Explaining

[Jesmcd2]

I saw an old friend yesterday and she heard that l had MS, but didn't know what it was. So l tried to explain, and l got that glass look on her face. So l put it like this to her. I said, picture your nerves like wires coated in plastic, well my body is stripping that plastic away and leaving the wire bare, to short circuit. I think she got it then lol

[Judi4]

I think this is an excellent way of explaining this disease. I think though some people just don't understand. Nice that you got to see your friend.😊

[Jesmcd2 CommunityAmbassador in reply to Judi4]

Yes it was Judi4 , the joys of living in a small town tho, everyone knows your business lolol

[WAshingtongirl]

That was the best description I heard at an MS conference years ago. Like you, that's how I explain MS to others. I'm happy you saw and visited with an old friend. Now she better understands you, your struggles, and MS. I wouldn't be surprised if she uses your analogy to educate others. MS education is always a good thing! 💕

[Jesmcd2 CommunityAmbassador in reply to WAshingtongirl]

I hope so @tutu I had never heard it explained like that before, but it makes sense. It was a light bulb moment. I don't have those often hahaha

[jennie62]

I love that explanation! I'm going to use it!

[Jesmcd2 CommunityAmbassador in reply to jennie62]

Be my guest jennie62 lm not even sure what made me think of it. But seemed to work for her

[Good_enough]

That's the one I use. Especially with children . .. it's like going to plug the light in with damage to the coating of the cord. The light flickers, or you get a small shock...

[Good_enough]

You could also do the string of lights ... when one goes out the rest of the lights don't light . That could explain the degree of damage to the central nervous system . I hate to admit it, but coming up with analogies is fun.

Has anyone heard the one about spoons in the cupboard ? I have trouble with that one

[Jesmcd2 CommunityAmbassador in reply to Good_enough]

No what is that one Good_enough ?

[Hidden]

Jesmcd2, it's MSFighter responding back to your post. If I have to explain MS I use an analogy very similar to yours. I tell them that I own bodies immune system has marked something foreign in my nervous sy%ď stem and it starts to attack it. Picture the nervous system as a piece of wire that's insulated, like an extension cord. The immune system starts attacking the central nervous system and in the processm leaves holes in the insulatoundion that wraps around the extension cord wire. Every time there is a hole tbe wire short-circuit . At this point most of them are so bored with the science or busy they start saying things like I understand or I see when I really know they pretty much have absolutely no clue. Then we both go our separate ways as I turn my cart around, the smile slips from my face and head into the challenges MS burdens us with.

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Lol Hidden l hear you, they get that "glass" look. I know the look, I have given it myself. I had no clue what MS was before I was dx'ed. It's not widely known or promoted? It's almost like we are on a back burner or something. Idk

[TracyBelle]

I knew nothing about MS when I was diagnosed in 1999 either. I didn't know anyone who had it besides Richard Pryor. I thought it was fatal. There are no PSAs about MS and how it devastates your life. The people you hear about are all those who beat the disease with willpower. My mom used to say "so&so has MS, but she just doesn't let it stop her". I felt like I failed at MS because I didn't turn into a marathon runner or keep doing the things I love in spite of MS. The reality of the average person with MS is neither Richard Pryor or a marathon runner but we are ignored, because invisible symptoms make us seem lazy or like we "don't want it bad enough" to live our lives like healthy people.

[Jesmcd2 CommunityAmbassador in reply to TracyBelle]

So very true TracyBelle . It is fortunate that that the rich and famous can afford the best in health care. I don't begrudge them that. But for crying out loud quit bragging about it please. The real world with MS can't quite always get there :/

I can understand about your mom, my bf used to do the same thing. Grrr l finally got him to go to the right websites. You might want to try that with your mom? And see if that works?

OK for some reason it won't let me post websites Grrrrr

But ck out MSAA their site has all kind of info, from dealing with to, symptoms. And of course your mom is more than welcome here to gain,some in site

[TracyBelle]

Sadly, my mom had a stroke 12/3/14 and is in a nursing home now. I am totally responsible for getting her Medicaid to cover the $170 per day it costs to live in that hellhole. She can walk and feed herself etc., but she can't communicate. She understands everything you say to her, but the words she says in response have nothing to do with each other or the conversation. I miss her support so terribly but I can't grieve her loss because I have to constantly worry about them taking care of her properly. She made that statement when I was first diagnosed (1999), about the only person she knew with MS. I think she thought it would make me less afraid of my future. I know she didn't mean it the way it sounded- but I have never forgotten that many people see MS in that way. It is up to you to pick yourself up and keep going, because someone else was able to do that when they got MS.

The fact is the general population has no idea what it means to have MS, the loss of emotional control, constant pain and sleeplessness, the cognitive impairment, migraines and vertigo, fatigue that can't be explained and feeling like you don't recognize yourself or the way you respond to minor stressors. It would help to raise research money if people were more informed about how devastating MS is.

[WAshingtongirl in reply to TracyBelle]

I am sorry you have so much going on in your life, TracyShort. That's a lot of responsibility. Combined with your MS, I know how stressful that can be. Even though she can't communicate it, I'm sure your mother appreciates all you do for her. Bless you...💕

[Jesmcd2 CommunityAmbassador in reply to TracyBelle]

*hugs* TracyBelle l am so sorry about your mom. And lm sure she didn't understand at the time, how MS affects us all differently.

It's very true the general population doesn't understand what MS is, let alone what comes with it. I will be the 1st to tell you, l had no clue what it was. H*** l had bearly heard of it. Boy was it a wake-up call to me. And there is always a learning curve to it. You never know what systems your going to wake up with.

I think deep down people truly want to understand, they just don't know how.

We need to find a way to get the word out there more.

Any ldeas?

[TracyBelle]

The MS society needs to do some PSA/fundraising commercials. That Tecfidera commercial caused a lot of misperceptions, that just taking a pill makes your MS go away. It made MS seem like a minor problem, like heartburn or high cholesterol. It most certainly had a negative effect on the amounts of donations towards research. Hey don't they have a pill for that now? Let's donate to something else. The fact is that people have no idea what MS does to your life. Maybe we could remake the "this is your life on drugs," where they took a frying pan and destroyed a kitchen with it. This is your life with MS, and we need research funds and more ways to help people live better with MS.

ALS is so much more rare but look at all the attention it has gotten. MS is not usually fatal but the financial burden of it has made me wish it was.

[Jesmcd2 CommunityAmbassador]

I totally agree TracyBelle l feel like we are the "forgotten" Then when you bring it up, they get the "glazed" look.

The only thing l can do is be informed and pass that info on.

Ps l hate that tecfidera commercial to. They need to get rid of it. It's bs in my book grrr