[Re-sent] August 14, 2024

Hey - So - I used the word "disabled" to describe myself for the first time this past week. Strange that it took me this long. It is a study of the power of denial. BTW - it wasn't conscious. I didn't MEAN to downplay how MS was affecting me - I just sort of "didn't notice" or ignored it and practiced the power of positive thinking. OR - as I've come to understand - I do this sort of "showtime" thing where I'm "up" and "happy & peppy & bursting with love"  in front of others and then crash when I'm alone. And that has served me well for a very long time - diagnosed 16 years, first symptoms 35+ years ago. But I was in a work situation where my s-l-o-w processing speed, and inability to "switch" showed itself in a rather grand fashion and I just shut down. It was truly embarrassing. I took a long, hard look at the incomplete picture of MS that I was portraying and realized what a disservice I was doing to myself and in how I represent this community. This has really "shook" me. I'm processing - and if you know me at all you know what that means: Blue Belle Rocky Road Ice Cream. 🍨 That is THE BEST processing facilitator available. I spoke with a dear friend and fellow MS advocate - Jackie Zimmerman about this and we want to do some sort of discussion about this topic - perhaps a live stream on a social, a video chat on YouTube - something. I'll keep you updated. Should be a pretty raw, vulnerable discussion that may well help others dealing with the same thing.😉Enough of that. Let's get to the good stuff:1.  We've known for a long time now that the gut impacts every other aspect of our health - so it wasn't a stretch to assume that our gut's microbiome plays a role in our MS. And - we were right! 🥳  "People with multiple sclerosis show subtle alterations in gut bacteria that seem to be consistent across populations in the U.S. and Asia, a new analysis of previously published studies found."  MS and gut microbiome pattern similar across US, Asia: Analysis  2.  I am so happy to see more and more research on behalf of our progressive MS family members. It's about damn time (nod to Lizzo).  "The researchers will evaluate the use of IDP-023 along with Ocrevus (ocrelizumab), the only disease-modifying therapy approved for primary progressive MS, one of the progressive types of the disease. Using a translational program developed by both universities, researchers will examine IDP-023’s biological effects in people with progressive forms of MS."  Indapta plans trial of cell-based therapy IDP-023 in progressive MS3.  Where are my MS'y folks that use Acthar Gel instead of corticosteroids for an acute relapse or worsening symptoms? Interesting - I didn't know about this option. Hmmmm. Anywho  - apparently it was a pain in the ass (pardon the pun) because it involved a multi-dose vial and syringe, meaning - you had to be super careful to draw up the right dose, etc. WELL - happy days are here again! Now they are offering a pre-filled device available in two dosages, aimed at simplifying treatment. Give me simple all day long! 

Acthar Gel self-injection option available in US4.  I LOVE outside-of-the-box thinking. And when it comes to MS - we need researchers who are willing to look outside the box, inside the box, around the box and beyond the box. Here's some now: Multiple sclerosis research grants celebrate outside-the-box ideas5.  I had to sneak this one in here. It's the story of a landlord who discriminated against a woman BECAUSE of her MS!! 😳  It's an interesting, outlandish story - with a twist at the end: Landlord tries to block tenant from moving in 5 days before lease starts6.  Shut the front door. Can you say potential myelin repair?? 🥳 This headline got my attention: New treatment may stop and potentially reverse some nerve damage in MS

Kathy's Fun Finds and Recommendations: 

Check out this newly opened ADA-compliant, fully accessible resort up in northern Minnesota. They promise dark skies, and endless waters, located in the heart of Minnesota's protectedlLands, near the beautiful Boundary Water Canoe Area. Each guest cabin is accessible and comes fully stocked with all items needed for a lovely, fun, relaxing stay. Guests have use of kayaks and canoes for use on a beautiful lake where you can often see the Northern Lights and the Milky Way. Here's where to learn more and book your stay: North of North Resort

Don't miss the online Multiple Sclerosis and Neuroimmune Summit 2.0 starting August 20th. 

Here are some of the solutions you’ll learn at the Multiple Sclerosis and Neuroimmune Summit:

 Improve your nutrition

Discover the power of the Wahls diet, a modified paleolithic diet, and other advanced nutrition strategies to enhance your health.

Exercise with experts

Learn from professionals who understand the challenges and can guide you on exercising, even with severe disability, to improve your mobility and quality of life.

Strategies for better walking

Explore functional exercise techniques and create a safe home environment to enhance your walking ability and independence.

Manage stress and trauma

Gain insights into managing stress, addressing trauma, and developing mental health practices that contribute to your well-being.

Restore your sleep

Discover tips and techniques for improving the quality of your sleep, an essential aspect of your vitality.

⬆️Click the graphic to learn more and claim your *FREE* spot⬆️

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

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