The Orthostatic Tremor Forum (archive)

Hello, we are new to this website.
We live in the UK, in Wiltshire and would very much like to hear from anyone who lives near us who suffers from OT so we can compare notes. We have never met anyone outside our own family who suffers from it.
I write on behalf of my husband, an arable farmer. He is 59 and has had OT for about 10 years. His mother had it too, much more severely and was wheelchair bound and labelled with Parkinsons Disease for 10 years. She died in 2011.
My husband Charlie is good at walking although he has a wide gait. It's standing that is his problem and because of this he is having to contract out his farm as the hard work is now too difficult for him.
Has anyone heard of these Balance Restoring Insoles from the Wyss Institute at Harvard? It's an interesting short article and I will put the link below. Charlie's specialist, Professor Peter Bain at the Cromwell Hospital in London knows about them but says there is no real way of accessing them. They sound terrific and I would love to hear from anyone who has any experience of them.
Do get in touch if you can help. The link is http://wyss.harvard.edu/viewpage/432.
Best wishes!
Lucy

Hi Lucy

Thank you for joining the forum. I received a response from Wyss Institute at Harvard about the Balance Restoring Insoles. The product is not yet available to purchase, and unfortunately it has not yet been tested on anyone with OT.

Best regards to you and Charlie,

Yes I think this is the response that our doctor received as well. Rather frustrating, he thinks it will really help, I don't think it matters that it hasn't been tested with an OT patient. Thanks for trying, I am not going to give up and will let you know if I have any success.
Best wishes
Lucy

Hi Lucy

It appears that there is a research study in progress funded by the National MS Society to study this type of insole, so this product may eventually become a "real" product. Whether it has any benefit to someone with OT is unknown:

In this study, a team of researchers at the University of Massachusetts Amherst will evaluate the sensation in patients’ feet soles (analyzing two different areas) and compare their results with healthy subjects. The analysis will be performed while sitting and standing up to determine how this impacts patients’ balance. The project introduces a new focus, since the majority of previous reports only determine patients’ parameters while lying down. Introducing a new standing parameter will allow determining how weight bearing impacts MS patients’ balance.

The authors are recruiting both patients with Multiple Sclerosis and healthy subjects aged between 21 and 65 years old. Notably, all the participants have to be able to walk and stand up without assistance. Participants’ ability to be enrolled in the study will be determine by different tests including, muscle strength and the 25-foot walk; additionally, patients will be analyzed for skin sensation (pressure and vibration), standing balance and posture evaluation....

Link to Research Study article

I wish someone with OT could try them out. It sounds interesting. I'm more and more convinced this has something to do with balance or vision.