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198419 tn?1360242356

We need an MS SIMULATOR!

Well, WE don't really need one - but the non-MSers need one.
Many of us MSers, Limbolanders, and Differential Dxers deal with invisible MS related problems!

Wouldn't it be nice it there were a Simulator?

   Ok -  If I were to make one (I can see it now)....you stand in it, and on the inside your legs feel like 100 lbs, it's hard to maintain balance (the floor can be tilted, lol)
- you have to look through blurry, or jerky hard to focus glasses, things are going on around you at a very normal pace, but you can't keep up because not only can't you concentrate, you can't move so good to get ahold of yourself, and then, wham warm water runs down the person in the simulator's leg for no good reason. But, all the while, everyone that looks at the person in the simulator thinks they are perfect!  They can't see! They can't feel it!

Aaaah, where are out engineers when we need em. I'll draw it, if someone will build it!!!!!

(((hugs)))
-shell
25 Responses
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1660929 tn?1319758789
Gr8 idea Shell! Lol! Love the acronym suppermum...but doh 4get the itch too. That itch that u can't seem to satisfy.
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Proposed T.I.M.S.S. E.D.D.P.M.S

(Temporary, Invasive, Multiple, Sclerosis, Simulated, Experience, Designed, & Developed, by People with Multiple Sclerosis)  


This MS simulator idea is intreging, stage one of human trials will commense once the device flaws are tweeked, it is not acceptable for the suit to be removed on request, it must be impossible to remove until the wearer has accepted their reality. I see your visionary idealisation as an all in one suit, from head to toes. In built sections of the suit are weighted, but the weights change, so the longer you wear the suit the heavier sections become. These weighted sections could shift suddenly to one side of the body, to demonstrate imbalance.

I expect it to have rumble and tazer contact points within, connected to the wearers skin so that they too can experience the joy of intermittent zaps on a body part or the sheer pleasure of navigating a limb that wont stop trembling as you perform daily tasks. Must not forget to include the necessary simulated muscle spasms, just enough to drive them semi insane, must not render the wearer to too much unnecessary reality. Best to include tasks that highlight daily life, good examples would be trying to consume soup and typing.

I'm thinking it wouldn't be too difficult to incorporate sensory deprevation, bands that surround their arm and ribs. Each tightening to the point of recognised numbness, allowing return of blood flow to simulate pins and needles. Each band opperating independantly to the others, the rib banding should at times invisibly tighten so the wearer doesn't become overly aware of the preasure being applied to their rib cage, just enough to be uncomfortable. This banding could on occationally pull tight enough to shock and inhibit exhailation but not render the wearer unconcious.  

The suit would need to have shifting visual accurity, focus needs to be interupted by images becoming double and blurring out in one eye, distance of objects needs to change and appear slightly off centre, inorder for the wearer to try to grasp an object and miss target. It would be helpful if on occation the suit simulated a spasm at the same time so that the wearer can sometimes miss their intended target or knock it over.

I think a sensation on the back of the knee maybe enough to recreate the sudden bendy knee feeling though simulating cog fog may require more creativity. It maybe enough to have conversation piped into the suit, this conversation would need to be slightly disconnected to generate confusion in their comprehention, making the wearer slightly uncomfortable in their responses. Whilst the wearer is responding to a question they bearly understood, there needs to be an unexpected interuption, to distract their thoughts so that they struggle to get back to what they were saying.

I've contacted the relivant authorities and unfortunately we are not able to get FDA approval for the 'energy removal devise', apparently inserting a drainage tube directly into the wearer, borders on the inhumane though they have approved the tazer which we will need to adapt to form a dual purpose and simulate an annoying vibration.

The resent unfortuanate demonstration of the prototype is a prime example of the areas that need to be tweeked. It is not acceptable for the heating eliment to become so hot that the wearer is convinced their hair is on fire. It is also noted that the cooling eliment when not at its intended sub zero temperature will leak, although this is an unintended developement, it has established the strange sensation of cold water intermittently dripping, so the wearer is constantly checking to see if they have wet them selves, Well done!

