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

sara2005

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.

Libby_Alumni

Good morning @sara2005

Welcome to the community and thank you for sharing a little bit about yourself and your experiences. It sounds as if you've had quite a challenging time, but are now on the other side of it, which is amazing to hear. 

I think that is very common for a lot of individuals going through challenging situations, where they unfortunately, don't necessarily have the right emotional support available. It's wonderful that you've joined us and you've learnt from your experiences, and therefore, want to help others . Do you feel as though you have enough support today? 

The community is a very welcoming place and I think the coffee lounge would be a great place for you to start, as it's a place where you can meet new friends and play some fun games. We also have a variety of categories that you can explore, and find out more information about specific topics.

If you have any further questions or queries, then please just let us know

Libby

sara2005

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