MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'blog community'. Sat, 03 Sep 2011 02:12:19 +0100 http://www.medworm.com/index.php?rid=3784435&cid=t_168520_132_f&fid=35024&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FBlindscientist%2F%7E3%2FJrpHSYaY_74%2F In my opinion the future of the scientific blog community is the same as always. (Source: Blind.Scientist) Blind.Scientist blogs http://www.medworm.com/rss/comments.php?id=3784435 Fri, 23 Jul 2010 14:39:16 +0100 3784435 http://www.medworm.com/index.php?rid=3629763&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fnew-beginnings-in-your-heart-and-head%2F There is a great tendency to be discouraged when you have pain everyday. It’s like a slippery slide in our Oregon rain. If you just sit there on that slick slope, you’re going to slide down and probably land in the gooey mud. Sliding through this life is easy. You don’t really have to do anything in particular. Just embrace your depression, know life today and again tomorrow, will be terrible and there you have it; the slow descent into a life of hellish pain and suffering. It’s an interesting fact about suffering that it is not all in the physical realm. Suffering is highly contagious and can infect our hearts, out minds and our attitudes…big time. It spews and oozes over into our social lives, our family lives and our financial existence. All of us know what it is to wallow, we... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3629763 Thu, 03 Jun 2010 22:06:31 +0100 3629763 http://www.medworm.com/index.php?rid=3607677&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fhow-important-is-stuff-in-a-life-of-chronic-pain%2F Do you ever wonder what you’ll leave behind? With Memorial Day approaching and the recent loss of my sweet mother-in-law, I’ve had a lot of time this week to think about the debris we leave behind. We all know we leave a trail of possessions and financial resources when we die but we lay that trail while we are alive, don’t we?   We humans leave bits of our skin as we shed it every day, according to the vacuum cleaner salesmen. Most of us find our hair falling out; some more than others. We have tons of garbage rotting in dumps all over the country, some even out on barges in the ocean. We see discarded disposable diapers lying in parking lots and wonder at the term, disposable. It’s strange to realize many of these bits of debris and garbage will be around long after we are not.... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3607677 Thu, 27 May 2010 19:28:49 +0100 3607677 http://www.medworm.com/index.php?rid=3588963&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Falternatives-scenes-in-a-life-of-chronic-pain%2F Quite often when you rent a movie, on the main menu they give you an opportunity to view deleted scenes, humorous flubs and alternative endings. I find it interesting and have often thought how wonderful it would be to be able to delete many of my past and present “scenes” in a life with chronic pain. I could fill a DVD with humorous misadventures and examples of screwing up and most certainly, it would be a good thing to write alternative adventures, whether they are beginnings or endings. So much of our daily life with chronic pain is far too boring to be an interesting movie. I can see it now in my mind’s eye. The main character is limping to the bathroom. She or he is struggling to get into a hot shower, camera pans to foggy windows. He grumbles into his clothes as life p... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3588963 Fri, 21 May 2010 21:03:33 +0100 3588963 http://www.medworm.com/index.php?rid=3564106&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Ffinding-your-limits-in-a-life-with-chronic-pain%2F There are few subjects we haven’t covered in the four years of this blog’s existence but there are certain themes which keep recurring as we wind our way through life with this “load” of chronic pain on our backs. We aren’t inanimate objects, groceries on a shelf going stale, produce in a bin rotting away with each hour; no, we’re human beings with lives, families and homes. We have chores, jobs, and other responsibilities to fulfill each day. Many of us have stopped working for remuneration but we still have work to do. We live, surrounded by a world that sheds, grows, blows dust, sheds skin, gets hungry, and often needs fixing. The constant issue which keeps arising in our lives is how much to do, how far to go and what is safe for us. How do you find your limits? How do you ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3564106 Fri, 14 May 2010 01:50:00 +0100 3564106 http://www.medworm.com/index.php?rid=3519581&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2F3-rules-for-living-with-chronic-pain%2F If you’re one of us who live with chronic pain that means you have a constant roommate. That roommate is chronic pain. Quite frankly, it’s a lousy companion and an inconsiderate guest. That invader never pays rent, takes up far too much attention, and doesn’t pick up after it’s self, leaving us in our compromised state to do all the work.  You figure out immediately, life isn’t fair. Fairness is left behind as a childhood fantasy and we’re left with the stark reality of inequality. We rant, we rave and we cry but eventually, we learn that peace comes with acceptance and we adapt. Adaptation reveals that somewhere, deep within us, hope is alive. We can’t always see it but it’s there. Life has a way of charging forward without our approval as dust gathers, duties beckon and ... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3519581 Thu, 29 Apr 2010 19:56:54 +0100 3519581 http://www.medworm.com/index.php?rid=3499197&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-compassion%2F Do you ever feel like you maybe don’t give yourself enough credit for doing as much as you do…MS and all? I had a very busy work weekend (which ran into Tuesday).  I had every intention of waking up on Wednesday, banging out a blog for posting and getting on with a productive day. And now, it’s Thursday! I really have no idea where yesterday went. By the evening I was beating myself up pretty good over what didn’t get done; including (but FAR from limited to) that blog… But this morning, even though I don’t feel 100%, I think I’ll get a little more done.  Certainly, I’ll not get everything done I want.  In fact I hope to get everything done I need and will call that a successful day.  But, here I am writing this blog so things are at least a bit better than yesterday. P... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3499197 Thu, 22 Apr 2010 20:32:31 +0100 3499197 http://www.medworm.com/index.php?rid=3475946&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fthe-morning-in-my-life-with-chronic-pain%2F Before I open my eyes each morning, upon awakening, I feel pain.  Each day it is the same, that moment never changes because my body has not changed. The area of pain may move, and does, as I take inventory each morning. “Arms, legs…  still intact. Hips in pain as well as the backside. Neck, sore yet functional, etc.” When I am asleep I dream the dreams of the healthy which are shattered on awakening. Each day, I am disappointed. I must be a slow learner because I have not accepted the pitiful side of my fate by now; or perhaps I am just a believer in efforts, faith and possibilities. When I open my eyes, I usually have the front or the rear view of a furry grey Miniature Schnauzer who has cuddled closely to me with the morning chill, trying to horn in on my heating pad. Both ends... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3475946 Thu, 15 Apr 2010 19:46:19 +0100 3475946 http://www.medworm.com/index.php?rid=3133712&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fholiday-blog-contest-winner-my-new-years-resolutions%2F You didn’t really think that we were going to post guest blogs without hearing from “Rusty,” one of our long time community members, did you? Rusty is from Perth, the capital of  Western Australia and proffers some insight into her own New Year’s Resolutions as well as sage advice for those of us who are considering making a holiday-induced promise or two. Resolutions: Keem ‘em Real by Rusty I have made New Year’s resolutions for as long as I can remember.  They are for me to focus on and to fulfill.  Resolutions are promises. I make New Year resolutions for me, to be a better person, a healthier person, a kinder person.  Almost everyone I know makes New Year’s resolutions too, but they don’t necessarily keep them. The one part of my pre-MS Superwoman self I allow i... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3133712 Wed, 30 Dec 2009 19:34:24 +0100 3133712 http://www.medworm.com/index.php?rid=3100932&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Fmr-scrooge-be-gone-and-take-the-grinch-with-you%2F Really! Don’t you know it’s Christmas? Yet, here you are, bringing it on. Your “bah humbug” presence is trying to louse up the happiest time of the year.  I know your type.  You’re the grouch at every family gathering; the insensitive friend who has no comprehension of chronic pain and no respect for the courage it takes to live this way. You’re that individual who cannot see life beyond yourself. How tragic is that? You’re missing so much. But I don’t really want to convert you; that’s Tiny Tim’s job. I just want you to be gone. The problem with you is you take many forms. Isn’t life difficult enough without all the struggles you throw our way, compounding our predicament with further complications? Life hands us disease and you hand us discouragement. Life assault... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=3100932 Thu, 17 Dec 2009 20:37:58 +0100 3100932 http://www.medworm.com/index.php?rid=2981367&cid=t_168520_150_f&fid=38374&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FePharmaSummit%2F%7E3%2FPsQZoApQeqE%2Fastrazeneca-is-joining-conversation.html (Source: ePharma Summit) ePharma Summit blogs http://www.medworm.com/rss/comments.php?id=2981367 Tue, 10 Nov 2009 18:17:00 +0100 2981367 http://www.medworm.com/index.php?rid=2789096&cid=t_168520_125_f&fid=38161&url=http%3A%2F%2Fwww.dentalheroes.com%2Fdental-blogs-the-week-in-review-september7-11-2009%2F It’s time for the fifth installment of “Dental Blogs: The Week in Review.” If you missed last weeks post, you can view it here: Dental Blogs: The Week in Review (August 24-30, 2009). So, without further ado, here’s the weekly roundup of interesting blog posts from around the Dental Blog Community for the week of September 7-11, 2009. Top 5 Stories of the Week 1) Is the ADA more interested in Dental Specialists than General Dentists? The Wealthy Dentist Blog asked dentists this question in a recent survey. You may be surprised by the results… 2) Marketing your dental practice without taking a bite out of your budget Dr. Gary Solomon suggests ways to market your practice that require thought and creativity, not money. 