Monday, November 28, 2016

Proctor does Pilates, part two

Doing Pilates is damn humbling. I'm now four long weeks into my Pilates workout program and I am seeing improvement, yet whenever I begin to think that I've got this Pilates thing pegged Shalene dials it up a notch making me question our friendship. Shalene has been oddly patient with me these past four weeks. In between the homicidal stares and the mumbled curse words she has calmly guided me in and out of movements and positions that shake me to my core (literally).

The past two weeks I have been picking things back up and running a bit more. Admittedly, I have been feeling more controlled at my core. When I run I don't ever think of squeezing and stabilizing my trunk but since starting Pilates with Shalene I feel that my core is more supported and all movements feel easier because of it. I'll be extending the weekly mileage over the remainder of the year and paying close attention to the messages my body is sending me. Injury prevention is a key component to having a successful running season and I feel I'm on the right track starting from the core out.

Tuesday, November 8, 2016

Proctor does Pilates part 1

My name is Dave Proctor and I am weaker then a Tim Hortons cup of coffee. This might come as a surprise to you as I am also the Guinness world record holder for furthest distance run on a treadmill in 24 hours (260.4km), the Canadian 24 hour record holder (257.093km) and hold a number of ultramarathon course records but in reality when the wind picks up I lack the strength to remain upright and coordinate my limbs. I have perfected the balance of doing just barely enough to wobble my way through these events while creating the illusion that I am a lean mean fighting machine. All was going to plan until the end of my 2016 season when a back spasm rocked my world and made all adjoining structures useless to it's owner. This was a major dose of reality. My 5 year old daughter reminds me on the daily "Dad, you are an old man with old bones", I now more then ever am believing her. The days of putting my body through unreal stresses and ignoring that lack of strength and the role it plays in the stability of the bodies structures is now a reality I can no longer dismiss.

Shalene and me
Hours ago I left the Pilates studio at LIVACTIV after shamefully suffering through my second session in as many weeks. The instructor Shalene Melnychuk patiently guided me through a routine of what should be easy peasy exercises and 'squeeze this' and 'breathe here' prompting. Admittedly I've given myself a failing grade. I know what you are thinking, Dave stop being a self deprecating asshole, but in reality people I REALLY REALLY suck at this stuff. When Shalene describes to me that she wants my soft tissues to hug my spine while I move my limbs independently all the while using my diaphragm anchoring with every breathe. Angrily I look up at her quivering like a leaf in a cold sweat wanting this lady to just leave me alone all the while questioning why I can run a hundred miles but can't simply move my body in and out of these simple positions. Either this woman is the sadist who likes making me feel an inferior weak little man or is really onto something here.

The way that Shalene has described it to me is that a runner should be able to anchor and stabilize every step of his run. If there's a weakness or a break in the chain an injury or inefficiency will occur. Shalene has already picked up on a number of deficiencies and is already formulating a plan to address these problems. I am committed to this Pilates program for at least the next three months. In order to reach my goal of running 265 kms at the world 24 hour championships in Ireland in July I must be strong as an ox and that strength will start from my center out. I'll be writing a post every other week to update you about my suffering (I mean progress). 

Sunday, October 2, 2016

Breaking Radio Silence

photo by Neil Zeller
This morning I woke up after 8 hours sleep feeling lethargic and wanting another 4. Making pancakes for the troops, watching the Blue Jays final game of the season then bringing the family over to my parents place over for a Sunday dinner all the time not thinking about running. Truth is the idea of going out for a run disgusts me.

Four months ago I stepped on a treadmill, 24 hours later I stepped off after running 260.4 km setting a new Guinness world record. Aside from my wedding day and the birth of my three children it was the greatest day of my life yet the psychological depths I needed to unearth still shake me to this day. 

