Tag Archives: Website

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“Some” Voices of Multiple Sclerosis

I read  a recent  edition of the New York Times blog column Well entitled Voices of Multiple Sclerosis.  My husband is my editor. He is the one who steers me past the articles that he know will torment me for days and to the ones that will intrigue and inspire. It’s easier now that we have made the “green” transition to e-reading. Instead of piles of folded papers cluttering our flat surfaces, emails accumulate in our virtual mailboxes with encouraging subjects such as “Keith thought you would be interested in this…”    Such was the case for Voices of MS. And while it sat in my “in” box for a bit, eventually I did read and in this case listen.
I was moved to write a letter to the columnist Tara Parker-Pope though I have yet to send it. So, I thought I would post it here and get some feedback from my readers.. especially those of you who have MS. (but not to out rule those who don’t!)
Ms. Parker-Pope,
Thank you for giving voice to some of the diverse individuals who live with Multiple Sclerosis. Watching and listening to their experiences brings out many reactions; personally and professionally.
As a person who has been living with MS for over two decades I connect with each of these stories, with an understanding that ranges from “I know what you mean” to “will this be me?”The latter of which is the approach/avoidance that I experience with everything I read or see about MS. I have met many people with MS over these 20+ years that echo this sentiment.
It’s hard to satisfy such a varied group of people. Any media outreach is obligated to represent. If the sampling doesn’t provide a person from each “walk” of life then someone is alienated. In doing so however, many people with MS who are fearful of their uncertain future are not interested in reading more. Though some want to know every possible outcome so that they can plan for what might happen, many don’t want to waste valuable energy worrying about something that may never occur. It’s counter productive on so many levels most significantly, managing each day do be the strongest one can be within their individual circumstances – emotionally and physically.
It is this reality that inspired me to become an educator that uses technology to create ideal learning environments for individuals who live with such an uncertain future. I have designed a web-learning approach that allows each person to customize what s/he wants to learn and how s/he wants to learn it.  Called MSSoftServe.com, it uses techniques supported by learning theory and preferences that can be set to reach each unique individual with MS.
This educational tool serves up information as the users want to absorb it – based on their own symptoms and concerns – without exposing them to information they are not looking for that replaces their desire to learn with fear and uncertainty. Or if your approach is more “rocky road” (“I want to know those worst case scenarios”), you can specify accordingly. Whatever the situation, this new way to learn about health on the web is self-directed and ultimately empowering.
(MS SoftServe is a non-profit organization currently seeking grants to fund its development…blah blah blah.)
I just left off there. I’ll obviously revisit this before I send it to her. Maybe a more refined ending! 🙂
In the mean time… I welcome your thoughts.
~ag
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MS SoftServe- Getting There

Today was a good day of shooting. I have a set up in an adjacent office and Bonita (my webmaster/director/vegetarian cook adviser extraordinare) assisted as we embarked on our third day. It’s easy for me to get honestly enthusiastic about the website in spite of the fact that I have been discussing it for 3 years. I guess the hard part is getting me to stop talking… and focus has always eluded me. 🙂 What I set out to do is explain what MS Softserve is, why we need it, and ultimately what this “staging ground” concept is.

From the very beginning I have surrounded myself with great advisors. I think that is truly a skill I have mastered in my late thirties. Being married to and artist, photographer, instructional designer is very helpful. Keith’s creative thinking and strong resources have proved very helpful in this process. One such connection is to Doreen Stiskal, a PT Phd who is also an expert in Instructional Design. As I was completing my thesis, Doreen and a number of other individuals from Seton Hall (where Keith worked at the time) offered a critique and practice presentation which turned out to be particularly informative. Much of her early observations shaped my presentation. So as I set out to produce MS Softserve I sought her counsel yet again.

She had some terrific advice. As we discussed all of the areas that I am working towards expanding… she quoted Guy Kawasaki “Don’t worry, be crappy.” (“Revolutionary means you ship and then test… Lots of things made the first Mac in 1984 a piece of crap – but it was a revolutionary piece of crap.“) That really spoke to me. I could work forever on what this needs to be before I launch it. At that rate it will never get launched.

Get something up there. And start filling in the blanks as it is developed. She sited Brad Pitt’s effort to rebuild New Orleans one room at a time. You can sponsor a bathtub if that is the level you want to contribute.

Recently Madeline was invited to a birthday party where in lieu of a gift, it was suggested to donate to heifer.org What a great way to explain charitable causes to a little person. On the site you can contribute real things to real people. She decided to donate her money to bring a box of chicks to a family in Africa who can use them for to start a business.

