The "Los Angeles Times" runs an article indicating that patients with multiple sclerosis may experience worsened cognitive function in warm weather. Read the article here.
The Australian National University researches the idea that people who spend more time in the sun are less likely to develop MS due to increased vitamin D levels. Read the article here.
A study from Wayne State University works with tagged t cells to determine a cause and effect relationship for relapses. This study was published in the January 2011 Journal of Neuroimmunology.
"Multiple Sclerosis Drug Tysabri Linked to 10 More Brain Infection Cases." Tysabri is diagnosed to treat MS and moderate to severe Crohn's Disease. Read the article here.
Whitlow's on Wilson Bar & Grill will donate 15% of proceeds to the National Multiple Sclerosis Society on Tuesday, March 1. More details here.
Monday, February 28, 2011
Sunday, February 27, 2011
19 miles
The first year I walked in Challenge Walk, I walked most of the way with a woman named Sarah.* The mother of two, Sarah has MS. We started off around the same pace and fell into step (and conversation) with each other easily. As a first year walker, I didn't know any of the other participants, and Sarah was incredibly easy to speak with and eager for conversation. We stopped every few miles for snacks and bathroom breaks, but the day was pretty uneventful. Until we were just a few miles from the overnight location. Sarah was starting to feel a little tired, and so she was thinking of hitching a ride with a SAG (Support And Gear) vehicle for the end of the day. I wanted to keep walking, and so we decided to part ways. But before we did, she said something that stuck with me.
"My goal today was just to walk the first three miles. Instead I walked 19. And I wouldn't have been able to do it without you helping me along."
I didn't think I had done anything out of the ordinary, but just having me there had really made a difference for Sarah. It helped her push herself on for 19 miles when she had fully expected to only be able to walk three. And I realized something: for me, yes, Challenge Walk is about raising funds and awareness, but mostly it is about being there. By just walking, we are sending a clear message that people living with MS are not alone. We are there to help them on their journey, and we are happy to do so.
This picture was taken during the Candlelight Ceremony during my first Challenge Walk. Each candle represents someone's connection to multiple sclerosis. This is why I walk. Because while "MS stops people from moving, the National Multiple Sclerosis Society exists to make sure it doesn't." I walk so that other people can continue to do so. I walk so someone else can walk 19 miles instead of three.
*Out of respect to the individuals I have met through my efforts, I am using only first names in this blog.
"My goal today was just to walk the first three miles. Instead I walked 19. And I wouldn't have been able to do it without you helping me along."
I didn't think I had done anything out of the ordinary, but just having me there had really made a difference for Sarah. It helped her push herself on for 19 miles when she had fully expected to only be able to walk three. And I realized something: for me, yes, Challenge Walk is about raising funds and awareness, but mostly it is about being there. By just walking, we are sending a clear message that people living with MS are not alone. We are there to help them on their journey, and we are happy to do so.
*Out of respect to the individuals I have met through my efforts, I am using only first names in this blog.
Saturday, February 26, 2011
What is Multiple Sclerosis?
DISCLAIMER: I am not a doctor, nor in the medical field. My knowledge of MS comes from various websites, articles, and personal recollections of my grandmother's disease.
According to the Wikipedia article on the disease, multiple sclerosis (MS) is an autoimmune disease in which the myelin sheaths surrounding the axons of your nerves are attacked and damaged by your own body. This causes the sheathes to scar over (giving the disease its name) and lose their ability to conduct nerve impulses along the axons. Once these nerves are unable to transmit nerve signals, a person can experience any number of symptoms, and the disease often leads to both physical and cognitive damage.
There are four courses of MS that are generally recognized: relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing.
According to the Wikipedia article on the disease, multiple sclerosis (MS) is an autoimmune disease in which the myelin sheaths surrounding the axons of your nerves are attacked and damaged by your own body. This causes the sheathes to scar over (giving the disease its name) and lose their ability to conduct nerve impulses along the axons. Once these nerves are unable to transmit nerve signals, a person can experience any number of symptoms, and the disease often leads to both physical and cognitive damage.
