Friends and Family ...     

     


This Thursday, June 21st Member of Parliament- Elizabeth May 
will introduce a Private Member's Bill calling for the 
development of a national strategy to address the challenges of the timely recognition, proper diagnosis and treatment of Lyme disease. The Bill also calls for funding for provinces and territories to implement the strategy.


    
                           
       Speak out for Riley and thousands of others    
                     suffering from Lyme Disease

                                         

Time to take Action

Lyme Disease is on the rise across Canada

                                         

Ticks are not going away


Opportunity to have our voices heard


Stop government and medical politics that are  getting in the way of proper diagnosis and  treatment    

                                                                                                                          

    
                                            

The Bill is multi-faceted, with detailed timelines that require adherence by the Federal Minister of Health at various stages, including when the conference must be convened, when the health minister would report back to MP’s, timeline for posting new national strategy on the official gov’t website, and many other critical details to ensure that the job is done right.

Ø  A press conference will be held at 11:30 am this Thursday, June 21st, 2012 in the Charles Lynch media room, Parliament Hill, Ottawa.

Ø  There will also be a reading of the bill by Elizabeth to our federally elected MP’s later the same day.

Ø   Nicloe B.- teenager and Lyme Disease victim- will be present a collage of photos at this press conference….a voice for all children, adults and families living with Lyme.

Ø  Nicole and her mother have been in touch with Riley these past couple of years offering support and encouragement. Riley’s photo will be on this collage.

      Although Elizabeth May is the leader of The Green Party, this bill is not party specific and is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the massive roadblocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care.

Excerpts from Elizabeth May’s statement on her web site give a little more context to her decision to offer support to the growing cadre of Canadians who are ill or disabled with lyme disease.

“Lyme disease can be devastating. 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,” said May.

Warming temperatures are leading the increase in range for the black legged tick.  Scientists are endeavoring to create enhanced surveillance tools, such as risk maps.  A national strategy could support this work and ensure that people can be vigilant in areas where the tick is becoming established.  If doctors know that the local risk has increased, they can help with early diagnosis and prevention.

Early treatment with antibiotics can avoid potentially serious long-term disabilities or even death.  Lyme disease requires improved diagnostic testing and proper treatment to avoid the long term effects of Chronic Lyme Disease.

“Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive,” said May.

How can each one of us help Elizabeth pass this Bill?

We are asking everyone to pass on this info to friends & family (wherever they live in Canada), and do the following to get this National Lyme Strategy Bill passed:

• Contact your federal MP and if at all humanly possible set up a face-to-face meeting.
• Post a comment on Elizabeth May's website to show your support 
• Tell  your story, and how Lyme disease affects you, your family or your friends.
• Tell MP that you know others across Canada in the same predicament 
• Use information from our blog (links at top of page) to highlight the urgent need for improved testing, doctor training and effective clinical diagnosis and treatment
• Tell MP that you, your family or friend(s) are being denied the right to health care and the devastating impact that has had on their recovery, family life and finances
• Ask if you can count on their support to get this bill passed.
•  Make sure your MP knows this is not just a ‘Green’ party bill, it is a bill that could affect every single Canadian including themselves, or their loved ones.

      As an example of what should be communicated to politicians, read a letter  

       written by David Cubberley, the B.C. Director of the Canadian Lyme Disease       
       Foundation.to the B.C, Minister of Health. In it he provides a good synopsis of the  
       situation facing more and  more patients, not just in British Columbia, but also across 
       the rest of Canada.  Accurate information is being withheld from doctors and from the general    
       public. Testing is woefully inadequate. And many are suffering. Come on Canada, let’s get our 

       act together. Don’t run  away from Lyme disease!

"British Columbians are being denied access to medically necessary care due to flawed tests and an induced skepticism about Lyme’s prevalence promoted by the CDC on the U.S. model. Actions are needed to provide doctors with appropriate diagnostic tools and to free them to recognize and treat Lyme effectively when it appears in their offices. This is not difficult to do, but it means getting out from under the inadequacies of the BC CDC’s suppressive approach to this disease. And this needs to be done before the disease becomes an epidemic."

[From Lyme Disease Debacle: Let's End The Denial}              

            Remind your MP to vote with their conscience as this is a private member’s bill; 

            no party vote needed.

            Contact friends, family, acquaintances, people in your local communities. 

            Let them know how important this is to thousands of Canadians.

           

          

     How many more will be bit by ticks this summer and go on to suffer the devastating impact of unreliable testing, ignorance on the part of doctors, months/years of health care money going into the pursuit of a diagnosis.

      Feel free to include the link to this blog as an 
      example  of what is happening to our children suffering with Lyme Disease. They need to be able to put faces to the stories.

THANK YOU!!!

A Day in the Life of Riley

June 4, 2012

By the time I arrive home from work these days, Riley has expended most of his energy getting through the afternoon routine; the awkward dance he shares with Christine in order to shave, shower, drink soup from Dixie cups, and manage the plethora of daily pills and IV medications.  Each step has been carefully choreographed to minimize neurological symptoms startling him (which Riley has likened to being electrocuted)…in essence they are waltzing through a mine field.

