Managing Sensory Overload

Sensory Overload is a fairly common symptom of Multiple Sclerosis, and occurs when a person experiences overstimulation from the environment. For people with MS, Sensory Overload can sometimes make it difficult to socialize, travel, shop, and drive. This month, we asked our community members at MultipleSclerosis.net about their experiences with Sensory Overload, and how they manage this strange symptom. Have any of these strategies worked for you?

What is the relationship between Sensory Overload and MS?

Cognitive dysfunction is a common symptom of MS. Along with changes to memory, attention, problem solving, and judgement, Sensory Overload is a type of cognitive dysfunction.1

What causes Sensory Overload?

According to our MS community members, noise, crowds, strong smells, bright lights, and other types of sensations can trigger Sensory Overload. For some patients, Sensory Overload is related to myloconous, an involuntary muscle reaction that makes many patients highly sensitive to noise.2  People affected by anxiety, Sensory Processing Disorders, Autism Spectrum Disorders, and Post Traumatic Stress Disorder may also experience Sensory Overload.3

What happens when a person has Sensory Overload?

Sensory Overload can cause intense stress and confusion, and can make it difficult to think clearly, make decisions, or focus. Many MS community members experience Sensory Overload in crowded environments, such as shopping malls, grocery stores, or airports.

Community Feedback: Sensory Overload Triggers

“My friends and family love to go to Vegas. I HATE CASINOS! The noise is TOO much!!!”

“It even happens at home with the TV on.”

“Sunlight doesn’t bother me, but bright indoor light does.”

“I get so irritable with the daylight/brightness.”

“Sounds and activity and people just overwhelm me and fatigue me faster than anything!”

According to our MultipleSclerosis.net community, Sensory Overload can occur in many environments. Some patients experience Sensory Overload while traveling (such as a noisy airport), while others have trouble with bright lights, TV sounds, and radio noise. For many of you, Sensory Overload is triggered by talking: Noisy kids, people talking too loudly, multiple conversations in the same room, or people talking over one another can all lead to Sensory Overload. Keep reading for some ideas for managing these triggers!

Community Feedback: Avoid Overstimulation

“I avoid crowds or big social gatherings.”

“Noisy places, crowded places – I just have to leave.”

“I have pretty much become a homebody…I just can’t deal with all the auditory and visual noise.”

To prevent Sensory Overload brought on by crowds and loud conversations, some of our community members choose to avoid these situations all together. Especially during a relapse, you may feel like you need to stay home or spend some time alone- and that’s okay! If you feel better at home and want to avoid Sensory Overload triggers, you can always connect with friends and family through social media or the internet, or talk to your MS peers through our community pages.

Community Feedback: Limit Stress

“If I want to go to a party, I have to take a nap, wake up, drink coffee and take an Advil on the way out the door”

“Multiple conversations going on in the same room does the same thing to me.”

“Disneyland was bad…My brain gets so confused and it’s a battle to stay calm…It’s hard for me to travel to very loud busy places. Even airports can be undoing.”

To limit Sensory Overload, some community members still participate in social events, but leave when they start to feel over-stimulated. Some patients also try to avoid situations that they know will be too noisy, like by choosing a more quiet restaurant over a crowded one. If you have trouble with Sensory Overload when traveling, you may choose to visit less busy, more relaxing destinations, and if the airport is too stimulating, you could travel by car or train instead.

Community Feedback: Limit Noise

“I get overwhelmed even from the radio, grandkids when they’re being noisy, if someone talks too fast, too loud or too long….”

“I feel bad telling others they are too loud, but sometimes it hurts listens to them”

Many of our community members experience Sensory Overload when they are surrounded by excess talking or noise. If loud conversations make you feel overstimulated, consider meeting up with friends and family in quieter settings (such as at home, rather than in a cafe), or spending time with people 1-on-1. If you have friends or family members who are just too noisy, consider talking to them about Sensory Overload. While saying “You’re talking too loudly” might feel awkward, saying “Every noise feels 10 times louder to a person with MS, so I need us to be really quiet” might help people understand!