There are four courses of MS that are generally recognized: relapsing-remitting, primary-progressive, secondary-progressive, and progressive-relapsing.
- Relapsing-remitting is the most prevalent course of MS. This is characterized by defined acute episodes, between which a nearly full recovery is made. At least 85% of MS cases at least begin as relapsing remitting.
- Primary-progressive MS accounts for about 10% of MS cases. In this course, disability progresses from the onset of the disease, without the acute attacks or recovery periods present in relapsing-remitting MS. Due to diagnostic criteria for primary-progessive MS, it is often not diagnosed until an individual is living with significant symptoms.
- Secondary-progressive MS is essentially a relapsing-remitting course of MS that shifts into a course that steadily progresses, but without the acute attacks. According to some studies, about 50% of cases beginning as relapsing-remitting will become secondary-progressive within 10 years, and 90% will shift within 25 years.
- Progressive-relapsing MS is the least common course of the disease, affecting around 5% of patients. This course is characterized by a steady progression of disability, punctuated with acute attacks.
Symptoms of MS vary from one patient to another. There is very little you can depend on during the disease except for its unreliability. This website lists a number of symptoms related to MS, but caveats that most people do not have all of the symptoms, and that many of the worse symptoms are those that appear near the end stages of the disease. Some of the most common symptoms include: blurred or altered vision, numbness in the limbs, increased sensitivity to temperature, fatigure, dizziness or vertigo, bladder and bowel dysfunction, emotional changes, and sexual dysfunction (courtesy of the National MS Society website).
As of now, it is not known what causes MS, but scientists theorize that immunology, environment, genetics, and/or infection may play a part. There are around 400,000 cases of MS in the United States alone, with worldwide cases numbering over 2 million. Of these cases, the majority are women--MS is 2-3 times more common in females than in males--and most onsets occur between the ages of 20-50 years old. For more information about who gets MS, please click here.
There is still no cure for MS, and some of the most commonly used treatments to slow the progression of the disease come with their own adverse side effects. If you would like to know more about current treatments, Wikipedia has an article entitled "Treatment of Multiple Sclerosis" that lays out, and explains, treatments much better than I can hope to do.
Friday, February 25, 2011
What is Capital Challenge Walk MS?
Capital Challenge Walk MS (CW) is a fifty kilometer walk through the DC metropolitan area, which takes place over the course of two days. Planned by the National Capital Chapter of the National Multiple Sclerosis Society, CW raises hundreds of thousands of dollars to fund research for treatments and a cure as well as to provide programs and services to those individuals currently living with the ramifications of the disease, whether it be their own diagnosis or that of a loved one.
How are these funds raised? Each walker in CW commits to raising at least $1500 by September 1st preceding the event. However, many participants go above and beyond this amount--the average amount raised in 2009 was over $1800, and in 2010 the team I walk with raised over $30,000 amongst six walkers and three volunteers. I have been proud each year to raise over $2000, and I hope to be able to to do the same thing this year.
As I mentioned, the walk itself takes place over two days. On the first day, all walkers meet at the starting location by 7:30am, check-in, stretch, and set off on the route around 8:00am. In past events, we have walked about 21 miles the first day, stopping for lunch around mile 11. The route has rest stops every mile and a half or two miles, at which walkers can get water and snacks, use a restroom, and/or just stop for a minute to take a break. Generally, I have gotten to the overnight location (Thomas Jefferson Middle School in Arlington, VA each of the years I have participated) around 5:00pm.
The overnight location has historically been a large gymnasium, and participants blow up air mattresses and sleep in sleeping bags. There are hot showers, a hot dinner (BBQ for the last few years), and a wonderful candlelight ceremony. Lights out is around 10:00pm, and then we wake up at 7:30am to start day 2.
