On a scale from 1 to 10, or, the EDSS

Today was visit number 17. It was to be a short checkup (after the long, gas-guzzling drive there)to include blood draw, vitals, and the Expanded Disability Status Scale test.

This test, as I've blogged about before is performed by a neurologist and it's the neurological equivalent of the 20 Questions game, but instead of "Is it bigger than a bread box?" you get questions like "Do you have hesitancy/urgency when urinating?". I always want to ask them something equally embarrassing in return and see how they like it...

"Do you have to sit like a girly-man when you pee?"

Anyhow, today's test was performed by a doctor whom I have seen before for the same test. He recalled my answer the last time he asked the standard question "Do you experience any sexual dysfunction?" and my reply was "Does not having any sex count as a dysfunction? No? Then I don't know if I'm sexually dysfunctional."

He had a good laugh over that (again) today, with the young guy accompanying him (remember it's a teaching hospital and I was the live specimen today).

The test went as it usually does, with notes being made that my left side was more outta wack (that's a medical term) than my right, which seemed in perfect wack.

At the end of the test I got 3 pleasant surprises.

1) When I asked what, theoretically, would happen if I couldn't finish the 500 meter walk, the doctor replied "What? Are you tired today and don't feel like it? Because it won't count toward your score if you don't want to walk."

So naturally, being of sound mind, I stated that I didn't feel like it. Thinking back now, that could have been a test of my mental acuity in that nobody in their RIGHT MIND would choose walking a long-ass hall 25 times over opting to take a pass. Therefore, I am in my right mind today. whew!

And the other pleasant surprises, you ask?

2) I got to listen to the neuro who performed the test explain to his student how to grade an EDSS test.... and I HEARD MY SCORE!! I have never before had an EDSS test and known what the results were because of all the hush-hush "we can't let #8 know anything about her trial stuff" kinda treatment.

I scored a 1.5. on a test where 0 is perfect and 10 is dead. The only thing they ever told me before was that I was closer to 0 than 10. Well, duh. I could have figured that out on my own.

and last but not least, the most pleasant of all surprises....

3) My extension phase is NOT one year as I could have SWORN I was told to begin with... it's 2 years! YIPPEE!! Guaranteed drugs for at least another year and 3 months. Whew. A Fingohead's worst nightmare -- to be denied her FTY720 -- avoided for another 365 days, or 12 months or 52 weeks but who's counting?

The rest of the visit was just getting my new pills and trying to work out the details of Novartis being cajoled into paying for my recent GYN visit due to an HSV outbreak and the need to be seen as my trial coordinator insisted. Seems if they insist, they should pay, right??

Well, the GYN visit collapsed from being about HSV into a scathing lectured (once the doc reviewed the notes from my last visit) about how I never got a follow up ultrasound regarding that cyst on my ovary.

He launched into a tirade about how there are no perfect tests for ovarian cancer and that I needed to stay on top of this. When he said "three months" it did not mean "or in a year, whichever you prefer".

So now here I am waiting to see if the drug company will pay for a follow up ultrasound of my ovary, which, if I self-paid would cost me $231 (might as well add a string of "0's" after that for either way I can't afford it).

I don't have the desire or mental strength to spend time worrying about the possibility that I have ovarian cancer. I just can muster the horror. Does that mean I'm slacking as a hypochondriac? No, whew, I was worried there for a minute, but any hypochondriac that can actually worry that they are somehow not performing correctly as said hypochondriac, well, they have nothing to worry about. How ironic.

I'll try to blog more when I have something profound to say. I've been waiting for profound thoughts and that's why it's been so quiet here. Maybe I should just stick to posting profound thoughts on Twitter since it is less strain on the brain to come up with profoundness in 140 characters or less.

Hope ya'll are staying relapse free or able to fake your way through. It's too beautiful out today... as my father would say "I think I'll leave it out."

Time once again for the Blue Crab Festival or What was I thinking?

Last year found me venturing out to the Blue Crab Festival for the first time since my diagnosis in '99. Fingolimod had given me back so much of my life that I dared to walk where I hadn't walked in years: the streets of downtown Palatka, FL during one of their many street-clogging, traffic-halting "festivals".

