Magazine Monday: Jamie-Lynn Sigler

Hey longtime readers, remember my little "Magazine Monday" series? Well, it's back, at least this once. In a recent issue of Health Magazine, there was an article about actress Jamie-Lynn Sigler, mostly about her having MS. I'm pretty clued into pop culture, but I had no idea who Sigler was before hearing about her having MS earlier this year. (I never watched The Sopranos, which I think is what she's mostly known for.) I'm somewhat cynical about how much "awareness" really matters or makes a difference (even though I mostly believe it does, and certainly wish I had been more aware of it before I was diagnosed) but every time a celebrity comes out about their diagnosis, I'm somewhat pleased that the disease is peeking into the national conversation at least for a few minutes.

Most of this article was ultimately a positive thing for MS awareness, I think. But one statement Sigler makes kind of alarms me:

There are so many options now - infusions, pills - that really help with the progression of the disease. When I finish this movie, I want to start a blog or YouTube channel where I can be a guinea pig. If I try things and they don't work or they help, I'd love to be able to share that information with people.

On the one hand, a celebrity with MS taking to the web to talk specifically about MS would be a great thing. We'd welcome her to the blogosphere or YouTube. But the idea of being a "guinea pig" and trying various treatments to "help" us is very troubling to me. I'm trying to give her the benefit of the doubt and just chalk it up to being a poor choice of words. If she is going to take to a blog or YouTube to talk about her specific experiences with MS and with trying different drugs (under the guidance of a doctor) and without trying to offer medical advice, that's great. But the way she puts it here doesn't sound like a good idea, for her or the people she thinks she'll be helping. After all, with MS especially, what works for one person with the disease very well might not help at all for another person. I do like reading about people's experiences with MS drugs, but I don't count one person's experience as the ultimate truth, nor should anyone else. And we already have "guinea pigs"  in the form of carefully controlled clinical trials. So go ahead and blog or vlog, Jamie-Lynn, but please please please don't be a "guinea pig" and don't think that we're looking for a celebrity to be our MS guru. We'll take you as a role model and beacon of hope and advocate, but not as a source of sound medical advice.

Magazine Monday: On Diet

a past CSA share from my awesome CSA farm

Diet and its potential role in causing/treating MS is a controversial topic, and one that tends to make me somewhat angry. Why? The various diets are generally presented as amazing miracle cures, yet there are always plenty of people who try the diet and it does nothing for them. Also, the core aspects of many of the popular diets are EXACTLY HOW I'VE ALWAYS EATEN! Yet, along came MS anyway. Perhaps if I ate a typical American crappy diet full of processed foods and lots of meat my MS would be much worse? Or maybe diet doesn't have the HUGE role in MS that some of the devotees of various diets would have us believe. Don't get me wrong - I certainly believe diet plays a significant role in our overall health and well being, I just question how much of an impact it can have on MS in particular.

The Fall 2014 issue of MS Focus featured interviews with 2 of the popular MS diet leaders. The Wahls Protocol, led by Dr. Terry Wahls comes with a pretty remarkable story. Dr. Wahls gave a TEDs talk about how her extensive research and then overhaul of her diet took her from having to use a zero-gravity chair and dealing with severe fatigue and brain fog and being considered secondary-progressive to pretty much regaining all of her abilities. Her diet is based on the Paleo diet, but goes beyond it by adding and carefully tracking 36 vitamins, minerals, fats, and antioxidants. The diet consists largely of leafy greens, sulfurous veggies, deeply pigmented foods, grass-fed meat, wild fish, and seaweed. The fact that she is a doctor and did so much extensive research and continues to test her diet extensively gives this diet more credence. However, I'm skeptical about its powers. That she could go from point A to point B just from eating this way (though she also did other things, like neuromuscular electrical stimulation) seems pretty unbelievable. Not that it happened for her, exactly, but just the idea that the diet would produce this same kind of effect in others. I'll continue to follow this, and I am curious to read her book, but I need some convincing to jump on this bandwagon. I've got the veggie side more than covered, but I eat almost no meat and I'm also not a fan of most fish and seaweed. I also eat whole grains, which aren't a part of her plan. I'd be willing to give this diet a try, if I am convinced by the book and/or further research.

