RIP Billy Mays

He missed his calling and should have been a comedian. I'd have liked to have seen more of him than just the 2 minutes of yelling at me to buy something.

Loved watching "Pitchmen".

Infomercials just won't ever be the same again.

My next move...

Inspired by all the videos floating around out there as a result of Michael Jackson's untimely death, I have decided this is the next thing I'm going to try to accomplish.

I want to go for my visit to the clinical trial checkup and have the neuro performing the EDSS test ask me to walk for him. I just want to see the look on his face when I pull off the Moon Walk.

I'll probably lose points off the mental stability part of the test (with copious notes accompanying the test outlining my Wacko Jacko impersonation). Heck, they may even admit me for further evaluation, or maybe even halt the clinical trial because of this heretofore unknown side effect.

I just want to see their faces.

And between tests, when I have to walk from one office to another... I'm going to say it's the only way I can now walk. BWAHAHAHA!

I'll be lucky if I can do it at all. So far, in preliminary practice sessions in my hardwood floored hallway and stockinged feet, I have been unsuccessful at recreating this move in a smooth, flowing fashion.

First off, I have to put my hands on either wall to my sides in order to maintain my balance in the starting position, which ends up more reminiscent of Daniel about to pull of the Crane kick in Karate Kid.



Maybe I should just practice that. Then when the doc goes to wack me on the knee with his rubber mallet, I can say it was just my hyper reflexes. Not my fault.

I don't know what is driving me to conquer moonwalking at this time in my life when I couldn't do it back in the 80's.

Maybe I do have some mental deficit.

Or maybe I should just get a life. :-)

My own personal update in the FTY720 TRANSFORMS clinical trial

I just posted about the newest findings that kick butt about FingoHeads from the Phase II trial being still relapse free after FOUR YEARS (standing ovation for them, please) but I thought I should throw in my own two cents about my experience thus far.

I started in August 07 so that means I have been in this clinical trial for

this long (according to www.wolframalpha.com )

During this time I have never officially had a relapse, although I have informed my trial nurse at least 2 times that I remember that I thought I might possibly be having one.

And lately I have been having not so much of a relapse, but just a recurrence of oldies but goodies. For instance, my legs are doing that fire and ice thing again where my calves feel like they are burning or really cold. The other night they cramped up really badly, too. I remember both of these symptoms from the very last bona fide relapse I did have -- the one from April of 07. It was much more pronounced back then. After having just a taste of it lately I wonder how I made it through life back then where I was in a constant state of misery.

These latest symptoms are only cropping up lately because I'm trying to do too much, or getting myself stressed out, or not getting enough sleep, or a combination of all of them.

They really started right around the time my son was going to graduate from elementary school and I realized he's growing up despite my efforts to keep him forever young so that I, too, shall be. With all the end of year parties, and then the HSV attack which led me to the GYN only to find out I need that ultrasound of the ovarian cyst and getting reprimanded about ovarian cancer, and then over working myself, etc. etc.

Well, these symptoms are like some sort of divining rod or something. When I have all the right circumstances, my legs start to burn and I get that buzzing down my spine and everything starts cramping up. All as if to tell me, "hey now! Take it easy!!" I don't find water, but I do find my body needing rest.

Once I've had a good night's sleep in my recliner (I've been sleeping there for 2 years now [possible Fingolimod side effect alert!!] and, try as I might to go back to a real bed, I just can't do it) I feel all better.

When I tell the trial people about these "almost" relapses, I am asked to grade them on a scale of 1-10 as far as severity goes. It's always been a 1, or 2 at the most, so they end up conveniently forgetting that I called. Nobody ever really checks it out to follow up with poking/prodding/testing to verify whether or not there is disease activity.

So, while the news I posted in my last blog entry is GREAT, I just wonder how many of us have actually had some form of a relapse that went unnoticed.

I still proudly say that I am relapse free after more than 2 years (since April 07) but sometimes I wonder if that's really the case...

Or maybe I'm just being true to my hypochondriacal self?

Only my hairdresser knows for sure. (for your younger people, that's a Clairol commercial from the 70s I think).

I'll have to ask her next time I see her.

Oral Fingolimod Lowers Disease Activity in Patients With MS for Up to 4 Years

Just got this in my alert email today and wanted to share. My favorite part is in green.