This year was not going to find me sweating and gimping around cursing myself and wishing I had never left the comfort of my air conditioned home with comfy chairs ever 10 feet. No sir! I had learned that I COULD scale Mt. Blue Crab Festival and live to tell the tale... those who climb Everest don't do it as a once a year family vacation. They do it, they got the T-shirt, and they move on.

I was going to move on.... over from the computer to the couch and see what was on satellite.

Until I got the call from my sister.

"Did you want to take the kids to the Blue Crab Festival and check out the Seafood Cookoff?"

Knee jerk reaction would be to say "NOOOOOO!!!" Not only was I happy not to drive there, find a place to park within a day's hike to the activities, walk all over in the heat and humidity until I couldn't feel my legs and my knees wanted to buckle... I didn't want to also spend my life savings on letting the kids gamble with their lives aboard the rickety-looking carnival rides operated by folks with names like "Cletus" who were sporting a whole set of 3 teeth in their heads.

But there was something intriguing, magical, beckoning, about the words "Seafood Cookoff". Maybe it had to do with the fact that since I gave up cigarettes I have doubled down on my food fascination, or maybe it was the fact that I had yet to eat breakfast that day, but I caved.

Within hours we were instructing the kids on how much of a rip-off the rides were and how much more enjoyment they would get out of a funnel cake as we were on our way (blue parking plackard in hand) to go the the Blue Crab Festival Seafood Cookoff.

We parked at the Holiday Inn, which was across the 4-lane highway from the festival. As we pulled into the parking lot we saw 3 dirt-bag looking people with a hand made sign stuck in the ground that said "Parking $5". They were sitting on those plastic patio chairs you can get from Big Lots for $5 each and they just didn't have any "officalness" about them. We handed them $5 as my sister passed on the joke that we thought they were just sitting there taking $5 because it seemed like a good scam. I still don't know if Holiday Inn had a clue they were selling their parking spaces.

We had the bright idea that we should walk the boardwalk that goes parallel to the bridge, out over the water, and then crosses under the bridge and back parallel to the other side of the street. This way we would avoid all the traffic as there was no light to cross at right there by the foot of the bridge.

We won't do that again.

Northeast Florida has just had 8 straight days of torrential downpours and this day (Saturday, May 23, 2009) looked to hold no promise of any glimpse of sunshine, altho the rains had temporarily ceased.

The walkway was wooden and the cupped boards were puddled with water. This was fine until we entered the underworld side of Beneath The Bridge where bird crap, bat droppings, mold, and mildew rule the domain. Suddenly the puddles became slip-n-slide death trap land mines to be avoided at all cost.

At one point my sister grabbed the handrail to avoid catastrophy. Big mistake. She shook hands with a great big spiderweb instead. Ewwww!!

By the time we had walked first out over the water, then under the bridge of trolls, and back to dry land, we had walked about 10 times the crow flying distance between the car and the tent with the Seafood Cookoff. Ah well, live and learn. Or, live and forget and be condemned to think that street-crossing strategy is a good idea next year.

We made it to the tent where the Seafood Cookoff was underway but not before hunting down a funnel cake. Seems my son was more interested in cartoons than breakfast, so (once you take away electronic forms of stimulation) he was suddenly starving to death.

Hard to believe a fried lump of drizzled batter much akin to the mess I sometimes make creating pancakes can actually fetch $5. Same thing with the lemon, chopped in half and tossed into a cup (no larger than I'm given for urine samples) along with a little hose water and sugar. They dub it Lemonade and get $5.

We spent $15 on one funnel cake and 2 lemonades before we ever made it to the Seafood Cookoff tent.

Once seated at a plywood table we tore into the funnel cake from 4 competing sides and devoured the poor thing before you could say "drawn and quartered".

We saw a few people we knew, but mostly strangers who came up with their kids and said "my kid knows your kid from school and wanted to say 'hi'."

There's nothing more disconcerting than taking a 6-year-old granddaughter and a 10-year-old son someplace out in public only to discover they have more of a social life than you do.

Then came the judging. I don't remember who won what for which entry, but I do remember that Mary Conner who got 3rd place for her chowder gets my vote for best tasting seafood concoction I ever ate. Yum! I don't even CARE that I didn't get to sample 1st or 2nd place stuff. Her's was downright heavenly.

After we tossed our sample cups we debated the long avenue stretched out ahead of us. What appeared to be hundred of blocks (in reality only about 10 maybe) lined on either side with booths of arts and crafts, downright junk, and the wild and weird.

