4 miles to school in the sub 20 degree morning, I probably burned more calories than they will burn all day, but that usually isn't the end of it.

Nothing beats having a tough and stressful day melt away on the ride home. Riding is stress release, exercise, and a workout of my nervous system that I am convinced does more to keep my MS almost completely in remission than anything else. I wouldn't mind some warmer weather though...

Wednesday, January 19, 2011

Ratcheting up

It's the time of year when lots of obligations and responsibilities ramp up in my life. As a teacher, the end of the semester is the time for state standardized tests, which this time around has been punctuated by school cancellations and delays due to snow and ice.  As a grad student, the new semester is upon me and I am finding out the projects and assignments that I will need to successfully accomplish this time around.  As a small business owner, the economic climate of our small town does not give any sense of comfort or predictability.  Of utmost importance is my wife and son.  It is imperative that I not let other responsibilities take away from my most important role as a father and husband.

It is a juggling act that is easy sometimes and incredibly difficult at others. Daily exercise helps ease the effects of stress, but it always lurks. The hardest part of it all is simply remembering what I should be doing, what I need to do, and about a million other things that I need to keep track of.  My memory- especially my short term memory, is getting worse and worse.  I'm trying to develop habits that help to counteract the effects of this cognitive deterioration, but I haven't struck a natural workflow that I can rely on.  Online calendars/to do lists, paper notebooks, paper calendars - none of these things has become habitual.

I've started a trial supplement study for Apoqueorin, a chemical derived from light-emitting jellyfish.  I don't know if I am taking the true supplement or a placebo this first go round, but I will definitely get the supplement in the second round trial.  Apoqueorin is being tested as a supplement to aid in cognition, fatigue and sleep quality in MS patients. It will be interesting to see if this has any effect on my personal cognitive issues.

What are your solutions to keeping track of your busy life?

Tuesday, January 11, 2011

Dancing in the snow

Good on ya, Lenoir! The greenway got lots of snow visits.

 We got a heavy snowfall for this area, yesterday.  Fine, fat, fluffy flakes dropped lazily throughout the day, ultimately accumulating into about 6 inches or so of very nice powder on the ground.

Our roads were blanketed with snow and few people were out traveling.  School was closed, so Golden and I had a day off from teaching.  We decided to close the bike shop to discourage people from driving unnecessarily. And so I found myself with an opportunity to go do a bike ride in the snow.

Temperatures were brisk; never getting much above the upper 20's.  I decided to stay close to home (and warmth), so I thought it would be fun to go do a 'cross bike ride on the greenway.  Jack Brown decided to join me and off we went, late in the afternoon.

Jack Brown - he slid around but didn't fall down!
The roads had been plowed, which around here means that some asphalt may peek out of expanses of snowy powder punctuated with large areas of compacted snow that is better described as corrugated ice.  We rode along, each of us on two skinny knobby tires, constantly watching for ice and always shifting balance to remain upright and moving forward.

Gotta dress for success
We hit the greenway and found a carpet of white powder with a few footsteps in it.  We immediately accelerated, riding fast with the satisfying crunch-squeak of new fallen snow under our tires.  Snow can be amazingly deceptive.  Here in 6 inches of fresh powder our tires gripped with the sureness of velcro.  Where people before us had walked, there was a compaction tending towards ice that led to wariness on our part, but no actual problems, either.

As the temperature dropped, we noticed a bit more sliding, but the icy layer was under the powder and looked no different from anything else we rode on.

Traction was much better than you would think.
Riding on snow is a bit of a dance.  You ride lightly, keeping your body loose.  As you feel the bike shift in the snow and ice, you move yourself around to maintain your balance, but always subtly and slightly.  Huge, sudden movements are bad.  You can anticipate some of the more obvious potential dangers like the large icy patches that develop at stop signs and stop light from people spinning their wheels when they stomp the accelerator to put their car in motion.  But you can't anticipate them all.  You have to be open to shifting conditions and react to the best of your ability without overdoing it.  Over correction is just as bad as not doing anything at all.

Riding in the snow, you cut a new path for yourself, anticipate big problems, adjust for the myriad small problems that are thrown at you, all while constantly and thrillingly moving forward.  There aren't too many things that are better than that.

Friday, January 7, 2011

MS Trek IV: The Search for Doc

I'm trying to find a new neurologist.  This has never been an easy task for me since my first neurologist was such a great person to work with as an MS patient.  But I can no longer drive the 3+ hours to see him and get the adequate doctor-patient relationship that a person with MS needs.

My solve for this has been to try going to see recommended neurologists in my area, but that has not been a good experience.  I have had neurologists tell me they don't like dealing with MS patients because we ask too many questions.  I have had neurologists do a follow up visit with me after the initial visit (where they did the cursory neuro tests) and tell me what they think the next step of my treatment should be while never once looking up from the stack of charts (that are other patient's) and look at me during the conversation.

So, I am now looking for a neurologist in Charlotte which is about an hour and a half drive from here.  This leads me to think about what I am looking for in a neurologist.  I am not looking for a neurologist to take charge of my MS life and provide me with all the answers.  What I do want is someone who looks at me as a partner in my fight against MS.  I want a corner man.  I'm the one who has to get in the ring and go toe to toe with MS, but I need someone who can offer advice and wisdom when the round ends.  I need someone who understands that my ultimate goal is to win not survive.

What successes and failures have you had in finding a neurologist?  What qualities do you value in a neurologist?  How did you find a neurologist that you are happy with?  These are the questions I would love to hear answers to, since I have no interaction with anyone with MS.  I know I'm not alone in this quest to find a good neurologist, so sharing your thoughts with me is most appreciated.

Tuesday, January 4, 2011

First weekend down and now into the work week

Mileage check at the end of the weekend's last road ride.
 I wanted to get out ahead of my total mileage goal from the beginning of this project.  It just doesn't seem like much to ride an average of 10 miles a day, everyday.  These kinds of things can get away from you, though.  So, after a weekend of riding I'm please to say I've got 70 miles in the books.

Owen unloading his bike.
I got back from a road ride Sunday morning and Owen was running around the house like a 4 year old who had been cooped up for too long.  We ate some lunch while Golden finished up some lesson planning and as we were eating, the skies brightened and the sun came out.  The temperatures rose and while I was showering off the road grime, Owen decided that we needed to go do a bike ride on the greenway.

 So, we loaded up the bikes and took off for a little 3 mile rip around the greenway.  The dogs came with us and eventually ended up with their leashes secured to the baskets of my commuter bike, running along the greenway with their tongues flapping in the breeze as Owen set the pace and sang songs at the top of his lungs.
A little weather check before the morning commute.
Alas, the temperatures did not hold from Sunday and so the Monday morning commute was the cold, dark affair that it has been for a while now.  But that glorious Sunday afternoon is hopefully a reminder of what will soon come...

Saturday, January 1, 2011


 35.71 miles of fog and mist on roads that have been covered in salt and sand from the recent snows was a fun way to start out the new year.  With temperatures in the 40's, it never felt as warm as the thermometer would have you believe it should be.  But on we went alternating between a talking pace (read sedate) to an OMG-I'm-cold pace (read NOT sedate).
Golden and I at the end of the ride; soaked and cold.
It was a fun ride, especially in retrospect.  Considering that I rode 60 miles yesterday, 30 miles on Thursday and 40 miles the day before that, I felt pretty good.  There was that sore feeling in the legs but it didn't seem to have any effect on how much effort I could make.
This is what happens when road grime flies in your face the whole ride!
Did you get out and do something today?