C’mon, Jump In. The Water is Fine.

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

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…

View original post 499 more words

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!

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:…

View original post 644 more words

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

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…

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…

View original post 969 more words

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!

London Calling: How I Learned to Stop Worrying and Love (the) Gigi!

I went to Europe. Really. I did. I never thought it would happen. I mean, with our enormous student loan debt we never have extra money for luxuries such as a vacation. But lucky me! I’m the granddaughter of Beatrice Goldstein Kaplan. She came to America in the 40s and left all of her wonderful family in London for us to play with.  And as a result we are in no short supply of fabulous British cousins always telling us about their comfie spare rooms and how nice we will look in them. But without tickets to get across the pond it didn’t even seem worth thinking twice about.  So when the opportunity came up to think twice, I realized that money wasn’t the only reason I resisted thinking twice.  No, the money (or lack there of) was a helpful way to avoid the other reason for not considering this vacation. That being the one that hides underneath every moment when living with an incurable, unpredictable, potentially progressive disease.

About 3 years ago, my 20+ year old MS started acting out beyond it’s normal behavioral issues. Symptoms heightened and I shortened. (And I’m only 5’2″- so I don’t have much to work with here!) Over these past years I’ve been challenged by constant dizziness, greater limitation in my ability to walk and worse of all, an inability to stand for lengths of time. Like- for example- long enough to cook dinner. But as all of us with MS do- I found new ways to cope. Not-to-say that any of it is easy. These changes are always emotional ones. But when all is said-and-done, I have found a way to live within my limits-de-jour. So long as my expectations of the day are low and I have the “bright-side” handy when I need to break it out, – I can deal.  Sorry I left the kitchen such a mess honey…you know….i have MS 😉

So when the possibility of venturing across the pond became a reality I went in to high-gear worry. I would have to come out of hiding and face the fact that I am now “it.”

Not long after our tickets were booked we started realizing that we have other close connections on the mainland. (that being Europe) Our lovely former neighbors moved to Berlin and our friend knew someone who has a great place to stay in Paris. Now how could we possibly make that voyage and not take advantage of these opportunities. But in the back of my head I’m thinking, If we don’t do it now we may not have the option when I’m less able. Oh wait. Not when; should I become less able. (Phew! Found that bit optimism in my back pocket!)

And though my adorable college professor husband doesn’t earn the big bucks (“even though we aint got money“) we do have summer vacations! So we reserved August for what we hoped would be an amazing trip.  And it was all that; for reasons planned and unplanned, expected and unexpected. And I learned a lot more than the detailed history of the Berlin-Wall falling or how something called a Shandy is a great way to experience an English Pub with an actual beer product in hand.

* * *

Tune in next time for the second episode in the series “London Calling or How I stopped worrying and love GiGi” when I will discuss my experience with MS, accessibility in Europe and my new love for GiGi – replete with photos evidence for all of the afore mentioned.!

(BTW: If you subscribe to this blog- you will be notified of when that happens. I’m thinking this weekend.. but who knows!)

July 4th 2009 was so significant to me- July 4 2012 we even more so!

MS~LOL: Multiple Sclerosis a Life Of Learning

For the past 20 years, the 4th of July has been all about dependence for me. While the nation celebrates its independence in the stifling heat of July, I’m inside. Like so many who live with Multiple Sclerosis– heat is my dictator, my oppressor, my King of England. And while the summer holds many days that are challenging, the irony of summer’s opening holiday leaving me reliant is a wound that never quite heals. I know that whatever the invitation is, chances are good that it won’t be an option for me. So I sit in my air-conditioned room searching for alternatives on this day of independence, working hard to accept the parameters of my dependence on the arm or the stick that supports me through life.

For the past few years I have found the emotional fortitude to watch my daughter in the town parade. Sitting on the chairs…

View original post 606 more words