It has been noted by one tester that the combination of electical shocks and the sensation of dripping water on the body can cause intermittent memory loss and also sort out the suit. It would be prudent to find the exact eliment that is causing the short curcuit so that we can include this experience with out damaging the suit for future use.

The tester on this occation is placated by the giant bucket of ice cream and promise that we wont do this to him again without his permission, so lets make it happen people!

Oh can we please work on this projects name, its is a bit of a mouthful.        
Helpful - 0
Avatar universal
One thing I think should be added is a handful of caffeine patches (like a nicotine patch) that make your insides feel like you are having an internal earthquake.  Of course, that may just be me....  ;)
Helpful - 0
572651 tn?1530999357
Maybe the fun engineers with Disney World can add some of their magic  to the existing simulator.  We were in the park last week on vacation and two different 3-D  theater experiences had points in the show when the audience was doused with tiny droplets of very cold water.  Each time it hurt like you-know-what as it hit my exposed skin- it was the worse feeling pin p rick I could imagine.  It was at least an 8 on a scale of 10 for pain.

These Disney folks could certainly come up with another fun thing or two to throw at the unsuspecting.

Helpful - 0
1045086 tn?1332126422
I just saw your post when my own went up DV.  (I needed some tear time along the way so it took a bit of time to finish.)  

Thank you so much for sharing!!

Mary
Helpful - 0
1045086 tn?1332126422
Somehow, I'm hearing my mother declaring firmly to one of her children (doesn't matter which one), "Someday I hope you have 12 kids (pause) and every... single... blasted... one of them (pause) is... Just!  Like!  YOU! "  

I think she may have been having simulator design fantasies of her own that day and I've heard since that other mothers thought THEY were the ones responsible for the design.  I'm sure we kids looked at her with clueless faces because even today (after being in that place as a mother myself) I smile when I think of how funny her 'mother's curse' sounded to us.

You know, I guess everyone feels unappreciated about something---who they are, what they've lost, the limitations they live with, how hard their job is, how much pain they have, how little they earn, how much responsibility they carry, the suffering they witness, or whatever it may be that makes any given person feel invisible.

Just last week I told my husband I wished I could arrange for him to live in my body for just part of a day.  Yesterday my daughter told me about a July 4th pool party they had at the house.  Her SIL came and so did her spouse.  He usually skips these functions because MS has him confined to a motorized wheelchair.  

After 5 hours of outside summer temps the wife could see from the pool that her DH was fading under the umbrella.  She asked if he was ready to go.  He said, "Yes, but you're not, are you?"  She admitted she wasn't but offered to go anyway.  He told her it was alright, he could last a while longer.  Then he turned to my daughter and said, "It's so good to see her enjoying herself for a change that I'll last as long as I need to."

Today I've remembered I don't want to have to try out anyone else's moccasins.

I make no judgments with my story and I don't want to put the kibosh on anyone else's desire to add to the simulator design.  This is just where I am at this moment today.  I've got MS.  Everything could be different an hour from now.

Mary
Helpful - 0
382218 tn?1341181487
This does exist!  It was developed by a company called Human Condition and is called the Step Inside MS Simulator.

At this year's event, I had made the suggestion to the Nancy Davis foundation that they try to have it on display during thr Race to Erase MS gala next year.  Let the fancy celebrities experience symptoms of the disease they are helping raise money to cure, maybe cause them to shell out more dough to know how bad one can feel with MS.


http://www.hcxdesign.com/multiple-sclerosis-simulator/

"Background
There are over 400,000 thousand people in the US currently diagnosed with Multiple Sclerosis (MS). Considered an ‘invisible’ disease, its subjective sensory symptoms vary widely from patient to patient and are often entirely undetectable, even with an MRI. Diagnosing this degenerative autoimmune disorder can take up to five years. The critical process relies almost entirely on a crucial understanding between the doctor and the patient.

