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

Register: Complete this form and email it to LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

Agenda: PDF available here

Website: canada.ca/lymedisease

Contact: LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

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.

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. 

http://tinyurl.com/zsufq62 

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. 

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

Good news stories

It worked!

Friends, family, acquaintances and strangers - thank you for every letter or email written after the request in the previous blog post, titled "Let's Write!" I'm way behind with updating this blog and have been sitting on the update for several days. My apologies. Again.

In short, we needed to ask the powers that be for an extension of the date set for a conference about Bill C-442*.

Jim Wilson, president of CanLyme, wrote:

Our letter writing action worked.  PHAC has agreed with us to send a letter to the new Minister of Health to extend the date of the conference to at least May of 2016.  They called me Friday indicating they had been hearing of many letters suggesting an extension of time and that they will support it.
It should now be a simple rubber stamp of approval for the new Minister of Health (or existing one depending upon the outcome of the election) to extend the date.
Thank you everyone for taking the time to write... we can be a powerful group when needed.

[ * Bill C-442 is the Federal Framework on Lyme Disease Act, which was posted in December 2014. See post ]

 WHAT A PARTY!

Have you ever felt truly humbled and overwhelmed by the goodness and goodwill of people? I'm not talking about bringing a pot of soup when someone is sick, or flowers when there has been a death in the family. I'm talking about people going out of their way to organize and arrange an outpouring of love, a support that transcends towns and counties, spending their time, energy and money to create a festival of fun for people to get together, to show support as we go through a difficult time.

Bonnie is a force of nature with a heart of gold. I think she might be able to arrange for snowmen to dance if she wills it hard enough. When she heard of Arno and I both going through surgeries at the same time (me: brain tumour; him: thyroid cancer) as posted on this blog before, she swung into action. And swept many other friends along with her.

I knew something was being planned and arranged for the end of September, but requested it being low-key, like a potluck with some games and fun somewhere in the open, just outside the city. As the days before and shortly after our respective surgeries went on, I became aware of some whispers and giggles as friends made plans behind my back. I was not about to spoil their fun - they were planning a surprise and why mess it up? I don't even know how many people have been involved with planning and arranging and don't want to offend anyone!

But never in my wildest dreams could I imagine what was being created. When we arrived around 2 pm on that Sunday afternoon, there were tents and tables, chairs and a jumping castle, people milling about playing various games or browsing the used books, someone behind a BBQ to provide food, bowls of chips and snack food, and even a magician. Friends from near and far came over to smile and hug and enjoy our shocked faces. Those who couldn't attend, sent cards and gifts and good wishes.


There was a corn roast with corn and kettle to cook them in, donated by Gord. When I thanked him for it, he simply said, "You are my friend. I do things for my friends." And that was that.


Various groups of friends from different walks of life could meet and mingle and in some cases even say, "Hey! I know you from such-and-such, how do you know them then?"

I tried to take pictures and talk to everyone, but think I wandered around in shock for most of the day.
Below is a collage of only some of the pictures and people. (Click to view bigger)

Oh but wait, there is another good news story! It could have been a tragedy, but it turned out to be an amazing tale to tell - and added to my belief that there is no such thing as coincidence.

Friend Anne B and her husband Trev are long-time friends. We even shared a hotel room together way back in 2000, in San Diego. The three of us. But that's another story.

Trev and Anne were some of the first arrivals at the Fun Fest. She made sure to wear a bright green top in support of Lyme disease. When I looked around for her after I gathered about some of my wits, she was nowhere to be found. And then the story came out.

Trev was chatting with Ralph. Suddenly, one of the annoying yellow bees (wasps / yellow jackets) stung him on his hand. Within minutes, he started swelling. And we were at least twenty minutes from any of the four nearest hospitals. Ralph called for his wife, Anne K, to bring her EpiPen®. It was administered and Anne B took off to a hospital with Trev.

By the time I heard of the story, since friends were hiding it not to spoil our fun, they were at the hospital and Trev was getting treatment. He was put on IV and given another shot. The doctor said it was "a very close call". The EpiPen® gave him time to get to the hospital and for more treatment.

Here comes the amazing part. Anne K usually only takes one of her two EpiPens. Trev had never needed one before. That morning, when Anne K was switching purses, she looked at the EpiPens, noticing that one would expire in Nov. 2015 and has never been used. She decided on a whim to take both along that day. Coincidence? No such thing!

The day ended with a rousing game of horse racing --- involving plastic horses, numbered squares, dice, lots of yelling and much laughter,

It was a day of great fun.
It was humbling.
It was amazing,
It was healing.

