Tag Archives: Living with MS

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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.

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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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MSLOL Radio- Humor Me! Finding the funny while living with MS

On Wednesday October 19th at 8pm (EST) we will disclose a mostly unknown, un-adverstised treatment for MS that has no side effects, no co-pays and can be taken every day, all day with no possibility of addiction. Hmm…that may not be true. Let’s just say that any addictive state can be legally and safely fulfilled.

It’s all about finding and using humor to cope… But you knew that didn’t you. I mean… you read the title!  Join us at 8pm on Wednesday to hear the accounts of 5 armchair comedians who have MS and can’t cope without it, and two professional stand-up comedians living with MS who make us laugh about it even when they/we can’t stand up. We’ll hear from Jonathan Katz (of Dr. Katz, Professional Therapist fame) and British comedian Jim Sweeney (of The Comedy Store and Whose line is it Anyway, fame.)  Check out the Jonathan Katz interview with Trevis Gleason on EverydayHealth.com and Jim’s one man show My MS and Me. Both will help you find a spin on the most challenging of MS experiences that will likely have you nodding and laughing throughout.

Jim Sweeney, Improvisationalist Comedian with MS

MY MS and ME with Jim Sweeney

Dr Katz, Professional Therapist whose not a therapist, but does have MS

Dr. Katz: Professional Therapist

So, here it is once again (For me and MS cog fog peeps- repetition can be helpful me thinks. Granted cutting and pasting in iCal email alerts is even more helpful!)

Humor Me: Wednesday October 19th at 8pm (EST)
Use our new toll free number: (877) 774-3194
or listen on line at Blog Talk Radio …Oh, and while you’re there… hit that “follow” button, it’s the blue one with the word “follow” on it. This way you will be in the know and impress those of us who can’t remember anything!

Are you looking for that show you loved, the one from earlier this year?  Click here, and feel free to lather, rinse repeat!

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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?)

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Simulated Volatility~

For the last 5 days, I’ve been on a journey with a synthetic guide. I’ve taken this trip numerous times, but each one is different –The start, the course, the destination- all unknown. What is known is that where I was before I opened my vein was not a place to stay. The limitations were too great. These setbacks, albeit periodic have their own frightening rhythm. Is this moving toward a dramatic crescendo that will change my symphony of coping?

Tuning up the intravenous, all instruments at the ready, I succumb to an unknown melody. I tip back my head and close my eyes, hoping the song I’m looking for is part of the evening’s program.  And with a rush of anxiety the pic opens my vein and the first chord is strummed, falling to a silence that ends with a surprising lyric. And I wonder. Am I at the right performance?

Hooking the pump to my picc line I feel the cool fluid join with mine and for one hour I wait and wonder. Will I be hyper, hungry, agitated, energized, erratic, accelerated, overdriven, unable to rest, sleep, will I find the way to be me? I continue humming the tune that defies interpretation with in my limitation. When it’s gone- from my veins, my body, my mind and song, will I crash silently for an undetermined refrain? Or will I sing better than before, hitting notes not reached in years, when my voice was young and fresh, chords unscarred. With this synthesizer of health, I remember that person found in expected scenes, from performances long over- and as the volume increases I cover my face, plug my ears, refusing to hear, to listen. I won’t get lost; I can’t get caught happily singing, when ultimately I am stuck in the cacophony of what can never be again.

And as the show is ending, a scream erupts from the audience praying for an encore that won’t likely come. One last thunderous request is launched toward the silent stage, and the lights turn on and everyone gets up to go, except for that 20-year old girl. Whose hoping for a surprising finish- an unexpected, long and sweet tone that only she can hear.  But even before that moment, the theater sits in silence and she can hear whispers from back stage. She knows she must get up, turn around and slowly walk up the long silent stairs with her stick in hand. Hoping that whatever she finds when the drugs are gone, will be the familiar melody she sings silently in her head. Reclaiming that song that will carry her through the uncertainty of her future, of how she responds to every note to come no matter what the underscore. One that will bring the new phrasing of a self not forgotten and an important new measure to her composition. And without this guided journey, this opening of her vein, heart and mind, she would not have otherwise known it to be worth a listen.

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Unexpected Healing- or how M&M’s can make anything easier to swallow

A week ago I accompanied a good friend to a doctor’s appointment. I’ve known her for exactly 8 years 7 months and a week. I don’t usually keep such close record of when I connect with friends but we have a timer that evolves before our eyes, reminding us of when we met. Her son was born in the same hospital a week before Madeline and we did our new mommy class together. I was going through a very difficult post-partum-oh-my-god-how-will-I-care-for my-new-baby-when-I-have-MS thing. Challenging times at best. And when I walked in the room on the second week of class I immediately felt that she would be a good person to get to know… kinda like you know a good melon. 😉 My instincts proved true and we’ve been friends since. With our husbands, we enjoy a lot of common ground. We are all in education and thus have similar interests. Of course we also enjoy marveling at how much our kids have grown since we first met, when they were little more than cute, high maintenance blobs in a carrying basket. And over the years since, though distracted by life’s happenings, we found time to connect once or twice a year. Considering how time moves when you’re distracted by your child , it seemed frequent.

