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 'gleason'. Sat, 03 Sep 2011 02:35:45 +0100 http://www.medworm.com/index.php?rid=5107744&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-ms-honeymoon%2F Diagnostics are better. Primary care doctors are more aware. Patients are seeking knowledge. The general population of people newly diagnosed with MS seems to be getting a bit younger. Truth be known, it’s likely that they are being diagnosed earlier in the course of multiple sclerosis, and that’s a good thing! Medications appear to be more effective early in the course of MS. That’s not just to say they seem to “work” better at keeping attacks down. The meds seem to slow the progression to the point where we may have some extra “good years” before (if) our MS decides to get progressive. Herein lay my thoughts for today: The MS Honeymoon. Many, if not most, of us can think back to some physical “oddities” which we experienced well prior to diagnosis. It wasn’t until a f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5107744 Mon, 08 Aug 2011 19:40:34 +0100 5107744 http://www.medworm.com/index.php?rid=5103426&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fuk-ms-patients-may-lose-one-medication-option%2F You know when the chief executive of the UK MS Society, Simon Gillespie, is quoted as saying “…people with MS would be better off living almost anywhere else in Europe…” in a press release, things are going terribly wrong for multiple sclerosis patients in that country. Mr. Gillespie’s remarks came on the heels of a decision by the British National Institutes for Health and Clinical Excellence, or NICE (the agency that recommends action to the National Health Service (NHS) as to what medication costs the NHS should cover for patients), that the oral MS med Gileyna (fingolimod) should not be paid for by NHS. NICE seems to have flat-out ignored science in their decision and focused instead on cost alone. Going so far as to compare the medication’s results to that of patients taki... Life with MS blogs http://www.medworm.com/rss/comments.php?id=5103426 Fri, 05 Aug 2011 19:37:35 +0100 5103426 http://www.medworm.com/index.php?rid=5078036&cid=t_406700_150_f&fid=35777&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FPharmalot%2F%7E3%2F0pYjzQ4aXt4%2F Earlier this month, the Florida Department of Health filed an administrative complaint against Peter Gleason, a physician, in connection with his 2006 arrest for off-label marketing of the Xyrem cataplexy drug, which is used to treat a sudden loss of muscle tone associated with narcolepsy. His talks were funded by Orphan Medical, which was bought by Jazz Pharmaceuticals. He recently pleaded guilty to one misdemeanor with no intent, sentenced to one year of probation and paid a $25 fine. However, the state failed to note one important detail - Gleason died this past February. The 57-year-old physician recently saw his medical licenses suspended in Pennsylvania and California, and the accumulated weight of the events apparently led him to commit suicide, according to his sister. We left mess... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=5078036 Thu, 28 Jul 2011 15:44:42 +0100 5078036 http://www.medworm.com/index.php?rid=4911679&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-would-you-spend-ms-charity-monies%2F In a recent event at one of the local multiple sclerosis charities in Seattle, I sat in on the preliminary results of an extensive survey of people living with MS in the Pacific Northwest. One of the areas that the survey touched upon was how people would like to see money donated to our cause to be spent. I’ll admit I was a little surprised by the direction the answers seemed to tend, but the researchers only had 5 days to evaluate the data and we all know that rough data is a dangerous thing. Contradictions were rife throughout the initial phases of the report. For example, the majority stated in one area that they wanted far less money spent on research while later in the hour-long survey these same people reported that they wanted more research and to know more about research. Oy! I�... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4911679 Wed, 08 Jun 2011 21:12:43 +0100 4911679 http://www.medworm.com/index.php?rid=4902568&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Ftime-changes-and-the-ms-body%2F ‘Tis the season for travel. Kids will soon be out of school, summer weather entices us to take holidays and my travel schedule for the next month has me on more planes and through more time zones than a healthy body should be subjected let alone one slogging through Multiple Sclerosis. I’ve heard of “recovery times” for the body. It takes a full year for the body to recover from general anesthesia, one day per hour of time change, a month for every year of a relationship after it fails (that might be more of a heart recovery than a body one…). If any of this is the case, my jumping back-and-forth from the east coast and my home time zone three times this month (and then on to GMT!) should leave me just about recovered in time for my birthday… in AUGUST! Travel can be st... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4902568 Mon, 06 Jun 2011 19:36:27 +0100 4902568 http://www.medworm.com/index.php?rid=4893704&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fn-glycosylation-could-this-be-the-cause-of-ms%2F A dear friend is in the office of General Council for the University of California system and he was excited to pass along some information on Multiple Sclerosis research just coming out of UC Irvine this week. It’s an important step to answering a question I asked of our community (serendipity; really!) last week about what causes MS. According to the in-depth study just published in Nature Communications of the biology behind the mouse “model” of MS and will likely be a platform from which to launch new research into a complex interaction of genetics, environment and an individual’s reactions to them which causes “Dysregulate N-glycosylation” – an improper manufacture of important cell sugars. The study concludes that the already suspect deficiency of Vitamin D – a hormon... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4893704 Fri, 03 Jun 2011 21:41:28 +0100 4893704 http://www.medworm.com/index.php?rid=4848060&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Finsurance-and-other-woes-with-multiple-sclerosis%2F It’s not the first time I’ve heard the stories and pleas of someone who is about to lose (or has already lost, or never had) health insurance. This past week a member of our community contacted me via our Life With MS Facebook page with her dilemma and I thought we could have a conversation about the general topic and see if we can’t come up with ways to help her and others who may face the same issues. “Lucy,” we’ll call her, says that she’s been using one of the MS drugs with great success for the past several years. She’s been on her father’s insurance and just found out that she’ll be aging off next month. Lucy cannot pay for the drugs or her doctors’ visits out of pocket and is looking for help. Also, she has one of those relatives who is beating her up f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4848060 Fri, 20 May 2011 19:26:56 +0100 4848060 http://www.medworm.com/index.php?rid=4821008&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthree-big-stories-on-the-ms-drug-front-including-one-very-shameful-one%2F This week has turned out to be quite the news week for multiple sclerosis drugs and their makers. There is an acquisition in the works for one pharmaceutical company, a report was released saying how often people living with MS deviate from their prescriptions, and a major settlement was reached with the leading MS drugmaker in a case that involved bribing doctors to prescribe their med. First the news that broke earlier in the week about Elan (of Biogen/Elan, make of Tysabri) pharmaceuticals selling off part of its drug delivery division to Alkermes Inc. The merger will leave Elan focused exclusively on drugs for neurological disorders. What this means for people living with MS is hard to say at this point – and may be for years – but we’ll keep our ears open for word from Ireland (... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4821008 Fri, 13 May 2011 22:07:55 +0100 4821008 http://www.medworm.com/index.php?rid=4789465&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fvote-for-trevis-and-he-could-win-big-on-behalf-of-multiple-sclerosis%2F Hi everyone — it’s Rose, Trevis’ editor. Trevis is too modest to let you know this, but he’s a finalist in the KOMO News-Brotherton Community Champions competition in Seattle. He was nominated by a reader of the Life With MS blog and chosen as a monthly winner in November 2010 for his amazing work as an advocate for people living with multiple sclerosis. It’s a tough competition with six great and equally worthy nominees, so he really needs your votes to win the big prize for the year. According to KOMO and Brotherton Cadillac, the top three videos will be featured at the Seattle International Film Festival, and the person whose video receives the most online votes before May 22nd, 2011 will receive the choice of a $5,000 contribution to his or her selected charit... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4789465 Thu, 05 May 2011 19:23:38 +0100 4789465 http://www.medworm.com/index.php?rid=4693399&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-post-mortem-of-events-leading-to-monday%25e2%2580%2599s-ccsvi-conversation%2F For many who are new to the Life With MS Blog, Monday’s spirited exchange about CCSVI served as something of a surprise. Though there was most assuredly an element in the extensive comments section who took direct aim at me for my addressing the topic the way I did (and some rather nasty retorts shouted back at them as well), I was very happy to see moderate voices joining in the conversation as well. One comment had to be removed (against my requests) due to its unacceptably vulgar language and Everyday Health’s Terms of Use policy on such things. You can still, if you’d like, read the comments of those calling me everything from “ignorant asshole” to a “laughing stock”, and labeling me in the “anti-CCSVI crowd”. I have come call myself a “hopeful skeptic” on the top... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4693399 Fri, 08 Apr 2011 21:20:29 +0100 4693399 http://www.medworm.com/index.php?rid=4684571&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fapril-showers-beg-the-question-hows-your-ms-today%2F We’re just six days into the month of April and if feels like “things MS” have crammed a month’s worth in already! We try to take one post every month and open it up to general conversation about multiple sclerosis — a place where each of us can reflect, question and share. Today, in particular, I’m happy to take a step back from our most recent blogging topic and focus on the people who have made the Life With MS Blog community one of the richest on the web. Time and time again, you have seen people reach out for answers in this monthly post and shared your compassions and experience. We’ve all learned a great deal from this monthly check-in. Please feel free to post possible topics for future exploration by our community as well. How’s my MS today? Well, as my opening lin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4684571 Wed, 06 Apr 2011 19:37:44 +0100 4684571 http://www.medworm.com/index.php?rid=4455371&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhen-is-it-time-to-see-someone-about-coping-with-ms%2F We’ve shared a lot about drug treatments and therapies for Multiple Sclerosis in these pages over the past few years. New therapies have come on the market for MS symptoms from walking and weakness to spasticity and neuropathy. What I’d like to talk about today is “the other” kind of therapy. At last night’s “Poker Night” — my men with MS self-help group — we had a wonderful guest speaker talking about emotional/psychotherapy. We asked her to specifically talk what might be called ‘warning signs’ that it might be time to talk to a professional about the emotional issues which surround MS. There are so many different types of therapy and they all have their merits for different people. We talked about depression and anxiety issues, about family coping, about spousal re... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4455371 Wed, 09 Feb 2011 23:19:34 +0100 4455371 http://www.medworm.com/index.php?rid=4445910&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhow-do-you-manage-your-ms-symptoms%2F The disease multiple sclerosis might as well be abbreviated MS to stand for “multitude of symptoms.” While we use a relatively small number of drugs to deal with the disease MS, we all rely upon a vast spectrum of approaches to treat our multiple sclerosis symptoms. I’ll not attempt to list the symptoms in this post because simply writing them down with descriptors would take up more space (and your reading time) than I think the benefit would warrant. Rather, I’d like you, as you so often and eloquently do, to take up that part of the conversation. For many, the idea of treating their disease feels a bit obscure because we usually don’t feel what the disease-modifying therapies are doing, but we feel the effects in what our MS doesn’t do or does less �... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4445910 Mon, 07 Feb 2011 21:41:10 +0100 4445910 http://www.medworm.com/index.php?rid=4382876&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-big-news-day-for-multiple-sclerosis-drugs-and-stock-markets%2F I suppose that it says a lot about our disease (as well as our society) when the vast amount of reporting on multiple sclerosis drug therapy is done in the financial papers and investment pages… The 24/7 news cycle is no longer just reserved for word of wars, terrorist attacks, and what celeb did what with whom in the wee hours on a Pacific atoll. Most of North America woke to — or in the case of a couple pharmaceutical CEOs, were awakened by — news that the European cousin to our Food and Drug Administration’s (FDA) drug approval wing, the Committee for Medicinal Products for Human Use (CHMP) had laid waste to two balance sheets while cementing another as the owner of the only MS pill OK’d for use in the Euro zone. For drug giant Merck, it’s been a rough autumn which has b... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4382876 Fri, 21 Jan 2011 23:05:01 +0100 4382876 http://www.medworm.com/index.php?rid=4338126&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhappy-2011-hows-your-ms-today%2F The bearded old year has made his exit and nappied babe is already two weeks old: time to ask our monthly query about your multiple sclerosis. No time like the New Year to take stock in where we stand and plan for our future. Also, we’ve found that a regular check in with ourselves and with those in the Life With MS Blog community has been very helpful to many. This open forum post allows you to ask questions, pose future blog topics, and offer support to others who bring issues to our cyber table. My MS has been all over the damned place these past few weeks. My sense of taste is mostly back to normal… mostly. In the vernacular: It still ain’t right! Sleep is still all mucked up and, well MS never seems to be the same day-to-day. So, floor opened. How’s your MS today? Cheers Trevi... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4338126 Wed, 12 Jan 2011 23:12:45 +0100 4338126 http://www.medworm.com/index.php?rid=4197224&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-lowered-holiday-expectations%2F Holidays can set us up for a fall. There has been comment chatter in the past about how so many of us with multiple sclerosis are Type-A personalities. This time of year brings out the A-plus in us. Some of you who read these words can relate to them with woeful memory but are beyond your superhero days. Others will know the pain of trying to rise to the occasion when simply rising from bed is a major undertaking. There are numerous shades of gray to our coping with MS and the holidays. I, this year, have taken a hybrid approach to the whole Thanksgiving holiday. Well… it’s not really likely that anyone close to me sees it as a hybrid; I am putting on the most insane dinner party I’ve ever contrived. This is one of those events which has been months in the planning and weeks in prepa... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4197224 Wed, 24 Nov 2010 18:17:18 +0100 4197224 http://www.medworm.com/index.php?rid=4023039&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-high-price-of-the-new-ms-pill%2F I’ve read and quoted figures for annual economic impact of multiple sclerosis at around $50,000-$75,000 per patient. Those numbers are HUGE, and some may not understand the term “economic impact.” It’s not necessarily out-of-pocket expenses each of of us has to pay. It refers, rather, to the cumulative cost of missed work time, insurance rate hikes, travel expenses to and from doctors’ appointments, lost pay raises and unoffered job advancements and the like – plus the out-of-pocket stuff. That is why there is such a broad range in those figures – loads of variables. One variable is obviously how much a drug costs us. The price we each pay for our disease-modifying MS therapies is loaded with variables. Included in such variables would be the “quality” of insurance covera... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4023039 Fri, 01 Oct 2010 21:38:58 +0100 4023039 http://www.medworm.com/index.php?rid=4013367&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhat-were-your-first-ms-symptoms%2F A diagnosis of multiple sclerosis changes everything… but does it really? Education of primary care physicians, diagnostic advances, and public awareness have changed the multiple sclerosis playing field drastically in the past decade or so. Many people are being diagnosed, in general, earlier than in the past. That said, many of us are at, around, or beyond that decade mark, and even though many are diagnosed earlier, it still takes a while. I heard the words “You have multiple sclerosis” at age 35, smack dab in the middle of that 20 to 50 year age range where 90-plus percent of MS is diagnosed. Looking back, however (and I’ve done this with my neurologist as well), I realize I had my first MS “attack” when I was 22. I can’t really think of any symptoms I may have encountere... Life with MS blogs http://www.medworm.com/rss/comments.php?id=4013367 Wed, 29 Sep 2010 18:39:57 +0100 4013367 http://www.medworm.com/index.php?rid=3911788&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fback-to-school-with-multiple-sclerosis%2F It’s that time of year again; pencil boxes and paper, laptops and dorm décor. It’s the time that the kids loathe, parents pray for and makes college freshmen squirm… Back to school! I’m wondering if any of our community is taking up the pencil and rule this autumn. Each year, as the days begin to shorten, the leaves pale and evenings require a wrap, I am drawn back to my days in education. I miss the students making their fumbling ways around campus, though I seldom miss the added traffic. I miss the sense of excitement at learning something new every day, every hour, every class… It’s not only formal classroom education that stirs me this time of year. I always try to pick up a few new non-fiction books so I might learn something new to toss out at the holiday cocktail partie... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3911788 Fri, 27 Aug 2010 21:11:14 +0100 3911788 http://www.medworm.com/index.php?rid=3823035&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fpaying-it-forward-with-ms%2F I don’t think it’s a particularly Seattle thing; in fact I expect that it’s likely more prevalent in many smaller parts of the country. Over the past couple of months, however, Caryn and I have been experiencing tiny bits of compassion known as “Paying It Forward.” On several occasions now, C has been in line for coffee (even in a drive-through) and been told that the person in front of her had paid for her coffee (or offered directly in come case). The typical reason – someone bought theirs the day prior. I love the idea of paying it forward and have been known to pick-up someone’s breakfast in a little spot without them knowing it or to leave an extra couple of bucks to buy the next person’s coffee. It’s just a little thing that we can do to totally change the trajector... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3823035 Wed, 04 Aug 2010 21:25:40 +0100 3823035 http://www.medworm.com/index.php?rid=3784401&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthings-weve-learned-from-life-with-ms%2F Living with multiple sclerosis can be an uphill battle. The Life With MS Blog, however, has always been a two-way street. As I prepare for a 2.5-hour MRI this afternoon, I began to think about how much I’ve learned from all of you here in the community. For the first time, after comments earlier in the month, I thought about getting an anti-anxiety drug for the trip into the tunnel. I’m not actually going to take anything; I usually fall asleep in the thing! It was, however, just one of the many examples of times when I’ve learned from this wonderful group. Be they coping skills or side effects of drugs, experiences or opinions – you really are the best group of co-passengers anyone could wish for on the stupid-arsed ride we call MS! I do have to away here shortly, and apologize fo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3784401 Fri, 23 Jul 2010 19:01:29 +0100 3784401 http://www.medworm.com/index.php?rid=3676782&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-research-studies-been-a-subject%2F As I mentioned earlier this week, my travel schedule has been hectic these past several weeks.  One thing travel affords as way of paying one back for the toll extracted from the body is countless hours on airplanes.  Hours I’ve used to catch up on some reading. One thing that I’ll blush a bit to admit to you is that I seldom read many periodicals, even the “important ones”, from cover to cover.  Sure; I’ll read many if not most of the articles but a few, I’ll just skim. Over the past weeks, I’ve read this last issue of Momentum front to back.  I was a little bit surprised to read articles about two research studies in which I participated as a “subject”. We often hear about and talk about clinical trials of new drug therapies for MS.  