“It always seems impossible until it’s done”
                                                                Nelson Mandela


What seemed impossible a year ago?    Everything seemed impossible!

It was impossible to imagine Riley sitting up in bed, drinking a glass of water on his own.

We could not imagine a day when he would walk unassisted to the bathroom.
We wondered if the facial paralysis would ever ease, allowing Riley to once again speak, chew, frown, smile, and cry.

Our boy who had been so conversational, always eager to tell a story or talk about his day,  always ready to listen, and share a laugh…a year ago, it was impossible to even remember what his voice sounded like, much less imagine an actual conversation.

Would he ever sleep through the night?
Would the nausea ever subside?
Would the constant pain in every muscle, joint, bone ever let up?

California- 2011

2011 in California
Riley being assessed by a neurological therapist.
Riley was not able to hold his head up or keep his eyes open

The following quote is an excerpt from a daily journal I keep, tracking Riley's symptoms:

Written June 11, 2012
“No whispers or connection in the early part of the day….almost non-responsive, agitated by voices around him. Motioned to his stomach, saying the pain was very bad. Later- tried to watch the Stanley Cup game and became overwhelmed by the end of the game. The noise, the stimulus- too much. Tremors in his head bad tonight too. I can’t tell if he is nodding “no” or it’s just his head wagging back in forth in distress.”



“It always seems impossible until it’s done”

Much of what seemed impossible a year ago, two years ago is now “done”.
Riley is free from many of the horrors he endured for so many months.
He has made tremendous progress, and is experiencing an increased quality of life.
The relief for all of us is hard to describe and at times the past seems surreal.  We wonder sometimes how we lived through those darkest days without giving up.
The power of the human spirit, and the will to survive is a great inner force, and we have certainly been witness to this spirit within Riley.

When we arrived at the Hansa Clinic last fall, we listed over 55 symptoms that plagued Riley on a daily basis. Many of these are completely gone, while others have significantly decreased in intensity.  Narrowing in on what is the root cause of his lingering symptoms, and determining the best treatment options, is now key to his full recovery.

First days at the Hansa Clinic -reviewing Riley's symptoms with Dr J.

Intense treatment days with Dr. J.  So much progress was made in this room

                                         Kansas 2012- First days out of the wheelchair





              “The Man Who Moves Mountains, begins by carrying away small stones”. 
                                                                                                             Confucius   
                                                                                                                                               

Many times during the last 3 years it would have been easy to sit at the edge of the mountain and say, “We are done, we give up. This mountain is too big and we cannot move away one more small stone." However, we keep moving stone after small stone, even when we aren't certain which one to carry away next.
We are unwilling to let the mountain “win”.

During this illness, our motto has been:
Leave No Stone Unturned.

Keep seeking answers, keep researching, keep pushing doctors to think again, try again. Each doctor, each article, each treatment intervention, has been one more small stone carried away from the mountain. This has paid off!  We are absolutely elated with Riley’s progress, and we are determined to keep carrying away the stones, until the mountain in his way is gone.

He is still experiencing a list of symptoms that hinder his full recovery. His facial symptoms cause severe heat,  redness and at times swelling. He is never able to be away from the coolness of a fan.  You might be inclined to think….”well that’s not so bad to live with, given how debilitated he was for so long? A little heat in the face is manageable”.

It is in fact very debilitating.

So Hot. So Red

A particularly bad day with lots of swelling

He also has limited energy, jaw and dental pain, headaches, fatigues easily after exertion, and needs oxygen support several hours per day.


Thankfully his medical team, although perplexed by the severity of these facial symptoms, are narrowing in on what seems to be at the root cause of this unusual presentation.
Riley received the CCSVI treatment in February, after MRIs and CT scans confirmed compromised blood flow. This procedure improved the circulatory issues from the neck down and gave almost immediate relief from some of his other symptoms.  However, it failed to relieve the facial heat and swelling. In fact, at times the heat seems worse than prior to the CCSVI procedure.