The treadmill was a public stage for us at MitoCanada to show the public just how far we will go to find a cure for Mitochondrial disease. In my mind we divide the groups into two, the first were the teams of twelve men and women representing the relentless push of the community of caring hearts all connected with the single purpose and drive. This was evident when I looked to my right and watched those warriors giving it all thirty minutes at a time. A thirty minute run isn't much but running at a fast pace and linked 48 times over, the results were spectacular and awe inspiring. The other group were Bernadette, Arielle, and myself  embodying the mission to never give up even when the finish line seemed endlessly far. Witnessing Arielle and Bernadette's drive and unwillingness to quit arose a feeling of hope and inspiration. This only fueled my drive and conviction to not quit. By noon on the Saturday I had been running for 20 hours and just surpassed the 220 km mark. Anybody who has ever run a 24 hour race will know too well that is the witching hour; the time you look to the east for the sun to rise, sink into your battle mode and mentally prepare for the gorilla to jump on your back. Desperately I tried to sink into my common meditative state. I have been told that when I am in my flow state I look very relaxed and will hold my eyelids closed when I blink for a second or two, but this never happened on that treadmill. In this unfamiliar place with these unfamiliar people feeling entrapped on this hamster wheel and like a prisoner in solidarity confinement been given the freedom of staring at my one meter patch of concrete ahead of me which is now blocked by the endless wall of spectators I started to become unglued. 

photo by Neil Zeller
Since the MitoTreadmill event in late May I have had two failed races. Every morning I'd wake hoping to find the desire to lace up my shoes and enjoy the activity that has given me tremendous joy all my life. It's been exhausting pretending that I am feeling great and I apologize to everyone telling them that I feel back to normal. Trouble is my identity has now been hijacked and I feel uncomfortable with the guy now who doesn't give a shit about running. 

photo by Neil Zeller
Recently I have been enjoying getting out with my ten year old daughter for short jogs in the evening; quite possibly a turning point. My race schedule is confirmed for next year and plans are in the making with MitoCanada for another HUGE event continues because I believe in the old saying "This too shall pass".  I'll be writing a lot less this season as I really don't have much to report but if I do you will be the first to read about it. 

Tuesday, June 14, 2016

MitoTreadmill part TWO

Neil Zeller photography

It was 4:00 am and I had just set a new Guinness World Record for furthest distance run in 12 hours on a treadmill, I should be happy right? Instead I catch myself yawning and hardly able to keep my heavy eyelids open. The men's and women's teams to my right are meticulously hammering away at their treadmills proving the pack mentality reigns supreme and creating a certainty that both their records
Neil Zeller photography
will be obliterated by the end of the day. Daniel Bowie, our emcee had the music pumping and from the start created an energy that lifted the spirits of everyone within speaker distance. Even with all the excitement and stimulus my eyes drooped, my head bobbed and I started fearing that with 12 hours left to run and 120 kilometers to go before eclipsing the record I may run out of gas before reaching the destination. That was the risk of starting the event at 4pm. I knew that 24 hour races were hard enough to power through but starting so late in the day meant I'd be awake all the day before the 4pm start and finish well into the next day fighting a truck load of sleep monsters. The reason for the 4pm start was to maximize on spectator exposure in order to send our message about mitochondrial disease.

Neil Zeller photography
At 4:30 am I decided to drink a Red Bull. Ten minutes after drinking the Red Bull and not feeling any effects I made another terrible error and took three caffeine pills. Within minutes I clutched my left eye feeling like I was being stabbed upon every stride. That headache was vicious! I reached for my sunglasses, put in earplugs, swallowed an Aleve, and asked Daniel to turn down the music volume. The pain was drowning and all I wanted to do was get off this damn treadmill and go huddle in a dark room. Thirty minutes later the headache disappeared and as I looked back at the potential disaster I felt relief that my body recovered and I settled back in a groove. Fuelling to this point had been seamless with eating half fructose and half glucose, up to 350 calories per hour drinking half RE7, half water and a half Nuun tablet. At 6:05 am I passed the 100 mile mark. I had hoped to stay on pace crossing that mark at 6:15 am, so needless to say I was very pleased with pacing to this point. At 7:00 am a young, spunky Arielle Fitzgerald pounced on the treadmill next to me and started her day attempting to break the fastest 50K and 100K runs on a treadmill. She was dialed in listening to music and I didn't want to disturb her groove. Blaine Penny arrived shortly thereafter where we spoke briefly about pacing strategy. Sharon, Misti Sayani, and my 10 year old daughter Julia continued to crew me tirelessly. Simply put, an organized and stress free runner is a fast runner.

