The Fear of being Frozen
I don’t get to spend as much time as I’d like with my dad because of the distance between us - he lives in the San Francisco Bay Area and I’m here in Las Vegas. He and my mom recently flew down to see my daughter’s First Communion. We had a great weekend - but there was one big shift in his PD that caught my attention. He was experiencing freeze ups.
I’d seen this in him about 12 years prior - and it terrified me then because he was still early onset. I wondered at the time if he wouldn’t be around much longer. Not long after he adjusted his medication and suddenly became relatively functional again - driving and playing golf, at minimum, the two markers we always set as a baseline for him.
But during this visit, the problem really became noticeable when we went out to eat. As we were entering the restaurant, my dad experienced a freeze up right in the doorway. He’s already sensitive to people looking at him - he wants to be treated “normally” more than anything. The semi recent acceptance of the use of his walker has helped this. But even with a walker, a freeze up is still just that. I felt terrible for him as there’s really nothing anyone can do for him. With people waiting to come in or go out of the restaurant, I can only imagine the anguish and embarrassment my dad was feeling.
We talked about it later and dad agreed it was time to get back to his neurologist and movement specialist right away. Fortunately for me, I had a trip scheduled for the Bay Area just a few days later. I was hopeful that seeing him at home, where he’s more comfortable and has the familiar trappings around him, would lead to less freeze ups. In total, that may have been the case. But I’d be lying if I said there weren’t any.
While the social embarrassment of freeze ups is, no doubt, a bad thing, the larger concern Is that the freeze up leads to a fall - where a bad thing goes to a potentially life-changing thing. Dr. Howard Weiss wrote a great article a few years ago about freezing of gait. I wish it wasn’t so spot on.
As he says, there’s no absolute or correct way to deal with these episodes. Everyone’s PD and freezes will be different. There are adaptive techniques some use to get through these moments (counting, auditory or visual cues - all of which can “jump start” the brain to free the affected person up again.
Why do freeze ups happen? Like many things in Parkinson’s, there are many possible reasons and, it seems, often a litany of them that add up. A lapse in medication can trigger the problem. Environmental conditions like a narrow doorway or challenging terrain can do it, too. And, as seems to be increasingly on everyone’s list, emotional triggers like stress are always a threat.
Dad did get an adjustment in his medication and says he feels better today. We have a trip scheduled for next week for Seattle, where we’ll be working on our latest PD workshop. I know how much my dad would like to be there. We’re currently measuring whether or not it makes sense - or is even safe - for him to be there due to the travel and all the potential triggers. So it goes with PD. I’m so proud of my dad for how hard he tries. I’m also very aware of when trying isn’t enough and there’s just a stupid disease pulling the strings that will not be denied. So we do our best each day. I’ll write back soon about our adventure and workshop in Seattle.
written by Robert Cochrane