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 and hints for living with the condition
- Helpful gadgets for the home and travel
- Other organizations that offer support, sources of information and social connection
- Publications in the medical literature (that are patient friendly in terms of language and relevance)
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.
- Facebook Primary Orthostatic Tremor Group
https://www.facebook.com/groups/orthostatic.tremor/
- The National Organization for Rare Disorders (NORD) – their Rare Diseases Database provides a good description of POT
https://rarediseases.org/rare-diseases/primary-orthostatic-tremor/
- Orthostatic Tremor Foundation (USA)
https://www.orthostatictremor.org/
and they also run another Facebook site
https://www.facebook.com/orthostatictremor/
- National Tremor Foundation (UK) has quite a lot of POT information; the first link below provides a high-level description of the condition, but also see the Search box, searching for “Orthostatic Tremor” locates more than 100 pages on this website
https://tremor.org.uk/orthostatic-tremor/
they also maintain an POT Support Group, contact information can be found here
https://tremor.org.uk/support–groups/
and yet another Facebook Group, Orthostatic Tremor UK
https://www.facebook.com/groups/299934143841327
- RareConnect aims to connect rare disease patients globally; they have a Primary Orthostatic Tremor group
https://www.rareconnect.org/en/community/primary-orthostatic-tremor
- Genetic Alliance Australia – a peak umbrella group for rare genetic conditions/diseases, so rare they do not have their own support group
http://www.geneticalliance.org.au/conditions_detail.php?Primary-Orthostatic-tremor-446
- The Genetic Support Network of Victoria (may offer support, however there is nothing specific to POT, yet)
https://www.gsnv.org.au/
- The International Parkinson and Movement Disorder Society (MDS) is a professional society of clinicians, scientists, and other healthcare professionals who are interested in Parkinson’s disease and related conditions (that include POT). They have regular meetings and publish abstracts that are not too hard to read for the lay person. If you’re interested in recent POT research, use the Search box in the website below with the query “orthostatic tremor”.
https://www.mdsabstracts.org
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.