In continuing with my fundraising efforts through Can Do Multiple Sclerosis , I have reached out to the ActiveMSers community to receive various stories of individuals who are living with, and staying active despite of, multiple sclerosis. I have received so many incredible stories of people who are deciding to take action to live the best life they possibly can; so thank you to all of you who have submitted your stories, I will continue to post them in the coming months.
Please check out my personal fundraising efforts through Can Do MS. My goal is $10K by October; we are almost halfway there, every little bit helps! Please spread the word.
Here is Alain Virlouvet’s story. Alain happens to be a fellow Texan! He lives near Austin in the town of Brenham, which is the the hometown of Bluebell Ice Cream. I have to say, my husband and I definitely support the economy of his town through our ice cream consumption! A big thank you to Alain for allowing us to read his personal story, and best of luck to him with the MS 150 Bike San Antonio this October. In Alain’s words:
“Thank you for helping the MS cause. Here is my story that I hope will help in your fund raising efforts.
In 2009 at the age of 62 and out of nowhere, I started experiencing extreme fatigue, vertigo, dizziness, balance issues and that tight constricting feeling in the mid-section of my body that is known as the “MS hug”. Finally, after 4 months of seeing different doctors and all the tests, I was diagnosed with Relapsing/Remitting MS and started treatment on Betaseron. One year on Betaseron resulted in elevated liver levels so my medication was changed in late 2010 to Copaxone, and I have done quite well on this medication.
It took me about a year to accept and adjust to my new life. I decided to help myself as much as possible to slow down this monster MS. I had been doing yoga and meditation for some years and have continued both as I’m certain they are a big help. I was walking every day, but that became laborious and not much fun, so a year ago I started riding my bike. And to my surprise I found that I felt absolutely no handicap while riding my bike. So I had found my new love! I am now riding about 80-100 miles per week and last October I did my first MS 150 in San Antonio. I plan to do it again this year and will try to do the 100 mile course.
Since I’ve been riding I have seen an improvement with fatigue, cognition fog, dizziness and just overall wellness. I feel that I’m lucky (if you can say that about an MS patient) in that my diagnosis came later in my life. Each MS patient’s progression and symptoms are different, but I like to believe that with my Copaxone treatment in addition to the yoga, meditation, vitamin D, vegetarian diet and regular cycling have helped at the least to keep me stable and possibly may even be slowing down the progression.
I hope this has helped and again your support of MS patients is deeply appreciated.
I wish you all the best with your races.
As some of you may know, Multiple Sclerosis is something which is close to me and I have tried to help raise awareness and funds over the years. A few months ago, I came across a website called ActiveMSers. It was started by Dave Bexfield who was diagnosed in early 2006 with MS, in his late 30’s. A writer at heart, he is also an avid traveler and an adventure seeker. His MS, as he said, ‘burbled merrily along’ for the first few years, but in 2009 it became very aggressive. He started taking part in a clinical research trial called Halt-MS (an autologous hematopoietic stem cell transplant using his own stem cells from his bone marrow, paired with high-dose chemotherapy). Since his transplant he has had zero progression physically. In Dave’s words: “I’m on no daily medication for MS or for anything else, and the only supplement I take is Vitamin D. I’m still gimpy, using one or two forearm crutches or a walker when the legs get too stubborn. And for those wondering, yes I still exercise hard every day for 1.5 hours: cardio, strength, and stretching. And I still travel. What does the future hold? I’m as excited as you are to find out. Be active, stay fit, and keep exploring.”
His story and the community he has created through ActiveMSers fascinated me. It is a place whereby those living with MS or recently diagnosed can communicate with one another and gain useful information on living with and more importantly staying active with MS. I contacted Dave and told him that I was intrigued and impressed with what he has done, and I am honored to be able to help raise awareness for ActiveMSers, Can Do MS and also funds to help Multiple Sclerosis.
I have started a fundraising effort which will culminate in my Ironman Hawaii World Championship race on October 13th. Leading up to the race, I would like to feature various people’s stories on my blog; people who have been helpful in telling me their personal story with MS, and ultimately how they are striving to stay active in the face of it.