If I haven't yet thanked you in person, sent an email or made a phone call or sent a card to thank everyone for what they had done to make this an unforgettable day, please forgive me. Know that we are overcome with your kindness and generosity. We can only try to pay it forward.

Thank you.

Dear Life,
Today I'm thankful for friends,
for EpiPens,
for folding chairs and laughter,
for people who are willing to care,
and for the joy of telling stories.
Marlene

Let's write!

I'm several blog posts behind --- time seems to be hopping out of my hands! My apologies. I'll get to post the story about an amazing party held for us on September 26 (post added), about a visit to a quaint town in upstate New York and about dipping a toe (literally!) into the waters at the very southern tip of Canada. But first --- an important post and request for help if Canada is to set up a federal framework to deal with Lyme Disease. 

As per Bill C-442 *, the Lyme Disease Conference is required to be held by December 16, 2015 - but Health Canada hasn't planned for the event. There is no venue, no agenda, no date confirmed, no budget and no invitations to attendees.
Time has run out to stage a professional conference.

[ * Bill C-442 is the Federal Framework on Lyme Disease Act, which was posted in December 2014. See post ]

Jim Wilson has sent the following information and background:

The bureaucrats responsible for organizing the conference delayed appointing the chairpersons to organize the conference until late July 2015, despite many requests to get things going. Three chairpersons were finally appointed:

• Jim Wilson, president and founder of CanLyme (link) 
• Dan Gregson, President of the Association of Medical Microbiology and Infectious Disease of Canada (AMMI) (article plus picture) 
• Dr. Greg Taylor, Chief Public Health Officer for the Public Health Agency of Canada (link with picture) 

The first meaningful meeting was set in August - but then the election was called for October 19.

Once the election was called, the Public Health Agency of Canada claimed that they could no longer talk to the chairpersons until after the election because election rules of Caretaker Convention applied which stipulates that only routine government businesses can be undertaken.

As a result the chairpersons have not been able to plan for the conference as required under Bill C-442 and in no way can they effectively execute a professional medical conference in the 7-8 weeks between October 19 and December 16, 2015. Medical conferences typically require many months of planning.

Currently there is no budget for this conference, no venue, no date, and no attendees.

They have sought advice from insiders and found that we can ask for an extension to the requirement that the conference be held by Dec. 16th this year - if major stakeholders agree. We want that date extended by at least six months, preferably into May 2016. 


Each Lyme patient is an important stakeholder.

Please use your own words to get the following message through:

"Bill C-442 requires that a medical conference be held by December 16, 2015.

Due to bureaucratic delays in not appointing chairpersons to organize the conference until the election was called, no discussions have been allowed and will not be allowed until after the election due to Caretaker Convention rules. There is no budget, no venue, no date, and no selection of presenters or attendees. In no way can a professional medical conference be structured with stakeholders in the few weeks following the election until Dec 16, 2015.

I am asking for your support in requesting an extension to the time commitment under the legislation for the medical conference to be held, moving that date forward to May 2016.

Only then can a properly structured conference be executed that will meet the good faith intent of the Bill that received unanimous support from all parties. The issues of diagnosis, treatment and surveillance are complex, requiring experts from various fields of science and medicine to provide input.

Looking forward to your reply."

The people to write to are:

1) Stephen Harper stephen.harper@parl.gc.ca

2) Justin Trudeau justin.trudeau@parl.gc.ca

And very importantly, to the federal Deputy Minister of Health which can be done at
http://www.hc-sc.gc.ca/contact/ahc-asc/deputy-sous-eng.php

If you wish you can also send cc's to your local party candidates.

================================================================

Thank you for taking action and for sharing this message with other Lyme patients in Canada! Every person counts. Together we are stronger.

Mundane tales

ADVENTURES ON SATURDAY

Hello, Life,
Today I heard that I'm "just a little old lady with a hole in her head" and need to be taken care of. Courtesy of Theo. Once I stopped laughing, I demanded that they put on a T-shirt for me immediately!
Sincerely, Marlene

Every day is an adventure if I get to spend it with some of the many people I love.

Breakfast --- a favourite part of our day! And the kids never say no to the opportunity to share. Last weekend we went to EggSmart again to have breakfast. Doesn't it look great? Our son bought us breakfast. All together now: "AWWWWW!"

And notice - Theo has developed curls these last few months! He always had stick straight hair like his mom. He said this week, rather than fight the curls, he has decided to embrace them. I love them!

WOMEN'S BREAKFAST

Twice a year, we get together - about fifty of us. (A week later, not the same day as the picture above, in case you are worried about our eating habits.)  The food is always amazing. The jokes --- well -- imagine when a group of women get together and start chuckling! Our group at our table had our own fun and jokes, we visited with other friends at other tables and generally enjoyed ourselves thoroughly, catching up with friends and acquaintances. Pam had a hard time getting us to be quiet! Today's speaker was talking about an amazing adventure. 