Neil Zeller photography
At 8:00 am the workers of the expo arrived to work and see us still hammering away on our treadmills. This really bothered me. The problem is when you are running these long distances there is an importance in zoning out and getting into a flow state. Alternating running on two side by side treadmills for 24 hours you look straight ahead, tilt your head slightly and look down at the ground roughly 20 meters in front of you -  that is your line. Your line becomes your home, it's your zen place where all things become okay. The previous day when the expo was open the same two or three employees kept walking and dancing directly into the middle of my line and stood there. Nine out of every 10 minutes they occupied my line. I tried to stare right through them trying to convince myself that they were not there but I think these employees thought I was looking at them and would start dancing, giving me thumbs ups, engaging me in conversation, telling me to keep going while they pumped their arms like they were running as well. Now I'm certain these people were lovely people with only the very best intentions but this is when I started to mentally lose it. Truth is for the past 16 hours and for the following 8 hours I was unable to enter a flow state. The key to success in ultramarathoning is mental management and the primary key is the ability to enter a flow state where perception of effort lessens and one can run for miles while eliminating himself from the task at hand. This revelation scared the shit out of me as the feeling of self doubt started to flood in but then I asked myself what I enjoyed the most about this sport. My answer was simple - the ability to adapt. The human body shouldn't be able to do these things but it does. The ability of the body and mind to adapt has a ridiculous potential that even science cannot grasp. If I were to run 258K that day I would have to adapt. I gave myself 10 minutes to bitch and complain about my present environment and then create solutions to transform my thought process.

Neil Zeller photography
The next 6 hours went as expected. My pace stayed constant but my effort increased hour by hour. The crowds grew around MitoCanada's treadmills and the energy was building. Right before 11:00 am Arielle broke her 50K Guinness World Record. The energy grew. Next Adam Campbell on the men's team ran 20 km/hr and sailed passed the men's record. The energy grew more. The women were next making it look easy as they drove right past their magic number. At that point the crowd was shoulder to shoulder and produced an atmosphere that one could taste. We had broken 5 out of 7 world records with just me and Arielle to go. I glanced over at Arielle and after digging her way out of a hole her pace and confidence spelled certainty.

Neil Zeller photography
With two hours remaining the wheels started coming off. My fuelling in the last 4 hours went from bad to worse and at this point all I could stomach was Coke. Coca-Cola was something in the past that has worked for me at the end of races but not for as lengthy of a time as 6 hours to go. My lower intestinal tract was becoming a bigger issue and the strength that drove me to that point was now being widdled away piece by piece. My colour changed, my stride shortened and I started now wincing in pain. With an hour and a half left to run I was still on pace to break the record and I decided to take one last bathroom break in hopes to alleviate the pain that was seeping into every cell on my broken
Sam giving his Dad encouragement
body. I'll spare you the details but trying to go to the bathroom made things much worse. A minute later I arrived back on the treadmill only to be  overwhelmed by the pain. It took everything I had to get the treadmill up to a walking pace. That was the first time in the past 23 hours I walked and running seemed impossible. After two minutes of walking I told Sharon I needed to get back to the bathroom to remedy this problem. I remember telling her that unless this problem gets turned around I can't see myself going on. I got back into the bathroom moaning in pain. Once again there was no improvement. While in there Sharon gave me a pep talk and told me to "man up", she told me that unless I got back up on that treadmill in the next 45 seconds and run well for the next 75 minutes this entire event would be a failure. She was right. I arrived back on the treadmill with an entire room chanting my name. I pressed start and with every painful step I got back into a slow trot but I knew this pace wasn't fast enough but it was all I had left. Sharon asked me what I needed. I answered "Tell Blaine I need him".

Neil Zeller photography
Blaine arrived at my side seconds later saying "Dave what do need?"

He later told me that when I looked at him I basically looked right through him and that he never in his life had seen someone suffer from running like that before. I told Blaine that I was in a lot of trouble and that I needed him to tell me a story, a story that would make this pain okay.

Neil Zeller photography
Now for a bit of a back story. Blaine's son Evan has mitochondrial disease and five years ago my son Sam was tested for mitochondrial disease. Thankfully Sam doesn't have it but from that moment on I befriended Blaine and to this day he represents everything that I want to be as a father, husband, friend and athlete. Simply put, it's impossible to respect another person as much as I respect him.

Neil Zeller photography
So Blaine started his story by telling me that the last 6 months with Evan having numerous surgeries and complications almost resulting in losing him have been the hardest 6 months of his life. He went on explaining that the creation of this event and it's development gave him and Sarah much strength in the hospital while dealing with the many challenges that lay before them. He thanked me for thinking up such a wild idea and said that I never will understand how much my friendship has meant to them. He thanked me for this gift. He went on to talking about the importance of why we do these things. He started pointing at pictures of my son Sam propped up on my treadmill and discussed the strength we get by running for those that matter most to us; how both he and I understand one another as we are both fathers of special needs boys and desperately desire hope. He again thanked me for being there for him the past year, then he paused, "Now Dave, finish what you started. I'll be running the last 30 minutes for the men's team. If you are struggling look over and I'll be right over there running with you".

