Submitted by kenj on Fri, 12 Apr 2019 – 05:36

Following the viewing of Diego’s presentation at the 2019 Melbourne Conference, the audience prepared a list of questions for Diego that were asked and answered by email.

Here is the list of questions and answers:

Q: There are lots of OT patients at the Conference, but we’re a long way from Nebraska.  Are there any ways in which we could assist your research efforts?

A: We appreciate the interest in participating. And yes, they can participate in some of our activities that don’t required to be present here, like filling info online. If you can collect a list of patients who want to be contacted, we will definitely include them. I would need name and email. Thanks! [Editor: this will be actioned outside this website]

Q: In respect of (not) falling, we wonder if the following thesis has been investigated: OT patients tend not to fall because they’ve become really good at avoiding falls.  Many of us use avoidance techniques like staying close to walls, navigating from one solid object (table, chair, bench) to another, and simply sitting down on the ground if we’re anticipating a fall.  Perhaps we’re just really good at avoiding falling based on learned behaviour?

A: Perhaps this is the case. And I acknowledged this in the presentation when I stated that we could learn from the OT patients how to teach others not to fall. But we have patients with other conditions, like Parkinson’s, who fall several times a day…Are they just unable or unwilling to learn how to prevent falls? Many unanswered questions. 

Q: It would appear that many OT patients have experienced at least one deeply traumatic event prior, and in many cases a long time prior, to the onset of OT.  Is there any research or evidence to support a connection between OT and some sort of PTSD?

A: This is a great question and yes, we are investigating this. Thanks. 

Q: Is there any research correlating OT with sight difficulties?  Many OT patients reported apparent deterioration in eye sight (especially when taking Fycompa, although there was one case of improved eye sight when on Fycompa).  Is there a related “eye tremor”?  Eye testing is commonly done with the patient seated, has anyone experimented with eye testing while standing (!) for OT patients?

A: WOW. Smart questions. Yes. In 2017 we completed both of these studies, one looking at vision and one looking at eye tremor. Data is in abstract format. No abnormalities found so far, but there is a lot more data that is pending including the optical coherence tomography and the formal eye movement studies that we performed. This needs to be analysed and we will keep the community posted as we continue to publish papers on this and other areas. 

Q: Have any studies been done on steadiness and ambulation for OT patients at night time?  Many reported things are worse “in the dark”.  Or is this just another variation on the “open eyes” vs “closed eyes” balance issue?

A: We are reviewing this very question and we will know more after the data is analyzed. 

Q: Many OT patients reported a difficulty trying to start walking after a period of standing when the tremor is active.  Is this “grounding” or “freezing” a known side-effect of the condition?

A: This is part of the current study and I cannot release the info quite yet, but it is coming.

Q: How common is the co-occurrence of leg pain or lower-back pain?

A: We believe it is not high.