|Joe and I in 2011|
Delegation went very well. It was started by referring to the ticks Wendy collected in her garden in Kingston --- proof they are here! One of the references made, was about Health Canada's latest newsletter as published on their site. Basically it said that the tests "have some limitations" and doctors should be encouraged to use them as support for a clinical diagnosis. Referred to a presentation at the Toronto and Region Conservation Authority this September. The TRCA is the largest landowner in the Toronto region, and will start information on Lyme disease and ticks to their employees and visitor information systems. That's a great start, but we also need to get information to children, since they are at the highest risk. We need to get to schools, Scouts and Guides. I used a quote from Janet Sperling, one of the authors of a newly printed paper in the Open Neurology Journal, that "if we can put people back to work (even part time) it's better for everyone. People with Lyme want to be working and it's a reasonable thing if we can first treat the Lyme!"
After the presentation, there were several questions - good ones! - with great suggestions. There was a connection to get something presented to the FCM (Federation of Canadian Municipalities) and AMO (Association of Municipalities Ontario). On November 7 we should hear if we are invited to the ROMA conference in February.
Some links referred to or pieces of documents used:
- Health Canada's newsletter extract posted on LDAO's website; link on the Home and Archived Articles page.
- The abstract from the Embers report, and specifically the blog post by Lorraine Johnson
- The freshly published paper, Evolving Perspectives on Lyme Borreliosis in Canada
- Toronto and Region Conservation Authority (TRCA) website
- My own story included just as background (Sept 2012, p 42-43)
WHY I TALK TO GROUPS
When I was asked the first time to talk to a group (Probus) I was very nervous and not at all feeling like the right person for the job! I've never been a public speaker; much better to support those who do the speaking! But they were gracious and supportive. By now it has become something I'm passionate about, feeling that if only one person hears the message at every talk, gets information and can protect or help a child or loved one, it was worth it. Today, it happened almost immediately.
The Council meetings are on a local TV channel in real time, but there are no nerve wracking TV cameras to be seen. I was aware of the fact, but didn't really think about that during the delegation. However, barely an hour after the presentation, as Joe and I finished debriefing over a cup of Timmies, an email came in. Pina wrote:
"I caught the later part of your deputation at the Regional Council meeting this morning. I have been feeling unwell for the last 2yrs and have been desperately trying to figure out, what I now call 'the mystery disease'. Last year I googled my symptoms and lyme disease caught my attention. I proceeded to research the disease and discovered that the testing available in Canada is limited and not accurate. I emailed the Region as well as other Canadian health services and received no help. In a desperate feat I asked my family DR to test me for lyme, knowing that the test was a waste of time. Test came back negative, of course.
I guess what I am asking is, where can I get properly testing and what avenues are available to me. Any help would be greatly and desperately appreciated."
We swapped emails and then I sent her my phone number. We spent quite a while talking. She was home with the flu today and was just channel hopping when she caught the Council meeting and mention of Lyme Disease. I dropped everything to take a test kit to her sister, and to share some information.
THAT is what makes it all worth while. That people who are sick, desperate, maybe even without hope and, like most of us finally diagnosed Lymies, thinking they're losing their minds, can find some information, someone to talk to, and support from someone who can say, "Yes, I understand - me too!"
VIDEO LINK ~~The video of today's council meeting is online, on THIS LINK - from about 32:45 minutes in if you move the starting point forward. We were second on the agenda if anyone wants to try and see a bit.
|To see video of the delegation, click the link above the picture|