Category Archives: MS Diary

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Everything Old is New Again!

My New Neuro,  New Assistive Device, New Continence and My Old MS ! (oh, they grow up so quickly!)

So, in February I started seeing a new neurologist. I’ve had MS 28 years and was in the care of an MS specialist since I returned to NJ  from Miami in 1996. (How is that 20 years ago??) Anyway. I lean toward separation anxiety so making the change to NJ from NYC took longer than it should have. But I forged ahead with recommendations from my MS peeps on Facebook and made an appt to see  Dr. Ilya Kister at the MS Center ala St. Barnabas in Livingston, NJ.  It turns out that hitting the reset button and having a new perspective on my old MS has been invigorating! (and that’s not a word a person with MS utters often)

Oh Botox, I had no idea how much I’d love you!

I had no idea that Botox did more than smooth out one’s vanity. Turns out that the firming paralysis that puffs-up the lips or fleshes-out forehead wrinkles has all sorts of health benefits including calming an overly enthusiastic bladder.

As long as I’ve had MS (since I was 20) and have had both-ends-of-the-stick on the neurogenic bladder spectrum. Can’t hold it- can’t go.   (So glad match.com didn’t exist in 1988… ain’t no way to casually work that in to a profile!)

Apparently an injection of Botox into the bladder (or 20-30 of them) calms the hyperactivity of said organ. For those of you who are crossing your legs as you read, it wasn’t that bad. For those of you who don’t care what I say about it not being bad, there is a buffet of anesthesia to choose from. 🙂

For the first time in 25 years I do not spend most of my day in the bathroom. And I don’t have to create a google map for all bathrooms in a 5 block radius of my global positioning. I can’t begin to tell you how liberating it is. When asked  if I feel normal again, I can safely say no. What was normal for me is exactly what I don’t want to be.

My bladder looks 25 years younger and I’m a new woman. 🙂

My foot dropped down, and then got up again

I’ve been tripping on my foot for a crazy long time. I’ve blogged about it a ton (click). I tripped and I’ve fallen in full-frontal denial.  There was always an invisible sidewalk obstacle that got in my way. A few years ago I rejoiced when I learned about a new assistive device that would take falling off my daily-to-do list. Finally, I would be able to leave my house and not be scared that every step would be my last vertical one. But that didn’t turn out to be the case. When I tripped and fell anyway, it felt downright stupid. All the efforts to incorporate these braces into my life were for naught. Sometimes my endless-optimism bites me in the butt.

I had heard about the Bioness L300 electrical-stimulation-thing that sends a signal, that activates a muscle, that picks up your foot. This, unlike the walk-on braces, made foot lifting certain. But somehow I got it in my head that since I have intermittent foot-drop on both of my feet,  it would be overkill to have that type of device. Oh, and then there’s the fact that it’s outrageously expensive, insurance doesn’t cover it, and.. and..and. (insert ongoing list of why it wouldn’t work for me)

But when Dr. Kister mentioned it, I reconsidered. And with my husband’s constant clarity and ability to keep me grounded in potential, (grounded being the operative word!) I figured I go through all the steps to see if it would work for me and that if it does  we will find a way to make it happen. And while we don’t know we’ll afford it, I do know that we will find a way to make it so.  And thus the idea of leaving the house might not be so threatening in the not too distant future.  (Circle back to optimism!)

So in summary:

Botox (✓).

Bioness L300 (✓)
(in theory at least!)

 

A new professional prospective (priceless!)