How could it help so dramatically in one area of his body and not the face?
Dental x-rays, MRI, and CT scan are confirming that the jaw bone, palette, and styloid bone (right next to the jugular veins), have all shifted position during the time he has been sick. The CT scan showed severe occlusion of the upper left jugular vein (an area not treated by CCSVI), most likely caused by these structural abnormalities.  Comparing pre-Lyme disease dental x-rays with his present day bone structure is disturbing.

The suspected cause: 2 years of facial paralysis.

The surgeon who performed the CCSVI  explained that due to the heavy load of infection and toxins in the blood, the veins of a chronic lyme patient are similar to the plumbing in a backed up kitchen sink- full of sludge which compromises proper blood flow.  In addition, Riley's upper jugular veins also have "a kink in the pipe" caused by the messed up bone structure.  Picture a garden hose that gets stepped on, causing pressure and bulging.

He needs treatment to correct these structural issues. After countless hours consulting with doctors both here in Canada and in the USA, we have been referred to a clinic in the USA. They specialize in the diagnosis and treatment of cranial facial issues related to vascular disturbances and autonomic dysfunction.  Whew- that’s a mouthful.
Who would ever have thought such a place existed?

We hope to take Riley there in July, and would appreciate your thoughts and prayers. If Riley responds favourably to these treatments it will likely mean repeat visits to this clinic for “tweaking” along the way. The treatment will include appliances built for his mouth and neck.
This is not Lyme disease we are dealing with, but rather the damage caused by the longterm infections.

We are hesitant to go ahead with one more costly treatment plan with uncertain outcomes, but we are determined to tackle these last symptoms, so Riley can continue to heal.  It feels like we are close.
The specialists who will treat Riley are having success with some very unusual symptom presentations. This is hopeful- because everything about Riley's case is "unusual".

We wish this could be done closer to home.
We wish some of this would now be covered by Alberta Health Care.
We wish Lyme disease had not presented itself in such a cruel and unusual way.

We are determined to “leave no stone unturned”.
We have been able to do this so far, because of all of you, our family and friends who have stood by us.
We are also so grateful for the “Riley Fund” that has allowed us to keep plugging away at all of this. We would be in a very different place on so many different levels without this practical help.





Parting Shots...The Joy of Recovery!

BALL HOCKEY TEAM CHEERING ON RILEY'S RECOVERY 

THE GUYS FORMED A TEAM WITH LYME GREEN JERSEYS, ALL HAD "LINDBERG" ON THEIR BACKS, AND INCLUDED RILEY'S HOCKEY #9 IN EACH OF THEIR OWN NUMBERS!! 

                                       
                                         WHAT AN INCREDIBLE GROUP OF GUYS

                             RILEY AND AUSTIN....BEST FRIENDS SINCE PRESCHOOL

Spring! A Time of Renewal

Serenaded by a motley choir of Spring birds, Riley and I walk what we affectionately call "the loop"; a familiar set of neighborhood blocks that encircle our home. These walks have become a nightly ritual for us and a blessing! Once "the loop" was an arduous hike for his small child's legs; host to his scooter, rollerblades, training wheels, and skateboard; and finally adorned with homemade jumps for his mountain bike. Today feels like we've gone back in time...the short walk has once again become an adventure for a set of 19 year-old legs rebuilding from Lyme.

Since returning from further medical appointments in both California and the Hansa Clinic in Kansas, Riley has worked courageously and painstakingly to maintain his daily physiotherapy, and to nourish his body with the first solid food in two years! His emaciated frame, now just a memory, is concealed by an additional 30 pounds of muscle tone and vitality! We talk expectantly about the day to come, when he will once again cycle, skate, ski, and golf!In my work as a psychologist, I have been privileged to witness acts of profound transformation. When it comes to Riley's phenomenal progress, however, I am still a bit stupefied! I still feel startled when he walks into the room and begins a conversation with me..."Is this my son who for two years could neither walk nor talk!"

