MS One Disease, Millions of Realities — Why Medicine Still Gets It Wrong “MS isn’t one condition — it’s millions of personal realities. A raw, lived-experience breakdown of why no two cases are the same and why real patients know more than textbooks.”

"MS is not a single #disease it is a collection of personalised #neurological catastrophes wearing the same name tag.. #MS is a fingerprint, not a formula.": buff.ly/15k77Cr

by goblinbloggeruk
#MultipleSclerosis #ProgressiveDisease #ChronicIllness #disability #awareness

The Damage Before the Diagnosis — MS’s Silent War Inside the Brain New research from UCSF reveals multiple sclerosis starts damaging the brain years before any symptoms appear. Early warning proteins, hidden inflammation, and a silent war all before you even know…

"So when that first #symptom finally hits when your #balance goes, or your legs go dead, or your words turn to fog it’s not the start. It’s the reveal. The curtain finally lifting on years of hidden damage.": buff.ly/EcKO1sy

by goblinbloggeruk
#MS #ProgressiveDisease #InvisibleIllness #disability

The shift from wife to caregiver was instant and soul crushing My heart broke as I realized life is changing, but despite that we are still a team, just now navigating uncharted waters

"Andrew was diagnosed with young-onset #AlzheimersDisease, a rare variant form called posterior cortical #atrophy, or #PCA. Before this, I had never even heard of PCA. Now it defines our lives.": buff.ly/Mb87gSq

via globeandmail
#ProgressiveDisease #marriage

5 Ways To Prevent Falls With MS and Balance Problems | MyMSTeam If you’re living with multiple sclerosis (MS), you may find that sometimes it’s difficult to maintain your balance, causing you to fall down. In fact, more

“If you have #balance issues, you can’t afford to have other #FallRisk factors in your life as well. For example, people with #MS may develop #vision problems, such as blurriness, optic neuritis, and double vision.”: buff.ly/ODVFYOU

from MyMSTeam
#ProgressiveDisease

Writer’s Block, Good Ideas, Reality, and Hospice I haven’t been able to write these last two months, or I’ll start and lose any motivation. It’s taken time to adjust to my new trajectory of transitioning to hospice. The simplicity of my plan in s…

“#Dying is different for everyone, but I’m facing a #RareDisease with not enough information or specificity. There are multiple paths progression could take which decides how things play out": https://buff.ly/3zy7SmL #ProgressiveDisease #Dermatomyositis #TerminalIllness

When losing our abilities to FA, the feeling of grief is real Grief is real whether it's for a lost function or for a lost loved one, columnist Jean Walsh has found in her life with FA.

Sometimes my #RareDisease, #ChronicDisease, #ProgressiveDisease loses cause a lot of frustration that is actually an expression of grief.

friedreichsataxianews.com/columns/when...