"I have studied MS and treated patients for 35 years, but Step Inside MS has taken my understanding to a new level," explained neurologist, Dr. David W. Brandes, Medical Director of the Northridge Multiple Sclerosis Center, as well as Assistant Clinical Professor of Neurology at the University of California, Los Angeles.

Our end client wanted to take a thought leadership role in MS by presenting physicians with an opportunity to step inside the lives of MS patients.

Objectives
To develop simulations for both the early and late stage patient experiences.
To close the gap between doctors and patients, and create a more accurate, universal awareness of the disease.
To provide medical professionals the understanding they need to treat MS earlier, and more aggressively.
Solution
The Step Inside MS Simulation demonstrates the wide array of early and late stage MS symptoms. In the early stage simulation, participating doctors walk in synchronicity with video media and actively trip without falling, experience numbness and tingling of their hands, and suffer from the inability to perform common tasks such as picking up a cup or typing an email. In the late stage simulation, they experience extreme heat sensitivity, increased loss of motor control, and optical neuritis.

These realistic symptomatic effects are created through the use of state of art technologies, such as custom designed gloves, feedback enabled multi-track treadmills, binaural audio systems, HD video displays, and infrared heating elements.

Touring the US since its 2007 debut at the American Academy of Neurology, the MS Simulation continues to act as an awareness and advocacy tool for Multiple Sclerosis. It has been featured on the front page of The Boston Globe and gains wide press both online and in print."



Helpful - 0
Avatar universal
Just as an aside---

Last year I went on a Baltic Sea cruise, and one day the sea was very rough, even for a big cruise ship. Passengers in the hallway were lurching around and grabbing for railings on the stairs.

I thought, 'Welcome to my world,' and even said that to a few of my friends/cruisemates. They acted amazed for maybe 10 seconds, and immediately forgot all about it.

Such is life.

ess
Helpful - 0
900662 tn?1469390305
sorry typo
                      above should have read,

    then  they start become nice, loving people .   Oh well we can only dream..




I'm  bad
johnniebear
Helpful - 0
900662 tn?1469390305
How  about one those   phaser from Star Trek?  

I can zap the bathroom door when I'm out in public and change the bath room door in a revolving door,  cause the chances are pretty darn good that when I get out the door I have just turn around and go back in a few times..

The Phaser also doubles as politeness weapon- just aim and shoot & all those darn jerks out in public ,  then start become nice, loving people .   Oh well we can only dream..


Good topic
thx
Johnnibear..
Helpful - 0
1382889 tn?1505071193
OMG BOB, you are a riot!!!!!!

You see my husband is an engineer so I know the type well Shell. Their minds are wired compeletly differently than ours. Their sense of humor is slow to warm up but once they get going, they will have you laughing so hard it hurts.

Way to go Bob!~  I think you win the prize for most creative. The visual is priceless!

Julie
Helpful - 0
1453990 tn?1329231426
I have very thick skin and I was thinking out the "Old Age (geriatric) Simulation Suit" that was shown on Today earlier in the year from MIT.  I was actually thinking of a suit that  suit that jerked your leg or arm and then stopped working and dropped you to the ground would be quite difficult :-)

How I could poke an ice pick in the back of someone eye for three days would be a problem.  I'm not sure how I can do that without causing real damage.  

Yes, it would be great to show/teach/demonstrate to People without MS what People with MS deal with somewhere between once in a while to every day.  I think you are right, an "Emergency Stop Button" would have to be high on the list.  Most People without MS would be driven MAD by such a simulation (actually, it is technically a stimulation.)

What are the chances that we could line up the neurologists to be the first ones to try it out?

Bob
Helpful - 0
1045086 tn?1332126422
Sure.
Fine.
Blame me.  I can take it.  It happens all the time.  I've got lots of practice.

