Tag Archives: MS SoftServe

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I gotta new way to walk (walk walk)*

The place where it all began...

The place where it all began…

Last week I took home my brand-new pair of Walk-On® foot braces– though I prefer the more fashionable phrasing, “assistive foot accessory” 🙂 It all started about 6 months ago when I signed up for physical therapy at Kessler Institute for Rehab here in NJ. It didn’t take long to feel improvements that reached well beyond the muscle-strengthening, balance-increasing, core-engaging milestones. Just taking this pro-active step made me feel better. Not to mention the positive influence of having someone (a.k.a Liz) cheering me on for even the slightest improvements. We should all have someone who plays that role in life, dontcha think?

In addition to this twice a week cheer-lead gig, I have been part of the Kessler’s Wellness Program for PWMS and I can’t begin to tell you how it’s changed my life. It’s funny how the ability to learn is so contingent on timing and circumstance. (Considering my MS SoftServe mission you’d think I’d know that by now!)

The Cheerleader and The Cheered!

The Cheerleader (Liz Woods) and The Cheered (me)!

So it was at one of these sessions that a physical therapist (we’ll call him Joe, which is in fact his name!) talked to us about balance strategies. It was basic stuff that I hadn’t considered; like how to stabilize oneself by pressing the outsides of your feet to the ground. Smart right? Then he spoke about the assistive devices. In addition to balance and dizziness issues, I have intermittent bi-lateral foot-drop. i.e. I pick up my foot, my toes drop and then I do. It happens unpredictably on both sides and gets worse as I fatigue. This reality makes for some serious apprehension with every step I take. And even with the added insurance of a walking stick- I continue to fall. And every fall is a fall too many. (Especially when it’s in front of my daughter- that just sucks!) As far as assistive devices, I thought I knew what was out there. I had heard of the commonly used device – the one that sends an electrical signal down your leg prompting your foot to lift at just the right moment. I figured if things should get worse I know it’s out there. And after all, my foot-drop is intermittent and occurs both of my feet. What was I going to do? Wear a brace on both feet?

Yes… apparently I’m doing just that! When I learned about the variety of braces- each offering different degrees of assistance and all different degrees of unassuming, I realized I need to revisit this. So I did at my next therapy session. Liz sized me up, made a recommendation and sent me off to the brace clinic- also at Kessler.

While I waited for my appointment, I continued to doubt myself. Is this something I really need? I mean, I don’t have that bad a case of foot-drop… Well that feeling lasted for all of 10 minutes abruptly ending with my pre- and post- brace walk demo. As soon as I heard all the oohs and ahhs from the cluster of experts watching me from behind, I knew that this is going to be a huge improvement I my life. I hadn’t thought much about my apprehension in walking and how much energy I wasted on making sure I won’t fall.

My brand new assistive foot accessories!

My brand new assistive foot accessories!

When I took those babies home I looked and moved like a different person. I found an audience in my family ooh-ing and ahh-ing with every sashay & shantay. And while I was concerned about getting caught up in the feeling of “OMG, I have to wear these things to walk well?” I am completely distracted by the whole “OMG I can walk so well with these things.”

And they are oh so subtle. One might not notice unless that one happens to be on the ground and spots the carbonate strip running down the back of my calves. And who does that!?! 🙂

After 25 years of living with this totally-unpredictable, completely-incurable, constantly-changing disease I thought I had a pretty good handle on managing it. But managing one’s MS is not unlike a cat chasing the red laser pointer dot that disappears just as the paw is closing in on it. Apparently I’m gaining on it!

*If you don’t have a person in the house who has watched Sesame Street in the last 1o years then you probably aren’t singing this title like I am. And because I find the tune oh- so-necessary to properly express my enthusiasm watch this.

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Dear Blog: I’ll make it up to you~

I know, I know. You are shaking your proverbial head, clucking your proverbial tongue saying, I knew after that LJBF (let’s just be friends) letter that you would forget about me. But please, blog, let me explain.

