Thursday, May 30, 2013

Carnival of MS Bloggers #142

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

by Rex Parker of Biking MS

A lot of you know that I ride Bike MS in honor of my late brother, Rick. But only a few of my friends in Boise were fortunate enough to get to meet him. So I thought I'd write a bit more about Rick this week, so that everyone could get to know him a little better.

First off - I had three older brothers, and had a very different relationship with each one. Here's the line-up...before you start writing comments about my cardigan, I should tell you this picture is 25 years old.

From left to right: Russell, Robert, Rex (me), Rick
I am the youngest, Rick the oldest. Despite the age difference, he was my best friend. Russell was closest in age to me, so of course we fought all the time growing up - and there's still some tension there today. Robert helped raise me as my parents farmed and held down second jobs. My relationship with Rob was more parent-child growing up, so that was often adversarial as well. That changed as I got older - Robert and I grew very close in our adult lives.

Rick, however, was always my hero. I absolutely idolized Rick growing up. Being the oldest, he was in and out of the house when I was a kid. His visits from college were the highlights of my year. I'd count the days until he arrived for a visit, and I'd cry when he left. Many of my best childhood memories include Rick.
Rick Parker, HS Senior Photo, 1975
One of those many memories is when Rick took me to see an R-rated movie when I was 8 or 9 - the first "Alien" movie at the drive-in in Terry, Montana. My parents told him not to, but he knew I wanted to go and snuck me out of the house to see it. I spent a good part of the movie on the floor of the car, scared to death. But I loved it. If my parents read this post, this may be news to them.

Rick also taught me how to shoot a basketball. If you've ever seen me play basketball, you'll realize I'm not doing Rick any favors by telling you this.
Rick fostered my love of reading - and his gifts of books were a constant throughout my life, starting at age 7 with a science-fiction art book that I have to this day. Rick was not a casual gift-giver, either - nearly every book I got from Rick has a hand-written inscription inside. Rick was a gifted writer, and majored in journalism in college. I treasure those books.

When Rick was crippled by MS, he kept the gifts coming. He once wheeled himself downtown several miles to meet Steve Earle (one of my favorite music artists) before a concert, at a book signing for Steve's first book, "Doghouse Roses." And then he wheeled himself home in the dark. All for a gift - not a birthday gift, not a Christmas gift - just a random gift that he knew I'd love.

Rick and I often liked the same books. Rick once read a book called "West With The Night," an autobiography of the first person, Beryl Markham, to fly over the Atlantic from East to West - and he knew I'd love it. Rick had a very hard time leaving the house in those days, and had no use for computers (no internet shopping for him) - so for Christmas that year, he inscribed and gave me HIS copy of the book.

I could fill an entire blog post with nothing but stories about Rick's giving. If he had $10 to his name, he'd want to give you $20. And he always wanted to provide the best for his kids.

Back to the pre-MS days...

When I graduated high school in 1987, I left home immediately to go spend a year screwing around with Rick in Missoula, Montana. Rick had just met his future wife, Earlene, and would soon be starting a family. I was driving a 1966 Chevrolet Biscayne that was on its last legs, so I biked a lot that summer. Having no bike when I got to Missoula, Rick set me up with a sweet old Schwinn Le Tour.

Rick's family from left to right: Travis, Rick, Earlene, Jeramy - around 1994
Rick was an avid road cyclist, and was starting to get more serious about it - he had just upgraded to a 1987 Schwinn Super Sport - which was a very expensive purchase, I'm sure, for a guy trying to finish college and working nights at a hotel. As many of you know, that Schwinn Super Sport is the bike that I rode in Bike MS Idaho last year (more on that bike later.) One of Rick's favorite events was TOSRV (Tour of the Swan River Valley) and he was also the top fund-raiser in the 1987 Montana Lung Association ride, where he won an early mountain bike - a Bianchi Grizzly. As I look back, many of the things I'm passionate about - craft beer, cycling, music, reading - are all things that Rick was passionate about as well. To say that Rick was influential in my life is an understatement.

Life moved on - I joined the Navy, then went to college (Go Bobcats!) Rick got on with his life as well - and seemed to ride less and less as he did all the things you do to start a new family - house purchase, raising kids, etc, etc. But cycling was never too far from his mind. As time went on, Rick and his family were a constant presence in my life. Many trips to Missoula, many concerts and other outings.

During my college years (1992 - 1997) there were some incidents that were, in hindsight, clear warning signs for MS. Rick would get awfully shaky sometimes after having a few beers, which I chalked up to age. Now that I'm the same age as he was at the time, I realize how ridiculous that was. Also, he would complain sometimes about his leg going numb while he was at work. For hours at a time. You'd think that would warrant a trip to the doctor, but Rick never went (to my knowledge) - and I don't think any of us were armed with the information we have now about MS, so I don't think anyone was pushing him to get it checked out.

