MS Bloggers, Walkers, Researchers & More

It’s been quite the week – it began on Saturday with our local NMSS MS Walk –  we were finally given a beautiful weather day, which made for high spirits and the perfect combination for many people to gather for this good cause.  Our team Ray of Hope: UD Alumni and Friends, had a strong showing of over 50 people.

 

On Sunday I headed off to Boston for a Monday meeting hosted by a pharmaceutical company-  this was their first MS Blogger Summit, and while I am still not quite sure how I ended up on their radar and got an invitation, I  was happy to be there.  This was an impressive group of people who come at their MS and treatment from a wide variety of perspectives and it was a good reminder that my way of dealing with MS is not necessarily the way of others.  There remains to be no right or wrong way to approach Multiple Sclerosis.  I’ll be blogging more about this  MS Blogger Summit, but for now I would like to share the image from this meeting so you can see this lovely group of people who make MS advocacy part of their regular routine.

 

A gathering of the blogger community to discuss needs and interests of MSers

 

Tuesday I had the honor of working in an intensive session with the team at The Accelerated Cure Project, alongside fellow blogger Lisa Emrich and my new MS friend Lindsay.  We are working on a new patient portal that will allow people with MS to share electronic health data, which may not sound so novel since so many sites out there want our data.  What makes ACP’s Patient Powered Research Network (MS PPRN) unique is patients like you and Lisa  and me will help to identify research questions that we want answered.

with Lisa Emrich at the ACP offices in Boston

 

 

 

 

 

 

 

 

 

We left the ACP meeting on the low fly to the airport to jet down to Washington DC for the next day’s PCORI sessions with all the PPRNs that have been funded.   You will be hearing much more from me in the coming months about ways to participate in this project, but in the meantime you can learn more about PCORnet and its purpose through these links.

 

I am always excited and rejuvenated in my determination in advocating for the MS community when I have the opportunity to interact in person with others on a like path – to have four distinctly different encounters this week leaves me almost breathless and it definitely has left me exhausted and in need of more sleep. The only disappointment of the week was my goal to see the Cherry Blossoms in Washington DC were dashed by a strong spring wind and torrential rain that flushed the blooms from the trees a mere 18 hours before my arrival; a live view will remain on my bucket list and perhaps next year my timing will be better. Until then , the wonderful photos of others will have to do.

What I might have seen if only the weather had left those fragile blossoms to hang one more day…..

 

 

 

 

 

 

 

My latest blog for MultipleSclerosis.net What’s in a Name takes a look at what we are called as a community,  and please be sure to take a moment for the Dr. Pepper link to understand my jingle – wouldn’t you like to be an MSer, too!

Enjoy the beginning of the spring season, and I’ll see you soon with more details.

Be well,

Laura

 

 

 

 

 

 

 

 

 

Roundup – More MultipleSclerosis.net blog links

I want to synchronize several of my accounts and share more of my multiplesclerosis.net links here –  the latest round up of my writing -

Learner’s Permit

After you have been highjacked by MS,how you get the wheel away from MS and steer your own life?

Clinical Trials

Getting involved and staying on track with clinical trials as a participant is not as easy as you might think.

 

How are You?

They may be asking but do people really want to know the answer when they ask ‘how are you?’

There are many more which have beehn published over at MultipleSclerosis.net – to find them search for ‘Laura’ follow those links.

 

As always, thanks for allowing me to share my words and thoughts with you.

 

be well,

Laura

 

 

 

Dear Blog….

Hello, InsideMyStory.

You were my first and I still like you, but I have been kept away by so many other distractions, not the least of which is another blog site.  Through my good fortune, I was asked to be a regular contributor to the startup website MultipleSclerosis.net, and my writing is being viewed by a much larger audience than we had here, thanks to a large and still growing Facebook presence.   At times it feels like I am cheating on you by sharing my words in another place, but I have to go where I can reach the most people.

If you need to check in and make sure I am still championing the cause of MS, you can find me and my words through http://multiplesclerosis.net by typing Laura into the search box or clicking on my name here.   The MSnet Facebook site is very active with over 30,000 likes, and links to my blog are posted there as well and have generated a good deal of conversations, but sometimes these can’t be as simple to find.  Please stop by one place or another and check it out, ok?

Missing you,

Laura

 

Something on Our Minds

With Multiple Sclerosis, that is an appropriate phrase since there is so much going on in our minds – both in rampant and often random thoughts and the physical disease process.  It is also the name of a newly released book – Something on Our Minds: An Anthology to Benefit the National Multiple Sclerosis Society, of which I am very proud to be a contributor.

