I turn to MSwhile, inspired by Stephen Colbert’s Meanwhile Segment, whenever my brain is too befuddled. In Colbert’s segment he gives beautiful, poetic descriptions of his monulogues, then he details Meanwhile: “But sometimes I like to get drunk and wander through the rough parts of news town, pick out whatever aimless, forgotten stories that look my way, then stand by the highway, stick out my thumb and elope with the sketchy drifter of news, that is my segment, MEANWHILE.”
So every once in a while, I like to take a break from the priking sensations in my brain and face, and take a large dose of wasabi on yellowtail sushi and feel the rush of the electrical current travel from my nose to my tastebuds and pricklingly eep their way to my brain stem while I hold a napkin over my face and hope my eye balls don’t pop out! This is MSWHILE…
MSWHILE, I am learning NEW MATH with my 3rd grander. Associative Property, to solve 3 x 5…. WHAT?!?!
I get the change, that it helps students prepare to learn to form complicated equations as they progress, but my Cog Fog brain sees some equations like 5 x 9 = 45 broken down to (2 x 9) + (3 x 9) = ? It short circuits me for a minute. Plus, my kid already knows her multiplication tables thanks to my Mom and Numberblocks. (Some episodes available on youtube but all episodes are available with a Netflix subscription.)
(If you are a parent to young kids, please check it out!)
MSWHILE, my daughter and I are both on antibiotics for two different problems. For me it’s a UTI that showed up the day before my Ocrevus infusion. If you have any kind of infection, cold, virus, or UTI you should delay your infusion until it clears up. Life throws stuff at us, and we adjust.
The fatigue has just been something else. Two months late, when I already experience the crap gap at about four and a half months.
Yet I’m lucky, because I have family to help me with the kid’s online school. My Dad made the incredible sacrifice to leave mom in Idaho where she can care for my grandmother, her mom, while she is in hospice care.
MSWHILE, Elezanumab data was finally presented at ECTRIMS, yet it failed to produce any measurable outcomes in Multiple Sclerosis Patients. (ECTRIMS is the international MS Research convention.)
Yet there is more good news, and more trials in progress for progressive forms of MS. I’m working on a blog with links to those trials, but meanwhile check out MStranslates coverage of the ECTRIMS conference. Very informative, thank you so much MStranslate!
So far I have watched Day three and am in the process of watching Days One and Two. In day three Brett Drummond discusses the outcomes of research trials, some disappointing. He also discusses Gut Microbiome and its influence on Multiple Sclerosis and symptoms involved in Multiple Sclerosis. Clinical trials have demonstrated that people with multiple sclerosis have an altered gut microbiome than healthy individuals in the trial. (Example a less diverse microbiome with less different species of healthy bacteria.). Being on antibiotics right now for my UTI, I’m thinking of the possible causes of this difference and wonder if it could be due to individuals with MS needing treatment with more antibiotics than the general population? That is just a thought, and extrapolation, but please listen to Brett Drummond’s coverage if you want to know more about the research in this field.
MSWHILE, John King’s, CNN’s Political Analyst, announced this week that he is immunocompromised and has multiple sclerosis. His interview discussing why he chose to disclose in that moment, when he has kept his diagnosis private for 13 years was motivated to clarify how Colin Powell was also immunocompromised, and though was vaccinated, passed away from complications. King explained that though Covid19 vaccines provide immunocompromised persons protection from the coronavirus, it is less protection than a person who is not immunocompromised, so we have to take precautions. It is tragedy to loose Colin Powell, and King is upset at individuals who have used his death to spread misinformation about vaccines. His discussion of his own struggle with MS, pulled at my heartstrings, even though it was clear he was trying to avoid making it emotional. Check it out here if you haven’t seen. It was incredible:
I’m still writing and I’m still here, its just been challenging to get a post published for the last month. As well as the physical issues, the cog fog, I have a difficult time choosing which blog to work on, when there is so much information I want to share. Thank you for bearing with me and checking this blog out. I’m going to try to get the information about clinical trials out to you first! 🙏🏼🧡
I hope you have a wonderful weekend!!! May God be with you till we meet again! 🧡🙏🏼🪔