Dammit. I was tired of giving in to my old body and tired legs every year. It's gotten to where if you ask one of the kids in the family to do something, they complain "I don't want to...my legs are tired!" Knowing where they got that saying made me want to fight thru the pain that much more.

"Let's see what's up that way," I said to my sister. She was taken aback (I always wanted to say that) and had a look of awe and wonderment on her face.

"You really want to??" she said in that "I'm not so sure about your current state of mind" kind of tone.

"Yeah, I think so."

And with that we each took the hand of one of the kids and started wandering with the ebb and flow of humanity in the general direction of Up the Street and (more critically) Away from the Car.

There were leather belts and caps with names stamped on them, there were cloggers dancing in the street, there was a guy with an automatic bubble blower, there were food vendors and hand-made everything....

I came to stop (more out of physical necessity than interest) at a booth where the vendors were selling their hand made pottery. The longer I looked, the more beautiful the pieces became. I started looking at the price tags (something I never bother to do at these places since I have no intention of spending money).

And then I spied the basket.

There was a woven basket with these small disk shapes of pottery, all ruffled on their edges and stamped with various designs in the center -- all beach themed. I read the sign -- "Spoon rests - $4 ea. or 3/$10".

That's all it took. I've been meaning to buy a spoon rest and what nicer one could I ask for? A trophy of sorts that, in future years, I can look and and think "I walked a LOT that day!" and hopefully that memory will make me smile.

I picked out one for me, one for Mom and let my sister pick her own.

We forged ahead.

After several minutes of seeing stupid T-shirts for sale and dog toys, and handmade wooden furniture... I suddenly realized my legs were screaming "UNCLE!".

"You want to go back now?" my sister asked, as she noticed I was no longer moving forward but rather standing still staring glassy-eyed at the endless corridor of booths ahead of us.

"I'm done walking," I said. Trouble was, I wish I would have known halfway to that point that THAT was all the walking I wanted to do. That way I could give out exactly as we made it back to the car.

My rubber chicken legs managed to carry me (without too many antics) back to the car via crossing the street down by the light. No more scary pigeon poop, spiderweb, and god-knows-what covered walkways beneath bridges. We leave that to the trolls.

As we were strapping on our seatbelts, my granddaughter said "Look! Just in time!"

We all looked up to see the black cloud in the sky split open and pour it's guts out on the Blue Crab Festival.

As we drove away, my sister and I reminded each other that no matter what we might think NEXT year, we really DON'T want to do this again.

Too many spoons used, not enough return. (if you don't know the spoons theory, you can read about it by clicking here).

If I could have walked another 10 feet or so, I probably could have gotten that guy in the T-shirt booth to make me one that said "I survived another stupid festival and all I got was this overpriced T-shirt".

Secretly, tho, I am ecstatic to be able to complain that I WALKED AROUND at another moronic festival. It's better than not walking around at all. Which means that, despite the fact that I know it will suck, I'll probably try it again next year.... just because I can.

Regenerate Myelin?

Interesting article I came across today...

Researchers Identify Pathway To Reactivate Myelin Repair

Article Date: 13 May 2009

UMDNJ researchers have identified a key pathway that could lead to new therapies to repair nerve cells' protective coating stripped away as a result of autoimmune diseases such as Multiple Sclerosis (MS). An article reporting their findings will appear in the May 13 online edition of the Journal of Neuroscience.

Myelin is fatty material that coats and protects the ends of nerve cells. The loss of myelin and myelin-producing cells impairs the ability of nerves to conduct signals. A severe loss may lead to erosion of nerve tissues and result in permanent damage.

"In people with MS that is relapsing-remitting, the body can replace myelin that has been stripped away," explained Teresa L. Wood, Ph.D., the study's lead investigator. "But, after repeated attacks, that process of replacement no longer functions well," she added.

"Our data demonstrate that a novel cellular pathway, called the mammalian target of rapamycin (mTOR), regulates the generation of new myelin-producing cells (oligodendrocytes) and the production of myelin in immature rodent cells," Wood said. She is a professor in the Department of Neurology & Neurosciences and the Rena Warshow Chair in Multiple Sclerosis at the UMDNJ-New Jersey Medical School.

