Tag Archives: multiple sclerosis

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MS Surveys- Do you participate? 1- not at all, 2-sometimes, 3- once a week…. 5- everyday

I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month)  – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS.  It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.

I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)*   And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).

But today was a little different. I didn’t mind  (as much) the labels or generalizations that I was forced to select.

It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).

*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!

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Smash Your Halloween Pumpkin for PWMS!

Challenge Accepted!

If you dumped a bucket of ice for the whole world to see, then contributed to the ALS association you were a part of a worldwide effort. Cos your contribution helped raise $115 million for that organization. That’s $95 million more than was raised last year for this cause.  And even if you didn’t make a direct donation, by spreading the word about this disease to others via social networking you were key to the best charitable effort ever.  Awareness is 90% of giving- because afterall you can’t know what you don’t know and you can’t support an organization for a condition that you didn’t know exists.

Stomp it out, smash it out, waaayyy out.

So let’s spread the word and raise a few dollars for what will be an important part of coping for people who are living with MS (and peeps who care about them).  MS SoftServe is a non-profit .org that will put learning and teaching about MS in the control of all of us who are living with it. It is a customizable learning website will lessen anxiety and empower us on new levels. Check out this link to learn more about MSSoftServe and this one to donate.

Why Halloween is the Perfect time for MS fundraising!

  • Orange is the color of the designated ribbon for MS
  • MS is sooo scary.
  • Stomping on a pumpkin to metaphorically stamp out MS is sooo satisfying!

Cut to the Cut Amy!

Many of us will carve a pumpkin and put it on our porch on  October 31st. But what to do with it on November 1st? Before it hits the trash or the compost heap why not smash it, video tape it and spread the word about this effort. Getting the word out about our effort is so important and a few donations wouldn’t hurt in getting us closer to our goal.

ms-ribbon-2 nevergiveuptattooribbon round pole peacelovehope

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Can Amy Come Out to Play?

hmmm… not so much…

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. (Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station –not watching it on the space station, watching it on YouTube. ) But for some of us, standing on the ground does not feel grounded. For some of us, the gravitational pull is enemy # 1 and for us just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

Chris Hadfield Space OddityI was commuting to NYU and tripping a lot. It was happening as a result of intermittent foot-drop and I cope(d) by cozying up with my good friend denial for as long as possible, in spite of what retrospectively seems glaringly obvious. Kissing the city sidewalk and the inability to find the horizon line was my repeat nemesis. Since that time, I went on SSDI (disability- I prefer to think of as this-ability) which made it very easy to stay in my pajamas and avoid leaving the house. An emotional stop sign now blocked all exits from my home. Not a warning to proceed with caution or the graphic using wiggly lines that suggest an issue ahead; No, this is a permanent STOP sign tangled-up with the scars on my brain that leaves little room for misinterpretation.

Full stop.

I spend a lot of time thinking about my disinterest in leaving the house. (Granted, I spend a lot of time thinking about what I’m feeling and thinking about why I’m thinking what I think. I’m all meta, all the time.) It makes sense that I’m apprehensive about stepping out the front door. The energy required to consider every single step while I’m trying to make sure that I don’t make the wrong move and end up on the ground, is often more than I can handle.

Over the years I’ve adjusted to the need for assistive devices. I carry a walking stick and at times I wear foot braces. But neither are the vertical guarantee. When I first got them, these “accessories” seemed like superheroes to me. They made me believe that they would stop gravity from its overzealous evil bidding. But it didn’t take long for their kryptonite to be exposed and with it my physical and emotional weaknesses.

• • •

On Monday I went to a meeting to plan the High Holiday Family Service (B’yachad) at a Temple member’s house. It’s one of those evenings that I know if I  get there, I will really enjoy it. This is an incredible group (mostly women… just saying!) and I usually leave with the feeling I am part of something bigger than myself. But in spite of that knowledge, I fought myself all day long. To go or not to go. My everyday question.

Fear is usually greater than the sum of its parts and so I broke it down, planning every literal step of the way. I’d been to this house. I knew the hurdles (steps without a hand-rail, not well lit) and so I set up preventative measures to reduce the risk of falling on my face. But even with these cautionary measures, I was still reluctant to go.