Works Cited:

  1. Simmons, Jonathan. “MS Symptoms.” MultipleSclerosis.net, Health Union, multiplesclerosis.net/symptoms/. Accessed 16 Dec. 2017
  2. G, Matt Allen. “Myoclonus – Why am I So Easily Startled by Sound?” MultipleSclerosis.net, Health Union, 19 Nov. 2015, multiplesclerosis.net/living-with-ms/myoclonus-why-am-i-so-easily-startled-by-sound/. Accessed 16 Dec. 2017.
  3. McGlensey, Melissa. “21 People Describe What Sensory Overload Feels Like.” The Mighty, 11 Feb. 2016, themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/. Accessed 16 Dec. 2017.
Share

A Community for the Season

We’re in the heart of the holiday season and while some individuals find themselves joyously celebrating, we also hear from clients who experience feelings of distress during this time of year. The holidays can elicit some very strong emotions and concerns for some, which makes it difficult because there’s an expectancy to be cheery and elated throughout the entire season even though it can be a time of challenge and pressure, too.

For those performing holiday tasks, making preparations, and attending gatherings, this can be a stressful and exhausting time and others may not always understand why. For those not celebrating, the holidays may represent a period to have to cope with and just push through. Perspectives and experiences can be very different during the holidays, and for those who may be having a difficult time, it’s important to know that you are not alone. You can find support, comfort, and understanding from others through My MSAA Community.

“This is a great place to touch base when you need a question answered, want to vent, or just need the company of somebody who understands.”
– Community Member

My MSAA Community is a free, online peer-to-peer forum for members to share their MS experiences. The community is a safe space that allows you to post a question and get answers from members of the forum, share your MS journey, connect with others, and contribute to ongoing conversations – all from your smartphone, tablet, or computer.

If you haven’t done so already, please check out My MSAA Community today!

 

Share

A Multiple Sclerosis Night Before the Holidays

By Penelope Conway

’Twas the night before the holidays, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.

Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.

When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.

As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I lost, earlier this year.

Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
And he whistled and shouted, and called them by name.

“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”

And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.

He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he actually said with a twinkly eye.)

Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.

He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.

Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”

 

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Share

It’s Kinda Like the Grinch…

Oh the Holidays!! As we celebrate the last day of Hanukah and prepare for the arrival of Jolly Old St. Nick and the start of Kwanza, it’s easy to get bogged down and mired by the dealings of the holidays. The shopping, the preparing, the work functions, community collections, the (insert your religious organization) gathering, the wrapping, the white elephants, the bows, the ribbon, the food planning, the change of planning, the cards, the out-of-town guests, the unexpected guests, the overly friendly neighbors or being the overly friendly neighbors…the list could go on forever. But we can often find in the midst of all of this that we ourselves are burnt out before the joy of the holidays even really sets in.

We can become the Grinch of our own story, looking around at all the Whos out in Whoville and internally rolling our eyes in exhaustion. I get it, I’ve been there. I found myself there recently as the calendar ticks away the days marching closer and closer to the last week of the month. Then the other day I met my own Cindy-Lou Who in the form of a manager at the biggest culprit of holiday joy stealing…the Mall. She was older and had been clearing misplaced items from shelves when we crossed paths watching two mom’s bicker over who was in line first and she said, mostly to herself but loud enough for me to hear, I love this time of year…it brings out a little nutty in all of us. Yes, you read that right…her love of this time of year came from the knowledge that we are all our craziest selves during what should be the happiest of times. I was intrigued as I am by most interesting strangers I come across and asked her why. To which she said, Why Not. She continued that there are so many things going wrong in the world, big things that she could do nothing about. That made her worry and scared for her grandkids. Things that were loud and unsettling and that she hoped she would never see again in her lifetime. But this, this was something she could step into and speak into. And she did. She walked over and politely asked the women what was going on and how she could help them. She even took one over to the customer service counter and proceeded to cash them out, speaking directly to them in a lower voice I couldn’t hear and then wish the mom a Happy Holiday. She smiled at me as she came back around the counter and said, sometimes we all need to be reminded it’s got nothing to do with the stuff. It’s just stuff, that will probably be forgotten by next year. We put so much pressure on ourselves for this and that, but it’s just stuff. Just stuff. I smiled at her and looked at the guy behind me as he proceeded to order gifts on Amazon while in line buying gifts at the mall and answering a text from his girlfriend and looking like the ghost of Christmas past. I mumbled to myself… it’s just stuff.