Neil Zeller photography
Neil Zeller photography
During this conversation my colour came back, my posture strengthened and I started pressing the increase speed button finding myself running the same pace that I started only 23 hours before. At that point I knew there was no way I wasn't going to succeed. The pain never went away nor did it diminish but Blaine reminded me the real reason why I was doing this. I was running for those who can't. I stared straight ahead at Sam's photos and a hand written note saying "RUN GRATEFUL :)" and with one hour to go and a new perspective a little smile glowed inside me.

Neil Zeller photography
Neil Zeller photography
At 3:30 pm Arielle glided into the record books making it a near perfect 6/7 Guinness World Records for MitoCanada. Daniel Bowie announced that I only had 3 km before I broke MitoCanada's 7th and final Guinness World Record. I knew this was a certainty. I spent the next 15 minutes inviting my wife, kids, mother and father, brother and sister-in-law, and best friends up so I can tell them how much I love them and how much they mean to me. All this time whenever I looked over at Blaine he would always look back at me. We would point at one another acknowledging the
Neil Zeller photography
bond between us and the friendship we share. At 3:46 pm the horn sounded announcing I had eclipsed the previous world record of 257.88km! I pumped my fists in the air and the enormous crowd went nuts. My best friend John approached me and told me that he went over the numbers many times and he was 99.99% certain that I've just broken the world record but he reminds me that he is a dentist not an accountant and that given any discrepancy I should keep my pedal to the metal. The next 14 minutes were ugly but I took this time to thank and give
Neil Zeller photography
praise to all the spectators that I'm sure were all losing their voices. Still I looked over at Blaine and he looked back at me.

Neil Zeller photography
At 4:00 pm rather than hitting pause I pressed stop. After running 260.4 km and having gone nowhere, I collapsed on the console of my Precor treadmill thanking it for it's hard work. I turned and embraced Sharon, within seconds Blaine arrived sandwiching me and Sharon. We ran for those who can't and we ran a hell of a long way, now everyone knows what MitoCanada is all about.

Neil Zeller photography

Tuesday, June 7, 2016

MitoTreadmill part ONE

The whole team
Neil Zeller photography
Nine months ago Blaine Penny and I sat across a table at Good Earth from Kirsten Fleming and Erin Healey from the Calgary Marathon Management Group. At the conclusion of that productive meeting Blaine smiled, "This is happening buddy."  Our proposal: Break the Guinness World Record for furthest distance run on a treadmill in 24 hours at the Calgary Marathon Race Expo in support of MitoCanada - and I would be the sacrificial lamb. It was Blaine's idea to have a 12 man team run alongside me and attempt to break the team 24 hour record but who would lead this charge? Who could organize this group of misfits and captain this team? Blaine and I said
Tristan Janusc classy as usual
Neil Zeller photography
Neil Zeller photograpy
his name at the same time - Tristan Janusc. Lucky for us it only cost us a case of Tool Shed beer and a foot long sub, Tristan was in. Tristan then made mention that no one wants to go to a sausage party, we need to invite the ladies. Seconds after an email was released to the elite women in the Calgary running community Melissa Paauwe responded with enthusiasm and a pledge to gather a team of 12 ridiculously fast chicks. The super spunky, young 22 year old Arielle Fitzgerald was the next to jump on the Mito train and run the fastest 50K and 100K on a treadmill. Arielle is the 2015 national 100K champ and when I brought up this idea to her she snagged it as quick as a cheap television on Black Friday. Lastly, when Bernadette Benson was in Canada she came in for a massage treatment by yours truly. By the end of the treatment I had twisted her arm enough that she committed to breaking the 12 hour record and she would do it in Australia. Truth is it didn't take much convincing as Bernadette is just as crazy as I am. She would start the run at the same time as me, only set halfway around the world in Australia running for MitoAustralia making it truly a global event.

