Wednesday, November 11, 2020

Nicola Day

 Tuesday morning, I wrote my carefully crafted letter to Dr. Tendera at Toronto’s Holland Bloor Hospital. She’s the post-doctoral researcher in speech/language pathology that I “met” (online) at the conference; I wrote to ask her about my ‘seizures.’

It would thrill me if she were to consider them to be a symptom of stuttering. The general anxiety, social anxiety, motor control and breathing issues are all aspects of stuttering I share with other stutterers, but no one mentioned ‘seizures’ and I’d love to better understand their cause.

Were she to associate them with stuttering, it would end the last existing medical mystery of my life. I always named them—seizures, faux seizures, meltdowns, episodes— Dr. Shoja never named them. To her, they were just part of my collection of physical symptoms—eye movements, breathing, jerking, etc., and part of my psychological compromise.

If they are part of stuttering, all my symptoms will be due to my being a late onset stutterer—and that’s all—and not someone with psychological problems.

If she has never heard of stutterers who seize, I know that she will consult with her colleague, Dr. Beal, who is her supervisor, so my question will be considered by Canada’s foremost clinicians in stuttering. 

Plan B is to ask the same question to Dr. Maguire. I don’t have his contact information, so yesterday morning I also wrote to the CSA, sponsors of the conference, to ask if they’d assist me in putting my question to him should Dr. Tendera be unable to answer it.

I am so close to solving my mystery. I may soon have a much more satisfactory explanation for the sizures than is C-PTSD five decades after the events and a lifetime of contentment. I like being a psychologically “normal” person who stutters, very, very much!

There is something valuable in my conference experience for everyone if you consider what’s happened this way: A person with a medical conundrum, goes to a conference where medical experts in the field of his affliction make themselves available at no cost and even across borders for a certain level of consultation.

Truly dedicated medical clinicians/researchers want to spread word of their advances to peers and patients. By going to conferences, “unsatisfied” and inquisitive patients are rewarded for their curiosity and perseverance with access to life-changing data and the personnel associated with it. It’s remarkable!

From the conference transcript: 

“Dr. De Nill and Dr. Beal have found actual neurophysiological differences between PWS and people who don’t stutter … destigmatizing stuttering from a psychological disorder to a neurological difference. All to often, we hear PWSs and their families theorize that childhood traumas or poor parenting caused the stuttering. That is not true at all.”

With my letters written and sent, I lit the fire in the studio and then went for a damp walk with Her Highness. It wasn’t raining but everything was super saturated. Then we went into the village for the new glue I wanted for the curtains, and when we returned home, the studio was toasty warm. I got right to work and finished the first half of the curtain.

Today, of course, is nasty wet. I’ll be head-to-toe in rain gear for the dog walk. It’s a rain pants day and for the foreseeable future. Pooey.

But Nicola arrives just before one pm, to stay until Friday. It’s going to be fun to have someone to talk with around for a while. She’ll spend the afternoon with Patsy but tonight we’ll go to The Surf together for dinner.

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