The second diet discussed is Dr. John McDougall's diet. I'm pretty sure that he is not an MS patient himself. This diet is in many ways the opposite of the Wahls Protocol, in that starches (beans, corn, sweet potatoes, rice) are hugely important. The diet is generally vegetarian, and also involves eating plenty of veggies and some fruits. He's also done plenty of research and has led over 10,000 patients in it. His studies show significant positive impact on reduction of fatigue, in particular. There is no evidence to support the idea that this diet reduces disability or shows changes on MRI. This is the interview that really pissed me off, because this diet is pretty much exactly how I eat and have eaten since before I got MS. McDougall goes so far as to basically suggest that eating poorly causes MS, calling it a disease of food poisoning! I can't even begin to tell you how upset this statement makes me!! This diet is great, and good for your overall health, yes. That this diet causes and can treat and "reverse" MS is total BS.

P.S. Posts 2 days in a row? Woah, will this trend continue?! Time will tell.

Magazine Monday: Dangerous Language

from the June 2014 issue of Good Housekeeping

I have a pretty big issue with this story from Good Housekeeping. Language is important, and it can be dangerous. I get it, it's a great headline - "How I dropped 165 pounds, beat multiple sclerosis and found love" - but is it truly accurate? Beating something in this context generally means fixing it completely, curing the disease, getting over it, moving forward without it. Did Tabitha do this? No!!

The supposed miracle solution Tabitha used was adopting a healthy lifestyle, including improving her diet and adding an exercise regimen. Great! I'm happy for her, and I think this should be a part of absolutely everybody's life, whether they have MS or not. But the dramatic improvements to how she felt after losing 165 pounds - and the fact that she wasn't currently experiencing any flareups - did not at all mean that she had beat the disease! It did not mean she was cured! In fact, at the very end of the article, she admits to "experiencing occasional aches and tingles." She still has MS, and who knows how the disease will progress!

I could go into a secondary rant about Tabitha's decision to completely stop any kind of MS drugs, and her statements suggesting that a healthy lifestyle is slowing the progression of the disease, but I will refrain. I don't judge or begrudge her personal decisions, and I'm happy for her success and happiness. How to manage the disease is a personal decision and I don't think there is one right answer for everybody.

If I were to go into a secondary rant, it wouldn't be about Tabitha and her decisions - it would be about the danger of this kind of story in a major publication, without some well-rounded perspective. I think this kind of article, with it's sounds-too-good-to-be-true copy is dangerous both for people with MS but also for the general public who don't have any experience with the disease. There are enough well-meaning but clueless people out there who constantly suggest to people with MS that they should try a low-fat diet or an emotional cleanse or some other kind of maybe-helpful-in-some-general-way-but-NOT-A-CURE piece of crap. I'd just like to see an article in a magazine like this that tells a more helpful story about the disease. It's a subtle thing, but the language chosen to tell a story is SO IMPORTANT!!! Okay, end rant.

Magazine Monday: Vitamin D and Iran

Interesting article in Smithsonian Magazine about the Vitamin D & MS connection in relation to some interesting statistics. During the time after the Iranian Revolution in 1979 - when the mandate for modest dress and head coverings was instated - the rates of MS in Iran skyrocketed. The rates of MS increased by almost 7-fold over a 16-year period, and tripled during the just 4-year period of 2005-2009! Better diagnoses is likely explanation for part of this jump, but certainly can't be enough to fully explain this huge increase. In the article, one Iranian research speculates that an Iranian genetic tendency for MS is exacerbated by the severe lack of vitamin D caused by the clothing mandate.

The full article can be read online here.

Magazine Monday: admirable motivation

I featured Ann Romney from last year's Fierce List from More Magazine. This year, I'm featuring another fierce lady from this list: Misty May-Treanor. The beach volleyball superstar has a pretty cool motto. Play for all those who can't, the sick, the disabled.