Day 2 starts with a hot breakfast (at least we've been lucky enough to have one for the last three years), and then we're off for our next 10 mile walk--this time from Arlington to the Capitol. Most people have put on their event t-shirts, and so there is a sea of blue and red shirts walking through the streets. Again there are rest stops every few miles, and we stop at a pre-finish a little aways from the Capitol for lunch. The pre-finish is also where awards are distributed, and where we gear up to walk en masse down Pennsylvania Ave to the Capitol Building--usually chanting "2 days! 50K! Closer to a cure!" and sometimes stopping traffic. For the walk from the pre-finish to the Capitol, those individuals who have MS themselves walk in front, proudly sporting their red shirts while the rest of us march behind them in baby blue. Once we arrive at the Capitol (still chanting), we walk across the finish stage, and everybody receives a medal from the Chapter president, Chris Broullire. An a cappella group sings, and final announcements are made. And then it is time to say goodbye to CW, and in my case my teammates, until the next fall.
A few weeks after the event, the Chapter will send out a "Weekend in Review" to all participants, allowing us to see the full list of top fundraisers, sponsors, award winners, and photos. A few months later, registration opens for the next year, and fundraising starts anew.
You can see the 2010 Weekend in Review here. If you would like to show your support and donate to the cause, please visit my personal page.
How are these funds raised? Each walker in CW commits to raising at least $1500 by September 1st preceding the event. However, many participants go above and beyond this amount--the average amount raised in 2009 was over $1800, and in 2010 the team I walk with raised over $30,000 amongst six walkers and three volunteers. I have been proud each year to raise over $2000, and I hope to be able to to do the same thing this year.
As I mentioned, the walk itself takes place over two days. On the first day, all walkers meet at the starting location by 7:30am, check-in, stretch, and set off on the route around 8:00am. In past events, we have walked about 21 miles the first day, stopping for lunch around mile 11. The route has rest stops every mile and a half or two miles, at which walkers can get water and snacks, use a restroom, and/or just stop for a minute to take a break. Generally, I have gotten to the overnight location (Thomas Jefferson Middle School in Arlington, VA each of the years I have participated) around 5:00pm.
The overnight location has historically been a large gymnasium, and participants blow up air mattresses and sleep in sleeping bags. There are hot showers, a hot dinner (BBQ for the last few years), and a wonderful candlelight ceremony. Lights out is around 10:00pm, and then we wake up at 7:30am to start day 2.
Day 2 starts with a hot breakfast (at least we've been lucky enough to have one for the last three years), and then we're off for our next 10 mile walk--this time from Arlington to the Capitol. Most people have put on their event t-shirts, and so there is a sea of blue and red shirts walking through the streets. Again there are rest stops every few miles, and we stop at a pre-finish a little aways from the Capitol for lunch. The pre-finish is also where awards are distributed, and where we gear up to walk en masse down Pennsylvania Ave to the Capitol Building--usually chanting "2 days! 50K! Closer to a cure!" and sometimes stopping traffic. For the walk from the pre-finish to the Capitol, those individuals who have MS themselves walk in front, proudly sporting their red shirts while the rest of us march behind them in baby blue. Once we arrive at the Capitol (still chanting), we walk across the finish stage, and everybody receives a medal from the Chapter president, Chris Broullire. An a cappella group sings, and final announcements are made. And then it is time to say goodbye to CW, and in my case my teammates, until the next fall.
A few weeks after the event, the Chapter will send out a "Weekend in Review" to all participants, allowing us to see the full list of top fundraisers, sponsors, award winners, and photos. A few months later, registration opens for the next year, and fundraising starts anew.
You can see the 2010 Weekend in Review here. If you would like to show your support and donate to the cause, please visit my personal page.
