The new phone book’s here! The new phone book’s here!

I heard this very amusing podcast or NPR, or maybe it was PRI. Coulda been Fresh Air or This American Life, no..  … oh, I can’t remember. Anyway there was this girl, who’s father always used to sing every time they came upon something new, or the mail was delivered or something like that and it became a family thing. It was just something her dad always said. And then the girl went to college and saw The Jerk and thought, OMG! my dad says that all the time! So she called him to tell him about this movie called The Jerk…   Ok, you know the rest and I can’t remember any more deets as is often the case. So we’ll just stop here. Unless of course you need more quotes from that movie that was released during that very impressionable decade of the 70s….no no no! Stop Amy! We are done here.

Breathe in, breath out.

What you probably Do want to know what this has to do with MSSoftServe or my MSLOL blog or anything, related to anything. But unfortunately  I’ve….got…nothing. It’s just what was in my as I searched for a title and the brain-stampede that followed. Hmmm. Brain Stampede! I like that.

If you are still with me, I invite you to read and or subscribe to me on HealthCentral’s MS site. I’m writing for them again after my sabbatical and doing so with the ever-informative-ever-educational-ever-musically talented, Lisa Emrich (of course you know the Carnival of MS Bloggers– everyone knows about that!)  I’m writing about all things MS and all things vacation planning (Oh, there’s that “p” word. People with MS don’t do that!!)  over these next few weeks while some of the info can be put to immediate use.  So….If you haven’t gotten weary from visiting the many links I’ve already provided: Go here (MS Envy) then here (Summer Vacationing with MS) and finally here. That last one has the “p”word in it…. so if you have children listening you might want to ask them to leave the room. 😉

MS Surveys- Do you participate? 1- not at all, 2-sometimes, 3- once a week…. 5- everyday

How often do you read blogs about surveys? 1-never 2-some of the time, 3- most of the time and 4-always. I’m hoping your response is in the 3-4 range. 🙂

MS~LOL: Multiple Sclerosis a Life Of Learning

I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month)  – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a…

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Oh Snap! (pictures of you and other realities when living with MS)

Check out the latest post on MS-LOL- I started writing this in February and just made it in under the wire. So my  resolution of less procrastination starts off now.

http://mslol.me/

26 (46) and a week!

This has been an intriguing first week of my 47th year. Though I grow wiser every year- (no shocker, don’t we all?) this past week has more to do with my life mission- a.k.a. MSSoftServe, a.k.a. Softserve Matters (just the official 501c3 name) a.k.a. tax deductible donations. 😉

Much of the work has been behind the scenes during these past few years – one foot has steadily been placed in front of the other (an accomplishment for pwms!)  and we are moving along.  (I may be using too many parentheses! Parenthesis are the new commas after all.)

CTTCA (cut to the chase amy!)

There have been three postings about MSSoftServe this past week.

• The first one I wrote for Real World Health Care which is quite an honor.  It’s called Learning about MS on the Internet- What works and what doesn’t.
• The second is an essay written by the Jeri Burtchell on HealthLine.com. That one is called  Nonprofit to Launch Interactive Learning Platform for Multiple Sclerosis. 
• And the third is a blog post written by the oh-so-famous award winning blogger Christie Germans at The Lesion Journals.

It’s fun reading what others have written about MSSoftServe. I’ve been saying these words for such a long time, it’s hard to find new fresh exciting ways to refer to it. Thanks Jeri and Christie for taking the time to inspire with your perspective. (MTF- I just invented the acronym for “more to follow” with this explanation so you don’t feel out-of-the-know!)

So please take a moment to read. The more people read these posts,  the more posts there will be. And the more posts that there are, the more awareness will be spread. And the more awareness spread, the more grants we will win. Which of course leads directly to the site’s production and an audible sigh of relief emanating through the land when finally we (pwms) will get this site that will make dealing with MS a little easier! 😉

Pfew. That was a mouthful. (Or is it a fingerful at the keyboard?)  Perhaps its both! (I can’t decide)

Thanks for reading and clicking and reading.

amy g.

 

De-marcation of De- myelination!

Happy 46th to me. Happy 26th to my MS.

