53 results for “PatientsLikeMeInMotion”

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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“Shocked” – Kim talks about life with multiple sclerosis, becoming an advocate and PatientsLikeMeInMotion™

Posted April 23rd, 2014 by

Last week on the blog, we celebrated the 6th year of the PatientsLikeMeInMotion program. And this week, we’re touching base with PatientsLikeMe member Kim (aka “2006”) who we’ve had the honor of sponsoring a bunch of times through PatientsLikeMeInMotion™. After she was diagnosed with multiple sclerosis (MS), Kim was inspired to get involved in advocacy and fundraising events with her now legendary team, Kim’s Cronies. She spoke with us about her diagnosis with relapsing remitting MS, the evolution and growth of her fundraising efforts and just how much the MS community on PatientsLikeMe means to her.

You were diagnosed with relapsing-remitting MS in 2006 – what was that experience like?

My experience with being diagnosed was probably like everyone else. “Shocked.” My symptoms started with visual changes. I had Lasik surgery done 3 years prior and thought that something was going wrong because of that procedure. I went to the eye doctor and he mentioned optic neuritis, and being in the health care profession, I knew that was usually in relation to multiple sclerosis. Already, my mind started racing thinking all about the negative things related to MS. Within a week, I went to see my MD and had an MRI, which did read MS. I was then referred to a number of specialists for further testing. This was a quick, life-altering diagnosis. So with this new diagnosis, I started to find out as much as I could about this disease. I went to a support group, talked to everyone who mentioned something about or knew someone with the disease, I read as much as I could about MS on reputable sites. I went to the National Multiple Sclerosis Society site and sent for hard copy information.

I was scared to have this diagnosis and thought I would be incapacitated in no time. But I did find out there were many new treatments out there and I needed to get on them ASAP. Once I started to get comfortable with this new diagnosis, I then started telling people about it, but that took at least a year or so before I was ok with it. My thought was I can either make the best of things and enjoy life, or give up. Everyone has issues at some point in their life. I came to the conclusion after researching this disease that I was lucky that it hit me at the age of 39 and not sooner.

I was so happy to learn about PatientLikeMe too. I’ll never forget that there was a segment on the news about your website. I remember jotting down the website and as soon as I got home, I accessed it and joined. I’ve found your site to be a great avenue to communicate with others and to find out how people are doing with different therapies. It makes you realize you are not alone.

At what point in your journey with MS did you become a fundraiser/advocate? What does that mean to you?

The year I was diagnosed I did do the MS walk in Cheshire, CT, with my mother in 2006. I wanted to do something for the cause. I solicited donations from co-workers and raised approximately $200.00. I also ended up taking a loan and used Sky Blue Credit Repair to improve my creditworthiness. I did not start getting involved in fundraising until a friend of mine decided to get a dozen “gals together” and created a team around me called “Kim’s Cronies” to walk and raise money for multiple sclerosis – that was 2010. Our team grew to friends and family in 2011, and it was in 2012 when the captain of our team, Ellen Kearney, proposed the idea of a pasta dinner with raffles. Her amazing family was right behind her to support her idea and I went along for the ride as co-captain. When we began soliciting for raffle prizes from different business and acquaintances, we truly learned how generous people are in the community. So many people are willing to give and help out a worthy cause, it puts faith back in mankind. It allows me to realize I am helping others with multiple sclerosis, it’s not directly for me, and that’s an awesome feeling to give back to others. The other interesting part of this is that most people have some personal connection to this disease and want to help in finding a cure.

Can you tell us about your awesome team Kim’s Cronies? How did you get so many people together?

Kim’s Cronies started out with a small group of women wanting to do the MS Walk. It was a good cause, there was a personal connection and it was a beautiful day in May to walk in Forest Park. We basically did it for the camaraderie and support. As stated previously, more and more family and friends wanted to join our group and support the fight against multiple sclerosis. We have now grown into a group of 50 or more and are still growing. This group has joined in on the Kim’s Cronies Pasta Dinner with Raffles that attracts more then 300 people. This pasta dinner is a segue to invite anyone who is interested in raising money and wants to walk. We are all-inclusive, and we even have the elders join us the day of the walk for the picnic afterwards, even if they are unable to participate in the walk. It’s about showing support to make people aware of this MS and raising the money to fight this disease.

We’ve had the honor of sponsoring you and your team for multiple events. What keeps you coming back to PatientsLikeMeInMotion?

Kim’s Cronies deeply appreciates the generosity of PatientsLikeMeInMotion. We are so grateful that you are willing to support us in raising money for multiple sclerosis. We will continue to look to you for sponsorship. Kim’s Cronies wants to be associated with a great resource. I personally access PatientsLikeMe as a resource for any questions I have concerning this disease, medications, treatments…I remember messaging individuals on therapy changes and getting a message back concerning their experience with their treatment. I know of no other site that allows me this opportunity. It’s a great connection to have, and I let everyone know about the networking that is available to them through your website. It’s an honor to be associated with you.

What would you say to others in the community that might inspire them to get out there and raise awareness, too?

I truly believe I was given an awesome opportunity to be allowed to fundraise for a worthwhile cause as multiple sclerosis. This disease affects me personally, but I do not view this as I am doing this for me. I look at it as helping others. Helping others is a totally different outlook to have concerning a chronic disease. It’s a way of being of service to others and not just feeling sorry for myself because I have this disease. This gives one a sense of purpose in this world, volunteerism is so rewarding. I have plenty to keep me busy – I have all the responsibilities in life of your non-affiliated person, but I believe volunteering for any cause you believe in is a gift.

Kim’s Cronies will continue our fundraising as long as we possibly can. Every penny raised helps the fight.