You see, the writing at MS Health Central has really picked up and I’m finding the content of that site to be valuable; I’m honored to be a part of it. And get this- I’m doing a video project there as well. (of course I could be doing the same with you, just saying..)

Then there is Wego; an incredible site that “Empowers Health Activists.” (check out the link to see what that means! It’s the blue word “Wego.” But of course you know that!) There are some very exciting things happening on that site and I’ve been contributing in many ways.  I was recently on a panel talking to pharma on behalf of the MS community.  And…I’ve  been a part of video conversations with meaningful topics like “The Decision to Use an Assistive Device”– but those haven’t launched yet, so you wouldn’t know about it. (I’ll be sure to keep you “posted” if you are interested!) Oh, and most recently I’ve been looking for other people with MS who want to be in these video conversations. So blog, please spread the word.. I’m sure that there are a lot of people with MS who would love to participate… and you are still in my top 3 list of reaching out to peeps with MS. (PWMS)

I’ve also been very busy with MSLOL Radio– the monthly webcast that highlights people who have a significant role in the community. And there are so many! (I hope you noticed that I used your name for this show; so you should feel honored.) Because I want to “give the people what they want” I am taking suggestions for topics.

And then there is MS SoftServe. Of course I’ve been talking about this with you for ages now. But things are ramping up. We have applied for our first grant and have many more apps on deck. Getting this site up and running is imminent and it will not only be invaluable to the newly diagnosed, but also to the long term-ers who don’t want to know about every possible MS symptom that may never effect them. (MSSoftServe.org is the staging ground.) And there are some amazing features for individualizing the learning experience. Oh, I forgot to tell you… I have another blog dedicated to MSSoftServe. Perhaps you’ve run into each other at the water cooler. This has been so helpful in keeping everyone up to date on our progress.

Please don’t look at me that way. I promise I won’t go so long without a meaningful entry. Hey, here’s what I’ll do… I won’t just post links to my other writings – I’ll post information about the links. That way people will stop and read you for a bit- and it will keep you update on where I am. How does that sound?

I won’t say how important you are to me; I don’t want it to sound hollow. I’ll just prove my loyalty to you and not go months without talking to you. You’ll see. It will be great!

Thanks for being my BBF*.

Love, Amy

*best blog forever!

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Please Don’t Hate Me!

Dear Blog,

Please listen to me. I wouldn’t cheat on you. You are, and always will be my main squeeze. I mean c’mon, we’ve been so close since we first met in 2007. And we have had so many LOLs together. I realize that I haven’t been around much lately, or answered your emails. It’s just that I’ve been busy. I know, I know I’ve always had plenty of time for you. And okay, facebook had distracted me for a while, but I always come back to you- sharing my deepest emotions, ones that I couldn’t tell anyone else. You’ve been such a supportive part of my life and that means the world to me. No, I’m not breaking up with you. It’s just I’m hoping that we can see other people.

You see, I’ve started seeing Health Central’s MS Site on and off. While nothing compares to you, there are some things I need to say there. And yes, the giveback there is helping my non-profit MSSS come to life. You remember MS SoftServe, right? We’ve spoken about my connection there many times. I promise that I will reserve the words that are closest to my heart for you. And just to prove to you nothing inappropriate is going on, every moment I spend there I promise to give you a link so that you can see for yourself .

There is nothing to be threatened by, so I hope you are okay with it. And while I won’t be around as often, I will always to come back to you. In fact, I have this great idea in my head right now. It’s about MS and exercise… I debated where to write it and when push came to shove you won Blog. You can expect me back with that one soon. But in the mean time, check out this one I just wrote at Health Central. And thanks for being so understanding!  You’re  ’da best!

With a pixelated love found nowhere else on the Internet,

Amy

P.S. incase you didn’t know Blog, the word “wrote” is a link. Incase you missed it: http://www.healthcentral.com/multiple-sclerosis/c/93851/109609/home

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“this” ability

It’s official.