MS~LOL: Multiple Sclerosis a Life Of Learning

In 1968 the price of a movie ticket was $1.50, The Beatles topped the charts with Hello-Goodbye and 2001: A Space Odyssey was on the marquee. On the longest day of that year, Vicki and Harris had a baby girl at JFK hospital in Edison NJ.

 In 1988 a movie ticket was $3.50. Never Gonna Give You Up topped the charts, A Fish Called Wanda was on the marquee and that little girl turned 20 years old on the longest day of the year when another time maker entered the calendar. In Edison, NJ at JFK hospital where “little girl” was diagnosed with Multiple Sclerosis. 

From that point on it wouldn’t just be movies and music that would mark the years. It would be an incurable, unpredictable disease that no one understood. The It’s the MS equivalent to  “where we were when” JFK was assassinated, (not yet born!) when…

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C’mon, Jump In. The Water is Fine.

I’ve never been fond of water. I was one of those kids that didn’t like to get my face wet and all the swimming lessons I took- and weeks at camp and endless trips to the NJ lakes- didn’t help. I mean- I can swim with no problem. I was never as good as my sister who everyone said was a fish or my BFF at the time (Debbie Watson!) who was on the swim team and could do every stroke invented. So, jumping in has generally happened after a hearty push. (A little help here!)

I’ve also found that when I make announcements that I will try to do something from now on- in an effort to trap myself in to a ritual- it doesn’t take. So I won’t say that from now on, I will post casual updates on how MSSoftServe is progressing. Ones that need not be cleverly worded, and smoothly edited. I won’t talk about triple checking for grammatical faux pas. Heck, I won’t even look up words in the thesaurus for snappy synonyms. I won’t even throw out links to funny references that are irreverent. I may even cut to the chase. 😉

I’ve been working on MSSoftServe to get it ready for a Medstartr campaign. (the kickstartr of the healthcare revolution) We (the board and yours truly) have the word spreading site with “everything you want to know about MSSoftServe but didn’t know where to fund” up and running. Bonita Rutigliano, the director who has made our web prowess possible, will help this weekend to make the sites flow a bit easier. (thank you in advance Bonita!) Margaret Gurowitz has been developing our PR plan that will include a stakeholder & message map, (let’s throw in some leverage so i can sound even more corporate!) as well as a sizzle reel. I have learned so much in the past few weeks. Like that the woman married to your brother for 26 years has incredible talent in PR. 😉 And Calli Higgins has provided her expert advice (and I’ve yet to thank her personally!) as we move through this process. A shout out to all the directors- for their time, dedication and commitment.

Show it! Don’t Tell it!
One of the most important part of our forward movement is that we need to produce “tutorial” that show how this site is different from all other websites. (emphatically stated by directors Roz Kalb, Steve Abrams) When I graduated with my Masters in 2006 (see pic below) I created a DVD to give everyone I met insight into MSSoftserve: A Life Mission. It included a very serious video of my talking the talk, a narrated powerpoint presentation most importantly a video tutorial type thing that walks everyone through a small segment of the site (as it looked then) to really give them a look at how valuable it will be. Revolutionary even. (Don’t do it. Don’t go to the thesaurus.. You promised Amy!)

So the “show it” piece is very important. We need to lead with it. Unfortunately we don’t have the funds to have it produced and it will take some time for me to produce it on my own. So, I’m looking for opinions. Do I set up the medstartr campaign with a video that only tells? When you look at the videos I’ve already produced, how well do they convey what MSSoftServe will do that has never been done before? Do you think any of them would be appropriate for medstartr? Should I record another that is a more compelling “tell” until I get the “show” produced?

Inquiring minds want to know! So please share and reinforce that i’m not typing to myself!

I will see you next week. (I really will. I feel like this time I won’t need a push in. I’ll lean in on my own. 😉

~ag

So serious Right?! How is it that 2006 seems like yesterday but looks so young on me.

Right (write) now!

