#7 "The Truth about Mobility"

It IS everything it's cracked up to be! Getting from point A to point B is a huge part of life. Most people don't really think about it at all (unless you're 92 and someone is threatening to take your license away from you). But for the rest of us, it's just a question of which transportation to use.
Feet: great for your heart, cheap, no need to find the keys, easy to daydream or browse along the way, really good for getting around your house and yard or over to the neighbor's for whatever.
Bike: fun, also cheap, refreshing if it's a nice day, good for the environment.
Car: Ok admit it. Everyone should own a car. (Ok ok. Maybe not in NYC or SanFran but just about everywhere else.) Go to work, pick up the dry cleaning, groceries, meet friends for..., and maybe best of all--shop! "When the going gets tough, the tough go shopping."

So when my feet wouldn't take me, the bike tipped over and the State wouldn't renew my license, I developed a serious case of stay at home blues. One day, at an MS Society annual meeting, a woman sitting at my table stood, stepped on her Segway, and in a flash left the room. EUREKA, I thought. I gotta have one of those things! And I will be forever in Wendy's debt for showing it to me. Everyone with MS should have one! This is AWESOME! Three short weeks later I was proudly zooming around my neighborhood on my "man-magnet."

Advice to all women (physically challenged or not): Want to attract male attention? Buy a Segway. Guys are drawn to them like big flat-screen TVs.

For more than 5 years it has taken me on all sorts of adventures including to the mountains in Mexico where I bumped along narrow sidewalks or cobblestone streets to the astonishment of onlookers (including the local police who took several days to decide it did not belong on sidewalks and banished me to the streets.)

But being a trail blazer has challenges. Many officials in gov't and business prefer the status quo. So within weeks of discovering the segway, I also discovered the slimy underbelly of discrimination.

"Discrimination. Discrimination is the active denial of desired goals from a category of persons. A category can be based on sex, ethnicity, nationality, religion, language, or class. More recently, disadvantaged groups now also include those based on gender, age, and physical disabilities."

Who would have thought!?

Wouldn't everyone be happy to see a disabled person cleverly disguised as able-bodied? Happily going about their business? Hmmmm. Maybe not.

More pics from San Miguel de Allende, Mexico--
beautiful but not too accessible. Some days I stayed behind in our gorgeous rented house while the rest went out exploring. Even with the Segway, hills and cobblestones can be a bit tiring--but oh so much fun and oh so worth the trip!

#6 "Better Living through Chemistry"

I grew up in the '50s. I believed in science--still do. I fact I am such a believer in science that I wait excitedly for the next great discovery--the cure for cancer, diabetes, alzheimers and yes MS will be discovered soon. But soon is a relative term...if you are sitting in the back seat of the family car waiting to arrive at Grandma's house...soon can seem like a very long time.

You get the picture. It's simply not soon enough. So while I was waiting around for the cure to materialize--soon--I opted for the next best thing: slow it down! That way when they find a cure, not too much damage will be done.

But before I could start any treatment, I had to confirm I really had MS which meant a lumbar puncture--yup--the dreaded spinal tap. Now most people kind of sail through this process but a select few have a really nasty complication called a "spinal fluid leak" which causes a "REALLY BAD" headache.

[If you're squeemish, skip this paragraph--but if there is a lumbar puncture in your future, I would recommend reading it. Imagine you are fine if you are lying flat on your back. But if you lift your head up even just a tiny bit, it feels like some one has meat hooks in your brain and is pulling you back to flat. Not really an experience I would recommend--especially since it lasts about 3 weeks! There are things you can do to avoid it or shorten the duration, but you would have to know what they are and I did not. First--don't drive to another city to have a puncture done on a Saturday by someone in training ("how far in do I go? oops"). Second--don't listen when they say you can sit up and drive 3 hours home within a half hour of the procedure (remember it's Sat. and they have somewhere else they want to be)--but you don't want to be going anywhere until that little hole in your spinal column has sealed itself up. That might take holding still for a couple hours. If you do get the headache it will be very soon after the procedure--demand a blood patch--a tiny drop of your own blood which seals the leak and prevents the 3 week ordeal--better yet -- ask about the blood patch in advance. Forewarned is forearmed.]