With a June exacerbation my perspective changed. The dizziness intensified and I was unable to move without finding myself in a turbulent ocean. It was as if waves were pushing me in both directions, a sensation that is by no means easy to describe. That, in concert with a number of other challenging symptoms, landed me on 5 days with methylprednisolone– the classic treatment for an MS episode. One that I became all too familiar with since long before disease modifying drugs hit the market. With a synthetic burst of energy,  a convenient side effect, I celebrated my 41st birthday and 21st anniversary of my MS diagnosis in one day. And for once, a side-effect was appreciated… allowing me a state of being beyond my normal abilities. I milked it for all it was worth- went out to eat for every meal and enjoyed many moments on this significant day that fell in the middle of this unfortunate episode. And beyond the steroid boost, I thrilled as the numbers grew on my facebook-birthday-fundraiser for MS SoftServe.  Matching the frequency of my accelerated heartbeat, each one of my digital re-introduced friends wished me well. A positive reinforcement only known in modern social-networking. And as is the case after any all day party, I was left tuckered-out with a virtual house to clean.  Coming off the 5-day intravenous treatment was more challenging than any post-party metaphor could convey.  When all of my natural adrenalin rushed to the empty space that the steroids left, my system crashed. For over two weeks I slept and slept and slept. I’ve had many experiences with the steroid shock treatment and none of them ended like this.

When the neurological dust settled, I was left with considerable movement-based-dizziness in addition to the other symptoms I carry like luggage wherever I go. But this was different than the episodes that have preceded it and not only because of the symptoms that are now constant. In this case I realized something that I hadn’t known before.

The post-episode halt left a space for conversation and understanding at new levels. A system reboot- a defrag- reconnecting lost signatures.  Apparently every day that I left my house with foot dropped, vestibular disturbed, movement compromised, he feared the worst. This most optimistic man that I married feared that I wouldn’t make it through my work-day without injuring my self. And every night that he was teaching and late commuting- he heard in my voice the exhaustion that prevented me from being the mom I needed to be while he wasn’t yet home. This drive in me to persevere no matter what MS threw my way, was in fact weakening the fortitude that kept my foundation strong. My perseverance was compromising every thing and every one.  I don’t know where to start in this long list of ironies.

So through his eyes, I was able to see that working every single day for 7 hours plus the commute to NYC was not evidence of how much I could endure- how MS didn’t own me. But was instead the ingredients that compromise my ability to function at the level that all three of us deserve. I wasn’t spitting in the face of this disease, I was giving it control over the wrong parts of my life… and by taking myself out of the most visible realm of accomplishments “…and I work full time too!” I could concentrate on the most important one… being at home and awake for my family.

And so, as the papers are finalized and my role with the university completed, I’m finding new abilities in this label. My limited energy is now made available to my magical daughter and my dear husband. We all deserve more than what wasn’t left at the end of the day. And with that I’m learning that this ability– is the greatest of all.

I look forward to finding more than I expected with this “official” disability. Something that could only to be realized when I stood still long enough to see what they had been pointing at all along.

//

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MyMSMyWay~ Refine and Relaunch

A number of months ago I wrote about MyMsMyWay.com. (previous post link here) The website that provides valuable information for people with MS who use their computers. (I trust most readers of this blog fall in to that category!) This collaborative of Microsoft, Bayer and the National MS Society sought the counsel of 8 individuals with MS (myself included) from around the country to guide the production of this site. In doing so, they have come up with a site that not only has a wealth of information, but also considers our experience in its design. Their most recent update makes it easy to find information about how you can resolve challenges that people with MS may have working with our computers. The new and improved version provides a more user friendly interface and considers some of the principals of MS SoftServe. (ie. people like to get information indifferent ways-as seen in a listen to feature of the site that will be added soon.)

