MS members share about their PatientsLikeMeInMotion™ experiences

Posted October 15th, 2014 by

PatientsLikeMeInMotion™ is a way to celebrate our three star members (super health data donors) and sponsor them at events so that they can raise awareness for their condition. If you’re passionate about advocacy and you’re participating in a walk, run or other fundraiser on behalf of your condition, learn more and sign up right here. 

We caught up with three MS community members who are active participants in PatientsLikeMeInMotion. They shared about the events they’ve been a part of over the years, why advocacy is important to them and several ways PatientsLikeMe has helped them manage their MS. Scroll down to read what they had to say. 

Ajcoia 

“Since being diagnosed in 2002, and after my sister was diagnosed in 2001, I have participated and captained every event the Greater Delaware Valley MS Society chapter has offered. This includes the one-day walks, MS150, Muckfest MS and Challenge Walk MS. My favorite event is the Challenge Walk MS, in which I have participated all 12 years. I have met so many wonderful and inspiring people through this event, which brings me back year after year.

Advocacy is huge, because without voices out there speaking on our behalf, we would never get any funding or support. I have been to Washington, D.C. 3 times on behalf of the National MS Society, and I know that our stories being told to legislators help.

PatientsLikeMe has been a wonderful tool for support and also a great way to keep track of symptoms. I love that I receive valuable information about MS and data that they have collected. I also love that they support my teams and I when we participate in events, both monetarily and with their great tee shirts.”

Special1

“I have done the Southern California/Nevada Walk MS events every year since diagnosed in 2009. So I have participated in approximately 5 walks. The first year, I was not able to walk far because of fatigue and heat intolerance. The 2nd and 3rd year, I sat and cheered my team on. This year, I was so glad I was able to walk the 5k with my team of 32 members. We have grown from 14 members the first year. When I form the team, I always go with raising awareness and then concentrate on raising funds. The weather was cool this year, a great day to walk, and I am glad I was able to walk. Last year, the Beat MS Dance walk was started by “So You Think You Can Dance” member Courtney Galiano, and I participated in the event for the second time on Sep 13, 2014.

I have always been a people person, and since I have to be home so much because of symptoms from my MS, I love getting out and seeing new people, including people I meet online or through others. All have showed me that as long as I just keep doing what I CAN do in this new life of mine, I will continue to find reasons to smile. This last year one of our team members, a 16 year old, was diagnosed with MS, and it opened everyone’s eyes and reminded them that life can change at any moment. Value today.

I worked in the medical field for 15 years, and I medically retired due to cognitive issues. When working, I would push my patients to fight, whether it was high blood pressure, diabetes or any illness they were being attacked by. They would come back and thank me through the years. So when I was diagnosed the first year, I was glad to know I wasn’t just going crazy, but I didn’t know how to now be the patient. Slowly I fell into the role of patient, advocate and fighter. I have gotten calls from old coworkers to get info from me to give to patients who are newly diagnosed. Those calls made me a little sad, but also made me happy because I was still needed.

I first heard about PatientsLikeMe on a social media site. I signed on and connected with strangers who I now call friends, I log my meds and health info and sometimes print my health info out and take it with me to doctor’s visits. I like how I get an email asking me how I’m doing, and it’s so easy to use. PatientsLikeMe has also helped me raise awareness and funds for my walks and MS events since 2009.” 

CKBeagle

“I walk. I walk every day. I walk my dogs every day. I walk for my physical health. I walk to get outside for my mental health. For the past several years I have walked for the MS Society and I have the t-shirts to prove it.

Most recently, I have been a part of the Journey of Hope Walks that the MS Society uses to help provide additional funding for society-approved MS Clinics and MS Specialty Care Centers. Currently, I am team captain for our AbFab Concord Neurology Team for MS Specialty Care Center walk team. I know, bad name, but I had to make sure that everything was in there, especially the AbFab, because that is important. Why do I do it? I am not a neurologist. I don’t work for Concord Neurology. I don’t even work for Concord Hospital. I do volunteer at the “clinic” once a month as peer support. Did I forget to mention that I have MS?

The clinic is a wonderful service for patients with MS. On clinic days, they have the opportunity to meet with a neurologist, counselor, physical therapist, occupational therapist, social worker, nutritionist, MS Society representative and peer support to discuss any and all aspects of how MS affects their lives and how their life affects their MS. For the most part, I spend a lot of time asking questions and listening. I try to provide direction on what strategies I have tried to deal with different situations and offer an understanding ear for complaints. I encourage people to relay information to the doctor or therapists even if they think it is unimportant. I learn how other people are coping with the changes brought on by MS. I feel I get as much out of it as I give to it. We all have something to offer.

One of the things that I make sure to give people is the information on the PatientsLikeMe website. I have found it to be an interesting resource for information on treatments and also a way to track my health and attitude history. I especially enjoy the researcher interest on the site where you can provide input on treatments or general health through surveys.

On top of that, I LOVE the PatientsLikeMeInMotion™ program. It was how I first became aware of PatientsLikeMe. I got in touch with the community team, let them know when and where my walk was, kept myself as a 3-star patient and bam! I was accepted into the program. They made a donation to my walk and sent t-shirts for the team. Cool beans! The whole team loves the shirts and the donation helps the MS Society and the clinic. Now all I have left to do is the walk. For now that’s the easy part. Because I walk. I walk every day.”

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