3) The hole truth about tooth worms Richard ... Dental Heroes blogs http://www.medworm.com/rss/comments.php?id=2789096 Sat, 12 Sep 2009 04:54:59 +0100 2789096 http://www.medworm.com/index.php?rid=2786176&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-chronic-pain%2Farthritis-is-so-much-more-than-daily-pain%2F There are over a hundred different types of arthritis. You can have one type or a combination of them, such as mixed connective tissue disease. Today I’d like to share with you a few of my personal impressions of what it is to live with arthritis. Most days it’s like riding a wet horse, bareback in the rain. You try to hang on but you fear you could fall off at any time and fear the consequences. You often feel like you’re coming down with the flu but you know you couldn’t have the flu that often and struggle to live with that yucky feeling while fulfilling what life demands, one day at a time. Since you’re immune deficient due to one or more of your medications, you must avoid others who are coughing, sneezing, dripping or hacking. You know if you become chilled it will take hou... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=2786176 Thu, 10 Sep 2009 22:12:21 +0100 2786176 http://www.medworm.com/index.php?rid=2614045&cid=t_168520_136_f&fid=36032&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Flife-with-breast-cancer%2Fbreast-cancer-isnt-always-just-about-you%2F When I was diagnosed with breast cancer in 2003, I was newly married and had just relocated to a new country. My mother was battling lung cancer and my eldest son was going through intense issues of his own. My having breast cancer just made everyone mad. My mother was mad because I couldn’t be there for her, my youngest son was mad because I couldn’t spend time with him like he needed to get used to his new home. My eldest son was mad because that was his thing at the time and my husband was just mad. It seemed that breast cancer wasn’t about me, it was about how it affected their lives. Today it is evident that my family is still rebuilding after the cancer bomb. My youngest son is still a little resentful of time missed with mom and my husband needs extra attention. My... Life with Breast Cancer blogs http://www.medworm.com/rss/comments.php?id=2614045 Fri, 17 Jul 2009 21:25:04 +0100 2614045 http://www.medworm.com/index.php?rid=2611042&cid=t_168520_117_f&fid=36026&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Fzimney-health-and-medical-news-you-can-use%2Fwho-pays-for-health-care%2F All the recent talk about health care reform has me thinking about an article I read last year about who pays for health care. So let’s begin with a question; namely, who do you think pays for health care? Is it employers? The government? Insurance companies? Individuals? If you’re like most Americans, you probably believe that employers pay the bulk of their workers’ insurance premiums and that governments pay for Medicare and Medicaid (and some will remember to add in the State Children’s Health Insurance Program – SCHIP). Some of you will no doubt believe that insurance companies pay for a lot of our health care since that’s where so many of the bills seem to go. In actuality, according to the article I read in the Journal of the American Medical Association, the answer ... Dr. Z's Medical Report blogs http://www.medworm.com/rss/comments.php?id=2611042 Thu, 16 Jul 2009 17:05:21 +0100 2611042 http://www.medworm.com/index.php?rid=2295062&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwalking-towards-a-world-free-of-ms%2F Spring is here which means it’s time for hundreds of walks, tens of thousands of walkers, all with one goal in mind: A world free of multiple sclerosis. Many of you know that I’m a big supporter of the National MS Society and act as an ambassador for that organization.  The MS Society and it’s more than 50 local chapters offer a myriad of support avenues to people diagnosed with MS and our families. Through research grants, the National MS Society (NMSS) has helped advance the world’s body of knowledge about multiple sclerosis.  In fact, there are more scholarly papers published annually then there were published in the whole of history before the founding of the NMSS. For those who find things like LDN underfunded, the National MS Society funded (and continues to fund) the f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2295062 Mon, 23 Mar 2009 19:39:15 +0100 2295062 http://www.medworm.com/index.php?rid=2301629&cid=t_168520_150_f&fid=38374&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FePharmaSummit%2F%7E3%2FiXcyD-mTwUM%2Fus-adults-with-diabetes-take-control-of.html WorldPharmaNews.com, reports that an increasing number of adults with diabetes are using digital resources to educate themselves and manage their care. According to the article, more so than other therapeutic categories, diabetes patients have an extremely active blog community. Celebrity diabetes patients have also gotten involved in the online mix - singer Nick Jonas teamed up with Bayer Healthcare to launch NickSimpleWins.com, a diabetes awareness site featuring a blog, online videos, and links to songs from The Jonas Brothers. What theories do you have about this community and their willingness to explore the online space? (Source: ePharma Summit) ePharma Summit blogs http://www.medworm.com/rss/comments.php?id=2301629 Tue, 03 Mar 2009 18:15:00 +0100 2301629 http://www.medworm.com/index.php?rid=2129419&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fwhat-things-do-you-miss-most-that-ms-has-taken-from-you%2F We can all agree that multiple sclerosis is a thief.  It takes things away from us upon which we rely and from which we derive much.  Of all the things that MS has taken from me; a career, a marriage (MS was only part of that), a lifestyle, a persona, you know what I miss most? A hot tub. Far greater a number are affected by heat than cold (though I know we’ve had those conversations as well) so I suspect I’m not alone here. On cold winter evenings or when a muscle is just out of place, a romantic getaway or just when it would be nice to relax at the gym, I miss a hot tub. The weekend after I was diagnosed in 2001, my former wife made reservation at a local spa hotel for us to recoup.  I had great treatments like hot stone massage, a hot seaweed bath, I spent lots of time in... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2129419 Fri, 23 Jan 2009 22:25:43 +0100 2129419 http://www.medworm.com/index.php?rid=2122060&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-requires-routine%2F We’ve been nothing here at Life with MS if not totally and unabashedly up front, open and even personal.  In that vein, I’m going to get even more personal with you than I ever have been before; today I’ll talk about hygiene. I’ve come to realize that in certain things in my day, things that most people just don’t even think about doing, that my auto-pilot is broken.  You know the type of things I’m talking about; how many of us think about how we are brushing our teeth, for example? I’ve found over the past years that if I don’t do everything in an exact order in the morning, I just forget to do it. We’re used to our minds being on the day ahead when showering, for instance.  Now, however, if I let my mind wander to my day ahead, I ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2122060 Wed, 21 Jan 2009 22:24:28 +0100 2122060 http://www.medworm.com/index.php?rid=2112485&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-and-clinical-trials-a-call-for-questions%2F I am preparing for a multiple sclerosis webcast that will happen in early February.  The topic for this conversation will be phase III clinical trials and I’ll have guests from around the country join us to talk about many aspects of this subject. As always, I want to make sure that “real” questions and concerns are addressed during the webcast and I’d like to know your questions about clinical trials. What would you like to know?  Let me put that another way: If you were sitting in a room with two well renowned MS researchers and a person living with MS who has been in a phase III clinical trial, what would you ask them? Some of my questions are: How do you get into a trial?  What are the risks?  Do I have to stop using my current drugs? What would you ask? Thi... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2112485 Fri, 16 Jan 2009 18:17:44 +0100 2112485 http://www.medworm.com/index.php?rid=2107983&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-recipe-for-success-i-need-your-help%2F For nearly two years now, in response to your requests, I have taken one post every month to share a healthful cooking tip and, perhaps, a recipe.  We’ve talked about foods that are good for us.  We’ve shared recipes new and old.  We’ve even dredged up an ancient food for you to try.  All of this in an effort to keep us well as we try to get on with this life with multiple sclerosis. I’m the Chef, so many of you looked to me to lead the discussion and offer ideas.  I have no problem with that.  I now need your help. As you’ll recall from my New Year’s resolution post, I’ve got to lose some weight.  I haven’t been able to exercise properly for almost two years with that old dying hip so I’ve got a little extra around the middle (a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2107983 Wed, 14 Jan 2009 22:24:25 +0100 2107983 http://www.medworm.com/index.php?rid=2095171&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-treatment-and-hair-loss%2F Has multiple sclerosis got you pulling out your hair…in clumps? Over the past month or so, I’ve noted several comments, mostly from folks on Tysabri, about hair loss. As a person not yet on this drug therapy (but considering it, intently) I want to know more; and I’m sure our other readers do as well. Novantrone, a chemotherapy drug used on some forms of cancer as well as MS, has a listed side effect of minor hair loss. When on a regular dosing schedule (every 3 months) I found a few more of my ever-graying tresses in the shower drain but not so much to be alarmed. Besides, as I said, some shedding was expected. These anecdotal reports of unexpected follicular abandonment while on an MS drug are of concern to me. Not for the reasons of vanity. While I feel lucky to have a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2095171 Fri, 09 Jan 2009 23:23:07 +0100 2095171 http://www.medworm.com/index.php?rid=2090244&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhappy-new-year-hows-your-ms-today%2F A Happy 2009, everyone! I know an awful lot of folks who were happy to see 2008 fade away and look forward (with justified trepidation) to a fresh start. Each month, we take the first Wednesday’s post to catch up with one another about our life with multiple sclerosis. We’ve used the space to tell of symptoms, relapses, triumphs and setbacks. We share coping skills, and we lament our losses. It’s also a chance, I find, to regularly check in with myself. As we all know, MS can slip ever so slowly into our daily routine. If I didn’t take time each month for this posting, I know I would have missed some things until much further into the symptom. What I’d like for all of us to do this first Wednesday of ‘09 is to think back, not only over the past months bu... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2090244 Wed, 07 Jan 2009 21:42:30 +0100 2090244 http://www.medworm.com/index.php?rid=2075157&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fan-old-tradition-reminds-us-that-it-could-be-worse%2F In countries of Gaelic history, especially in Ireland and even more especially in the south of County Kerry, a pre-Christian tradition took place last week, which is not only charming but charitable to an exceptional degree. It’s called The Wren’s Day. I was fortunate to be invited (or more correctly, allowed) to join in the revelry of the day in tiny Dingle Town a couple of years back while living in the county. A sweet lass from the town who was writing her doctoral dissertation on the tradition befriended me in a pub one eve and bid me to join her “wren”. The wren, a notoriously treacherous bird of lore, was once hunted and nailed to a pike which would lead a procession (the wren was not only to have betrayed St. Stephen but also old Irish soldiers in their fight... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2075157 Tue, 30 Dec 2008 19:48:30 +0100 2075157 http://www.medworm.com/index.php?rid=2061701&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fsnowstorms-and-our-multiple-sclerosis-teach-us-a-valuable-lesson%2F I was a Boy Scout (be prepared). I spent several years in the U.S. Coast Guard (Semper Paratus: Always Ready). I now live with a disease that can, and oft does, change from day to day (multiple sclerosis). Might as well use what you have… We’ve had the most snow (that has stuck around for over five days now, and there is over a foot of white in my gardens) than I can ever remember here in Seattle. No big deal; I was ready for it…or at least able to adapt a little better than some of my neighbors. Every morning, we’ve been up early, sweeping, shoveling, clearing and salting our walkways and paths for the dogs. We’ve plenty of fresh food on hand, and the cars were winter tuned and fueled before the storm ever hit. I will admit, however, to delay in the mounting ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2061701 Tue, 23 Dec 2008 00:04:47 +0100 2061701 http://www.medworm.com/index.php?rid=2053366&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fsolitude-a-side-effect-of-ms%2F There are physical and chemical reasons a person with multiple sclerosis should be ever vigilant for symptoms of depression. Our disease itself can cause imbalance in the central nervous system (CNS) which is known to bring on symptoms of clinical depression. Additionally, for those taking many of the disease-modifying therapies, drug-induced depression is listed as potential side effect on several MS medications. We, and those in our most intimate circles, must observe and be aware of this ever-present reality. There’s something else about MS which can and does open the door to depression: solitude. By definition, solitude is a state of being solitary (alone). I propose that it isn’t just aloneness, which can be a smoldering punk. Limited or reduced social activity can also le... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2053366 Fri, 19 Dec 2008 18:52:16 +0100 2053366 http://www.medworm.com/index.php?rid=2047804&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fwhat-would-you-do-for-a-cure-for-ms%2F Allow me to first apologize for my spotty postings as of late. Caryn and I have been fighting a particularly virulent strain of rhinovirus this past couple of weeks, and it had us pretty far down. I’ve reached bottom and think I’m better today than yesterday; it’s a start. During all this coughing, hacking and sneezing, I’ve still been doing my physical therapy rehab: leg lifts, squatting exercises, all the fun stuff. It got me to thinking about how much effort I’m putting in after the fact of hip replacement. The docs have done everything they can; now it’s my turn. Anything I get back from here on out is all up to me. What about my multiple sclerosis? I know that many of us (and I’m one, don’t think I’m pointing fingers) don’t ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2047804 Wed, 17 Dec 2008 20:32:20 +0100 2047804 http://www.medworm.com/index.php?rid=2018242&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdrop-everything-i-have-multiple-sclerosis%2F As we all wind down from the Thanksgiving holiday (it’s my all-time favorite and I “do it up” so it takes a while to wind down), I’ve been noticing an unsettling bit of new multiple sclerosis in my life. I’m dropping everything! In one day early this week, I dropped a sauté pan half-full of hot food, three glasses (breaking only one) several writing implements and a score of small, thin objects. After a day like that, I took notice. In the years prior to diagnosis, while like many of you suffering symptoms that I simply ignored, I must have broken a small fortune in stemware. I just thought I was clumsy…okay maybe I was that too. I now know, however, that this is the ol’ MS at work. I’m paying much closer attention to every little thing I ho... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2018242 Fri, 05 Dec 2008 22:35:26 +0100 2018242 http://www.medworm.com/index.php?rid=2011652&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdecember-edition-hows-your-ms-today%2F “The sun is shining, the grass is green, the palm trees and evergreens sway. There’s never been such a day…” Bah, whatever! Cold is setting in (at least in the northern hemisphere) sunlight is long and low (when it decides to make an appearance at all!) and the days are so short that if I have a late lunch, I’ll likely have to turn on a lamp.  Adding to all of this is that I seemed to have moved into a neighborhood that goes all out in home holiday decoration; and me with multiple sclerosis and a bum hip, I won’t even be able to get lights into the bushes! Ah, well. It’s December, and I have multiple sclerosis. Each month, we take time in the first week to check in with one another. Now, we end another year and look to 2009, together. I fear my MS... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2011652 Wed, 03 Dec 2008 23:15:23 +0100 2011652 http://www.medworm.com/index.php?rid=2006558&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fphysical-therapy-for-multiple-sclerosis%2F Family is gone, dogs are settled, holiday lights are making there way up around the neighborhood…I can’t believe it is already December. My December includes outpatient physical therapy (PT) for my hip replacement. I’ve been having someone come into the house for a few weeks, but now it’s time to go to them. This will be my first go at physical therapy. Well, I had an evaluation at the University of Washington a few years ago, but that was mostly to get a prescription for foot support when my drop-foot was bad. I know many people with MS who have either regularly scheduled or ad-hoc physical therapy as part of their MS regime. I’ve been pretty good at keeping up with my post-op exercises (pretty good) and am actually bored with them. I’m looking forward ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2006558 Tue, 02 Dec 2008 16:33:59 +0100 2006558 http://www.medworm.com/index.php?rid=1991745&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhow-did-multiple-sclerosis-shape-who-you-are%2F This week my sister’s family is in for a holiday visit and last night we were having a chat with my 15 year old niece about the tribulations of high school. The conversation turned to the absolute sureness about neigh everything in a person’s life at that age; how we are/were sure we have/had all the answers if somebody would just listen. Trying to explain (and I am not a parent, so I get this stuff wrong ALL the time) that so many more experiences will shape her choices and opinions in the future we discussed the fact that in two years time, she won’t dress the way she does now, likely not listen to much of the same music and will begin to find other interests and distastes. It was a fun exercise in what my sister, brother-in-law and all good parents foster each night ‘round eveni... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1991745 Mon, 24 Nov 2008 20:56:47 +0100 1991745 http://www.medworm.com/index.php?rid=1947738&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhow-do-you-make-sure-your-multiple-sclerosis-is-winterized%2F The rainy season has begun in Seattle. It’s dark when we wake, it’s wet, rainy and gray all day, and dark well before cocktail hour. You try to get as much done outside before the rains set in. Most of the leaves, however, don’t fall from the trees before the rains begin. This makes yard clean-up that much more of an effort. I’d think about leaving them until spring, but picking up after 3 dogs becomes too much of a land mine hunt if the leaves aren’t raked up regularly. I was a bit hamstrung this year as well; having surgery at the end of September. I got everything done I could before the cutting, but it wasn’t enough…it never is. Winter is setting in and I’m not ready for it; and sometimes I feel that way about multiple sclerosis. Every ti... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1947738 Mon, 10 Nov 2008 18:26:33 +0100 1947738 http://www.medworm.com/index.php?rid=1943575&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Ffinally-a-smaller-needle-for-ms-injections%2F Part of my post-operative treatment was a course of injectable blood thinners for two weeks after my release. When I was in the hospital bed, the nurses came in with a pre-filled syringe and wanted to teach me how to give myself a shot (yes I laughed!). Nobody likes self-injecting it’s just something we’ve all come to terms with. So I prepped myself and took the cap off the needle and laughed again! This needle was so small! It was so thin and so short…why couldn’t MS needles be this small? Apparently, now a MS needle IS this small! The makers of Betaseron (interferon beta-1b) announced last month that they have changed the delivery equipment of their drug (not the formulation) to the thinnest needle in MS injections. This new syringe has a 30-gauge mosquito bite of... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1943575 Sat, 08 Nov 2008 00:14:23 +0100 1943575 http://www.medworm.com/index.php?rid=1939861&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fpost-election-day-hows-your-ms-today%2F Twenty-odd months of campaigns and we are now ready to move on as one country and get on with fixing the issues which need some serious overhaul. Let’s move on too, shall we? Every month we open up a forum for all of you to check in and keep track of one another regarding our multiple sclerosis. We catch up, we vent, we question, we answer; we reconnect! Every time I go back to the comments on this monthly blog I learn something, and that’s not an exaggeration! As far as my MS, I’ve been living in a simulated “big one.” Recovering from hip surgery has been so very much like my first big attack that I’m using that experience as a training of sorts. In the house, I have to use a walker. And when I go out, I’ve been using forearm crutches. I sleep at ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1939861 Wed, 05 Nov 2008 19:38:49 +0100 1939861 http://www.medworm.com/index.php?rid=1918291&cid=t_168520_129_f&fid=36035&url=http%3A%2F%2Fblog.healthtalk.com%2Fchronic-pain%2Flife-with-chronic-pain%2Fhow-to-wage-a-good-fight-against-chronic-pain%2F I certainly wish it would slow down a bit, but life keeps on cranking. The spiders keep up their swinging routine to make cobwebs. Dust and dirt keep drifting in, along with dog tracks, dog hair, human clutter and laundry. Why doesn’t life realize I am not always up to all this work? Let us not leave out my least favorite chore of all and that’s the trip to the supermarket. Yuk. I love to cook, but hauling in the groceries is tiring, painful and irritating. Sometimes, I confess, as my sweaty, irritated self passes one of our dogs, wagging their little tails and jumping to greet me, I talk to them. “Hey, you guys. Some of this stuff is for you. Don’t just sit there looking cute, grab a bag!” The greatest response I’ve received thus far from my canine frie... Life with Chronic Pain blogs http://www.medworm.com/rss/comments.php?id=1918291 Wed, 29 Oct 2008 15:04:42 +0100 1918291 http://www.medworm.com/index.php?rid=1907927&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Flets-discuss-ldn-for-ms-again%2F We’ve had a few discussions about LDN in the past. In fact, for one posting, I did a month’s worth of research to only come up with the title, “I Still Don’t Know Enough.” Pretty lame, I know! Since that post in 2006, a study has been commissioned by the National MS Society and is now in full swing. This is a double blinded/peer-reviewed study which will take some time. So, we’re not going to know the results for another year or so. The way LDN is thought to work (if “work” is the right word here) is to block certain receptors in the brain. It is most often used as an anti-opiate drug for people recovering from addiction. Whether it actually changes the course of MS or rather masks symptoms is the basis of the study. One might think; “H... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1907927 Fri, 24 Oct 2008 17:24:45 +0100 1907927 http://www.medworm.com/index.php?rid=1892191&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-and-the-gift-of-receiving%2F I’ve spent the morning writing thank you notes today. The stack of people who have either stopped by, brought a meal, sent flowers or just make check-up phone calls over the past three weeks is really humbling. It lead me to today’s topic.There have been many times in the past couple of years when we’ve had comments about “allowing” someone to help (too many to find and link in this post). We all know that it feels good to do something for someone; we just hate being the someone who needs assistance. Cayrn (my fiancee) and I made an agreement when I decided to schedule this surgery. Knowing that she couldn’t be around 24/7 for the week or so that was recommended for care after discharge from hospital, I agreed to spend a week or so in a convalescent home... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1892191 Mon, 20 Oct 2008 22:31:35 +0100 1892191 http://www.medworm.com/index.php?rid=1886833&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdawn-bailiff-on-notes-from-a-minor-key%2F As promised, I’ll share notes from the author of our most recent Book Club Blog; Dawn Bailiff. Her work, “Notes From A Minor Key” has been the subject of our monthly review for the past couple of months. Dawn has much to write to us, so I’ll end my comments here. We thank Ms. Bailiff for her time in sharing a few thoughts with us and for telling her story, which is in parts, the story of many of us. Ladies and Gentlemen, Dawn Bailiff: I would like to thank those of you in the HealthTalk MS community who have taken the time to read, discuss, contemplate and even criticize my book. You are a group with a “good energy” who collectively refuses to be defeated or defined by the MonSter. I send special gratitude to Trevis for providing such a wonderful MS reso... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1886833 Fri, 17 Oct 2008 16:53:25 +0100 1886833 http://www.medworm.com/index.php?rid=1880296&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Foh-so-thats-what-a-foley-catheter-is%2F In prior discussions here, we’ve talked about what many dread most as a potential MS treatment – catheterization. Like many of the medieval medical tools science has developed to help us cope with our symptoms. However, we tend to wait until far past the point they are needed to use them. At that point we wonder why we waited so bleeding long! For example, we put off a cane until we hardly can get out of the house anymore, then find that by using one we can actually walk around the block again. We scoff at the idea of a scooter, then realize how many kid’s soccer games we’ve missed or how many fun adventures we’ve said “no” to only after we’ve acquiesced. Using a catheter is another one of “those” topics How many UTIs does it take, how many fevers spiking and setting of... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1880296 Wed, 15 Oct 2008 22:30:24 +0100 1880296 http://www.medworm.com/index.php?rid=1873231&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdont-put-me-in-a-homeunless-my-ms-really-calls-for-one%2F Not the most pleasant of subjects to broach, for certain; the idea of a convalescent home as permanent or even temporary refuge from multiple sclerosis (MS). The topic, however is one which we should give a good hard think and maybe even blurt a few words out to those most important to us. For many of us, the day when Long Term Care Insurance (LTCI) was available is long in our past. First things first, check to see if you have LTCI and check to see how “good” it is. If you don’t have LTCI, find out if you can still purchase a policy. Policies vary just like health insurance policies, life insurance and auto plans so make sure you do some shopping around. The obvious impetus for my coming face-to-face with this topic was my recent surgery. I now feel we were quite unprepa... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1873231 Mon, 13 Oct 2008 19:24:05 +0100 1873231 http://www.medworm.com/index.php?rid=1851316&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fcarol-king-and-ms%2F No, Carol King (to my knowledge) DOES NOT have multiple sclerosis. This week, however, as I prepare to leave my hospital room (can I take that plasma flat-screen with me?) and make my way home the words of her song, “You’ve Got a Friend,” keep repeating in my ears. I was a kid when “Tapestry” came out in 1971 and I couldn’t tell you the first time I heard the song, but through the years the words; “Winter, spring, summer or fall…all you’ve got to do is call..” have found themselves ingrained into my person. I’ve always held this lyric a lofty and noble goal as someone’s friend. I fell short of it, but feel a better person for trying. I’m also finding that it was an investment I didn’t even know I was making... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1851316 Fri, 03 Oct 2008 21:59:01 +0100 1851316 http://www.medworm.com/index.php?rid=1845208&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhows-your-ms-today-october-edition%2F Since January of 2007, we’ve been asking you to tell us about your life with MS in our monthly “How’s Your MS Today” posting. We’ve taken the first Wednesday of each month (with a few exceptions for my mental slips) to open a forum for all of us to check in, check up and even let us know that you’re checking out for a bit. It’s always one of our most popular posts and never seems to fail in bringing one of the “lurkers” out of their shell and onto the comments page. I like that a lot! I’ve sent this page in to Natalie a couple of days early as today is a post-operative day for me. While a morphine induced ramble might make for keen entertainment, I’m pretty sure the proper sequencing of keys to hit to write, address and send... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1845208 Wed, 01 Oct 2008 19:44:28 +0100 1845208 http://www.medworm.com/index.php?rid=1815958&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmichelle-obamas-connection-to-multiple-sclerosis%2F Where has the time gone, my friends? It is now mid-September, and I’ve been trying to get to this topic since the middle of August! Caryn (my fiancée) had her week or so with the remote controller during the Summer Olympics. She’s a former swimmer, so you can only imagine the fervor and intensity with which we watched the games. She had her time, now it’s mine. My “Olympiad” comes every four years as well. It’s proceeded by years of training, months of qualifications and is covered all over the world, just like the “other” games…I love politics! My version of the highly televised sport is the over the top production of the party conventions. I could go on and on about both parties “party,” but that’s not what this post is about. Did you catch Michelle Obama... