What is one thing you would share with the public about LEMS?

[Price Wooldridge]

I’d share and hope they understand I can’t always accept that invitation to do something which I fear might be too much for my LEMS limitations.  For instance, I’d love to go to that golf tournament and walk the course all day with the pros.  Now, I don’t believe I could accept an invite to do that.

[Ashley]

Thanks for sharing Price! I totally understand that! It’s always nice to be invited, even if your friends know you are likely to not be able to go.

 

[Rafael Flores]

Hola!! mi hijo me comenta que lo mas difícil es que la gente entienda la parte del agotamiento y el cansancio que genera LEMS, aun cuando la gente percibe que físicamente se ve bien.

[Price Wooldridge]

Hello!! My son tells me that the most difficult thing is for people to understand the part of exhaustion and fatigue that LEMS generates, even when people perceive that they physically look good.

translation for Rafael

[Price Wooldridge]

Rafael, I agree.  Sometimes I use an explanation called “Spoon Theory”.  I think it explains how we often get fatigued and exhausted.  The theory is a normal person wakes up Every morning and has unlimited “spoons of energy”.  If they drain their spoon energy, just rest a bit, and they get more spoons.  Often times they never run low.  LEMS patients check each day to see how many spoons of energy they have for the day.  Sometimes there are lots of spoons.  Other times not very many.  And once we use those spoons of energy, there may not be more available without a lot of rest. People seem to understand this explanation.

[Romy Braunstein]

Invisible symptoms, people brush symptoms off, LEMS is grossly undiagnosed

[Ashley]

Rafael,

I completely agree with your son! The fatigue is  very hard to explain to others, especially those who are healthy. Most people don’t understand that it is more than feeling “tired.”

[Ashley]

Romy,

I agree with you! I also believe LEMS is very grossly undiagnosed.