MS Awareness Week

The NMSS "MS=" Campaign

Well we're just about here again, MS Awareness week, and I have a whopping big sign on my office door, tho not everyone at my job knows I have MS. The ones that matter do, the others might be a little intrigued, but for the most part I no longer care.

I do like the NMSS' "MS=" campaign, but there so much that MS can = for me, and I'm not very pithy lately.

Perhaps MS=frustration at myself and also others for not seeing that I am, actually, not entirely well/healthy/fast. That would definitely go beyond one week or one month. But in any event, it's all an intriguing campaign and I wonder who out there knows what "MS=" for them. I'm sure it's ever changing-- it is for me!

Inspired by a blog

I'm a little tired lately, having gone back to work part time for 8 weeks before smacking head on into fulltime teaching again. I'm sure the 8am class isn't helping, but I am glad to notice I'm mostly on the ball.

I was reading a blog (MSLOL radio)which was speaking of show tunes, and the "Try to Remember" from 'The Fantasticks' was highlighted. I do like the song, but i also now associate it with Jerry Orbach singing it post-9/11 in NYC.

So there's a bittersweetness to it for me, as beautiful as it is (particularly as Jerry sang it -- Jerry, we miss you!), an autumnal feeling of both beauty and a deep longing for the things already past. I guess it just put me in mind of the wistfulness I've been experiencing lately. The general overall slowing of my physical self and to some extent my brain is really a different experience. I have been feeling some leg weakness (as I did in 2008) and def. some brain fog, but I still think for the most part I cover it well enough. I still say that i would retire tomorrow if I could.

As it is, two cats have been ill, Bear's Lipitor copay went up, and I have no idea how we'll cover our medical bills. Naturally, that will lead to worse credit, which will lead to yada yada yada. I'm so over my country some time. I know we can be the very best at so many things, but I tell you, MS will smack any national or local shortcomings right in your face.

So I try to remember that last september.. it's not easy, and it has been scary lately. I still am very glad for my MS doc and clinic, but oh so wanting to leave this place behind me, dust, sand, and all.

Happy MS Awareness Month, dammit... wish it never had to come again!!

FDA rejects Oral Cladribine

From Medscape-- not sure how to take this, given its checkered history, but at least Russians and Aussies can get it:


FDA Rejects Oral Cladribine for Multiple Sclerosis
Allison Gandey

March 2, 2011 — The US Food and Drug Administration (FDA) says it won't approve oral cladribine (Movectro, Merck Serono) for multiple sclerosis (MS) without more safety information. Merck announced today it received a complete response letter from the agency calling for additional analyses or new studies.

The company says it plans to request an end-of-review meeting with the FDA to clarify next steps and to identify whether data from completed and ongoing clinical studies can address the questions.

The FDA decision is the latest in a long line of disappointment for the new drug in the race for first oral agent for MS. Cladribine was initially granted fast-track status by the FDA in 2006, but the agency refused to file the company's new drug application in 2009 amid speculation about tabulation errors and potential safety concerns.

Oral fingolimod (Gilenya, Novartis) beat cladribine to market for relapsing-remitting MS. Other oral MS treatments in development include laquinimod (Teva), teriflunomide (sanofi-aventis), and BG-12 (Biogen).

Cladribine was recently approved in Russia and Australia but received a negative opinion from European regulators in September that was reiterated in January.

Increase in Cancer Cases
The European Medicines Agency said it was concerned about the increase in cancer cases seen in clinical trials with treatment. Regulators also complained the benefits and most appropriate dosage had not been well established.

The company says it will remain committed to completing the ongoing clinical trials of cladribine. These trials, already fully enrolled, will provide additional information on efficacy and safety.

Top-line results from the CLARITY (CLAdRIbine Tablets Treating MS OrallY) extension study and ORACLE MS (Oral Cladribine in Early MS) study are expected by the end of 2011. Top-line results from the ONWARD (Oral Cladribine Added ON To Rebif [interferon beta-1a] New Formulation in Patients With Active Relapsing Disease) study are anticipated in the first half of 2012.

"We look forward to working with the FDA to address the safety issues in its letter," Fereydoun Firouz, president and chief executive officer of EMD Serono, said in a statement.

"We will continue to move toward identifying a path that provides patients and physicians the opportunity to have access to cladribine tablets in the treatment of MS."

Upon entering the AZ Dept of Rehab...

...you find that while they are very willing to help, for literally 2 years they have been so underfunded everyone, but EVERYONE, is now on a waiting list for assistance. Bear's hearing loss is enough to make him a possible "Priority 2" for job assistance, assistive technology, etc, but of course, they're not really calling Priority 1 folk, who may have, say, lost a limb in an industrial accident.

