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Living with MS (or without it), find a passion, art, hobby, craft, project or whatever, that keeps you going.

Such vivid writing here by Gary Wien, the publisher/editor of an outline theater magazine who was diagnosed with secondary-progressive #MultipleSclerosis.

There are so many details we can all relate to – the numbness of his feet when he tries to drive, the accessibility challenges he discovers when trying to review local plays, the years-long internal argument he had over whether or not to go public with his diagnosis.

It's a great read and inspiring too. Behind the Curtain: Ten Years of Covering the Arts and Battling MS

#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

Behind the Curtain: Ten Years of Covering the Arts and Battling MS

There are some anniversaries you dread - certain dates each year that remind you of something you wish you could forget. I combine the day I was initially diagnosed with Multiple Sclerosis with the day that diagnosis was confirmed into one long anniversary. Then I add the date I started my first MS treatment. It equals two months of depression from May to the end of June each year, but this year was worse than usual. This was the 10th anniversary and it made me take a good look at my life.
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The bright side of these hot days — a few minutes of daily sun is good

Vitamin D deficiency seems to be tied to worsened MS symptoms, and actually vitamin D deficiency is widespread internationally.

But just 8-10 minutes a day on face and arms gives us what we need (according to UCLA Health and the Royal Osteoporosis Society).

Then cool off indoors with a few frozen grapes out of the freezer. Try it ... you'll thank me later.

#MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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How to deal with feelings of guilt in a caregiving .

Renae's 37yo son takes care of her because she has muscular dystrophy. She says, “I feel blessed that he is willing and able to care for me. However, my gut-mother-instinct worries that I have swallowed up his life."

There is a care support crisis in our country right now, and at least 53 million family members are stepping up to give that care — daughters, sons, spouses, parents, relatives. But sometimes feelings of remorse can come with knowing that loved ones have to care for us, often at the expense of their own well-being. And even caregivers themselves feel guilty due to impossible expectations or about taking time for important self-care.

Learn more about coping and support here: How to deal with feelings of guilt for needing care

#caregiving #MultipleSclerosis #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability

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How to deal with feelings of guilt for needing care

Care Support Working Group members share how they cope with difficult feelings of guilt. 
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Tonight, Thurs. 6/12 @7 PM Central — New to MS: Navigating Your Journey virtual program

Connect and learn with others who are new to multiple sclerosis and navigating their own journeys. This program offers info on MS and its symptoms, and advice on how to manage your case. Talk to other attendees, ask questions of a healthcare professional and a volunteer who is living with MS, and share your own experiences.

Also find the New to MS Resource Guide on the same page, with info from the program. Note: This program repeats on the second Thursday of every month.

Sign up at www.nationalmssociety.org/Symptoms-Diagnosis/Newly-Diagnosed/New-to-MS

#multiplesclerosis #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability #Caregiving

Empowering people affected by MS to live their best lives

The National Multiple Sclerosis Society exists because there are people with MS. Our vision is a world free of MS.
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Ask an MS Expert (Veterans Program): Understanding and Accessing MS Medications Thurs., June 12, 2025 12-12:30 p.m. ET

Streaming on Facebook, YouTube, and Twitch.

Medications are vital for people with MS to live their best lives. Learn about the different types of MS meds from Dr. Carolyn Bevan (neurology, Northwestern Medicine & Chicago VA MS center), and how to access meds through the VA plus how to work with your doctor to find the best fit for you.

www.nationalmssociety.org/how-you-can-help/get-involved/cale...

#multiplesclerosis #Veterans #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability #Caregiving

Empowering people affected by MS to live their best lives

The National Multiple Sclerosis Society exists because there are people with MS. Our vision is a world free of MS.
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Think of MS/chronic-disease fatigue like dealing with a loan shark — if you don't pace yourself and manage your energy today, you'll pay for it later.

Smart article with images that bring it all home, by a veteran with MS. Do these strategies sound familiar? —

Energy Budgeting – Instead of using everything at once, spread it out. Small tasks, breaks in between, and never assume you're getting away with overdoing it.

Prioritization – Ask yourself: Does this actually need to be done today? If the answer is no, it can wait.

The Art of Saying No (The Hard Pass) – People without MS don't always get it, but you don't owe anyone an explanation. If your body says no, listen.

Rest Before You Crash – Waiting until you're already exhausted is like waiting until your car runs out of gas before stopping at a station. Rest before you're running on fumes.

MS: The Energy Loan Shark

#multiplesclerosis #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability #Caregiving

MS: The Energy Loan Shark

MS fatigue is like a rigged system—burn through too much energy today, and you’ll pay for it tomorrow. Learn why everything costs more and how to manage it.
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One of the best steps I took to get a handle on chronic MS fatigue & DGAF-ing every day — and it was a difficult step — was to get used to a CPAP.

When my neuro prescribed CPAP, I thought, "ANOTHER THING!" But it was totally worthwhile: After my first full night with the CPAP, my daily 20-minute nap disappeared, and I haven’t taken one since.

Many of us don't realize we have treatable sleep apnea because we deal with so many other problems that we assume are the cause for our poor sleep, says Dr. Abdulghani Sankari, pulmonologist at Detroit's DMC DRH Sleep Disorders Center.

“They have pain issues, they have urinary issues, they have cardiovascular issues … They’re tired and not able to sleep well because of all these factors,” he says, “so they don’t recognize that there are other reasons … [why] they feel tired during the day.” CPAP/BiPAP often addresses manifested symptoms like daytime listlessness, waking up unrefreshed from sleep, and unexplained chronic pain. CPAP/BiPAP also helps improve aspects of sleep-affected cognition: memory, forgetfulness, attention span and intellectual abilities like troubleshooting problems effectively.

Letting these problems linger can even cause our condition to worsen. “The frequent interruption of breathing at night leads to what we call chronic intermittent hypoxia, so the body is exposed to low levels of oxygen, and that produces byproducts of inflammation and waste that [aggravate] symptoms on the central nervous system,” Sankari says. Unchecked sleep apnea is also a risk factor for high blood pressure, heart problems and type 2 diabetes. CPAP is an effective treatment for sleep apnea. Got questions? Pls contact me.

Better Nights, Better Days: CPAP, BiPAP and Disability

#fatigue #MultipleSclerosis #MightyTogether #ChronicIllness #autoimmune #newlydiagnosed #Disability #Caregiving

Better Nights, Better Days: CPAP, BiPAP and Disability

For years, Jennifer Miller, 55, of Carleton, Michigan, was a problem sleeper, snoring and gasping through the night. Because she struggles with PTSD from the crash that gave her a T10 spinal cord…
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