So, with that in mind… you can go to MS SoftServe and choose one particular area of study to have developed. Perhaps your are a big fan of the Central Nervous System and you want to see that prioritized. You can make a contribution to complete that entire section. If you would rather contribute a lesser sum, you can sponsor just an animation in that section. The map of progress will be the key to see what areas have been completed and what is to come.

This site will thrive as people with MS help to shape it. Participation can occur on many levels. Whether it be the content of the site or the methods of learning, you can put your mark on what this site becomes. By doing so, you will help the site to serve a wider audience.

more later…

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MS SoftServe TimeLine Entry 1

As of today we have finished taping the video for the staging ground of MS SoftServe. The website is being produced, the video edited and the content developed. We expect to have something running within the next two weeks.Keep checking back under this category. (MS SoftServe TimeLine)Feel free to post your thoughts!We’d love to hear from you.Amy

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yes i CANe

So the normal disclosure… if you’d rather not hear details of my MS experience that may make you uncomfortable about your uncertain future… consider yourself advised.


I’ve been using my walking stick for almost three weeks now. It didn’t take long for me to get used to having it around…and to learn how to juggle it with my commute gear. My backpack, my water bottle, my reading material, my ipod, my train tickets and then Metrocard. It takes some practice..but I’m finding the rhythm.

I’m move back and forth between considering what my needs are and how I am perceived. It shifts from day to day, minute to minute and scene to scene.

What started as a strange feeling that I am perceived as someone who is faking it… evolved into a better understanding of why I need this. Because I clearly don’t have problems with my gate (unless I stumble with a foot drop once in a while) it occurs to me that it almost seems unnecessary for me to be using it. I felt questioning gazes that I answered for the first two weeks with a sticker I put on my cane that read “I have MS”. The gazes turned to squints as subway passengers sat across from me looking my way.

I was reminded of the attempts I made as a young person (middle child) searching for that extra attention. The ace bandages and slings on perfectly normal arms, wrists and ankles. The troubled looks beefed up by eight year old winces wanting to stay home for a little extra mom-time.

But this was legit. Even though I was using the opportunity to examine how people treated me with this implement… I legitimately need it. It wasn’t a show.

As I got used to carrying it… and using it to provide extra support I found that I was able to move quite quickly with it. It seemed that as moved with the crowd people would frequently bumpt in to it, kick it, and one time a woman actually pulled it from my hands (inadvertently) when giving it a “flat tire”. Very apologetic of course.
During this time I questioned my role with the cane further. When leaving and arriving at work I had it with me and people I interact with daily expressed concern over my well-being. Most don’t know I have MS. My response to their concern changed over time. What started as a sometimes detailed explanation (I always try to educate whoever I can about MS) became “I have balance issues”.

It was a funny coincidence that during this period the Science Times had an article that described a more dramatic situation than mine. ( PERSONAL HEALTH; A Stable Life, Despite Persistent Dizziness – New York Times JANE E. BRODY)
Somehow finding this explanation helped me to identify myself in a more comfortable way. And even though no one asks me why I’m using it, I tell myself throughout the ride. “I have balance issues” and somehow that feels good. Not, “I have brain damage”, or “I have an uncertain future” just balance issues.

I like that somehow. I can own it. And the cane… just shows that I have more to contend with than the average joe (or jane..as it were) commuter. That works for me too.
more later…

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MS SoftServe- A life project in progress

Tomorrow when I get to work, I will be using all off-moments to videotape myself speaking about the important aspects of MS SoftServe. It feels like I have been working so hard on these incremental accomplishments toward to larger goal.

Yet in spite of my constant effort…and my ongoing advances, there are days when it feels out of reach. Days when actually writing about my progress on my blog seems insurmountable. If I just pass this small milestone (getting http://www.MSSoftServe.com up and running in a skeletal form, get SoftServe Matters approved by the state as a non-profit, get people to come read my blog and develop an audience, figure out a way to work on all of this full time, start planning a fundraiser for MS SoftServe…) then it will all fall in to place. Or will it?

Maybe this is what starting up always feels like. Forging ahead with a life dream that is self-guided is probably full of these mini-accomplishments that mark the bigger picture. I look forward to actually having a moment to spell my whole project out to anyone who might be reading this. I look forward to having a place to create all the MS SoftServe proposes. I look forward to benefiting from what the SoftServe approach has to offer.

But for now, I look forward to going to sleep!

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Mind Blowing

I ‘m not sure how it is that I’ve set up this blog to discuss my life of learning with Multiple Sclerosis, yet I haven’t once mentioned the web site I’m developing for that very purpose. With that I have set up a new category….MS SoftServe. To read up on the status of this site just check of the category on the right. There is much to report!