Oral Fingolimod Lowers Disease Activity in Patients With MS for Up to 4 Years: Presented at ENS

By Judith Moser, MD

MILAN, Italy -- June 23, 2009 -- Patients with multiple sclerosis (MS) show sustained clinical benefit when treated with the novel sphingosine-1-phosphatase receptor modulator fingolimod (FTY720), according to the extension phase of a multicentre study presented here at the 19th Meeting of the European Neurological Society (ENS).

Ludwig Kappos, MD, Clinic of Neurology, University Hospital Basel, Basel, Switzerland, presented the 4-year follow-up findings of a phase 2 proof-of-concept study investigating oral fingolimod in the treatment of MS here on June 22.

Fingolimod targets MS via the immune system and probably via the central nervous system as well. "The main mode of action pertains to a redistribution of lymphocytes, which normally stay protected in lymph nodes," Dr. Kappos explained.

The core study, which covered the time between baseline and 6 months, compared once-daily fingolimod 1.25 and 5.00 mg with placebo. In the randomised, dose-blind extension study (months 7-48), patients formerly on placebo were rerandomised to once-daily oral fingolimod 1.25 or 5.00 mg so that all patients were on active treatment.

As Dr. Kappos noted, the number of circulating lymphocytes was permanently reduced in all dose groups by approximately 70% throughout the extension period.

Similarly, the number of gadolinium-enhancing lesions remained low in all arms over 48 months. More than 95% of the study population were free of gadolinium-enhancing lesions at the end of the 4-year extension period.

These findings translated into a low annualised relapse rate. Most patients (51%-70%) remained relapse-free for up to 48 months. Furthermore, most patients were free from disability progression at the end of the study.

"Fingolimod was well tolerated," Dr. Kappos reported. "The long-term safety profile was in line with previous findings."

In the group with the highest cumulative dose, a tendency toward higher infection and nasopharyngitis rates was seen. However, serious adverse events were equally distributed between the dose groups.

Blood pressure and pulmonary function measurements remained stable during the extension study. Asymptomatic elevations of liver enzymes were observed in 16% of patients without any evidence of serious drug-induced liver injury.

Seven cases of localised skin cancers, which were detected by regular examination, occurred within the first 36 months. Between months 37 and 48, no new cases were seen. "This indicates a lack of cumulative risk with increasing drug exposure," Dr. Kappos said.

A phase 3 study program is further characterising the efficacy, safety, and tolerability of oral fingolimod in patients with MS.

Funding for this study was provided by Novartis Pharma.

[Presentation title: Majority of Patients With Relapsing Multiple Sclerosis Receiving Oral Fingolimod (FTY720, a Sphingosine-1-Phosphatase Receptor Modulator) Remain Free From Any Inflammatory Activity: Results of a 4-Yr, Phase II Extension. Abstract O21]

Source: http://www.docguide.com/news/content.nsf/news/852571020057CCF6852575DE00716D8A

If you don't have insurance, just don't get sick. Simple.

I'm so sick of this crap. I've been dealing with it (like a LOT of other American's) for years now. A diagnosis of MS that keeps me from being able to get health insurance, thus effectively cutting me off at the knees when it comes to health care.

I just got a call from the imaging center saying that the idea of billing Novartis for the ultrasound I need of my left ovary is "too third party" for them. I can't have it done.

Great. There is a machine in that building and a person who gets paid by the hour to operate it, that is just so close I can smell that stupid gel they smear you with, BUT I can't get it done so I get to just GUESS if I have an ovary-bomb waiting to kill me.

Or, I can pay thru the nose. Money I don't have that I am trying to scrape up to keep from losing my home (a whole different ball of stressful worry wax).

Funny that Novartis' check was good for them last year when they did the first ultrasound that discovered the cyst. You get one new person in the mix and they have no problem telling you NO.

How can one human being sit there and not break down into tears having to tell another that a possibly life-saving procedure that could change the whole direction of the remainder of the other person's life is going to be denied them because they don't have enough pictures of dead presidents hanging around???

This is freaking absurd and God is looking down on us ready to throw up because it makes him so sick to see what we have become as a society. Maybe he should. Maybe it should be a big plague of puke raining down on us all, clogging all the precious machines that only the wealthy are privileged enough to be treated with. Clogging everything and sickening everyone. What would the insurance gods do then?? Go hide under a big red umbrella? I think not.

And they would be running around screaming in fear as the puke slowly killed them. And the rest, like me, would be calmly standing by welcoming them to our world.

there. I feel better.

Maybe I can get someone to loan me the money.

And then I better just pray it turns out to be nothing because if just DIAGNOSING ovarian cancer can be so elusively hard for the uninsured to accomplish, treating it will take an act of... well, God.

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.