September 11, 2024

Hey - The weather is so beautiful this week in Virginia Beach that I've been out walking on the beach - getting my Vit D via direct sunlight - every damned day. GLORIOUS! 🌞 There are so many studies showing how important getting sunlight is for our health. Everything from our circadian rhythm to our very own Vitamin D production is affected. Did you know Vit D is a hormone that our bodies produce - but not without ultraviolet light??  Your doctor probably put you on Vit D supplements immediately upon diagnosis, right? Wellllll - seems that is just making expensive urine. Oh look, here's a meta-analysis about it now: High-dose vitamin D does not slow MS lesion development. While supplementation it may show an increased Vit D blood level, it's not doing all the good things for us that Vit D manufactured in our own bodies (via UVB rays) will do. So - take advantage of the cooler temps - and get outside. Get movement. Breathe deeply. Notice how all of that makes you feel. Good, right? Lather, rinse, repeat. 😎 Let's take a gander 👀 at what's happening in MS this week:1. Speaking of UVB rays - I have been dropping little nuggets of information about a project I've been involved in for about the last 2 years. It's all about UVB phototherapy and what it can do for MS. I have been working with a company to bring at-home UVB light therapy to our MS community (think: a light box you stand in front of, at home, that reduces inflammation and REALLY HELPS fatigue. Like - REALLY HELPS). The science behind it is fascinating and my experience with this therapy has been life-changing. The CEO of the company (Cytokind) John MacMahon and I did an episode on The MS'ing Link Podcast recently talking about this therapy. Here's where you can listen and learn all about it: UVB Light Therapy for MS2.  Hello more good news: A year of treatment with the experimental BTK inhibitor fenebrutinib was safe and nearly entirely suppressed signs of disease activity, including relapses, disability progression, and brain lesions, in people with relapsing forms of MS, according to new data from the open-label extension part of a Phase 2 trial. Are you seeing the trend that I'm seeing? Lots of research going on. Lots of puzzle pieces coming together. Lots of progress being made. There's never been a better time to have MS (weird statement, maybe, but - true). 1-year fenebrutinib curbs nearly all disease activity in relapsing MS trial3.  Bowel, bladder and sexual dysfunction are all very common issues within the MS community. Yay! 🥳  But all is not lost. There are medications, exercises, and physical therapists that are dedicated to these exact issues. They are called Pelvic Floor Physical Therapists. The first time I heard the term "pelvic floor" was with my bestie Erin - who IS a pelvic floor PT. I asked her if mine also had walls and a ceiling. BTW - the answer was "kind of." But I digress. If you're experiencing these life-altering issues, and haven't considered visiting a PFPT - I highly suggest you do - and, here is an article all about it: Pelvic Floor Physical Therapy for MS: Help for Bladder, Bowel, and Sexual Function   **Said bestie (Erin) and I actually wrote a book together on this subject. It's called "Bowel and Bladder Issues in Multiple Sclerosis by Two Pee Brains with Potty Mouths Talking Shit About MS".  She wrote the smart-thinky parts and I wrote the smart-assy parts (true to form). If you're interested in getting it for yourself, click on the book graphic below:4.  In a full-circle moment, I came across this clinical trial evaluating whether combining a cognitive rehabilitation program with a virtual reality (VR)-based aerobic exercise regimen will improve learning and memory in people with MS and motor disability. Full-circle because I bought a Meta Quest VR headset in an effort to get more movement into my life - and have fun doing it! It is fun - and immersive and transcending. Huh? Well - it's so immersive that I can sort of "escape my reality" for a time - with a different "virtual reality." Here's a link to this trial with some interesting background on why they think this could make such a difference: Trial tests cognitive rehab with VR-based exercise to boost memory  After reading this trial - I was reminded that I had written an article about my experience with VR! Here's a link to that article too: Can Virtual Reality Help Life with MS?5.  Having antibodies against the rubella virus is associated with an increased risk of developing MS in unvaccinated people, a Swedish study suggests. I'm no scientist but - we learned that having had Epstein Bar Virus (EBV) is a leading cause (they actually used that word) of MS. Now, Rubella. Sounds like certain infections trigger MS. 🤯 Look at me being all sciency and stuff! Perhaps I'll start mathing soon! Rubella infection may increase MS risk in unvaccinated people6.  Nutrition is important for everyone. Getting good nutrition can certainly impact your MS. The foods to avoid are just as important to understand as the food that is good for us to eat. Here are 7 Foods to Avoid When You Have Multiple Sclerosis

✨Inspirational FUMS'er✨

Para cyclist (and MS badass (I'm paraphrasing)) Emily Petricola defends title as Australians sparkle in Paris velodrome

A joyous Emily Petricola overcame a flare-up of MS to smash her own world record and successfully retain her 3,000m individual pursuit Paralympic gold medal!! 

“It’s been a really tough last eight weeks having an MS flare so this was no guarantee for me,” Petricola said. “This one has caused a lot of muscle spasm through my back, my left leg and then into my neck... my abdominal area - the whole thing is gone.

“We’ve had to manage my load just to make sure my leg turns over on the bike and I just kept telling myself that my body is trained for this, to go on autopilot and get it done. I feel so incredibly proud... I sang (the anthem) completely out of tune but I refuse to apologise for that.”Want to read more about Emily's amazing feat? Here you go: Emily Petricola Says FU to MS (I may have change the title a bit) 

Kathy's Fun Finds and RecommendationsDisclosure: This post may contain affiliate links, meaning I get a commission if you decide to purchase through my links, AT NO ADDITIONAL COST TO YOU. When I walk the beach now - especially in the mornings - it's chilly. I need a little sompin' sompin' to keep the chill at bay (Chesapeake Bay 😉).  This lightweight windbreaker does the job AND allows me to share how I feel about this damned disease at the same time! Want one??  Here's where to go: FUMS Shop

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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