It has been through the reactions of others that I've begun to shake off my stupor. On our daily walks, neighbors and friends who catch a glimpse of Riley, race from their homes to greet us with disbelief and in sock-feet! They burst into tears, hold his face tenderly in both hands, and hug him like Lazarus raised from the dead.

Some other signs of physical and cognitive renewal include:   

At the Calgary Auto Show

- going to Evan's recent plays and Kiwanis Festival performances
- attending a Flame's game with friends
- perusing McLaren sports cars at the recent Calgary Auto Show
- dining out with his Grandma in Canmore- first time at a restaurant in 3 years
- taking back some daily routines such as showering – without assistance
- Moving back into his basement bedroom in our own home
- Visiting  with family and friends
- Seeing "Skyfall" in the theatre

And- just this past week- disposing of the commode (bedside toilet), walker, and bath bench!

Although we rejoice in this miraculous rebirth for Riley, we are still working tirelessly to tackle the remaining symptoms that hold him back from an unhindered life. He is still plagued by circulatory issues including a hot, burning and swollen face that continues to be excruciatingly painful when he tries to smile, laugh or yawn. As a result Riley takes a portable fan everywhere he goes, and we travel even on the coldest days with the car’s air-conditioner on full blast.
 

So there will be more trips to Kansas in the next weeks and months, to safeguard Riley's recovery and further interventions to address his circulatory issues.

 Let us not lose sight, however, of the miracle that is taking place, and of the fact that Riley's care in the U.S.A. has been life-saving, prayers have been answered, and renewal is occurring! Soon, too, the recent snowfall will melt and all that has lain dormant in winter's icy grip, will sing itself to the surface and unfurl its’ vibrant colors.

With gratitude and thanksgiving to all of you who continue to walk so faithfully beside us on this   journey.

Terry

___________________________________________________________________________

Little medical update from Christine:



Post-Op-trying to stay cool with fan. Tired Momma.

Two weeks ago, Riley had the IV Port-o-Catheter surgically removed from his chest. For over 2 years he has been receiving IV medications through that port. It became infected and needed to be removed on an emergency basis, but he was ready for it to come out, so we are glad to have that over with! When we arrived at ER to address the infection, the triage nurse was certain we must be there for his burning, red face. She thought at first he must have had an allergic reaction to something. We assured her that his face was “normal” (ha ha) and that wasn’t the reason we had come. The team of interns, residents, ER docs, had a few hair-raising comments about his diagnosis of Lyme disease, but we were prepared for that, and managed to successfully dodge the bullets.

As many of you know, Riley and I travelled to a clinic in California in February. We were there for a week of extensive testing (specialized MRIs, CT scans, etc) to determine the condition of the veins in his brain, neck and chest area. With some Lyme patients, the veins become compromised and constrict blood and oxygen flow (among other things).This can lead to autonomic nervous system issues-thermal irregularities, including cold extremities/ heat intolerance, fatigue, sleep disturbances,  as well as neurological issues, all of which Riley has struggled with these past 3 years.

The testing did confirm issues, and so while we were there Riley underwent a surgical procedure to address this constriction. He has noticed a dramatic increase in blood flow to his hands and feet, increased mental clarity, better sleep, improved eye strength and also increased muscle strength. The facial issues (what we were really hoping would change) have improved minimally. CT scans have shown there is still a problem in the upper jugular vein at the side of his skull, near his jaw bone.

So –more tests, more appointments, more decisions to make as to how best tackle this very debilitating symptom that remains so stubborn- and of course, with no medical specialists here who even believe he has Lyme disease, and how that has impacted his health in so many areas. We are thankful for the couple of private doctors here who work closely with his team in the USA, but in terms of specialists and recognition of the care he needs- that is still non-existent.