I called an “assistive friend” to give me a ride there and a shoulder to lean-on. As we ascended the stairs, it felt like Masada from the base camp, albeit only three steps. (I should mention here that I climbed Masada twice and even with MS it was less intimidating.) But I made it.  (yay me)

Hard to imagine I climbed Masada twice! 1985 (pre MS) and 2001 (with MS)

Even Masada has a banister! (albeit partial)

Unfortunately a three step descent was not so successful. A combination of unforeseeable circumstances played out and that last step was a doozy. I flailed for what seemed like an eternity and when I finally touched down, I hit the same spot on my knee that had been pre-seasoned by last week’s trip. Every muscle tightened as I recoiled in preparation for the inevitable impact. I was keenly aware that the flailing is more painful than the skinned knee and the feeling of out-of-control continues to sting.  I mean… geez! I pre-planned everything!

Where was I….she says rhetorically to her attention deficit. Oh yeah.

It was suddenly clear. Not because  the fear of leaving my house had been nagging at me for the last couple of years. Nor was it because this fall forced me to acknowledge that the changes (I hate the word “progression”. It makes it all seem predetermined) of my disease are  easily seen. I clearly need to upgrade to “Assistive Device 2.0” and I’m so scared that it’s not compatible with Amy OS8.

So I’ll reboot, throw out my denial- based -preferences and Google a Quad. (Can I still call it a stick? I hate the word cane!) And will just have to see how it goes.

So please ask me to coffee! If I’m brave enough I will meet you with the four-point-stick in hand, and for once be confident that the sound of my current assistive device falling to the ground will not be heard. My 2.0 will be able to stand on its own four feet. And thus, allow me to master my two and hopefully my relationship with gravity will be renewed. (C’mon Amy, give gravity another chance…. you may turn out to be your BFFs yet again.)

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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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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!

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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!)

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Destination Unknown

While you are in the midst of pre-holiday scramble, take a moment to read my latest essay on Health Central’s MS site. My seasonally non-specific December post will not only give you a break from the stress of the holiday prep crazies, but it will also put your life in to a comparative perspective that may be comforting at the time of year when we all take stock. But that’s just my speculation. Go decide for yourself.  And return to your previously scheduled “holiday crazy” with a new perspective~

Destination Unknown

If you are reading this post, chances are good that you’ve been diagnosed with MS and have your very own diagnostic tale; a “Where were you when you heard about Kennedy, Lennon, Cobain” story. It’s often the first exchange when two people with MS meet.  “Diagnosed, 1988, only took one week after my first symptom,” or “Diagnosed last year after a decade of unexplained symptoms and dismissive doctors.” No matter how our stories differ, that day puts us on the same train; the one with no clear destination or announcements along the way to keep our bearings. (more)

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This just in!

Health Central has produced some terrific Multiple Sclerosis videos over the years that are a must see.

And here is my contribution:

While you are there, check out the other offerings of the site. The conversations going on in the MS community are not only informative but are often soothing. It’s good to know that you are not the only one dealing with it.

Enjoy and spread the link. * Full discloser:

*This was a challenging shoot (4+ hours). I think I slept for 3 hours after all was said and done. Kudos to the camera man and the editors who made it seem like a smooth conversation!

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If You Can Dream: Learning to Thrive with Multiple Sclerosis

I recently met a documentary filmmaker named Emmett Williams. His friend Thy has been living with MS for two decades. They were having a conversation one day, about how few documentaries provide an in-depth look at what it’s like to live with MS. How can one  truly understand the MS experience with a few brief clips and short interviews. A film needs to show the intimate details of life with MS- from waking up to going to sleep and everything in between.

So, instead of lamenting that these film portraits of MS don’t exist, they are making one! How is that for proactive~

In Emmett’s words:

“If You Can Dream: Learning to Thrive with Multiple Sclerosis” will document the lives of  three people with MS — all with different variations, all at different points in their life. We will learn about their daily battles and triumphs, the importance of their support network, and the dreams they have for themselves and others who have been diagnosed with Multiple Sclerosis.*”

Once made, this film will bring its viewers closer to understanding of what it really means to live with this disease. This deeper look at life with MS, will help people better understand the variable nature of Multiple Sclerosis. Speaking as a person who has been living with it for 23 years- I  love the idea of a larger community who “gets it!”

Check out the website and watch the work in progress. If it is meaningful to you, consider making a donation. No matter the size every little bit gets this film closer to the proverbial can.

~Amy

*If You Can Dream will donate 25% of everything contributed over $10,000 to MS charities and 50% from any earnings after the film is finished.

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Surfacing~

I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)