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1815958 Tue, 23 Sep 2008 00:09:14 +0100 1815958 http://www.medworm.com/index.php?rid=1783014&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fseptember-check-in-how-is-your-ms-today%2F Where has the summer gone? It seems like just a couple of weeks ago, I wrote a Happy New Year post to all of you. Now, I’m writing to check in with you about your MS for September! I hate to admit it, but the parents were right because time does seem to go faster as you get older. So much seems to be happening and so little time to write it all down. I’ve jammed my September schedule full as I’ll be taking a mandatory 6+ weeks “holiday” post hip replacement on the 30th of this month. I’ve started a “prehab” regime of diet and pre-op exercises to drop some of this weight and strengthen muscles around what will be my new bionic addition. My MS seems to be like a constant white noise in my life. Hmmm, that’s a good way to put it… I guess I’ve just gotten used to so much ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1783014 Thu, 11 Sep 2008 00:06:34 +0100 1783014 http://www.medworm.com/index.php?rid=1623070&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhey-president-bush-lets-talk-disability%2F Forgive a short post today. I am off to a three day quarterly meeting of the National Council on Disability. This is a council appointed by the President and confirmed by the Senate to deal with disability issues in America. There will be several public comment sessions during this meeting. The council last year decided to hold their quarterly meetings around the nation so as to be more in touch with our needs. This one is in Seattle and their meeting in the fall is scheduled for Kansas City. I’m pressed for time today, but wanted to put something out to our community. I’ll have an opportunity to address the Council as well as interact on a one-on-one basis with several members. Is there anything you would like me to bring up? Are there concerns you think these advisors should pass alo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1623070 Mon, 14 Jul 2008 23:38:48 +0100 1623070 http://www.medworm.com/index.php?rid=1616542&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-and-a-clean-house%2F If there is one thing I hear more than any other, when people are being real about the day-to-day challenges of living with MS, it’s keeping the house clean. It seems to be one of the hardest things to “let go.” It may be one of the hardest to let go, but once we do (and correct me if I’m wrong here) it’s one of the biggest burdens lifted. I used to have a housekeeper come to my houses three or four times per month. That’s no longer an economic reality anymore (and I don’t think I’m alone on that one). If we do work, a lot of times it’s to keep the insurance coming in. Even when I was at the top of my game, when things got a little tight around the purse strings, the housekeeper visits were the first to be cut back or stopped. It’s kind of funny because we a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1616542 Fri, 11 Jul 2008 20:55:22 +0100 1616542 http://www.medworm.com/index.php?rid=1594048&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdating-with-multiple-sclerosis%2F A popular topic here at Life with MS is dating (or finding a relationship) with multiple sclerosis. I know it’s difficult, I’ve been there myself and it is without a doubt difficult. In the past couple of weeks, I’ve been doing some undercover research into Internet dating for the disabled. Don’t worry my fiancée (Caryn) knew what I was doing before I checked out the scene on these sites. Those of us with MS want the same things out of a relationship that anyone wants out of a relationship. For example, we want happiness, companionship and we want love. Our profiles on the dating sites don’t list different desires than “typical” people. “Someone who is comfortable with himself, accepting of me for who I am and can make me laugh” has got to be the number one thing I read ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1594048 Tue, 08 Jul 2008 00:18:42 +0100 1594048 http://www.medworm.com/index.php?rid=1577518&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Four-july-check-in-how-is-your-ms-today%2F It’s time for our monthly posting where we all check in. This is the post where we discuss our multiple sclerosis symptoms, our coping solutions and just about any other thing that pops into your minds. I think that this community (at least the vocal couple of hundred of you) is pretty accepting of where you are with your disease. I’ve read some pretty personal information in these pages (many in this particular monthly posting). I must, as the “leader” of this group, tell you how very proud I am of all of us for that. Now on to how my MS is today? Honestly, other than a new sense of fatigue (I’m back to daily naps and waking in the mornings is an hour-long ordeal) my symptoms are stable. My legs are a bit thick and slow, but the recent heat likely has a lot to do with that. I’... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1577518 Fri, 04 Jul 2008 14:16:10 +0100 1577518 http://www.medworm.com/index.php?rid=1556550&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fnotes-from-a-minor-key-chapters-17-21%2F Summer finally arrived in my part of the world this weekend. It should be noted that summer only officially arrives in Trevis Gleason-world when it is hot enough for me to have an iced coffee and gin and tonic in the same day. It was due to a bit of summer frolic that my Friday posting didn’t make it to the office on time. As summer begins, June ends. This being the last post of June, we’re on to our book club blog. We’re discussing chapters 17-21 of Dawn Baliff’s book, “Notes from a Minor Key” this month. This section of the text begins with the culmination of many young women’s dreams: marriage to the man she loves, a wonderful (fully paid) honeymoon to a quaint village in the warmth of Spain and lying with her husband for the first time. At the very time when Dawn wants to... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1556550 Mon, 30 Jun 2008 21:59:15 +0100 1556550 http://www.medworm.com/index.php?rid=1544108&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fcould-a-virus-be-the-cause-of-my-ms%2F If the MS KIA (know-it-alls) are always in your face telling you how to “cure” your MS, there is one sure way to shut them up: Ask them how you “caught” multiple sclerosis in the first place! That one stumps even the most trained and experienced researchers. One of the many theories out there has to do with exposure to some form of environmental trigger. When I hear the words “environmental trigger,” the first thing that comes to mind is playing in a toxic dump when we were kids. While there is some evidence to that end, most researchers are talking about exposure to another toxin – microscopic pathogens. Viruses seem to be the main focus of current research, and tomorrow night two of the foremost experts on this topic will be guests on our MS webcast, Causes ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1544108 Wed, 25 Jun 2008 22:14:19 +0100 1544108 http://www.medworm.com/index.php?rid=1538394&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdoes-your-ms-make-you-more-adaptable%2F To say that my past month has been a little busy would be like telling a woman in her 42nd week of pregnancy that she’s a little pregnant! In the past two weeks, I’ve spent several days in both Florida and Alaska for work. To add to that busy schedule, Caryn’s (my fiancée) graduate school commencement festivities occurred, so hopefully you’ll forgive (or at least understand) the lull in my postings. However, I didn’t plan on missing any posts last week because I was staying at a “business class” hotel in the capital city of Alaska. I expected Internet access at a business center where I could jot my tri-weekly musings and post from the land of the midnight sun. This was not the case, and I just had to look around and accept that a couple of postings were going to be miss... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1538394 Mon, 23 Jun 2008 22:02:11 +0100 1538394 http://www.medworm.com/index.php?rid=1536715&cid=t_168520_133_f&fid=35096&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAutismVox%2F%7E3%2F317179602%2F Four students who recently graduated from Bellevue Community College are the first to receive an Associate of Occupational and Life Skills (AOLS). To receive an AOLS, students Bergen Delisi, Leah Brand, Anna Harnois and Trent Marshall completed a 90 credit-curriculum of college level courses that are designed to prepare them for the workplace with courses in basic subjects like social studies, science, math and writing, and also in topics such as global perspective, citizenship and volunteering. Students in the program have Autism, Asperger’s Syndrome, Obsessive-Compulsive Disorder, Attention Deficit Disorder, and other learning disabilities. Today’s Bellevue Reporter (WA) describes the four-year-program more: To cater to the variety of learning styles and abilities that make up th... Autism Vox blogs http://www.medworm.com/rss/comments.php?id=1536715 Sun, 22 Jun 2008 01:42:33 +0100 1536715 http://www.medworm.com/index.php?rid=1522533&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-importance-of-presence-in-our-lives%2F My mother had a “significant” birthday a couple weekends ago, and my brother (living in Michigan) and I decided to surprise her with a visit. (My sister was there too, but she only lives about 10 miles from my parents in Florida.) The surprise came off wonderfully, and we made my mom cry – in a good way for once! The experience has left me realizing something very important, and I expect it might be a good lesson for all of us living with multiple sclerosis. It was obviously not a small thing for the two of us to fly from across the country to see our mom, nor was it minutia for my sister to arrange the whole thing. It was, however, one of those little things in life that make all the difference – just being there. It’s not like we’re not a close family… not by a long sho... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1522533 Mon, 16 Jun 2008 23:49:23 +0100 1522533 http://www.medworm.com/index.php?rid=1500420&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-impact-a-good-window-has-on-your-ms%2F Our recent move allowed for many positive changes in our life. First, of course was the increase of space. My old place was great for Sadie and I, but once Caryn (my fiancée) moved in with her dog Stella, well…three rooms and a bath just didn’t make the cut. Second, an old friend from North Carolina has a great saying; “Three moves is as good as a fire.” Moving gives one a chance to sort, separate and sling. We were able to pare down some of our stuff and that’s always a good feeling. Finally, and the point of this post, is the ability to rearrange the furniture. My desk (I mean “our” desk, see Caryn, I’m learning) is facing a window into the back garden. It’s a nice yard with a very tall hedge row of cedars in the back, wonderful flowering bushes and a prodigiously prod... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1500420 Fri, 06 Jun 2008 17:59:56 +0100 1500420 http://www.medworm.com/index.php?rid=1494646&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fits-june-hows-your-ms-today%2F I call this monthly post “How’s Your MS Today?” but it’s really a way to open the floor to any of your questions, concerns and opinions to HealthTalk and to each other. We’ve had some pretty good conversations in these postings – and we’ve had mundane conversations too. I wrote in my very first posting, in 2006, that these pages are all about you. This is just one of the ways that I try to keep focus on that fact. As for me; I’m happy to say that my multiple sclerosis is in a holding pattern. With the packing and moving and a bit of a hectic schedule the past few weeks, I was prepared for worse (and by prepared, I mean I had backup plans for just about everything this past month). However, this month admittedly seems equally as overwhelming as the last (which, if you recall... