Green lights for Lyme on CN Tower

Finally the day arrived: May 11 - the day when Toronto's famous landmark, the CN Tower, would go green for Lyme Disease Awareness!

It was cold and breezy and with lots of construction around the tower, it was an adventure to get ourselves down to the assigned spot. But Lymies are nothing if not determined. About 30 of us walked, drove, shuttled and subwayed ourselves to the foot of the tower.

We were disappointed, though, when the green wasn't solid as promised, but mixed with blue. It was very hard to take proper pictures, showing green from bottom to top! We figured the blue was mixed in for the Maple Leafs or Blue Jays (sports teams, for those who, like me, don't really know sports).

But that didn't put a damper on us. We laughed, made fun, hugged, swung glow sticks, bopped each other with blow-up flags, bounced and jumped to stay warm and generally had fun!

Pictures are uploaded to an online album but will be shared here too. Oh and I just had an email that another Canadian icon will go green on Saturday ... more info to follow as soon as it is confirmed! It is in another province, and we hope pictures will follow!

So -- a group of us arrived at the CN Tower before sundown, which was after 8 pm. We had to traipse and walk and encounter detours, climb over construction, watch out for walls and generally walk way more than we bargained for! But we met under the Canadian flag as planned, thanks to Mary who scouted out the place before the time.

As darkness approached, we could see the colour starting to show on the tower.

But it kept getting blue in there as well, which made it very difficult to get pictures!

Nice one with green at top and bottom, and just a little blue in the middle, as the lights were changing.

Arno behind the camera, trying to capture some pictures while the tower was green.

Canadian flag waving in the corner.

The group gathering at the tower, wrapped and layered against the cold!

Kevin and I -- moving as Arno tried to get a shot. I think it is kind of cool, though, with the tower green and the moving heads in front!

Cari and Kevin in front of the tower.

Cold people chatting. Yes, it is Canada, but this was the middle of May and we didn't expect temps that low! In fact, the next day there was snow in the air.

Mary, Debra and I in front of the green tower.

Grandma and grandkids in front of the green tower, holding signs that said .....

... I was only 5 years old when my Nannie got sick; and I have never seen my Nannie well, but I would really like to!

Bob seems to be a little chilly .... he wasn't wearing enough layers!

Our photographer for the group shot, Arno, on his back on the ground, taking the picture upside-down! Some kind soul thought to keep him warm with a green blankie .....

Now we are getting ready for the green lights on Niagara Falls on Friday, May 17! People are driving over from the USA, driving down from all over Ontario, and flying out from BC and Nova Scotia. 

Remember to those who are driving to Niagara Falls, there is paid parking all over the place and you can buy a pass for the WeGo buses (formerly Peoplemovers). Parking is usually free by the Floral Clock and the buses should pick up there too. LINK: WeGo

Meeting place for the green lights on the Falls: Table Rock at the Horseshoe Falls. First block of green lights is at 9:00 pm for 15 minutes.  See you there!

Original post on this blog about the green CN Tower: Tower will go green!

Free Lyme info sessions in September!

Really exiting news is that the LDAO, the Lyme Disease Association of Ontario, arranged for information sessions so that people could ask questions, meet others and get support when they or their loved ones are dealing with Lyme Disease. We hope that health care workers, pharmacists and physicians will also attend some of the sessions if they can.

Dr. Ernie Murakami is a man I've met personally and you can read more about those meetings by searching his name in this blog. I have immense respect for him and his knowledge about the disease, his tireless education and the time he spends to help others. If you can attend any of the sessions, please do. You won't be sorry!

Don't click on the thumbnail to download; find the link at the end of this paragraph. It will be in mid-September, on the 14th in Fort Erie, the 15th in Burlington, the 17th in London and the 18th in Brampton.
Download information sheet from HERE, or go to the LDAO website to download from there. 


Book online for Brampton
I'm especially involved in the Brampton event and have created an online invitation for people to "book a seat" so to speak. There are no assigned seats; it will be first come, first served, but the venue has excellent acoustics. It is free to attend any of the sessions, but we hope to receive some donations either online or at the door to help offset travel costs. You can refer family or friends to the online invitation as well. When registering, the seat count will adjust and you can also invite others from there. Whatever is easy for you! Online registration for Brampton only HERE. 