Two weeks ago we gained more common ground. Linda (she’s my other Linda, btw) called to tell me that her doctor thinks she may have MS. I was stunned. I tried to keep it together to be positive and helpful when we shared this conversation. I spend so much time thinking and talking about what newly diagnosed people need and it all fell to the ground when this good friend came to me. How can she have MS!!

Linda and her husband have always been very supportive of my efforts and challenges. They’re the kind of people that are sincerely listening when you talk to them. (Awesome eye-contact… I’m sure you know the type!) And it made them stand out as friends. So, I repeat, how can this be? I replayed the tape of our friendship, highlighting the caring moments and discussions about my MS. And like that moment in a movie when the plot comes to a screeching halt and nothing is what you thought it was and you have to watch it again from the beginning with your new knowledge (The Sixth Sense or The Usual Suspects come to mind.) I went back and looked at our friendship over these years with the new perspective; knowing we would come to this point. And ultimately, I’m back at the same point. It’s just bizarre! I’ve become close friends with many people who have MS over the years. Introduced to them because of our commonality. But this is the first time a good friend of mine has been diagnosed with MS and it seems like a freak occurrence. It got me thinking about where I was when I was in her place.

Everything was different when I was diagnosed. As a 20-year old college girl, nothing in my life was permanent. I struggled with the question marks of what my future would hold, a fear that sits on everyone’s diagnostic examining table. The big difference is that I had no stability. Nothing was permanent and in experiencing this with Linda, I found comfort in the place she is today. With her husband and kids, her career and identity, she is well established. She has a wonderful support network to help her navigate this. And while she has the strength of character to get through it on her own, she also has much more than I knew in 1988. As the anxiety wells up in me, her place in life brings me relief.

Going through this experience with her, I feel good about the comparison. I want to support her through it, in ways that weren’t available to me, to be that reassuring person I didn’t know. And there is something reparative for me in that role. It’s a great time to come home with this diagnosis. There are so many treatment options, so much hope. She will begin treating the “MS” immediately; she’ll hit the ground running. With all the anxiety and uncertainty, this is truly something to feel good about. And I hope ours is a comparison that helps her, makes her recognize all that she has.  And together we can have the “Damn, that must have sucked for you!” moment.

She invited me to come with her to her new neurologist to confirm her diagnosis. It was a very powerful experience. There were many things rushing through my brain, dodging the scars, while I tried to be present for her. We managed to bring laughter to the day in spite of the obvious emotional drag to the contrary. At one point, during the familiar exam her neurologist had noticed that her one leg was weaker than the other. She wondered whether he was pushing too hard on her leg. So he turned to me for a baseline. We laughed as I told him my deal. And his response was, “ Great, you have had MS for 21 years and you would never know.” Then he noted my stick propped up in the corner. And I wondered, am I an encouraging example for Linda or a frightening one? So we left and drove right to the local CVS and picked up some M&M chasers. This is a very important part of any diagnostic experience. And there are no side effects if you practice moderation… not that we did, just saying . 😉

Quite frankly I was excited to have an MS pal. (Though I tried to keep that to myself!) While I wouldn’t wish this on anyone, I can’t help but to appreciate having someone who is already a good friend to share this experience. It makes my two decades with this disease more valuable knowing that I can use it to help Linda. And the truth is, I can heal the parts of myself that have a 21-year old hurt from the time I went through this alone, not knowing about the healing properties of M&Ms.  😉

In this introspective time (seriously, all times are introspective for me!) I reread a comment she made on my blog back in October, in response to “this-ability.”

Amy, I am a firm believer that everything happens for a reason – even if you don’t know what it is right away. It seems, though, that you were able to figure this one out quickly. And, now you are able to enjoy the parts of your life that mean the most, (without feeling guilty about falling asleep during a bedtime book.)
I am always inspired by you. Enjoy this time
~ Linda (the other one)

Because I have lived my entire adult life with MS, I have grown in ways that I wouldn’t have otherwise. I’ve seen this familiar strength and resilience in everyone I have met who endures this challenge. Looking back at Linda’s words, I know that she has that strength already and that she will do well no matter what her future holds. So Linda, text me if you need me. I will always drive over with all your favorite M&Ms. (Did you know they have coconut now? Life is rich, isn’t it?)

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Hear the voice behind the words~

I was recently interviewed on blogradio by Rae Edwards of SwaggahBoi RaeDio. Please take an opportunity to listen. Put it on your ipod to hear while you commute… mill about… eat … sleep… think. Wherever it fits!