We seldom hear about the “qua... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3676782 Fri, 18 Jun 2010 21:35:56 +0100 3676782 http://www.medworm.com/index.php?rid=3641020&cid=t_406700_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fprostate-cancer-what-you-should-know%2F2010.06.08 When Dennis Hopper died of prostate cancer at age 74, my husband asked me: “Hey, I thought prostate cancer is slow-growing and doesn’t kill men.” Well, he’s right about it usually being slow-growing, but prostate cancer is still the second leading cause of cancer death in men. His question made me realize that there are some facts that everyone should know about prostate cancer. (more…) *This blog post was originally published at EverythingHealth* (Source: Better Health) Better Health blogs http://www.medworm.com/rss/comments.php?id=3641020 Tue, 08 Jun 2010 14:57:25 +0100 3641020 http://www.medworm.com/index.php?rid=3629764&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-and-the-pain-of-pollen%2F MS can and does find its way into just about every part of our lives (bloody uninvited guest!), often in ways we don’t even realize. Take the spring pollen season, for example. I’m not one who suffers from hay fever or seasonal allergies. Now and again, however, that much “junk” in the air will bring on a day or two of damned powerful sneezes. I’m one of those for whom hypersensitivity can be a symptom of multiple sclerosis; light touch, rough clothing scrapes and scratches can cause me exceptional, albeit temporary, pain. As my friends complain of watery eyes, scratchy throats and runny noses, I prepare for sneeze reactions which will leave me looking like I’ve been TAZERed! Not every sneeze will set off this reaction, but when I have an “MS Sneeze” (why not; we have the M... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3629764 Fri, 04 Jun 2010 15:39:46 +0100 3629764 http://www.medworm.com/index.php?rid=3515517&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-art-of-living-with-ms%2F “Nature abhors a vacuum”, Rabelas said; and so do I! Multiple sclerosis has carved our big gaping chunks from our lives; be it our career, family, activity or some other joy-giving entity.  MS leaves holes; some large some now so.  How to fill them? That question was one of the first to enter my mind once the initial slide abated (read about 6 months post Dx).  It’s still one with which I struggle and suspect that many others do as well. For me, writing, gardening, and volunteer work with the National MS Society (along with the extra time everything seems to take with MS) have filled much of the time I used to spend working; but not all of it.  I’ve learned that many people with MS have turned to art (in many forms) to not only fill the void of available time but to help either... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3515517 Wed, 28 Apr 2010 19:13:50 +0100 3515517 http://www.medworm.com/index.php?rid=3499196&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fethics-big-pharma-and-ms%2F When it comes to living a life with Multiple Sclerosis, the Life With MS Blog community has made mine much more bearable.  This blog, however, is not about me.  As I stated over 4 years ago, in our first posting, “It’s all about you!” So today, I’d like to bring up an important question.  I need to know what you want from this blogger; it’s a bit of an ethical dilemma for me. As our community has grown, so has our visibility to the greater MS world.  It is not simply patients and their loved ones who visit this blog.  More and more, I am approached by the members of the broader MS community; service organizations, other bloggers, care providers, medicos, pharmaceutical companies, etc… In the past, it has been pretty easy to stay above the fray, as it were. I simply used wh... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3499196 Fri, 23 Apr 2010 15:18:07 +0100 3499196 http://www.medworm.com/index.php?rid=3298469&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-music-of-the-mri%2F “Take a picture, what’s inside? Ghost image in my mind Natural pattern like a spider Capillary to the center” Sitting with our morning coffee on Sunday, our pack of dogs snuggled around and on top of us, Caryn and I were listening to NPR’s Weekend Edition. It’s a little thing we try to do on the weekends to recover from one week and steel ourselves for the next. As soon as I heard an introduction of a segment with the letters “IRM”, my attention was caught. It is the acronym, in many languages for what we know as MRI. I made that correlation quickly. What I wasn’t getting was that this was to be an interview with a French singer about her new album. Well, as soon as they played title track from Charlotte Gainsbourg’s release IRM, I knew that my assumption ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3298469 Mon, 22 Feb 2010 21:12:46 +0100 3298469 http://www.medworm.com/index.php?rid=3290901&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fgoodbye-to-our-behind-the-scenes-ms-advocate%2F Why is it, do you suppose ,that I had an easier time writing a farewell blog post to a fictional American president with MS than I am writing this goodbye? For nearly four years this blog has been quietly (to most of you at least) nudged along in its existence to the place of recognition we currently hold.  Through diligent behind the scenes efforts one cannot search for an MS blog and not have our Life with MS pop up “above the fold” on the first page of a search engine’s results page. New readers join us every day and partake (and sometimes participate) in our lively conversation, advice and experience because of her tireless work. It may seem that I have been at the helm of this ship but I’ve had a little (one might say “pixy-like”) voice on my shoulder, whispering things l... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3290901 Fri, 19 Feb 2010 19:21:15 +0100 3290901 http://www.medworm.com/index.php?rid=3280094&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhat-do-you-think-about-your-ms-society%2F As many of you are aware, I am an ambassador for my local chapter of the National MS Society (the US organization). There are “MS Societies” all over the world and, even here in America, each chapter runs things a little differently. Of course I know that not everyone has the same relationship with their chapter of the society.  I also have come to the understanding that some are vehemently opposed to these organizations. As I reviewed comments on the web about CCSVI I was taken aback to read that some of you were even calling for “war” against organizations (NMSS being one) who were conspiring to “keep us sick.” I do not think that this is a pervasive attitude but I thought it was time to check in on this topic. I’m not a member who thinks these societies are above reproach... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3280094 Tue, 16 Feb 2010 22:06:12 +0100 3280094 http://www.medworm.com/index.php?rid=3239709&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhows-your-ms-today-where-did-january-go-edition%2F It’s one thing for February to fly by at the speed of a cartoon character, but January is a full on all-the-days month; where did it go?!?! Every month we take time out in one of our postings to open the cyber floor 100 percent to your issues.  We begin by asking the title question, “How’s Your MS Today?” and it goes from there. Multiple sclerosis changes seasonally, new treatments come and go from the press, symptoms arise, disease progresses, and every month, we (try to) stay a constant in this post. It gives you a chance to check-in with others in our community and with yourself.  Update us on how things are going with you this month.  We’ll celebrate your successes and commiserate with your losses. How is my MS today? I’m having some old pain in my left foot returning. ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3239709 Wed, 03 Feb 2010 23:11:29 +0100 3239709 http://www.medworm.com/index.php?rid=3231679&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fweighing-in-on-ccsvi-and-the-liberation-treatment%2F Before I launch into this topic for a second (and more informed) time, let me remind us all that just because I write this blog, it does not mean I have all the answers…not even a plurality of them, really. Earlier in the month we posted my preliminary thoughts on the subject of Dr. Paulo Zamboni’s research into chronic cerebrospinal venous insufficiency (CCSVI) and what he calls the Liberation Treatment.  At that time, I stated a skepticism which I felt healthy but others equated to some form of conspiracy, in which I was a player. I am not. After reading the published papers of Dr. Zamboni, et al, I could sum up my thoughts in just four words: “I don’t get it.” I don’t get it, and that’s why I’m excited to know that there is further research into the premise. While the t... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3231679 Mon, 01 Feb 2010 22:59:33 +0100 3231679 http://www.medworm.com/index.php?rid=3142706&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-year-and-a-new-outlook-on-life-with-ms%2F A very happy New Year to all! We are finishing up our trip at a most fabulous 16th century castle (with free Internet), so I thought I’d jot a few thoughts before we make our way back to Dublin and onward to Seattle. This year, with the help of a bunch of Irish youngsters, I’ve decided to experience the joys of life…even if it’s a life with multiple sclerosis. I’ve had the wonderful opportunity to lodge at this castle on a number of occasions and every time, I am taken by its beauty and grandeur.  I walk the grounds (study Hazelwood at my side) and see the game kept on the grounds, the statuary and the old, old beauty.  Every time, I enjoy it as I did the first time. This, however, is the holidays and thus in Ireland the wedding season.  We arrived in the middle of many weddin... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3142706 Mon, 04 Jan 2010 20:44:56 +0100 3142706 http://www.medworm.com/index.php?rid=3111551&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthank-you-for-participating-in-the-ms-blog-contest%2F I must tell you that I was surprised, happy and touched by the number, quality and sincerity of all of our entrants to our MS Holiday Blog Contest!  I spent days before I left Seattle and hours on the plane to Dublin poring over stacks of wonderful, heartfelt accounts dealing with our three assigned topics. I hesitate to call the four blogs we have chosen “winners” because the simple act of putting thoughts to screen, of turning the mish-mash of experiences that multiple sclerosis has thrown our way, into the inspiring pieces of prose I have been reading makes every one of our entries a WINNER!!! We have made our decision, however, as to four very compelling stories of lives with MS. Those chosen four will be notified, via e-mail in the next day or so and over the next two weeks, you ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3111551 Mon, 21 Dec 2009 22:24:21 +0100 3111551 http://www.medworm.com/index.php?rid=3096975&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-holiday-travel%2F Back in the day, pre multiple sclerosis, when it was my job to fly to places for work, this was the time of year I absolutely loathed! I often referred myself (or rather my former wife referred to me) as a “professional traveler.”  