Robert Lazorko at work
Neil Zeller photography
With the team now assembled we applied for seven Guinness World Records and started planning the main event. Tristan first took the lead guiding a core group through the monumental task of putting on such an event. When Tristan's training and race schedule got too ridiculous our knight in shining armour appeared wielding a day planner and cell phone - his name is Robert Lazorko. OMG, seriously I've never witnessed someone project manage like that before; Robert was truly in his element. We then needed the right person to take on the stage and presentation set up. Tristan and I took turns tickling Daniel Bowie until he gave in. I'm pretty sure if we had just asked he would've said yes but that's no fun. With our logistics team and runners assembled I arrived on event day a quarter exhausted, a quarter excited and the other half scared shitless.

Neil Zeller photography
The horn sounded at 4 pm on Friday May 27th at the Big Four building signaling the start of the 24 hour event. Leading up to the event I avoided stepping on my designated treadmills as I felt an unease being around them yet alone being on them. As I pressed start and lay my finger on the speed button I was filled with mixed emotions but that quickly settled into excitement as I found my forever pace at 12 km/hr and took in the excitement of the crowd. When I looked to my right I saw a continual cycle of strong women on the 12 woman team that exuded confidence with every stride. On the opposite of them were the mens team. I can't tell you how much it meant to me knowing that many of my running idols were in that group. I knew that when times got tough I could feed off the energy of my mates.

The sign Sharon made me to give me space
Neil Zeller photography
My first mistake came early when I started mixing with those who passed by. I answered questions, explained mitochondrial disease, and allowed people to take selfies. By 8:00pm when the expo closed and we settled in for a long overnight I found myself exhausted. Stupid me, I should never have expelled all that energy that early in the race. In order for me to break the Guinness World Record mark of 257.88km I would need a lot of gas and I just wasted a bunch spinning donuts in the parking lot. Only 4 hours in with 20 hours left to run I found myself way more tired than what I should have been. Sharon my wife and crew decided to make a sign for the front of my mill that read "Please do not speak to or f
feed the animal." Dan 'The Man' Bowie was cranking the tunes and did an incredible job of keeping
Dan 'the man' Bowie
Neil Zeller Photography
the energy alive through the wee hours of the night. My pace remained steady at 12 km/hr. That's the beauty about the mill, you set it and it obeys. Yet somehow the mill is the boss and you are its servant. Around 10:00pm I noticed it was getting a bit warm in the building. I started putting ice around my neck and a moist shirt over my head. A few had suggested I place ice around my wrists and arm pits. It helped but still I found myself struggling. We discovered that the building turned off the HVAC and this oversight now zapped my fading energy. We propped the doors open and waited for the system to kick back in and cool the enormous building. Within a couple hours I was back to good feeling proud that my still forever pace of 12 km/hr still remained unchanged. I crossed the 100km mark in 8hrs32min and in control.
Approaching midnight at MitoTreadmill
Gordon MacPherson photography

The ugly wee hours
Neil Zeller photography
My eyelids started to droop at 2:00am, 10 hours into the game. The 4:00pm start time was set to make this more of a spectator event and I knew this would make the back 12 hours of the event torturous. However our goal was to create awareness for mitochondrial disease and my sleep patterns took a back seat. The morning of event day I tried to sleep in, then attempted a nap but to no avail. So at the end of the event I was awake for 33 hours and running 24 out of that 33. At 2:00am while watching Wayne's World I drank half a Red Bull and peeled back my pace to conserve my much needed dwindling energy for the back half where the now very real suffering was going to occur. My fuelling to this point was flawless; eating half fruit and half glucose like Thoz Barz, cookies, chips, and the occasional beef jerky. My drink was half RE7, half water with a half a Nuun tablet in each 500ml bottle which worked great for me. I had gotten word that Bernadette in Australia was fast approaching her GWR for furthest distance run in 12 hours. This seemed to light a fire within me knowing my buddy halfway across the world was suffering with me made the experience feel less lonely. At 3:30 am I found myself minutes of setting the new GWR for furthest distance run in 12 hours. The record to beat was 132.9km. As I ran passed the record mark at 11hrs27min I sped up the mill to 20 km/hour knowing that these legs have plenty of miles left in them. With a brief celebration and Daniel Bowie announcing that Bernadette surpassed her record in Australia our team had taken down 2 of the 7 records with the other 5 in our sights.
Mismatch New Balance Zantes
Neil Zeller photography

At 4:00am exactly 12 hours after pressing the start button a day earlier my mill showed 139.2km., the new GWR! I couldn't have been happier with my front end 12hr number. Word spread quickly that Bernadette had stopped her mill at 128.62km shattering the old record. As Bernadette packed her bags and went home I was settling in for my next 12 hours.