As I've talked about a few times on this blog, my experience with losing the ability to walk and otherwise use my legs appropriately, had a big impact on me. I think the human body and what it can do when it is functioning properly is pretty darn amazing. As in, miraculous and very much worth celebrating. I try to keep this mindset present as much as possible, now that my legs do basically work. And I've been trying to use this as a motivation for using them - for walking, for working out, for pushing myself. I am planning to crystallize these thoughts into something more concrete, but I love the idea of exercise and physical mastery over tasks like sports and endurance challenges being done because they can be done. Running a race because you can run, and so forth. This is the spirit of May-Treanor's motto and I really admire and appreciate it. Thoughts?

Magazine Monday: Ann Romney

I try to tune out much of the political scene, beyond researching the issues that are important to me and knowing generally where relevant candidates stand. I find politics and the associated media circus to be an energy sucker. I hate all the negativity and general ridiculousness. Beyond reading headlines, I'm pretty out of the loop when it comes to the current presidential campaign situation. So I was pretty surprised to learn that Ann Romney has a MS, a fact I discovered in the brief profile on her in a list of fierce women in MORE magazine. (Which is an awesome magazine! It's for the "mature woman" which is a bit beyond my demographic, but I find it to have much more substance and relevance than most other women's magazines.)

from May 2012 MORE mag: profiles of fierce women

Anyway, Ann has MS and I suddenly find her more interesting. Will I follow her husband's campaign more closely? Probably not. But if any of the headlines I browse reference Ann and/or Mitt + MS or healthcare in general, I might just click on and read. Here is a brief news clip of Ann discussing how MS and fatigue have affected her on the long, tiring days of the campaign trail:

Magazine Monday: interesting ad campaign

I nearly passed by this ad in the March issue of Shape magazine, assuming it was related to fashion or something I don't particularly care about, but in the middle of turning the page I read the tagline and stopped for a closer look.

Live with boldness. It's time to rethink multiple sclerosis. fearlessms.org

Interesting ad campaign, eh? I examined the website, and it appears to be an offshoot organization of the Multiple Sclerosis Foundation. The Fearless MS site is pretty basic, consisting of a concise description of the disease, an open letter from MSer Laura Mann about her experiences with MS, and some calls to action for donation including the suggestion that brides and groom request donations to the MSF in lieu of wedding gifts. Of note, the model in the ad photo, Shannon Rusbuldt, heads the charity event Fashion's Fight Against MS.

I just checked out the Fearless MS facebook page, and I see that there is a second ad just coming out in some other magazines, this one featuring a bride:

Overall, I think this is a great move by the MSF - getting great visibility in the high profile publications they're working with and using a punchy, hip, youthful vibe to grab attention and hopefully dollars for the cause.

Live with boldness! I'm trying.

Magazine Monday: an extremely irritating quote

I adore O, the Oprah magazine. I particularly love that books and reading are so highly valued in the publication. Several pages of each issue are devoted to book reviews, and there is also a monthly feature wherein a famous person shares what books have made a difference in his/her life. I seem to add at least one - and often, several - books to my To Read list after finishing an issue of O.

The January 2012 issue reviewed one book I will NOT be reading, because of my intense irritation towards the novel's main character. The book is Leigh Stein's The Fallback Plan. The plan spoken of in the title is to develop a chronic illness. Yes, you read that correctly - developing a chronic illness is the goal.  Main character Esther (an onviously entitled, unemployed college grad) states, "of all the plans I could have made for how to spend the rest of my life, this seemed the most desirable because it required the least of me."

That's how we all feel, right? Such luck to be chronically ill! It requires so very little of us, right? And it sure is such a great excuse to not have to live a real, hard, scary, grown-up life, right? Bite me, Esther.

Magazine Monday: a poetic disease description

Today's Magazine Monday feature comes from one of my favorite magazines, The Sun (not to be confused with the British tabloid of the same name). It is completely ad-free, full of beautiful, wonderful writing on a large variety of meaningful and interesting topics. It's expensive, though, so while I just indulged in a free sample issue I cannot afford it right now. I hope to subscribe again at some point in the future, though, and I would love to be published in this publication someday.

