Le Tour de Riley

In the last few weeks we have finally had splashes rather than drops in Riley’s recovery bucket! Although he continues to suffer from considerable pain and remains bedridden, he is also experiencing some significant progress!

As most of you know, Riley has always been an enthusiastic sports fan. His room is adorned with both hockey and golf memorabilia, and his treasured K2 Kung Fuja skis and golf bag occupy prominent positions in his bedroom. Prior to Lyme, Riley was active in the summer mountain biking, hiking and golfing and his winters were spent skiing and playing hockey. He even had the opportunity to play hockey in Sweden a few summers ago!

Unfortunately for almost a year now, Riley has been only able to drape himself over Christine’s shoulders to shuffle to the bathroom once a day for an assisted shower, and his excruciating pain and extreme neurological symptoms have robbed him of the ability to read, listen to music, watch TV, or engage in conversation.

Bedridden, he has spent months dissociated from his environment and body, barely aware of his surroundings. On rare occasions when the pain was reduced by a fraction, he would creatively meditate on past family vacations, friendships, sporting events, and other favorite memories. For the most part, however, he was far too ill to do anything more than pray and endure…minute by minute…day after agonizing day…with only fitful sleep to ease his burden. All of this we witnessed with a profound sense of impotence and horror.

Hope, however, has prevailed, and we continue to marvel at Riley’s unfailing tenacity in the face of profound suffering. His optimism and deeply-rooted faith, coupled with the expertise and compassion of his medical team, have produced the splashes we are rejoicing in this week. As I type this update, Riley is propped up in bed beside me transfixed by the pre-recorded July 14-17^th British Open golf tournament in Sandwich, Kent England! My role is to operate the remote (he does not have the finger strength to operate it) and to scroll past the frenetic commercials that are still too loud and startling for him. I have to pinch myself to actually believe he is watching golf again and doing so with the sound ON! At times I listen to the applause and turn to see a smile etch itself upon his face. His beautiful, wide-open, hazel eyes, track the movements on the screen and I well-up with indescribable gratitude! Taped to the top of the TV screen we have written the words: “Riley’s coming back!”

On the wall in front of Riley’s bed, there is a triumphant photo of cyclist Jelle Vanendert, both arms raised in victory, gaping smile, after a surprise win on a mountainous stage in Le Tour de France. 

 After watching TV for the first time in almost a year, Riley pointed at the photo, grinned, and whispered emphatically: “I feel just like that guy!” I thought to myself: “Riley you are that guy…except you continue to bravely climb mountains much steeper, with weather more severe, on a broken bike, with a frail body, on a course with no clear end in site, and no attractive women to kiss your cheeks as you mount the podium.

For the past few weeks, Riley and I have had a daily ritual. We huddle in bed to review the results from the day’s staging of the Tour de France, and we pour over the details of the next days cycling route and speculate on tactical strategies and likely stage winners. Today the Tour ended and we were both delighted to discover that one of our favorite cyclists, Australian, Cadel Evans had ridden triumphantly into Paris wearing the ‘maillot jaune’ (Tour winner’s yellow jersey). 

The “Tour de Riley” unfortunately, is far from being over, but we have seen some recent stage victories:  he is watching pre-recorded golf (other TV too startling still),  engaging in longer whispered conversations, smiling and occasionally even laughing without becoming too overwhelmed, asking to be read to and wanting to listen to soothing music, talking about the future (“maybe I’ll be a neurologist”), and most importantly…enjoying an enhanced quality of life! Physically he has slowly begun moving his hands more, re-positioning himself in bed, walking with assistance twice per day, and pushing himself to aid Christine more as she lifts him from the bed. The curtains in his room remain open a bit, and he can look out at the dancing trees without feeling electrocuted. Sunlight streams into the room and once again sparkles behind his eyes…he is coming back!

We remain, as always, extremely grateful and humbled by the continued generous support (financial and otherwise) of friends and family, and the care from our LLMDs (Lyme literate MDs). Each one of you, too many to name, remain a steadfast part of Riley’s team, and it is with you in his corner that he continues to bravely mount his bike and pedal up the next series of arduous climbs and weave his way around blind and slippery corners on the treacherous descents. Although there is still no finish line in sight, and his physical symptoms continue to plague him in unimaginable ways, at least now Riley is able to lift his head on occasion, smile and take in moments of renewed beauty and joy.

With affection,
Terry

An added note from Christine....

Two days after Terry wrote the above paragraphs for the blog, Riley asked Evan if he could pick some instrumental songs from his iTunes playlist that were not too crazy. He was hoping to try listening to some music. That night Evan went in with the iPod to see if Riley could handle listening to a few minutes of the music he had chosen.

Later I went in to see how it was going and found 2 boys cuddled in the bed, sharing one set of headphones! Evan was gently patting the corners of Riley’s eyes with a kleenex…tears of joy were streaming down his cheeks.

Here is what Riley had to say:

“It’s unbelievable. That’s the most beautiful gift I’ve ever been given. It’s like coming out of solitary confinement and into the light.  I haven’t listened to music in over a year. For so long even just thinking about the sound of waves on the beach was too startling to my brain and now I just listened to music again and its OK.  It’s indescribable. It really is like being reborn.”

Since then, Evan has also been downloading audio books for Riley to listen to and Riley has enjoyed hours of stories on his iPod.  It is amazing!!!

When relaying  Riley's progress to Dr. H in California this week, I asked him if he was happy to hear this good news about Riley...he replied, "No- I'm not happy.  I am very pleased, but I won't be happy until Riley is fully better and back to living life as he should be." Thank you for a  doctor who is in for the long haul and knows we still have a long way to go.

In the midst of all this wonderful progress, Riley can be watching golf one minute and the next minute overcome with heat attacks, tremors, gut wrenching pain or a piercing headache....it is a rollercoaster ride for sure, with many months of treatment still ahead....but our Riley is coming back- bit by bit!! 

 

All this is happening while Alberta health experts have publically announced that ticks carrying Lyme bacteria have recently been confirmed in Alberta.  Although they say to be on the alert for ticks, they are also quick to say that there is only one documented case of Lyme disease since 2008 and only 20 cases since 1989!

Funny- we personally know at least 10 other patients/ families right now in the same situation as us....but because their tests were conducted in the USA- they will never be part of  Alberta Lyme disease statistics.

When will they stop tap-dancing on the deck of the Titanic and admit that our testing procedures are grossly outdated and wildly inaccurate. Lyme afflicted individuals like Riley get misdiagnosed (or go undiagnosed), suffer unnecessarily, and are forced to cross the border for adequate testing and very costly out of pocket treatment! 

Many of you have asked us if we plan to make our experience more public at some point and use Riley’s tragic story as a catalyst for discussion/change within the medical system.  Up until now, we have been reluctant to do this for many reasons….one being our need to focus our full attention and limited energies on Riley’s care and healing.

However, as the news of Lyme infected ticks in Alberta has made headlines the past couple of weeks and so much misinformation is circulating- we decided to respond to the requests from media to be interviewed.  If we can be a small part of the necessary change that needs to come, or if our story will help even one person avoid the lack of diagnosis that has been so disastrous for Riley- then it is worth it to speak out.

We have been told that the Calgary Herald is running a story this weekend and will highlight Riley’s journey with Lyme disease.

For those of you not in the Calgary area…. http://www.calgaryherald.com

Warmly,

Christine