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John
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@themightyjohn
Multiple Sclerosis Connections 13h

We Are in the World Is Sylvia Longmire? Wheeling around the world

Sylvia Longmire uses a wheelchair due to #MultipleSclerosis, and tirelessly travels around the globe, showing us wonderful places to go and how best to do so.

She's an author and former Defense Department analyst. But she is best known for spinning around the world to famous international destinations or to a charming small town not far away from you — always with recommendations for a good bite to eat, an interesting place to see (she's an art-museum docent herself), and are those "accessible" accommodations really is useful as advertised?

Badass Solo Traveller Sylvia Longmire Isn't Letting MS Slow ...

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

Badass Solo Traveller Sylvia Longmire Isn't Letting MS Slow Down Her Travels

Having been to over 60 countries, disability advocate Sylvia Longmire shows other women that travelling with MS is possible and enjoyable.
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John
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@themightyjohn
Multiple Sclerosis Connections 2d
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"I’ve also learned that change is inevitable. Even when I’m having a really bad flare or feeling weighed down by depression, I remind myself that

it isn’t permanent and it will eventually pass."

"Above all, I’ve realized it’s important to be kind to yourself and give yourself grace to handle the challenges you face." — Nicole Pedra, 37, diagnosed with #MultipleSclerosis at age 10

#MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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John
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@themightyjohn
Multiple Sclerosis Connections 6d

MS and caregiver fact of life: Unsolicited comments & advice, "You're not doing it right"

Sometimes it comes from someone I have no idea who they are, but it hits me just right (or wrong). #@$%!

Has this ever happened to you? How do you deal with stuff like this?

Caregiver concerns:Bruce Willis' wife addresses questions. www.marketwatch.com/story/emma-heming-willis-on-moving-husba...

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

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John
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@themightyjohn
Multiple Sclerosis Connections 1w
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It's that tiredness that makes you fall asleep early, and sleep in late, and when you wake up, you're still tired.

You're not just tired — you're MS tired.

How many nappers do we have here?

How many extra coffee drinkers?

What tips can you share with the community to help with fatigue?

Yawn, that was hard. Bye.

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

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John
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@themightyjohn
Multiple Sclerosis Connections 1w
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John
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@themightyjohn
Multiple Sclerosis Connections 2w
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Walking backwards = walking better: Researchers find people with can walk better & fall less often — just don't chew gum at the same time.

A study at Wayne State Univ. in Detroit shows improved gait & balance, changes in the brain, and >lower numbers of falls.< This is all supervised, of course, and more study is needed.

My wife will be pleased because she swears by its benefits. Me, I can barely walk going forwards!

Uh, any takers?

Study: journals.lww.com/jnpt/abstract/9900/structural_and_functiona...

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

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John
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@themightyjohn
Multiple Sclerosis Connections 3w

Interesting: “Walk in my Shoes” interactive exhibit features sensory simulation kiosks to help others understand the often invisible symptoms of MS.

In your exhibit, what #MultipleSclerosis or #ChronicIllness symptom would go in your kiosk?

Mine would have people walking past me, coming and going, some staring — and every once in a while everything falls on its side with a thud (and some people keep walking past).

Sensory kiosks recreate Multiple Sclerosis symptoms at Bengaluru event

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

Sensory kiosks recreate Multiple Sclerosis symptoms at Bengaluru event

Roche India and MSSI organized "Walk in my Shoes" event to raise awareness about Multiple Sclerosis symptoms and challenges.
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John
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@themightyjohn
Multiple Sclerosis Connections 3w
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Group Leader
John
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@themightyjohn
Multiple Sclerosis Connections 3w
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We're turning the tide against MS.

-- With better diagnosis and treatments, far fewer people with MS become progressive. It used to be half of MS cases became progressive within 10-20 years. Now about 10% become progressive over a span of 32 years.

-- If you were dxed in 1990, there were ZERO treatments. Now there are more than 20, with many more on the way — plus a vaccine is in testing.

multiplesclerosisnewstoday.com/multiple-sclerosis-prognosis-...

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

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John
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@themightyjohn
Multiple Sclerosis Connections 4w
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Help! What do you do that helps you sleep?

According to this article: — At least 40% of people with MS have insomnia symptoms.

— 20% to 50% have obstructive sleep apnea.

— People with MS are at least three times more likely to have restless legs syndrome.

Thanks for your suggestions!

www.nationalmssociety.org/news-and-magazine/momentum-magazin...

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

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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