I knew what was coming. This would hurt like hell. Part of the problem was I've done this before and know all too well the world of hurt that was coming. If two words could describe what happened next it's COPING SKILLS...

Thursday, June 2, 2016

Head still isn't right

A lot of you have been asking for my MitoTreadmill blog post. Truth is I'm still have major issues focusing on tasks and having coherient thoughts. Hell I'm having a hard time tying my shoes. I knew this would be mentally hard but I never in my wildest dreams thought I'd experience the mental struggles I ended up
pushing through for those long 24 hours on the mill that day. Even when running a 24 hour track race you can zone out and get into the fog everytime you leave your feeding zone but with constant feedback, fans yelling, people waving, people taking selfies I was never once able to zone out and find the peace I needed to lock in and find my happy place. In fact my desire to access that foggy happy place consumed me and only made the exersise of finding it even that more exhausting.

I want to write a briliant account of what went down on one of the greatest and most difficult days of my life but I ask your patience.

All photos from Neil Zeller Photography

Tuesday, May 3, 2016

A discussion about mitochondrial disease

For those of you that don't know or have avoided my obsessive rambling on the subject. Me and a group of 25 others will be attempting to break 6 Guinness world records on treadmills on May 27-28 at the Calgary Marathon Race Expo (in the Big Four building in Calgary, Canada). Myself, I will be running for 24 long hours and attempting to cover 260km and breaking 2 Guinness World Records along the way for the furthest distance run in 12 and 24 hours. Why would you do something so stupidly ridiculous you may ask? Well, simply, because I can. 

The human body is meant to move and use energy to propel itself for lengthy periods of time; that is if the body is functioning properly. So what happens when the body doesn't function well even at the cellular level? The most fundamental element of cellular function is found in these wee little things called mitochondria. Mitochondria are the power plants of the cell that produce, store and transport energy as needed to allow the cell to perform its regular function. When the mitochondria doesn't do its job, the cells lack function, and at times will fail, which can result in a significant impact on our bodies major organs due to energy deprivation. A common phrase used when discussing this disease is "Running on empty”. There are minimal treatments and therapies for mitochondrial disease and no cure. Ironically, exercise is the best proven therapy for this disease. When you exercise, you produce more mitochondria in each cell and significantly improve the mitochondrial function.
To produce the energy my body needs to run well for 24 hours, my cellular function will need to be close to flawless. Through methods of tireless training and smart fuelling I believe this stretch goal is attainable for me. 

For many who are affected by mitochondrial disease this feat would be impossible and even day-to-day function is a constant uphill battle. One of many impacted by this disease is Marsha Crossman from Regina, SK. Most see photos of Evan Penny and believe that mitochondrial disease is a children's disease, but that is not the case. Mitochondrial disease affects approximately 1 in 4,000 all ages, genders and races and carry a broad range of symptoms from lacking energy in day-to-day function to life threatening ailments due to major organ impact. Unfortunately due to the complexity of the disease, it is estimated that less than 10% of the people who have the disease are diagnosed. I asked Marsha to share her journey and story with us to better understand the reaches of this disease.

Q: Hi Marsha, can you tell me a bit about yourself?

Now 36 years old, I am proud to be Saskatchewan born and raised. Having lived in various small towns across the Province, I now call Regina home.  I have a great job, fun friends, and lots of hobbies.   I live with my super amazing hubby Jon and my step- daughter Jessalyn.  We are a very active family, involved in a quite a few local groups.  I enjoy nature, I love adventures, and I am an animal lover.  I likely have hundreds of photos on my cell of either my dog, or dogs that I have fostered.  In the past year I have become involved with MitoCanada, fundraising and bringing awareness to this great charity.

Q: When were you diagnosed with mitochondrial disease and can you tell us how that came about?