The topic today was about the Camino, walking the almost 800 km (almost 500 miles) from France across northern Spain to the ocean. Barb donned her gear, including backpack and complete with two socks clipped to the back, flapping to dry as she explained the packing, the plans, the needed items, and the sleeping arrangements along the route. We hung on her words, imagined sleeping with perfect strangers in a room, being stepped on by an inebriated man, trudging on day after day despite blisters, sickness, exhaustion and streaming rain. She started with a companion but within days found herself alone on the road. It started out as a hiking trip for her and ended as a deeply spiritual experience. 

FARMER'S MARKET

One of the great pleasures of summer is to stop by the Saturday farmer's market, fill up on fresh fruit and veg, meandering down the middle of Main Street and petting a few dogs along the way. Today was no different. Mid-morning found the four of us strolling down towards our favourite ice cream shop. They are closing this weekend, so we had to go down and get one more helping of the very excellent quality flavours offered!

Halfway down we stopped for Theo to try some Concord grapes. We all love them - we call them "glippertjies" in Afrikaans, which means that the sweet flesh of the grape easily slips out of the tart skin. Theo wanted to buy the large container but since the end of the market was near, we got a two-for-one. Off we strolled, each couple with a large bag of sweet, black grapes. We wandered down the street, and offered grapes to the few friends we encountered.

The leaves on the trees are changing, the quality of the sunlight is somehow sweeter, fuller, creating longer shadows which have a little chill when we step into them. Downtown feels alive, the large Jumbotron on the Garden Square pull people to the tables and create a vibrant, metropolitan feel. It is a joy going down there, getting a tea from T by Daniel or soup from the Little Ice Cream shop, and to sit and chat on the square, 

ICE CREAM

  

But our object was to visit our other favourite ice cream shop, where the owner knows us, greets us like family and knows our tastes and likes. He is closing this weekend for the winter, and Arno had to have one more rum-and-raisin cone! I didn't get pictures of all of us, but here is Theo's combination for today. Notice the size of the three scoops of excellent ice cream. He plans his tastes exactly, with a science of starting with one, flowing into the next and ending with a third.

We sat at the tables and chatted, watching the people stroll around the booths of the Farmer's Market at that end of the street and enjoying the visit.

SURGERY UPDATES
For those who want to know and didn't come here to read about ice cream and grapes!
Arno's stitch came out this week. The wound is more swollen underneath, but there is no infection. We think there is more scar tissue, since the two surgeries were only two months apart. Picture will be below the text, but it really is not gross!

We now have an appointment with an Endocrinologist who will determine next steps. We don't know if the Radioactive Iodine will be done or not.

My wound is healing well and thanks to the foam above my bed (see post), I haven't hit my head once! The bubbles seem to be diminishing too. When I pick up something heavy (not allowed, but I forget) there is a clicking inside my head. Maybe the bone settling like a broken arm.

The friends from around town have cared for us, fed us, brought us treats and more to sustain us. We can't thank them enough. We can't repay them. We can only "bless them and accept it" - quote by Biska. We are doing that, With every morsel we enjoy we feel warm and loved. Thank you.

FUNFEST
We know some friends have been planning a celebration for Sunday, getting together around a corn roast, salads, hotdogs and hamburgers. But we keep hearing little bits and pieces, about food donations, about a silent auction, about a magician and a jumping castle, about friends driving in ... I thought it would be a small potluck get-together for a few friends. Our hearts are full of appreciation as we fight the embarrassment about a fuss and many people working hard to create something special. The weather looks to be great. Watch this space ....

PICTURES
We made and cut out letters to attach to a backdrop to set up at the event today - we have to contribute SOMETHING! Bought a bag full of fun hats, boas, masks and a wig for people to put on and use the backdrop and their own phones or cameras to take fun pictures.

Arno's wound, just after the stitch came out on Wednesday.

Bubbles

These bubbles in my head --- yes. That's right. I'm officially an airhead. All insults welcome.

Seems that the air trapped inside the skull after the craniotomy will take a while to disperse. I have this dripping or popping inside my head, which started when I was still in ICU. Quite funny, really - sometimes louder than other times, and often it sort of echoes inside my mouth or teeth.

At first the sound was mostly on top of my head and I could put a finger on the wound site and almost "feel" the sound which happened at the same time inside my mouth. No, not a pulse, I checked! The rhythm is different. This is a whole other animal galloping around.

Lately it seems the sound had settled in my forehead, just above the right eye. If you tap a forefinger on your forehead, not too gently, you'll more or less hear the same sound. Sometimes it is much louder than other times. I've tried taping the sound - like having Pop Rocks inside my mouth - but nothing recorded. Guess it is all in the mind ....