So with the MS diagnosis confirmed, it was now time to start stopping it. What kind of MS is it and what treatment should I try? Docs kind of leave that up to you these days.

There are several forms of MS but the 2 biggest distinctions are that symptoms come and go-- that's relasing/remitting MS (RRMS) or symptoms come and stay and accumulate-- that's progressive MS. There are lot's of sub-categories and nuances but for this story, that's enough.

Since 85% of people with MS have relapsing remitting (RRMS), there is a higher concentration of effort being put into fixing that form of MS. Several new drugs have been developed to slow down the number of relapses (presentations of new symptoms) because relapses can leave behind some disability even after they "remit" or go away. So the theory is, avoid getting to the progressive phase of the disease at all. And since there are no drugs out there to stop the progressive forms of the disease like "Pimary Progressive MS (PPMS - progressing disability from the beginning) or secondary progressive MS (SPMS - which is what RRMS turns into if left untreated), what would you want to call your disease if no one was really sure? DUH. RRMS!

First up: Copaxone.
One little shot a day. Doesn't hurt a bit--going in--hurts like a crazy for 15 minute afterward--but hey--no pain no gain--right? Still I got new lesions on my MRI scans and new symptoms--just a little at a time--but they didn't go away. Like a little more unbalanced, a little weaker, a little bit dizzy. a little tingle here and there. So after 4 years, my neuro--a new one--said lets try Rebif. It is new and it might just work better.

Rebif--an interferon.
This is great I thought--shots only three days a week--different side effects and I was really tired of the every single day "burn" option. How bad can it be? Well let's see--I felt like I had the flu or a bad hang over 3 mornings a week. The shot hurt going in so I became increasingly reluctant to jab myself. And my skin was getting "tough" from repeated shots in the same place (there are only so many places on one body). To top it off, after 3 years with Rebif, added to 4 years on Copaxone, I had zero relapses and only one new brain lesion. I should be the poster child for the drug companies! By their measure of stopping relapses and brain lesions, I was perfect.

But I wasn't perfect. I could no longer grasp a pencil well enough to draw (I am an artist, remember). I could no longer walk across even a small room unaided. If I stood for more than 5 minutes I was completely exhausted. My husband had talked me into giving up driving (no sense in killing someone just because you need some groceries and I was having trouble gripping the wheel--let alone stepping on the brake--Yikes).

It was time to have a heart to heart--I will rephrase that--an unemotional and honest brain to brain discussion with my neurologist at our next meeting. He was apparently reaching the same conclusion because when I "walked" in, we both said simultaneously--"we need to talk". Really, we did. Yup. PPMS. Or at best SPMS. Only 7 years of giving myself useless expensive drugs with dangerous and unknown side effects. "Denial is not a river in Egypt" is probably a fitting expression.

So no more drugs. At least none labeled as a cure or a preventative.

So about my faith in science... it really hasn't diminished. I still think science will cure MS "soon." Stem cell research is on the move again after an 8 year roadblock. Wait a minute! Are those the same 8 years I spent enriching the pharmaceutical companies while stem cell research lagged behind? I resist anger, it sucks up energy... and I need energy to write this blog...

#5 Did ads and ethics make me a recluse?

The puritan ethics my father taught me--hard work, tenacity, a stiff upper lip and keeping your problems to yourself -- are all important tools to use in navigating through life (especially in school and work).

Likewise, there are some great motivational advertising messages that can serve you well, like "just do it", "go for the gusto", or "be all that you can be" and "it takes a licking and keeps on ticking". (Remember "better living through chemistry"? --but that's another story.)