And everything old is new again~

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(de) liberate

every step is (must be) deliberate
an intermittent foot is dropped-
unpredictably

each position of my foot
(think: lead with the heel)

deliberate -heel- step
deliberate – heel- step
deliberate – heel- step

tripping expected
-yet shocking
(stay on familiar floors)

the door saddle- a schoolyard bully
a leg always sticks out and
–brings me down

(is it safe?
is it safe?)

deliberate is demanding
intension is hopeful

intend-heel-step
intend-heel-step
intention– heal- heal

5776
I lead with intention

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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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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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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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Stress Begets Stress Begets Stress when living with MS

Isn’t it annoying that stress has a negative impact on our health? I mean if we’re already dealing with emotional and mental strain, we clearly need endorphins not ulcers! Why isn’t there an immuno-modifier that can address this issue? And since we’re talking about lacking immune systems, let’s talk about stress and MS, because that combination is truly unjust. When you have stress and MS, it begets more stress and more MS, leading to even more stress and more MS! I pause to throw a dirty look at who or what ever is behind that serious misjudgment in human design…

(Want more? Click!)

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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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Try to Remember~

When I took my daughter to her first singing lesson it all came rushing back. As she moved through her warm up scales, I leafed through the sheet music she had selected. For her, the songs of Wicked were a no brainer; she had just learned them at her theater camp this past summer and she already knew the words. Singing show tunes after scales was not something I had to Try (hard) to Remember. While watching her I remembered me- the pre-MS me- and “this ability” that didn’t change after my diagnosis.  It was here all along.

When I was a girl the music of Broadway was always vibrating through those cheesy fabric speakers on the console that sat on our green shag rug and took up no less than 6 feet of horizontal space. My parents loved this music and they played the albums until the grooves wore out. (For those of you under 30, that is a reference to the vinyl discs from olden times.) This comes as no surprise being that my mom’s dad (GP Aaron) was smitten with the musical and my mom grew listening to the  score that I knew so well.

Pippin, A Chorus Line and The Fantasticks were the soundtrack of my childhood. My sister and I knew all the words to all the songs and danced around the living room singing them at the top of our lungs. Though we only went to a handful of Broadway shows (A Chorus Line, Annie, La Cage aux Folles and of course Cats) that music was the fiber of my original family. And to this day my sister and I will break into song when a word prompts us, much to our husbands’ chagrin. 😉

In addition to a love of music those shows taught me some very valuable lessons. The first and perhaps most timely, was from A Chorus Line. “Hello 12, Hello 13, Hello Love” was a great conversation starter about the facts every pre-teen wants to know but is afraid to ask. La Cage introduced me to transvestism, an understanding made more complete a few years later when I saw Rocky Horror Picture Show. (Also a musical!) I recited the poetry of TS Eliot to a tune and learned about the travesty of war diluted by dance and song. And I’ll always remember the tiny play in a tiny theater on Sullivan Street where I found an instruction manual for sneaking around your parents to be with that first love. (Now that one really spoke to me!)

In spite of my compromised self image I continued to enjoy singing in the years that followed. When I entered high school, I immediately joined the choir and a year later auditioned successfully for both the acappella and treble groups. Of course by this age I could no longer find the reckless abandon that my living room afforded me. I was firmly positioned at level-8 on the insecurity scale of 1 to 10 [10 being most insecure :)]. And even acceptance into these advanced choirs didn’t help me feel more self-assured. So I took singing lessons hoping to find confidence. Clearly the issue would more likely have been resolved on a the couch and not next to a piano. Wow, I hadn’t considered that self-esteem indicator until I wrote these words. (note to self: call therapist!)

It wasn’t until I moved out of my house that I realized that not everyone grew up with a love of Broadway musicals. It’s funny how that works. We take for granted what we were raised with, assuming it’s standard fare. It was never more evident than when I was hanging out with college friends and after someone said “One” I launched into a very loud “….singular sensation, every little step…”  (crickets) Not the harmonic response I had expected. Just a silence filled with the wide-eyed looks and lifted eyebrows punctuated by an “alrighty then.” But all the while I could hear Grandpa Aaron singing in my ear; a voice of approval for this mutual love that he passed down to his daughter and she to hers.

In the 22 years that followed I never thought of singing again. Not once. Maybe it was because I was distracted by my MS can’t-do-list which was growing and after all, singing never held a strong position on my can-do- list.

