[Re-sent] September 18, 2024

Hey - I had my 6-month visit with my neurologist this week and GOOD NEWS: the weakness on my left side (caused by a new lesion and 2 old lesions that had recently grown) is gone. I am even and balanced (at least in terms of bilateral strength! 😉) How did that happen, you ask!?! I dialed up my movement. I joined a rec center near my home and started working out with weights twice a week. Then I tried an aqua exercise class and I AM IN LOVE! 🥰  Seriously - buoyancy is the bomb! All those inflamed nerves, joints and muscles relax and "float" and allow me to move much more freely and without pain. AND IT'S FUN!!  We work hard - I really feel the workout afterward - but it's just much easier to get the reps in and MOVE in the water than on land. Maybe I'm actually a mermaid!?!??🧜🏻‍♀️  You should check to see if there is a municipal recreation center near you. The price can't be beat and it's a lot more "relaxed" than a gym. Gyms have gym rats and body builders and people who actually care what they look like for a workout. My Rec Center is only $112 A YEAR!!!! and it's a lovely, relaxed atmosphere where no one is trying to impress anyone. I highly recommend. Remember - if we quit moving - WE QUIT MOVING. Get moving!!  💪🏻OK - climbing off my soapbox now. 🧗🏻‍♀️ Here's this week's top 6 topics in MS:1.  Happy ECTRIMS Week! Don't know what that is??  Well - ECTRIMS = European Committee for Treatment and Research in Multiple Sclerosis. They meet each year and the information, studies, and collabs that come out of it are always exciting. I look forward to it and ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis) every year. This year - right now - 9000 researchers, clinicians and healthcare providers are meeting in Copenhagen, Denmark to collaborate on the next life-changing research and treatment options for people with MS and related diseases! I'll be sure to post some of the highlights. But - if you're interested in learning more - here you go: ECTRIMS 20242.  Eighty percent of people who have MS experience problems with walking within 10 to 15 years of the onset of the disease, according to the National Multiple Sclerosis Society (NMSS). Furthermore, common symptoms of MS, including weakness, poor balance, spasticity, and fatigue, can increase your risk for falls. Don't give up hope - there's a lot you can do to stay on your feet. 🚶🏼 8 Steps to Better Walking With MS 3.  Hello to my Ocrevus FUMS'ers. I know you've been happy - for the most part - with this wonder drug infusion. But some people had a difficult time accessing it due to a lack of infusion sites, and then there was always the L-O-N-G infusion time . . . Well - check this out: the U.S. Food and Drug Administration (FDA) has approved Ocrevus Zunovo (ocrelizumab and hyaluronidase-ocsq), a subcutaneous, or under-the-skin, formulation of Ocrevus (ocrelizumab), for treating adults with MS. *Actually -  Ocrevus and Ocrevus Zunovo are the only two therapies in the U.S. approved to treat both relapsing MS and PPMS. AND - it takes just 10 minutes to administer. AND it can be done in your doctor's office. Oh - do you hear that?? It's the other MS infusion meds running to see how they can catch up to this HUGE advancement in MS treatment. 🏃‍♀️

   Did you know that FUMS has a YouTube channel??  YEP - with 181 videos and growing - there's lots to see and learn over there. I would REALLY appreciate it if you would hop over there and subscribe to the channel - how about right now??. I just need 1000 subscribers and YouTube will monetize my channel!!  I'd be so grateful. Here's where to go: FUMS on YouTubeThank you

4.  Steroids can help with an MS relapse, but they come with the risk of side effects. When I was dx'ed with Osteoporosis, the Rheumatologist suspected steroid use for my MS flares might be the culprit. WHAT?!?! I had no idea that was a potential issue. I may have made different choices had I known. I want YOU to be educated. Here's what to watch for: 6 Side Effects of MS Steroid Treatment5.  While I was writing this edition of the 6-Pack - I got an alert of something REALLY EXCITING coming out of ECTRIMS (🔥hot off the presses today!): A study has uncovered novel ancestry-specific genetic variants linked to MS, offering new insights that could reshape treatment approaches for diverse populations affected by the disease. Take that in for a second. This could mean population-specific treatments. Hello truly personalized medicine. Read all about it right here: Ancestry-specific genetic variants linked to multiple sclerosis risk6.  And to tie up and put a bow on this week's FUMS 6-Pack - here is an interesting and uplifting look at a little history and a lot of prognosticating on MS: A Cure for Multiple Sclerosis? Scientists Say Within Our Lifetime.  "People diagnosed today can live a long life free of disability, as UCSF research ushers in a golden age of MS care" 🥳

💰PAID MS-Condition Specific Gigs

1) If you're interested in the following opportunity, you must FIRST enroll to qualify for this and any future paid gigs: FUMS Partner GigsMultiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont, UnitedStates25-minute online survey, compensation is $50

💰💰💰

2) If you qualify and complete the 35-minute survey, you will get a $70 e-gift card!Since they are looking for specific patients, they will first ask you a few questions to determine if you qualify. You may be eligible to earn the e-gift card if you:

• Are 18 years of age or older

• Are a US resident

• Have been diagnosed with RRMS or SPMS

Please note this survey link may be used only once, and it cannot be forwarded to others. Once starting the survey, you cannot save and return to it later, so please allocate enough time to complete in one sitting.  Click to see if you qualify: MS Gig

  Mark your calendars: Amazon Prime Days are coming up: October 8-9. FUMS has curated an Amazon Store with products to help people with MS live their best lives. Check it out: FUMS Amazon Store

That's all folks. Let me know if you have any questions or if I can help you in any way. Otherwise, just keep saying FUMS!! 🧡Cheers -- KathyKathy Reagan YoungFounderFUMS

Sometimes it helps the stress, just to say F-U-M-SPLEASE share this newsletter 👇🏻

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