Thursday, February 24, 2011
Nana (or "The long reason why I walk")
My grandmother, Nana, was diagnosed with multiple sclerosis before I was born, in the late seventies/early eighties. At the time she was diagnosed, there was no treatment for the disease, nevermind research for a cure. There was absolutely nothing the doctor could do for her--so he didn't tell her of her diagnosis. Instead, he told my grandfather. My grandfather died of a heart attack without ever telling Nana of her diagnosis. So while Nana knew something was very wrong, she did not know what it was.
When Nana finally knew what was wrong there still wasn't anything she could do about it. Walking was becoming difficult for her, and by the time I was born in 1986, she was walking with the aid of canes. Before much longer had passed, she was using a motorized scooter to get around. I don't think my little brother has any memories of her moving around without it. While my early memories of going to visit Boston involved Dad driving around in Nana's car equipped with handicap hand controls, later memories are of driving around in a van with a handicap lift she could use to get her electric scooter on board.
As the years went by, Nana needed more help doing what many people would consider basic activities. First she would use her grabber contraption to get glasses on and off higher shelves. Later she would need assistance when going to the bathroom--not because of any issues with her bladder or kidneys, but because she could not transfer herself from scooter to toilet and back without help. Eventually she would have help come to her apartment in the mornings and evenings to help her in and out of bed. But through it all, Nana maintained her independence, living in her own condo until the day she died. She is one of the strongest women I could ever hope to meet.
I first learned of the National Multiple Sclerosis Society (NMSS) through my dad's involvement with the Society. He served on their board of trustees of the local chapter, the Southern California Chapter, when I was growing up. When I was looking for internships the summer after my junior year of college, I applied to the National Capital Chapter here in Washington, DC. I knew that I had a personal connection to the mission through Nana; I knew that I had the fundraising/development skills necessary through my work at Duke's Annual Fund; and I knew that I had the event planning skills from planning Gammas on the Green (a charity golf tournament put on by the Duke Chapter of Delta gamma). I was offered a position as Intern, Special Events where I helped with Capital Challenge Walk MS 2008.
As the Special Events Intern, a large portion of my job was sending out "Challenge Chatters," the e-newsletter that goes to participants of the upcoming Challenge Walk. In compiling these newsletters, I realized that everything we were telling our participants to do was something I could do. And that it was something I actively wanted to do. So I signed up and sent my first fundraising email--to my sorority--and received a flood of support, as well as an email from one sister urging others to donate because her mother has MS. Since then, I haven't looked back.
The second year I participated, I emailed a few high school teachers, those I spoke with every time I went back, and received another email thanking me for my efforts from an unlikely source: the man who had run the tech for every musical I had been in. Dr. Parker had been recently diagnosed and was just beginning his journey with MS. His email reaffirmed my dedication to this event. Last year, in my third event, my dedication was reaffirmed yet again, this time by a colleague. This colleague, with whom I'd always been cordial and friendly, but never particularly close to, thanked me for sharing my story and shared his own as well: his friend's mother was also an MS patient.
It is hard to walk 50 kilometers. Each year, on the second day of the walk, I wonder to myself if I should sign up again for the next year. Last year I almost didn't turn in my registration form. But each time I renew my efforts, I am reminded why I am doing this and who I am doing it for. And each time someone shows their support for my efforts, I am reminded that I am making a difference that that eventually the words "you have MS" won't be an option.
Nana, I do this for you. I love you, and I miss you.
When Nana finally knew what was wrong there still wasn't anything she could do about it. Walking was becoming difficult for her, and by the time I was born in 1986, she was walking with the aid of canes. Before much longer had passed, she was using a motorized scooter to get around. I don't think my little brother has any memories of her moving around without it. While my early memories of going to visit Boston involved Dad driving around in Nana's car equipped with handicap hand controls, later memories are of driving around in a van with a handicap lift she could use to get her electric scooter on board.