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1494646 Wed, 04 Jun 2008 23:30:40 +0100 1494646 http://www.medworm.com/index.php?rid=1480952&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fnotes-from-a-minor-key-chapters-6-16%2F The last posting of each month, we take time to talk about our book of choice. We are currently discussing “Notes from a Minor Key” by Dawn Bailiff, a former child piano prodigy and woman living with some serious health issues. When we last left Dawn, she was on the road to a tenuous relationship with a man significantly her senior who was already in a romantic relationship. She was struggling with her musical place in the world and with an unknown health issue. We now find out, 8 months into the future, that her pain was caused by endometriosis. I must admit that I’ve been told by more than a few women that they’ve had bouts with this disease. Maybe it’s a guy thing, but I had NO IDEA that it could be this bad! As the author makes her way through the unbelievable complexities of... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1480952 Fri, 30 May 2008 23:58:30 +0100 1480952 http://www.medworm.com/index.php?rid=1478283&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmoney-matters-does-rising-gas-prices-hit-us-harder%2F I’m not usually one to bellyache about the price of gasoline. In fact, long ago, I advocated for taxes to raise gas to $3.00 per gallon so we could use the money for public transportation projects (thus making it less necessary to buy the gas anyway). My family was always talking about where they had found a penny or two cheaper price of gas and would drive out of their way for a fill up. I figured, “Two cents per gallon in a 12 gallon tank saves me $0.24. My time spent in traffic is more important than that.” Gasoline at $4.00/ gallon would send every driver in the country to queue up…and to add insult to injury, there is no end in sight to the upward trend. About a year ago we discussed how far we drive to get to our MS doctors and clinics. With gas prices what they are, I think ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1478283 Thu, 29 May 2008 23:49:44 +0100 1478283 http://www.medworm.com/index.php?rid=1475465&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmoney-matters-does-rising-gas-prices-hit-us-harder%2F I’m not usually one to bellyache about the price of gasoline. In fact, long ago, I advocated for taxes to raise gas to $3.00 per gallon so we could use the money for public transportation projects (thus making it less necessary to buy the gas anyway). My family was always talking about where they had found a penny or two cheaper price of gas and would drive out of their way for a fill up. I figured, “Two cents per gallon in a 12 gallon tank saves me $0.24. My time spent in traffic is more important than that.” Gasoline at $4.00/ gallon would send every driver in the country to queue up…and to add insult to injury there is no end in sight to the upward trend. About a year ago we discussed how far we drive to get to our MS doctors and clinics. With gas prices what they are, I think i... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1475465 Wed, 28 May 2008 22:06:20 +0100 1475465 http://www.medworm.com/index.php?rid=1461317&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fa-healttalk-webcast-on-the-ms-pill%2F I’m old enough to remember the sexual revolution (though some would say I’m the product of said social uprising). I remember when the conversation of someone being “on the pill” referred to sexual promiscuity of a modern couple deciding to put off having kids for a while. Nowadays whenever I’m in MS circles and the “The Pill” is mentioned we are not speaking of sexual freedom, parental choice or even Jefferson Airplane. We are, of course, speaking of oral MS disease modifying therapy. Tomorrow night, I’ll be speaking with some of the leading experts trying to bring oral treatment to the market on a webcast called, “No More Needles? An update on Pills to Treat MS.” We’ll chat for an hour with Dr. Patricia O’Looney, Ph.D., Vice President of biomedical research... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1461317 Wed, 21 May 2008 22:50:47 +0100 1461317 http://www.medworm.com/index.php?rid=1449664&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fwhat-would-the-aftermath-of-an-ms-cure-look-like%2F What if they cured multiple sclerosis today? You wouldn’t have to fear your next relapse, you wouldn’t have to see and feel your control over your own body slip away. You wouldn’t have to check in with yourself or with others about your disease: you’ve been cured. No more shots, infusions nor MRIs. No more biannual slogs to the neuro or the MS clinic. No more MS Walks, Bikes or Luncheons. No more asking people for money to help fight MS. No more looking at the next assistive device and wondering how long before that piece of furniture becomes your daily companion. No new lesions, no new disease activity, no more immune wars taking place inside your brain. You’ve been cured…now what? From reading through your comments it seems that many of you are living life to the fullest of ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1449664 Fri, 16 May 2008 18:26:48 +0100 1449664 http://www.medworm.com/index.php?rid=1443258&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Frecipe-add-a-little-yogurt-to-your-diet%2F In the second week of each month, we discuss a particular food or recipe that can help us stay or get healthier. We’ve had a nice bit of online discussion, so we’ll continue with this format. I vaguely recall last summer someone on the blog complaining about having to take some of their meds with food. Being that some of us take our medications throughout the day, this can make for some pretty unhealthy eating habits. During that discussion, I mentioned that a small, low fat/non fat yogurt could be an answer. Today, I’d like to talk further about this fun (and healthful) food. Yogurt is an old food. Most food anthropologists believe that it was transported by the Mongols to Turkey a very long time ago. Back then, milk was put into the stomachs of dead animals and carried around. Natu... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1443258 Wed, 14 May 2008 20:18:18 +0100 1443258 http://www.medworm.com/index.php?rid=1437168&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-communities-online%2F The move went well! I am, however, totally knackered. Therefore, I hope you’ll forgive the short post (a post that asks more then it tells). Tomorrow is Poker Night for me (my NMSS men’s self-help group) and we’re having as our guest speaker, Natalie, the blog-goddess here at HealthTalk. Her assigned topic is: Accessing online communities for people living with MS. As I continue to dig through boxes I thought I had labeled well enough, I’d like to know where else you are getting information about living your life as fully as possible. I know HealthTalk rocks but, let’s share some of the other sites you find almost as helpful. Wishing you and your family the best of health. Cheers, Trevis (Source: Life with MS) Life with MS blogs http://www.medworm.com/rss/comments.php?id=1437168 Mon, 12 May 2008 19:53:12 +0100 1437168 http://www.medworm.com/index.php?rid=1432921&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmoving-day%2F Today I beg your indulgence, because today is packing day. I mentioned on Wednesday that Caryn and I are moving. I’ve lived in this flat for longer than I have anywhere in my adult life – nearly five years. I guess I just have feet that need to get up and move now and again. I’ve lived in three different countries, 10 states and a plurality of places within most of the states (even cities). Caryn (my fiancée) moved into my flat last February. I must say that I have loved this apartment. It is half of the first floor of a 105+ year old house in Seattle’s Ballard neighborhood. The owners of the house live in the other side (plus upstairs). They have given me free reign over the gardens and décor. It has been a nice place to live. It is, however, simply three rooms; bedroom, living/... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1432921 Fri, 09 May 2008 21:22:58 +0100 1432921 http://www.medworm.com/index.php?rid=1426896&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fits-may-hows-your-ms-today-2%2F “It’s May. It’s May; the lusty month of May” -Guinevere Guinevere’s quote above from Lerner & Loewe’s musical “Camelot” will not be the only song quote in this posting…but I do like that one! The first week of every new month (since December of 2006!), has a blog post dedicated to general comment about our multiple sclerosis. We like to check in with one another and it helps us keep track of our own life with this disease. I’ll not take up too much space with my own story (I feel like this past week was “all about me” with my diagnosis trilogy), instead I’d like to make a quick comment on one thing that I’m not alone in suffering these past weeks/months and then open the floor. Caryn and I (along with our dogs, Sadie and Stella) are moving this weekend. I’... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1426896 Wed, 07 May 2008 19:54:07 +0100 1426896 http://www.medworm.com/index.php?rid=1423766&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fnotes-from-a-minor-key-chapters-1-5%2F We are a little off schedule with my recent trilogy about my MS diagnosis. Typically, I like to end the month with our book club blog discussion. So without further ado, let’s get this Cinco de Mayo party…er, blog started. Our new book is Dawn Baliff’s “Notes from a Minor Key.” If you recall, we already decided how we would divide this book up for easy digestion and discussion. Therefore, today we’ll discuss chapters 1-5. The first thing that strikes me about the book is Dawn’s style and tone. This is not a tiptoe around subjects with a withering flower kind of book. This is an east coast born and bred woman telling it how it was and is, and pondering how it will be. I’ve winced, I’ve blushed and I’ve squirmed while reading these pages, and I don’t think she ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1423766 Tue, 06 May 2008 20:01:12 +0100 1423766 http://www.medworm.com/index.php?rid=1417940&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmy-ms-diagnosis-the-conclusion%2F For the past couple of posts I’ve been recounting the week of my diagnosis of multiple sclerosis back in 2001. I appreciate your kind comments, and I hope that even those of you that were diagnosed a long time ago still find this recollection at very least entertaining, if not helpful. When I stopped on Wednesday, I was making my way out of my first MRI… At that time, I didn’t know a whole lot about the protocol of the medical world (that’s an education I would have gladly gone without). I peeked into the NASA-like control room of the MRI and saw what I assumed were green/white images of my head and neck on a large, flat computer screen. I know I searched to the fullness of my capacity in the mere glance or two I could steal while flirting with the MRI tech (yes, I was still Trevis... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1417940 Sat, 03 May 2008 02:39:56 +0100 1417940 http://www.medworm.com/index.php?rid=1410002&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmy-ms-dignosis-part-two%2F On Monday I began telling you the story of my diagnosis, which is seven years old this week. When we left our hero, he was just becoming aware of encroaching disability in his left side. For some days, I had been experiencing a real humdinger of a knot in my left trapezius (a back muscle). This thing felt like it was the size of a baseball and I chalked my left side issues up to this sinewy snarl. By morning, I was actually getting worried. The entirety of my left side was slow to respond and thick when it did. That side of my face even felt fat and doughy and, did I see it drooping?! Still, I accused that ball of stress in my back and made an appointment with my massage therapist. What a “guy” thing to do… Ilene, my therapist, was more than just your average rub-down artist. She has... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1410002 Wed, 30 Apr 2008 19:53:12 +0100 1410002 http://www.medworm.com/index.php?rid=1405481&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmy-ms-diagnosis-story-part-one%2F As I sit at my desk, prepared to tell this story, I’ve pressed myself a second cup of coffee. As I lean back and look at the blank screen, I wish there were something a little stronger in the cup. This past Friday was the anniversary of my MS diagnosis. We’ve coursed through an awful lot of topics about multiple sclerosis here in these blog posts of Life with MS, however, this is the first time I have talked in detail about that day (or that week, really). I wrote about my five-year anniversary in the first month or so of this blog but it was more of a reflection than a recollection. This morning, with unfortified coffee at the ready, I begin recall that week… Monday morning, the 23rd of April, 2001 began in the dark. I was in rural western New York for the weekend and had an early, ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1405481 Mon, 28 Apr 2008 21:23:52 +0100 1405481 http://www.medworm.com/index.php?rid=1395208&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-monster-in-the-closet-relapse%2F Okay, so you (or a family member or a friend) have MS and it will, in all medical likelihood, get worse. How does one live with that hanging over them 24/7? Funny you should ask. The biggest obstacle for many of us to mentally hurdle is the fear of what’s next? What’s next on the list to be taken away? I know of people who have a tough time sleeping because their onset symptoms came upon waking in the morning. They don’t want to wake up with something else, so they don’t sleep. That may be one extreme of the issue, but there are many colors to this spectrum. Tomorrow night, I’ll chat about this very topic with two specialists in the field of MS Rehabilitation on the HealthTalk MS webcast. How can we prepare physically and mentally for the next curve ball MS tosses us? How do we s... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1395208 Thu, 24 Apr 2008 04:50:06 +0100 1395208 http://www.medworm.com/index.php?rid=1389295&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-survivor-guilt%2F If there is one thing the doctors told me from the get-go, the thing they let me know no matter how hard I pressed them for answers was this: No one knows how MS is going to affect any one person over another. The next page of my disease isn’t written, let along the next chapter, so there is no way for anyone to read it. Still we ask, ponder and wonder. The truth, awful truth if you ask me, is that some people get clubbed by MS while others only receive the occasional switching. It hurts me deeply to see friends, dear people I’ve met since my diagnosis, slip faster and further than my disease course currently sails. I had my time; I was forced to use a cane from diagnosis and it took 5 years before that piece of furniture became a less frequent accessory. My disease progressed so rapid... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1389295 Mon, 21 Apr 2008 21:04:31 +0100 1389295 http://www.medworm.com/index.php?rid=1382661&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fa-new-rx-worm-eggs%2F Back in the day (don’t you love stories that start in such a fashion?) when antibacterial soaps and lotions hit the market with zeal, I was firmly entrenched against them. I was the director of a noted culinary school at the time and used my culinary pulpit to preach against the use of these concoctions. I was not the only one. Many doctors and researchers are beginning to lean toward a school of thought called “Hygiene Hypothesis.” The basis of thinking in Hygiene Hypothesis is that early exposure to infectious agents (getting dirty and sick when we’re kids) helps regulate the immune system for the rest of life. The use of antibacterial agents, particularly in children, can stunt the development of immune activity. Autoimmune disorders are nearly unheard of in the underdeveloped w... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1382661 Fri, 18 Apr 2008 18:22:27 +0100 1382661 http://www.medworm.com/index.php?rid=1379613&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-its-the-real-deal%2F It’s Thursday and once again it’s time to turn our attention to fellow, MS blogger, Kim Fabrizio. Today Kim kind of brilliantly addresses the seven stages of grief you experience after a MS diagnosis. Here’s a sneak peek at Kim’s post for today: “I know full well the seven stages of grief. I rapidly passed through shock and disbelief between day one and three of the hospital visit that ended with a diagnosis of RRMS. I tossed in a healthy dose of denial, too, along the way. Yes, I came right out and told everyone — family, friends, doctors — that I did not, did not have MS (In fact, I think I’ve been in denial for quite awhile. I’ve known something hasn’t been quite right with my health for a lot longer than the symptomatic period). I bargained befor... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1379613 Thu, 17 Apr 2008 20:03:53 +0100 1379613 http://www.medworm.com/index.php?rid=1361283&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fapril-recipe-for-success-ancient-food-for-modern-times%2F We take one posting each month to talk food. We’ve talked about healthful foods and preparations; we’ve talked about ingredients and shared recipes. The idea came from one of you. How many of you have ever eaten quinoa? Quinoa (pronounced KEEN-wa’) is an ancient grain from Central America and it packs a nutritional punch. It also has the added benefit of being a gluten free food. This grain is a complete protein and has almost a perfect balanced profile of essential amino acids. Quinoa is also high in lysine, methionine and cystine (which many grains and soy are lacking). Okay, I know. So it’s good for us but how does it taste?! Simple answer, I love this stuff. Below is a recipe using quinoa but don’t hesitate to play with this food. It can replace other grains in nearly every p... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1361283 Wed, 09 Apr 2008 20:00:03 +0100 1361283 http://www.medworm.com/index.php?rid=1325550&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-and-supplements%2F First, let me start the week by apologizing for my absence for part of last week. I was traveling on business and was just wrecked at the end of each day. I’m still not back 100 percent, but I’m back enough to jot a few words down. Many of us use complementary treatments for our multiple sclerosis. Whether they are simple things like stretching and yoga or more radical like the Master Cleanse diet or bee sting therapy. I’d like to talk today about something kind of in the middle: supplements. As simple as a daily multi-vitamin tab, as complicated as doctor-injected hormones, supplemental therapy has really taken off in the MS world. I’m having a good look (with doctors and my naturopath) at what might fit me best. Right now, I take a daily multi, calcium, chondroitin, fish or flax ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1325550 Tue, 25 Mar 2008 16:32:19 +0100 1325550 http://www.medworm.com/index.php?rid=1307939&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fpaging-dr-katz-please-report-to-healthtalks-ms-webcast%2F I have to admit my surprise to you. A few weeks ago, while hosting our last HealthTalk MS Webcast, I nearly fell from my chair in the broadcast booth. I suspect you can all understand the amount of work, by several dedicated people, that goes into one of these programs. I may be the voice you hear, but there are engineers, producers, doctors, lawyers, transcriptionists that all make one of these webcasts happen; the list is pretty phenomenal. As example, the script I write for my portion of the show has to be completed two weeks in advance so it can be reviewed by a slew of professionals. Don’t worry; I’m getting to the surprise… At the time I submitted my script for last month’s program, our “celebrity guest” with MS was not yet nailed down. I just left a place marker in that ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1307939 Mon, 17 Mar 2008 18:05:22 +0100 1307939 http://www.medworm.com/index.php?rid=1305027&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2F300-blog-posts-and-counting-an-anniversary-blog-for-life-with-ms%2F Can you believe it? Two years ago, today, I jotted a few words which turned out to be prophetic. My first blog entry at HealthTalk, Life with MS (way back when I didn’t even know what a “blog” was!!!) was entitled, “It’s all about you – really” and it really has been all about you, well I suppose all about US! I am astounded at the response to our little idea. I shouldn’t really take credit, it was actually a wonderful woman, Rose, at HealthTalk who had the idea and asked me to write. At that time we had but three bloggers at HealthTalk, now we are 22 plus faces on our blogosphere as well as art and audio blogs and we’re adding more writers soon (and I’ll bring that topic back next week…). I cannot travel within the MS community without someone asking me about the blo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1305027 Fri, 14 Mar 2008 22:34:41 +0100 1305027 http://www.medworm.com/index.php?rid=1297991&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-is-getting-under-my-skin-a-new-sensory-symptom%2F My nurse practitioner, Bobbie (you may remember her as my guest on last month’s Webcast) loves the way I describe my symptoms to her. Maybe it’s because I’m a nominal writer or maybe it’s because of my Irish heritage; likely it’s because ever since I was diagnosed with MS, I seem to live in metaphors. She once had me repeat the description of my legs, in clinic, so she could get it down verbatim. “My legs feel like two dead sticks, surrounded with liver and wrapped tightly with cellophane. And, the cellophane is the only thing I can feel; it’s like my skin is moving my legs.” I have had skin hyper-sensitivity, off and on, for most of the past six plus years. It’s like, if my skin is touched, grabbed or bumped it’s ok, but if I’m lightly brushed, stroked or scratched, ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1297991 Wed, 12 Mar 2008 16:41:13 +0100 1297991 http://www.medworm.com/index.php?rid=1292367&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fheres-one-of-my-ways-to-cope-with-ms-whats-yours%2F In her Author’s Notes, Allison Shadday proffered an idea which I think is sound. She suggested, “After reading so many interesting and helpful comments from you all, it occurred to me that you might want to consider starting an ongoing list of things that help you cope. Each of you can add to it as ideas come to mind. What do you think?” Well, Allison, I think it’s a GREAT idea! How do I cope? The sheer mass of techniques I use to cope should have crushed my multiple sclerosis years ago; how to pick just one to report? I guess I’ll share my “happy place” coping mechanism today. Since grade 6, when my hip, EST-inspired, teacher had us all use visualization to find a “happy place,” I have had a spot to which I retreat when times get tough. During this exercise, I followed e... