[Re-sent] June 12, 2024

Hey - I'm baaaaack! Did you miss me?? Or more likely, did you miss the 6-Pack?? I was on a lovely family vacation - to Italy. 🇮🇹  It was stunningly beautiful. And the food and drinks were fantastic and plentiful - and I'm fluffy now! I started back on my intermittent fasting yesterday and started back at the gym today.😉  One thing I will say, however, is that Italy - or at least the areas my family and I were in (Sorrento/Amalfi coasts, Capri, Florence, Rome, and Bologna) were not accessible. There are so. many. steps. Many/most of the streets are cobblestone so - hard to walk even if you don't have any issues. The little shops and restaurants are in VERY OLD buildings and that typically means more steps. And very narrow hallways. And TEENY TINY bathrooms. We had a wonderful time and my MS behaved for MOST of the trip. The last couple of days - and the return trip - my left leg was in horrible spasms. But I'll take it. The majority of the trip I felt not just fine - but good! We had originally scheduled the trip for July but learned it is unbearably hot 🥵 there then. Well - I HAVE MS so - that wouldn't do. We had perfect weather - low 70-s with a light breeze the entire time. Perfetto! 🇮🇹Me and the fam (Maggie Mae, Reagan & T.J.) atFaraglioni, Capri, Italy - the Love Rocks 😉OK - now that I've established I'm one lucky broad - let's get to the good stuff: 1.  UGH - my head is killing me. Do you say that? Often? There may be a link between those headaches you're experiencing and MS.  A large proportion of people with MS experience headaches and treatment with interferon-based therapies seems to increase the risk of worsening headaches or developing new ones, a study found. In contrast, the CD20 antibody rituximab that’s used off-label in MS significantly reduced the risk.  Headaches and MS linked, and therapies may affect them2.  Are you a political activist? Ever considered it? Now's the time. Not only is there a lot of work to be done on things like accessibility, drug costs, insurance coverage, etc., but environmental issues impact us as well.  Climate Change Fuelling Surge in Multiple Sclerosis Cases, Spurs Demand for Advanced Treatments3.  MS can zap more than your energy - it can zap your hydration too. So can the meds we take. Bowel and bladder issues inherent to MS are helped with proper hydration. When I'm well-hydrated - I feel better. I sleep better.  My fatigue and spasticity are better.  If you haven't noticed that, maybe you're dehydrated!!  Try adding in more water and see if you feel any difference. I sure do. In fact, I've gone so far as to find water that includes naturally occurring electrolytes so I retain more of that fluid rather than that constant drink and pee and drink and pee dance we do. Here's a link to my favorite coconut water (Vita Coco) and an article if you need more convincing: The Importance of Hydration in Multiple Sclerosis 4.  FATIGUE. It's my least favorite F word. And one I'm very well acquainted with. Bet you are too.  A large clinical trial to test online programs for treating fatigue in people with MS will launch in the U.S. in the coming months. The study — the largest of its kind — will be funded by a nearly $4.5-million grant from the U.S. Department of Defense via the MS Research Program and spearheaded by iConquer MS, a patient-powered research initiative from the Accelerated Cure Project (ACP), in collaboration with the U.S. Department of Veterans Affairs (VA). Recruitment is expected to open this summer within the iConquerMS network and in the fall for five participating VA sites. I will certainly post opportunities to get involved when they are released. **Shoutout to friend, fellow MS advocate, lead patient representative for iConquerMS, AND subscriber of this here newsletter, Laura Kolaczkowski, who is quoted in the article. Laura - let me know how FUMS can support this important study!  Large US trial to test online programs for treating MS fatigue5. It was so exciting to learn that EBV (Epstein Barr Virus) had been identified as one of the strongest risk factors for developing MS. BUT - a majority of people have been infected with EBV by the time they reach adulthood - so why are we the lucky ones whose latent EBV reactivates and we go on to get MS??  Well - here's a study looking at that - and at potential treatments as well. Exciting stuff, folks: EBV dormant in MS reactivates with disease activity6.  Do YOU live in an MS desert? What's that, you ask? Well - that's living in an underserved MS medical location as defined here:  "the basis of neurologists was < 2.32/100,000 individuals in any given county. Drive time thresholds varied, but the definition of an MS desert is defined as more than 60 minutes from an urban center."  I hate that medical care - for anyone - is a challenge. But for my community? That breaks my heart. Come on telemedicine, apps, AI - let's get our shit together and solve this!!  Large Numbers of Patients With MS Stranded in 'Care Deserts'

______________________Disclosure: This post may contain affiliate links, meaning I get a commission if you decide to make a purchase through my links, AT NO additional COST TO YOU. I would NEVER recommend something that I didn't believe in 100%. 

KATHY RECOMMENDS:You know how you try soooo damned hard to pay attention - in a meeting, on the phone, in your doctor's appointments? But yet - you forget things. You try to fill in the blanks - but, especially if it's a medical appointment, relying on your memory could be dangerous. You may take notes - and not be able to fully participate in the conversation. No bueno. I've dealt with this for years. But I found a great solution. It's called Plaud Note - and it's a voice recorder that transcribes and summarizes those recordings for you!!!!  BOOM💥  Mic drop 🎤🫳🏻  It has helped me so much it's crazy. You can record in-person conversations or over the phone. On the computer - whatever. Then - the magic happens.🪄 You get the transcription, recording, AND summary of your conversation with tasks to be done, etc. It's fantastic. I highly recommend it! Now I can concentrate on talking to my doctor rather than trying to take notes. And it's all digitized so I can keep all of my appts notes together on my computer to review in the future. Or share with another doctor!?!?  Go get it! Here's where to learn more and buy yours: Plaud NoteThat'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

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