Do you find that it’s really hard to read an entire essay, post  or article online? I  think attention deficit is a sign of these digital times- there is just too much distraction.  Information overload on the web leaves many people running and screaming for focus and peace-of-mind. (can you say Candy Crush)  And it’s becauseof the fact that I too am soaking in the overwhelm,  that I find it really hard to write and spread the word about MS SoftServe. Does anyone reading beyond a headline and the first two paragraphs?  Is everyone like me – a Scanning Queen? (use Abba harmonies here). But with your help (ie. reader stats)  I will push myself away from the wall and on to the dance floor. Please  join me out there!

The “Right Now- MSSoftServe Update”
You may know that mssoftserve.org is currently  a word-spreading-fundraising site. It’s the site that will raise the money to produce the customizable site  people with MS want and need. ( link )  We are using the site to serve as the aforementioned as well as a tool for larger outreach. (ie. fundraising outreach to the foundations and corporations who can get on board and make the site happen).

So what we now need everyone to do now is represent.  We need to send a message to the granting organizations to tell them that MSSoftServe is necessary to all of us who are affected by Multiple Sclerosis. To tell them that meaningful learning with more control and less anxiety will be a critical part of how we cope with this disease. And that we need to be able to teach everyone around us about our unique version of MS- without the unnecessary info that will only make our loved ones confused and anxious.

How can you do that, you ask? I’ll tell you (with links!)

There are a couple of ways that you can make your opinion known on mssoftserve’s current site. You can submit a testimonial (words and/or video).  And if that doesn’t fit into your schedule, just “sign” your name and we can add you to the “big list” of people who are waiting with baited-breath for this to hit the web. (send it to the contact-us link) If you need an inspiration, please have a look-see at the testimonials of the board of directors. They don’t have to be long, nor aesthetically pleasing. They just have to be you! And while you’re there, browse around And if you want to be a part of MS SoftServe in any way please email me!  (amy@mssoftserve.org) And put something that really sticks out in the subject line so that it doesn’t blend into the rest!

Well…. I’m hoping I haven’t left you lost in word count. In the future I will cut-to the-update-chase in weekly posts.

(C’mon Amy, you can do it! Write now!)

We’re Almost There. For Real!

Yay MSSoftServe! Yay you! 

Ok, we’ve been at this for a long time. MSSoftServe started as a vision, became a more substantial concept, and is now it is so close to becoming a reality. I’m sure you are all exhausted. I am too. This has been a very long road! But we are SO CLOSE! In fact, we’re only $90,000 away from actually building this thing!

So I ask you to stay the course, stick with me, and let’s cross the finish line together. (Hmm. This is starting to sound like a presidential campaign!)

Thanks to the foundations, corporate sponsors, and many of you who have donated to MSSoftServe, we’ve created the launching pad, or a diving board, or gateway that is alive and well at mssoftserve.org. Whatever your preferred “jumping off” metaphor is, this site is how we describe the online resource that will help us to: raise the funds, to produce the site, to create the tool, to empower people, to cope with the disease! 😉

(If for some reason you haven’t heard about MSSoftServe check out the video… I’ll wait for you. 🙂 )

The current site was designed by Clocktower Media of Seattle at a very discounted rate (thank you very much!) and will be the ticket to get MSSoftServe funded and produced (also at a discounted rate with Clocktower Media.)

How? I’m glad you asked.

This site, in its current form, is a one-stop-shop for everything you want to know about MSSoftServe and its production. It’s got videos, its got testimonials it’s got all the information that enquiring minds want to know. So whether you’re a person affected by MS, someone who represents a small foundation, a large foundation, a corporation- which ever category best represents you; this is the place to go to learn more about MSSoftServe and how you can make a difference for over 2.5* million peeps who are trying to deal with this very confusing disease. Now, how many opportunities in life afford that kind of impact?

And if you do fit into any of the aforementioned categories, chances are that you know that everyone who is living with Multiple Sclerosis has his or her own unique version. So here’s my question: Why should we all be expected to learn about the disease in the same way? I mean, how is that cookie cutter approach supposed to work?

(Spoiler alert)

It doesn’t!

One reason is that most people affected by MS, don’t want to know about every possible symptom, every scenario, every unpredictable outcome that may (or may not) affect her or him. And the people who care about them, who are also trying to understand how this confusing disease will affect their friends and family, will likely get freaked-out from the vast amount of info online. And with everyone on edge it’s hard to find support, everything gets worse from there and the downward spiral begins. PWMS need a support network. They need the people in their lives to understand what they are going through. If their friends and family don’t understand what they are dealing with, they can’t possibly help them manage the disease.

