Primary Orthostatic Tremor Australia

For, and by, those dealing with POT

Support

Information about Primary Orthostatic Tremor (POT) can be hard to find, especially practical hints to support POTers 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 POT (updated Sep 2023) based on the personal experiences of many people diagnosed with POT.  These notes may help you explain POT to your family, friends and maybe even a health professional who’s not familiar with POT.  For those for whom English is not their first language, this document is vertaald in het Nederlands and  ha sido traducido al español. 

Susie has also produced a companion document aimed at health professionals, many of whom know no more about POT than your family!

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 POT.  This is often quoted in the social media forums and we’re including the document in our website with permission.  Thank you Rena.

Ruth Hochheiser has been very active in campaigning to raise the awareness of POT, especially in the USA. An article Orthostatic Tremor: Learn About the Need for Research Into This Rare Movement Disorder was published by the American Brain Foundation in June 2023. The article details her physical and emotional journey with POT. Thank you Ruth.

Margaret Harvey has written a novella Living with Tremor that describes her journey with ET and OT. It can be downloaded from this post on Facebook, is an excellent read and something we can all relate to. Thank you Margaret for sharing.

Heather Mylne has written a short poem entitled “Shaky Pants” describing her life with POT. You can read it here. Thank you Heather for brightening our day.

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.