In a regular physical in the fall of 2014, my doctor checked off “CK” on a lab bloodwork requisition.  I had never had this blood test before, and I am really not sure why my doctor requested my CK levels be tested.  CK (Creatine Kinase) is enzyme your muscle secretes when there is severe muscle damage. CK can be found in the mitochondria. A normal range of CK, according to my doctor, is 35-139.  My first reading was 50,000.  I was called back to the doctor and questioned on if I was in any pain (specifically kidney and heart).  I said no, I feel how I always have. My “normal”.  My reading was requested again, and it came back with a CK level of 42,000.  I was referred to a local specialist (rheumatologist) who I met with several times.  He tested my CK levels once a week, slowly reducing exercise weekly until the final week where I had done absolutely no exercise.   My lowest reading was 1100 – still alarmingly high.
This specialist referred me to another doctor in Regina who did an EMG. An Electromyography is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). Motor neurons transmit electrical signals that cause muscles to contract. This doctor was the first to record that I had a muscle disease.  I was then referred to the Calgary Neuromuscular Clinic. In April of 2015, I attended the clinic once for an assessment (had another EMG) and all sorts of other assessments.  A muscle biopsy was scheduled for May of 2015 along with an ischemic forearm test.    You have an IV in your arm and squeeze an object and they take blood at 5 min, 10 min and 20 min (approx.).    The muscle biopsy was a sample of muscle taken from my left quadriceps.  It required several stitches to multiple layers of skin, and fascia.
While waiting for the results of my muscle biopsy, I had an ultrasound on my heart, and an ECG electrocardiogram – measures the electrical activity of your heart done.  Both were normal.  I suspect these types of tests were done due to the fact that the heart is a muscle, and given that CK levels are high in victims of heart attacks, this was done to eliminate heart problems.
In June of 2015 I received a call from the Calgary Neuromuscular Clinic advising me that my sample showed “red ragged fibers”. When treated with a dye that stains mitochondria red, muscles affected by mitochondrial disease often show ragged red fibers — muscle cells (fibers) that have excessive mitochondria. At this time, the doctor diagnosed me with McArdle’s disease.   He also advised me I had a mitochondrial myopathy and was therefore referring me to a specialist whose focus is on metabolic and mitochondrial issues. 

McArdle’s disease is described as:
McArdle’s Disease is a rare, inherited condition that causes severe muscle pain and cramping. It is caused by the inability to produce an enzyme known as myophosphorylase, which is needed to break down glycogen. Without the enzyme, glycogen can’t be used to produce energy during exercise. Exercising through the pain can trigger severe muscle spasms or contractures, and leads to muscle damage. People with McArdle’s disease develop severe muscle cramps and fatigue in the first few minute of activity.  Muscle weakness and stiffness are also experienced.  The disease affects skeletal muscles.  It is not life threatening, rather is just takes learning how to adjust to it. 
With the two new diagnosis, I met with the next specialist and went through a few other tests, including a “jump test” and a process called Next Generation DNA sequencing.
In my case, my mitochondria dysfunction because of my body’s lack of ability to get energy to my muscles.  As I understand it, my mitochondria are overwhelmed and stressed due to not being able to serve their purpose, and that is to produce energy, in my case, to my muscles.
Mitochondrial dysfunction is a secondary diagnosis to my primary diagnoses, McArdle’s disease.

Q: How does your mitochondrial disease affect your day to day life? (This is a good time to continue on and share a story about daily struggles)

Some days  I have no energy, literally. 
One big impact this has had on me recently is that I was denied health crisis insurance.  This was a big reality check for me. 
I am told not do any weight training or anaerobic training including lifting and pushing.  It’s recommended that patients with McArdle’s disease do light aerobic exercise.  That sucks, because I want to do more.
I can’t do relatively “simple” tasks that require immediate muscle use like opening jars, carrying my stepper to my station in my fitness class, carrying heavier groceries, lifting anything heavy.  When I do, I get severe painful cramping and my muscles “seize up.” When I get off an airplane, I can start to feel the symptoms of McArdles in my legs before I get to the luggage pick up.
Most frustrating for me is when it comes to exercise.  There are some days I can go out and run with no issue after my body finds it’s “second wind”, and other days I can’t even run one lap around a track.   I would love to be able to run with a group as opposed to usually on my own at an unpredictable pace, depending on the day.  I live a healthy lifestyle, and I find it frustrating at times not to feel the benefits of all the exercise I do.
I now have to get bloodwork every three months to monitor my CK, kidneys and liver.

Q: I hear you have a tremendous support system. Who are these people?

