Breaking News

News for the Brampton Lyme Disease Awareness Day just keeps getting better!

First Dr. Ernie Murakami let us know that he will be on the bus to Niagara Falls on May 17 and attend the Awareness day on May 18. He is flying in from Nova Scotia for the event.

Jim Wilson in Toronto, 2011  

Last night Jim Wilson, president of the Canadian Lyme Disease Foundation, sent email to say that he will join us on the bus to Niagara Falls as well as at the Awareness Day on May 18! He is flying in from BC.

Dr. Ernie and I, Toronto, 2011  

This is exciting news for Lymies who are planning to attend the awareness events in Brampton or Niagara Falls. Both these men have given so much of their time, their expertise and themselves to help others along the way. It would be an honour to have them here and I hope they remember to pack their smiles!

Items have started arriving from my friends far and wide across the world to be used for Silent Auction items or for prizes. One beautiful item from England is a handmade glass pendant, using rainbow fused glass and with elephants etched inside. Another is a lovely watercolour painting, sent from South Africa. Someone else donated a gift certificate for craft items, especially quilling to be ordered online. There are T-shirts and more being promised and ideas being discussed about what to send. I'm so grateful to everyone, in every way, helping to make this day a success.

The LymeWalk website has been updated and the REGISTRATION FORMS are ready for those who want to download. As soon as you are registered, by completing the forms and sending them back, we can send the fundraising package which includes everything needed to talk to your contacts.

• On April 18 a Lyme Disease support group will meet in Nobleton, Ontario, from 7 to 9 pm. The meeting will be in the library at 8 Sheardown Drive. A flyer is on Kijiji.ca if you want to download, advertise or share.  
• On April 19 to 21 there will be a Lyme Disease Awareness table at the Caledon Home show in Bolton, Ontario. If you are in the area, please come in and say hello! 

Below is an information sheet about the Lyme Awareness day in Brampton, May 18. The top part is the info about the Walk, including the address. The bottom part is busy, but gives the "breaking news" for everyone to be aware. Click to see a bigger view. Please share! 

Pushing for more awareness

This post will be about several different items, since a lot happened during the last few days, regarding the Lyme Front!

1. Today a group of us will delegate to the Town of Caledon Council meeting, to ask for support and help in moving forward for Canadians with Lyme disease to get the health care they need. This is the request I've sent through to present: "Lyme Disease patients are being denied access to health care in Canada. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease. The public and the medical community need to be educated as to the increasing incidence and range of this disease. Lyme Disease is currently spreading faster than AIDS, West Nile and Avian Flu combined. Lyme Disease can be devastating and affects every organ and part of the body, including the brain, if not treated in a timely manner. The cost to health care and welfare as well as social and economic structures could be astronomical. We need development of a national strategy to address the challenges of timely recognition, diagnosis and treatment of Lyme Disease." Supporting documents are my own letters and story, Jim Wilson's article in the Health Magazine and the Press Release regarding the Government Report about Lyme Disease in BC which was published last March (links below)
2. Some of the statement above was taken from the website of Elizabeth May, Member of Parliament, who will introduce a Private Member's bill on June 20. This will be a "National Lyme Strategy Bill" and is not linked to any one party. This bill is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the blocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care.
3. Tomorrow we'll find out if we can have a Lyme Booth to hand out flyers at the Caledon Day being planned for June 16. It is free!
4. This weekend is also the Markham Music festival. The Lyme Mobile will be there, and so will a booth with flyers and information. If you have a love for music, if you have a dog, if you want to get out and enjoy some fun, join in and come say hi, please!
5. Since starting to collect a list of Lymies in Ontario on Friday, after a successful meeting with a City Councillor and LHIN Board chair, there are more than 2 dozen people who emailed their names or initials to be added. Heartbreaking stories emerge. Tales of neglect by the medical profession, stress and concern about children and parents, loss of jobs, activities, mental capacities, family budgets and more. THIS HAS TO STOP! Under the Declaration of Human Rights we have "- rights to health care and to the benefits of scientific progress".
6. The prediction is that by 2020, some 80% of Ontarians will live in a Lyme endemic area. We all need to know how to do tick checks and early symptom control.  Dr. Ernie Murakami, who was forced out of his practice in BC where he was successfully treating Lyme Disease patients, is very active in helping, supporting and sharing his knowledge. More than a decade ago, he developed a simple, fail-proof method to remove an embedded tick without leaving any mouthpiece or part of the tick behind, and without injecting the stomach contents into the host where it might be attached. The video link is on YouTube, as given below. Please educate yourself, and maybe put the video clip on a CD to take to your doctor and health care workers.

 Links mentioned above: 

• Lyme Disease in Canada: A Tragedy Unfolding? by Jim Wilson in HealthyLiving 
• Press Release in PDF format on 4Shared or directly from this blog
• Elizabeth May, MP, about Lyme Disease
• Do you live in Ontario with Lyme disease? Join the list
• Dr. Murakami's "blister method", using adrenalin to make an attached tick back out YouTube
• Caledon Day, June 16, from 2:00 to 10:00 pm Website and map
• Markham Music Festival, June 15 and 16: Website, pictures, schedule and video clips

Meeting the Lyme warriors in Toronto

What a rush this weekend was! Being able to see, hear, meet, talk to and just observe so many people who have become familiar to me through research about this disease we are fighting, either as patients or as health care givers or family members, gave me energy to fly! Of course, as always, then the crash happens and I woke up this morning with infection in both eyes. And fatigue dragging my feet. But it was so worth it! I'm busy uploading some of the pictures taken this weekend. Below is a collage of some of the pictures that meant so much. I can't pick one that meant more than another, but as a Lymie who have seen the suffering of Mandy Hughes on the film, "Under our Skin", it was particularly uplifting to see her at the conference, and to talk briefly with her and with her mother.

 MORE PICTURES
Too many to name, but the pictures are being uploaded and captioned to Picasaweb. You can see them either from HERE  .... OR if you have a Gmail account and wish to comment on some of the pictures, please go directly to the ALBUM. Hopefully the rest of the pictures will be uploaded today, October 31.

Thank you, to everyone who came and who give us, the patients, so much support, in many different ways!

A very special thanks to my friend Anne, who dragged me along to the conference. Part of the Lyme Brain is that I find it hard to make decisions or to plan ahead. Anne would have none of that. Thank you!!