More work is needed to determine if the key to reactivate remyelination is to stimulate the pathway or if environmental impediments, such as inflammation, also must be overcome to allow the pathway to function normally. "Now at least we know a target to go after to promote repair," she said.

The researchers' work may also lead to new therapies for other disorders where the myelin-producing cells are affected, such as autism, Alzheimer's disease, and perinatal brain injury.

The University of Medicine and Dentistry of New Jersey (UMDNJ) is the nation's largest free-standing public health sciences university with nearly 5,700 students attending the state's three medical schools, its only dental school, a graduate school of biomedical sciences, a school of health related professions, a school of nursing and its only school of public health on five campuses. Annually, there are more than two million patient visits at UMDNJ facilities and faculty practices at campuses in Newark, New Brunswick/Piscataway, Scotch Plains, Camden and Stratford. UMDNJ operates University Hospital, a Level I Trauma Center in Newark, and University Behavioral HealthCare, a statewide mental health and addiction services network.

Pill vs Shot

Just yesterday I was wondering if I took my pill already. I do that a lot. I need to use a pill box and then check to see what day it is and whether or not my pill for that day is gone.

I do use both Google Calendar and Yahoo Calendar reminder emails set to send out at 9am every day. I'm usually sitting at the computer so that works out well. But I had to make a plan to get up as soon as I see the email, take the pill, and then delete the email.

I seem to have a lot of short term memory issues and find that sometimes I get up, go to get the pill, realize my coffee needs warmed up so I can have something to swallow the pill with and I busy myself with refreshing my cup... only to find that I sit back down at the computer with a steaming cup of decaf and no pill.

I go back to checking email and see the pill reminder again. Then I sit there in a panic trying to rewind the DVR of my life to see if I took it or not, only to realize my life has no DVR or rewind button and what I see is that snow you get when you forget to pay the cable bill.

So, I now realize that the shots actually HAVE one up on the pill in the reminder category.

I never had to have a reminder email to do my shot. Not when I was on Copaxone, and not in the first part of this Phase III trial when I was *supposedly* injecting Avonex once a week but it turned out to be a healthy dose of IM water, no doubt. (I won't know until August, but I'm fairly certain I've been on fingolimod the whole time).

So, if I were sitting here wondering if I took my SHOT, I could just pat myself down until I found the sore, welted spot. The shot wins in the "I Know I Did It" department.

I think when I am done with the trial and go back to facing a choice in medications I'm pretty sure I'll opt for more email reminders or cellphone reminders or some other foolproof routine to use over the itchy, bruised, sore, welted shot reminder. True, it works well, but still.

New data released on Fingolimod FTY720

I've been patiently awaiting the news from the American Academy of Neurology (AAN) congress, and here it is, hot off the presses...

Basel, April 29, 2009 - New Phase III results presented at the American Academy of Neurology (AAN) congress show that 80-83% of patients taking FTY720 (fingolimod)*, an investigational oral compound for relapsing-remitting multiple sclerosis, remained free of relapses during the one-year study compared to 69% of those on interferon beta-1a[2], an established standard of care[3] (p<0.001).

These data reinforce previous results from the TRANSFORMS study announced in December 2008 showing that the relapse rate at one year was 52% lower in patients taking FTY720 0.5 mg than with interferon beta-1a, or Avonex®** (0.16 vs. 0.33 respectively)[2]. The relapse rate with FTY720 1.25 mg was 38% lower than with interferon beta-1a (0.20 vs. 0.33, both p<0.001)[2].>

"TRANSFORMS is the first Phase III clinical trial to show that oral fingolimod may provide patients with an alternative choice to currently available medications for treating relapsing-remitting multiple sclerosis," said Jeffrey Cohen, MD, lead investigator of the TRANSFORMS study and staff physician at the Cleveland Clinic Mellen Center for Multiple Sclerosis Treatment and Research in Cleveland, Ohio, USA.

Also presented at AAN were longer-term results from an ongoing open-label Phase II extension study (n=155)[1]. This showed continued low relapse rates after four years of treatment with FTY720, with no significant change in the safety profile from three to four years[1].