After college, and a quick two-year stint in the Bay area, I moved to Boise. The proximity to Missoula (compared to San Francisco) was nice, and Rick and I got back to more regular visits, often around Montana State / Montana football games. One of those years (2002, I believe) Rick came down to Boise to spend the football game weekend with me. He seemed a bit off that weekend, and was particularly sick on Sunday. Then, after flying home Sunday night, he woke up Monday and found that he had completely lost vision in his right eye.

Things progressed swiftly at that point. The MS diagnosis came quickly - steroids cleared up his vision, and the fight began. It wasn't much of a fight, though. By the time he was diagnosed, the MS was pretty advanced. There were no significant remissions, and MS took him down steadily limb-by-limb. He went from a cane to a walker to a wheelchair within two years. Soon, it was hard to understand him, as MS took out his facial muscles. The eyesight would come and go.

There would be some brief respites, after steroid therapy, but they didn't last long. Rick would often schedule those right before a visit from my parents so they wouldn't see him at his worst. I think that the pain the disease caused his children and my parents affected him more than the disease did.

I should also note that we lost Robert to a tragic car accident in 1998 when he was only 37. My parents had already buried a child, and they were facing losing another. I will never be able to fully comprehend the grief this caused them. Rick understood this, though, and I'm sure it tore him up.

We lost Rick in August 2011. He was in a nursing home at that point, and had lost the ability to swallow on his own. He was getting serious infections, could no longer feed himself, and I think a breathing tube was on the horizon. Enough about that...

Maybe the worst effect that MS had on Rick was the depression that he fought. He spent some time on anti-depressants, but I don't think he liked them. Rick did not always take his degrading condition gracefully. The vast majority of the time, Rick was the same sweet, generous man he always was - but at times he could be very difficult to be around. I think he yelled a lifetime of profanities in those years. MS did that. MS took him from us, I think, long before he physically passed away.

I stayed in Missoula the week after Rick passed away, doing what I could to help Rick's kids with all the required arrangements. It helped to have tasks to focus on. At some point in the week, I noticed the Schwinn Super Sport hanging up in my nephew Jeramy's garage, and it appeared to be in great shape. It had been well cared-for all those years. The bike was just a bit too big for either of my nephews, so Jeramy asked me if I wanted it. I sure did.

Soon, I was riding that bike all over Boise, and having a blast on it. I hadn't ridden a road bike in years. For a long time, I was too fat to ride a road bike...but had recently cleaned up my act, was fit and raring to go. I don't remember where or how I first heard about the MS 150 bike ride, but the minute I heard about it - I knew that I wanted to ride it on Rick's bike. And I did. It was one of the most rewarding things I've ever done and I would give anything if Rick had been around to share the experience with.

Rick's Bike at Payette Lake, near downtown McCall, ID

Unfortunately, the old Le Tour and the Bianchi have not survived the years - but if I ever part with that '87 Super Sport it will have to be pried from my cold, dead legs. Thank you so much, Jeramy, for entrusting me with it.

I think often of Rick's and my last road trip together. I was fortunate to be able to take Rick to Glacier National Park in 2007. It was a great trip, but challenging, as I was an inexperienced caregiver. Rick was very patient with me that week. He was in his element in the Lake McDonald lodge - striking up conversations with everyone he could, joking and laughing as much as possible. In particular, I remember the night we ate dinner in the lodge. Rick had a very difficult time holding eating utensils at the time, and we were still trying to figure out how to make that easier for him. As a result, half of what was on his plate usually ended up on the floor. When our very eager, college-age waiter came over to serve us, Rick started laughing uncontrollably, and when he finally composed himself, said "This poor kid has no idea what he's in for tonight!"

Rick on the Trail of the Cedars, Glacier National Park, 2007
If Rick could see me struggle to write this blog post, he'd probably have a good laugh as well - and call me a "buffoon" - one of his favorite words. I wish I were as eloquent a writer as Rick, but this will have to do. And I'll just close by saying I think about Rick every day and would give up anything I own to have one more conversation with him. I know that won't happen. But if, through sharing Rick's story, I can help make life a little better for someone else affected by MS - I know Rick would be very pleased. And that is why I ride Bike MS.

This concludes the 142nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 13, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 11, 2013.

Thursday, May 16, 2013

Carnival of MS Bloggers #141

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Life with My So-Called Chronic Disease
In my kingdom of the sick, the emperor has no clothes
by Jennifer Glen

With one obvious exception, the word chronic never refers to anything good. Someone is a chronic liar or a country is in a chronic state of civil war. Or someone has a chronic disease. Like me.

