The following is a letter from Dr Bain (Department of Neurology,Charing Cross Hospital) about an exciting new project that will help in assessing the severity of OT. He has asked that you send him your information directly to the email address posted below. He will not be able to communicate with you about your OT, so it is important that you clearly list the areas or topics that you feel would be appropriate for rating Orthostatic Tremor.
He has given examples below such as "Your legs get cramp when standing". Symptoms such as this would yield information that could be placed within a scale that would indicate when OT has improved or become worse.
I hope that you will take advantage of this unique opportunity to become involved in this project.
A Clinical Rating Scale if used over time with a patient would show if there is an improvement or decline in OT symptoms. Dr Bain is looking for suggestions of the ways in which you can determine improvement or worsening of OT. When submitting your information to Dr. Bain consider what those "things" would be.
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To help understand the type of suggestions that Dr Bain is looking for, it may be easiest to finish the following sentence.Creating an Orthostatic Tremor Clinical Rating Scale
Objective:
I am currently trying to construct a scale for assessing the SEVERITY of orthostatic tremor (OT) and its EFFECTS on patients with OT. Consequently, I would greatly appreciate help from people who suffer from OT.
Rationale:
The reasons for constructing a clinical rating scale for OT are that the scale could be used to:
1.Document the severity of OT and its effect on the person with OT at clinic appointments, so that the doctor and patient with OT can be confident that a specific treatment is helping.
2.Measure the severity of OT and its effects on the patient, so that new medicines can be tested for OT and the effects measured and ideally compared with other medicines.
Assess the natural evolution of OT in each patient.
Can you help?
If from your experience with orthostatic tremor you have noticed ways in which you can tell it has got worse or better, even temporarily, please would you email or send a letter to Dr Peter Bain explaining what you have noticed. This information would be invaluable for constructing an OT Clinical Rating Scale which we would then test for reliability and validity.
Examples:
For example, you may have noticed that:
1.You cannot stand still for so long when your OT is severe.
2.Your legs get cramp when standing.
3.Your hands might shake as well.
PLEASE send in your suggestions as every piece of information is in valuable for creating an OT clinical Rating Scale.
Please write to or Email Dr Peter Bain at:
Dr Peter Bain
Department of Neurology
Charing Cross Hospital
London W6 8RF
Email: p.bain@imperial.ac.uk
Thank you for your help with this project.
Yours faithfully
Dr Peter Bain MA MD FRCP
Consultant Neurologist
When my OT is very severe (or improved) .........
examples:
1.You cannot stand still for so long when your OT is severe.
2.Your legs get cramp when standing.
3.Your hands might shake as well.
4.......