Support

Information about 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 (updated Sep 2023) 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

Susie has also produced a companion document aimed at health professionals, many of whom know no more about OT 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 OT.  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 OT, 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 OT. 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 OT. You can read it here. Thank you Heather for brightening our day.

Kim Fowler wrote an article for Rare Disease Day outlining her personal journey with OT. You can read it here. Thank you Kim, so many people in the Facebook Group have commented on how your words resonate with their own experiences.

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

Medical Publications

Lessons I have learned from my patients: everyday life with primary orthostatic tremor, Journal of Clinical Movement Disorders, 2017, vol 4, no 1.

An interesting read that validates many of the experiences we have on a regular basis.