I understand on the one hand, and on the other I'm furious that there is so very little AZ can do or has been able to do to help people who need it, especially if they don't fall, say 200% below the federal poverty limit. Sure, we have insurance, which I pay exorbitant amounts to so Bear can be covered; sure, we have a home which we won't be able to sell in the foreseeable future in order to move to a better/nicer/wiser/more beautiful place. Sure, we have food-- thanks, Mom, for being sure I had a fear of running out of food. I've never come close, except that one time I had only ketchup and a jar of peanut butter a day before payday. But these are the people who are gently having their lives chipped away, hanging on before bankruptcy, unable to borrow from job retirement funds or facing unreal penalties for doing so-- these are the people in whom the "bird of hope" perches and pecks away at their hearts until they expire, wondering "what happened?"

Dream on, dream on.

We're a 2D household! YAY TEAM!

Well it's not new, but with the addition of the BAHA box on the side of Bear's head, we have officially entered "2D" hood-- 2 differently (dis)abled people! Bear has severe hearing loss, more than 90% in one ear and more than 60% in the other. The BAHA (bone anchored hearing aid) uses some pretty cool technology to improve his hearing so he can hear much more clearly.

What was interesting was a meeting today of the Hearing Loss Assoc of America local chapter-- in his fifties, Bear was still the youngest. But I think he was excited to find some other HOH people, others he could relate to. I feel for him on this, since I'll be honest-- there's no MS local meeting anymore. And it has been really stressful lately, and I'm only recently coming to the realization that yeah-- ain't no way my life is really going to be very "normal" or necessarily stable. So it's nice for at least one of us to have some local support group or people.

Since both of our issues are essentially "Invisible", we face some fun stares and questions-- I'm sure some wonder about my crip placard. Bear now has a big "Driver is Hard of Hearing" sign on his visor-- a good bit of advice from his hearing aid dispenser. They're actually pre-printed by the state, so hey-- that's something to say for this gawdforsaken place.

While all of this has and continues to be expensive, at least we've had a chance to try the technology and clinical trials. I am very, very pleased about that, though I wish I lived IN the town for my trial and where Bear had his surgery for his hearing. Still a love/hate relationship with the state, mostly hate. If I could take my MS clinic and doctor with me back home, I SO would.

Just getting all the more encouraged to find a way into ADA advocacy!

Today I complete my 2nd* year..

Today is the *2nd anniversary of my MS diagnosis, and my brother Dave's birthday (hi bro!). It's a lot less fraught I think than last year, when I was really mid-clinical trial. Now, the most intense part of the trial is over, I seem to be doing really well, and I try not to let the paroxysmal stuff get to me.

I'm also off work until March, so I can be alternately lazy and pensive. Really what it means is I watch an awful lot of Food Network and Dirty Jobs. Last year was entirely too hectic with work alone, not to mention house repairs and the MS stuff. i still think about it almost every day, and of course when a nerve goes "PING!" it's quite hard to forget what's up with my head. But I am very fortunate in my doc and my MS clinic, and I'm really very grateful. Not much will of course ever be the same, not since Jan 13 2009, but it can be at least manageable and at best more than acceptable.

One thing I'm glad is mostly back is my ability to spell and type. Occasionally lately I'll have some weird spasm of word forgetfulness and it bothers me a lot. Actually, it both scares and infuriates me. My doc points out that he doesn't think I'm going to see much change if and when I do neuropsychological testing, etc, but admits that *I* can sense my own frustrations and halting language. he was very kind the last visit, December 2010: "These are meant for the average, so I don't think you'll see anything much. But it will make you feel better." I in fact have a pretty wildly expansive vocabulary as well as a decently good intelligence (you know, like, smartish and all educationally and experientially well-trained in the arts of thinkingness), and that's WHY I panic when I can't remember a word or how to spell it.

However, since he's been so on target with so much re: my MS, I will not only give him credit, I'll try to stop worrying so much. some might say, "hey, there's spell check!" to which I reply "hay, theirs spell czech!"

Happy month of Janus to all, and to all a good life!

Happy New Year

Well, 2010 did not go quietly... medical and other bills pile up every time we think we have some extra money! But I am enjoying the time off and really need to get into that feeling of relaxation.

Physically feeling pretty well, mentally a little beat-up lately. I do kind of feel a sense of imminent doom at times-- and apparently MS can give you some feelings of dread. (No kidding!) I think if I can just kind of convince myself that it's not the end of the world that somehow, even with an unemployed husband, etc etc, we can owe taxes. I swear, the world is nickel and diming me to death here. And at a certain point, I just won't be able to work extra here and there for more money. It's been an uphill battle to keep things going, but well... what to do?

Well, happy 2011 and may all your days be bright, joyful, painfree, and happy! Or close enough.