 

And let me say, MSSoftServe will be all that and more. It will only take $90,000 to produce the final www.mssoftserve.org site. (The complete operating budget is on the site. Total transparency. For real!)  A pretty small price tag for something that makes the lives people dealing with MS a bit easier, dontcha think?

So go! Go to the site that explains how we will do all of this. And spread the word, donate the funds (any amount) and tell any organization that is considering a grant to this nonprofit, that they will be beloved by the masses.

 Got questions? Email me, friend me, IM me.  (amy@mssoftserve.org) Because I love talking the talk and speaking with people who want this personalized site so that we can all cope more easily with MS. 

 Your support and encouragement has helped me (and our board of directors) to keep our eyes on the prize of helping all of us who are living with MS.  You’ve also helped to keep my energy and focus on this lifea mission. And like many of us who are living with MS, energy and focus aren’t always easy to come by.

So go grab your beverage of choice, sit back and watch some videos. And then tell everyone who you think will care about our effort and be interested in supporting it.

Then sit back and wait for those warm fuzzies, laced with enthusiastic motivation, to set in. 

Thanks~

 

*This number has been reported for decades and with 200+ diagnosed in this country a week, me thinks it’s a huge underestimate. Just saying 

In the beginning~

Revisiting: Since I started working full time on making MS SoftServe a reality I’ve stopped writing for my blog- trying to dedicate time to the cause. But its been hard. Writing has always been an important part of my coping mechanism- controlling my lack-of-control-de jour by pushing words around is so empowering. And connecting to my MS community- finding people who relate has been an amazing boost in my day to day. So… I’m rereading and re-sharing my posts. If you have a minute or 5 to read… please do. It really fleshes out the satisfaction levels! So here it is. Please join me in 2007!

http://mslol.me/2007/05/14/in-the-beginning/

MS SoftServe in 2013

Hello and Happy New Year~

I want to thank everyone who has contributed to MS SoftServe last year, and the years leading up to it! We’ve made so much progress behind the scenes and I’ve been remiss in reporting.  I’ve been so busy trying to get it all together- the board meetings, the video production, the site content, the prep for the launch of pre-site, the entire run of Breaking Bad, Homeland and an embarrassing amount of time playing scrabble, spell tower and flow. ( Ah, ADD- allows me to do so many things at once!) I try to reason that I deserve some off time, but my boss can be a real pain and she hassuper high expectations of me!   (this is particularly challenging considering I am the boss of me!)

So if you have kept up to date on this blog you are saying to yourself “What happened to that fab fundraiser that was to take place in The Village last year?”  Well The board determined that it is a greater priority for MSSS to raise money for the site’s production and that  events like this, while important in spreading the word of the MSSS mission,  require a lot of elbow grease and I’m sure you’ll all agree that when living with MS – our elbow grease is heavily rationed.) As fate would have it, that decision prevented a collision with Hurricane Sandy’s landfall.

As 2013 begins we will complete the pre-site with the help of board director Bonita Rutigliano and Clocktower Media.  At which point Ed Conroy, our development consultant, and I will go in to full gear fundraising mode. And before year’s end we will be well on our way in production of the site. You know….. the one that will be a groundbreaking tool to help us live, learn and teach about our unique version of MS.

I know, I know… you are sitting there wondering… How can I help?

I’m so glad you asked because there are so many ways to be a part of this production. Yes, donations are important but we are also are in need of volunteers who have expertise in writing, accounting, editing, web management-ing, PR  or just plain word-spreading.

FUBU: This is a for-us–by-us production and your involvement will make for a rich learning site that meets the needs of the diverse community that we are. And by highlighting the PWMS* who believe in this effort will be an important component in fundraising. So, write a letter, a note or better yet, record a video. Tell funders why MS SoftServe will be so important to you as you cope with your  MS.   Please check out these videos that feature directors who have made the case for MS SoftServe – Let’s add your voice to that team!

Until next time!

Amy G.
(Living with it since 1988!)
*people with MS

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