Wednesday, May 5, 2010

Multiple Sclerosis, Social Media, Wonderful Individuals Who Make a Difference

I am home from a fantastic trip during which I met some amazing people living with and affected by MS. We barely had time to truly get acquainted but it was obvious that these are folks with whom we each want to stay in contact.

Marlo Donato Parmelee, MS vlogger on Youtube (teslagirlm) and author of the book Awkward Bitch: My Life With MS. Marlo is a musician by training (opera singer) who has a band and works for Donna Karan in London a place which obviously values her expertise and energy despite MS. Now I've got to go read her book and prepare to give her a plug for the US book launch event which will be hosted in New York in September.

Birgit Bauer, author and columnist for the leading German woman's magazine and creative MS blogger at Mein Leben mit MS. As people are still hesitant to reveal their MS diagnosis in Germany, Birgit stands out as a strong example of courage and humor. Birgit's MS has a persona known as Fräulein Trulla, who likes to lie around on the couch and doesn't want Birgit to leave her at home and get on with her life. I love the imagery of Fräulein Trulla pouting and demanding more attention.

Freddie Yauner and George Pepper, cofounders of which if you don't know is a unique online community based in the UK but open to anyone anywhere. is the only online community I've seen which truly offers up services to the younger generation of folks living with MS. Freddie and George are energetic and passionate about helping to facilitate connections among people with MS...and they do this in their spare time while holding down full-time jobs. Plus they have a really cool logo and brought stickers to share with everyone.

Although we had a welcome dinner and started to get to know each other and we had opportunities to tell bits of our stories regarding our online activities, it wasn't until the meeting was over that I felt we started to have a chance to get to know the real people behind the online social media personas. It was obvious that these are just a few of the many amazing individuals who are making a difference to other patients online. We each contribute to that everyday by our simple participation in blogs, on twitter or facebook, on youtube, in communities or message boards, etc.

When I have time to process my thoughts regarding our discussion of how social media is helping patients online, I will share those here. It was such a whirlwind day and we hardly had time to scratch the surface that I hope these thoughts decide to take root and not fly away (darn cognitive fatigue and memory issues).

In the meantime, Amanda Dolan from WEGO Health, which has started an MS community of their own, sent me an email while I was away. Here's her message (in italics) and my response.

Hi Lisa, how are you? I'm working on an upcoming post about MS bloggers and MS Health Activists and I would love to include your thoughts in the post.

Compared to many health conditions, there is a rich online MS community - especially with MS blogs. So, in light of this, I want to compile responses about what got everyone started and what keeps them going, as bloggers. I think this will be really helpful for those who want to blog about their health condition but aren't quite sure how to go about it. The online MS community is one of the most prolific and I think it serves as a great example for those who want to grow their own health community.

Could you tell me - What inspired you to start blogging about MS? What keeps you going as a blogger?

I'm looking forward to your response! Thanks so much,

During the first four months of my blog's existence, MS was discussed very little. I began my blog to focus on health policy, insurance, big pharma, and the extraordinarily leaky safety nets where are supposed to help patients. I ranted a bit (with a balanced approach, of course) and wanted to document what I had to do to obtain the help I needed. The blog was very academic in nature as well.

At some point another blogger living with MS commented on a post and through her, I discovered a network of MSers blogging about their lives and the disease. In an attempt to help bring these bloggers together and to feature outstanding material, I started the Carnival of MS Bloggers which was the turning point in my MS blogging involvement. I officially joined the MS community online with this move and we have grown exponentially since.

Bloggers may come and go, fulfilling their needs at a significant point in time. I've seen this happen with MS bloggers in our community. One thing which keeps me going with the blog and other online adventures is that it is not all about me. I hope to contribute to a whole which is greater than the sum of its parts and certainly greater than the role I play within it.

We (the bloggers, vloggers, forum participants, etc) are like blood cells which flow through a body. If we all congregated around one hand within the body (or greater online community), the rest of the body would die. And if we isolate ourselves and never venture back to the lungs where we find personal nourishment and rest, we would individually die off. Although my travels online may never take me to the left foot, I am comforted to know that others feed that community and that it thrives.

Since I began blogging about my own MS and since opening myself up to the welcoming community of MS bloggers and writers, I find more nourishment and calm in dealing with my own life. I am an educator at heart, a musician by training, and a writer gaining on-the-job training. It is wonderful if others find my contributions to be helpful and worthwhile. It is more important that I find my contributions to be helpful and fulfilling.

This is what keeps me going, especially at those times during which I feel I have nothing to say. Ironically on many of the days where I might simply put up a link to a funny cat video or a cartoon, those are the days where my "peeps" come by and leave a word of support. Life is not all about MS and that is important for all of us to remember.

Thanks for asking,


  1. AWESOME, Lisa. Glad it went so well. : )


  2. Thanks Jen! Really wished that you could have been there. The highlight for me truly was meeting these other individuals. We were each so similar yet different in our experiences and beliefs.

    Only one non-present participant stood out in representing a different viewpoint from his own personal philosophy and patient community. I'd rather dream big and see what truly is possible in offering services and using technology to improve the lives of patients everywhere.

  3. You do such great work in pulling all the resources together and connecting people. Keep it up! Mary

  4. You have so immersed yourself in the MS world, I often wonder how you can stand it. It has to be all the wonderful supportive messages you receive from the people you are helping through your blog, etc.. Still, I appreciate getting that information, too. Gee, have I just contradicted myself?

    I really enjoy hearing about your REAL life -- you know, the one apart from disease. As we all say, we are more than our disease/s.

    Be well. Glad you had a good trip and met some new friends.

  5. Tre cool. I love Germans. I know more tales will follow after it all sinks in. I feel proud to have YOU represent.

  6. Dear Lisa,

    this is Fräulein Trulla speaking! And I have to say, that Mrs. Bauer is very active today.
    She makes me angry, because she is ignoring me and is enjoying her life. She was at Switzerland for talking about me, but she left me allone at home.
    This is not very nice, because I wanted to wear my new decent Twin-Set and I wanted to know you all.

    Nobody loves me.

    Best Regards!
    Fräulein Trulla!