In TRANSFORMS, FTY720 was generally well-tolerated with 87% of FTY720 patients completing the study on treatment[2]. The most commonly reported adverse events, seen in more than 10% of patients in all three study arms, were headache, nasopharyngitis and fatigue[2]. Adverse events seen in FTY720-treated patients in TRANSFORMS included transient reductions in heart rate at the start of treatment, small increases in blood pressure on average, elevations in liver enzymes (also seen with interferon beta-1a)[2], and a small number of cases of macular edema. In terms of serious adverse events, infections, bradycardia and atrioventricular block, malignancies and dyspnea were reported in less than 2% of FTY720-treated patients[2]. Following the preliminary release of data in December 2008, a patient who had discontinued FTY720 treatment in August 2008 died from aspiration pneumonia related to a progressive neurological condition in February 2009. The exact nature of the underlying diagnosis is unclear, but viral testing has proved negative, including testing for progressive multifocal leukoencephalopathy (PML). A role for FTY720 could neither be confirmed nor excluded. In general, the safety profile of the FTY720 0.5 mg dose appeared to be better than that of the 1.25 mg dose.

Read the rest, including disclaimers, etc. [click here].

When you least expect it...

Last night my old man ran out of cigarettes. He went to the convenience store to buy some more and happened to run into a guy he knows through a mutual friend. That's when he got the bad news.

Ted, our *mutual friend* had been murdered.

We had wondered why he hadn't been around in the past 6 months, but Ted's like that. He's an aging hippy that always has something going on, some new scheme to try and make money without actually working. Mostly it was selling collectible car parts on ebay and buying/selling property. He seemed to do well at both and spent his time however he saw fit.

To think he has been murdered and I'll never see his bearded grin show up at my sliding glass door again (which he knew ticked me off as I prefer to have visitors come to the front door and not scare the crap out of me), well it just leaves me really sad.

And thinking about how nothing we can do will stop the inevitible from becoming the Present. At some point, and the day will come, we will each face our mortality.

I can picture Ted standing here having this very conversation with me and giving me his philosophy on what comes after... I just can't believe he is gone.

Like dandelion seeds scattered by the wind, he is no more. And while we weren't the best of friends (and I often found myself ticked off at him for pushing my buttons which greatly amused him), I do miss him and now feel so vulnerable to the fragility of life itself.

And it was so pointless and preventable that it pisses me off that it happened at all.

He went to argue with someone he's had a long-standing feud with. I vaguely remember him recounting tales of why the two families (much like the famed Hatfields and McCoys) didn't get along.

But that was back in western NY state and altho he makes frequent trips between FL and NY to get car parts to sell on ebay, I thought the feud was all in the past.

Apparently it wasn't.

Ted went to the guy's house and fought with him in the driveway. When the guy ran into his house, Ted followed full of rage. The man ran to his bedroom and locked the door behind him. Ted, unarmed but angry, stood outside the door yelling at him to come out and banging on the door.

The man in the bedroom had a shotgun.

One blast through the door and Ted, who only had words as a weapon, lay dying on the floor.

The man who shot him calmly called 911 after bystanders to the incident tried unsuccessfully to administer CPR, and reported that he needed the cops to come because he had just killed a man.

And with that, Ted's laughter, wise-ass comments, eagerness to lend you a hand, and gentle friendship was extinguished forever.

I just can't picture him as the "aggressor" in a confrontational situation, but everyone has lost their temper before. Now I wish I had paid more attention to the stories of why they had a beef to settle. Then maybe I could see why Ted had become so angry and chased the guy right into his home.

In NY state, you can shoot to kill if you are in fear for your life. The grand jury decided that is just what this guy did and that he had every right to. Never mind the long standing feud, or the fact that Ted was unarmed. He made a poor judgment call to visit this guy... and paid for it with his life. My guess is that no matter what the problem was, Ted wouldn't have thought it worth losing his life over. Nor taking one.

Can you picture a hippy all laid back and grinning with his long hair, beard, faded, ripped t-shirt, holey jeans and tennis shoes held together by duct tape doing such a thing? I can't.

Death is a slap in the face. Death is ugly. Death is unfair. And death keeps stealing my friends.

I feel like it's circling me.

The worst part about all of this??

The indignity that I can't find a single obituary or eulogy to Ted. The newspaper story just has him as the victim of an incident. It didn't even humanize him. It was all about the other guy.

Now that I've read that and seen the outcome of a story about a person I knew pretty well, it makes me wonder about our whole justice system. True, I wasn't there and Ted could have been menacing and maybe scared the other person bad enough to use deadly force...

