How do YOU celebrate World MS Day??

...apparently I do so by forgetting I had a workshop to present to my students. SRSLY. I think I looked like this when I realized:

Lionel Barrymore as insane Prof Leroy in The 13th Hour, 1927

I am really very good about reminders, calendar use, etc, but this just slipped away on some puckish malfunctioning synapse.  Well, that and I stayed up talking to my sister for six hours and went to bed at 4am.  The struggle is real.

I am sort of laughing it off, but since I also forgot to take my Tecfidera this morning, I realize I need to reassess my planning and coping skills and slow the hell down.  I think that's how I'll celebrate World MS Day--slow down.

My sister and I talked a great deal about how we both kind of bulldoze through whatever needs to be done. She was there with me when I got my MS Dx in 2009, and we both did our own coping thing--me saying "well, ok, what now?" and getting right into a clinical trial. I have no doubt that trial (for Ocrelizumab, soon to be approved) saved my much-overinflamed brain. And really, MS gave me no choice then, sooo..

But it did slow me down in some ways, and after my 2 month relapse which started March 5, I was reminded forcibly that yes, I'm sick, and yes, it's not going away, and yes, you will need to find time to rest and slow the hell down. I've been quite fortunate, but it feels like I probably did work myself to the point of needing to rest, perhaps ignoring enough to slip into a relapse--some of y'all know the feeling.

So this World MS Day, I'm grateful for my awesome job and awesomer boss, for a good enough brain so that enough synapses take up the slack for the burned out ones, and that I do have a sense of humor about it all. Now, what I need is a personal assistant to force me to sleep and/or rest. That would be the "most perfectest" Rx ever.

Enjoy the day, slay your demons, and smile as you plow through the obstacles. Then nap. Srsly.

Super crips and side effects: LB= Little Blue pills and Lionel Barrymore

Caption for above: "I'm not her father! YOU are!" Lionel Barrymore's character (rt) to Lon Chaney's in West of Zanzibar, 1928. Ironically, Chaney did not end up in a wheelchair--but by 1928, Barrymore was constantly requiring painkillers and not in great physical shape.

So Tecfidera (little and blue!) has proven, at full dose, to be QUITE the pain in the intestine. I've never had stomach side effects,and taking two doses a day has killed me. I'm down to one a day because I can almost tolerate it IF I remember to eat a high-fat, high-calorie breakfast (and I've lost about ten pounds over a month and a half). Managing to keep something in my stomach all day has not been successful.

Now, does it work? Per my neuro at last appointment last week, yes, it does. March 5th I was using crutches, then I had a week on crutches, cane, and wheelchair, then started Tec...and I can walk, hallelujah!  I begin to think when my gut knots up that hey, crutches aren't TOO bad, right? I can't wait for Ocrelizumab to come out, hopefully December!

So what I did in part those 2 weeks or so I hid out by the bathroom was watch Lionel Barrymore films of all kinds, not just Kildare/Gillespie, and start collecting articles and clippings, especially reviews, of his films. The most astonishing thing is I'm having a hard time determining which wheelchair he used! I know it could only be one of say two companies, but I can't find the patent for the specific chair! I'll need to visit our local Military Medical Museum (Fort Sam Houston) to see if they can help, but hey, here's a good pic of LB in it if anyone knows:

Circa 1940 (his crutches are behind) Note the unique rear caster axle set up. This one folded.

I know the first real metal folding chair only came out in 1938 or so, by E&J, but this one does not appear to be a standard E&J from the period. It's the rear wheel set up that stands out. I now it had ball-bearing wheel axle/hubs, which would have made it remarkably maneuverable. Perhaps it's a Gendron? My own (older, used) folding chair with ball-bearing shaft/axle is MUCH easier to use than the brand new one I rented without similar wheels. It was bought by a friend for me, and is probably from the 80s, but in fantastic shape. Right now I live with a cane, a set of crutches, and a folding wheelchair in my car trunk.  It's a Multiple Sclerosis life!