Two weeks since surgery, and it is utterly amazing how much healing has happened. Mind you, I do keep bumping my head! It freaks Arno out. I hit it when getting into or out of a car, I hit it on the wall at the top of the bed. You know how a hurt finger or toe keeps getting bumped and in the way? Well, it seems to work with a head too!

Saturday I gave it a really good whack when settling on the bed to read a bit. The pillow I had ready, somehow moved down and whack! Arno was so upset, he went into our storage space, dug out a foam mattress cover and with some painter's tape in hand, set to making a bed buffer for his whacky wife. He'll probably not be happy about me sharing the picture, but here it is! Double layer foam, stuck to the wall good and proper without damaging it. I said if the tape stays a while, it might pull off the paint. "Then I paint the wall again!" he declared quite adamantly. Good man. Yes, I know.

The kids are having fun -- I now have two knit hats to add to the collection covering the bald spot, courtesy of Jaco and Chelsea! Sunday morning the pink one made its debut at church. But I had to send a picture to ask if it is the "acceptable level of floppiness" or if adjustments might be needed. I have no sense of style, see? They also brought a handful of socks, some with half a face of a cat or pug on either foot. The pugs went along to the fairgrounds on Sunday, and amused some friends.

FALL FAIR FUN
The annual Fall Fair is over for another year. I love the fair, the smells, the sights, the people and the displays. Only wish we can somehow get more interest and have more people to take part! It is not about winning; it is about putting something in place to look at, to enjoy, to share, and to learn or teach. Did you know you can enter all sorts of crafts and hobbies, including baking, jams and jellies, knitting or crochet, antique items, flowers (both cut and potted), and more? Seriously - it is fun! Gardeners can enter their vegetables, including a class for the oddest shaped vegetable.

Look at these huge pumpkins, for instance, grown by young men in the community. The stalks top left are sunflowers, and the competition is for the tallest one.

Every year for the last five years or so, I've had the joy of being close to one of the raptors that were brought to educate and entertain visitors. Arno usually took the pictures. However, this year, he had the chance of holding the Bald Eagle as well. She is much heavier than she looks!

You can see the steri strips still covering his wound site. The stitch comes out on Wednesday. This time the wound seems more swollen than the previous time. We just hope it will heal as well again! We have the Miracle Oil all ready for application.


THE PORK ON THE PORCH
Today I received a phone call, saying that one of the kind church friends had left a meal for us on the porch. I just happened to be out at that time.

An hour later I arrive home --- and find no covered dishes waiting to be taken inside. What to do? I already sent a thank you, but what could have happened to the food? Nobody would have taken it from an enclosed porch, surely? And suppose there are dishes to be returned? I would have to check in and brave any discomfort.

Within two or three text messages flying back and forth, we determine that the delivery was made one street over. Now what? Do I try to find the house owners? Do I go and demand my food back? Do I leave it and hope they will enjoy an unexpected supper?

Too many questions, and too many options! I'm not so sure I'd eat a meal that suddenly arrives at my doorstep without prior notice! Suppose they toss it out? No, I'm off to find my food!

Around the block I walk, cell phone firmly clutched in hand, watching the house numbers. Two doors down from the target house, a lady is washing her car and fighting one of the obnoxious bees that seem to be everywhere this summer. We exchange pleasantries, and I wonder if she might watch where I'm going.

The house appears -- covered porch in sight - and I can see the containers from the sidewalk. All quiet. Nobody home. So I pick up the containers and purposefully stride away, arms full and eyes forward. Did anyone watch? Will I be stopped for stealing someone's food? Maybe if I move quickly enough I can be away before they start questioning what's going on!

Around the corner -- switch arms -- breathe --- go! Old bod protests against the sudden activity, clearly still trying to pretend to need to rest every so often. But here's our house, and a table. Phew! Breathe, woman, breathe! Hubby chooses that instant to call. I'm giving an admirable impression of  heavy breathing on the phone and can hear his concern mount on the other side. "Wait .... (wheeze) .... food ... (hiss) ... key .... (whoosh) ..."

All's well that ends well, and the kindly prepared meal is where it is supposed to be! Pulled pork and the freshest rolls, cabbage salad and a shepherd's pie to freeze for later. The generosity of people is amazing, and all we can do will be to pay it forward.

Little does number # Behind-us Street know that for a brief, shining while today they had supper all prepared and ready for them - and just as suddenly, it was snatched away, promptly done out of food!

Dear Life,
Today I'm thankful for laughter and misunderstandings, for cell phones and text messages, and for the many kind people around me.
Marlene