And not just the gifts, all of it. The preparing, the work functions, community collections, the (insert your religious organization) gathering, the wrapping, the white elephants, the bows, the ribbon, the food planning, the change of planning, the cards, the out of town guests, the unexpected guests. We shouldn’t let it get us so bahumbugged that we become the Grinch (yes I know I mixed storylines there). Don’t get bogged down and burnt out over The Stuff this year. This holiday season take a page from Dr. Seuss’ book “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more”

Share

Shopping at Chair Level

By Doug Ankerman

The holiday season means it is time to hunker down into my wheelchair and face the Christmas hustle and bustle at seated-eye level.

Yes, Christmas shopping is all the merrier from the seated position. (Now I know why Santa is always sitting down!)

So with my list in-hand, let’s roll to the mall and purchase our “gifts of joy”……because nothing says “you are special to me” MORE than a shiatsu massaging cushion from Bed, Bath & Beyond.

Come on in

My first hurdle is just getting into the dang store!

This entrance at Sears is clearly marked “handicap accessible,” yet, there is no button to open the door. Forget the wheelchair, I quickly realize my “handicap” is trying to get into the place!

Usually, another courteous shopper will be nearby to help hold the door for you…..but this is Sears. I’ve seen ghost towns with more foot traffic!

Seasonal spirit

I’ve noticed store clerks and other shoppers are extremely helpful when you are in a wheelchair. They go out of their way to assist you. I figure, they feel bad because this guy has wheels for feet. That’s why I am always “over-the-top” positive when in my chair as I try to dispel the “woe is me” wheelchair image.

The squeeze is on

Shopping in a wheelchair can be tough battling crowds and parking — but the real challenge is in the aisles.

The squeeze is on as you try to fit between the displays for house slippers, glittery turtlenecks and NutriBullets.

Here’s an aisle that would be a tight fit for an anorexic fashion model — let alone a wheelchair!

Going through there gave me greater appreciation of  birth.

Caution: Stay Back

Finally, from a seated position, you tend to get an in-your-face view of everyone’s backside.

Gluteus I-Maximus.  I’ve seen butt cracks that make the San Andreas’ fault seem like a fine line.

Hip Huggers scream “uncle” in mercy.  I saw a jeans tag I gotta believe was triple digits!   If denim was an animal — the species would be extinct!

And from my box seat, it is not only “seeing is believing”…no, you see, I get to enjoy the “sounds and smells” of the season as well, if you will.  Let me put it this way, no one claims to eat the holiday fruitcake, but someone is — and I am caught in the cloudy, odoriferous haze that follows.

Through crowds, long lines, charge cards and gift receipts…wheelchairs or not, we muddle through to finish our holiday shopping with moments to spare.  Just enough time to catch our breath before we gather with family & friends — AND gear-up for our December 26th visit to the stores to return our house slippers, glittery turtlenecks and NutriBullet, right?  May you have a tremendous Christmas holiday!

*Doug writes about MS and other nonsense with a humorous twist at myoddsock.com.

Share

Italian Soft Biscuits

This month’s recipe comes from MSAA Staffer, Kaitlyn G.

