Preparing For My First BikeMS

In anticipation of our first year participating in BikeMS, here are some things I did to get ready.

To get ready for the ride, I still have quite a bit of training and conditioning to do. Not being a seasoned athlete, I realize that I need to be careful in how I approach getting ready. Here are some of the tips and strategies I’ve learned along the way.

• Get the right fit. For comfort, safety, and efficiency, your bike needs to fit your body and be adjusted to reduce physical stress and maximize the strength of your efforts. Go to a local bike shop for expert advice.
• Set realistic goals. Since I can’t already ride 30+ miles, I need to build up to that distance. I’m keeping track of my rides with a free phone app (e.g., Strava, MapMyRide) and attempt to increase my average ride by one to three miles each week.
  
• Schedule rest. Although it is tempting to think that riding every day will be the best way to prepare, it’s the wrong way to build strength and endurance. Rest days are necessary to allow your body to repair muscle and begin to compensate for the increased physical demand. TrainingPeaks, a free resource for Bike MS participants, emphasizes recovery days and the need for varied levels of workout intensities.
  
• Enjoy variety. It’s important not to do the same things every time you go out on the bike. Some training days should feature greater physical demands — increased elevation gain or sprints, for example — or easier, low-intensity spins that keep you moving but don’t wear you out. I like to alternate trails that present different challenges or easier sections.
• Focus on hydration and nutrition. It’s vital to stay hydrated before, during, and after workouts. The amount of water and enhanced sports drinks you may need depend upon your body, the environment, and your workout demands. The National MS Society offers basic information on hydration and nutrition to get you started.

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BikeMS: Setting Goals and Going the Distance

Birkie Skiers for Cures and the National MS Society in Wisconsin

As most of you know, I write for HealthCentral.com. In fact, I write for three of their disease-specific websites: MultipleSclerosisCentral, MyRACentral, and MyObesityConnection. In the process, I work with three individual great producers.

Last weekend one of my producers was in Wisconsin participating in the legendary cross country skiing race called the American Birkebeiner. "It’s this crazy long, crazy hard race through the north woods of Wisconsin on nothing but two pieces of fiber glasss," says Sara.

After she returned from the race, she tells me that a good friend of hers was diagnosed with MS a few years ago. Since then she has skied in her friend's honor through Birkie Skiers for Cures and the National Multiple Sclerosis Society.

"This year, I was skiing for you, too! Here’s a pic of me at the end…all smiles!"

Can I just say - WOW!! Nobody has skiied, walked, or biked for me before. Well, except those piano student families who walked WITH me that first year at the MS Walk in 2006. I guess that counts. ;o)

I'm a bit surprised at how touched I was by Sara telling me this. So touched that I didn't know how to respond at first and I just now answered her email.

Last week I visited the HealthCentral main office here in Arlington, VA to give my MS producer some short videos I had taped. They will be posted throughout the month of March and the 1st one made it up on the site yesterday. Here's the 2nd video and post regarding "getting diagnosed with MS." Next week, several of us are telling our diagnosis stories.

While I was at the office, I got to meet face-to-face each of the lovely persons I currently work with and have previously worked for. It's nice to put a face to the person on the other side of the keyboard and computer screen.

This just reinforces that there are real people behind the blogs and screennames. Real people who do great things. I hope that I will always one of those approachable folks who are "real" in discussing their lives and their diseases. Seriously, how can you be anything but honest when talking about MS or RA or even obesity.

It might take me awhile to answer emails (read above) but I do try to respond. Remember, though, that I do have two diseases which can make the brain a bit foggy. If I don't respond, please feel free to email again.

So here's to MS Education & Awareness Month in the United States. I am now aware of the Birkie Skiers for Cures which sounds like a great organization and bunch of folks who have fun while raising money for good causes. This year the National MS Society got hooked up. Go NMSS!!

MS Research and Funding in the US

In the United States, we have several non-profit MS-related organizations involved with conducting research, supporting research, or raising funds for research. Of course, we are not the only ones worldwide conducting research into the treatment and possible cure of MS, but since HealthCentral is based in the U.S., I thought we’d start here at home.

National Multiple Sclerosis Society

Without a doubt, the National MS Society (NMSS) has the largest budget when it comes to funding MS research among non-government not-for-profit organizations, devoting nearly $50 million each year to a spectrum of key initiatives and projects. In 2007, the National MS Society established Fast Forward, a wholly owned subsidiary of the Society with an innovative business approach, to speed the development of treatments and seek a cure for people living with MS by:

* Accelerating commercial development of innovative MS research
* Funding MS drug discovery in biotechnology and pharmaceutical companies
* Ensuring a global perspective in identifying funding opportunities

Myelin Repair Foundation

The Myelin Repair Foundation (MRF) was created in 2004 to address the systemic problems in medical research and commercial drug development that work against the rapid delivery of patient treatments. The MRF’s Accelerated Research Collaboration™ (ARC™) model is a radical new process that recognizes the incentives and limitations of academic scientists, commercial biopharma, government regulators, and patients and their families, and fosters behavioral changes by adding tangible value to everyone.

Today, the MRF is the world’s largest research organization with a singular focus on understanding how myelin is formed, damaged in MS, and repaired. MRF supports a collaboration of pre-selected scientists who have agreed to jointly develop and conduct experiments that will lead to targeted myelin repair discoveries. MRF shares its revolutionary research model with other disease research organizations, enabling rapid discovery of treatments and cures for other diseases.

Nancy Davis Foundation for Multiple Sclerosis

Founded in 1993, the Nancy Davis Foundation for Multiple Sclerosis (NDFMS) is dedicated to the treatment and ultimate cure of MS. Funding research is the core focus of the Foundation and all funds raised support the Center Without Walls program, a selected network of the nation’s top seven MS research centers. This nationwide collaboration of physicians, scientists and clinicians are on the cutting-edge of innovative research programs and therapeutic approaches to eradicate MS.

The Centers work as a team constantly communicating, never duplicating. It was the goal of Nancy Davis to build a winning team and the Foundation sought out the best and the brightest MS research facilities throughout the world. It is the hope of her Foundation that in addition to combating MS through research in a clinical environment, that an increased awareness will be created by educating the public about this devastating disease.

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Funding MS Research: National MS Society, Myelin Repair Foundation, Nancy Davis Foundation, Montel

P.S. Yes, Justine, I think that another post on organizational spending would be appropriate after each group has completed their 2008 990 tax forms.

Human Chain to Raise Funds for MS Patients

On February 1, 2009, a group of caregivers of multiple sclerosis patients and members of the regional MS Society chapter will form a human chain with the aim to create awareness and raise funds for the treatment and rehabilitation of MS patients.

Multiple sclerosis is an expensive disease and many patients cannot afford the cost of treatment. An all too common experience for many MS patients.

With just a handful of patients a few years ago, the city today has around 200 people afflicted with MS, a chronic progressive disease of the central nervous system. Of these, only a few can afford treatment as it costs as much as Rs one lakh a month.

Costs what?

Rs-1 lakh = 100,000 Indian Rupees = approximately $2050 USD in today’s exchange

What else could one buy with Rs-1 lakh in India? Well...

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News Headline: Human Chain to Raise Funds for MS Patients