Combine these messages with MS and you've got the perfect formula for disaster.
With those principles in place, I was not going to use any assistance to do anything until it beat me over the head.

First: The Cane. Someone gave me a cane and I was positively annoyed. I gave it to a friend's mother. Meanwhile I made regular embarrassing not to mention painful, dives earthward-- like in the middle of a crosswalk with the light turning red or stepping out of a car in front of a crowd at valet parking. Still too proud for a cane...let's see how ridiculous/dangerous would the trip need to be to concede the need for assistance? How about diving sideways into glass shelves filled with hair products at the hair dresser--taking out the shelves, a few patrons, and hundreds of bottles of shampoo? Would that be enough?

Ok ok--I will use a cane, but only if it's cute.

Next up: the walker. Oh no not me...only little old ladies use those things. If I can't walk with just a cane, I'll wall-walked around my own house. But you know what they say about accidents in the home. I crashed into coffee tables, bloodied up the patio, almost killed my dog who was breaking my fall, fell over backwards out of the shower (that prompted me to install a shower bar--what would it take for a walker?). How about 3 hours in the emergency room with 2 broken ribs from wall walking while carrying a glass of water (it takes 2 hands to successfully "wall walk").

Ok ok--I will use a walker--but only at home--I certainly wouldn't want anyone to think I'm "handicapped"--drunk maybe--while staggering around--or terminally clumsy -- or possibly a recluse--but not the dreaded disabled!

So now I was stubbornly stuck at home. I love my home--but not 24/7...

#4 The Holy Grail of Medical Diagnostics

They say knowledge is power and I for one have an inquiring mind. If Mayo Clinic could provide the answer...I was ready to try again.

It takes persistence to get an appointment at(dim the lights, roll the music, we are in the presence of greatness) Mayo Clinic in Jacksonville...months of persistence. That's a really good fit if you have a slow moving mystery to solve. I wouldn't recommend it for a sharp pain where your appendix lives. But when I did finally get my moment in the fall of '99, I wasn't disappointed. They start at the beginning (no previous tests or theories are permitted) with a GP. From there tests are ordered as they see fit, while they rule out one possibility after another. Bottom line...after just 5 days, 6 doctors, and lots of machines that went ping or gave you a torture level electric shock every 6 inches all over your body (my personal favorite) and many interviews, I sat alone in an office while the big brains behind the scenes discussed what to tell me. "Please don't let it be a brain tumor" I silently pleaded once again with who ever might be listening.

At last 2 neurologists came into the room together to pronounce that I had Multiple Sclerosis. Whew! What a RELIEF! MS. OK, I can cope with that. My grandpa had MS but he was old and he died of a heart attack. I would live! Hoorey!

I was actually pretty happy. A little nervous about how to break the news to my husband, family and friends without them freaking out-- but not really very worried about the disease itself. After all--this was the new millenium--now that we knew, surely we could stop this thing in it's tracks-- right then-- so it wouldn't get any worse. And the cure must be right around the corner, right? After all, my grandfather had it. They cured chicken pox, Diphtheria, influenza, Measles, whooping cough, mumps, rubella, polio...how tough could this MS be?

I was about to find out.

#3 "I meant to do that" Excuse Making 101

I am really quick on my feet (pun intended) when it comes to excuses. It's a skill I honed as a teenager. Mom: 'What is this pack of cigarettes doing in your purse?" Me: "They are not mine! Judy asked me to keep them so her Mom wouldn't find them." Mom: "Why does the car smell like smoke?" Me: "Some boys were leaning in the window at the drive-in--I think one of them smoked."

I made excuses with such conviction, even I almost believed them. So falling down (a lot), dropping things, and any number of other odd physical happenings were easily dismissed with excuses. If I went jogging and got blurred vision after only a mile, I wasn't drinking enough water. If I tripped and fell over a line in the sidewalk, I wasn't paying attention. If I woke up in the middle of the night with the room spinning around... well that wasn't quite as easy to dismiss, but I did. Hey it was gone in the morning, why dwell on it. If my foot went to sleep (that tingling sensation) and wouldn't wake up...oh well... must be poor circulation...and it doesn't hurt...it will go away eventually...and if it doesn't --so what.