But doing research on Barrymore's life and adaptability to his need for the wheelchair has been a great distraction. Certainly there's a quantitative article in it--after I'm done watching and coding the films for whatever, I'll be able to show a certain pattern or prevalence of disability "visibility". Having access to most of the films' box-office records tell me that the films (Kildare/Gillespie) were ENORMOUSLY popular.  Barrymore himself seemed to deal with the need for the wheelchair pretty practically, though I'm still working on finding correspondence about it. I know he was a kind of Celebrity Chair of the National Arthritis Research Foundation when it was established in the 1940s.  His bio makes it clear he made the very best life he could--adapted car, crutches when needed, and a studio pretty willing to accommodate the needs of their best character actor. Still, he was in a great deal of pain from joint inflammation ( and possibly poorly healed hip fractures) from the 1920s onward, and severe joint swelling and alteration structure is apparent in his films from the 20s on, especially obvious in his left hand.

Certainly from 1938 onward Lionel Barrymore did not exactly slow down in his career. He made about 35 films from 1938 to 1953 in a wheelchair or on crutches if we count from Young Dr. Kildare onward (leaving out You Can't Take it With You, A Yank at Oxford, etc from 1938 and start with the one role written for him in his wheelchair). He also narrated several films and of course was on radio extensively from the 30's onward.  Throughout Down to the Sea in Ships (1949), he was using crutches (which he claimed to hate in real life, though he did use them now and then) and has a few frighteningly active scenes his double could not do thanks to the need for close-ups.

I'm not sure what makes some people thrive under very rough situations, as Barrymore did. I myself don't have many choices on not doing as well as I can--right now I'm the only one in the family of two working, as my spouse is mid-cochlear implant-process and we hope to get that surgery done in June.  I tolerate certain kinds of pain very well, but others, like the stomach problems, I really have a difficult time with. The week I was quite unable to walk because my legs weren't behaving, I found crutches a little less a problem than a wheelchair, but also, I was acutely aware one causes more distress than the other in public. I work with only 25 very talented students and I know it's easier to see me one day walking and the next on crutches than a wheelchair.  I am able to laugh most questions off, and on crutches everybody thinks it's my ankle that's the problem. When I say "It's my brain," I think most don't even hear it. I try to say "It's a long story." My favorite lie that I have yet to really use is to frown and say "well, they didn't get all of the bullet out of my spine."  Seems, unless I'm talking to a physician, to be a sure question-stopper.  I don't want to be either a crip role model or a "poor thing" object of pity. Few seem to manage a balance between seeing me and seeing my assistive technology when I need it. But I'm a stubborn cuss.

While I think Lionel Barrymore did not credit himself with much in the way of role model-potential for people with disabilities, he certainly fielded many questions about his own wheelchair use and make, and he seemed comfortable with his life. His films rarely even made the chair a part of the story, though the Kildares sometimes gave him a chance to puncture pity-balloons. I think his persistence, ability, and some good writing meant he smoothed a path for wheelchair users in the US, and I think (and my thesis is) that the popularity of the films and him personally meant returning disabled vets of WWII experienced a different reception than those of WWI. That's what I'm aiming to prove, in any event.

I don't know what kind of crip I will be in the next ten or twenty years, and it's a term I use as an on-and-off gait-disabled person. The title of the blog pokes fun as well, and on Facebook I am "She who gimps between the rows". It's tongue in cheek, but the slow process of becoming a SuperCrip is more arduous than perhaps I anticipated when I was diagnosed with MS 8 years ago. By that point, I'd been using a cane for almost two years. I'd almost lost my sheepishness about it--almost.  I can really fly along on crutches, though they can be a pain--did you know you can order custom wood crutches made on the same crutch wood "molds" used for Civil War-era crutches? Me neither!

I do think it would be helpful in the extreme to enter into criphood with great insurance, great support, a good salary, and a very flexible job and partner. And a lot of humor, determination, and sometimes straight pigheadedness to adapt well.  Do what you have to to make money, thrive, survive--be creative. As Lionel Barrymore once wrote, "Anyone can be an actor. And if you need five dollars, you can be a writer too."

Who knows? Perhaps one day my supercrip jottings will go platinum and I can sit on my rear and write and research to my heart's content!  But however, I do have insurance, a good job and great boss, and my mind is intact enough to still research all I want and hopefully write some.