In the essay Bruised, Joe Wilkins meditates upon the body and its fragility and meaning after getting elbowed in the face during a basketball game. Midway through this richly evocative reflection, Wilkins writes about his brother:

"People pass by us each day and read our bodies, marked like great ash trees - pearl bark ribboned with hearts and arrows and what all else - and wonder.

Consider my brother, who some years ago was diagnosed with multiple sclerosis. MS is an autoimmune disease, the sufferer's own immune system mounting a furious and deleterious insurrection, scraping away the myelin that insulates neuron connections in the brain. My brother woke one morning and was blind in his left eye, the whole left half of him gone shifty and slack."

The brother and his MS are minor, passing characters in this essay, but I think the above description is quite lovely. I'm a sucker for words well combined, even when they are describing something I don't like at all.

Magazine Monday: Playing the Result

The above picture is a shot of the Letter to the Editor page in a recent issue of  Good Housekeepingmagazine. A previous issue had included an interview with Michael J. Fox and the writer of this letter talks about being diagnosed with MS and adopting Fox's motto of "Don't play the result."

I'm a big fan of Fox and would recommend his memoirs (such as Always Looking Up: The Adventures of an Incurable Optimist) to anyone, but perhaps especially to people dealing with chronic illness. Anyway, I LOVE this idea of not playing the result. So you have MS and might one day be in scary place X, but that doesn't mean that you should plan to immediately take up residence there mentally and emotionally. Fox has Parkinson's, but he doesn't play that role in his life - he continues to play roles of husband, father, actor, advocate. I know I'm sometimes guilty of playing the result, so I'm glad Linda McEwen took the time to write this letter to GH that happened to jump out at me and make me reflect on those wise words. Don't play the result!

Incidentally, this same issue featured an interview with Meredith Vieira in which she talked some about her husband Richard's health, including the ways she thinks it has improved her children as people to have a dad with MS and other health problems. I'm also big fans of Meredith and Richard, and I'm pretty sure they don't play the result either. How about you?

Magazine Monday: Pain in Poetry

I've been using this little scrap as a bookmark for quite some time, meaning to use it for a Magazine Monday post. It's a letter to the editor response to the Time magazine issue devoted to pain that I've discussed previously here and here. I agree with the writer of this letter that Emily Dickinson's few words hit the pain experience right on the head. 

Pain has an element of blank;
It cannot recollect
When it began, or if there was
A time when it was not.

Magazine Monday: Time Mag & Pain, Part 2

As I noted a few weeks ago, the March 7, 2011 issue of Time magazine was focused on pain. Since nerve pain is a major part of my particular MS package of never-ending delights, I found the issue to be very interesting. The most substantive article in the special issue was Alice Park's Healing the Hurt. Park summarizes pain and points out how vital and necessary a function it is. Until it isn't. She then describes this scenario (when pain is chronic and not an important signal to stop whatever is causing it) and points out its less-than-pleasant-ness: "persistent, unceasing torment." True dat.

The bulk of the article, though, is positive and hopeful in its overview of new research into understanding the complex processes involved in chronic pain and in new treatments. I found to be particularly intriguing the idea of a biofeedback-like process using fMRI technology. A major potential upside to this kind of treatment is that it is non-pharmaceutical so it lacks negative side effects and the potential for addictions. I'm not sure how much of my brain fog to attribute to my pain drugs as opposed to just the MS, but I often daydream about the idea of not having to rely on meds to control the pain at all and thus not having to deal with any of their side effects. Beyond the brain fog, which is bad enough, I'm tormented by dry mouth which is a pretty major issue since I play a brass instrument for a living. I also think that the more body and mind-body awareness a person can have, the better, so I love the idea of retraining neural pathways to lessen pain.

Also discussed is the so-called talking cure, rightfully connecting pain and emotion on both a neurotransmitter and human level. A cure? No, but like meditation, I think therapy or any emotional outlet is an important line of defense to consider. I'm also a big believer in positive distraction, from art to media to people. If the pain's at its worst, I can't really be distracted, but most of the time, healthy distraction goes a long way.

