De-marcation of De- myelination!

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 we heard John Lennon was shot, (7th grade listening to the radio before school), and Kurt Cobain took his life. (At a bagel shop in Orlando visiting my sweet Linda for that last wedding dress fitting) These are the push-pins on the map of our lives that we reference in all the years that follow. Who we were, who we are and what will we be. 

 •  •  •

As you probably picked up, I’m the girl. Born in 1968, diagnosed with MS in 1988 and turning 46 on June 21st.  (ie.today) As many of my 40+ peeps know, time moves a lot quicker when you’re older. (Haven’t they figured out how to fix that yet?)  And our memory is so sharp for those long ago insignificant moments (insert tragic high school experience here) – but last week is a total blur. (In spite of that supplement of … what’s it called?, Oh yeah… Gingko Biloba!)

 Okay Amy. Stay on target.

 The anniversary of my MS diagnosis- (way back when I was a 20-year-old film student in Baltimore) is celebrated yearly. And okay, it just happens to be my birthday… so some sort of celebration is a given- but that’s not what its about for me. It’s the demarcation of “I’ve struggled, I’ve endured and I’ve come out of it with a more meaningful life than I would have had I not been branded with these two letters.” Not that I would know the alternative- but it’s a great spin, dontcha think? But it wasn’t u 2005 that I embarked on my life mission: to make MSSoftServe a reality. The epiphany that changed the way I felt about my future, my past and my diagnosis. 

It’s easy to remember how scary it was to be diagnosed with MS when no one knew much about it, there was no way of connecting to others who have MS (imagine that!) and no FDA approved drugs to treat the disease. But even in this digital age of connectivity MS is still scary and not just for the newly diagnosed. MSSoftServe will put the power to the people- so that they can learn without fear and teach with confidence. (for more specifics go to mssoftserve.org and watch some videos!)

As this longest day of the year approaches I am spreading the good word about MSSoftServe and it’s progress. We have raised money from individual donations, from grant awards and corporate giving programs. We’ve utilized those funds to hire a development director (at a very discounted rate) who has put together our strategic plan, produce the get-the-word-out-fundraising site and the PR that will let the people know what we need, what we want and how we want it.  With the guidance of our stellar board of directors- we expect to have the site production in full swing at by the end of this year.  And while we continue the work to make it happen- we need your support to get us to the diving board we are about to jump off.

 So celebrate this birthday anniversary and give $10 (ie. a coffee date) to a cause that will make a difference for the 350,000 people diagnosed with MS in the United States and all the other peeps who care about them. Because you will be a part of the movement to change how we learn about chronic illness on the Internet in an empowering way.

Now tell me, in a rhetorical sorta way, how good is that Karma bump!?

Thanks for reading, supporting and encouraging. :)

• • •

BTW, $46 is a significant number (I’m turning that) $26 (I’ve endured that) or $16 because that rounds out the three suggestions in a neat way. Just saying! ;)  

Oh, and one more thing- Make MSSoftServe (officially SoftServe Matters) your favorite 501c3 and Amazon.com will donate a percentage of each purchase! The gift of giving and getting in one click! :)

C’mon, Jump In. The Water is Fine.

aglol:

An MSSoftServe update, We need your opinion and musings on water in my face.

Originally posted on MS SoftServe - on the cutting edge:

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…

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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 because I too am soaking in this overwhelm, that I find it really hard to write and spread the word about MS SoftServe. I mean, does anyone out there read beyond a headline and the first two paragraphs?  Is everyone like me – a Scanning Queen? (Replete with Abba harmonies). Please prove me paranoid as I push myself away from the wall and on to the dance floor. (and don’t make me do it alone!)

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 that 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 amessage 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 onmssoftserve’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!

Originally posted on MS SoftServe - on the cutting edge:

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:…

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Here We-Go Again! How Can It Be 3 Years?

I’m hitting the halfway mark between 45 and 46 and I’m saying all the things that old people say.  “Where does the time go?” and “You’re just out of kindergarten, how can you be wearing my shoes?” and the oh-so-popular “When I was your age we didn’t have an i-anything!”

Like everyone at this this point in life our brains have aged in that area that turns the endless summer vacation into only a week and the thing that happened 10 years ago, into last year. Where am I going with this??

Oh, yeah.

It’s that time again! WegoHealth is embarking on its third annual awards program for health activists! That’s right third! It seems like they were in diapers just a few minutes ago and now they are celebrating their third birthday!

If you haven’t been introduced to WegoHealth, please allow me. Wego strengthens health activists by connecting them to the people they are reaching out to. Or as they put it: WEGO Health is a platform for committed health advocates to foster new relationships, gain access to helpful resources, and to grow their communities. Kinda the same thing, right?