My grandmother’s recipe for Italian Soft Biscuits always reminds me of the holiday season. They are the perfect treat for those who want to make something simple, but still get in the holiday spirit! Jazz them up with red, green, or blue sprinkles and you’ll have the perfect dessert for any holiday party. Enjoy!

Ingredients for biscuits:

  • ¼ lb. of butter
  • 1 ½ cups of sugar
  • 6 eggs
  • 3 teaspoons of baking powder
  • 2 teaspoons of vanilla
  • 1 teaspoon of lemon juice
  • ½ teaspoon of anise
  • 3 cups of flour

Ingredients for icing:

  • 1 ¼ cups of powdered sugar
  • 3 tablespoons of milk
  • ½ teaspoon of vanilla
  • 1 teaspoon of lemon juice

Instructions for biscuits:

Preheat the oven to 350 degrees. In a bowl, cream the butter and sugar. Add eggs one at a time into the batter. Add vanilla, lemon juice, and anise. In a separate bowl, combine the flour and baking powder. Add this to the batter. Grease and flour three cookie sheets – the batter will create about 9 rows of dough. Put three rows onto each cookie sheet. Put in the oven for 15-20 mins. Allow the biscuits to cool.

Instructions for icing:

Combine powdered sugar, milk, vanilla, and lemon juice into a bowl, and mix with spatula until icing consistency is similar to milk. Once the biscuits are cool, drizzle icing over top of the rows and then cut the rows to the size you would like. Throw some colorful sprinkles on the top to complete the dessert!

Share

Balance and Moderation

By Lauren Kovacs

This is a Grinch every MS person faces this time of year. Even those who chose not to celebrate will be affected in some way. Even if you don’t bring that creepy “Elf of the Shelf” into your home, the season seeps into your life. Like glitter, it sticks to everything.

I have had to hand the holiday reins over to my family for most things Christmas. I did what I could. Each year, I find something else I cannot do. I am thankful my husband was always the cook and party planner guy.

I gave up helping decorate the tree or the house. I direct most of that now and point. Taking it down last year was very hard, especially telling the boys to wrap up certain ornaments for proper storage. (PS even fake candles melt in the attic no matter how well you store them.)

I do all my shopping online. I order online and if it arrives early and unwrapped, so be it. I let people know something is coming and to bag or wrap it. I can only do so much. The old saying, “it’s the thought.”

I keep a list of people and record what I bought and how much I spent. I can’t remember everything. I can budget and keep track of gifts all together on one list. I have a very big family. I can’t hang an ornament, but I can do the shopping part. That is huge.

Gift buying, angel trees, charity and such require a lot of planning. It can be a lot of work.  Most MS folks are great at planning. Embrace what you are good at.

Not being able to stand up might make you able to decorate the tree on the bottom half. Just be sure there are no glass items down there. Maybe you can still make fabulous wreaths. Maybe give those as gifts. Take a talent and latch on. Even small tasks can bring you joy during the holidays. Embrace whatever you can. Cookie taste tester is important.

Rest/nap and keep your schedule, too. It can be tempting to skip that nap or stay late at a party. Spiced eggnog is delicious, but is it worth it? Trying to walk like The Nutcracker might not be fun. Pick your battles.

We all have to live and be merry, however. Moderation is key here! Those of us that don’t eat gluten have to weigh the consequences of eating that one cookie. Is it really gonna kill you to have one cookie in celebration? One, not three or ten. I have been known as a cookie monster. I get it.

If I have been good about not eating gluten all week and I attend a party with cookies, yes, I will skip the seaweed smoothie and eat the cookie instead. Come on, live a little. I want to enjoy the holidays and if eating one piece of fudge is more fun than liver and onions, bring on the fudge, but self-control is also key.

MS folks have to balance a great deal at the holidays. Don’t deny yourself a small treat. Think of it as a “to me from me.” Our battle is long and small prizes now and then are ok.  Don’t be a glutton, but one small candy cane is not going to break the MS bank.