Actually, Bob assurred me 'round about last October that the docs had thickened up his skin and I sould feel free to joke with him.  (To bring new members up to speed, I think this had to do with mentioning that Bob's Halloween costume eyes were a revile match to one of HVAC's dogs.  Polly is a dalmation with huge black spots covering her eyes.)  Dang, I hope I have something in here right.

Of this, I am sure.  COBOB has a sense of humor and all this is my fault.

Amen.
Mary
Helpful - 0
198419 tn?1360242356
Believe it or not, Mary even though we're having fun with it - I've given this a lot of thought through the years.

So Bob, look out we'll all claim designer rights, lol Education and cash all at the same time  - win-win sitch.

And, sorry for having fun at your expense - Mary started it, hahah


Helpful - 0
1045086 tn?1332126422
Good idea Shell but I hope you got the legal rights before putting your idea out here.  It seems to me the virtual drawing and spec writing services you offered to do are being hijacked by an engineer of reality world.

Contrary to the impression you received, I believe COBOB is quite taken by this idea and is having trouble distracting his thoughts from the constant contemplation of the endless intricate design features required.  Since he is likely to take over design duties you may as well name him a partner and start looking for someone to manage construction.

I could certainly be wrong but I believe Bob is joining in on the fun in his own (engineer) way.

Personally, I recommend you include a timer and an emergency STOP! button.  Nobody should have to tolerate this experience endlessly (even though some of us do and the rest of us fear it).

Mary
Helpful - 0
198419 tn?1360242356
Gotcha - sorry Bob read you wrong - you write up the specs and make sure we can mix them around at any given moment

What else?
Helpful - 0
1382889 tn?1505071193
Bob, loving that the effects can change at any time during the simulation and hit you with a new combo!

Shell, that is Bob's humor, go with it.

Julie
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198419 tn?1360242356
hahaha! These are the best - yupper, think we can work on the zaps, and such.

Why Bob, - don't be a downer, though this was writtine all in good fun, I think even you'd be surprised by what can and is simulated :)

-shell
Helpful - 0
1382889 tn?1505071193
How about we make them walk over some hot coals?!   They can get feet on fire and walking over rocks sensation all in one fell swoop.

Julie
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1453990 tn?1329231426
Too many different effects and disabilities from MS.  

Direct Sensory - tinnitus, blindness, paraesthesias, synesthesias, dysesthesias
Indirect Sensory - spasticity
Motor - limb heaviness, paralysis, clonus, myoclonus, dysphagia, etc.
Mixed effect - Seizure Disorders, mixed cognitive effects, fatigue and lassitude, problem sleeping, CNS pain disorders, etc.

Just trying to write the requirements and specifications for that type pf simulator would be a major undertaking.  Oh, and then the the effects can change at any time during the simulation and hit you with a new combination at every relapse.

Bob

Helpful - 0
Avatar universal
AMO
hahahahahaha!!!! :)

hoow bout when they inside this  simulator try too explain what's going on, voices on a loud speaker saying  "there's not enough lesions., go home and you'llll be ok"
then when you try explaining harder it says " this is all in your head"..."this is all in your head" LOL
Helpful - 0
Avatar universal
Great idea, Shell, but also add a pitcher of cold water being poured down their backs and electric shocks everywhere....hahahahaha

Oh, and make them try to carry on a conversation with a mouth full of marbles......heehee

Boy, we're mean, aren't we?
Helpful - 0
198419 tn?1360242356
hahahahaha

Yes! It will now sit atop a sway bar! And, will feature the straight jacket (orange of course) w/pull cord, lol  And, the automated voice that tells them how fab the look the moment their temp rises, ahaha  These are the best -

what else should it be equipped with???? It should be hot in their right?
Helpful - 0
1382889 tn?1505071193
Thanks for the laugh girls.

How about putting  an invisible vice around their rib cage and putting the setting on max?  When they complain we can say, "But you look so good!".

Julie
Helpful - 0
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