MS Cure Fund Celebrates the 2nd Annual MS Adaptive Ski Day
What do you get when you mix MS patients with a remarkable group of dedicated volunteers and a whole lot of snow? An MS Adaptive Ski Day of joy and camaraderie for the ages. January 12th saw the 2nd Annual MS Adaptive Ski Day take place at Sunday River Ski Resort at Newry, Maine. MS Cure Fund once again teamed up with Maine Adaptive Sports and Recreation to host this fun and rewarding event. MS Patients came from as far as Connecticut, New Hampshire, Massachusetts and Maine to participate in this annual event.
The program was kicked off Sunday night, January 11th with the presentation of a patient education program entitled “The Risks & Benefits of Changing MS Therapies; How & When to Talk to your Doctor”. This is a brand new series topic of free educational programs being rolled out nationally and it was the 2nd time ever presented. Risks & Benefits takes an entirely new approach by having two separate presenters, one a prescribing physician, and the other a patient representative who share their respective points of view. The program then concludes with a role play session where the doctor and patient representative act out three different possible scenarios to demonstrate how a good doctor/patient interaction should go. So often patients are not given the tools they need to be able to advocate on their own behalf. Risks & Benefits seeks to change this by giving patients specific tools to achieve their best outcome from DMT selection.
Monday morning brought a welcome break in the frigid January temperatures, as well as a snowy forecast. Seven MS patients showed up with as many caregivers/family members. The phenomenal staff of Maine Adaptive Sports were welcoming as always, taking care of getting all of the MS’rs outfitted with everything they needed. With the adaptive needs ranging from nothing but a guide/instructor to a “bucket” adaptation for people who have little or no use of their legs, the home of Maine Adaptive was a flurry of activity.¬ The day was wonderful. Eyes lit up with true joy and appreciation for the opportunity to expand beyond what many thought possible.
For many people living with MS, the day of diagnosis begins a steady decline in the things they can, or “think” they can’t do. Much of this is self-preservation. People living with MS often want to protect what abilities they do have, so they restrict themselves from anything that might put them at risk. Someone with vision loss in one eye may decide to never play a racquet sport again, such as tennis, because they are afraid of being hit in their one good eye. They may never have been hit by a ball before in their life, but now it seems too risky. These little limitations tend to take a toll over time. What was most evident at the MS Adaptive Ski Day was the unabashed joy at doing something new, of going beyond the comfort zone and experiencing a broadening of their horizon. Maine patient Carla C. summed it up best when she said “I had no idea this could be so much fun, I am so grateful!”
Lunch was met with smiles, cold feet/hands and warm hearts. Except for a few cramping issues, all seemed well adjusted and ready for a few more runs. Once again bundled and buckled we all headed out. With cameras shooting constantly, runs were taken until thighs began to burn and the reality of working those not so used muscles began to kick in. All in all it was a truly wonderful day. Friendships were forged and promises made to do it all over again next year.
We would like to thank the people of Maine Adaptive Sports and Recreation again for all their support and help. We really can’t thank them enough. Their commitment to making all activities accessible to anyone who wishes to participate is unparalleled. To learn more about Maine Adaptive Sports and Recreation, visit www.maineadaptive.org or call (207) 824-2440.
We also want to thank all the MS Cure Fund staff and volunteers who gave selflessly of their time and energy to make the day so smooth and without a hiccup. You truly made it a day about the patients and we are very grateful. Thanks to Katie Valovcin and Cam Morton for all the video and photos. Thanks to Chris Cowie and Matt Bourdeau for all the support and photos. And all hats are off to Alyssa Neshe whose overall management and coordination made everything from the patient education program to the last detail at the end of skiing run smooth as silk.
Most importantly, thanks to all seven MS’rs (The Magnificent Seven) and their support people for facing their fears, getting out and showing up! Your participation is inspiring! Your attitudes are infectious! And you make all of us humble and honored to be of some small service. Congratulations to ALL!