An ‘MS House’ That Lets You Walk in My Shoes

by Ed Tobias | June 2, 2017

(Photo by Andreea Antonovici)

A few months ago, I wrote about a bicycle that mimics the symptoms of multiple sclerosis. Now, I’ve discovered that there’s an “MS House” that allows a healthy person to experience some of what life is like for someone who lives with MS.

People walking through the MS House will be able to see and feel things from a different, and often difficult, perspective. For a short while, as they walk through guided by headset audio, they can better understand what multiple sclerosis is all about.

The living room

(Photo by Andreea Antonovici)

A TV displaying half-definition pictures is used to illustrate vision problems. An armchair that’s set very low to the floor demonstrates the difficulty of getting up from a chair due to leg strength issues and fatigue. A sign explains that MS fatigue is like sitting down, and you’re so tired that you can’t get up again. An inflatable mattress is on the floor to simulate how someone with MS has difficulty balancing while walking and may be very wobbly.

The kitchen

A heavy coffee mug and an unbalanced tray are used to demonstrate fatigue symptoms.

The study room

(Photo by Andreea Antonovici)

A “jumbled” computer keyboard simulates how cognitive problems may make it difficult to find the correct word to use when typing. These problems are also illustrated by an “Alice in Wonderland” book where the same page is read over and over again because, by the end of the page, the reader has already forgotten what he read. Ankle weights appear under a sign that says “Don’t drag your feet,” and then describes how people with MS can feel as if they’re walking through sand.

The bathroom

An infrared heater and a blurry mirror are used to simulate how a hot shower or weather can flare MS symptoms.

On display

The MS House was created under the sponsorship of the European Multiple Sclerosis Platform. It was displayed to mark World MS Day at a meeting of the European Parliament in Brussels, May 30–June 1. It would be nice to find a way to put it on a worldwide tour to broaden everyone’s understanding of what those of us with MS experience in our lives.

You’re invited to browse through my personal blog: www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Victoria Stanger

Very insightful for those around me. Mane they can understand a little.

Sharon Ferris

You need to add heat and put it really hi or a hot suit so people can see how some of us stay hot 24 seven and the nerve pain and fire from the nerves as my body is on fire 24 seven but I love this idea I know a few people I would send through the house

Ed Tobias

Hi Sharon,

The bathroom of this house includes a heater that makes it very warm, to demonstrate the negative impact of heat on us. But your suggestion is a good one about finding ways to demonstrate that heat. (I'm not so sure it would be a good idea to demonstrate pain, however. :-) ).

Diana

Oh yes, I know exactly who I'd make go through this house too, my so called brother who doesn't believe I have MS, calls me a liar about it. He didn't see me stuck on the sofa for 2 days sitting in my own urine and poo because I was too scared to tell my husband I couldn't get up. Spent 4 weeks in hospital with burns on my thighs from urine, put on morphine because of the pain. It was a relapse that my local MS said it was a false relapse. She too is just as useless as my ex-brother.

Cairi

So. Not sure why I would want others to experience what I am. Just sayin'

Karen

You must be lucky and have understanding people around you. Unfortunately, there are many of us out there that would like to give a few people a clue!

Collette

Anything that can describe the challenges and discomfort is useful for me to understand that what I experience is not unique to me. Also, the descriptions here does a more effective job of enabling me to communicating my situation to others.

charles

the floor need to be shifting and people need to somehow have their short term memory impaired so that they can't remember what they were just talking about. slippery shoes would also help. ms is a deathtrap.

Julie Bright

How about something they can walk across to simulate the pins and needles feeling in our feet? Oh and really snug stocking to simulate that numbness too? (our feet)

Brenda Mathews

It' time they come up with a cure. God knows they've had plenty of time. It's all about the money they pocket at the expense of the MS patient!!

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