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For those who do not get the newsletter or have been on the fence because it requires giving up an e-mail address to a stranger named Dave who has an attitude, I figured I'd post one here so you can see what it is all about. Unfortunately all of the links have been disabled (boo) and I can't post the password to the Members Only forum (sorry). But you get the picture. I've been publishing it for over five years and I work hard to make it a fun, educational read. If you want to sign up for future ones, head over to www.activemsers.org. And if you already get it, tell your MS friends (and docs and nurses and MS Society buds, etc.) to get it, too. - Dave
ActiveMSers' June 2012 Newsletter
Bonjour my friends, I have returned from my Paris sojourn. Fear not, while I have many photos with which to bore family members, I kindly shall spare you. There was one moment, though, that I have to share. As the last ounces of sunlight spilled over a magical evening in Provence, I turned to my wife of nearly 20 years. "Hold this," I said, offering up a forearm crutch. She was bemused; I was not going to get very far. And then I took Laura's free hand, interlaced our fingers, and began leading her through the postcard vineyard of our French inn. For the first time in three years we were walking together, hand-in-hand. Was it pretty? No so much. Was it romantic? Devastatingly so. The world is still full of surprises. And, coincidentally, so is our latest newsletter.
Travel tips updated after France, airport scare
Out of the blue sky, one of the honchos at United Airlines wrote me with applause for our extensive checklist of travel tips and tricks. Yay for ActiveMSers! Uh... she also wrote that the reason she found the site is because someone in Phoenix decided to stroll through the full body scanner wearing a cooling vest without informing security. "You can imagine what that looked like to the X-ray person." Indeed. Click here to read my newest additions (and a new "AAA" warning on another one of my tips that she kindly pointed out) so you can ensure your next holiday is a "towering" success, pardon the pun.
BLOG: Les Toilettes--The French Folly, Murphy's Law
Traveling and multiple sclerosis go together like chocolate syrup and sardines. So those of us with this disease appreciate the little things that make globetrotting a little easier, like easy-to-access public toilets. Which, I discovered on a recent escape to France, virtually do not exist in a country that mandates diuretics--coffee, wine, champagne--at most meals. So I've come up with a handy set of rules to make it easier to navigate the bladder wars and dampen (no pun intended) your panic quotient when you've gotta go. I also recently blogged about what happens when Murphy's Law shows up while grocery shopping (on the eve of a 10-person dinner party no less). There have been some encores, too: the revolutionary weight-loss just diagnosed diet plan, why you may know more about MS than your neuro, and how I imitated Humpty Dumpty.
The latest studies on exercise and MS
What is the best intervention for improving quality of life in MSers? According to one study, the smallest effect was observed for self-management and complementary and alternative medicine (CAM), but the surprise was this, which even beat exercise and medication. Another study looked at the Wii Fit for MS. Did it help? The answer is a bit tippy. Although the Wii might not improve stability substantially, another physical therapy trick did seem to help with gait while this technique helped with balance (and fatigue, too). Finally, Denmark researchers looked at 16 prior MS/weightlifting studies and discovered, shocker, that weightlifting is good for people with MS.
Research Recaps: DMD revelation, Vitamin D revisited, fish oil flops, BG-12 & alemtuzumab, and S-E-X
Italian researchers analyzed data from 1,178 patients with a relapsing form of multiple sclerosis at onset and at least 10 years of disease duration, treated (59%) or untreated with DMDs. They found "the risk of secondary progression was significantly lower in patients treated with DMDs" and concluded that "DMDs significantly reduce the risk of multiple sclerosis progression." In other DMD news, while an earlier study showed Vitamin D alone had little effect on MS, combine it with interferon therapy and BAM--it makes a noticeable difference in MRI activity (above the DMD alone). And looking at another popular supplement, investigators discovered that omega-3 fatty acids (aka fish oil) flopped when it came to influencing MS, but researchers at least found that "as expected, the MRI disease activity was significantly reduced when interferon beta-1a was introduced." Meanwhile, two new drugs, alemtuzumab (infusion) and BG-12 (oral) continue to impress in studies. And finally, it was confirmed that MS causes issues in the sack (news flash!) on everything from arousal to satisfaction.
TIP: Get back on, out, and up
With multiple sclerosis, as in life, there are many obstacles that can trip up the best of intentions--your planned diet, your exercise routine, your medication commitment. Wagons, ruts and shoelaces conspire. If you fall off, get back on. If you fall in, climb back out. If you fall down, get back up.