While the flights were only the fastest way to get me to my real job, flying nearly a quarter of a million miles every year did make it seem as if it were my job to board an airplane in one time zone and deplane in another. These were pre-9/11/2001 days when I’d finish up a meeting in the car on the way to the airport, pop through security with my pre-printed boarding pass and, more often than not, be the last person to board before the door was closed. The holiday season brought out the folks, who hadn’t flown, it would seem, in years.  They would clo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3096975 Wed, 16 Dec 2009 22:55:25 +0100 3096975 http://www.medworm.com/index.php?rid=3079467&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-healthy-pantry%2F In last month’s recipe for success post we introduced you to my friend and registered dietitian, Heather Nucifora from F.E.E.D Consulting.  This month, for our healthy eating blog, I’d like to revisit another of the topics she proffered to our poker night gathering. Heather has devised a list of a few dozen things that will make cooking much easier and even though it may cost about $100 to make sure you’ve got everything on the list in your pantry in the long run it will be more economical! Heather recommends having the following on hand: Oils, Vinegars & Condiments: Extra virgin olive oil Canola oil or Peanut oil Nut/seed oils (sesame, etc) Butter Mayonnaise Vinegars (balsamic, red & white wine, rice & cider): Asian condiments (reduced sodium soy sauce, fish sauce, hois... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3079467 Thu, 10 Dec 2009 21:04:15 +0100 3079467 http://www.medworm.com/index.php?rid=3003928&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-recipe-for-success-apple-pie-oats%2F Breakfast: It’s the most important meal of the day. We’ve all heard that and, at some level, we understand that eating a good breakfast is good for us.  We also all know that, MS or no MS, we don’t always do that which is good for us… Each month we take one of our posts here at Life With MS and chat about food.  This month, I have a special recipe from my friend Heather Nucifora R.D.  Heather and I have been part of a team teaching nutrition, sanitation, menu planning/shopping and cooking to home health aides these past few months. Home Health Aides are trained assistants that help (in this case, older) people stay at home and live more independent lives, even if they need help with most of their daily routine.  It is not, of course, lost on me that I know of several people liv... Life with MS blogs http://www.medworm.com/rss/comments.php?id=3003928 Wed, 18 Nov 2009 16:33:59 +0100 3003928 http://www.medworm.com/index.php?rid=2977449&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-warning-label-for-tysabri%2F Tysabri has been a popular topic here on the Life with MS Blog for several years.  In fact, one post on the subject has nearly 1300 comments and is still an active source for people taking or thinking about taking the drug more than three years after we posted that blog. Events of this past month, and this past weekend specifically, bring the topic to the fore once again. In early October of this year, the pharmaceutical companies which make and market Tysabri were acknowledging 13 cases of the rare and potentially fatal condition progressive multifocal eukoencephalopathy (PML) Last week it was disclosed that an additional 10 cases of PML were reported (most of them in Europe; in fact, most of the now 24 reported cases are in European MS patients).  To say that finding information on any... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2977449 Mon, 09 Nov 2009 22:23:10 +0100 2977449 http://www.medworm.com/index.php?rid=2931138&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fnatural-treatment-for-multiple-sclerosis%2F For many years now, I’ve been hearing stories of and from people who have sworn off any of the MS drug treatments.  For some, it’s an economic decision, as they just can’t find a way to pay for their drugs.  For others, none of the drugs seem to work for them or the side effects were worse than their disease had been.  Some I’ve heard from feel like they have had multiple sclerosis for so long that the drugs wouldn’t do them any good now.  The final grouping of folks I’ve heard about/from are making a conscious choice to go off their disease modifying therapies to go a more natural route. I have always been intrigued by people’s reasoning to this.  Modern medical science has given us a shot at a more normal life; why wouldn’t one take that shot? The simple answer is th... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2931138 Mon, 26 Oct 2009 20:17:49 +0100 2931138 http://www.medworm.com/index.php?rid=2920378&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhaving-to-say-no-because-of-ms%2F Beyond the most prevalent multiple sclerosis symptom of profound fatigue, there is one other “symptom” we have all, likely, experienced: having to say “no.” On the occasion of our small family wedding, Caryn and I threw a bit of an informal barbeque of paella, salad and bread in our back garden (as “informal” as a gathering of 120 adults and scores of kids can be).  As you might surmise, it’s probably not a surprise that many of our guests are members of the multiple sclerosis community. It was a whirlwind of activity leading up to the party…and most of the way through it as well. It was well after 10:00pm when I was able to take a break and settle into the party myself.  Only then did I begin to realize how many people weren’t at the party. Over the next several days a... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2920378 Thu, 22 Oct 2009 18:39:15 +0100 2920378 http://www.medworm.com/index.php?rid=2890793&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fgetting-a-head-start-on-holidays-with-ms%2F Multiple sclerosis or no multiple sclerosis no one likes to see Halloween decor in the stores right alongside the Christmas aisle (on the first of October, for pity sake!) more than I.  So it may seem very out of character for me to be the one to open a conversation about holiday prep this early. I have, however, noted over the past years (and months in reference to my current family gathering last weekend) that a little energy expended in early planning and execution makes the big events go so very much smoother. My typical regime has me thinking of the Thanksgiving Day menu sometime in the week or two after my August birthday. Early as it may seem, by beginning the thought process and jotting a few notes on possible themes, foods I’ve seen in the past year, potential guests the weeks ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2890793 Tue, 13 Oct 2009 17:40:06 +0100 2890793 http://www.medworm.com/index.php?rid=2851933&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-being-prepared%2F Just about everyone I know grew up understanding the concept of spring cleaning.  After a long winter of short days and long, cold nights in which the home becomes something of a hibernation chamber, a top-to-bottom scrub and re-org seems appropriate. I look at much of life through a different, health-skewed lens, and think that fall cleaning makes more sense to me. Over the past several years of taking medications for my multiple sclerosis, I’ve learned the art of preparation.  Knowing it or not, I think we’ve all learned something about being prepared from our MS. I learned to have plenty of OTC antiinflammatory drugs in the drawer when I was on interferon therapy.  When Novantrone would take me out of circulation for a week or so, I learned to make sure the house was stocked with... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2851933 Thu, 01 Oct 2009 15:59:48 +0100 2851933 http://www.medworm.com/index.php?rid=2809776&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-reluctant-voice-for-multiple-sclerosis%2F I began a posting over three years ago by stating that I was not “the guy that gets phone calls like this on a regular basis”.  That phone call requested my voice at a press conference on the topic of stem cell research alongside two US Senators.  This morning,  I opened an international pharmaceutical company’s newest research facility (specializing in inflammatory diseases) here in Seattle. It is not easy for me to admit to you but, I guess that I have become “that guy”… None of us could have expected this lot in life: multiple sclerosis.  Not a single one of us knew what to do in the moments, days and weeks after diagnosis.  I doubt I’m alone in the sentiment I expressed in our interview blog that I would trade every lesson I’ve learned for health. Still, it’s not... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2809776 Fri, 18 Sep 2009 21:51:26 +0100 2809776 http://www.medworm.com/index.php?rid=2800561&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fseptember-ms-recipe-for-success-tomato-salad%2F Tasty, easy, good for us…these were the criteria we set forth back in 2007 when we started the whole MS recipe for success blog concept.  Well, today I have one that is all of the above and it’s the perfect time of year for it (at least in my garden)! Even if you don’t have a patch of dirt where you are raising your own veggies this year, you can find fresh, ripe tomatoes in nearly every good supermarket, produce stand, green grocer or farmer’s market.  They are packed with beauty for the senses; bright in color, juicy in texture, sweet and sour at the same time. There have been a few sunny afternoons this summer that I’ve had the stinging juices of a still-warmed by the sun tomato running down my chin in the back garden; it’s a personal joy.  To share the freshness of these... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2800561 Wed, 16 Sep 2009 17:26:06 +0100 2800561 http://www.medworm.com/index.php?rid=2789098&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-relationships%2F Sometimes multiple sclerosis puts you (at least me) into a position you might not expect… I have been asked to sit on an advisory committee which is putting together a retreat for couples where one partner has multiple sclerosis (I must admit the hilarity as I’ve had three remarkably unsuccessful relationships since my diagnosis)! Reading the pre-registration surveys that these folks filled out was a real eye-opener!!! The place where each side of these relationship equations “lives” is hardly balanced.  For example; when asked if they felt there was a “health balance” in their relationship, the partners with multiple sclerosis answered 75 percent Yes.  The partners without MS only answered 50 percent in the affirmative. When asked “why” they thought the relationship was ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2789098 Fri, 11 Sep 2009 20:48:58 +0100 2789098 http://www.medworm.com/index.php?rid=2782189&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-chance-to-give-your-opinion-on-ms-research%2F This week, I was contacted by a researcher on the topic of MS and genetics.  Her name is Virginia Hughes and she is presenting to a panel of experts next week.  