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In the last 1-2 years my wife finally found good sleep, and it's been life-changing. It can be done and is so worth trying.

Tomorrow's Ask an MS Expert can help: "Enhancing Sleep Health," 1-8-26 at 12-12:30 p.m. ET

Sleep is crucial for people with MS dealing with fatigue, spasticity or cognitive changes. Learn about the 4 domains of sleep health and the science behind good sleep from Katie Siengsukon, professor of Physical Therapy, Rehabilitation Science and Athletic Training at the Kansas University Medical Center.

Streaming on Facebook, YouTube, and Twitch. www.nationalmssociety.org/how-you-can-help/get-involved/cale...

This program originally aired on May 8, 2025. All programs are recorded and available at the MS Society's YouTube channel.

#sleep #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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My MSed up Life: My knee gets engine knock!

Like a car in wintertime, it doesn't want to turn off = tremors.

Sit down —> engine knock

Cross my legs —> engine knock

Sneeze —> engine knock

Things that have helped: Heat/warmth (a blanket, sunning yourself). Stretching or exercising the leg. Holding or pressing the knee in place. Oral baclofen.

What has finally stopped it was getting a baclofen pump. Like what has helped country star Clay Walker (search for our recent post about him), this hockey puck-sized implant feeds powerful micro-doses of baclofen (a muscle relaxant) directly to your spinal cord. If the tightness, pain and fatigue of spasticity starts taking over your life, ask your specialist about this option. I've had this for eight years and it has changed our lives. Hit me up if you have any questions.

#MultipleSclerosis #Disability #Pain #Spasticity #Caregiving

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To help control chronic symptoms from MS, country music star Clay Walker feels improvement after receiving a small muscle-relaxant implant in March.

“The surgery gave me a lot of hope,” said the 56-year-old singer of "Live Until I Die" and other hits. “Am I walking perfect? No. Am I walking better? Absolutely."

After 30 years of living with MS, Walker said that the disease was starting to progress and affect his day-to-day life. Due to MS, Walker experiences spasticity, a chronic tightness in the muscles that often results in good fatigue, pain and mobility problems. MS causes different symptoms in every patient but spasticity is a common one.

“At the beginning of the year, I noticed I was having a lot of difficulty with balance and walking, and it really started to worry me,” Walker said. “I knew I had to do something.”

In a procedure that has been around for decades, the surgery implants a hockey-puck-sized baclofen pump that periodically releases muscle-relaxant medicine to help with muscle spasms and tension. The pump is set to individual, very personalized doses and schedules to release baclofen into the system throughout the day and night, as needed. Baclofen is most often taken orally in tablets, but when that is ineffective, the pump is a great alternative to get hold of out-of-control pain and spasticity tightness. While the baclofen tablets often contain 10 mg or so, the pump feeds baclofen directly into the spinal fluid and requires only very small but powerful doses.

For Walker, the results speak for themselves. "I got on a treadmill the other day without a harness holding me up to keep from falling, and I walked for five minutes," he said. "That is progress."

He acknowledges that he still has issues with balance, but he's working through with the resolve of someone who has managed remaining relapsing MS since 1996. His Clay Walker Foundation throws a huge benefit in Houston every year, helping those with MS afford the services they need.

Source: "Why This County Star Feels ‘Blessed’ as He Battles Multiple Sclerosis" by Gavin Boyle, Movieguide.com.

#PainManagement #Spasticity #Baclofen #BaclofenPump #ClayWalker #MultipleSclerosis #MightyTogether #newlydiagnosed #Disability #Caregiving #autoimmune

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MS has turned me into Goldilocks

Heat used to be my kryptonite. Too much summer heat would turn me into a dishrag and make me literally delirious. One of the incidents that sent me to the doctor in the first place was when I collapsed during a summer hike in the Great Smoky Mountains of Tennessee and my girlfriend (now wife) dragged me a half mile to the car.

Now, many years later, I'm more sensitive to cold, which triggers muscle tightness from spasticity. I'll shy away from fans, or wear long sleeve shirts until it's well into the 80s F. From decreased circulation because I don't walk anymore, my hands and wrists are often cold. So you'll find me basking in the sun like a lizard on a rock. The sun thaws my wrists and relaxes all of the low-grade spasticity-tension going on in my body 24/7. Now I know why seniors flock to Florida.

