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Geralyn,

Not sure if you were at the 2014 IARP Forensic conference in San Diego, but Kate Adamson was a speaker there.  She went through locked in syndrome back in the 90's and wrote a book about it and speaks nationally about it.  She resides in southern California and may be able to provide some resources to you.

Here is her website:  http://www.kateadamson.com/about-kate

I know from her experience and some other individuals I follow with this syndrome, the long term needs are really dependent on whether they actually come out of the "locked in syndrome."  I believe Kate was like this for 70 some days, but then was able to get her speech and most of mobility back through intensive therapies (she has some paresis).  I am following another individual (that Kate is familiar with as well) who suffered a stroke/locked in syndrome almost one year ago and is still not able to speak, communicating through a board and eye movement.  He lives in a long-term care facility because he experiences a great deal of complications that require intensive care.

Good luck.

Michele J. Albers M.S., C.R.C., L.P.C., C.L.C.P.

Senior Vocational Consultant/Life Care Planner

Vocational Diagnostics, Inc.

Phone: 608-846-9530
Fax: 888-667-9860
Email: michelea@vocationaldiagnostics.com

Website: www.vocationaldiagnostics.com

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Yes, I have seen her twice at conferences.  Thanks for reminding me of her.

Gerri Pennachio
Counseling & Rehabilitation Associates
P.O. Box 8738
Lakeland, Fl. 33806
863 687-0538