Information about (Primary) Orthostatic Tremor (OT) can be hard to find, especially practical hints to support OTers and their family and friends.

On this page we’ve tried to collect pointers to information that others have found helpful.

Personal Experiences

Susie Beard one of the Adminstrators of the Facebook Group has compiled a lay-person’s summary of OT based on the personal experiences of many people diagnosed with OT.  These notes may help you explain OT to your family, friends and maybe even a health professional who’s not familiar with OT.  For those for whom English is not their first language, this document is vertaald in het Nederlands and  ha sido traducido al español.  Thank you Susie for allowing us to reproduce these documents here.

Also on Facebook, Rena Lou has compiled an excellent summary of her journey with OT.  This is often quoted in the social media forums and we’re including the document in our website with permission.  Thank you Rena.

Other Organizations and Sources of Information

The links below may be useful for those with an interest in (Primary) Orthostatic Tremor.  They provide sources of information, contact for support groups, research organizations, social connection, etc.