Documentary???
 

Hi all my fellow mGers.. I hope this finds you well and strong. Need some opinions on my newest lightbulb.

I have an idea to use a volunteer, possibly my husband or a family member, and use velcrow weights, and have them go about my day. Giving them prompts on when to take meds, take certain weights off and on, getting the unfortunate side effects of Mestinon, and film it. Then getting an interview about how it felt compared to what they'd imagined watching me struggle, ect. Not exactly sure what it would accomplish, other than showing healthy people another healthy person in our shoes. Might bring some understanding to the world?
What do you guys think?
Thanks for reading,
Jess

If you can find someone to do it, it could be a wonderful experiment. I would love to see how it turns out and what the 'subject' takes away from the experience.

Anything that will convey the weakness we live with is great in my book! I was trying to explain how mg affects my muscles to a new acquaintence and used the following as an example:

If you tell your arm to move, imagine 100 strong men moving your arm for you. Now, I tell my arm to make the same motion, but only 10 weak men come to help me move my arm. Because there are so few of them and they are weak to begin with, they get tired very quickly and need to rest.

It seemed to help them understand how my muscles work compared to theirs and I overheard them explaining it someone else the same way. Hope this helps!

I think I am going to try this (if you don't mind!) I am so sick of listening to some family members say "oh its just general muscle weakness; your not even trying".

I held my baby niece briefly a while ago. I remarked that the experience made me realize my MG wasn't as improved as I'd thought. Several people said, "Oh, but she's such a heavy baby!" That made me realize that not only do other people not get it, but that I haven't described it properly, even to myself. The experience was different from just the tired arms anyone would get from holding a nice fat baby. But I'm not sure I can express just how.

Abby

I just tell everyone to think about what they feel like after they've REALLY exerted themselves - running, lifting stuff, etc. When you see a marathon runner at the end of their race, and so many of them just collapse....

Then I tell them that's how I feel after walking to the front door some days - the rubbery-feeling legs, the "I have to sit down RIGHT NOW" sensation, etc.

And I let them know that the reason THEY feel like that is because all of their Acetylcholine has been used up. Then I remind them that a person with MG "uses up" all of their acetylcholine really fast because their nerve receptors can't pull enough of it in (and all the exercise in the world isn't going to change that - it will actually kill someone with MG).

It's kind of like being 90 years old.....

Go for it girl! They make videos for everything else, why not something that would help bring attention to MG!