PLEASE WATCH: CBC TV -"THE NATURE OF THINGS" David Suzuki's documentary on Lyme Disease

HELLO FAMILY ANS FRIENDS!
 

We wanted to make you aware of an upcoming documentary about Lyme Disease.
Airing on CBC TV: David Suzuki, The Nature of Things.
The name of the documentary is Ticked Off: The Mystery of Lyme Disease.

 

 tomorrow night- Thursday, October 10, 2013 at 8PM on CBC.

Set Your PVRs to tape if you are unable to tune in at the above time!

 

How is this relevant to you?

Because Tick Borne Diseases (LYME and co-infections) are the fastest spreading infectious diseases in North America and anyone, anywhere can contract it!

Please consider this:
A few weeks ago, the USA Centers for Disease Control reported that an estimated 300,000 Americans contract Lyme per year.

Canadian scientists have predicted that 80% of Eastern & Western Canada will be living in areas at risk by 2020.

Still not convinced to tune in?

Last year at this time, we were approached by the producers of David Suzuki's The Nature of Things- to see if we would be willing to be part of the documentary. This would have included several interviews, a camera crew in our home for several days, filming Riley and all of us. This invitation came at a time when Riley was still bedridden, unable to talk, walk, or handle increased stimulus or even family visitors- much less a camera crew of 5 men talking, asking questions, and generally nosing their camera into every detail of the suffering caused by Late Stage Neurological Lyme disease.

So, we declined- but are very grateful for other Canadian families,USA and Canadian doctors, and scientists who have stepped up to the plate to contribute to this important documentary about the spread of Lyme Disease in Canada.

A family very dear to our hearts- Shannon, Graham, Taylor, Parker, Avery, and soon to be famous dog- Harrison- will be in the documentary, sharing their long journey with Lyme.
 

They have been an inspiration to us and have provided amazing support to our family. We have shared laughter and tears on many a late night when darkness overwhelmed us and the glimpses of hope seemed hidden.
They have sacrificed much in order to be part of this global story that must be told!!
 

We ask each of you to stand with all the "Parkers and Rileys" of the Lyme Disease world, and watch this documentary.

 

Please link to their blog for more information on Thursday's show, and to read the brave story of this wonderful family- still battling day in and day out to help restore full health to their son Parker:

http://www.ticksandtrust.blogspot.ca/2013/10/ticked-off-mystery-of-lyme-disease.html

 

Public awareness and education of this insidious disease is paramount. We believe that the information in this documentary will save lives.

Please be sure to tune in or set your PVR to CBC on Thursday, Oct 10 at 8PM.

Here's a link to view a couple of clips from the documentary:

http://www.cbc.ca/natureofthings/episodes/ticked-off-the-mystery-of-lyme-disease

http://www.cbc.ca/player/Shows/ID/2408817950/

Spread the word about tomorrow's show.

Please forward this email onto your family and friends.

 

Love

The Lindberg Family

Summer Reflections

In the tidal push and pull of life, in the flotsam and jetsam of it all, a stubborn part of me often chooses to flail against the current rather than acknowledge that a force much greater than I is at work. I tell myself:  “I am fine”, “Riley is fine”, and “The future will be fine”- as if I am some kind of conjurer or clairvoyant. Later, when things don’t turn out exactly as predicted, I skip over my blessings and land smack-dab in disappointment. What does it mean to “live in the moment” and to accept life’s “mixed bag” of joy and anguish?

“Trails are like that: you’re floating along in a Shakespearean Arden paradise and expect to see nymphs and fluteboys, then suddenly you’re struggling in a hot broiling sun of hell in dust and nettles and poison oak…just like life.”           
                                                               Jack Kerouac

In July,  prior to our first family vacation in four years, Christine and Riley travelled to Tacoma for two weeks of treatment to address severe damage to the structure of his jaw, palette and cranial facial bones.  Riley's years of facial paralysis have contributed to his lingering facial heat, redness, autonomic nervous system irregularities and general fatigue. Structural changes repositioned Riley's tongue, constricting the airway and compromising his entire cardio-vascular system.  The doctor likened Riley’s condition to a person trying to breathe through a narrow straw.  In this hypoxic state, his body has been stuck in a panic mode of “fight or flight", producing heightened anxiety, decreased cognitive stamina and disturbed sleep.  

After numerous x-rays, ultrasounds, and the monitoring of his vitals, the clinic team built a “space-age” dental appliance that Riley now wears 24/7. Although initially quite painful (forcing his lower jaw out and giving him the appearance of a defeated boxer), we were hopeful that the appliance would begin to reduce Riley’s symptoms and allow him to participate more fully on our family vacation.