GEAR REVIEW: SideStix forearm crutches excel
When my multiple sclerosis got ornery in late 2009, I was forced to start using a walker. That bummed me out... and pissed me off. But then my physical therapist sister pulled out a 20-year old pair of beater forearm crutches that she had found stashed in the basement of her hospital. "Try these," she said. Talk about a Godsend. But after using those beaters for two years and then testing a pair of SideStix for the past few months, I've learned that there is a vast gulf between hand-me-downs and high-end. Does SideStix make the best forearm crutches on the market? For the outdoor enthusiast, there's no question. They are my top recommendation for the disabled athlete, adventurer or explorer. Read why in our detailed forearm crutch review and buyer's guide. Members also get 10% off with the coupon code: "ActiveMSer". Look for other coupon codes, including those for cooling vests, in our Members Only forum.
On the forums, battle plans are being drawn
LivWell is working on a battle plan to combat frustrating MS fog (as is PhD Dave), Jill is focused on triathlon training, Kevan is giving wheelchair racing a go, "Mike on a Bike" is excited to have found a new home at ActiveMSers, while dancer Rumbalsa tangoed her way over just the other day. Gear finds include a camping tent designed for wheelchairs, an over-the-top $15,000 "mobility device" and the ongoing testing of two new cooling vests/shirts. Join in the conversation or just pop in to say howdy.
REVIEW: Yoga for MS deconstructed
Yoga has long been touted for both its physical and mental benefits for those with multiple sclerosis. But yoga also conjures fear in us MSers who've never done the ancient Indian discipline. After all, there are lots of strange poses--downward facing dog, upward facing dog, slightly menacing sideways-glancing dog--not to mention strange breathing practices and odd "ohm" new-agey noises. With the help of Sarah Humphries, a yoga instructor who was diagnosed with MS in the early 1990s, ActiveMSers breaks down the mystery of yoga and explains why it is so helpful in MS.
Official newsletter sponsor: triathlete Kelly Williamson
This newsletter and those for the next year and half are being sponsored by Kelly--that's how much she believes in our efforts. Follow her pro season (four first place finishes so far, booyah!) all the way to the legendary Kona ironman and when possible, return the favor and support her sponsors, which include Zoot, PowerBar, Quintana Roo, and many more. Also, don't forget to submit your inspiring training story to her for her blog to support her MS fundraising efforts. Thanks again, Kelly!
Before I wrap up this latest edition, for those wondering, my recent Houston visits for the HALT-MS clinical trial went swimmingly: no new or enhancing lesions for the second consecutive year. I also did better on virtually all of my tests, including that darn oral math quiz. This progress is good for all of us and is a step toward more answers concerning this mystifying disease. Let's stay in touch and I hope to see you soon at the website, on the blog, and on our forums. Be active, stay fit and keep exploring!
ActiveMSers' June 2012 Newsletter
Bonjour my friends, I have returned from my Paris sojourn. Fear not, while I have many photos with which to bore family members, I kindly shall spare you. There was one moment, though, that I have to share. As the last ounces of sunlight spilled over a magical evening in Provence, I turned to my wife of nearly 20 years. "Hold this," I said, offering up a forearm crutch. She was bemused; I was not going to get very far. And then I took Laura's free hand, interlaced our fingers, and began leading her through the postcard vineyard of our French inn. For the first time in three years we were walking together, hand-in-hand. Was it pretty? No so much. Was it romantic? Devastatingly so. The world is still full of surprises. And, coincidentally, so is our latest newsletter.
Travel tips updated after France, airport scare
Out of the blue sky, one of the honchos at United Airlines wrote me with applause for our extensive checklist of travel tips and tricks. Yay for ActiveMSers! Uh... she also wrote that the reason she found the site is because someone in Phoenix decided to stroll through the full body scanner wearing a cooling vest without informing security. "You can imagine what that looked like to the X-ray person." Indeed. Click here to read my newest additions (and a new "AAA" warning on another one of my tips that she kindly pointed out) so you can ensure your next holiday is a "towering" success, pardon the pun.
BLOG: Les Toilettes--The French Folly, Murphy's Law
Traveling and multiple sclerosis go together like chocolate syrup and sardines. So those of us with this disease appreciate the little things that make globetrotting a little easier, like easy-to-access public toilets. Which, I discovered on a recent escape to France, virtually do not exist in a country that mandates diuretics--coffee, wine, champagne--at most meals. So I've come up with a handy set of rules to make it easier to navigate the bladder wars and dampen (no pun intended) your panic quotient when you've gotta go. I also recently blogged about what happens when Murphy's Law shows up while grocery shopping (on the eve of a 10-person dinner party no less). There have been some encores, too: the revolutionary weight-loss just diagnosed diet plan, why you may know more about MS than your neuro, and how I imitated Humpty Dumpty.