Also worth noting from this issue is John Cloud's article Beyond Drugs which deals with CAM approaches to pain management such as massage, acupuncture, herbs, yoga, and qigong. With the possible exception of herbs, I'm all for CAM approaches to dealing with pain. Yoga, qigong and meditation have been helpful for me. I've not tried massage or acupuncture, though I'm intrigued by both and would like to try them at some point.

I just thought it was great to see a major media outlet like Time magazine deal with this issue in such a prominent way. I'm eager to see what transpires in pain research, especially with nerve pain.

Magazine Monday: Time Mag & Pain

Time magazine did a special double health issue focusing on the subject of pain way back in March, and I've been meaning to write about it ever since. Well, better late than never!

March 7, 2011 issue

As you may or may not know, nerve pain is a major part of my MS experience and very much affects my daily life, so these articles were very much of interest to me.

In The End of Ouch? by Dr. Mehmet Oz, the emphasis is that chronic pain is a serious and major problem, even a disease in and of itself, but there is hope because it is starting to be recognized in a new light. He suggests the following advice, something that I know has helped me:

Meditation may benefit chronic-pain sufferers by reducing the emotional impact of their condition. A settling, transcendent state puts the pain in perspective and helps it dwindle in importance. 

He points the way to this relaxation guided meditation exercise video from the American Chronic Pain Association. I think guided meditation like this can be helpful, especially if you're new to meditation, although I don't find this particular exercise to be all that worthwhile.

I would also recommend this exercise by the wonderful Pema Chodron, an example of Tonglen meditation. I love the idea she presents of changing pain into compassion.

I've had a consistent meditation practice on and off over the years, and I really want to get back into it and make it a regular part of my life. I try to practice life in a meditative state as much as possible - to live in the moment. My pain constantly calls attention to itself, and I've had to learn to accept this. Even though I feel the pain, I've gotten to a place where I can just be with the pain without letting it control me. Unless the pain is at its worst - when it is, all the meditation exercises in the world aren't going to help the constant loop in my brain regarding how bad my feet and legs feels. But meditation generally helps. Whether you deal with pain or not, give it a try!

I'll be back next Monday to deal with the meatier article in this issue of Time on pain which I seem to recall had lots of stuff I want to comment on and share.

Magazine Monday: lol

I was pleased to see this article on laughter yoga in the most recent issue of MS Focus magazine. I've always wanted to try laughter yoga, and would love to take a class sometime. I love laughter and I love yoga, so I love the idea of the combo. Even though at least some of the laughter would be fake or contrived, there are many proven benefits of "putting on" certain feelings - and often the feelings become genuine in the process. How can you not feel some joy when watching the following video, just one of many examples of the practice I found on youtube...

I'm pretty sure my niece would totally dig the practice, too, so I think I'll try doing some of these exercises with her the next time I see her. Have you ever tried laughter yoga or would you like to?

Magazine Monday: Cool Sheets

Here's a little blurb from the May 2011 issue of Shape magazine. Not directly MS related, but since both heat and sleep can be contentious for many of us, I thought it was applicable. The image probably isn't too readable, so I'll summarize. Basically this lists three new products for ensuring a cool night of sleep. Sheex Sheets: sound really nice, but far too pricey for me right now. The Stress Ease Comfort Reader Pillow delivers some chill to your neck - sounds like an item I'll add to a gift wish list. Brookstone's Bed Fan: blows breeze under top sheet - could be great, could be annoying. In any case, three products that may be beneficial to some of us!

Any tips or products that you use for staying cool at night and getting some good sleep?

Magazine Monday: Violet Fruits

This blurb from the May issue of Self suggests that eating violet fruits like blueberries and plums could prevent MS because they prevent the production of hydroxyl radicals. Haven't heard this one before, so thought I'd share. It doesn't say so here, but I'm sure it can't hurt to eat them for those of us past the prevention stage...good thing they are delicious!!