Any Endurance Athletes?
 

Some of you might remember my story that was published in a Salt Lake City newspaper last month. Here's a link, in case you're not familiar with it: http://www.deseretnews.com/article/8...-stop-him.html

I just completed another Ragnar this past weekend up in Tahoe. I'm starting to pursue the thought of trying to put together an MG team to run a Ragnar Relay in support of MG Awareness. I know this will be a daunting challenge for many of us, but I think the reward will be well worth it, hopefully on both a personal and a bit more global of a level. Before ANYONE considers attempting this challenge, please consider your own abilities and your health. This is NOT for everyone. This is a 36-hour, 12-person, 200-mile relay race. There is an inherent risk in doing an event like this as a healthy person, and doing it with MG can make it downright dangerous. I'm not trying to scare anyone, I just want anyone who might consider doing it to really evaluate where you're at and what your capabilities are. There's obviously no guarantee come race day how each one of us will be doing, but we can't worry about what we can't control.

Here is my current plan so far. I have scoped out the races available that will occur mid to late next year. I've evaluated the courses, as best as possible (changes do occur), and the location that I think would best suit a group of us to attempt. After some careful consideration, I believe the Chicago race will be all-around the best. The dates are not set quite yet, but I'm expecting it to be somewhere around the first Friday/Saturday of June. Generally speaking, the course starts in Madison, WI, runs due east to Milwaukee, WI and continues due south, ending in Chicago. The course remains relatively flat throughout the race and there is only one short piece during the entire route that peaks over 1000ft (the highest point of the race is 1030ft). The first half of the race averages approximately 900ft, and the second half around 650ft, so there should be no elevation issues. Much of this race is run on a couple of trails, so we won't be competing with as much traffic or car exhaust.

I've e-mailed the race director for this race and am attempting to get Ragnar to donate a team to me. My goal is to make this a bit of a fundraising effort to support the MGFA. If I can get them to do that, my intent is to collect what would be the registration fee from each person, including myself, and put it towards the donation, as well as attempt us all to get additional donations from our friends, family, random strangers, casual acquaintances or through whatever legal means each person decides. If Ragnar won't donate, we can still do the race, I just won't be able to donate the registration fee side of it.

There will be other costs associated with the run that we would also have to cover. This would include your own personal transportation to and from your hometown and the race location, van rental, gas, pre-race and post-race hotel, food and supplies, team shirts (if we choose to do one), volunteers (if required and we are unable to fill, max of $30 per participant, more on this later). Not including the cost of airfare/transportation, the typical Ragnar usually costs me about $300-$400.

I'm also hoping to get some media attention from this. As long as Ragnar is okay with it (and obviously each participant), I'm hoping to try and pull some sort of media into it. I'm not too well-versed in this area, so I'm not sure how to best go about this, but I have some time to network and figure it out.

Finally, planning a Ragnar, especially in a "foreign" city, is very, very difficult and a logistical nightmare like you wouldn't believe. Coordinating the transportation of 12 people, coming from all across the country is tough. At some point, I will tell you where you need to be (if you're flying, what airport(s) to fly to/from) and when you need to be there (don't plan on arriving Friday morning, it won't work) for pre-race logistics and timing to work. This may mean you'll have to wait in an airport for a couple of hours either before or after the race. This will require you to relinquish a bit of control and trust me. I've captained several teams and the logistics have always worked out, but it requires careful coordination (and a few prayers that your flights don't get cancelled, lol).

Anyways, I've rambled on enough. If you think you're interested, let me know. Like I said, I'm not trying to scare anyone, I just want you to really evaluate if you think you can do this safely. If you have questions about it, want more information, anything, don't hesitate to leave a comment or message me. Hope we can get this going!

Hmmmm Wonder Where They Are All At ???
 

Adam,

Sorry you have not had a reply to your question. I am sure you understand how challening MG is physically to many MG'ers.

Does being able to WALK a MILE count?????

I used to be quite athletic, speed walker, tennis, golfer (wanna be), cycling, sailing, hiking, dancing and swimming..................

MG hit me in 2000 and these wonderful activities became history slowly but surely, and by 2004 I was unable to ACTIVELY engage in any of these activities. Ocular had progressed to general MG. Two myasthenic crises followed. :mad:

Today, I enjoy the above-mentioned activites vicariously, usually as an observer at an event and mostly on television.

Recently, but not often - when I am really blessed and MG is in control, (and an understanding skipper), and I have easy access to boat ropes (also known as lines) to hang on to - I have been able to enjoy an occasional sail boat outing as a "guest". Oh how I miss being a crew member !!!! Sailing uses soooooo many muscles!!!

HOWEVER, I have been on cellcept for about six months now.

Previous and current meds include mestinon (always and probably forever), prednisone (still), imuran (which was disasterous to my pancreas - and which, of course, I no longer take).

The cellcept has been WORKING.

Slowly I have been able to start walking more than just a block at a time. I am now able to walk a MILE at a time !!! Takes me about 30 - 35 minutes - and I use a walking cane (due to poor balance (I walk like a drunk) - and besides, it scares the dogs :D). I usually walk early in the morning, before the sun and heat arrive......

And you know what? I am so HAPPY that I am able to do this! At one point I was confined to a power chair and was unable to drive a car for almost a year!!!!


Hey !!

Any chance for a modified version of your "sports event" ??? :winky:

By the way, your story is amazing and encouraging !!

Good luck !!!!

p.s. I guess I don't qualify as an Endurance Athlete....That's O.K.
My family, friends, docs -and my cat- think I have endured quite a bit already (too much, actually) - in this Marathon called MG.

As have many other myasthenics........
:hug:

Oh I absolutely understand. That's one of the reasons why I've started this so early, because I know it's going to be a struggle to get MGers who are stable enough to do it. And even then, there's the inevitable risk associated with doing an event like this, and only the individual can decide whether that risk is worth it or not. At the moment, I actually have 8 or 9 people interested, which was easier than I originally expected, so I only have a couple more to round out the team for now! :)