My friends say, “Man, aren't you hot?”

Goldilocks says, “This temperature feels juuuust right.”

#MultipleSclerosis #MightyTogether

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Living with family in Denial

Hi 👋

I am currently living with chronic pain and muscle spasticity that I’m struggling to get diagnosed because I don’t have a family doctor. I’m physically and financially dependent, so moving out isn’t an option right now.

A family member I live with is in complete denial about my condition, constantly calling me lazy and blaming my issues on not doing heavy exercise—even though I can only manage light stretches and physio until I have a proper diagnosis.

The constant criticism is really wearing me down, and my mental health is already fragile because of everything I’m dealing with. Does anyone have tips for coping with this kind of situation?

#ChronicPain #Depression #FamilyAndFriends #MentalHealth

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Introduction

#CerebralPalsy
Hi! I'm Percy. I'm a nonverbal autistic adult AAC user with suspected spastic diapelegic Cerebral Palsy. I'm trying to learn more about CP and how to manage my spasticity.
I mostly have problems with my legs, but I have problems with spasticity in my arms too, if I use them too much.
I think my CP went unnoticed because I am hypermobile and I stretched regularly during school because of gym, as well as the fact that because I am nonverbal/have language disabilities I couldn't explain things to my family.
Plus I thought what I went through was what everyone experienced.

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Ash-Burger's Syndrome (the story of my life)

I'm clumsy. I've always been clumsy. People are terrified of telling me to take a break because I do. I break cups, glasses, plates - you name it. They nicknamed me Zorba the Greek, one place I worked because of this. Talking of jobs - with me they've always been few and far between. nothing lasts long. I either get bored and leave or get sacked.

"Now look what you've done!" or "What happened to that order I gave you, to send out to Mr Harvey on the eighth?" (Well he didn't specify which month, did he?).

To say I was socially inept, is mildly true too. If I had a drink in my hand, I'd either drop it or spill it on someone.

"You clumsy idiot!" (Well yes, I know that - can you be more specific or add something else of interest to that point?).

I was never a great talker and got on better with kids and animals, than I ever did with adults or the human race altogether.

"Stop grimacing at me you nutter!" And other plaudits like this, would come my way. Talk? How could I? I could barely get my body to work, let alone my brain. Occasionally I'd let slip a terrible pun, to break the ice, in social situations. Every time I tried to be clever, an uncoordinated load of stumbling rubbish would come out.

"What do you mean, I-I-I, ig ag ooh?"

Ruthless Mickey takers at work or down the pub, would plough right into me as soon as I opened my mouth, so I shut up again or I'd burst into hysterical laughter as I found the joke funnier than anyone else.

"For Christ's sake shut up! The joke's over!"

Then there were the times I couldn't understand what anybody else said. It was like that Far Side cartoon - What you say and what a dog hears:-

"Blah, blah Rover. Rover blah, blah."

It was like I was hearing a foreign language or none at all.

"Cat got your tongue? Well it bloody should have - you don't use it enough, to need it!" (Ha-ha - very funny I thought but couldn't stand the humiliation of trying to actually say it).

Hugh and Milly Asian? Now that's a couple I know well! Yes, my literal sense of humour categorised me as autistic, even if nothing else did. Then there was phonetic spelling.

"That's not how you spell it Wright - get a dictionary!" ( Wright, wrong again! School, who needs it? If they want to spell it that way, why can't they say it that way too? It's all so jumbled up and illogical!).

There's some legend that says having Asperger's makes you a mathematical genius - not me. On the way to school I obsessively count the telephone poles, yes but I couldn't add up to save my life or yours, when in the classroom. Oh yes, the stories of us being selfish and self centred are true. We live in our own little world and you can't enter, even with a valid passport. Our borders are closed Mr Schickelgruber and nobody can come through without our express permission, so turn your tanks round and go home.