The reason for her contact was to ask YOU about MS! She is conducting an online survey of people, living with MS and their families.  The information is, obviously, confidential and will further multiple sclerosis research by informing researchers about where WE would like to see the field of personal genomics go, in respect to our disease. I have a crazy busy day today, but made time to take this survey.  It’s only a few questions long and it wasn’t painful at all! I ask you to go to the survey site and answer her questions.  Then, if you’re feeling particularly helpful, pass the link on to friends and family in the MS ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2782189 Wed, 09 Sep 2009 21:08:21 +0100 2782189 http://www.medworm.com/index.php?rid=2762020&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fseptember-and-your-ms-how-is-it-today%2F End of summer, back to school, hunkering down for winter and multiple sclerosis weaves its way into every bit of the action. September has befallen us and per our norm, I’m using the first Wednesday of the month to open the blog to you by asking the question: “How is your MS today?” The events of life that I wrote in that first line can cause added stress to a schedule, a life…a disease.  Some people I know find that autumn is either a good or particularly bad time for their multiple sclerosis; how is it for you? This is by far and away our most popular regular posting.  As I look back on the past several years of the Life with MS blog, I see that many of you made your first remarks to us using this venue.  I’m very happy to see that so many of you have become regulars in the ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2762020 Wed, 02 Sep 2009 21:06:16 +0100 2762020 http://www.medworm.com/index.php?rid=2730282&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwould-you-recommend-your-neurologist-for-multiple-sclerosis%2F Multiple sclerosis is not a particularly easy disease to diagnose.  Multiple sclerosis has no formulaic treatment.  There is no cure. We rely, heavily, on the knowledge and experience of a well rounded medical care team (along with a strong dose of knowledge of our own bodies) to find a treatment path that works for us.  It’s a lot to ask of ourselves and we cannot do it alone. In a comment the other day Judy asked if anyone knew of a good neurologist in her area (Alabama), and that got me wondering… I’m asked quite oft, here in Seattle, who my neurologist is and if I would recommend him. (BIG “yes” is always my answer to that question).  How about you? Are you happy with the care you get from your neurologist? Do you have a “general” neurologist or do you see an MS speci... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2730282 Mon, 24 Aug 2009 16:46:49 +0100 2730282 http://www.medworm.com/index.php?rid=2716129&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Faugust-ms-recipe-for-success-the-boston-cooler%2F Between a stressful schedule, multiple sclerosis flare/MS progression and a second Seattle heat wave, I need a drink! We’ve been taking a post each month to proffer a recipe each month and this monthly recipe calls for a cool and refreshing drink from my youth; a drink, a non-alcoholic drink that is unusually enough for me. I’m not much of a soda/pop/Coke/soft drink/call-it-what-you-will drinker.  In fact, with the exception of the occasional soda at a movie theater (something about Dr Pepper and popped corn just go together for me) the only soda I seem to drink is ginger ale in my bourbon (but only in months with an “R”). A few stray tins of Vernors in my bar have brought this drink back to my memory and it’s crisp, refreshing bite has transported me back to my youth. One of my... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2716129 Wed, 19 Aug 2009 21:00:01 +0100 2716129 http://www.medworm.com/index.php?rid=2695540&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fhappy-august-hows-your-ms-today%2F The multiple sclerosis community here at Everyday Health is growing like crazy!  In one day, last week, our blog on the heat and MS garnered over 60 comments (and we know that most people read and don’t comment). I’d like to introduce our “newbies” to our monthly posting which gives you a chance to check in with the rest of us.  “How’s Your MS Today” has been going on for a number of years now.  It’s our chance to take a look back at the previous month and see how/if our MS has been changing. Many find it helpful to glance back at their comments over the past 6-12 months before heading in for a neuro appointment; I know I do! We also mine the comments in this section for new ideas and topics for future blog postings. I’ll go first: My MS today (for the past week, reall... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2695540 Wed, 12 Aug 2009 21:05:54 +0100 2695540 http://www.medworm.com/index.php?rid=2688822&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Flies-we-are-told-and-multiple-sclerosis%2F In the past few weeks, I’ve read half truths, falsehoods, misleading statements and flat out lies about the health care bills being debated in congress. I’m sick of it! It got me wondering about your multiple sclerosis and things you’ve been told that were less than the truth. Many of us were diagnosed years ago and, let’s face it, medical science has come a long way in understanding our disease.  Some of the things we were told then may have been current thinking (think “pain is not a symptom of MS”).  Some of what we were told, however, is simply not true. I’m still recovering here, from the heat and a schedule that I would have had a hard time with “before”.  I’ll keep this post brief and to the point… I’d like to hear from you what things you were told (by do... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2688822 Mon, 10 Aug 2009 22:43:18 +0100 2688822 http://www.medworm.com/index.php?rid=2667605&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fextreme-heat-in-seattle-is-causing-my-ms-to-pseudo-exacerbate%2F Let me begin this post with a humble and heartfelt apology for not posting last week.  I’ve been overwhelmed with two major events that were making 16 hour days my norm.   That’s over and I’m back on track, sort of. The stresses of my last fortnight coupled with our annual four-day heat wave in Seattle have brought some “old friends” back for a go.  In other words, I’ve been suffering flares of pseudo-exacerbations.  I know heat plays havoc with the electrical circuitry of my central nervous system, a fever will set me down pretty well too. Long, cool showers or soaks in a tub help lower my body’s temperature when the mercury soars.  It’s nice to know that I can do something to relive those symptoms. I’m wondering what, if anything has brought on a flare of pseudo f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2667605 Mon, 03 Aug 2009 22:00:44 +0100 2667605 http://www.medworm.com/index.php?rid=2657823&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fextreme-heat-in-seattle-is-causing-my-ms-to-pseudo-exacerbate%2F Let me begin this post with a humble and heartfelt apology for not posting last week.  I’ve been overwhelmed with two major events that were making 16 hour days my norm.   That’s over and I’m back on track, sort of. The stresses of my last fortnight coupled with our annual four-day heat wave in Seattle have brought some “old friends” back for a go.  In other words, I’ve been suffering flares of pseudo exacerbations.  I know heat plays havoc with the electrical circuitry of my central nervous system, a fever will set me down pretty well too. Long, cool showers or soaks in a tub help lower my body’s temperature when the mercury soars.  It’s nice to know that I can do something to relive those symptoms. I’m wondering what, if anything has brought on a flare of pseudo f... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2657823 Thu, 30 Jul 2009 21:40:22 +0100 2657823 http://www.medworm.com/index.php?rid=2613993&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fits-been-july-for-a-while-so-hows-your-ms%2F Did multiple sclerosis grab hold of my brain in the first week of the month?  Did it grab hold of yours? We usually try to open the cyber floor for an open discussion of how everyone’s doing with their MS midway through the month.  However, this month it seems to have totally slipped my mind!  Must have slipped everyone’s mind (save Rusty, but it took her a couple of weeks too)! I’m writing this at midnight (PST) and I’ve yet another busy day that begins in just a few short hours so I’ll keep this brief. As you read earlier this week, I’ve started this Low-Car Diet and EVERYTHING away from the house takes longer now.  When you couple that with the heat and the extra walking this busy week is becoming something less than pleasant. I’ll make it through… we always do. ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2613993 Fri, 17 Jul 2009 17:31:06 +0100 2613993 http://www.medworm.com/index.php?rid=2606148&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-recipe-for-success-the-low-car-diet-and-cheese%2F First that’s not a typo, I really do mean low-car as in the automobile. Each month we take one blog posting to chat about healthful, tasty, easy was to feed ourselves and our family (and sometimes our friends).  Today, I’ve set out on a new “diet” and want to share some of the tasty details with our Life with MS community. The folks at Zipcar have offered me (and about 30 other Seattleites) an opportunity to get fit, think outside our norms and save the planet at the same time.  Today, we brave few turned in our car keys and began the “Low-Car” Diet. You’ll be able to follow my progress (and three others from different cities) on the Low-Car Diet Blog on Everyday Health as well as on Zipcar’s Low-Car Diet Web site. I intend to stick to the rules of this diet (likely b... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2606148 Wed, 15 Jul 2009 21:22:30 +0100 2606148 http://www.medworm.com/index.php?rid=2598407&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fruminations-of-a-life-with-multiple-sclerosis%2F “My name is Trevis Gleason and I live with multiple sclerosis.” I can’t tell you how many times I’ve begun a speech with those words.  Someday, someone’s going to get the Twelve Step joke and blurt out from the back of the crowd, “Hiiiiii, Trevis.”  Until that day, it will be my own little private joke, I guess. I wonder, sometimes, if I haven’t let multiple sclerosis define me. More correctly, I suppose, is that I wonder if I haven’t defined myself as multiple sclerosis.  Even that is too simplistic.  Likely it’s closer to the truth if I say I’ve used MS to redefine the person I have become.  It’s a little trick I’m guessing we all play on ourselves; this redefinition we’ve been forced to undertake an... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2598407 Mon, 13 Jul 2009 21:59:14 +0100 2598407 http://www.medworm.com/index.php?rid=2512251&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-self-help-groups-whats-your-take%2F As many of you know, I lead a National MS Society self-help group in Seattle for men with MS.  