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 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

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.

• 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 OT
  https://rarediseases.org/rare-diseases/primary-orthostatic-tremor/
   
• Orthostatic Tremor Foundation (USA)
  http://orthostatictremor.org/
  and they also run another Facebook site
  https://www.facebook.com/orthostatictremor/
   
• National Tremor Foundation (UK) has quite a lot of OT 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 OT, 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 OT research, use the Search box in the website below with the query “orthostatic tremor”.
  https://www.mdsabstracts.org