Any donations are much appreciated, and absolutely no donation is too small.
My fundraising site is here on MS Can Do
Please feel free to share it with others!
An with that said, I would like introduce you to David Gillikin and his personal story with MS.
I just wanted to tell a little bit about my story. I was diagnosed with MS in 2004, and at the time, I lived in Michigan. A new job took me to Colorado, and the fact that I have MS, and moving to Colorado, probably saved my life. Shortly after moving there, my girlfriend and I signed up for the 5K MS Walk/Run, and we raised money and did the walk together. While we were there, we observed the runners doing the 5K Run, and I said to Diane (my girlfriend), “I’m going to do that next year. At the time, no one would have guessed that I’d be able to do it. I was 50 pounds overweight, a smoker, and I drank vodka like it was water. Add the MS to the mix, and I was a mess.
But I did it. I lost about 30 pounds, stopped smoking, and stopped the drinking (now I’ll have some beer, but I don’t drink liquor anymore). Diane and I took up hiking, and we joined a gym where I would go to the treadmill and walk some, run some. It then came time for the MS 5K Walk/Run, and I signed up for the run part of it. Not only did I finish, but it inspired me so much that I’ve since run 7 marathons, about 28 half marathons, and many other 10K’s and 5K’s. I did all this after I turned 50 years old too.
So I can surely say that finding out that I have MS, may have saved my life. Well at least added a few more years to it!
I am now a RRCA certified running coach too so I am looking for others to inspire them to try and do what I did. It’s not easy, but it is worth it.
David’s personal website is MS Runner, take a peek.
Thanks David for your submission, & thank you for inspiring!
Over our Thanksgiving trip to South Carolina, Derick and I had the privilege of speaking to a group of 5th graders at Merrywood Elementary in Greenwood, South Caorlina. This is where Derick spent the first 18 years of his life (in Greenwood, not Merrywood…) =) His mom Donna (my mother-in-law) is currently the school guidance counselor there, and she was able to set this up fairly last minute. Unfortunately I didn’t have my bike with me, as that would have surely been a captivating item for show and tell, but I did have my aero helmet and a few photos which we were able to put up on the ‘smart board’ (I guess this is the modern day chalkboard!).
We spoke with 2 classes each with about 30-40 kids in it, each for about 30 minutes. I talked first about what it was like to be a professional triathlete, how I got to where I am and how many years it has taken me to get there. Then Derick spoke on his education and how being a runner helped him get to college, and how his running really pushed him to his graduate degree and also current job of coaching and having his own business.
Amazingly enough the time went very quickly, and we both were able to allow a few questions during each of our talks. I loved the comment when the slideshow started that went something like “Hahaha…she isn’t wearing any pants in that picture!” Some of the Top Questions included:
“Why is the helmet pointy at the end?”
“How many races have you won?”
“Do you have sponsors?”
“Where have you traveled to do races?”
“What do you do each day?”
“Do you run on a track?”
“How fast do you go on your bike?”
“Who’s faster, you or her?” (to Derick)
I have to hand it to these kiddos…they had very good questions! One little guy even knew the exact distances of an Ironman! When I told them that riding 112 miles was like riding your bike to Greenville and back, that got a lot of “ooohhs” and “wows”. They were so attentive, even when we talked about the boring stuff like ‘even when you don’t want to get up and do a workout, you have to, much like how you don’t want to do your homework sometimes… because in the big picture, it is what you have to do to get to where you want to be.’ My favorite part of chatting with them was when they called me “Miss Kelly.” So cute.
I have to say that we both really enjoyed this, and it is something I would love to do more of. If you or someone you know would like to have us speak to your students, please feel free to contact me. It’s something that I have not initiated enough, but especially in the off-season when time is more available, it is an excellent thing to do. These kids were like sponges; and even if this planted a small seed in their head (about dedication, sports/being active, hard work, goal setting, etc) then it was very much time well spent!