Or maybe the guy set him up, running right to his gun and figuring he'd end it once and for all. A trap that he knew he'd get out of by playing the self defense card. Finally winning the feud once and for all.

Who knows.

But the fact that he's gone and life goes on and it seems just like he never existed... that creeps me out and pisses me off. Something ought to have changed because of his having been here, and there should be some kind of hole -- other than the one in my psyche -- that is left by his absence.

Not one line in the local paper.

Just a For Sale sign in front of his house.

So, that's why I'm writing this. Something needs to be out there somewhere to say goodbye to Ted.

We loved you (sorta, ya big lug) and will miss you.

We'll miss you showing up in God knows what kind of new clunker you got for a song so you can rev it up in the driveway and ask the old man what he thinks that noise might be.

I'll miss looking casually over to the back door and jumping out of my skin because you freaked me out by standing unannounced on my back patio.

I'll miss the way you kept trying to talk me into helping you with your real estate ventures, and trying to get me to make that website for your car parts.

I'll miss how you knew it all, or thought you did.

I'll miss how you told such wacked out stories that we never believed you once you had some Jack Daniels in you.

Guess maybe we should have paid more attention.

I'll remember your wave as you left on your trip to NY. "See ya!" you yelled.

In heaven, Ted.

Someday.

I can't believe it took this long...

...to finally get called for jury duty. I thought I had managed to fly under the radar and escape detection. Oh well. It was fun while it lasted.

Today I have to report to the courthouse at 9 am, paper in hand. First off, I can't believe they would send me a piece of paper a month in advance and tell me that I had to bring it to court. If I so much as open the electric bill and set it down I can't find it 10 minutes later. I have spent a solid month stressing over making sure I'm constantly aware of where that paper from court is at all times.

I pinned it to my cork board, but I so rarely do something like that that I worried I wouldn't think to look there. Then I put it on top of the stack of stuff in front of my computer but fretted that it would be buried in the chronological order of stuff that piles up there. Then I folded it up and stuck it in my purse.

I rarely, if ever, carry a purse. I'm a license in my back pocket, money in the front kinda gal. I don't carry around makeup because I don't wear it, and all that other junk that women tend to haul around just seems better left at home to me.

But I figured if I put it in my purse, and then trained myself to use the purse that by the time I went to court I would have the whole dilemma solved. So I've been carrying around this little canvas satchel for a month now. Well, not always carrying it around because there have been 3 times I had to return home for it because all my money now resides there and the grocery store no longer takes wampum. Besides, I wasn't totally sure what "wampum" was and didn't want to seem ignorant at the checkout when trying to pay with parking lot scrapings.

So, now I am trained, partly, to carry a purse. The letter is neatly folded in the purse. My bifocals and car keys and license and money are also in the purse so as to remind me that I need to strap on the canvas satchel before leaving the house. Thus I will "remember" the letter because I can't possibly leave without it.

I tried all this with the corkboard first, but that was awkward to carry around.

Anyhow, all joking aside, while I am more than ready to do my civic duty and serve my community by screaming out "hang the bastard!", I am more terrified of this than I am about having an MRI.

Maybe because I have had that "conditioning" treatment when you are faced with your fear repeatedly in order to overcome it. (Not out of choice, but I've had a few more than normal due to this clinical trial).

The thought of standing before a room full of people and having to recount any mundane details of my life has me locked in fear. I once tried to get a permit for a conditional use for my home so that I could operate my print shop out of the garage. I had to speak before the city board and the general public gathered there. When I spoke it sounded more like a croaking frog chomping down on a squealing mouse. My words came in grunts and squeaks.

It was then I realized I'm no public speaker.

So today, if my attempt to play the MS card and get out of all this stress inducing circus fails me, I will at least have an opportunity to face my fear of public speaking and hopefully overcome in with a minimal amount of embarrassment and a semi-human speaking voice.

If I can just get past the "it's all about me" part, then jurors get to sit back and shut up. The worst part will be over. And I have learned to sleep sitting up, so I'm good to go. :-) (you know I'm kidding, don't ya?)

If I get picked for some juicy trial I'll blog about it after it's all over. I've been looking for something to talk about anyhow.

wish me luck (croak).