Tag Archives: MS SoftServe progress

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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 Progressive (in a good way)

Slow but steady. The text for the “staging ground” is being posted. Its the “Don’t Worry Be Crappy” theory in full force. More editing is needed… but it will do for now.

So that text will be up in a day or so. But a bunch of text describing what will be isn’t much. Words get boring and don’t hold the attention span for long on this multi-media ride that is the Internet. So where is the video?? Its in the proverbial can…just needs a little bit of editing. It’s unfortunate that I didn’t have Final Cut Pro handy when I was recuperating from my Pancake House burns. That would have been a very productive week. No, I spent my days dressing wounds and writing angry letters to the Better Business Bureau.

I was hoping to find an NYU student who would be willing to do the editing for a little extra cash. (little is the operative word) Unfortunately they are too busy with coursework. Damn those priorities!

On another note: SoftServe Matters, the nonprofit that LegalZoom is processing is proving to be a much slower process. I check its status every other day. It makes me anxious because I know that once it is official there will be grants to apply for and proposals to write.

It’s very much hurry up and wait ride. Wanna go for a spin?

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MS SoftServe -More Progress

I think this coming week we will be a productive one for MS SoftServe. We’ll be editing the video that will explain the staging ground. We shot it intermittently between work… trying to pop in and grab a shot whenever we could. That resulted many variations on light….and shots that look just slightly different. I’m hoping we will be able to compensate for this variation by making it compelling in content if not style.

It was my desire to make the development of the site follow a similar approach as the SoftServe technique itself. For example. You will have the option to download a pdf of the information, listen to the content being spoken, as well as watch a video of someone (in this case me!) explain the concept that is being developed. It would seem egregious to make a developmental site that doesn’t follow the theories of instructional design that the site being developed is all about!

We will also start the design of the map of progress. This area is very exciting to me. It will explain what it is we are planning on developing for MS SoftServe. We are going to continue to develop the site as long as the ideas and needs continue to flow. I will look forward to the feedback and suggestions that people from the MS Community world-wide have to offer. It is an organic process…. growing and changing as the needs of this population evolves.

Another exciting element (are you getting that excitement is the lait motif here!?) is that SoftServe Matters, the proposed non-profit established to create MS SoftServe and SoftServe web-learning for other chronic illnesses is likely to be through the process of filing with the state. With that we will commence with our fundraising effort, full-swing.

Thanks for reading…and if you are following the progress and have any questions or comments… please respond to this blog, until the site is up and running.

In the meantime. Thanks for reading.