This morning, as the sun shone brightly outside my study window, I dialed in to a training call with other leaders around the country. The topic of the call had to do with “marketing” our groups to increase attendance. Ideas from presenters ranged from the mundane (like posting fliers in doctor’s offices) to the hi-tech (”tweeting” and the like).  My group has grown “organically” - ok, The Seattle Times front page article about our group didn’t hurt. But it got me wondering about the thousands of you in our Life with MS Blog community: Do you attend any organized self-help groups having to do with your MS? If not, why?  If so, what do you think o... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2512251 Wed, 24 Jun 2009 21:59:07 +0100 2512251 http://www.medworm.com/index.php?rid=2469802&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-recipe-for-success-fresh-lemonade%2F It wouldn’t be too self-indulging to say that life has, in the form of multiple sclerosis, given each of us a big, fat lemon!  In figurative ways, over the past three years, many have offered comments as to how they’ve made lemonade.  Today I’ll offer a recipe for the real thing. As summer makes its way up the globe, temperatures rise and motivations dive.  It’s just too hot to get anything done for “normal” people.  Throw MS into the soup and, well, somebody cool me down! Lemonades of my youth were typically derived from a powdered mix and left me wondering what all the fuss was about.  Even today, most people only know “real” lemonade at a county fair or an urban street festival. The ease with which a quick glass of pucker can be rustl... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2469802 Wed, 10 Jun 2009 19:59:56 +0100 2469802 http://www.medworm.com/index.php?rid=2442196&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fthe-ms-webcast-from-the-aan%2F As many of you know, a couple of weeks ago, I attended and blogged live from the American Academy of Neurology’s conference here in Seattle.  During that busy week, I snuck away from the event, along with Dr. Jeffery Cohen, for a quick interview. The results of that afternoon are now posted for your listening and educational pleasure. To get a chance to sit down in studio with Dr. Cohen was a real treat.  Not only is he a well respected researcher (who introduced some very interesting phase III data on the use of Fingolimod for MS) he is also a sought after clinician for many people living with MS in the Great Lakes region. Our conversation spanned his research along with some of what he thought were the highlights of presentations from the conference.  Taking a couple of hours ou... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2442196 Fri, 22 May 2009 06:36:36 +0100 2442196 http://www.medworm.com/index.php?rid=2365300&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fall-ms-all-the-time%2F The title refers to what several non-MS neurologists are calling the annual conference of the American Academy of Neurology, to be held next week in my hometown of Seattle, Washington.  They say that jokingly because multiple sclerosis is taking a prominent spotlight in this year’s event and you’ll be there!  Well, sort of… I’ll be attending the event this year with a press pass and reporting live from the conference all week long.  Our stalwart editor and community producer, Natalie, has agreed to the extra work of posting something from me every day during the event. There are hundreds of pages of event itinerary to be scanned for exactly which speeches, presentations and events I’ll want to attend.  The volume of information on MS in total is staggering! Also, and I’m ve... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2365300 Fri, 24 Apr 2009 20:47:35 +0100 2365300 http://www.medworm.com/index.php?rid=2321720&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fsun-sensitivity-and-multiple-sclerosis%2F The long, damp winter chill seemed to finally lift this weekend and just in time for our local Walk MS events.  It was a busy weekend and, while I would have rather spent the warming days in the gardens getting at the long unattended weeds, it was wonderful to see so many people out to help us fight for the MS cause. The sun, in fact, boosted the temperatures into the 60s and the clear, blue skies rained down our daily doses of vitamin D all day long.  Caryn (my fiancée) and I, along with a couple of friends in town for the walk, even dined outside in the evening! As day slipped into evening, we all felt the effects of the day’s exposure to the sun…and that got me thinking. Over the years, I’ve taken several drugs for my multiple sclerosis carrying a warning label having to do wit... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2321720 Mon, 06 Apr 2009 20:26:11 +0100 2321720 http://www.medworm.com/index.php?rid=2321730&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fms-book-club-finishing-the-last-lecture%2F Today, we finish reading Randy Pausch’s book, The Last Lecture. These last two sections are filled with short snippets from a lifetime of gained knowledge.  I suppose that once one gets his head around the fact that he is short for this world, the results of some hard-fought lessons become painfully clear. The desire to continue imparting knowledge, even in the final days of his life, must have been a forceful drive in our professor.  Even after he had devoted so much of his remaining months to writing his actual “last lecture” at Carnegie Mellon, he continued to put to paper his life’s philosophies and some context for those who had grown to admire him. I’m curious, how many of you have actually watched Professor Pausch’s “Last Lecture?” ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2321730 Mon, 30 Mar 2009 21:33:55 +0100 2321730 http://www.medworm.com/index.php?rid=2295062&cid=t_406700_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=2295063&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fstem-cell-research-back-in-the-spotlight%2F A blog posting about multiple sclerosis and stem cell research is always a hot-button issue; however, with the signing of a new Executive Order this month, I thought it appropriate to bring up again. When we’ve discussed stem cell research before there hasn’t been much doubt as to which side of the discussion I’m on.  There are many simple, scientific facts and many complicated ethical issues in this debate.  I don’t think that any of us are going to change anyone’s mind on the topic at this point. I’d like us to take a moment today and do something for which I have little affinity: looking backward. My biggest issue (and trust me it’s not easy to choose from the many I have on the topic) with the two thousand, seven hundred and sixty eight days our best minds were stopped ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2295063 Fri, 20 Mar 2009 21:57:17 +0100 2295063 http://www.medworm.com/index.php?rid=2259899&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-weight-issues%2F We’ve been taking one posting per month for healthy eating ideas here at Life with MS for quite some time now.  Usually, we look at one particular food or recipe or at least a specific MS/food topic. Today, as I have been for a while now, I was searching around our new home; EverydayHealth.com.  I’ve found some really great “stuff” in here and wanted to point out a few areas that might be of interest to people living with both MS and “weight management” issues. First, the Weight Management center offers a wide range of tools from “ask the experts” Q&A to weight loss blogs. Further investigation into the tabs of this page offer discussions of “Food and Mood”  “Meal Planning”  and information on dietary supplements. I’ve found the articles well researched an... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2259899 Thu, 12 Mar 2009 18:14:58 +0100 2259899 http://www.medworm.com/index.php?rid=2249493&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fa-new-multiple-sclerosis-webcast%2F MS community you asked for it, now you’ve got it.  Everyday Health has posted our latest webcast about multiple sclerosis titled, “Multiple Sclerosis Clinical Trials and Research.” Unlike our previous webcasts this one was not broadcast live.  Still, we used many of your questions that you submitted here on the “Life with MS” blog and I hope you’ll continue to do so in the future. Yes, the future!  We happily have another MS webcast scheduled for May. I encourage you to grab a cup of coffee (or be like me and pour yourself something a little stronger) and login for an hour of really interesting information.  Our panel included prominent researchers from the US and Canada as well as a person living with multiple sclerosis who has been participating in an oral MS drug trial. ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2249493 Fri, 06 Mar 2009 22:09:36 +0100 2249493 http://www.medworm.com/index.php?rid=2223205&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fmultiple-sclerosis-and-crying%2F As many of you know, the “Life with MS” blog is a place for everything and everyone with, around, about, for and against multiple sclerosis.  Thrice weekly (well, for the most part…) I take up the responsibility you have bestowed me with the most precious vote you have; your time. Over nearly three years (our blog’s anniversary is next month) we have, together, covered much about multiple sclerosis; and some having very little to do with our disease at all.  Today is another one of those… I wept on Saturday. I will admit that my MS has brought me to tears from time to time over the past eight plus years I’ve lived with it.  These tears, however, were something different and were not at all unwelcome.  They do, as I think about it, have some ref... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2223205 Wed, 25 Feb 2009 20:08:26 +0100 2223205 http://www.medworm.com/index.php?rid=2195235&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fwww.everydayhealth.com%2Fblog%2Ftrevis-life-with-multiple-sclerosis-ms%2Fwhat-ms-looks-like-in-other-parts-of-the-world%2F A long time ago on this blog I conducted an informal poll of our readers asking them where they were from.  We ended up with a number that consisted of 20 different countries; that’s some coverage! One thing I think of a lot is the prevalence (or lack thereof) of multiple sclerosis in some countries versus others.  I’ve wondered: is it possible to live in a place where no one has ever even heard of multiple sclerosis?  What is it like to try to get MS services in those places?  How hard is it to find a neurologist specializing in multiple sclerosis?  I recently found out that I’m not the only one to wonder. Last fall the World Health Organization (WHO) compiled all of its data into a very user friendly “Atlas” of MS.  