Our days are very full with the business of rehabilitation. It is a long way up from Ground Zero.
Riley got sick a day before his 16th birthday, and he is now almost 20. That is a huge passage of time, and the rehabilitation of body,  mind and spirit- is really time consuming and delicate.
As our doctor in Kansas has said, we need to pay attentiion to the trauma of this experience and walk gently and patiently with all aspects of healing.  We are all learning how to pace our days, how much is "too much", and when and how to help Riley reconnect with the world around him.

He is very busy with physiotherapy, occupational therapy, massage, doctor appointments, and other therapies deemed appropriate.
We are inpatient at times for "all things Lyme" to be a distant and faint memory.
We are thankful for each step forward.

Warmly and with appreciation for all of you
Christine

 

The Promise of a New Year

"Go West, young man, and grow up with the country"
-John B.L. Soule (1851)

We crest the steep hillside as the evening's soft light begins to dance shadows over the rolling foothills. Bold, Malbec-coloured clouds spill themselves across the inky sky as the endless, snow-laden peaks blush and stagger in a joyful, drunken dance. Inside the warm cocoon of our vehicle we stare, transfixed, until the light show fades behind a shimmering curtain of stars.

To my right, wide-eyed with wonderment, Riley greets each familiar bend in the road like a long lost friend.  It is his first trip to Canmore in years, and he is savoring every moment! The silence is punctuated with his exclamations: "spectacular"..."even more beautiful than I imagined it to be"..."unbelievable!"  We are headed West, as a family, to spend New Year's Eve with my mother, sister, brother-inl-aw, niece, and nephew.  It is a favourite  tradition, but one that Riley has been too ill to participate in for years.

2013, a New Year, and one ear-marked for recovery and renewal! The miraculous progress Riley made in Kansas has held and he has been slowly improving since his arrival home. With his tenacious spirit and the addition of physiotherapy (at home presently but he starts a rehabilitation program this week...January 14th) , Riley has now walked outside for half a mile; made his way up and down three flights of stairs; tied his shoes, put on shirts and done up the buttons, and  showered standing up unassisted! He has been to a quiet evening church service, watched fireworks, attended a theatre production of A Christmas Carol, and hosted a guy's movie night.

 Winter Walk- Downtown Calgary

New Year's Day walk in Banff with Grandma Lindberg

It has been heartwarming to  watch Riley reconnect with family and friends. He received the following e-mail after a recent visit with close family friends Carmen and Jim:
" Words cannot describe how we feel. It was wonderful to see you, to lay eyes on you after all this time. You seem so fully 'Riley'...it took my breath away!! Your inner beauty shines through so brightly, as it always has...it is so very apparent to me that far better things are waiting for you. That your whole, beautiful, rich life awaits you."

The NewYear will not be without significant challenges, however, as Riley still has a number of  debilitating symptoms that plague him daily. In particular, his face continues to burn painfully and it remains partially paralyzed, causing him excruciating pain when he smiles fully or laughs out loud.  Unless he is outside in freezing weather, Riley has to have a cold fan on  his face at all times. We are currently exploring options to determine the neurological roots of his facial symptoms.

Despite a high caloric diet, Riley also struggles to gain any weight...his 6' 1" frame weighs a meager 115 lbs ! Although he has added small portions of soft food to his diet, he still exists  primarily on Dixie cups of rich blended soup and smoothies.  In order to maintain his progress and further reduce symptoms, he will be traveling back to the Hansa clinic with Christine later this month.

In addition, in order to boost mental clarity  Riley has been benefitting from four hours per day of supplemental oxygen.  He is also seeing a biological dentist to deal with massive inflammation, possible infection,  and to have his impacted wisdom teeth removed.

Although the road to Riley's full recovery  remains somewhat elusive, we rejoice daily at his recent transformation, and give humble thanks for the countless acts of generosity and kindness bestowed upon us by so many! May your New Year be filled with moments that take your breath away and remind you of all that's wonderful in this world of ours! May any sorrow you experience prepare the way for deeper joy.

