Locked-In Syndrome.... after 17 years......

sara2005
sara2005 Online Community Member Posts: 5 Listener

Hello All, my name is Sal, in 2005, I was initially diagnosed with TM, but unfortunately the inflammation progressed and later was diagnosed with ADEM. I had the severest form of ADEM which they later named "Locked-In Syndrome." I was completely paralyzed from the jaw-down and after years and years and years of PT and struggles, I am able to walk short distances with a walker and use a manual wheelchair otherwise.

I have decided to share my story after 17 years because I didn't have the emotional and mental support in the beginning of my illness or throughout it and went through some extremely difficult situations without support so I am here to help others that are struggling mentally, physically, and emotionally get through it as well as answer any questions or need advice regarding their condition. I would like to pay it forward. You're not all alone in this! Take care. =)

Comments

  • sara2005
    sara2005 Online Community Member Posts: 5 Listener
    Hi Libby!

    Thank you for the welcoming! To answer your question, I've learned to cope with my problems through helping others. I'm so used to holding stuff in throughout my life it took me time to figure out a healthy way to let my stresses go and I found it through talking and guiding others through their problems whether it be physical, emotional, health, etc...

    I'm looking forward to sharing my experiences in hopes of showing others that there are others out they're who went through something tragic and is willing to listen. There's a huge difference when you speak with someone who has been through something tragic compared to one who hasn't and gives advice. I welcome all! =)

    Take care!


    Sal