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1292367 Tue, 11 Mar 2008 00:11:01 +0100 1292367 http://www.medworm.com/index.php?rid=1286495&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fis-ms-my-thing%2F This week has been full of speaking events. I’ve been to face-to-face meetings talking about MS research, team-building events for MS Walk teams, I’ve spent time at my local National MS Society chapter doing some volunteer work on activism issues and tonight I speak before 150 doctors, researchers and ancillary research staff about the new Fast Forward program. As the week draws to a close, I have to ask myself a question that was first asked of me by my sister, Mangie. Alright, her name isn’t Mangie, but that’s what I’ve called her since the day she started calling me “Dookie Man” (and that’s just one of those family stories which is best kept in the family…) Anyway, a few years ago, as I was starting to put myself out there in the world of multiple sclerosis, she said t... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1286495 Fri, 07 Mar 2008 14:00:38 +0100 1286495 http://www.medworm.com/index.php?rid=1275004&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhows-your-ms-today-in-like-a-lion-or-out-like-a-lamb%2F Ah, the first, albeit faint, strains of spring are in the air around my neck of the woods. Crocuses are up, peas and leeks go into the garden in a couple of weeks, and the days are tolerably lighter and longer. Early spring brings the smells of wet earth as the snow begins to melt and the sun warms the muddy ground. There is a promise in each day as the calendar advances. The progressive march of time is unstoppable. There is something comforting in the passing of one season to the next; the simple melding that come with transition. Obviously, however, as time marches on, so to does our progressive disease of multiple sclerosis. Each month, we take time in the first week to check in with one another. This open forum has become a consistent favorite with new readers and old. It’s a chance... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1275004 Mon, 03 Mar 2008 14:00:03 +0100 1275004 http://www.medworm.com/index.php?rid=1268690&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fauthor-notes-on-ms-and-your-feelings%2F For the past year, we’ve been reading and discussing Allison Shadday’s book about MS and our feelings. We’ve had a great time studying and sharing her text and now this book has drawn to a close. I know I’m not the only one who will keep this book on my reference shelf for future review; every day of life with MS brings new feelings to the fore. I am very happy to turn over the remainder of this final installment of the “MS And Your Feelings” book club to our first featured author; Ladies and gentlemen, I give you…Allison Shadday! It has been such an honor to have “MS & Your Feelings” featured as the first book to be reviewed in Trevis’ blog. I’ve spent time reading many of your comments about both the book and life in general. Your support and encouragement of ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1268690 Fri, 29 Feb 2008 19:43:58 +0100 1268690 http://www.medworm.com/index.php?rid=1263530&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Feven-people-without-ms-have-poop-issues%2F When a friend was potty training her son we gave the funniest gift. It was a book called, “Everyone Poops.” The idea behind the text (and illustrations) is to help potty-trainees understand that their bodies’ functions are natural, not something of which to be ashamed. This is something in which we MSers could all take a refresher lesson. Plain and simple, issues of the bladder and bowel are at best uncomfortable, almost always embarrassing, and sometimes dire. We all need to get over our social phobias of digestion and remember that everybody poops. Tomorrow night, I’ll be hosting our monthly HealthTalk MS Webcast called, “Getting Control of Bowel and Bladder Symptoms with MS.” My guests and I will be talking about issues that some find hard to discuss with doctors, family or ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1263530 Wed, 27 Feb 2008 22:36:11 +0100 1263530 http://www.medworm.com/index.php?rid=1256389&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-multiple-sclerosis-guinea-pig-for-the-greater-good%2F I’m pretty sure I mentioned an upcoming neurologist appointment in the past couple of weeks. That meeting went well and it appears that I still have MS (dang, and I was hoping…). My doctor and I spoke of all the things one speaks of in the exam room and then in his office, we started chatting about research. My guy is a respected investigator in the research field and I always learn from him during these meetings. He told me of a couple of studies for which he is recruiting and I thought, “What the hell?” I got all the paperwork and had a couple of interviews with research staff. There were two studies, one stage III, one stage II which interested me. Both are investigating oral MS therapy; yes, the MS pill! I was pretty psyched about the idea, but I am no longer alone when it ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1256389 Mon, 25 Feb 2008 22:17:47 +0100 1256389 http://www.medworm.com/index.php?rid=1245329&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-money-matters-how-do-you-pay-for-ms-drugs%2F Last month, we started a regular look at the price and cost of multiple sclerosis. At the end of last year, you gave me so many ideas that it’s obvious to me that it’s an important topic to you. I read a couple of years ago that the annual economic impact of MS on a family is somewhere between $50,000 and $75,000 USD per year. 50-75K is an awful lot of money and I expect that some of us don’t see how it could “cost” us that much. I’ll write more about that number next time, but I think it’s safe to say that the largest single chunk of that number is the price of our disease modifying therapies; our MS drugs. Shots that we take daily, weekly or every other day have a price tag between $1500 and $3000 per month. Those of us who get a larger dose of IV drugs are in for $3000-$70... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1245329 Wed, 20 Feb 2008 21:26:06 +0100 1245329 http://www.medworm.com/index.php?rid=1239384&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fnew-study-looks-at-b-cell-activity-for-ms%2F For the longest time, it seems that the immune cells we’ve been hearing about have been the T-Cells, known also as Thymus Lymphocytes (because the Thymus seems to be principally involved in their development). It has been long thought that these T-Cells are the primary culprit in demyelinization, being that T-Cells are in charge of “cell-mediated” immune response. Well, “we” might have thought that, but an ever larger group of researchers have been talking about the B-Cells. These cells are primary to humoral immune response, which has to do with secreted antibodies, as opposed to doing the actual immune work themselves. A study released last week by researchers at UCSF finds that these B-Cells may also have a hand in the destruction of our nervous system. Not the only hand, but ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1239384 Mon, 18 Feb 2008 20:48:43 +0100 1239384 http://www.medworm.com/index.php?rid=1213374&cid=t_168520_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fa-mid-winter-question-hows-your-ms-today%2F “Fine thanks, and you?” “Not too bad.” “GOOD, Good, good.” “Can’t complain.” “Alright.” “Great!” “Can’t complain, nobody listens…” (And my favorite) “Better bad breath than NO breath.” How many times haven’t we heard these and other rote responses to a question of greeting? How many times have you been guilty of such a patterned reply? When have we ever been about the niceties here at “Life with MS”? In the past year or so that we’ve had our monthly “How’s Your MS?” posting, you have taken the cocktail party out of your answers and been straight-up with us. I think that this is one of the points upon which our community is built. Other bloggers in the HealthTalk blogosphere have given our idea a whirl without much success. I joke that it�... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1213374 Thu, 07 Feb 2008 06:07:21 +0100 1213374 http://www.medworm.com/index.php?rid=485755&cid=t_168520_109_f&fid=35044&url=http%3A%2F%2Fadultaddstrengths.com%2F2007%2F02%2F24%2Fvancouver-area-web-blog-web-20-geek-wired-internet-community-directory%2F With the large number of techies/bloggers/web workers/geeks/wired folk/internet businesses/pick your preferred word in the Vancouver area, why isn’t there a comprehensive directory of such people and organizations/nonprofits/businesses? When I recently did a search for Google map mashups in Vancouver I expected to find a central blog or website listing them all. I didn’t and created a list of 10 Vancouver based google maps mashups but thought there’s a need for a centralized listing of all or most things internet/tech related in Vancouver. Yes there’s the Tyee’s BC blog list, and yes there’s Urban Vancouver and some Vancouver based blogs or blogging sites i.e. Metro Blogging Vancouver, Beyond Robson, Miss 604 and the local blogging/tech evangelist types ... Adult ADD Strengths blogs http://www.medworm.com/rss/comments.php?id=485755 Sat, 24 Feb 2007 18:12:17 +0100 485755