Terry and family

"Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter.  It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place.  It pulls up the rotten roots, so that new roots hidden beneath have room to grow.  Whatever sorrow shakes from your heart, far better things will take their place." - Rumi

DAYS OF MIRACLE AND WONDER

Winter has drifted into town but despite shorter days and an early dusting of snow, a few golden leaves cling tenaciously to the branches outside the window; a memorial to our prolonged summer.

As many of you know Christine and Riley have been away for over a month now, attending a medical clinic in Wichita, Kansas.  Having heard a number of encouraging reports about the Hansa Centre and its’ treatment philosophy from other Lyme-sufferers, and after consultation with Riley’s medical team, they left Calgary with a mixed bag of trepidation and cautious optimism...no Yellow Brick Road to follow and no promise of a wish-granting wizard. Fortunately, unlike the fraudulent “puppet king” of OZ, the Kansas clinic and its’ staff have more than lived up to their reputation.

Remarkably, within a few days of commencing treatment, Riley reported a reduction in pain and a loosening of his facial paralysis. Under the sage-like care of the doctors and staff, he began speaking in short sentences using a “normal” voice instead of the whisper he had resorted to for two years! Riley also stood up and began walking for the first time without support!  To put this in perspective, when they arrived in Kansas, he had been entirely wheelchair bound except for one short, heavily assisted, shuffle to the shower each day. 

Initially it was difficult to trust these changes...anticipating a regression or worsening of symptoms. If we allowed ourselves to believe Riley was actually improving...what then?  Could we afford this kind of vulnerability? Imagine for a moment you are in a killing drought and as a daily ritual you hike to a faraway well hoping for water...you select a stone, say a fervent prayer and drop the stone into the inky black depths, you hold your breath and wait for what feels like an eternity, only to hear the empty clatter of the stone as it hits rock bottom. You repeat this ritual unsuccessfully for years…until one day you drop another stone half-heartedly into the well and as you turn in haste to leave you hear what sounds like a splash; shock and disbelief follow.  Cautiously you try again and there it is…a splosh, a splash…a miracle…and then the tears come!  Faith, however, is the belief that the water will still be there tomorrow.

The water in the well continues to flow,  To our great amazement, Riley continues to progress. The chest, bone, and joint pain that plagued him continuously for three years is now gone!  When they arrived at the clinic on October 11th, Riley listed over 40 symptoms in varying degrees of intensity. 18 of those symptoms are gone, and many of the others are decreasing.He is speaking conversationally, and the decrease in his facial paralysis has allowed him to begin chewing morsels of soft food again, and even manage a slight smile at times.

The toxicity in Riley’s brain has been reduced...”my brain feels like it is starting to wake up and the synapses are firing again”.  In addition, on October 31st, Riley phoned to wish us a “Happy Halloween” and then in an excited voice told me that he had been walking with a straight back and swinging his arms without any assistance!  Shortly after this Christine sent a video of Riley walking slowly but purposefully down the halls of the clinic; breathless and with tears streaming down my face, I hit the replay button over and over again…”my son…my beautiful son…walking again…so tall…thank you God…he’s coming back!”

It’s difficult to describe the elation I felt watching the video of Riley navigating the halls of the clinic on his own two feet.  I have not been that captivated watching someone walk since the age of seven when I witnessed the grainy, black and white images of Neil Armstrong leaving the Lunar Module and stepping onto the moon for the first time; “That’s one small step for man, one giant leap for mankind”. This moonscape now pales in comparison to the sight of my 19 year old, bed-ridden son, moving through his world without a wheelchair or a walker!

     These are the days of miracle and wonder

      This is the long distance call

      The way the camera follows (Riley) in slo-mo...

      And don’t cry baby don’t cry

      Don’t cry...

              (Excerpt from Boy in the Bubble by Paul Simon)

                                   Riley on his 19th birthday- a very joyful day in Kansas!