Monitoring the Valves in his heart- Right and Left Ventricles

Dr. R tweaking the appliance, using the ultrasounds, x-rays as a guide 

First try with the appliance in his mouth

A friend that I work with offered us the use of her families’ vacation home on Salt Spring Island. It would not be an exaggeration to say that we underestimated this generous gift and as a result we were gobsmacked by the spaciousness, tranquility, and natural beauty of the place. A magical, moss-covered, country road (appropriately named Seclusion Lane) delivered us to a house of “glass and light” perched high on a rocky bluff. Thick, wooden beams, and floor-to- ceiling windows, afforded us with breathtaking views of Trincomali Channel, Galiano Island, and in the distance, the snow-covered, volcanic dome of Mt. Baker. What force of imagination built a place in such harmony with rainforest, ocean, and sky?  Enveloped by the stillness and vastness of the place, one was left feeling simultaneously expanded and insignificant. Into this sacred space we arrived exhausted and buoyed up by anticipation.

The beginning of our vacation exceeded our expectations. Riley’s symptoms lessened in severity and the appliance was having a positive impact. We lounged on the wrap-around cedar deck, watched ships sail by, listened to otters cavorting near the shoreline, read, napped in a hammock, went for gentle walks, introduced ourselves to the resident bald eagle and capped the days off by watching the sunset and stargazing in the hot tub! 

Riley also felt strong enough to hike over uneven ground to a place called “Nose Point” where we gazed childlike into tidal pools filled with purple and pumpkin-orange starfish, sea anemones and spiny urchins. With glee, Riley exclaimed “I am on a real hike and back at the ocean’s edge!” On a subsequent day we sat together on a white-shelled beach near Ganges as the wind rustled the Arbutus leaves and children frolicked in the frigid, crashing surf.

First Hike in 4 years

If only I could keep these beach-side memories close when circumstances change. By the end of the first week, Riley began to decline and as the redness and burning in his face increased, his energy decreased proportionally. Clearly he had “tanked” and the progress hit a setback. After several phone calls to Tacoma, Christine and Riley boarded the ferry and drove to Tacoma to have him re-assessed and the appliance adjusted. Evan hung out with his musical Aunt Pierann in Vancouver for a couple of days, and I stayed on Salt Spring pedalling my anxiety and disappointment up and down the narrow, winding, island roads. At least the lavender fields, crisp ocean breeze, and lush vineyards, offered some good cheer.

 A couple of days later, we reunited again on the island just in time to witness a full, burnt-orange moon light up the ocean! Perhaps the moonlight was a harbinger of better things to come, as the day after proved to be one of our most memorable. 

My cousin Murray and his nephew Bryn picked us up in Ganges and ferried us back to Pender Island for a mini-reunion with relatives. For Riley it was a wonderful opportunity to see family he had lost touch with during the depths of his illness. We arrived in time for a succulent, outdoor brunch consisting of:  ice cold Piper’s Pale Ale, local steamed mussels, crab, barbecued salmon, a medley of salads, desserts, warm conversation and laughter!  We basked in the sunshine, soaked up the oceanfront view and remained long enough to witness the sun’s slow decline. Riley’s energy lasted and he was able to visit and enjoy good food and company. Just when we thought we’d experienced the perfect day, someone noticed a cluster of boats idling together along the horizon. Upon closer inspection, we could make out the distinct black dorsal fins, and exhale spouts characteristic of a pod of Orca whales! Clambering into Murray’s boat we managed to maneuver ourselves into a position where we could cut our engine and drift along, watching mesmerized as the whales arched gracefully towards Active Pass. We returned to Salt Spring at dusk, satiated with rich memories.

After our island retreat, Riley and Christine returned to Tacoma for a week of follow-up appointments and the next set of adjustments to his appliance. Since returning to Calgary we have witnessed Riley’s overall energy increase, his sense of humor re-emerge (watching old “Faulty Towers” episodes and doing his own stand-up routine with foreign accents) and seen a reduction in his facial redness and heat. We have also endured a number of discouraging days where Riley has plunged back to a place of discomfort and lethargy.  We have been told that these fluctuations are to be expected, as the appliance gradually reshapes his cranial structure. Over time he is expected to have longer periods of relief and fewer setbacks.  Despite this reassurance, we are impatient at times with the ongoing complexity and expense of his treatment. It is difficult to determine how many visits to Tacoma and Kansas will be needed in order for Riley to continue progressing.  

Christine and Riley embark on their next trip to the USA on Sunday, September 8^th.  Your continued support and prayers are greatly appreciated. 

From summer with love, 

The Lindbergs

 “The world breaks everyone and afterwards many are stronger at the broken places.”

           
                                                                               Ernest Hemmingway

   “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