“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 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.


One Comment

  1. Kim, keep it up! Please join me and check out Hidden River Health Challenge. Together we are learning about the role of gene types and toxins, the keys to chronic diseases and the paths to health, and about the importance of our own health information. We are sharing what we learn, and we are taking action to help ourselves and others. We focus on root causes, which indicate new and simpler treatment paths. It is grassroots to global, it is patient led and patient focused.
    I’ve spent two years learning about this, nearly full time, pro bono, as I’ve recovered my health. We extend patients as partners to full patient empowerment. Would love to talk with you.

Leave a Comment