Brampton Flyer

Don't click on the graphic to download, it just shows what the flyer looks like.
The green thumbnail graphic shows a flyer created to help promote the Brampton event, if you wish to invite friends or contacts or put up posters at your doctor's office, health care workers, clinic or pharmacy. Remember to ask permission first!

The flyer is in PDF format and should open on most computers, as well as print on most printers.
DOWNLOAD 

Please share this information or blog post with others, on Facebook, Twitter or wherever you might have connections who might be interested. Even if you can't attend, perhaps you want to donate a few dollars, wherever you are. The money will all be paid over to dr. Murakami's foundation, to be used for education about Lyme Disease.

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

Lyme Mobile brings something wonderful

This is meant to be, Kim and I are sure of it! This Lyme Mobile has already saved lives. Happened again this morning. But first to tell about last night!

We took the Lyme Mobile over to Vaughan for the Magnotta Underground Cellar event, to benefit CanLyme and awareness of Lyme Disease. Neither of us met Rosanna Magnotta before, although of course we know of her, and their winery is one of our (family) favourite spots in the Niagara Region.

Trying to change lanes to get to the winery last night was interesting! People kept reading the messages and signs on the car instead of letting us in! But we made it and Rosanna was waiting for us. The Lyme Mobile was parked so that arriving guests would see it and know they were at the right place.

Rosanna Magnotta, Kim and Marlene with the Lyme Mobile

(bigger picture)

Inside, we met with several interesting and interested people, struck up conversations, enjoyed the delicious snacks and of course Kim shopped a little! We were surrounded by barrels of aging wine, and people who actually asked the right questions about Lyme instead of looking surprised. Sharing stories, some of them horror tales of sadness and lives forever changed. There has to be accountability; this can not continue.

 

Picture above is a combination of one of the pretty decorated tables scattered around, and a view from a corner of the cellar where the function was held. (bigger picture)

A meeting meant to be

This morning, I took the Lyme Mobile to work since it has to be at the Brampton Community Expo tomorrow, with flyers, CanLyme brochures, and Pam and I in attendance to promote the Lyme Awareness walk on May 19. I took a different route than usual, stopped at several places where I don't usually go in the morning, and then decided to visit a business supporting our Lyme Walk. I didn't know where they were, so pulled into an office building's driveway to make a phone call. 

I wasn't there 10 seconds when a man came out of the building. He did a double take when he saw the Lyme Mobile, walked to the side and asked me to roll down the window. He said, "This is the Lyme Disease I know about, right? From a tick?" I said yes and he said, "I have a friend in the hospital in Downtown Toronto. She is dying from Lyme Disease. The doctors don't know what to do. I don't know what to do."

I grabbed flyers about the Brampton Walk and brochure of CanLyme, told him I have Lyme Disease myself and was dropped from treatment in Ontario. He got very upset, saying what are people supposed to do? I said that is exactly why we are driving the Lyme Mobile, arranging events like the Lyme Walk, handing out information and trying to bring awareness. Wrote down some info, told him to try and call my doctor, give my name and see if he can get help for his friend. He was so grateful, I was in chills and almost in tears .... 

The kind, kind man shook my hand, and said, "What are the chances of me meeting you here now, today, in this moment?"

This is planned, this is meant to be, we are being directed into a place and being exactly where we are to be. No other answer. For me, I believe that God is directing this. Other people can believe in another power. But this is not from one person or even a group of people.  There is a force at work, and this year will bring great things and great changes.

The Lyme Mobile and the Hydro worker

On Monday, when Kim had the Lyme Mobile, she stopped at a Tim Hortons. There was a group of Hydro workers and they asked about the disease. She started talking, one guy pulled up his shirt --- and he had a bull's eye rash. Kim immediately handed him brochures and told him to get himself to a doctor as soon as possible, to insist on at least 2 weeks of antibiotics and to find another doctor if that one wouldn't give it to him. Unfortunately only a very small percentage of infected people show a rash like that, but the specific rash is complete proof of Lyme Disease. Immediate treatment is needed. DO NOT wait for symptoms. 

That is what we're trying to accomplish: Information, education, knowledge, patients to be on the lookout without being paranoid, and doctors to treat immediately.