This data updates a previously published version of 2006... Life with MS blogs http://www.medworm.com/rss/comments.php?id=2195235 Wed, 18 Feb 2009 21:12:52 +0100 2195235 http://www.medworm.com/index.php?rid=2129419&cid=t_406700_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=2107983&cid=t_406700_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=2075157&cid=t_406700_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_406700_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=2047804&cid=t_406700_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=2027780&cid=t_406700_150_f&fid=35777&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FPharmalot%2F%7E3%2F479561855%2F That’s the claim made in a lawsuit filed by Carolyn Gleason, a former rep who visited hospitals and other big medical institutions in northern Florida to sell Mycamine, an anti-fungal med that Roche co-promotes with Astellas Pharma. The trouble began, according to the lawsuit, when a regional manager wanted to boost declining sales by relying, in part, on off-label promotions. In her lawsuit, Gleason charges she was sexually harassed and, eventually, fired because she refused to follow orders to market the drug for “all purposes,” such as telling docs the drug could be used in lower-cost, 100mg doses to treat candidemia. The FDA, though, had not approved Mycamine for that use or dosage. As an example, she cites a June 2007 club luncheon at which a presentation was being m... Pharmalot blogs http://www.medworm.com/rss/comments.php?id=2027780 Tue, 09 Dec 2008 14:22:30 +0100 2027780 http://www.medworm.com/index.php?rid=1981393&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Foh-my-aching-back%2F So, I expect that I am not the only person living with MS who is developing back issues. Today, we’re going to talk about that. Maybe it was all of you women talking about cute, high heels which got me thinking about this. Ever since diagnosis in 2001, my left side had been my weak side. Sometimes you wouldn’t know it; we all compensate. In fact, I think sometimes about FDR. He would be buckled and braced and use inertia to move his fractured body and wobble one side then the other to a podium like a stiff-legged, wooden cowboy; throwing his weight from one side to another. I’m not that bad, but I do know that after years of compensation, my back is toast! I use good over-the-counter orthotic inserts in my shoes and that helps (though they don’t fit in my slippers which I am forced... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1981393 Fri, 21 Nov 2008 21:02:23 +0100 1981393 http://www.medworm.com/index.php?rid=1960485&cid=t_406700_113_f&fid=34634&url=http%3A%2F%2Fwww.emrandhipaa.com%2Femr-and-hipaa%2F2008%2F11%2F13%2Freasons-small-practices-arent-implementing-an-ehr%2F I’m sad that I didn’t see this list until now. Mike Gleason provides an interesting list of reasons why small practices aren’t implementing an EHR as fast as we’d like them to implement. Here’s his list of 10 reasons: Fear Ego Money War Stories No one wants to go first Product not perfected yet Waiting on Govt mandates Waiting on hospital install or Stark gift I have people for that Change A really great list. Mike also discusses each of these points. As time permits I’d love to take some of his points and write some comments on each. More important for this post, I wondered what other reasons might be missing from this list. Here’s a few others that I came up with: I’m retiring soon I don’t like computers (similar to “Computers S... EMR and HIPAA blogs http://www.medworm.com/rss/comments.php?id=1960485 Fri, 14 Nov 2008 07:18:58 +0100 1960485 http://www.medworm.com/index.php?rid=1947738&cid=t_406700_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=1892191&cid=t_406700_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=1845208&cid=t_406700_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_406700_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=1794772&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Forganization-and-ms%2F This week, at my “Poker Night” which is a men’s MS self-help group, we had a woman named Stacey come and speak on the topic of organization. She has an organizing business and introduced herself as a “professional organizer.” Now, before you say it, there was a resounding chorus of exactly what you are thinking at Poker Night, “Is there such a thing?” She laughed, we laughed and we got on with what many of the guys thought was going to be a droll dissertation and variations on the theme, “A place for everything and everything in its place.” Boy, were we wrong! This Stacy, who’s blog about organizing (I’m asking Natalie to add to our recommended blog list) had loads of tips for getting and staying in charge of our own space; ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1794772 Tue, 16 Sep 2008 00:43:05 +0100 1794772 http://www.medworm.com/index.php?rid=1775776&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fa-new-look-for-healthtalk-and-our-blog%2F You probably can’t help but notice the new look of our HealthTalk Life with MS blog. It is part of a whole new look for HealthTalk! As with any major rollout, there were a few bumps in the road that are being fixed. This project has taken much of the time that Natalie, our editor and general blog goddess, has had for editing and posting for the lot of us. We’ll have to give her a pass on this one, friends. I wanted to jot a quick note to you all to let you know the reason why there has been a lapse in postings and why some of you may have encountered that the comments were disabled over the weekend. We’re back on schedule and new and improved. I’ll keep writing and you keep commenting. In the meantime have a look around HealthTalk. It’s got lots of enhanced features and I find i... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1775776 Tue, 09 Sep 2008 00:00:42 +0100 1775776 http://www.medworm.com/index.php?rid=1747060&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fbook-club-blog-the-soul%2F This month’s book club blog brings us to the end of Dawn Bailiff’s book, “Notes From a Minor Key: A Memoir of Music, Love and Healing.” We’ve been following Ms. Bailiff’s story from her early days as an aspiring music student through her early successes in the international concert scene to her diagnosis with MS. Today, we discuss the final section of her book; a section she calls “The Soul.” Ms Bailiff has not shied away from telling her readers about her other health issues in the course of her story. To tell of the unthinkable losses she faced in these last chapters is almost too much to read, let alone live. Not to belittle the other issues she lived with and through, reading the penultimate heartbreak of losing a young son can only be th... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1747060 Fri, 29 Aug 2008 23:16:14 +0100 1747060 http://www.medworm.com/index.php?rid=1739553&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fan-important-webcast-on-ms-and-vision%2F I’m back from our annual Big Kid’s Camp and feel rested (a bit) and ready to power through the rest of the year (mostly). Yes, Rusty, the Superman underpants stayed at home (at least in my opinion) for the trip. There are so many things I want us to discuss in upcoming posts. Michelle Obama’s speech this week at the DNC convention where she mentioned her father’s MS is among some of the things I would like to address. Today, however, I want to make sure everyone is registered to attend our monthly HealthTalk MS webcast tomorrow evening. We’ll be hosting a couple of great doctor/researchers in a Webcast called, “Symptoms of MS: Recognizing and Treating Optic Neuritis.” I recently had a small flare of optic neuritis (after years of a mild, mostly unn... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1739553 Thu, 28 Aug 2008 16:26:33 +0100 1739553 http://www.medworm.com/index.php?rid=1726626&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fwhen-i-take-vacation-my-ms-should-too%2F Well, folks I’ve been off at Big Kids Camp this week and weekend. In other words, I’m on vacation! I have to be honest and say that I really need this break, and I’m having a great time. I’ll check in next week to see how everyone here at Life with MS is doing. Now, if I could only convince my MS symptoms to take a break at the same time then I’d really get the break I need. *Sigh* Have a great weekend! 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=1726626 Fri, 22 Aug 2008 23:27:14 +0100 1726626 http://www.medworm.com/index.php?rid=1661056&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fwhat-does-your-dream-ms-clinic-look-like%2F I like to think of the Life with MS blog as an informational resource, a shoulder to cry upon and an outlet for every emotion under the MS sun. In my opinion, all of your comments are a well of experiences which I seem to dip into often. Today I am going back to the well for your opinions. We did this once a couple of years ago with success, so we’ll give it another go. I was contacted last week by someone within the multiple sclerosis community whom I respect very much. (I think I’m going to leave names and cities out of this for now as not all elements of this project have “set”) A new MS Center is in the works, this future “dream center” could very well shake-up the way we think of going to clinic - and they wanted to know what would make for our drea... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1661056 Mon, 28 Jul 2008 23:43:24 +0100 1661056 http://www.medworm.com/index.php?rid=1642881&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-how-sweet-it-isnt%2F Call it “Serendipity”, call it “Irony”, call it what you will…I call it bloody aggravating!!! This week, a blog that I posted over two years ago began getting a little bit of comment traffic. That posting dealt with a temporary (though nowhere near “temporary” enough) loss of my sense of the taste of salt. Two days ago, I woke without the ability to taste any sense of sweetness. As I explained in that 2006 blog, everything we taste is a combination of the basic tastes of Sweet, Salt, Sour and Bitter. Chicken, for instance, doesn’t taste like “chicken”; it tastes like a combination of those four senses and we know that combination as chicken. Caryn (my fiancée) said to me, “It’s not that bad, you don’t like sweets anyway.” Well, that’s like saying to someone, ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1642881 Mon, 21 Jul 2008 22:27:27 +0100 1642881 http://www.medworm.com/index.php?rid=1631709&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhealthy-recipe-grilled-summer-veggies%2F Summer? Check. Veggies? Check. Grill? Check. Put them together and what do you get? Grilled Summer Veggies! Let’s face it folks (with all respect to our friends Down Under) summer is in full swing! The kitchen is too hot to spend even a few minutes sweltering in. We want to spend as little time on meal prep as possible. The garden will soon be yielding far more bounty than one can consume. What to do? I’ve found one of the simplest and most adaptable methods of preparing fresh from the garden vegetables. All it takes is a hot grill, a few summer vegetables and a little bit of salad dressing for flavor and oil. Grilled Summer Vegetables Assortment of Summer Veggies (zucchini, yellow squash, bell peppers, eggplant, sweet onions, asparagus, beans, whatever else you may have) sliced if nee... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1631709 Wed, 16 Jul 2008 21:44:05 +0100 1631709 http://www.medworm.com/index.php?rid=1500420&cid=t_406700_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=1480952&cid=t_406700_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=1449664&cid=t_406700_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_406700_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_406700_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_406700_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_406700_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=1417940&cid=t_406700_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_406700_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_406700_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_406700_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=1382661&cid=t_406700_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=1376925&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-money-matters-taxes%2F Well, it’s April 16th, one day post Tax Day in America. The accountants are resting, the post lines are short again and nobody is ordering steak in the restaurants tonight (really, this is the day when restaurants sell the least steak of the year). We are all breathing a sigh of relief that task is done for another year. It seems like a good time to bring up the topic of deductions; obviously for next year. Of course, the tax laws (or codes, whatever…) change just about every year but there are some pretty consistent deductions out there for us “disabled” people. I’m actually okay with paying taxes. I’m a firm believer that in a society, sometimes those who “have” are responsible to pick-up part of the tab for those who don’t. Only when the lowest of community is raised c... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1376925 Wed, 16 Apr 2008 20:34:30 +0100 1376925 http://www.medworm.com/index.php?rid=1372036&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-ms-walk-and-the-dalai-lama%2F It was a big, bold, wrecking weekend in Seattle. Many of you are likely aware that the 14th Dalai Lama made a trip to the United States this past weekend; it was his first trip to this country since China began a crackdown in his native Tibet. The reason he made a visit to Seattle was to attend a weekend conference of compassion and peace; a part of the Seeds of Compassion summit. The fact that China is stirring such turmoil in the country which he not only serves as spiritual leader, but also as it’s exiled head of state was coincidental to this visit. Also, coincidental to His Holiness’ visit was the fact that the Greater Washington chapter of the National MS Society held eight MS Walk events around the state over this weekend. Some 58,000 attended a public speech by His Holiness on ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1372036 Mon, 14 Apr 2008 22:13:28 +0100 1372036 http://www.medworm.com/index.php?rid=1368009&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fa-new-ms-blogger-joins-healthtalk%2F First, foremost and pen ultimately, I am not leaving you…I’m staying right here in your Monday, Wednesday and Friday routine. Now that that’s taken care of, I have GREAT news. We’ve added a new voice, face and view of multiple sclerosis to your week. Starting next week, you can now read Kim Fabrizio on Tuesdays and Thursdays. Many of you have noted the new blog links in the left margin of Life with MS in the past couple of months. I don’t list many other blogs… yet. I find that most of the MS blogs aren’t what I am looking for in my coping toolbox. Kim’s writings are different. Kim, the writer of the Sunshine and Moonlight blog, is a polished and accomplished writer and brings a couple of new perspectives to us. First, Kim is a woman. No matter how much I try (and yes, ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1368009 Fri, 11 Apr 2008 22:13:45 +0100 1368009 http://www.medworm.com/index.php?rid=1361283&cid=t_406700_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=1356505&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fdoes-stress-make-my-ms-worse%2F If there is one word I hear in conversation about multiple sclerosis more oft than nearly any other, it’s “stress.” “Stress caused my MS,” “I need to avoid stress,” “When I get stressed…” This stress really seems (and I write “seems” for a reason) to have some serious, perceived effects on multiple sclerosis. I will be first in line to state that the weeks and months around my diagnosis would not be considered “low” on a civilian stress scale (let’s face it, police, fire, military and the like face stresses that would make us blush for calling our lives stressful). The thing is, I try to think of things as logically as I possibly can. Saying stress would have a negative impact on my MS just doesn’t make sense to me. Think about this: Pre-multiple scl... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1356505 Mon, 07 Apr 2008 21:24:16 +0100 1356505 http://www.medworm.com/index.php?rid=1346272&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fhas-this-spring-sprung-up-new-issues-hows-your-ms-today%2F The daffodils are blooming, the tulips have begun to open, the willows leaves have begun to burst and my hops are a good foot high; it must be spring. Every month, I take one of our first week’s posts to open the forum to you and your MS. This is also a blog when old friends, and new, leave one another off topic messages, catch-up on each other’s gossip and offer topics for later group discussion. It has become one of my favorites as we are able to keep track of, not only our friends, but also ourselves. My MS has been a little more pronounced of late. My legs are back to that walking through water state and the fatigue is mounting (while sleep is coming less easily because my brain is trying to find other pathways for its impulses). My hip pain has been worse and worse for the past th... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1346272 Wed, 02 Apr 2008 20:50:30 +0100 1346272 http://www.medworm.com/index.php?rid=1325550&cid=t_406700_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=1305027&cid=t_406700_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_406700_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_406700_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_406700_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_406700_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=1251184&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fthe-little-ms-symptoms-that-ironically-make-a-big-impact%2F I can still remember my first typing class in high school. The “Home Row” of keys where your fingers rest – asdf jkl; -were the first we learned. It was a “Typing” class, not “keyboarding” that the kids take now. We learned on manual typewriters with bells and manual tab stops, the whole bit. I took the course for two reasons that were very logical to a sophomore in Wyoming Park High School. 1) Trevis Gleason wanted to be a journalist. My creative writing teacher told me I would, “Never be a journalist!” What kind of a teacher tells a kid that??? And 2.) The girl to boy ratio in Typing I class was some 8:1…nuff said. I’ve been a pretty fair typist ever since, thanks to Coach Darrel Hedgcock who taught the course. Pretty fair was about 70 words per minute for me and mo... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1251184 Fri, 22 Feb 2008 22:34:35 +0100 1251184 http://www.medworm.com/index.php?rid=1234887&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fbefore-the-ms-diagnosis-did-you-know%2F If there is one theme I hear repeatedly when speaking with people living with multiple sclerosis, it’s that most everyone had symptoms prior to diagnosis. For some, it’s just a few short months of something being very wrong and then an answer. For others, however, years of misdiagnoses, ignored symptoms can be frustrating to say the least. My doctors and I attribute my first symptom of MS when I was 22 years of age, but my official diagnosis didn’t come until I was 35. I’m not blaming my doctors; hell, I’m not even sure that I would have wanted to know then. My symptoms were so random and, for the most part, nothing but a curiosity or a nuisance. A little buzzing in my neck from time to time, stiffness and weakness in an arm or hand, LOADS of stumbles and broken glassware were as... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1234887 Fri, 15 Feb 2008 21:21:33 +0100 1234887 http://www.medworm.com/index.php?rid=1213374&cid=t_406700_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=1200893&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fmultiple-sclerosis-loves-company%2F Last week I was in Olympia, Washington to do some group lobbying. There is a bill due out of committee which will exempt durable mobility equipment (scooters, wheelchairs, walkers and the like) from state sales tax. It’s a good bill; a compromise from a much bigger bill that got stuck in committee last year. No one seemed to be against the concept but in a tight budget year, some good bills don’t make it into the budget. I ran into an old friend with multiple sclerosis at the hotel where representatives of three chapters of the National MS Society were gathering to strategize. He told me something that made me very happy – happy for all of us. His news also concerned me a little bit and I want to address it today. Seems he was at one of those MS seminars recently, you know the ones s... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1200893 Mon, 04 Feb 2008 20:08:56 +0100 1200893 http://www.medworm.com/index.php?rid=1196091&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fallison-shadday-joins-the-life-with-ms-crew%2F Happy February, everyone! I know I just posted our monthly book club blog, so it might be odd to speak of the book again, this quickly. I have just secured some very exciting news about this topic and wanted to share. Allison Shadday, the author of our first book, “MS and Your Feelings,” on our book club blog, is going to be joining us for the final discussion we have for her book! Allison has become a good friend (even though she lives a drive, ferry ride and another drive away from me) and has agreed to the idea. We’re calling it, “Author’s Notes.” Here’s how I see the whole thing going down (and I hope that we can make this work with our new author, Dawn Bailiff, as well). Please post comments for Allison on the Chapter 12 book club blog. Over the next few weeks, she’ll ... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1196091 Fri, 01 Feb 2008 23:56:43 +0100 1196091 http://www.medworm.com/index.php?rid=1190101&cid=t_406700_129_f&fid=36038&url=http%3A%2F%2Fblog.healthtalk.com%2Fmultiple-sclerosis%2Flife-with-ms%2Fms-and-your-feelings-book-club-blog-chapter-12%2F Um, what? Sometimes, I swear, I feel like “that” guy from one of the sophomoric college films. Someone will be asking me a question or making a statement that requires further comment from me, and I feel like I’ve been asked to give a report on a book I’ve read under water. “Cognitive issues,” as we’ll call them, range from comprehension to fatigue-induced fog and they are real! This final chapter of Allison Shadday’s book deals with not only the challenges but coping skills for these issues. I say “final chapter” even though there are a couple of short bits after this one. I feel that this is the last of the chapters we need to discuss. Over the past year, we’ve been taking one chapter of the book per month for discussion. Your comments have been numerous on some top... Life with MS blogs http://www.medworm.com/rss/comments.php?id=1190101 Thu, 31 Jan 2008 01:28:40 +0100 1190101