Vaccine Advice, Resolutions, MS DMT News
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Welcome to the newest edition of The Hunker Games. Dave and his wife Laura of ActiveMSers are hunkering down in isolation for the duration of the coronavirus pandemicâthese are their stories (cue the L&O dong-dong) ... along with helpful advice, necessary levity, and, most crucially, hope.
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Greetings, you shouldâve received our 25-page exercise guide the other day along with a link to my short professional film about exercise and MS. I warned you that youâd be getting a lot of Dave love in the coming year! So a bit more about those efforts. The PDF guide was done by my sister Kathryn, the architect behind my website, forum and newsletter redesigns. Sheâs kinda talented, especially considering she is also managing three kids six and under (including a newborn!), running a race timing business (Bighorn Racing) with her husband, and juggling perfectly timed visits from Grandpa that inevitably occur while she is trying to prepare dinner or nurse. As for the 3-minute video, which was produced by Bustle and is on Inverse (both apparently hip, ergo, they are out of my typical orbit), that took serious lifting from several teams. I wrote the entire script with full creative rein, Laura did the filming and lighting, and a remote team from NYC did the live directing over cellphone, while another team did the editing, graphics, and postproduction. The shoot took all day, the fine tuning an extra month, but I think the end result was totally worth it to help educate othersâ235,000 and counting!âabout the importance of exercise when you have MS. Alas the humorous kale smoothie and Wookiee bits got cut during editing, and they toned down some of my humor, but nevertheless itâs still all Dave. Plus you get to tour my accessible house, including my bedroom đź. I was going to hold off on the next edition of The Hunker Games, but thereâs enough pressing news that we gotta bust another out, and stat!
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// ALERT: Covid-19 Vaccine Advice
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Medical experts convened by the National MS Society agree the COVID-19 vaccines are safe and should be administered to people with MS. âBased on data from previous studies of other vaccines and DMTs, getting the COVID-19 vaccine while on any DMT is safe. Some DMTs may make the vaccine less effective but it will still provide some protection. For those taking Kesimpta, Lemtrada, Mavenclad, Ocrevus, or Rituxanâyou may need to coordinate the timing of your vaccine with the timing of your DMT dose. Work with your MS healthcare provider to determine the best schedule for you.â The MS Society of Canada, the UK MS Society, as well as the MS International Federation, have updated their recommendations. Bottom line: get the vaccine when it's available to you.
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TIP: Keeping Resolutions. For most people, New Yearâs resolutions go the way of the fleeting fame of one-hit wonders, like Mambo No. 5 and that breakup song from Gotye with that cool video. Resolutions start out with the best of intentions and then after a few weeks they crumble into fine dust and skitter away in chilly late January winds. There has to be a better way. For people with multiple sclerosis, there is.... BLOG
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// NOTABLE MS NEWS: Long-Term DMT Effectiveness
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Those disease modifying therapies you have been faithfully taking in the hopes they work? New research not only has confirmed they work, but that they can be overwhelmingly effective. One major study concluded that âcontinued treatment with MS immunotherapies reduces disability accrual by 19%-44%, the risk of need of a walking aid by 67%, and the frequency of relapses by 40-41% over 15 years.â Another study found âthe risk of disability decreased with increasing duration of exposure to disease-modifying treatment (DMT)â and that âlong-term use of treatments in RRMS has a stronger beneficial cumulative impact than only early uses and delays the occurrence of moderate disability and conversion to SPMS.â And then this long-term study of HSCT dropped! Itâs a gamechanger.
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// RUN, WALK, ROLL OR RIDE: Join Our Virtual Race Team!
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ActiveMSers has partnered with Bighorn Racing to build a virtual race team of optimistic misfits for Americaâs Shamrock Run this March. Hereâs how it works. Select your distance during registration (1 mile, 5k, 8k, or half marathon distance; or a 10 or 25 mile ride). Theyâll ship the goodie bag with a Shamrock Run jacket, hat, medal and personalized bib directly to your door. You then compete virtually, on the honor system, any day during March, logging your results. We are also raising funds for the Accelerated Cure Project for MS (I volunteer for them), so donât forget to donate! Register here ($40) by March 1 to ensure your swag bag arrives on time. Join me!
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Before I let you go, Iâve got another head-smacker of a story. But of course! If you recall, to celebrate the end of 2020, Laura and I popped a friendâs bottle of extremely expensive champagne⊠that we promptly spilled, forgetting briefly that it was still 2020. Karma. Well, in 2021 we nearly put that incident to shame. We were cleaning out our liquor cabinet and thought we could have a little fun with some close friends. But how to get them to drink up bizarre leftover liquids? Like the Vietnamese vodka we had purchased in 2004 during our trip, which was such an âacquired tasteâ that the bottle was still mostly full, languishing for nearly two decades? By force, obviously. Enter rotgut roulette, a dice game I invented to add entertainment and a sense of fear to the act of consuming alcohol. Roll correctly, and you might get some elegant libation. But the wrong roll could get you cheap mescal, complete with the worm. Then there was this small, ominous bottle of 106-proof Chinese firewater, that had been given to us by a dear friend years ago, who himself had been gifted the bottle back in 2002.
Well, he never got around to drinking it, and when he was moving to Australia, he pawned it off on us. We werenât about to drink the scary stuff either. But now? We had suckers! To make sure it hadnât been recalled for poisoning imbibers, I googled Kweichow Moutai. Uhhhhh. A new bottle, just 375ml, was going for $350âif you could find one. A bottle from 2002? Those are listed on auction sites... Sothebyâs, Christieâs. In fact, the day before the party, CNN ran a story on how rare vintages can sell for prices up to $40,000! So I wrote my friend in Australia. And when I say friend, we are as tight of mates as two buds can beâI was his best man ⊠twice (he married an Australian, so weddings were had on two continents). He also is dealing with bladder cancer and just discovered he needs reconstructive leg surgery. So yeeeah, I couldnât drink a thousand dollar bottle of booze without him. We made a pact: neither of us can die without tasting this darn thing together, which has been described as drinking liquid razor blades. Holy Schick! But still, I canât wait. We just need this pandemic thingy to end! It will. Be active, stay fit, and keep exploring!
ï»ż
Sincerely,
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Dave Bexfield
p.s. I have just started testing the Hyperice Hypervolt massage gun. Sounds scary, but the massager could be just the ticket to soothe spastic MS muscles. We'll see!
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be active - stay fit - keep exploring
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