As the years went by, Nana needed more help doing what many people would consider basic activities. First she would use her grabber contraption to get glasses on and off higher shelves. Later she would need assistance when going to the bathroom--not because of any issues with her bladder or kidneys, but because she could not transfer herself from scooter to toilet and back without help. Eventually she would have help come to her apartment in the mornings and evenings to help her in and out of bed. But through it all, Nana maintained her independence, living in her own condo until the day she died. She is one of the strongest women I could ever hope to meet.
I first learned of the National Multiple Sclerosis Society (NMSS) through my dad's involvement with the Society. He served on their board of trustees of the local chapter, the Southern California Chapter, when I was growing up. When I was looking for internships the summer after my junior year of college, I applied to the National Capital Chapter here in Washington, DC. I knew that I had a personal connection to the mission through Nana; I knew that I had the fundraising/development skills necessary through my work at Duke's Annual Fund; and I knew that I had the event planning skills from planning Gammas on the Green (a charity golf tournament put on by the Duke Chapter of Delta gamma). I was offered a position as Intern, Special Events where I helped with Capital Challenge Walk MS 2008.
As the Special Events Intern, a large portion of my job was sending out "Challenge Chatters," the e-newsletter that goes to participants of the upcoming Challenge Walk. In compiling these newsletters, I realized that everything we were telling our participants to do was something I could do. And that it was something I actively wanted to do. So I signed up and sent my first fundraising email--to my sorority--and received a flood of support, as well as an email from one sister urging others to donate because her mother has MS. Since then, I haven't looked back.
The second year I participated, I emailed a few high school teachers, those I spoke with every time I went back, and received another email thanking me for my efforts from an unlikely source: the man who had run the tech for every musical I had been in. Dr. Parker had been recently diagnosed and was just beginning his journey with MS. His email reaffirmed my dedication to this event. Last year, in my third event, my dedication was reaffirmed yet again, this time by a colleague. This colleague, with whom I'd always been cordial and friendly, but never particularly close to, thanked me for sharing my story and shared his own as well: his friend's mother was also an MS patient.
It is hard to walk 50 kilometers. Each year, on the second day of the walk, I wonder to myself if I should sign up again for the next year. Last year I almost didn't turn in my registration form. But each time I renew my efforts, I am reminded why I am doing this and who I am doing it for. And each time someone shows their support for my efforts, I am reminded that I am making a difference that that eventually the words "you have MS" won't be an option.
Nana, I do this for you. I love you, and I miss you.
WMZQ Commercial
Not why I participate, but exciting: I just heard a commercial for Walk MS and Capital Challenge Walk MS on WMZQ! Way to get word out, National Capital Chapter!
Continue to stay tuned for the long version of why I walk.
Continue to stay tuned for the long version of why I walk.
Why I'm fighting
I fight to end multiple sclerosis (MS) with the National MS Society by participating in the National Capital Chapter's Capital Challenge Walk MS. This fall will be the fourth event in which I participate.
Sometimes it is difficult to force oneself to walk 20+miles on a Saturday and then get up and start over again on Sunday with another 10+, but when I remember all the reasons I participate in this event--all the people I have known who have been affected by this disease--it becomes difficult not to walk. The short version is that I walk for my grandmother, my high school teacher (you can find his blog about his journey with MS here), a sorority sister's mother, a colleague's friend's mother, and for the number of individuals I have gotten to know through this event and become lucky enough to call friends.
The longer version will have to wait until this evening, as it's time to go to work.
Sometimes it is difficult to force oneself to walk 20+miles on a Saturday and then get up and start over again on Sunday with another 10+, but when I remember all the reasons I participate in this event--all the people I have known who have been affected by this disease--it becomes difficult not to walk. The short version is that I walk for my grandmother, my high school teacher (you can find his blog about his journey with MS here), a sorority sister's mother, a colleague's friend's mother, and for the number of individuals I have gotten to know through this event and become lucky enough to call friends.
The longer version will have to wait until this evening, as it's time to go to work.
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