Is it my eyes, my anxiety or fear, or PD that is causing many of these symptoms?
Walking Through Honey Diaries:
March 2012
I have taken six different antidepressant pills over five years to no positive avail except, probably, a reduction of anxiety. Have had some bad side-effects.
Is it my eyes, my anxiety or fear, or PD that is causing many of these symptoms? Weak legs, dizziness, nausea, lack of usual enthusiasm...
Am I suffering from sadness, depression and anxiety due to the genetic condition of Dov and Lev and my obsession with finding
a cure? I self-diagnose Parkinson’s disease via Google and, again, become completely preoccupied. Am I suffering from Obsessive Compulsive Disorder?
I become confused as to emotional and physical issues.
I consult with a number of therapists and psychiatrists over a nine or ten-year period.
Eventually, I’m not able to discern what is causing this giddiness, this nausea.
I think I can rule out depression. I don’t seem to have the normal symptoms of depression...What is it then?
As 2012 continues, my symptoms are unabated; in fact, they continue to mount. I am generally slow in my movements – the medical term is bradykinesia. My voice has dropped in volume, sometimes almost to a whisper, and I have difficulty modulating it – this is known as hypophonia. I am less expressive facially, which my family has noticed. My right leg continues to feel rubbery, as if it could give way at any time. I am constantly fatigued. Dizziness continues to plague me, including a sensation like rocking on a boat, and a lag in vision. In terms of triggers, head movement, bright lights and stress set me off. Emotionally I am on a short fuse, with my tendency to sob still in full force. I feel spaced out, not altogether in touch with what is going on around me.
Professionally and socially, I start to struggle a little. Meetings, speeches and surmounting reams of paperwork become difficult. In social situations I am easily tired out. Standing for long periods and engaging in animated conversation test my limits.
I have a strange encounter with a psychologist who specialises in Cognitive behavioral therapy. I explain to him the continuous vortex of dizziness I find myself in, accompanied by the feeling I am about to faint and fall. His response is novel. He tells me I should just allow myself to faint and fall. He has me sit in a rotating office chair and swings me around and around. The idea, I suppose, is for me to confront my fears, and through exposure, to become desensitised to what I am afraid of – hitting the ground in a dizzy spell. He suggests I sit in a small, heated room to get over my sense of things closing in on me – precisely by creating a situation in which things are closing in on me. Our therapeutic relationship does not last long.
Ondine and Dror suggest that I speak with a young neurologist friend of theirs. He has offices close by, and Ondine accompanies me.
In retrospect, it is a diagnostic turning point. May 2012 is the first time a neurologist will put a diagnostic label to my condition, albeit with what at first seems like some equivocation. After thorough exam- ination and history taking, the neurologist’s opinion is that I have ‘an element’ of PD. I am not clear on what exactly this means. I write to him to seek enlightenment:
Brian: Your report says I have an ‘element’ of PD. Can I have the symptoms I have but not have PD? I.e., can one be a little bit pregnant. I.e., have a little PD?
Doctor: I suspect this is early PD, but you do have slowness of movement, that makes you pregnant (not a little bit pregnant). There are other conditions that can mimic this, but I feel your clinical picture is consistent with early PD.
Brian: And finally, is it possible that I am mimicking PD symptoms given the severe traumatic emotional state I have been in and closeness to my father-in- law who had PD?
Doctor: I have seen this but very rarely. It is very hard to do (subconsciously of course) but the cogwheeling I feel is a little too hard to mimic, even subconsciously. So no, I don’t think so.
It is all exceptionally confusing. His senior neurological colleague – the very first specialist I had seen, in 2011 – continues to categorically exclude Parkinson’s. It’s a split decision between the experts, with no resolution in sight.
What am I to make of this? I am in a kind of limbo, suspended between the differing convictions of the specialists. The older doctor’s adamant stand against diagnosis is a beacon of hope, which, of course, springs eternal. Yet my concerns remain, and there is one clear benefit of a definitive diagnosis: treatment can begin. I worry that indecision will delay action on therapy that could reduce the symptoms and, I hope, manage the progression of the disease, if it is indeed PD. On the other hand, I worry – even more so – that if it is PD, the walls are really closing in. I have visions of Eric, incapacitated, straining to walk, and trapped in the jar of honey.
––Brian Sherman AM