Thursday, May 12, 2016

Lyme Disease Conference Update
May 11, 2016


As posted by Elizabeth May, who brought the Private Members Bill about Lyme Disease (Member of Parliament for Saanich-Gulf Islands, leader of the Green Party).  See blog post about Bill C-442

As many of you know, the Federal Framework on Lyme Disease Conference will take place in Ottawa starting on Sunday, May 15. Patient representatives and stakeholders will be speaking at the public forum Sunday evening. Members of the public can also register to attend the conference, including the public forum, however the speaking slots for the Sunday night are now full.

You can also listen to the conference online if you are unable to attend in person. If you select this option on the registration form, details will be sent to you about conferencing in.The government has now opened up registration so that an unlimited number of people can listen in to the conference online.
The conference agenda has also been posted. You can read it here.

Once again, the details are as follows:
Event: Federal Framework on Lyme Disease Conference
Where: Government Conference Centre, 111 Sussex Drive, Ottawa
When: May 15-17 -- public forum will be held May 15 from 7:00-9:30 PM


For more information about the conference, you can visit canada.ca/lymedisease. To register to participate in the conference and public forum, you can fill out this form and email the completed form to the Conference Secretariat.
If you have any questions about the Lyme Disease Conference, you can also contact the organizers by e-mail.


Wednesday, April 27, 2016

Lyme Conference in May, Ottawa


After many discussions and delays, the conference that is required under federal Bill C-442 will take place May 16th and 17th in Ottawa (a Monday/Tuesday). We would like to have a public forum evening, preferably on Sunday May 15th, but the details will be decided by the planning committee for the conference.  

The conference is open to the public and medical professionals, and will be live-streamed online. More information can be found here

If you wish to attend any sessions in person, you would have to register by completing this form


STREAMING VIDEO


We need more people to register online for the Webinar of the May 15 to 17 conference  EVEN IF YOU DO NOT INTEND TO WATCH PLEASE REGISTER 

The numbers are low so far and we need to show them there is a lot of interest !! 

Have your family and friends register as well !!  Once they have registered they are more likely to watch. 

WHAT IS BILL C-442?

 Bill C-442 is an Act to Create a National Lyme Disease Strategy. 
Read more on this blog post, please. 







Wednesday, April 20, 2016

Long overdue update

Where did the days go? A common lament these days, it would seem. I've been meaning to update - but something always happened to eat the time available.

All in all, good news all around.

THYROID CANCER
Arno had his Radioactive Iodine treatment in December. He was kept completely isolated in a room for two days and the third day his readings showed that his body did a good job and he could come home.

During his checkup in February we were told that the only absorption of the RAI was around the throat area. That means he is cancer-free and that nothing has spread elsewhere in his body. He has to have another scan and checkup in a few weeks.

His meds seem to be balanced enough and he hasn't complained of anything, but we have to keep watching it. Since he has no thyroid, he has to use medication to replace those hormones.

BRAIN TUMOUR




I saw the brain surgeon on April 18, after an MRI on April 9. He is quite happy with the healing. The picture on the right was taken with the cell phone off his screen, so not very clear,

About driving - that has to be seen! Need to make an appointment with the neurologist who saw me in the hospital and he has to complete the forms to apply for reinstatement of the licence. Then the MTO will take up to 30 days to review the file and decide if I'm to be allowed to drive again. On June 14, it will be a year and after that it will be much harder to try and get the licence back.

LYME DISEASE
In February we went to see Dr. McShane again. She concluded that my Lyme, Babesia and Bartonalla are all still active and on the go. But I didn't want to go the antibiotics road again and am using some alternative ideas, with the urging of a specialist, the support of another specialist and the knowledge of my family doctor.

OTHER STUFF
Some fun events have happened in the mean time!

One joyful occasion was to be part of the cast of a Murder Mystery production. The title: Sam's Last Safari. Poor Sam, the winner of a lottery after a spell by a witch doctor, took an entourage back to Africa. His aim was to bring back a pet lion ... but he ended up being eaten by one!

Much hilarity ensued and the cast had a ball.




There were some travels, wine tasting as usual in the Niagara region with a group of good friends, and lots of work being done. 

Alf Clausen
In December, we celebrated the 100th birthday of my good friend Carolyn's father. Same day as Frank Sinatra, nogal! What a party. Family came from near and far, even from overseas, to celebrate the auspicious occasion. Of course there were congratulations from Queen Elizabeth, and various officials, as well as on radio and TV. 

His grandson (40-ish himself) shared a film he made by interviewing granddad. Alf showed his daily exercises, which include weights, cycling while on his back on a yoga mat, and more. He keeps busy by dancing, dining, card and domino games with friends, walking, church, and reading every label of food he eats. What an example he is! 

We also had snow into April - even though our usual snowy month of February had nothing! My poor snowdrops were encased in ice during an ice storm as well. Such brave little blooms! Hopefully, the warmer weather is here to stay now. What would Canadians talk about, if not the weather??


Thank you for reading, whatever your reasons might be.

PRIVATE POST
If you have been given the password, you can access this post. It is not for public consumption, being of a rather sensitive nature. LINK

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