And if I was careful, no one would even notice the limp--unless I had a glass of wine in my hand. I was at an art opening one evening--had just arrived minutes before and picked up a glass of wine. I walked by an acquaintance who said to me, "don't you think you've had enough, Meredy?--you're staggering." --really--he said that!

That was pretty good evidence that I wasn't finished with diagnosing the limp. So in March, 1999 at an Easter Brunch Party, my cousin Janet said enough is enough. Go to Mayo Clinic in Jacksonville and find out whats going on. It had been more than 6 years spent in excuses and denial...it was time...I was 50 years old.

#2 OMG, have I got a brain tumor?

Ok, ok, ok. After much harassing by one friend in particular (she know who she is), I fianlly agreed to go see a doctor for this "slight weakness" in my left leg. But the only doc I had was a gyn guy. So this was going to be a challenge. First I had to FIND a doctor to see, then the first thing I am seeing him for is to tell him my girlfriend thinks I limp when I've had too much to drink?! How silly does that sound!?

So when I was finally sitting in front of my new doc, telling her my left leg seemed a bit weak (while apologizing for taking up her time), you can imagine my surprise when she very seriously responded with physical tests--apparently to see if I was lying. [I guess there are folks out there that want to be sick]. On confirming that I was not lying, she settled in to a little talk that terrified me for the next 2 months and I will never forget.

She said. "If you were weak only in your left leg, I would look at your hip for the answer. If you were weak in your left arm, I would look at your shoulder. But you are weak on your whole left side, so I look here." At this point she tapped on my head, which immediately caused all the blood to drain right out of it. Then she ordered an MRI so they could look at my brain and made an appointment for 2 months later with a neurologist to analyze the MRI results. Yup, I said 2 months--I guess brain exams and neurologists are pretty popular since it takes so long to see one. Good thing it isn't anything serious like, oh, say, a brain tumor!

So....I waited....and waited... and worried...and partied with friends who assured me that I probably did not have a brain tumor and finally saw the neuro!

He popped the MRI scans up to look at (like an xray)...told me to walk up and down a hall while he watched (remember, I only limped while drunk so this was a big waste of time)... and then...2 months and some $3000 later... he said: "I don't know, come back if it gets worse."

I was genuinely pissed off (sorry about the language--but the moment called for it). He didn't know??!! What was the point of all these appointments, money, and anxiety? To be told "I don't know, try again later." ?

I said--ok--that's the last time I listen to someone tell me to go to the doctor. That's it! I quit! Who cares about a little limp! Forget it.

And I did...for 5 more years.

#1 On the beach in the 90s-"we've got time"

The thing about MS--at least for me--is that it is so slow and subtle (not like 9/11 at all) that I didn't really notice how fast it was changing my life. That is one of the main reasons I am writing this blog. It seems like a lifetime ago that I was on my beach bike riding furiously down New Smyrna Beach with friends in an attempt to beat the thunderstorm and lightening boltsclosing in behind us. This was a regular weekend afternoon activity because we always stayed for "just one more cold brew" at the beachfront bar before heading down the beach to the condo for an afternoon snooze--"the black clouds aren't coming THAT fast--we've got plenty of time"

Or do we? It wasn't really that long ago...it was the '90s...and it is only 2009--just one decade. Well to be fair, a decade and a half.

It was sitting in the hot sun on the patio at Tony & Joes beach bar that I first noticed that one leg felt a bit weaker than the other. Not a lot. But I remember asking a friend to test it by pushing on my shin--first one leg, then the other. He agreed. My left leg--and I'm left handed--was weaker. Hmmmm, I thought, that's weird... and then went back to my beer. I had better things to think about.