I do!  I come from a very close family, who has always been a great support. Having been told that this is a rare autosomal recessive disease, this surprised all of us given we are all in “good health”. To have McArdle’s disease, both of my parents have to be carriers of the genetic mutation.  There is no known history in my family of this disease, which means they must be carriers only.
My hubby Jon has been the biggest support to me.  He helps me in so many ways – too many to list. He keeps me motivated to be active and understands the times I am just not able to be active.  He has been part of every step with all the medical stuff that has taken up a lot of our time.  Lots of conversations, lots of making fun of ourselves, and all the time and effort he has put into MitoCanada events, in support of me.  Jon is an ultra-runner, so I rarely get to run with him. But last November he surprised me with a trip to Vegas where he and I could run the Rock N Roll half marathon together (of course, at my pace).  That was a very special run for me.
My friends have been incredibly supportive as well – in particular Jen Ruland.  Jen has taken the time to take part in things that are very important to me.  Whether it be exercise, or her help with MitoCanada events.  She is very inspiring.
My fitness class friends and the marathon matters running club have also been very supportive.  They keep me motivated!!

Q: Speaking of motivational people, I hear you are running your first 50K soon. How is this possible? Tell us more!

Honestly, I don’t know if it is possible – but I am going to try just to see if I can do it.  It will be more of a walk/run trail race, but I am going to just go out there and enjoy no matter how long it takes me.  Of course, I consulted with the specialist I see in Calgary.  It will be bit of a test in that I am working on my threshold of what my exercise limit may be. There are certainly things I have to be mindful of and I won’t know how I feel until the day of.  Like any other runner, the run will be balancing act of proper warm up, nutrition, and energy.
 I hope that perhaps someone can be inspired that they can do the same as me, even if they are struggling with their own type of health issue.  I am very lucky to have the ABILITY to move, so I want to take advantage of that!  I am no doctor, but I believe that at this point in my life, I need to keep my muscles moving.
Running 50km will be hard on my muscles and my mitochondria but I am looking forward to the challenge.  My training consists of a weekly run, spin class, HIIT classes, boot camp, and walking.
Q: Any words of wisdom to the rest of us that tend to take our mitochondrial health for granted?

Try not to take your mito health for granted.  It seems like the body can be a scientific puzzle at times, and things can go wrong when you aren’t ready for it – so use your healthy mitochondrial  in a meaningful way J
I would absolutely love to be able to keep up with my running friends.   If I could, I would run and the time, but I just can’t.  So for those that do have the ability, use it, and be grateful for that.

Friday, March 11, 2016

The Running Injury Clinic

This is a running blog and to date I've kept it as such writing about racing, training, diet and pretty much everything running related in my life. I've kept my work life out of the message, that is until today. On March 18th I'm moving my Calgary massage therapy practice to the Running Injury Clinic in Glenmore Landing, needless to say this is a match made in heaven with the only question being why didn't I do this 5 years sooner. 

The over-arching goal of the Running Injury Clinic is education and development of injury prevention and rehabilitation programs for all runners and walkers through world class research and clinical practice. The overall paradigm is that all of the public seen at the Clinic can potentially be research subjects through various ongoing studies. Thus, their research is facilitated through the clinical practice and the clinical practice is improved through the research. The Running Injury Clinic's core strength lies in the scientific measure of 3D gait biomechanics, muscular strength, flexibility, and anatomical alignment and understanding how these factors contribute to running injuries. They have developed 3D GAIT, a scientifically accurate, 3-dimensional motion capture system and custom software, for use in private physiotherapy clinics and hospitals. Global partnerships with an array of researchers, all data from all systems flow into a central database making the world's largest research database of 3D biomechanical and clinical data.
I have been a full-time Registered Massage Therapist in Calgary since 2000. As my passion for running developed in the past many years so did my thirst for treating running related injuries and understanding the complex biomechanics of the running stride. Not only did this heighten my running abilities but in turn transformed the way I treat the human body when it comes to the stresses that a runner's training model will deposit on the body's soft tissues. The training methods of successful runners are innately aggressive and only stands to reason the treatment of the coinciding issues arising with this repetitive sport be equally aggressive in nature. My passion for this sport we all share would be a waste if I kept this to myself, whereas by treating in a clinic like the Running Injury Clinic and helping other runners achieve their running goals seems to me like a life well lived.

From this point forward I will be using this blog to present to you the cool and relevant studies and findings the Running Injury Clinic's research concludes only adding to the valuable wisdom already found out there. 

Swing on by and check us out. I'll be in the office accepting new patients Wednesdays, Fridays and Saturdays.