About our Group
We are a patient-led initiative linked to the Orthostatic Tremor UK Support Group in association with the National Tremor Foundation.
This website is compiled by registered members, where privacy is respected and all data is protection-compliant according to the 2018 Data Protection Act. We are a non-profit making group managed by our volunteer members.
What is Orthostatic Tremor?
The term Primary Orthostatic Tremor is intended to describe the basic or pure condition.
Medically known as Orthostatic Tremor (O.T.), it is a progressive neurological movement disorder which is non-life threatening, but once diagnosed it is unremitting. It incurs a change in lifestyle, irrespective of age or gender. Initially O.T. gives a feeling of unsteadiness and a fear of falling, then the onset of shaking affecting the legs while standing unsupported.
It is recognised by a high-frequency leg tremor between 13Hz and 18Hz*, which makes it difficult to detect visually. This makes it a ‘Hidden Disability‘, unlike the more known neurological conditions, such as Parkinson’s 3Hz—6Hz or Essential Tremor 3Hz—7Hz, which are clearly visible.
*Hz (short for Hertz) is a measure of frequency per second
Sometimes the condition is called ‘Shaky Leg Syndrome’, or ‘Helicopter Legs’
This YouTube video gives a clear and concise introduction to the condition. It is presented by Dr Simon Freilich, Consultant in Clinical Neurophysiology.
You are not alone
Orthostatic Tremor is a progressive, unremitting neurological condition. Due to its rarity, it is not often recognised, therefore frequently misdiagnosed and misunderstood.
The Orthostatic Tremor UK Support Group endeavours to raise awareness of this debilitating condition and offer help, friendship and understanding.
