MRI is done. Valium is in full effect. Time to read on the couch til I fall asleep. #MultipleSclerosis #LifewithMS

With an impending #MRI to make sure my #MultipleSclerosis meds are working on Monday, I’m planning to get everything I can outta this weekend. Mid 60s here we come!

Posting another #Introduction - plz boost far and/or wide!

#French-Born, #London-Based CompSci Teacher/Education PhD

#Education #Research #Phd, #BCS #Computing #Teacher #CCT
#CSEd #Programming #BCS
#ActuallyAutistic
#ActuallyADHD
I live with #MultipleSclerosis
#Zen / #Nonduality #Buddhist, weirdly into #Jung
#Research topics:
- #EdAI / #AIEd - #LLMs in #Education
- #CriticalStudies of #EdTech
- #Neurodiversity in #Education, and the experience of ND educators.

BBC News - 'Please don't deport us over MS diagnosis' plead British couple - BBC News
#Australia #MultipleSclerosis #BritishCouple
https://www.bbc.co.uk/news/articles/cvg7wnrp8jno

#chronicillness #multiplesclerosis #ChronicFatigueSyndrome #notjustsad
Eine Handvoll Internetfunde

Adjusting to increasing #disability is the hardest thing. It’s taken me the longest time to even admit to myself that I’m disabled, never mind to ask for help.

Exclusive: Sarra Hoy on Finding Hope Amid Chris' Cancer Diagnosis - Lorraine
"...Sarra has also been diagnosed with multiple sclerosis. Yet despite this, in an incredibly moving interview, Sarra tells Lorraine about the small joys we can all find in our lives..."

https://youtube.com/watch?v=gQAL0mPtwDM&si=Q0zrhntfAuUJmwW-

Researchers at Kaiser Permanente developed algorithm to reduce #bias in #multiplesclerosis treatment decisions, ensuring more equitable access to highly effective therapies. A study tracking over 6,000 #MS patients in Southern California found that after #algorithm was implemented, the use of highly effective therapies increased by 90 percent among Hispanic patients, 87 percent among Black patients, and 80 percent among white patients. #healthcare #bias #discrimination https://multiplesclerosisnewstoday.com/news-posts/2025/03/07/algorithm-help-reduce-racial-ethnic-inequality-ms-treatment/

Doing this a third time since I migrated to gamepad dot club (yay!) ....

#introduction

I have a passion for all things #art, #knitting, #spinning (fiber), #books, #gaming, and of course #cats - I have #multiplesclerosis and often forget I cannot do all the things.

Below are some pictures of stuff I've done:

(For the Horde mittens, electric Daedalus spinning wheel, and a digital drawing done in Procreate on my iPad)

NHS England first in Europe to roll out take-at-home pill for MS patients https://www.theguardian.com/society/2025/mar/12/nhs-england-first-in-europe-roll-out-take-at-home-pill-multiple-sclerosis #Pharmaceuticalsindustry #Multiplesclerosis #Medicalresearch #Hospitals #Society #England #Science #Health #NHS

A pathology professor links gut bacteria balance to #MultipleSclerosis severity. Patients had lower Bifidobacterium and higher Akkermansia levels, which may help predict disease progression.
By Ashutosh Mangalam, University of Iowa https://theconversation.com/out-of-balance-bacteria-is-linked-to-multiple-sclerosis-the-ratio-can-predict-severity-of-disease-251020

Out-of-balance bacteria is linked to #MultipleSclerosis − the ratio can predict severity of disease https://theconversation.com/out-of-balance-bacteria-is-linked-to-multiple-sclerosis-the-ratio-can-predict-severity-of-disease-251020

Unless you have or care for a person with #MultipleSclerosis, it's hard to explain how it feels. It's more than just walking; it causes pain, anger, depression, fear, and new issues daily.
#MS #Fatigue #Pain #BrainFog #spasticity
#MSAwareness

https://pubmed.ncbi.nlm.nih.gov/39981248/ Case report: Significant lesion reduction and neural structural changes following ibogaine treatments for multiple sclerosis (Chen, et al, 2025) #psychedelic #ibogaine #psychedelics #plantmedicine #neuroscience #multiplesclerosis #psychedelicresearch

RFK Jr. Is Already Taking Aim at Antidepressants
https://www.motherjones.com/politics/2025/02/kennedy-rfk-antidepressants-ssri-school-shootings/

Robert F. Kennedy, Jr has been planted by Trump in the role of Secretary of the US Department of Health and Human Services.

He wants to slash scientifically-established medication, hospital treatment, financial benefits, and government programs for people with these conditions:
- Chronic illness.
- Autism.
- ADHD, and medication including Adderall and Ritalin.
- Asthma.
- Obesity.
- Multiple sclerosis.
- Psoriasis.
- Mental illness such as depression and anxiety, and SSRI medication including Prozac and Zoloft.

RFK Jr says wants people who live with chronic illness such as those listed above — who often require daily preventative medication, a professional carer/assistant, or an assistive device for their daily functioning and to maintain their quality of life and sense of dignity and autonomy — to be stripped of their treatment and put into in "Wellness Farms" for "three or four years if they need it".

This is the sort of inhumane mistreatment of people requiring medical care that happened in the USSR and still goes on today in North Korea. It should not happen in the USA.

This move by RFK Jr is going to destroy childhoods, ruin families, cause people financial ruin, and for some people it will cost them their life.

Scheming on a trip to Disneyland in May for my MS-iversary. It’ll be ten years of living with the diagnosis. #MultipleSclerosis

Infusion for #MultipleSclerosis is officially done! And this time I got smart and took a couple days off so I don’t wind up in urgent care again. Woohoo!!! No more treatments for six months. Just an MRI and neuro appointment between treatments. #rituximab #FuckMS #rituxan

Waiting to start my infusion still. Took the premeds, checked in, paid my copay… now I’m just sitting. Sent my partner away. No need for both of us to be bored in a waiting room. #fuckMS #MultipleSclerosis