Susan’s Advice for Caregivers:

Link up with a support group such as JNF where you can find others who can relate to what you’re going through.  The people in these groups are so helpful and supportive and help provide guidance, provide glimpse into reality and provide hope.

TRUST YOUR GUT!  If you feel you need a second opinion, need to challenge someone, etc, trust your gut and advocate!  You know your loved one best!

I would encourage families dealing with any form of AVM family entity, especially if the diagnosis is new, to make a notebook or file on your phone or ipad, and write down appointments:  questions, answers, notes, with whom, medicines, med changes, symptoms, etc. to help keep track of everything.  It’s all too much to remember the details, especially as time goes on.  If you have it in a notebook, you can better track symptoms and appointments, who said what, etc. as well as refer back to it over time which can be incredibly helpful.