Share

Finding Holiday Spirit

I don’t think anyone would argue the fact that 2017 has been a pretty difficult year, to say the least. National tragedies, devastating natural disasters, political and social mayhem, and endless controversy have plagued the year and we’re not yet at its end. So it’s completely understandable if you ask yourself the question, how do I get into the holiday spirit surrounded by this mayhem? Where does one find the incentive “to be jolly” in a season that’s bookended by discord on one side, and potential hope and mystery on the other that comes with the arrival of the New Year? The answer to this can actually be found in those who surround you and the spirit that others project this time of year, you only need look for the light that cuts through the darkness.

If you want to find holiday spirit, look to children this time of year, as they carry so much light and happiness and excitement for what the holiday will bring, that it’s hard not to share in this joy with them. If religion is something of interest or that you already practice, hope can oftentimes be found through faith, especially during this season. Sometimes people just want to believe in something that’s greater than them and elicits peace. Seeing how people volunteer and donate to various causes year round but especially at the holidays also spurs feelings of joy and creates that sought after holiday spirit. It’s not always easy – life can be messy and chaotic and awful at times, but it’s looking and searching for those small signs of hope and peace that keep people moving forward and keeps holiday spirit alive. Without darkness we wouldn’t know light and how powerful it can be, so be sure to embrace it when it shines through, and let your spirit be bright.

Share

Imagine Your Happy Place

The holiday season is in full swing, and as the year comes to a close, the hectic pace can be stressful.  Running any kind of errand during the last few weeks of the year becomes an adventure as you see more people out and about trying to purchase gifts, visit family and friends, host family and friends, and purchase supplies for all of the holiday meals and get-togethers.  Everyone has their own method for dealing with the holiday season pressures and stressors, and one strategy that might be helpful at this time of year is guided imagery.

Guided imagery is a deep state of relaxation achieved by specific breathing techniques and mental images that reduce stress and feelings of anxiety – think of it as a structured day dream.  This process can help with different types of physical and emotional stress by helping the body relax as you are guided along by a recording. Some benefits of guided imagery can include:

  • Improved mood by calming, relaxing, inspiring, and motivating
  • Reduced feelings of anxiety and depression
  • Lower blood pressure

Most guided imagery is practiced using a recording of someone coaching you on your breathing and a mental image designed to reduce your stress levels. By envisioning an ideal place of relaxation (like a cabin in the woods, or a beach) in this almost meditative state, your body starts to physically relax and react as if you are actually in that place.

The more you practice guided imagery, the easier it can become to find your happy place and relax in a stressful environment, giving you a sense of control over your stress and your body’s reaction to it!

Interested in learning more about guided imagery?  Check out our cover story from the Winter/Spring 2008 edition of The Motivator, Imagine the Possibilities: An Introduction to Guided Imagery and Its Potential Benefits for Individuals with MS.

Share

Important 2018 Insurance Deadlines

As the 2017 calendar year starts coming to a close, we would like to remind everyone about two important enrollment deadlines that are approaching for 2018 health insurance coverage:

Medicare
Medicare Open Enrollment ends on December 7th for coverage that begins on January 1, 2018.

Health Insurance Marketplace
Private insurance through the Affordable Care Act’s Health Insurance Marketplace has a December 15th deadline in order to receive coverage that begins on January 1, 2018. If you do not enroll in a marketplace plan by December 15th, you cannot enroll in a plan for the rest of 2018 unless you qualify for a Special Enrollment Period.

Ensuring that you have health insurance coverage to manage the many medical expenses that can accompany MS is crucial. You can visit these sites in order to enroll or re-enroll in a health insurance plan that meets your needs.

To help you better understand the complexities of health insurance coverage, you can also visit our website section My Health Insurance Guide or call the MSAA Helpline at (800) 532-7667, ext. 154. This is an important time, so please be sure to enroll in a health insurance plan that is right for you!

Share