It was purely by luck that while on the National Multiple Sclerosis patient website, MS Connection, I stumbled across a group named We Write for the Fight that was founded by Tracy Todd. From her starting this group where originally it was thought we would just creatively share with each other, Tracy was struck with a larger vision to publish our words for a greater good. As overused as this saying my be, thanks to her perseverance this project evolved from a dream to reality. Through the editing efforts of Tracy and Sean J. Mahoney, this group of about 50 people who have never met but who like to write and often do so about MS, sent their contributions electronically through the MS Connection site, and are now published authors in Something on our Minds.

The best part about this project is really two-fold.  The first is all of the money from the sales, and I am talking 100% of the profits, is being donated to NMSS for their programs.  How great is that? Secondly, this book has over 250 pages of heartfelt words from people with MS and their caregivers, and will help to share the experience of living with Multiple Sclerosis with others so they might understand our situation just a bit better.  Everyone who submitted work for this first edition is published in this book, no one was turned away, and these creative writing pieces are a mix of styles, but each and every one of them conveys the strength and resiliency of the MS community and the urgency to find a cure.

I am proud to be a part of this project, and have three stories included in the book.  It was a thrill when the box was delivered today and I found my own copy tucked inside. Thankfully I ordered two copies, knowing I would want to share one but now I am faced with the challenge of deciding who that might be.  My pockets aren’t deep enough to buy one for each and every one of you reading this, so I hope you will find a way to get your own copy or two.

Something on our Minds can be ordered through Amazon.com for the price of $11.07, and if you order several copies, it will qualify for free shipping.  You may also order Something on our Minds, ISBN 9781484965245,  through the publishing site at https://www.createspace.com/4217529  for  $12.95 ($3.95 shipping).  This is also an Amazon.com business, but more money profit is generated and will also all be donated to NMSS.  If you prefer, it is also available through Barnes and Noble’s online bookstore.

Go ahead and consider this a shameless plug on my part – I am excited to have my words published in such a worthwhile way and am thrilled to have this chance to share them with a much larger audience than my own family and friends.  Beyond that, this is another way that we can contribute to the efforts to wipe out MS.  We’ve all heard of the power of the pen, and now it is the power of the keyboard as We Write for the Fight!

Wishing you well,

Laura

 

.

 

Who am I? My Role in Social Media

At 58 years old I rarely find I can be called ‘new’ at anything, but yet I find myself in that position when it comes to Social Media and Health Care advocacy. This is an area I am a mere novice at, but find that I get great satisfaction when I connect with others and can make a difference for them and me.

Perhaps it comes from my early work as a journalist and my love to write. I’ve always wanted to share the who, what, when, where, why and how of the story. That dovetails with my personal need to understand the medical situations I find myself and my family experiencing. I want to know more. I want to know why is this happening? And I definitely need to know how learning about your situation and mine can make our experiences better.

 

I cut my teeth on internet information sharing and the sensibilities of a medically inspired community at Inspire.com after I had a heart attack in 2008. My cardiac event was unexplainable to the medical experts and that wasn’t an acceptable answer to me. Not only did I want answers, I needed them, and I turned to the internet looking for other women who shared my experiences.

 

A few months later in the same year I was diagnosed with Multiple Sclerosis. The support network that got me through my search for heart answers had given me the foundation to search out another community that could assist with my MS needs. I landed at MedHelp.org and soon after they offered me a position as one of the volunteer community leaders for the Multiple Sclerosis forum, a role I still enjoy today.

 

MedHelp.org and Inspire.com both have areas for members to journal their experiences, which I did extensively at both sites. Then a few years later, I began blogging here at InsideMyStory.com about cardiac health and multiple sclerosis – two health conditions I have personal experience with, dabbling at it when I had time and the motivation to write. I tend to write in spurts and then set it aside for longer periods of time.

 

Blogging inspired me to check other communication methods using Social Media to connect with like- minded others who also have stories and experiences to share. I am on Facebook – I started there only to keep in touch with friends but that experience expanded to include several MS groups as well. I joined LinkedIn and am in several networks, one of them an MS related group started by the Myelin Repair Foundation. There’s also a Pinterest account sitting neglected, because I don’t allow myself the luxury of time to get lost in all those boards from other people. Talk about turning on my creative juices- I’m concerned it would only encourage me to start new projects that I don’t have time to complete. I have always been a great starter – it is the finishing that seems to trip me up.