If you aren’t sure that you or someone you know is a health activist- check out these quotes. If they apply to someone who is succeeding in any of the many award categories- NOMINATE them. It’s pretty much a big thank-you-hug in the form of digital awards. It’s the least you can do to express your gratitude. And their new design for the nomination is sleek and cool. Just check out these logos. Attractive right?

So, if you’re nodding your head thinking about a person who deserves this recognition and you want to make their day. Nominate, Nominate, Nominate.  It will feels sooooo good. Trust me, I’ve nominated many a deserving person, and the warm fuzzies last all week!

Thanks for reading and for nominating that special someone you’ve come to rely on. You’ll be glad you did.

xo amy g.

bestinblog community-1 geek-1 instagramwegofacebook1 keptsecret youtube

 
 
 
*Although one’s perception of time is not associated with a specific sensory system, psychologists and neuroscientists suggest that humans do have a system governing the perception of time.[2] It is composed of a highly distributed system involving the cerebral cortex, cerebellum and basal ganglia[citation needed]. One particular component, the suprachiasmatic nucleus, is responsible for the circadian (or daily) rhythm, while other cell clusters appear to be capable of shorter-range (ultradian) timekeeping[citation needed].

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.

Find Me In Fatigue

aglol:

I sitting here with 7 other people with MS at Kessler’s MS Wellness program talking about MS fatigue and reflected (in my head) on this post…

Originally posted on MS~LOL: Multiple Sclerosis a Life Of Learning:

Fatigue is hands down the most difficult MS symptom to experience and explain. While all invisible symptoms defy description, finding words to convey the feeling of this type of exhaustion is not easy. Because everyone thinks they understand “being tired,” it is particularly helpful to draw a line of distinction between that and this experience. So I will try to do that… words are my greatest ally, after all.

When I was first diagnosed in 1988, long before any disease modifying drugs were available to treat MS, I knew full-on fatigue. This neurological experience isn’t anything like being tired. It consumes you in its grip. It’s long fingers wrap around you and suffocate your being- robbing you of your sense-of-self. Each and every cell struggles to endure and with that, is a disconnect from all that defines you. It lives in you no matter what you do…

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Shhhh! Did you hear? There is an MS SoftServe update!

Just to be fair, I thought I should let one blog know what the other is doing. And the other is all MS SoftServe… not all Amy musings. Come to think of it, it’s Amy musings about MSSoftServe. (Hopefully you know what MS SoftServe is- or this will merely be evidence of  a mind long lost!)

So, in my ongoing effort to prevent sibling rivalry- I ask that you please check out mssoftserve.wordpress.com.

I’d rather not split them up again. Last time was a nightmare! You know how it goes- one starts pulling the other’s hair and then there’s biting… oh wait. That’s me and my sister in the early 80s … Sigh. Just read the blog(s)!

Here WeGo: Who Deserves Awards!

So tell me, are you a Health Activist? I bet you are going left and right with your head right now. But I think, there is a good chance you are wrong. So if I get you going up and down with that noggin, please check out Wego Health. They are all about empowering health activists. (ie. helping us, to help other peeps like us.)

Not convinced? Let’s go to the dictionary, shall we?

Ac•tiv•ist  1. An especially active, vigorous advocate of a cause.

I know what you’re thinking. That you have no interest in yelling about individual rites; you’ve never marched with a picket sign and sometimes you look askance at those people who remain in a public space to make a point. And forget about the whole “hunger strike” thing. And the words Active and Vigorous are not exactly the go-to words used when describing life with MS… But activists take on many different forms.

I’ve developed this handy check-list to help you figure this out.

  1. Are you very involved in an online MS community?
  2. Do you visit your blog, the MS board and/or your facebook page with such regularity that you always hear the distant call of people you love pleading for your attention? “Umm…honey, you said 10 more minutes 25 minutes ago!”
  3. Do you find yourself unable to sleep because you are concerned about the well being of someone you met online who is struggling with her/his new diagnosis or symptom?

If you were nodding as you read any of these statements, then you my friend, are a health activist. You are a person who is trying to make change, a change that will make a difference for all of us living with Multiple Sclerosis. And that change can be as simple as making someone feel better about their challenges, or making a person laugh at something they couldn’t before. Maybe you are someone who provides a valuable resource of up to date information about MS. Or you are someone who helps as a mentor to the newly diagnosed. There are so many ways to take an active role in the MS community and Wego is here to make our role even easier. They’ve added adrenalin to my commitment, my passion and my efforts to help the MS Community. (After all, I’m not only an MS activist; I’m also a member!)

So, now you know who you are. And you also know who Wego Health is.  And your timing is impeccable. Because right now- Wego Health is awarding health activists who are making a difference. If you or someone important to you fits in to the categories listed nominate them. And while you’re at it- spread the word and get more people thinking about it.

Check out his link to learn more about the award program. Think hard about who makes a difference in your online MS experience. Then nominate them. And if you think you fit the role- feel free to nominate yourself.  Here is the handy dandy link that will allow you to start nominating!