                                                Riley visiting with his cousin Krystal

The road to restored health for Riley still appears long and daunting at times, but we are joyfully celebrating every recovery milestone. The brilliance of Dr. Jernigan, and the compassionate care of the staff at the Hansa Centre have added fuel to Riley’s determination to return to full health. Days at the clinic are full and tiring for Christine and Riley, but also rich and rewarding. Without the prayers, kind thoughts, and financial support we’ve received, however, none of this would be possible. So it seems only fitting to leave you with these words from Riley:

“Hello everyone... just wanted to say thank you so much for all of your thoughts and      
prayers and good wishes. I miss you all so much and I’ve been thinking and praying
for all of you every day. Thank you so much and love you all!”

With thankful hearts,

Terry, Christine, Riley and Evan

                                            Happy times with our Riley....pre-Lyme!!

                             Dreaming of a time when he can take hold of life again and soar!!

Hiking in the Rockies

Enjoying the View

Lake O'Hara

It's Fun to Dream....thanks Uncle Ian- London, 2008

At the ODR (Outdoor Rink for you non- winter types)

                                             Outside Buckingham Palace- Summer 2008

Fall Musings

First heartfelt thanks to each and every one of you who soldier on with us and offer support even when we retreat and fail to update the blog or return your calls. Sometimes we lack the words or the energy to speak them.

Fortunately there is always another day and moments of beauty that cleanse us and rekindle our spirits: sunlight on our porch at the end of a crisp Fall day, the warm sound of old vinyl, biking along the moonlit river under an umbrella of stars, ice cold beer at the end of a dusty hike, rich conversation with close friends, an old hymn sung with conviction...

More inspiring than these moments, however, is Riley’s resiliency as he continues to face his exile and suffering with joy and gratitude.  He remains saint-like in his ability to see the best in his situation and to cultivate hope and celebrate small signs of progress.

Last year Riley listened as I read articles about the Tour de France and this summer he was able to watch the race itself!  Appropriately, a painting hangs on his wall that depicts one of the legendary mountain stages on the Tour as if Riley were riding in it himself...an arduous climb lies ahead of him, but he has the yellow leader's jersey!  You and I line the road cheering raucously!

Breanne, a grade 12 student, painted this for Riley as part of a school project on Calgary teens afflicted with Lyme disease. Her sister Danielle has been bedridden and battling Lyme disease for three years. Breanne captured Riley’s passion for sport and his longing to sit on a bench one day…symptom free.

Although still plagued by severe neurological symptoms and facial muscles that are in essence paralyzed…making it next to impossible to speak, swallow, or show facial expressions, Riley has slowly gained more physical strength. He is now able at times to hold a Dixie cup, perform simple actions with his arms and hands, and walk a few steps each day with the aid of a walker.

Recently he was given an iPad, and although too physically exhausting and startling to use on a consistent basis, his eyes lit up the first time he typed to us using the "magic" wand...thoughts and feelings surged over the speech barrier, flooded across the tablet, and presented themselves to us; words...sparkling jewels, portals into Riley's soul! He keyed the word "liberated" several times! Riley’s use of the iPad has allowed him to accurately describe his symptoms, communicate more deeply with each of us, and to share his musings related to the books he listens to or the movies/documentaries (new for him!) he watches. We have been reminded that our dear Riley is still “in there” and still believes in his own words “that together as a team, boosted by the boundless support of all those around us, we will win this battle and stand victorious on the hill of triumph, with our hands thrust in the air!”

In addition, we (Christine deserves a Ph.D. in Lyme disease!) continue to explore a number of supplemental medical options designed to enhance Riley's recovery. As a result, it now appears that Riley and Christine may be headed to back to the USA for a month of treatment in October (stay tuned for an upcoming post with more detailed information). Although there is no silver "Lyme" bullet, we remain optimistic, along with Riley that he will continue to heal and eventually return to the world he loves so dearly.

Thanks again to all of you! Without your prayers, love, support, friendship, and generous offerings of time and money, we would be unable to continue to offer Riley the care he so desperately needs and deserves.

Affectionately,

Terry and family

           

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.