Hiya
Hope everybody is as well as can be.
Last year - some of you may remember - I did a college presentation on MS and raised some money for the MS society. This year I plan to do another one and I need some tips!
Last year I did a few practical demonstrations to show effects of symptoms, but now I’d like to do some more.
I thought I’d ask here, especially something to demonstrate fatigue!
Just to add last year I gave the audience gloves and asked them to write and turn pages to demonstrate loss of sensation, it was something that stood out in the presentation and was remembered. But the other symptoms are some what harder to explain so I’m searching for alternatives.
Thanks in advance!
Zak
Get them to put their feet on mobile phones set to vibrate when you ring them!
Or fill their socks/tights with concrete, thinking back that might be a daft idea but I’m sure lots & lots of pebbles would work just aswell! Then try walking in them
Get them to walk in concrete filled boots and nettle filled trouser legs!
I don’t know if you can “demonstrate” fatigue, as short of actually falling asleep, it’s hard enough to demonstrate when you’ve got it!
You can ask them to imagine it though. “You’ve got jetlag AND a hangover. Now you’ve got to do the monthly grocery shop!” Or: “You really overdid it at the gym yesterday. Now you think you might be going down with flu’. You’ve got to pick up three kids from school, get them home, and cook the dinner.”
Tina
If it were possible I’d get them to walk on a tightrope as that’s how I feel, I can’t even wear my ‘hotter’ flat shoes these days without feeling like I’m wearing high heels. Or perhaps walking in a sand dune, not very practical!
I thought of all the suggestions - thanks! - how about wellington boots with sand inside? How does that sound, I think those materials would be easily accessible.
Look up “spoon theory” in google. It was invented by someone with lupus who wanted to explain to a friend how it really felt to live with the condition. I feel it relates to MS as well.
I can’t remember it exactly but it talks about only having 10 spoons of energy and how different activities use up spoons and when they’re gone they’re gone!
Hi Zak,what about a bit of Optic Neuritis by smearing Vaseline on the lenses of safety glasses/goggles.'Praps a practice beforehand to get the amount of vaseline just right.You wouldn’t want to over state the case would you?
Horrific feet,a bit like mine…A selection of shoes which you put on people so they are a couple of sizes too small. A few Lentils in the shoes of any of the audience, then make them walk around until they don’t want to anymore.
Then tell them,“Just stay like that for the rest of your life,and it will get worse,never really improving”
Finally,but tell them at the start to imagine their worst hangover and waking up late on the morning of their most important interview.An inkling towards the stress we can suffer that can come from nowhere about anything.
Can I be there please and I’ll bring a blowtorch and a pair of pliars.The sight of them will get pulses racing without even ‘cracking the gas’
Good luck,
Wb
What about telling them to drink 3 pints of water in one go and then sitting on a bus journey!..when all you’ve really had is a cup of tea and need to pee every 5 mins!..not funny but quite a reality!.. Or strapping lead weights to your leg and trying to walk!!..got me thinking of trying these put on friends and family lol!!..good luck with it…Emma
You might want to check this web site as one or two of the simulations are relevant for visual symptoms ://www.thevisioncommunity.com/ (you have to scroll down to the bottom of the screen to find the simulations). Also, use of goggles with vaseline smeared lenses? There are other sites which feature similar material. Fatigue - I know that some kind of intense muscle strain like strenuous arm wrestling half a dozen times with both arms will certainly lead to fatigued muscles, for example if afterwards you try to get out of an armchair by pushing with your arms, chances are you will feel greatly enfeebled and struggle to get up.
A basic scientific approach; in the days when motorists would nurse ailing car batteries what would they do on cold mornings to get their car started? Our energy resources and availability are identical to that battery! Good wishes.
Most people have had flu. Ask them to think back to when they were ill with flu. To remember how all they wanted to do was sleep. How even going to the bathroom was an effort. How shaky and weak they felt. How they would want something to eat but could only be bothered to make breakfast cereal or toast. How even talking on the phone was way too much effort. Tell them that’s what MS fatigue feels like.
Also, for numbness, to remember last time they had a filling at dentist… or woke up with a numb arm or leg from lying on it. Ask them to imagine having that all the time.
You probably won’t be able to get hold of one of these but I once tried a recliner chair that had a massage function built in. Turned it on and it was exactly how my body feels all the time… whole thing was vibrating… only magnified because I had the feeling in my body and the damn vibration from chair!
Good luck with it… I think you have some great suggestions on here… and the vaseline smeared lenses is brilliant!
Pat x
What about gettting hold of a manual wheelchair…or an electric one. When my hubby couldnt walk due to arthritis pain in his feet…he borrowed my wheelie for half an hour.
He went into kitchen to put the kettle on and rinse a cup…he soon got out of it, yelling, How the chuff do you manage in this? I cant get near enough to turn the tap on!
Could be an interesting exercise, no?
pollxx
I think Poll’s suggestion is great.
Also might be worth taking it in turns to go out in street being pushed in manual wheelchair. That first time is very strange feeling… that feeling of not being in control and the self-conscious feeling of it. Has to be experienced to understand.
Pat x
I’ve just remembered a clever thing that an ex bird had used at a couple of meetings she chaired. This was for giving people a hint at what Autism feels like,but it does apply to us sometimes
Move the chairs so they all face the wrong way,ie not towards the front.Write two things on the board,and these must be strictly adhered to from the moment they walk in.
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No talking
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Donot move the furniture.
‘Brain Fog’ or whatever you call it,but confusion that you aren’t capable of thinking a way out of.
She let them flounder for 4-5 minutes, then resumed ‘normal service’.
Dunno if this is of any use,but it’d be fun to watch them squirm,
Wb
I got the book about MS for my 5 year old and it says about sitting on one leg for a bit to cause pins and needles then to ry standing and walking on it… i know its not to do with fatigue but thought it might be an easy one to do as i think llots of us have pins and needles myself included
Kate x
Wow there are some really cracking suggestions here. One to add - a lot of us have one much weaker side (I certainly do) so could you put weights on arm and legs on one side - this will make them unbalanced but also simulate thte draggy leg and arms feeling.
Tens machines give nice pins and needle sensation
Cover the floor with thick sponge to walk on to throw the balance