Tuesday, June 27, 2017

Ocrevus #1

FINALLY! After several years off drugs for my RRMS, through trying Plegridy and Tecfidera, I'm finally back to get ocrevus,  clinical trial for which I was in 2009-2011. It worked spectacularly too.  So I'm excited about this, and amused by the infusion center I'm at. I have my netbook, usbs of silent films, and my lucky Lionel Barrymore as Rasputin shirt on. :)

Let's see how this goes! And yes I did apply for and recieved the copay assistance---ocrevuscopay.com, if you're interested.

Tuesday, April 18, 2017

Ocrevus...it's on!

 Hello you gorgeous phase II clinical trial drug of my life,  you...

It's on. Oddly,  my Neuro who prescribed it is leaving the hospital soon,  where my Neuro who got me in the phase 2 trial for it left that hospital not long after the trial there ended. Either way,  I'm grateful to both.  Yes,  there will be a pharmco discount plan right off.

So. Bloody. Thrilled! Let's do this thing! Besides, Tecfidera doesn't seem to be doing much.  So there.

Tuesday, January 10, 2017

Happy (?) New Year


Well for my first post here of the new year, I do want to wish my 2.5 readers a good, joyous new year with healing and love. Having said that...

Good lord, 2016! And I just mean for myself. My first relapse in about 7 years, struggling to get that under control, and almost succeeding, first case of optic neuritis, lots of cog fog...and no, I still don't think Tecfidera is working. And now, instead of the FDA approving Ocrelizumab for RRMS on December 28, they're pushing the decision to late March, to better look at manufacturing issues or what not (thankfully, not over safety concerns). Ever since the end of that Phase II trial I was in for it, I have been waiting for its approval...annnnnd I'm still waiting. PAH!

I aged a great, great deal last year, measure not just in the incredible increase in gray hairs but in my frustration with this stupid disease. I honestly don't think, given my career, that being able to walk is always the primary concern for me. I CAN'T THINK AS FAST I ONCE COULD. And without bragging, I can say I was and basically am still a very rapid thinker-- it's my job, it's what I've done my whole working life, it's part of my educational training, and it's me. I enjoy solving problems and moving on, I actually enjoy multitasking--

--well, I used to. And I am truly sick of people laughing and saying, "ha ha, well, now that just means you're like one of us" (I presume they mean "normal", non-MS, non-brain intensive-career people).  Well if I am, then I think it bites. I don't want to be "normal", I never have been, and even the MS can't make me normal; it just makes me feel broken sometimes. I have made a couple of "forgetful" errors that could have been dangerous (the classic left the stove on one didn't cause any damage) and it's frightening to me, even if yes, other people do forget things now and then. It's not the same, or it certainly doesn't feel the same.

I presume a few out there can relate to this. I've made some adjustments and I have a wonderful boss and coworkers who really, really are helpful and patient. So I know I am very lucky, even if my job is grant-funded and we're up for renewal in what could be an ominous education-funding year. I have insurance, a partner who is incredibly patient, and some lovely cat and dog children.

But I also have MS, and yeah, a lot of last year, it really DID have me.

Friday, September 30, 2016

Tired of Tec

I think I'm done with tecfidera.  Ocrelizumab seems to have at least a name from the feds,  so approval looks imminent if not already done. I'm ludicrously exhausted. Honestly,  I give tecfidera credit for weight loss,  but I'm just hammered with fatigue, limping, cog-fogged... Really,  maybe I just improved because of the steroids when I relapsed. I feel like crud, unusually so.

I have no idea of it's working.  My neuro is happy I'm not on crutches now due to weak legs, but they sure tire fast! After all,  I work primarily with my brain,  not my feet, so I am more worried about cog problems than limping or not.

I'm not sure what else to do about the fatigue--already use adderall to stay awake, but it's not enough lately.

I don't want my bday to dawn when I feel this way,  and it is RIGHT around the corner!  Ugh, ugh, and damn.

Thursday, August 11, 2016

Cross-post: Lionel Barrymore and wheels on film

Wheels & Crutches & Canes, oh my--why I bother to research an old movie actor

This is a cross-post form my other, much newer blog: Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively. It's on a member of the well-known Barrymore acting family (Lionel's brother John is Drew Barrymore's grandfather) who for the last quarter or so of his life lived and acted in a wheelchair.  His popularity never seemed to wane--and this was in the 1930s, ladles and gentlemints.

He was a damn impressive actor and a very interesting member of a stupendously complex and flawed family, and he also held his own while in horrible pain physically.  I wrote this to explain to my (few) readers why I bother researching his work and life, especially if they're not familiar at all with disability studies.

You might find it interesting, gentle reader! If not, well, I'll get back to being more morose on this blog soon! :)
Lionel Barrymore as Dr Leonard Gillespie, left; Lew Ayres as Dr. James Kildare, right, The People vs Dr. Kildare, 1941

Tuesday, July 26, 2016

Cross-post from my new blog: Lionel Barrymore, wheelchairs, acting, oh my!

Over at my new(er) blog, Barrymuch, Barrymore, Barrymost: Lionel Barrymore, obsessively, I recently wrote a bit on wheelchairs, Mr B, and film and whatnot. For those who don't know, Lionel Barrymore remains one of the very few actors who had a long career even after he required a wheelchair starting in 1938. He rolled an awesome path for people to get their brains around a person in a film who actually used a wheelchair, but oddly, the 1950s (Mr. B died in 1954) seemed to roll back some of the positive forward motion he all by himself had made in representations of disabled, wheelchair using-folk in film. He seems to have single-handedly pushed aside all kinds of barriers and his films and he himself were wildly popular, starting in 1938 with Young Dr. Kildare--indeed, House, MD seems to have ripped off the cranky, disabled diagnostician routine whole cloth from Barrymore's Dr. Gillespie!