We are a strange mix of contradictions - egotistical, blunt in our speech, when we do open our mouths. Bloody minded and stubborn, yet fearing confrontation because in a fight, we wouldn't know when to stop - at least that is what we believe. It takes a hell of a lot to get us going and just as much to put the brakes on: Quick to anger, slow to cool down and come back into Earth orbit, if we don't miss it altogether. Innocent, vulnerable, trusting and blundering. It is this openness and honesty that turns us into the brainy creature we so often are. While others play about in the classroom or outside it in the playground, developing their social skills through interaction, we shut up, sit still and, look and learn. We shut them out and let the light of understanding in. Ordinary people connect with the outside world, through talk and physical contact - not us. We are geeky, clumsy and inappropriate in our comments and movements but we connect internally with ideas. They can dance, play football, cake on make up or make cup cakes but not us. Books are our only friends - failing that our computer screens are. We'd rather text than talk, write and read rather than speak - even to each other. We want to know how the universe works and maybe even one day, we'll find out how we work but not today, oh no, not today...

We know we are not liked - even feared and despised by some people or why attack us? (You only bully what you're afraid of - what challenges you to be what you are not or at least makes you think about it as a subject). Limited intelligence, criminality and defensiveness go together - leading to ignorance and suppression, by those wanting to shut out the light. Perpetual motion and emotion, keeps them on the move but not us. We don't want to leave home or even go out. We just want to collect our train numbers or plonk about on our computers in peace. Failing that we want to vegetate in front of the goggle box. We are not active participants in life. We are just passive viewers, along for the ride (Don't ask us to drive -we're not up to it or up for it either). We understand sound and motion go together (as with music and dance) but we are detached because we are observers of life, not activists (We don't move with the times because we are lumps of rock - orderly and controlled, not relaxed). We see only chaos and confusion in the world - danger we are not ready to face. Go for a swim? No thanks! You could drown and then there's all the pollution in the sea and God knows what in the rivers and swimming pools! We don't enjoy our lives, we study them for that great examination in the sky, when we all kick the bucket (Did we do well?). Live our lives? Maybe next time. Spontaneity is for wimps - we love routine. Order and discipline, that's us.

We're not in our bodies but always outside, looking in. This explains our odd gait as we're not in contact with life or society's natural rhythms.

We feel continually under stress because we are. Our twitching, tics and odd mannerisms show this. I need to crack my joints continually because of this (neck, between the shoulders, lower back (especially this point), ankles, knee caps, wrists, fingers and toes - by the way did I mention we're obsessive list makers?). This is why you'll see me and others like me, suddenly tilt their heads to one side or move our hands and feet into strange positions, for no apparent reason - we need to relieve our spasticity (Perhaps this is where 'Jerk' comes from as an insult?). It could explain the difficulty swallowing, indigestion, sensory sensitivity and allergies as well. Maybe too, it explains the dietary fads of eating nothing but a particular food - like crisps, beans, bread or biscuits, for months, even years on end (I've heard that we're carb eaters, avoiding protein and choking on fats).

Is it any wonder that we're stressed? Our attention to detail driven characters, fear of making mistakes, rigid personalities (love of tight clothing), passion for order, discipline and routine - all contribute to the pressure we feel under and put ourselves under. If we weren't so visually orientated, we probably wouldn't be so language impaired, continually swallowing nervously in social situations. This passivity and receptivity is probably what allows us to be so logical but it also leads to the need for space and the temper tantrums that follow, should we not get it and find we cannot cope: The sensory influx that drives us insane - the obsessive compulsion to wash our hands and protect ourselves from every other potential danger , turns us into an explosive powder keg of emotions, which blows up like a volcano every so often.

They say it is a male thing - this turning down and in, in curiosity, then up and out with answers and insights. This mental pressure is the same as physical pressure as in sex and other expressions, I believe. The physics of it is male concentration versus female dispersal of attention and energy. This is why males are more volatile and suspicious because of it (wound up and easily triggered into

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Happy National CP Awareness Day! 💚

Today, March 25, is National CP Awareness Day! I hope everyone has an amazing day & can acknowledge their own strength in the obstacles they are facing. To everyone who has CP, I’m here for you and you are not alone. Let’s spread awareness of all the beautiful things Cerebral Palsy can be.
Happy CP Awareness Day! 💚

#CerebralPalsy #Spasticity

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