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.😉
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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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.
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.
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.
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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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.😉
So serious Right?! How is it that 2006 seems like yesterday but looks so young on me.
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! (firstname.lastname@example.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!)