But recently, I’ve learned that I can do more “performance” than I could even have imagined. I now host an MS radio show, write a blog and am the outspoken founder of the non-profit, MS SoftServe. Once its live it will be the first individualized learning website that grew out of the Master’s degree I never thought I was smart enough to get. Ironically, with MS I have found an expertise that has ultimately given me a confidence I never knew possible. And it only took me 23 years to get to here. 😉

Madeline and I are sharing our lessons. Every week we sit in the spotlight of a tiny room with carpet on the walls; singing a song that doesn’t require a stabilizing arm, a walking stick or the ability to be balanced. And my limitations are left outside the soundproof door.

Finding my voice as 42 year-old woman, living within the restrictions of MS for over two decades, is empowering.  I’m no longer afraid to get up in front of that audience and I have finally found, that something special that Madeline and I can share; one that doesn’t ask more of me than I can handle. And wouldn’t you know it- it was there all along. After all of these years I can now see that I am the “one” I’ve always sang about in a song that transcends time.

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I Can’t Wait ’till My Colonoscopy!

A month ago I started experiencing a problem that had nothing to do with MS and I can’t even tell you how exciting that is. I generally steer clear of scatological talk (cause lets face it, it’s disgusting!) but for the sake of this discussion I must explain that my “problem” brings to mind a Niagara Falls metaphor.

Having symptoms that change as fast as Facebook status updates, I’m very aware of what I feel when and for how long. After five days with this unfortunate experience, I went to my GP. She sent me for blood tests and x-rays and then to a gastroenterologist who sent me for a cat scan, and now I have a colonoscopy on the calendar. Apparently I have “mild, non-specific swelling in the lymph nodes of my abdomen and groin” (isn’t groin an unpleasant word…kinda like spleen or bile). So I’m curious what is wrong and hope that it has something to do with my abdomen sporting the pregnant-chic look; but the investigation and not knowing doesn’t faze me. Being poked, prodded, tested and schlepping all over town for the right specialist to bring test results for reassessment isn’t foreign to me. And I have no doubt I will be fine. But the surprising part of this experience isn’t the blasé optimism I’ve so easily found. No. The part of this that has me sitting with my jaw slack-and-agape is that this is the first time in my adult life that I’ve had a health concern that isn’t MS related.

As a woman who has been living with this “nobody knows why” disease, I have learned to accept what is, and not throw my hands up in the air with every new symptom. But look at me now! I have films and digital renderings that correlate with my symptoms. Did you follow that? I have symptoms that actually reflect what is going on in my body. Look! It’s here, here and here on my catscan! This is a totally new experience for me. MS is an amorphous disease. It’s often hard to describe a symptom and it can’t be pinpointed on a scan. While MRIs are an amazing diagnostic tool, they don’t provide a map to the symptoms that impede my ability to function everyday. No one looks at my annual MRI and says “Hey, this scar here is why you can’t walk far; this one is why you are incontinent and have regular bouts of pain and this is the pesky little guy that makes you dizzy all the time.”

So, here I am, reclining on my flexible office chair with my hands behind my head, smiling. Of course I can deal with this. It is actually fun. But in the midst of this bliss I find myself glancing around to make sure no one is looking at me; sitting with the sad, pointless speculation of what my life could have been had this been my first major health issue. Of course I shake it off and look to the more positive aspects of being me, while trying not to lament my summer reality that I can’t really leave the house unless it becomes unseasonably cool, that I’ve been taking so many medications for the last two decades that I have to carry around those little plastic reminder cases and that I struggle with the fear of the unpredictability of doing errands alone.

I take a moment to mourn this loss and then I go back to the bliss of a health problem that will very likely be resolved. And while I’m there I breakout the list of things that make my life full and fabulous. Cause lucky me! I got a bunch of those. And at this moment, the best part is that I will count down the days until my colonoscopy when I will likely learn exactly what is wrong with me and how to fix it.

I am so excited.