Fortunately Christine has become a “Lyme Whisperer”, discerning Riley’s needs from subtle non-verbal cues and miniscule changes in his day to day functioning.  It is uncanny to watch the two of them communicate so effectively and lovingly without words.  At times, I feel isolated and impotent in my attempts to care for Riley.  Unlike Christine, I miss the signals Riley sends telling me he needs to whisper something to me, be re-positioned in bed, or use the washroom.  In the evenings, most of Riley’s communication comes from simple nods of his head; complicated by neurological tics that force his head to weave in horizontal, figure of eight loops, making a yes also a no and vice versa.

Some days Riley’s heroic battle with Lyme sucks the life out of me.  I find myself mired in a kind of spiritual quicksand where frantic attempts to free myself from despair leave me wallowing even deeper. Screaming wildly at the injustice of his illness, I feel a compulsion to pound my fists into the earth or flee to some faraway place where Lyme cannot find me.  I am frightened that I am beginning to lose the memory of Riley’s voice...deeper than my own, and so ripe with kindness.

Grief is a constant companion, and although tears don’t come as easily for me now, occasionally there is a torrent, with relief to follow.  I play “hide and seek” with Hope daily, but sometimes she’s far too cleverly hidden.  Perhaps, though, Hope is not hiding at all, just tenderly caring for Riley in her quiet, unassuming manner...an angel without a face.  

For over two years Riley has endured unspeakable pain and suffering, and been imprisoned in bed, yet he remains as hopeful as ever and resolute in the belief that his health will be restored and he will one day re-enter the world.  Last week he spent several hours with Christine forcing words out of his immobilized mouth (opening his mouth is still very painful and startling) in order to describe his inner spiritual journey.  He stated that despite the tightness in his face inhibiting smiling and giving others the impression that he is distraught, he “wakes each morning with joy”; grateful that he is...still alive to greet a new day, supported by loving family and friends, able to listen to audio-books, watching hockey playoffs, getting physically stronger, etc.

Riley, with his wisdom, courage, and faith, continues to teach me that suffering and joy are both necessary partners in this gift called life.  I cannot begin to imagine the spiritual transformation he is undergoing through his devastating illness.  Riley is a masterpiece in progress and I am a humble witness.

“What would it be like if you lived each day, each breath, as a work of art in progress? Imagine that you are a masterpiece unfolding every second of every day, a work of art taking form with every breath.” -Thomas Crum

Love and appreciation, Terry

Mini-update from Christine on Riley’s treatments and progress:

We have now been in the condo for almost 2 months, and we can see small but noticeable improvements in certain areas for Riley. During the winter at our house, he was becoming less “present” and seemed locked away in a body sliding downhill.  During the last several weeks he describes, “Feeling less weighed down, and less like his body is collapsing in on itself.” Even though he continues to experience extreme sensitivity to touch and his jaw remains so tightly closed…his face isn’t as swollen and the grip on his eyes and forehead has lessened.   In our last blog entry we described his toes being clenched tight with pain all the way up to his groin, and uncontrollable tremors. This has almost disappeared.  We take this as a good sign that perhaps the toxic load is decreasing and the move out of our house was a good step towards healing.

He is also gaining his physical strength- stronger posture, hand grip and mobility in bed, walking with his walker several steps every day, brushing his own teeth (with assistance) and hoping this week to try sipping his drinks and food using his own hands. These are such mundane, “take for granted” tasks in the real world- but for Riley they are monumental. To have been completely dependent on others for every task related to daily living- it does feel like a real accomplishment.

The area that we ask for continued thoughts and prayers, relates to the ongoing assault on his brain. He is experiencing increased neurological symptoms….consistent with the Bartonella infection wreaking havoc.  This shows itself with bouts of extreme agitation, inability to focus words and thoughts, unusual mood swings, and frustration with the smallest of changes in routine-behaviours so foreign to the Riley we all know. He does an incredible job managing these symptoms but they do make him feel out of control and so trapped.  We are beginning a different antibiotic  this week, hoping to target the Bartonella more effectively. Please pray that he responds to this medication, and without too much die-off/increase in the already horrid symptoms he is coping with in this area.  He said to me that he would be ready to do so much more if his brain wasn’t holding him back.

View from Riley's Balcony at the condo

The golf course where Riley first fell in love with the game of golf....now he has a room with a view of the bunkers on the Front Nine.

A Day in the Life of Riley
ONE DAY WORTH OF MEDICATIONS
103 pills to swallow
7 Bags of IV medication-infused over 13 hours
3 needle injections
drops, sprays, potions and the list goes on.....

A Day in Riley's life also includes a symphony of background helpers keeping us buoyed up for what seems like an endless journey.
Thank you to everyone who offered help at the time of our move to the condo. The calendar of helpers...you know who you are, have also been lifesavers -running errands, bringing groceries, staying with Riley so Terry and Evan and I can get breaks. IT REALLY, REALLY has made a world of difference.  
As always- thank you.