Mr. B had no pretense of being any kind of hero or "supercrip", but really felt driven to keep working and had a studio (MGM) whose head both personally like Barrymore and who wasn't stupid enough to think he could let such a good, popular actor slip away.  Once in a while, extremely rarely, he would use crutches in a film, and could use them if he needed to in daily life, but he truly disliked them. I am utterly fascinated by him and his acting, and yes, his work before 1938. Fascinated person.

If you're wondering how he got to BE in the wheelchair-- you should go read the bio, etc on my blog!    Brief biography of Lionel Barrymore*
 *yes, he's Drew's great-uncle; his brother John was Drew's grandfather

Weekend Wheelchair Musings

Astute readers probably noted I mentioned I have a blog on MS. That's because I have relapsing-remitting MS, Dxed 2009. I'm probably one of the lucky ones.  Now that I think about it, in a roundabout way it led me to Lionel Barrymore's acting, so I'm quite lucky! [Note: his brother John is indirectly responsible for my grad degree...more on that later!]


In reading about LB and his chair, what I found interesting is the Kildare films were done so well (Bucquet directing very nicely many) the wheelchair became almost irrelevant to the plot. Now and then, we are reminded of the good Dr. Gillespie's need for it, but the doc himself is never an object of pity. We learn very quickly there's nothing to pity about Dr. G!

There are the typical "hero" disabled person moments spoken by others, as when an aside is used to "prepare" people who are about to meet Dr. G for the first time,  along the lines of "he's brilliant, but his legs are hopelessly crippled". They become fewer as the films continue.  I've seen that used in just about every film with someone in a wheelchair who has a major part.  Now,  I can see the need to establish the background story quickly,  but seemingly,  given the popularity of the films, LB was the attraction,  and the fact he was acting circles around people while IN a wheelchair meant his skill "normalized" for viewers a person in a wheelchair.

 I'm not claiming he did this all on his own, or that he even meant it to happen. He does note he's a good "jockey" in his chair and doesn't mind answering or forwarding to his chair manufacturer letters from the public about it.  Others, including Ronald Reagan,  noted the already skilled scene-stealer would use his "chromium contraption"* to great use in dominating a scene--even smacking into people's shins with the wheels. LB is absolutely masterful in the films in the way he moves his chair to emulate what he'd likely be doing on two feet. It's really astonishing.

I think without LBs incredible talent, a shift in the audience's acceptance of a character in a wheelchair who actually USED a chair in life would not have happened. How many actors in wheelchairs who really need them can you think of? I think the financial success of the films testifies to the acceptance of Dr. G and he seemed to walk-off, if you will, with just about every Kildare film. Gillespie was only ever stopped by his own exhaustion.  That I can also appreciate,  being a cantankerous,  stubborn type myself.

Intriguingly,  LB really disliked being photographed using his crutches to get around. That was interesting! I've only seen one pic of him using crutches outside a film. I'll likely not post it,  but I found that reluctance interesting.  When I have to use crutches or, very occasionally my wheelchair, I brace for questions and that stupid, inane "poor thing" voice. So I developed a response that,  while I have yet to use it,  I think will halt any probing. When asked "what happened?" (recall my MS comes & goes, sometimes day by day), I want to reply "they never took the bullet out of my spine".  Ha!

There's a lot to ponder on this, and I still need to finish coding the Kildare/Gillespie films! I'm not only intrigued,  psyched, even inspired,  but also in awe of Lionel Barrymore for his persistence.  Seriously.  Chronic illness as he seemed to have had is a pain in the ass, a huge no-no in our world today too unless you "rise above!" it and are a "supercrip", to use a phrase used sometimes in disabled folk's writing as shorthand for "the person who lost legs/lost half a brain, etc, but rises above all and competes in the Olympics."  The most recent of that type apparently killed his girlfriend in South Africa. Yes, there's an occasional dark side to my bloggish humor.

Do I think LB would mind the bleak humor? Not at all! I'm looking forward to exploring this much more,  too. Meanwhile...thank you, Mr B.
The grand old man, Key Largo, 1948. LB's disability is used to effect in the film.
* "chromium contraption" was what LB called his chair in a neat postscript in the first Ayres/Barrymore film, Young Dr Kildare.  He and Lew Ayres appear at the end of the film as themselves. Funny bit, too.

Friday, July 08, 2016

The (too) long hot summer

Yeah. It's hot out this way.  A spring during which we almost drowned with rain,  and now a stupid-hot summer. No, not as hot as Yuma, AZ, where I lived 7 years.  But still.  Fricking hot.

After my two-month relapse from May, I've managed to get severely overheated once, in St Louis at a conference, and mildly overheated a couple of times.  I've caned about a few times,  but now only have a cane and crutches in my car.  I presume the tecfidera is doing the job,  but I'm unnaturally fatigued always now. The hardest part of my work year just ended,  though,  and I'm anticipating catching up on sleep,  oh, by the end of the year!  Nope, I'm still not being very good at taking the Tec like I'm supposed to.  It still occasionally will give me stomach problems.

Interestingly,  and it's something that may change future treatment,  my oldest brother was just Dxed with RA. That makes our mom, him, and me all with diagnosed autoimmune problems.  She had the milder form of scleroderma. Now,  they are wildly different,  but still immune system issues. I kind of wonder what genetically we are carrying about. They are five of us siblings, and two have some autoimmune problem.  Hmm. Yet another thing to research!

My Barrymoring also carries on. I need to focus on finishing the film coding soon and figuring out how to narrow my focus. I'm still utterly fascinated by his life and acting.  So I will leave you with,  yes, Lionel Barrymore,  ladles and gentlemints!
As Andre Dakkar in The Mysterious Island, 1926/29. Purr...