 

I was late to Twitter and my account is less than a year old. I love to get lost in reading tweets and following links and find it is probably the one SoMe I could turn into a full-time job if only I didn’t already have one. However, most of the time I am just reading and every so often passing on what I just read, I must admit I still don’t have the protocol of Twitter down and when I retweet, more times than not, I forget to note RT or MT. I haven’t a clue what any of those other initials commonly used stand for.

 

Then along comes this new Social Media enticement from the creators of www.migraine.com – MultipleSclerosis.net and their Facebook group and web site. It was flattering when they reached out and asked if I wanted to be a part of their MS group, and I am now one of the regular contributors to their blog as well as a moderator in their growing online presence. It is exciting to be involved with a new venture and have my writing viewed by people other than my family and friends. I won’t lie – when I saw thousands of people had seen my blog on MS, Annette Funicello & Death,  it was exciting to know that my thoughts are being read by so many people with MS and maybe I am giving comfort through education.

 

I find I now have  my own dilemma going on with the who, what, when, where, why and how – there’s not enough time to do all the things I am lured do in Social Media, something has to give and I am having trouble picking what that might be. Obviously I can’t give up my day job, since there is a paycheck and health insurance attached to it. The Social Media world has so much to offer – now if only I could find a few more hours in the day to participate in the many forms available

Day 6 (April 6) – Letter Writing

Dear MS,

We’ve been corresponding for some time now, but it’s been mainly a one–sided relationship. I wish you would take the time to listen to me and not make this so lopsided. I try to send you the message that I’m tired of this and would like to move on, but you don’t seem to be getting that message and you get in touch with me at the most inopportune time. I am not amused.

I never dreamed I would be the type of person to write a Dear John letter, but that’s exactly what I want to tell you. I want to break up – would you please just go away?

Tired of you,

Laura

Day 4 (April 4) – Sharing Resources

We are fortunate that there are a tremendous amount of resources to assist people with Multiple Sclerosis. In fact there are so many that it can be confusing as to where to turn.

 First and foremost, if you are newly diagnosed, contact the National Multiple Sclerosis Society (NMSS), and in particular your local chapter.  They have online materials as well as printed ones,  that cover just about every MS topic for you and your family and friends.

 

The MS Foundation (MSF) and Multiple Sclerosis Association of America (MSAA) offer many ways to support the individual patient and are just a phone call away.

 Any of these three organizations are great places to begin your journey of understanding Multiple Sclerosis – knowledge is power and you need all the knowledge you can take in when living with MS.

 Even more powerful than these organizations, though, is the ability to talk directly with other people living with MS.  Most people don’t have a support group in their home town, but you don’t have to worry.  There are several excellent patient forums on line  – the people on these sites are  always ready to welcome a newly diagnosed person and lend support and are willing to answer your questions. Long established, MedHelp.org has an active MS Community and someone is almost always around to strike up a conversation with, most hours of the day. 

 

There is a fledgling site – multiplesclerosis.net  – that is worth a second look, too.  There is an extensive amount of information and areas for input from people with MS, including discussion forums and places to post your own story when you are ready to share. There is also an active blog section where many of us regularly share our thoughts.   

 If you are newly diagnosed, remember you don’t have to know everything immediately – your MS is going to be around and you have plenty of time to learn more.

Be well, be proactive-

Laura

 

Day 2 (April 2) – Introductions

If you are a new visitor to my blog, Inside MyStory: Life with MS and More, let me introduce myself.  If you already know me and my story, you might skip this blog and read something else.

I was diagnosed with Multiple Sclerosis in 2008 and after the initial disbelief, I quickly moved on to wanting to learn more and in turn help other to also understand more about this mysterious disease.

For the uninformed, MS is a disease of the central nervous system (brain and spine) and is sometimes viewed as an invisible disease.  We may look good, but our immune system is overactive and slowly creating havoc internally. Common problems with MS include balance, vision, bladder dysfunction and cognitive problems.  There’s lots of great information on the web to learn more about Multiple Sclerosis.

One site I am pleased to be associated with is http://multiplesclerosis.net, where  you will find factual answers to just about every question you might have about MS.

Support from others who have the same disease is beneficial and if you are living with a chronic disease I encourage you to find others who understand the challenges you face.  A good place to talk with other people who also have MS is at http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

You can find me at both sites – MS Net as a blogger and at MedHelp as a Community Leader.  If you come to either one, please be sure to say hi and let me know you are there.

Wishing you well,

Laura