Monday, October 17, 2022

STAMMA Opportunity

It was only 9° when I headed out to join my friends for the large dog walk, but it was lovely and bright. The sunshine was beautifully warm on my back as we walked. I focus on enjoying every minute of this endless Summer that we have left. It will end on Friday, and the long days of dark and wet will begin. Oh, what a lovely Summer we’ve had. We walked for almost an hour and a half. Everyone wants to make the most of these glorious days. 

I got an email from STAMMA asking me to Zoom with a gathering of U.K. medical professionals who want to educate themselves about FND. I’m very excited about this opportunity, but it may involve getting up very early to participate.

When I was having several seizures every day when FND first came on, people would call 911 and my condition and the testimony of the person who called made the paramedics insistent that I allow them to take me to the hospital. But when tests and my testimony were accepted, they gave me attitude for wasting their time. When I had a heart attack and had a seizure in my room, the doctor asked me to do have another. I said no. He asked me: How do you do that?

I googled FND when I was diagnosed, and I kept reading and watching videos on YouTube. One thing they all have in common is a sentence like this: “FND is real.” I asked myself why. Who are the people for whom it is unreal? For me, the answer is, the medical system.

That’s why I’m keen to do the Zoom. My experience was due to their lack of knowledge and understanding of neurological disorder. I’m not angry about those events. Instead, I am increasingly an advocate for FND education. I understand that FND is the second most common diagnosis of UK neurologists.

Last night I watched Accepted on the PBS series Point of View. It was an emotional roller-coaster ride, perfectly directed. I was gutted at its end. It’s a powerful documentary about a school that made miracles until …. I can’t remember the last time I was so moved by a movie.

I have a meeting this morning with Nancy about clinic business. We’re making progress. We’re starting to execute our Plan B for recruiting doctors. We’re placing the ads I designed, and we’re very close to making changes to our website. I’m feeling very comfortable in my role with the clinic now. Nancy and I are doing work that saves the Foundation big money. I am very, very glad I responded to the Foundation’s ad for volunteers in the paper.

Soon, we’ll start working on the newsletter. This is going to be an interesting experience. I believe our accountant Harvey may be creating it and sending it out via a newsletter website—Mailchimp. It’s a program I understand. I want to do the newsletter, but I have no expectations. I’ll certainly be a voice in the process of creating the content.

I have ideas for things for us to do in December, I hope to propose soon. But Dyan is about to be president, I’m thinkin’ of a party to inaugurate her administration that also functions as a Christmas party for board members, and to which we invite key people from the community where we make a presentation on how they can help us, in non-monitory ways, to secure physicians.

It's going to be shocking when the rains come and life is spent indoors. And it’s going to be rather dreadful when Daylight Savings Time ends on November 6. I’ll start waiting for Spring again as it gets darker and darker. I love being outdoors. I see Merrill, Leo, Issa, Dave, and Ursula, all the time in Summer. I’ll miss that. I’m glad for the clinic meetings. They give me social contact and get me out. 

Pink Pearl Apples

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