So take an opportunity to check it out. I’m quite sure that you will not only find helpful information, but also a resource to rely on as your experience with MS and your computer may change over time. To get a complete idea of how your individual needs can be met, start with the snapshot tool. (You can get there by clicking on a picture of me and my daughter.)  If you have any thoughts you would like to share, you can do so on the site in the “About us” section. Or feel free to talk about your experiences and or needs here, I have an inside line. 🙂

ag

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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 – The word

So the documents are off to the IRS and although this means that I will be entering in to a new sphere of red-tape… I’m excited. Each small step brings me closer to the larger goal and that is very satisfying. Maybe the hurdles jumped and goals achieved are what is to be on the landscape of SoftServe Matters- the engine behind MS SoftServe. There will be web development and grant applications. There will be involvement from those who want to put their mark on SoftServe and ultimately more sites will be generated for more illnesses. Helping more people who struggle with information overload but want to learn.

And then there were faux pas.

So with the new video up on mssoftserve and youtube I thought I would reach out to the people on patientslikeme.com. It’s a site that I had set up my profile– which includes all of the details of my history with MS, the treatments and otherwise personal information that seems natural to share here. I would review the chats, being careful to steer clear of information that elicits anxiety. Sometimes I would make a comment, but mostly I would just read and listen to what people are saying. Hoping to add to my understanding of this diverse group of people that I am a part of.

So I set up a forum to inquire how people on plm prefer to get information about their MS. I explained what I’m doing and invited people to check it out and let me know what their experience learning on the internet is.

Imagine my surprise when I got this as a response:

“Please explain the reason for this post. I have looked at both sites and it is really confusing. I think the hmmmmmm is now what are you selling.”

“…..selling or smelling a rat?”

Ouch! Okay with further explanation the person retracted the “rat” comment… but that sure did hurt to read. I guess in these times one can’t help but to be wary of these types of things. I was in a bummer of a mood looking for a pick up when I signed back on the site. Hoping to see supportive comments and instead finding the contrary. It was unfortunate timing.

But it also was an opportunity to learn a lesson.. which I definitely have. In some ways it is like a code of honor. If you aren’t an active part of this group then it isn’t appropriate to speak to this group. Just being registered isn’t enough. The fact that I hadn’t yet posted much to the site was a red flag to the involved members that I am not one of their neighbors, and they have no reason to trust me. I get it. Now I’m chatting more, and blogging less. Hopefully it will balance out.

~

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MS SoftServe, off and running!

Yippee! A triumph over the endless digital dilemmas, web master Bonita has figured it out (as always) and the video that describes the staging ground of MS SoftServe is up on the site! www.mssoftserve.com It’s also on youtube in an abbreviated way. I hope this video will help to explain why MS SoftServe is needed, and how we can make it a reality.

So now I switch gears to copy writer and layout artist (with the support of familial experts ) to create a brochure to spread the word about MS SoftServe to potential sponsors. Awaiting the delivery of the legal documents to register with IRS and get my 501c3 number. Then the fundraising aspects of the site will be functional.

For all of you out there who have expressed support in making this site a reality, I’m assembling a list that I will use as evidence of need when I approach sponsors. This will also serve as a mailing list for important announcements. While your writing… take an opportunity to request something that you would like to see produced on the site. The way to make the most of this site is for it to be a “For us, By us” venture. Join me in its development!

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MS SoftServe Timeline 2

Bonita is finishing up the talking head film of me describing the need for MSSS and what the staging ground is all about. She’s tested and tweaked it in all the browsers and it should be up and running within a week. (she types with optimism)

I’m starting to work on the content information to provide to Pixel Corps so that they can start working on the flash animations for the different areas of the site. They will additionally work on some 3D graphics to spruce up the word heavy areas and tweak the films so they aren’t so choppy. Maybe we can do something like the story of stuff. Anyway… thanks to the brilliant guild style organization of PixelCorps- its a beautiful symbiotic relationship.