Niagara Falls for Lyme Awareness

May 17, 2013: Niagara Falls going green for Lyme Disease Awareness for the first time ever! Arrangements were made for people to arrive from all over to witness the event. We planned to meet at Table Rock around 8 pm. Some were inside, getting coffee and staying dry.

The tulips were gorgeous and just had to make it into a picture! No, it was not raining, for those who have not yet visited these falls - the spray is carried everywhere so always remember a jacket or something if you don't want to get wet!

Brought a T-shirt for the next day's Brampton Lyme Awareness Day for Jim Wilson, president of the Canadian Lyme Disease Foundation, and pinned it to his back. He let me -- brave man! 

 Nine o' clock and the lights turn green for the first time ever to highlight the Falls.

Green lights on the Falls for Lyme Awareness - what a wonderful sight! Pity it is needed, but so grateful for this vehicle to carry awareness.

Nina brought her beautiful dog -- and used the time to chat to everyone, meet people and to make connections. Her Lyme Disease had kept her housebound for most of the last two years. This disease just takes so much from so many people, even if it is not visible at first glance. 

Green lights on the American Falls against the darkening sky at 9:10 pm. The lights are housed on the left in this picture. 

Posters to tell the story about ticks, Lyme Disease, Canada Health and more. 

Old friends: Janie, Pam and I met more than a decade ago through an online chatroom, watching webcams in South Africa as wildlife went about their days. We have met several times in real life, and they came to show support at Niagara Falls. 

Setting up, trying to get a group shot of the 40+ people who attended the green Niagara Falls. 

Lisa Hilton in the USA captured a screen grab from the webcam over Niagara Falls. While we were there, I sent cell phone pictures to Facebook and people were commenting. Even from South Africa --- Pam was watching at 10 to four in the morning, with her little dog on her lap, in real time as history was made at Niagara Falls. What a wonderful experience to be a part of this event! 

Friends together with Arno behind the camera: Carolyn, Kim, Pam, Janie and Kevin.

Dr. Ernie Murakami poses for a picture with Christene (?), Marie and Debra.  

LymeSavers: Kevin, Cari and Bob

Jim with his T-shirt pinned to his back, and Kim chatting in front of the Falls. 

These are only a few of the pictures taken on Friday, May 17. Some 40 pictures are on an online album HERE if you want to see.

All in all, a magnificent evening! We only got home at midnight and then still had to slice up oranges to prepare for the Brampton Lyme Disease Awareness day the next morning. We only got to bed around 1:30 am and up again at 6:30 am. Busy captioning those pictures to share. It was a great day, glorious sunshine, and with good connections for Lymies, who need the support of the community to life with this disease. 

Watch this space .... 

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

Are you a Lymie?

If you have looked at this blog before, you would know about the excitement regarding the first Lyme Awareness Day in Brampton. The team who helped me make this idea real, is a wonderful group and it was an immense success. We are still on a high! We met many people, and many found support and outreach in the process. Pictures and info on this blog.

In preparation for the event, I've asked the city of Brampton to proclaim May as Lyme Disease awareness month. Upon receiving that proclamation, I did not have a presentation prepared, but offered to answer questions. I'd bullied Kim to go down with me for moral support. You can read the description of that day here on this blog. Proclamation from Brampton City Council

As a result of that day, Councillor John Sanderson asked us to set up a meeting with him, to take our request for more support to the Regional Council. As it turns out, Kim's father knows Councillor Sanderson. The meeting was set for Friday, June 8. The week before, my buddy, birthday partner and longtime friend, Joe Gray, happened to run into the Board chair of our local LHIN (Local Health Integration Network**). As usual, he started talking about the plight of Lymies in Canada and Maria Britto was very interested.  She joined in at our meeting on Friday.

THE REQUEST

We were asked to get together a list of names of Lymies in Ontario - if possible, pictures if they would allow it, otherwise just initials or first names, ages, how long infected and area - or a combination of those to show how many Lymies are in the same boat. That will strengthen our case. We are adamant to keep fighting for the right of Lymies and their caregivers. This is no longer a rare disease and it is only getting worse.

If you are willing to be included in such a list, please let me know as much information as you are willing to share, with or without a picture. I promise not to hang you out to dry! I know some Lymies are not public, for various reasons, and I respect that.  Please contact me at Lymies of Ontario  THANK YOU in advance!

After that  meeting, I met up with Jim Wilson, president of CanLyme, and we had an excellent discussion. We feel that this year things are happening! We talked about the successful Lyme Walk and the same event for next year, as well as compared symptoms and situations of Lymies. I so wish to be able to help more, but realise that the fact that I'm just over 5 ft tall and not very loud spoken, people often ignore me as part of the background. So --- I'll collect the info in the background and strengthen the arms of those who are bigger than I am!

I firmly believe that the path is being paved for us and that it will go forward, from strength to strength!

**If you haven't heard about LHIN before, here is a short summary: "LHINs are an important part of the evolution of health care in Ontario, moving from a collection of services that were often uncoordinated to a true health care system." Website

My name is Marlene and I'm a Lymie, infected in Ontario in 2007, had a positive Canadian Lyme test in 2010. Now going to the USA for treatment.