The latest studies on exercise and MS
What is the best intervention for improving quality of life in MSers? According to one study, the smallest effect was observed for self-management and complementary and alternative medicine (CAM), but the surprise was this, which even beat exercise and medication. Another study looked at the Wii Fit for MS. Did it help? The answer is a bit tippy. Although the Wii might not improve stability substantially, another physical therapy trick did seem to help with gait while this technique helped with balance (and fatigue, too). Finally, Denmark researchers looked at 16 prior MS/weightlifting studies and discovered, shocker, that weightlifting is good for people with MS.
Research Recaps: DMD revelation, Vitamin D revisited, fish oil flops, BG-12 & alemtuzumab, and S-E-X
Italian researchers analyzed data from 1,178 patients with a relapsing form of multiple sclerosis at onset and at least 10 years of disease duration, treated (59%) or untreated with DMDs. They found "the risk of secondary progression was significantly lower in patients treated with DMDs" and concluded that "DMDs significantly reduce the risk of multiple sclerosis progression." In other DMD news, while an earlier study showed Vitamin D alone had little effect on MS, combine it with interferon therapy and BAM--it makes a noticeable difference in MRI activity (above the DMD alone). And looking at another popular supplement, investigators discovered that omega-3 fatty acids (aka fish oil) flopped when it came to influencing MS, but researchers at least found that "as expected, the MRI disease activity was significantly reduced when interferon beta-1a was introduced." Meanwhile, two new drugs, alemtuzumab (infusion) and BG-12 (oral) continue to impress in studies. And finally, it was confirmed that MS causes issues in the sack (news flash!) on everything from arousal to satisfaction.
TIP: Get back on, out, and up
With multiple sclerosis, as in life, there are many obstacles that can trip up the best of intentions--your planned diet, your exercise routine, your medication commitment. Wagons, ruts and shoelaces conspire. If you fall off, get back on. If you fall in, climb back out. If you fall down, get back up.
GEAR REVIEW: SideStix forearm crutches excel
When my multiple sclerosis got ornery in late 2009, I was forced to start using a walker. That bummed me out... and pissed me off. But then my physical therapist sister pulled out a 20-year old pair of beater forearm crutches that she had found stashed in the basement of her hospital. "Try these," she said. Talk about a Godsend. But after using those beaters for two years and then testing a pair of SideStix for the past few months, I've learned that there is a vast gulf between hand-me-downs and high-end. Does SideStix make the best forearm crutches on the market? For the outdoor enthusiast, there's no question. They are my top recommendation for the disabled athlete, adventurer or explorer. Read why in our detailed forearm crutch review and buyer's guide. Members also get 10% off with the coupon code: "ActiveMSer". Look for other coupon codes, including those for cooling vests, in our Members Only forum.
On the forums, battle plans are being drawn
LivWell is working on a battle plan to combat frustrating MS fog (as is PhD Dave), Jill is focused on triathlon training, Kevan is giving wheelchair racing a go, "Mike on a Bike" is excited to have found a new home at ActiveMSers, while dancer Rumbalsa tangoed her way over just the other day. Gear finds include a camping tent designed for wheelchairs, an over-the-top $15,000 "mobility device" and the ongoing testing of two new cooling vests/shirts. Join in the conversation or just pop in to say howdy.
REVIEW: Yoga for MS deconstructed
Yoga has long been touted for both its physical and mental benefits for those with multiple sclerosis. But yoga also conjures fear in us MSers who've never done the ancient Indian discipline. After all, there are lots of strange poses--downward facing dog, upward facing dog, slightly menacing sideways-glancing dog--not to mention strange breathing practices and odd "ohm" new-agey noises. With the help of Sarah Humphries, a yoga instructor who was diagnosed with MS in the early 1990s, ActiveMSers breaks down the mystery of yoga and explains why it is so helpful in MS.
Official newsletter sponsor: triathlete Kelly Williamson
This newsletter and those for the next year and half are being sponsored by Kelly--that's how much she believes in our efforts. Follow her pro season (four first place finishes so far, booyah!) all the way to the legendary Kona ironman and when possible, return the favor and support her sponsors, which include Zoot, PowerBar, Quintana Roo, and many more. Also, don't forget to submit your inspiring training story to her for her blog to support her MS fundraising efforts. Thanks again, Kelly!
Before I wrap up this latest edition, for those wondering, my recent Houston visits for the HALT-MS clinical trial went swimmingly: no new or enhancing lesions for the second consecutive year. I also did better on virtually all of my tests, including that darn oral math quiz. This progress is good for all of us and is a step toward more answers concerning this mystifying disease. Let's stay in touch and I hope to see you soon at the website, on the blog, and on our forums. Be active, stay fit and keep exploring!