And sorry, but you'll have to put up with more Barrymore-ing as I work my way through this article. I'll try to add more specific to MS and Tecfidera, but it's hard to say  a lot more than DAMN both bite!

Disability research can be fun! And so can tecfidera :)

...seriously, though, it can be. I've decided to work on an article (or two) on the impact of Lionel Barrymore's Dr Gillespie character in the 30s-40s Kildare/Gillespie series of films. There's been some work done out there on the impact Barrymore's wheelchair use in films (he worked almost exclusively in a wheelchair due to arthritic pain and injury from 1938 till his last film in 1953, one of the very few actors to actually be in a wheelchair and act) may have had on the "normalizing" of wheelchairs and users. Now, it seems the evil 50s undid some of that work on screen, with the return of evil/victim/"super-crip" wheelchair users, but I have to admit, the popularity of the Kildare series and Baryrmore's really high profile is something unique to the time.

Anyway, so it's been fun because I get to watch all 9 Kildare films and all 6 Gillespie films for quantitative analysis first (article 1), then take that and work up an article on the impact those films had on public perception of wheelchairs/users.  I'm very glad I can watch them on a computer so I can grab images to help explain what I'm trying to do.  Here's a couple:

Lew Ayres & Lionel Barrymore, Dr. Kildare's Wedding Day (LB did play piano and composed--one of his pieces is played at the end of this film)

First entrance of Dr. Leonard B. Gillespie in the series, in Young Dr. Kildare, 1938

I'm learning a lot about how much work went into creating the character and filming him--Barrymore had by this time been working at MGM for almost 15 years and after he had to use a wheelchair, he made 36 films, not counting narrations. He was considered both too popular and good to let languish, and the Kildare films were incredibly popular and profitable for MGM, which made 2-3 a year.

And besides all that, Lionel Barrymore was a great actor! It's been fun to watch the Kildare films and explore his other work. It makes my tired brain, which is finally coming out of a relapse, feel better.

To that purpose, the Tecfidera I started seems to be working out. I haven't had any side effects I notice, and my tummy is pretty much made of iron. I don't anticipate tummy upset. I'm not too worried about PML, especially since that month of relapse was horrible. We're still waiting on the ocrelizumab to be approved, which would be fantastic. It was a godsend when I was in the Phase II trial for it 8 or so years ago now (2009).  Even better if it helps PPMS too.

Off to work and do more coding and watch more Barrymore. Cute cuss in his time, too:

1929, The Mysterious Island

Newest tattoo, LB as Davidson in Sadie Thompson, 1928. I'll be getting his brother John as Hamlet on my other calf at the end of the month. Yes, I have a few tattoos, all of which I can if I choose cover up :)

HAPPY BIRTHDAY!! And grump, grump, grump...

3-21-16

My nephew turns 25 today! I'm glad he seems to be in good health, happy, a good man. Because his aunt is decidedly not.

In honor of MS Relapse Awareness Week, I apparently have decided to deal with my first real relapse in probably 7-8 years. LEGS aren't carrying me, lots of crutching, cane, even wheelchair use now n then since March 5. Doc has me in the old high dose cycle of prednisone, and I'll be trying Tecfidera as soon as the PTB of insurance and pharmaceutical companies do their magic.

I'll admit I'm quite frustrated, annoyed, bummed... At the same time this is going on, our admin is out still waiting to have her baby, summer work is revving, and I have three grad courses I'm trying to do. I didn't really feel anything coming on, but holy cow, I'm just not in a great place with this. Maybe it's just I feel I am so much older and I've been so much more tired.

So f**k you, MS. I want no orange butterfly badges, no attagirls, no questions, frankly. I think I'll just wear a shirt with an image of my two most massive lesions from 2008, on either motor cortex. Sigh.

What a horribly demented disease for someone in education, required and well trained to use a pretty fast mind to have. I mean, honestly, what a terribly demented disease, period.

MS AWARENESS MONTH AND I GET IT, I'M AWARE...

So for two years I organized a zumbathon to raise MS funds in March. This month, no such plans, but I find myself hyperaware of my MS.