Four months into my multiple sclerosis diagnosis—and four years since the first symptoms that caused a neurologist to warn me that such a diagnosis might be coming—it still feels weird to acknowledge the fact that I am sick. I don’t feel sick. Unlike those diagnosed with other chronic diseases, like, say, rheumatoid arthritis or Chrohn’s disease, I endure no pain from my illness. My symptoms—some mild slurring, followed by numbness on half my face—have only impacted four weeks of the last four years and, while annoying, were neither debilitating nor readily detectable to anybody I was interacting with.

In fact, the entire infrastructure of the disease has been far more annoying and debilitating than any of the symptoms. Navigating the various doctors’ offices, insurance companies, drug companies, and pharmacies that comprise the US healthcare system experience for someone like me—that is, someone who is lucky enough to have good health insurance—is not an activity fit for someone who has just been diagnosed with a disease. You are flighty and distracted and can’t remember to ask your doctor important questions, but that is the exact moment when the execution of your own healthcare requires you to have the steely nerves of a crane operator combined with the determination of a blood hound. Even when you’ve charted a course through that labyrinth, any sense of victory is diminished by a nagging concern over what it would be like without your prized health insurance and the eight months still to go until the pre-existing conditions clause of Obama Care kicks in. (To put a number on that anxiety, consider that the latest MS treatment, a pill that has more or less been around for twenty years to treat psoriasis, was recently released at a wholesale price of $54,900 per patient per year.)

Faced with this you naturally wonder, as do people who should know better, like your husband and your shrink, if you should even bother taking medication for your mostly invisible disease. Surely you are about to wake from the absurdist dream you’ve been having where you, a needle phobic, are now supposed to shoot up a medicine every Thursday that makes you feel like you have the flu for sixteen hours in order to treat a disease that is currently presenting zero symptoms. But then the second opinion neurologist, the one who is a foremost expert in the field, tells you in her calm Texas drawl that, yes, you have to take the preventative medicine; that first neurologist you saw wasn’t just making that up. Your disease may feel like a fraud now, but MS has the astonishing potential to morph from an annoyance to, say, paralysis, an outcome you don’t want to dice with much.

In her recent book, In the Kingdom of the Sick, Laurie Edwards writes about her experience growing up of frequent doctor appointments to treat what was eventually diagnosed as a chronic and very rare lung disease. She notes that she never perceived her experience then in terms of a chronic illness. Rather she experienced each incident separately, in a reactionary mode, and only as an adult did she make the emotional adjustment to acknowledge the long-term nature of what she was dealing with. This, she says, “is the most daunting aspect of any chronic illness, whether you are the patient grappling with a diagnosis or a healthy person who hopes it never happens to you: It isn’t going to go away.”

And she is right, especially the part about the healthy people. This explains why most my friends never ask me much about my MS. I am a living, breathing incarnation of what they hope never happens to them, and they’d understandably rather not talk about it. Frankly, it is a preferable state of affairs to those who do ask me about it because, invariably, these types want to know if I am going to change my lifestyle. This, of course, is just a polite way of asking me if I am going to drink less wine. I am not, both because I like wine and because drinking wine does not cause MS (I asked my neurologist). But as I once was, these people are desperate to believe that there is something I (read: they) can do to control bad things, like MS, from happening. Deep down there is some little part of them desperate to believe that there must be a reason (read: something bad I did) I got MS.

I am neither surprised nor angered by this reaction, but that is probably because MS has not yet, and hopefully never will, made me very sick. Just the other day I heard a reasonably intelligent person imply that the rise in women’s cancers is due to women letting themselves get burnt out. On behalf of the three women in my life who have recently lost both their breasts to cancer, I wanted to ring this woman’s neck, or at least buy her a copy of Susan Sontag’s Illness as Metaphor. Thirty-five years have passed since Sontag pointed out the lunacy of using romanticized language to create an acceptable way to blame the victims of disease and, yet, it is still fairly commonplace to hear people imply stress or bottled emotions or some other similarly nebulous thing is to blame.

I, however, am not blameless when it comes to hiding behind language to deal with my disease. In my book, Americashire: A Field Guide to a Marriage, I write about renaming the permanent lesions on my brain—the main physiological manifestation of my MS:
In the absence of any answers from science I turned to the transformative power of language. Lesions were for lepers or people with venereal disease. They simply would not do. Therefore, I decided I had les ions, pronounced lā-ē-uh, with a trademark French grunt on the last syllable. It still sounded vaguely scientific, yet at the same time foreign and alluring. And best of all, it made me feel, just for a moment, like I was in control.

Despite my wariness over the use of flowery language when it comes to illness, I am giving myself a pass on this one. I liken it to the same rule of the universe that makes it OK for me, but nobody else—especially my husband—to make fun of my immediate family. After all, MS is my disease, and I can call it anything I want.

This concludes the 141st edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 30, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 28, 2013.

Thursday, May 2, 2013

Carnival of MS Bloggers #140

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

This concludes the 140th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 16, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 14, 2013.

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