I'd been doing fairly well, got off Plegridy because of really uncontrollable side effects, still taking adderall to cope with fatigue. but the last couple of days the fatigue has ramped up into lassitude and I can't even drive and sing along to music in the car because I get SO tired!  Walking is ridiculous, as it takes a huge amount of energy to go anywhere more than about 20-30 feet.

I'm trying crutches now, but they are jarring and it's still quite tiring.  Of course, having a job that requires thinking also wears me out. We will see if I make my night class tonight.

Ironically, I'm revisiting disability as subject for research, spurred by rediscovering Lionel Barrymore. He was in a wheelchair in films from about 1938 on, and did a whole hoop of films prior to his death in 1954.  I've loved his brother John since probably my early teens, but hadn't paid much attention to Lionel except in Grand Hotel until recently. I have been youtube-ing films and find myself fascinated by him. Quite a good, interesting actor. So I'll be looking closely at Key Largo (1948) and how his wheelchair plays a role in different ways. Already know another scholar has done wheelchairs in film and even got an nice response to my email to him. That was quite kind, actually.

I've already worked on John Callahan and Dr House, and I find it funny I knew about but didn't make the connections with Dr Gillespie in the Dr. Kildare movies of the 40s.  Once more, Lionel Barrymore as Dr G!  It's nice to have my brain focused on something specific. I do love research.

But OH, how I'm hating this terrific weakness/tiredness. We will see if the dr is up to seeing me or if I should just invest in that energy-saving wheelchair thing.

(Bogart, Bacall, Barrymore in "Key Largo", 1948)

Wheelchair Kamikaze: Bits and Pieces: MS Diversions: MUST READ!

Awesomeness of this blogger gets me... alwayz!



Wheelchair Kamikaze: Bits and Pieces: MS Diversions: Wow, I just checked and it’s been almost 7 months since I last did a “Bits and Pieces” post. These posts, compendiums of the latest and gr...

WOW it's been a long time...

.. so long so much has changed. I'm no longer on Plegridy-- frankly, the side effects were getting much in the way of work and relationships. I came within a minute of snapping at my boss, whom I adore, and I had already been  on the verge of throwing things at the S.O... and the joints had been a-paining me pretty badly. So I went off it in October, right after my birthday, and I feel much better. an MRI at the end of the year will tell me what if anything has changed. Fingers crossed for Ocrelizumab getting approved next year.

I'm enjoying the fall, though, even if my fatigue tends to be getting in the way of a lot of stuff. I'm only now realizing how very tired I am by the afternoon, even with Adderall to keep me up. Just keeping me awake doesn't mean I'm focused or better at thinking. I also dropped out of a research study on online games and cognitive skills-- I was nowhere near as cognitively disabled as many others, but that doesn't mean I don't feel every lost word deeply. I work with my brain primarily and always have, so the little things like missed words or forgotten trips to the kitchen are paining me an awful lot. I still do read a lot and quickly, but in conversation I feel much stupider.

Overall, I'm fully aware I have been much blessed in my relative lack of disability that can be seen. I have my crip placard and plates for parking, and I use them, as I have come to realize I damn well need to conserve all the energy I can in any way I can. I still have a bit of a limp and on and off use a knee brace or two, but the main issue I am concerned with is cognitive loss, which, apparently thanks to my loooong education ride and mental exercise, is not bad in comparison to others at all.  Well, tough, because when one DOES work with the brain as a major job tool, it's really easy to sense the tool getting rusty.  That has been the thing making me feel most old as I hit mid-forties. Sometimes I feel that if I could just need a wheelchair, I'd be able to cope with changes and frustrations better. There's nothing I can do for my brain I'm not already doing (yes, food, mental stimulation, vitamin D.. trust me, I KNOW the drill) so I think that's why the cognitive lapses are so frustrating. I plan on tying a paper organizer, smartwatch with alerts, my smartphone, and my outlook calendar all together to help me organize and stay on track better and with less "grrr!" moments.

We head to the holiday break busy but overall okay. Lots of vet bills recently, but that's the price I pay for being a cat parent and I would never not have cats! Wishing whoever might read this a peaceful autumn/winter season, Merry Christmas and Happy Hannukkah (to those celebrating), Joyous Kwanzaa, Happy New Year! (Cause at this rate, I'll update again in like, oh, March...)